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Why do patients with cancer access out-of-hours primary care? A retrospective study
Abstract
Background:
Identifying why patients with cancer seek out-of-hours (OOH) primary medical care could highlight potential gaps in anticipatory cancer care.
Aim:
To explore the reasons for contact and the range and prevalence of presenting symptoms in patients with established cancer who presented to a primary care OOH department.
Design and setting:
A retrospective review of 950 anonymous case records for patients with cancer who contacted the OOH general practice service in Grampian, Scotland between 1 January 2010 and 31 December 2011.
Method:
Subjects were identified by filtering the OOH computer database using the Read Codes 'neoplasm', 'terminal care', and 'terminal illness'. Consultations by patients without cancer and repeated consultations by the same patient were excluded. Data were anonymised. Case records were read independently by two authors who determined the presenting symptom(s).
Results:
Anonymous case records were reviewed for 950 individuals. Eight hundred and fifty-two patients made contact because of a symptom. The remaining 97 were mostly administrative and data were missing for one patient. The most frequent symptoms were pain (n = 262/852, 30.8%); nausea/vomiting (n = 102/852, 12.0%); agitation (n = 53/852, 6.2%); breathlessness (n = 51/852, 6.0%); and fatigue (n = 48/852, 5.6%). Of the 262 patients who presented with pain, at least 127 (48.5%) had metastatic disease and 141 (53.8%) were already prescribed strong opiate medication.
Conclusion:
Almost one-third of patients with cancer seeking OOH primary medical care did so because of poorly controlled pain. Pain management should specifically be addressed during routine anticipatory care planning.
... Furthermore, palliative care is distinct from hospice care [3]. Patients receiving palliative care are at a high risk of experiencing adverse events, such as medication misadventures, which may lead to hospitalisation [4,5]. Consequently, the number of hospitals offering palliative care has increased to meet the demand for healthcare. ...
... The second section included 14 items in a dichotomous (yes/no) format measuring the palliative care knowledge of the participants based on and modified from Adisa et al. [3]. To correctly answer this section, participants had to mark items 2, 6, 7, 10, 12, and 14 as "true" and items 1,3,4,5,8,9,11, and 13 as "false". The higher the score, the greater the knowledge of the participants about providing palliative care. ...
... 4 Two participants: one Jordanian and one Sudanese. 5 One participant did not report a valid response and another participant provided an invalid response. 6 One participant did not report a valid response. ...
Providing palliative care to patients with life-threatening illnesses requires multidisciplinary efforts from different healthcare providers. Identifying the attitude, knowledge, and intentions of pharmacists to provide this service in Saudi Arabia is essential. Therefore, this study aimed to identify the palliative care knowledge, intentions, attitudes, subjective norms, and perceived behavioural control of pharmacists and what factors predict their intentions. Cross-sectional questionnaires based on the theory of planned behaviour were distributed to pharmacists in hospitals and community pharmacies. They included items that measured palliative care knowledge, attitudes, intentions, subjective norms, and the perceived behavioural control of pharmacists and identified other sociodemographic and pharmacy-practice-related items. In total, 131 pharmacists completed the questionnaires, showing an average score on palliative knowledge (8.82 ± 1.96; range: 1–14), strong intentions (5.84 ± 1.41; range: 1–7), positive attitudes (6.10 ± 1.47; range: 1–7), positive subjective norms (5.31 ± 1.32; range: 1–7), and positive perceived behavioural control (5.04 ± 1.21; range: 1–7). Having completed a pharmacy residency program, working longer hours per week, having a more positive attitude, and perceived stronger subjective norms were significantly associated with a strong intention to provide palliative care services. Therefore, enabling and motivating pharmacists to complete pharmacy residency programs and improve their attitudes could increase their intentions to provide these services.
... In the nineteen publications addressing this question (1,10,15,(27)(28)(29)(30)(31)(32)(33)(34)(35)(36)(37)(38)(39)(40)(41)(42), eight themes were identified, grouped under thematic areas of participants, structures and processes, and clinical factors (see Table 2). ...
... Clinical factors related to assessment or diagnosis; symptom management; and precautionary admissions. Admissions were predominantly associated with treatment of pain or other physical symptoms including rapid deterioration in a patient's condition (27)(28)(29)(30)(31)33,34,36,37,40) and complications or failure of initial treatment (29,30,34). Other reported circumstances related to: clinical or diagnostic uncertainty (15,30); complexity of the situation (39); need for further investigation (37); abnormal laboratory results (29); or as a precautionary measure (31). ...
... In the 23 publications that indicated the services arranging admissions (1,10,12,15,26,27,(29)(30)(31)(32)(33)(34)(35)(36)(38)(39)(40)(41)(42)(43)(44)(45)(46), OoH GP services were most often reported (1,10,26,27,(29)(30)(31)(32)(33)35,36,38,(40)(41)(42)44,45) alongside ambulance 999 calls (1,10,15,30,35,36,38,40,41,45), NHS111 / NHS24 / other telephone advice lines (1,35,(38)(39)(40)(41)(42)46), community nursing teams (1,10,35,38,40,42), palliative care teams (1,26,40) and unspecified "unscheduled primary care" (12,34,43). ...
Background
Out-of-hours (OOH) hospital admissions for patients receiving end-of-life care are a common cause of concern for patients, families, clinicians, and policymakers. It is unclear what issues, or combinations of issues, lead OOH clinicians to initiate hospital care for these patients.
Aim
To investigate the circumstances, processes, and mechanisms of UK OOH services-initiated end-of-life care hospital admissions.
Design and setting
Systematic literature review and narrative synthesis.
Method
Eight electronic databases were searched from inception to December 2019 supplemented by hand-searching of the British Journal of General Practice . Key search terms included: ‘out-of-hours services’, ‘hospital admissions’, and ‘end-of-life care’. Two reviewers independently screened and selected articles, and undertook quality appraisal using Gough’s Weight of Evidence framework. Data was analysed using narrative synthesis and reported following PRISMA Complex Intervention guidance.
Results
Searches identified 20 727 unique citations, 25 of which met the inclusion criteria. Few studies had a primary focus on the review questions. Admissions were instigated primarily to address clinical needs, caregiver and/or patient distress, and discontinuity or unavailability of care provision, and they were arranged by a range of OOH providers. Reported frequencies of patients receiving end-of-life care being admitted to hospital varied greatly; most evidence related to cancer patients.
Conclusion
Although OOH end-of-life care can often be readily resolved by hospital admissions, it comes with multiple challenges that seem to be widespread and systemic. Further research is therefore necessary to understand the complexities of OOH services-initiated end-of-life care hospital admissions and how the challenges underpinning such admissions might best be addressed.
... Despite support given to cancer patients at outpatient clinics, uncontrolled cancer pain is the most common reason for contacting GP out-of-hours services. 10 When cancer pain is routinely assessed on hospital wards or in outpatient clinics, this improves pain control for patients. 11 The UK Faculty of Pain Medicine has published Core Standards for cancer pain management, 12 which state that cancer patients should receive a pain assessment at each encounter with an oncology clinician that covers intensity, mechanisms, aetiology and impact. ...
... Second, at a service level, uncontrolled cancer pain remains the most common reason for contacting GP out-of-hours service. 10 Implementing a structured pain assessment within oncology OS would encourage patients to report pain earlier, enabling HCPs to manage cancer pain earlier, reducing the burden on GP out-of-hours service, and minimising the risk of patients living with undertreated cancer pain. ...
Objectives
This study explored cancer pain management practices and clinical care pathways used by healthcare professionals (HCPs) to understand the barriers and facilitators for standardised pain management in oncology outpatient services (OS).
Design
Data were collected using semistructured interviews that were audio-recorded and transcribed. The data were analysed using thematic analysis.
Setting
Three NHS trusts with oncology OS in Northern England.
Participants
Twenty HCPs with varied roles (eg, oncologist and nurse) and experiences (eg, registrar and consultant) from different cancer site clinics (eg, breast and lung). Data were analysed using thematic analysis.
Results
HCPs discussed cancer pain management practices during consultation and supporting continuity of care beyond consultation. Key findings included : (1) HCPs’ level of clinical experience influenced pain assessments; (2) remote consulting impeded experienced HCPs to do detailed pain assessments; (3) diffusion of HCP responsibility to manage cancer pain; (4) nurses facilitated pain management support with patients and (5) continuity of care for pain management was constrained by the integration of multidisciplinary teams.
Conclusions
These data demonstrate HCP cancer pain management practices varied and were unstructured. Recommendations are made for a standardised cancer pain management intervention: (1) detailed evaluation of pain with a tailored self-management strategy; (2) implementation of a structured pain assessment that supports remote consultations, (3) pain assessment tool that can support both experienced and less experienced clinicians. These findings will inform the development of a cancer pain management tool to integrate within routine oncology OS.
... Studies have identified the palliative care population as one of the groups who are at the highest risk of medication misadventure and adverse events, and consequently increased hospital admissions [10,11]. Adam et al [12] reported that almost one-third of patients with cancer access out-of-hours primary medical care due to poorly controlled pain. In essence, patients requiring palliative care typically have complicated and high risk medication regimen such as opioids that require frequent adjustment and monitoring [13,14], thereby making the pharmacist a highly desirable member of palliative care team whose contribution can potentially improve the patient medication management and reduce the risk of non-adherence [15][16][17]. ...
... Section C evaluated opinion on relevant attitude-related statements toward palliative care which was adapted from Pitzen (2009) [35]. The attitude questions had a 5-point Likert scale response option ranging from strongly disagree (1) to strongly agree (5) for positive statements (1)(2)(3)(4)(5)(6), and a reversed score for the negative statements (7)(8)(9)(10)(11)(12)(13). Section D contained item-statements that clarified extent of involvement in some palliative care services in their respective practice site, while Section E contained questions that explored possible factors that may hinder involvement in palliative care (see additional file 1). ...
Abstract Background The growing number of people living with life-limiting illness is a global health concern. This study therefore aimed to explore the involvement of pharmacists in selected tertiary hospitals in Nigeria in palliative care (PC). It also sought to evaluate their knowledge and attitude to PC as well as factors that hinder pharmacists’ participation in PC. Method Questionnaire-guided survey among pharmacists working in three-tertiary hospitals in southwestern Nigeria. The self-administered questionnaire comprised 18-item general knowledge questions related to PC, attitude statements with 5-point Likert-scale options and question-items that clarify extent of involvement in PC and barriers to participation. Overall score by pharmacists in the knowledge and attitude domains developed for the purpose of this study was assigned into binary categories of “adequate” and “inadequate” knowledge (score > 75% versus≤75%), as well as “positive” and “negative” attitude (ranked score > 75% versus≤75%), respectively. Descriptive statistics, Mann-Whitney-U and Kruskal-Wallis tests were used for analysis at p
... Adults being treatment for cancer frequently make unplanned acute hospital visits [1][2][3][4] (emergency department-ED, and inpatient admissions) that are recognized to be a disruptive, [5][6][7] financially burdensome, [8][9][10] and a highly variable aspect of treatment [11]. This has been recognized by a Medicare outpatient chemotherapy quality measure (OP-35) [12] that reports on organization-level unplanned hospital visits for conditions including pain, nausea/vomiting, and fever. ...
Purpose
The literature reports patient perspectives on emergency department (ED) use during cancer treatment. Despite provider and policy interest in reducing ED visits for these adult patients, there are no reports of clinician perspectives on ED care.
Methods
We conducted a qualitative study of semi-structured clinician interviews from 2018 to 2022. We interviewed nine ED and 12 safety-net oncology clinicians from the University of Texas Southwestern and its academically affiliated but clinically distinct safety-net—Parkland Health. We investigated perspectives on acute care needs and ED overuse, analyzed with the constant comparative method.
Results
ED physicians had varying definitions of ED overuse but did not consider visits for pain, nausea/vomiting to qualify. Instead, there was concern for ED visits by patients near the end of life and who were unlikely to meaningfully benefit from hospital care. ED physicians exclusively relied on the oncology consult team for advice (staffed in part by oncology physician trainees), were unsure how to reach outpatient oncologists, and were unaware of an oncology urgent care clinic at their health system. Oncology physician trainees reported no formal training on triaging acute complaints, and variable familiarity with oncology urgent care. Oncology clinicians also did not view patients as overusing the ED, even for conditions due to chemotherapy effects.
Conclusion
We captured under-recognized facets of acute care delivery, especially limited contact between two important teams—emergency medicine and oncology. Contrary to policy perspectives, ED and oncology clinicians did not consider visits for chemotherapy complications to represent ED overuse.
... In the UK, one out of three people with cancer will experience moderate to severe cancer pain [13,14]. In spite of support given to cancer patients at outpatient clinics, uncontrolled cancer pain is the most common reason for cancer patients to contact GP out-of-hours services [15]. However, when effective, systematic, cancer pain management strategies are integrated within cancer care pathways, these enable patients to access: (i) tailored drug treatments [10], (ii) support for selfmanagement [16] and (iii) referral for specialist help [17]. ...
Objectives
Standardising pain assessment in oncology outpatient services (OOS) leads to improvements in patients' pain and quality of life. The Edinburgh Pain Assessment Tool (EPAT) is a standardised cancer pain management tool that has been implemented on inpatient oncology wards (the original setting). Routine use of EPAT reduced post‐surgical pain in cancer patients (the original scenario) and led to more appropriate analgesic prescribing. We describe here a case study of adapting the EPAT intervention for use in tertiary OOS in the United Kingdom (UK) National Health Services (NHS), using the ADAPT guidelines.
Methods
The adaptation process followed Moore et al.'s ADAPT guidance: Step 1: We assessed rationale for adapting EPAT by reviewing existing literature of pain management in OOS. Step 2: Semi‐structured interviews with 20‐healthcare professionals (HCPs) to understand current practice and how the intervention might fit the new context (OOS). Step 3: Identified the ‘core’ and ‘peripheral’ components of EPAT, undertook four co‐design workshops with 7‐HCPs to reconfigure EPAT to fit OOS (adapted version is referred to as EPAT+). Four HCPs trialled the EPAT+ intervention in practice to refine the intervention.
Results
Combining qualitative data from interviews with feedback from the co‐design workshops and preliminary testing the prototype intervention highlighted several key adaptation goals for EPAT+. These included: (1) reduce length/time to complete EPAT+ due to time constraints in outpatient appointments, (2) the importance of pain re‐assessment and using EPAT to facilitate patients to self‐monitor their pain at home, and (3) the creation of new peripheral components to support communication with primary care providers.
Conclusions
Using a theoretical driven conceptual guidance provided important learning on how to adapt an existing cancer pain management tool to a new setting (OOS). The result is a novel complex theory‐ and evidence‐based intervention that will be formally tested in a cluster randomised pilot trial.
... OOH services provide care when daytime general practices are closed (typically, between 18:00 and 8:00 hours on weekdays, weekends and public holidays). People with cancer can experience a range of problems necessitating OOH and emergency service use, [9][10][11] and those with STRENGTHS AND LIMITATIONS OF THIS STUDY ⇒ The questionnaire was systematically designed using behavioural theories and piloted among key stakeholders. ⇒ The questionnaire asked about a wide range of attitudes and beliefs that could influence out-of-hours use. ...
Objective
To investigate how individuals diagnosed with cancer use out-of-hours (OOH) medical services, describe the behavioural determinants of OOH service use and explore whether there are differences between urban and rural dwellers.
Design and setting
A cross-sectional questionnaire study conducted in Northeast Scotland.
Participants
The questionnaire was sent to 2549 individuals diagnosed with cancer in the preceding 12 months identified through the National Health Service Grampian Cancer Care Pathway database. 490 individuals returned the questionnaire (19.2% response rate), 61.8% were urban and 34.9% were rural.
Outcomes
Outcomes were differences in frequency of medical service use and attitudes towards OOH services between urban and rural participants. Patient experience (qualitative data) was compared.
Results
Daytime services were used much more frequently than OOH services—83.3% of participants had never contacted an OOH primary care service in the preceding 12 months but 44.2% had used their daytime general practitioner at least four times. There were no significant differences between urban and rural dwellers in the patterns of OOH or daytime service use, the behavioural determinants of service use or the experiences of OOH services. Rural dwellers were significantly less likely to agree that OOH services were close by and more likely to agree that where they lived made it difficult to access these services. Rural dwellers were no more likely to agree or disagree that distance would affect their decision to contact OOH services. Qualitative results highlighted barriers to accessing OOH services exist for all patients but that long travel distances can be offset by service configuration, travel infrastructure and access to a car.
Conclusions
Urban and rural dwellers have similar beliefs, attitudes towards and patterns of OOH service use. In Northeast Scotland, place of residence is unlikely to be the most important factor in influencing decisions about whether to access OOH medical care.
... The literature on the subject of unscheduled consultations in oncology is scarce. Most publications provide a comprehensive analysis of counseling for cancer patients without limiting to any tumor type [1][2][3][4][5]10,11] , with some exceptions [12] . However, we do not believe that the basic reasons for counseling vary greatly between different types of tumor pathology, although it is foreseeable that the clinical symptoms of this disease will vary. ...
Background: The demand for unplanned care in cancer patients is very common and leads to the interruption and delay of planned activities. We described the incidence of unscheduled consultations in patients with digestive cancer in our hospital. Method: Descriptive, prospective and non-interventional studies were carried out. Unscheduled visits attended in the medical oncology consultation for digestive cancer in the Juan Ramón Jiménez were collected chronologically within 6 months (from May 15th to December 14th, 2017). We used the statistical program G-STAT v.2.0 for descriptive analysis of the collected variables. Results: Patients with colon or rectal cancer had the most visits (68.63%), followed by pancreatic cancer (9.15%) and gastric cancer (5.23%). Most patients had metastatic or advanced cancer (59.87%), and received palliative or symptomatic treatment (58.82%). The most common reason for consultation was clinical symptoms (47.05%), followed by information needs (18.30%). Conclusion: Patients with digestive cancer have a high demand for unscheduled consultations, which interferes with scheduled consultations and problems are not always satisfactorily addressed. Several measures were suggested in this article to reduce the number of such consultations.
... Pain is the most common reason for out-of-hours care and hospitalisation in people with advanced cancer [1]. Recent meta-analysis shows pain prevalence in people with cancer at 66% in advanced metastatic disease compared to 39% after curative treatment and 55% during anticancer treatment [2]. ...
Context
Pain management in palliative care remains inadequate; the development of innovative therapeutic options is needed.
Objectives
To determine the feasibility and preliminary effectiveness for larger randomised controlled trials of 3D head-mounted (HMD) virtual reality (VR) for managing cancer pain (CP) in adults.
Methods
Thirteen people receiving palliative care participated in a single-session randomised cross-over trial, after which they completed a qualitative semi-structured interview. We also compared the effects of 3D HMD VR and 2D screen applications on CP intensity and levels of perceived presence. Feasibility was assessed with recruitment, completion rates and time required to recruit target sample.
Results
Although recruitment was slow, completion rate was high (93%). Participants reported that the intervention was acceptable and caused few side effects. Although participants reported significantly reduced CP intensity after 3D HMD VR (1.9 ± 1.8, P = .003) and 2D screen applications (1.5 ± 1.6, P = .007), no significant differences were found between interventions (−.38 ± 1.2, 95% CI: −1.1–.29, P = .23). Participants reported significantly higher levels of presence with the 3D HMD VR compared to 2D screen (60.7 ± SD 12.4 versus 34.3 ± SD 17.1, mean 95% CI: 16.4–40.7, P = .001). Increased presence was associated with significantly lower pain intensity (mean 95% CI: −.04–−0.01, P = 0.02).
Conclusions
Our preliminary findings support growing evidence that both 3D and 2D virtual applications provide pain relief for people receiving palliative care. Given the relative lack of cybersickness and increasing access to portable VR, we suggest that larger clinical studies are warranted.
... Symptom control in advanced diseases like cancer and chronic obstructive pulmonary disease (COPD), such as neuropathic pain, poor sleep, fatigue, or breathlessness, is often only partially effective and patients continue to live with considerable suffering, which also affects their carers. 21 Out-of-hours use of medical services, when there is less clinical support, is associated with uncontrolled symptoms 22 and associated anxiety. This is often futile, as there is no apparent clinical change and adds to patients' burdens. ...
This is a personal account of using hypnosis as an adjunct to specialist palliative care (SPC) treatment approaches. After a brief systematic review of the literature, one clinician’s experience is outlined illustrated by short, anonymized case histories. It argues that the approach is underused in SPC. The barriers currently restricting its routine adoption in SPC are discussed including (1) a lack of SPC clinical trials, (2) a misunderstanding of hypnosis leading to stigma, and (3) its absence from clinicians’ training pathways. While the evidence base for the effectiveness of hypnosis in ‘supportive care’, for example, managing chemotherapy-induced vomiting, is appreciable, there is a gap in SPC. There is little data to guide the use of hypnosis in the intractable symptoms of the dying, for example, breathlessness or the distress associated with missed or late diagnosis. There are many people now ‘living with and beyond cancer’ with chronic symptomatic illness, ‘treatable but not curable’. Patients often live with symptoms over a long period, which are only partially responsive to pharmacological and other therapies. Hypnosis may help improve symptom control and quality of life. SPC trials are needed so that this useful tool for self-management of difficult symptoms can be more widely adopted.
... Symptom control in advanced diseases like cancer and chronic obstructive pulmonary disease (COPD), such as neuropathic pain, poor sleep, fatigue, or breathlessness, is often only partially effective and patients continue to live with considerable suffering, which also affects their carers. 21 Out-of-hours use of medical services, when there is less clinical support, is associated with uncontrolled symptoms 22 and associated anxiety. This is often futile, as there is no apparent clinical change and adds to patients' burdens. ...
After a brief review of the literature on the use of hypnosis in supportive cancer care - the practical application of hypnosis in every day clinical practice is described and discussed.
... Cancer pain is distressing for patients and their families and is a frequent reason for hospital admissions and emergency department utilisation [3]. Pain is the most frequent reason for calls to out-of-hours primary care services by people with cancer [4,5]. Individuals have difficulties communicating about pain, judging when to seek help and using prescribed analgesics effectively [6]. ...
PurposeTo develop a novel digital intervention to optimise cancer pain control in the community. This paper describes intervention development, content/rationale and initial feasibility testing.Methods
Determinants of suboptimal cancer pain management were characterised through two systematic reviews; patient, caregiver and healthcare professional (HCP) interviews (n = 39); and two HCP focus groups (n = 12). Intervention mapping was used to translate results into theory-based content, creating the app “Can-Pain”. Patients with/without a linked caregiver, their general practitioners and community palliative care nurses were recruited to feasibility test Can-Pain over 4 weeks.ResultsPatients on strong opioids described challenges balancing pain levels with opioid intake, side effects and activities and communicating about pain management problems with HCPs. Can-Pain addresses these challenges through educational resources, contemporaneous short-acting opioid tracking and weekly patient-reported outcome monitoring. Novel aspects of Can-Pain include the use of contemporaneous breakthrough analgesic reports as a surrogate measure of pain control and measuring the level at which pain becomes bothersome to the individual.Patients were unwell due to advanced cancer, making recruitment to feasibility testing difficult. Two patients and one caregiver used Can-Pain for 4 weeks, sharing weekly reports with four HCPs. Can-Pain highlighted unrecognised problems, promoted shared understanding about symptoms between patients and HCPs and supported shared decision-making.Conclusions
Preliminary testing suggests that Can-Pain is feasible and could promote patient-centred pain management. We will conduct further small-scale evaluations to inform a future randomised, stepped-wedge trial.Trial registrationQualitative research: ClinicalTrials.gov, reference NCT02341846Feasibility study: NIHR CPMS database ID 34172
... Pain is of a moderate or severe intensity in more than half of patients with advanced cancer 1 and is undertreated in around one-third of cases. 2 Poorly controlled pain is the most common cause for community-based cancer patients to contact out-of-hours primary care services 3 and is one of the most frequent reasons for their hospitalisation. 4 Although home is the preferred place of care and death for many patients, 5 national surveys show that this is where pain control is poorest. ...
Background
Pain of a moderate or severe intensity affects over half of patients with advanced cancer and remains undertreated in at least one-third of these patients.
Aim
The aim of this study was to provide a pragmatic overview of the evidence supporting the use of interventions in pain management in advanced cancer and to identify where encouraging preliminary results are demonstrated but further research is required.
Design
A scoping review approach was used to examine the evidence supporting the use of guideline-recommended interventions in pain management practice.
Data sources
National or international guidelines were selected if they described pain management in adult cancer patients and were written within the last 5 years in English. The Cochrane Database of Systematic Reviews (January 2014 to January 2019) was searched for ‘cancer’ AND ‘pain’ in the title, abstract or keywords. A MEDLINE search was also made.
Results
A strong opioid remains the drug of choice for treating moderate or severe pain. Bisphosphonates and radiotherapy are also effective for cancer-related bone pain. Optimal management requires a tailored approach, support for self-management and review of treatment outcomes. There is likely a role for non-pharmacological approaches. Paracetamol should not be used in patients taking a strong opioid to treat pain. Cannabis-based medicines are not recommended. Weak opioids, ketamine and lidocaine are indicated in specific situations only.
Conclusion
Interventions commonly recommended by guidelines are not always supported by a robust evidence base. Research is required to evaluate the efficacy of non-steroidal anti-inflammatory drugs, anti-convulsants, anti-depressants, corticosteroids, some invasive anaesthetic techniques, complementary therapies and transcutaneous electrical nerve stimulation.
... 46 Five studies focused on cancer and OOHS use. [47][48][49][50][51] Cancer-related symptoms and palliative care accounted for 2% of OOHS contacts in two observational studies in the UK. 47 48 Analysis of billing claims in Norway showed contacts by patients with a cancer diagnosis accounted for 1% of all OOHS contacts in 2014, although only 47.7% of those contacts were cancer related. ...
Objective
To synthesise international evidence for demand, use and outcomes of primary care out-of-hours health services (OOHS).
Design
Systematic scoping review.
Data sources
CINAHL; Medline; PsyARTICLES; PsycINFO; SocINDEX; and Embase from 1995 to 2019.
Study selection
English language studies in UK or similar international settings, focused on services in or directly impacting primary care.
Results
105 studies included: 54% from mainland Europe/Republic of Ireland; 37% from UK. Most focused on general practitioner-led out-of-hours cooperatives. Evidence for increasing patient demand over time was weak due to data heterogeneity, infrequent reporting of population denominators and little adjustment for population sociodemographics. There was consistent evidence of higher OOHS use in the evening compared with overnight, at weekends and by certain groups (children aged <5, adults aged >65, women, those from socioeconomically deprived areas, with chronic diseases or mental health problems). Contact with OOHS was driven by problems perceived as urgent by patients. Respiratory, musculoskeletal, skin and abdominal symptoms were the most common reasons for contact in adults; fever and gastrointestinal symptoms were the most common in the under-5s. Frequent users of daytime services were also frequent OOHS users; difficulty accessing daytime services was also associated with OOHS use. There is some evidence to suggest that OOHS colocated in emergency departments (ED) can reduce demand in EDs.
Conclusions
Policy changes have impacted on OOHS over the past two decades. While there are generalisable lessons, a lack of comparable data makes it difficult to judge how demand has changed over time. Agreement on collection of OOHS data would allow robust comparisons within and across countries and across new models of care. Future developments in OOHS should also pay more attention to the relationship with daytime primary care and other services.
PROSPERO registration number
CRD42015029741.
... Pain is of a moderate or severe intensity in more than half of patients with advanced cancer (1) and is undertreated in around a third of cases (2). Poorly controlled pain is the most common cause for community-based cancer patients to contact out-of-hours primary care services (3) and is one of the most frequent reasons for their hospitalisation (4). Although home is the preferred place of care and death for many patients (5), national surveys show that this is where pain control is poorest (6). ...
... La bibliografía sobre el tema de consultas no programadas en la especialidad de Oncología es escasa. La mayoría de las publicaciones analiza las consultas en pacientes oncológicos de forma global sin limitarse a ningún tipo tumoral (1,2,3,4,5,10,11) , con alguna excepción (12) . No obstante, no consideramos que los motivos fundamentales de consulta sean muy distintos entre los distintos tipos de patología tumoral, aunque sí es previsible que haya diferencias en la sintomatología clínica que la genera. ...
Objective:
Non-scheduled consultation is very frequent among patients with cancer, creating alterations and delays in programmed visits. We describe the incidence of non-scheduled consultations in patients with digestive cancer in our hospital.
Methods:
Descriptive, prospective, non-interventional study. In a six-month period (May-December 2017), non-scheduled visits were chronologically recorded in the medical oncology consultation of digestive tumours of Hospital Juan Ramón Jiménez de Huelva. We performed a descriptive analysis of the variables collected through the statistical program G-STAT v.2.0.
Results:
Patients with colon or rectal cancer generated most consultations (68.63%). followed by pancreatic (9.15%) and gastric (5.23%). Most patients had metastatic or advanced stage cancer (59.87%) and were under palliative or symptomatic treatment (58.82%). The most frequent reason for consultation was clinical symptoms (47.05%). followed by information demand (18.30 %).
Conclusions:
Non-scheduled consultations in cancer patients are frequent; they cause interference in scheduled consultations and not always resolved satisfactorily. We propose several measures to reduce the number of non-scheduled consultation in oncology.
... Allerdings haben Patienten mit Tumorerkrankung, die häuslich versorgt werden, weniger wahrscheinlich Zugang zu einer angemessenen Schmerztherapie als Patienten in Hospizen oder Krankenhäusern [11,16]. Des Weiteren bleibt ein schlecht kontrollierter Schmerz der wichtigste Grund, warum Patienten mit Tumorerkrankung in einer Notaufnahme vorstellig werden und Bereitschaftsdienste der Primärversorgung kontaktieren [2,29]. ...
... Inadequate management of pain at the end of life is likely to have a significant detrimental impact on quality of life (3) and may lead to increased healthcare costs through unplanned hospital visits and admissions (4). Indeed, one study indicated that poor pain control is the most frequent reason that cancer patients at home need emergency medical help (5). Clearly, achieving good pain management at the end of life is a priority but service provision in this regard often falls short and interventions that are known to be effective are poorly implemented. ...
Objectives
Uncontrolled pain in advanced cancer is a common problem and has significant impact on individuals’ quality of life and use of healthcare resources. Interventions to help manage pain at the end of life are available, but there is limited economic evidence to support their wider implementation. We conducted a case study economic evaluation of two pain self-management interventions (PainCheck and Tackling Cancer Pain Toolkit [TCPT]) compared with usual care.
Methods
We generated a decision-analytic model to facilitate the evaluation. This modelled the survival of individuals at the end of life as they moved through pain severity categories. Intervention effectiveness was based on published meta-analyses results. The evaluation was conducted from the perspective of the U.K. health service provider and reported cost per quality-adjusted life-year (QALY).
Results
PainCheck and TCPT were cheaper (respective incremental costs -GBP148 [-EUR168.53] and -GBP474 [-EUR539.74]) and more effective (respective incremental QALYs of 0.010 and 0.013) than usual care. There was a 65 percent and 99.5 percent chance of cost-effectiveness for PainCheck and TCPT, respectively. Results were relatively robust to sensitivity analyses. The most important driver of cost-effectiveness was level of pain reduction (intervention effectiveness). Although cost savings were modest per patient, these were considerable when accounting for the number of potential intervention beneficiaries.
Conclusions
Educational and monitoring/feedback interventions have the potential to be cost-effective. Economic evaluations based on estimates of effectiveness from published meta-analyses and using a decision modeling approach can support commissioning decisions and implementation of pain management strategies.
... 10,15 In addition, poorly controlled pain remains the main reason for patients with cancer to visit emergency departments and contact out-of-hours primary care services. 2,28 An important factor for patients and carers managing cancer pain at home is having adequate knowledge and understanding of pain and analgesic medications. 22 This has important influences on the quality of pain management for patients at home. ...
Key Points
1. Lack of skills and knowledge, and misinformed attitudes
toward pain and its management have been found to
inhibit optimal pain control.
2. Self-management support comprises the strategies and
interventions by health care professionals to improve
patient’s skills, knowledge, and confidence to manage
their own condition effectively.
3. Tailored information provision combined with enablement
strategies leads to improvements in quality of life and
decreased pain intensity.
4. Effective interventions should target meaningful outcomes
for patients such as self-efficacy and interference of pain
with daily activities.
... Not surprisingly, uncontrolled pain is the most frequent reason for community-based cancer patients to contact out-of-hours primary care services. 10 Although there is evidence that improved pain management for patients with advanced disease is associated with involvement of palliative care, the evidence base is not consistent in reflecting significant methodological heterogeneity. 11 Little is known about the service constituents that are responsible for improved pain management. ...
Background
Pain affects most people approaching the end of life and can be severe for some. Opioid analgesia is effective, but evidence is needed about how best to support patients in managing these medicines.
Objectives
To develop a self-management support toolkit (SMST) and delivery strategy and to test the feasibility of evaluating this intervention in a future definitive trial.
Design
Phase I – evidence synthesis and qualitative interviews with patients and carers. Phase II – qualitative semistructured focus groups and interviews with patients, carers and specialist palliative care health professionals. Phase III – multicentre mixed-methods single-arm pre–post observational feasibility study.
Participants
Phase I – six patients and carers. Phase II – 15 patients, four carers and 19 professionals. Phase III – 19 patients recruited to intervention that experienced pain, living at home and were treated with strong opioid analgesia. Process evaluation interviews with 13 patients, seven carers and 11 study nurses.
Intervention
Self-Management of Analgesia and Related Treatments at the end of life (SMART) intervention comprising a SMST and a four-step educational delivery approach by clinical nurse specialists in palliative care over 6 weeks.
Main outcome measures
Recruitment rate, treatment fidelity, treatment acceptability, patient-reported outcomes (such as scores on the Brief Pain Inventory, Self-Efficacy for Managing Chronic Disease Scale, Edmonton Symptom Assessment Scale, EuroQol-5 Dimensions, Satisfaction with Information about Medicines Scale, and feasibility of collecting data on health-care resource use for economic evaluation).
Results
Phase I – key themes on supported self-management were identified from evidence synthesis and qualitative interviews. Phase II – the SMST was developed and refined. The delivery approach was nested within a nurse–patient consultation. Phase III – intervention was delivered to 17 (89%) patients, follow-up data at 6 weeks were available on 15 patients. Overall, the intervention was viewed as acceptable and valued. Descriptive analysis of patient-reported outcomes suggested that interference from pain and self-efficacy were likely to be candidates for primary outcomes in a future trial. No adverse events related to the intervention were reported. The health economic analysis suggested that SMART could be cost-effective. We identified key limitations and considerations for a future trial: improve recruitment through widening eligibility criteria, refine the SMST resources content, enhance fidelity of intervention delivery, secure research nurse support at recruiting sites, refine trial procedures (including withdrawal process and data collection frequency), and consider a cluster randomised design with nurse as cluster unit.
Limitations
(1) The recruitment rate was lower than anticipated. (2) The content of the intervention was focused on strong opioids only. (3) The fidelity of intervention delivery was limited by the need for ongoing training and support. (4) Recruitment sites where clinical research nurse support was not secured had lower recruitment rates. (5) The process for recording withdrawal was not sufficiently detailed. (6) The number of follow-up visits was considered burdensome for some participants. (7) The feasibility trial did not have a control arm or assess randomisation processes.
Conclusions
A future randomised controlled trial is feasible and acceptable.
Study and trial registration
This study is registered as PROSPERO CRD42014013572; Current Controlled Trials ISRCTN35327119; and National Institute for Health Research (NIHR) Portfolio registration 162114.
Funding
The NIHR Health Technology Assessment programme.
... Current National Health Service policy in England advocates a multidisciplinary approach to the management of patients with advanced disease that prioritises pain and symptom management [8]. However, one UK regional study showed that poor pain control is the most frequent reason that cancer patients at home request urgent medical help [9]. This suggests that current service provision is not adequate and that improved support for community-based self-management of cancer pain is needed. ...
Background
Pain from advanced cancer remains prevalent, severe and often under-treated. AimThe aim of this study was to conduct a discrete choice experiment with patients to understand their preferences for pain management services and inform service development. Methods
Focus groups were used to develop the attributes and levels of the discrete choice experiment. The attributes were: waiting time, type of healthcare professional, out-of-pocket costs, side-effect control, quality of communication, quality of information and pain control. Patients completed the discrete choice experiment along with clinical and health-related quality of life questions. Conditional and mixed logit models were used to analyse the data. ResultsPatients with cancer pain (n = 221) and within palliative care services completed the survey (45% were female, mean age 64.6 years; age range 21–92 years). The most important aspects of pain management were: good pain control, zero out-of-pocket costs and good side-effect control. Poor or moderate pain control and £30 costs drew the highest negative preferences. Respondents preferred control of side effects and provision of better information and communication, over access to certain healthcare professionals. Those with lower health-related quality of life were less willing to wait for treatment and willing to incur higher costs. The presence of a carer influenced preferences. Conclusions
Outcome attributes were more important than process attributes but the latter were still valued. Thus, supporting self-management, for example by providing better information on pain may be a worthwhile endeavour. However, service provision may need to account for individual characteristics given the heterogeneity in preferences.
... [12] Adam et al. found that the most frequent reason for cancer patients contacting OOH services in Scotland was poor pain management, although 53.8% were already prescribed strong opiate analgesics. [13] In an Italian study, Buja et al. also showed that cancer was associated with a higher relative risk of being referred to an emergency department consultation as opposed to a telephone consultation, but cancer patients had a lower relative risk of being referred to the GP's office for consultation. [14] To ensure continuity of care, OOH services should optimally be used for acute health problems, while treatment of non-urgent conditions and regular care for patients, including cancer patients, should be accomplished during daytime. ...
Objective:
To investigate how cancer patients in Norway use primary care out-of-hours (OOH) services and describe different contact types and procedures.
Design:
A retrospective cross-sectional registry study using a billing registry data source.
Setting:
Norwegian primary care OOH services in 2014.
Subjects:
All patients' contacts in OOH services in 2014. Cancer patients were identified by ICPC-2 diagnosis.
Main outcome measures:
Frequency of cancer patients' contacts with OOH services, contact types, diagnoses, procedures, and socio-demographic characteristics.
Results:
In total, 5752 cancer patients had 20,220 contacts (1% of all) in OOH services. Half of the contacts were cancer related. Cancer in the digestive (22.9%) and respiratory (18.0%) systems were most frequent; and infection/fever (21.8%) and pain (13.6%) most frequent additional diagnoses. A total of 4170 patients had at least one cancer-related direct contact; of these, 64.5% had only one contact during the year. Cancer patients had more home visits and more physicians' contact with municipal nursing services than other patients, but fewer consultations (p < 0.001). Patients in the least central municipalities had significantly more contacts than more central municipalities (p < 0.001).
Conclusion:
There was no indication of overuse of OOH services by cancer patients in Norway, which could indicate good quality of cancer care in general. KEY POINTS Many are concerned about unnecessary use of emergency medical services for non-urgent conditions. • There was no indication of overuse of out-of-hours services by cancer patients in Norway. • Cancer patients had relatively more home visits, physician's contact with the municipal nursing service, and weekend contacts than other patients. • Cancer patients in the least central municipalities had relatively more contacts with out-of-hours services than those in more central municipalities.
... 3 Although a link between times of peak usage and longer waiting times for home visits has not been documented, this could be of importance in a population in which pain is likely to be a common presenting complaint. 11 Patients contacting the OOH service with palliative needs were relatively less deprived than contacts for all other causes. Among other factors, the present results may reflect increased awareness of and access to OOH services by more affluent patients, different service usage among different demographic groups, or simply the known trend for more economically deprived communities to have poorer access to health care. ...
Background:
Out-of-hours (OOH) primary care services are integral to the care of patients at end of life. Little is known about the OOH service usage of patients with palliative care needs.
Aim:
To describe patterns of usage of patients presenting to an OOH service and coded as 'palliative'.
Design and setting:
A descriptive study of data from the Oxfordshire OOH service.
Method:
A database of all patient contacts with the Oxfordshire OOH service from a 4-year period (June 2010-August 2014) was used to extract demographic and service usage data for all contacts to which clinicians had applied a 'palliative' code. Observed differences in demographic features between palliative and non-palliative contacts were tested using logistic regression.
Results:
Out of a total of 496 931 contacts, there were 6045 contacts coded palliative; those 'palliative' contacts provided care to 3760 patients. Patients contacting the OOH service with palliative care needs did so predominantly during weekend daytime periods, and over a third had more than one contact. Patients were predictably older than the average population, but contacts coded as 'palliative' were relatively less deprived than contacts to the OOH service for all causes, even after adjusting for age and sex.
Conclusion:
The current 'one-size-fits-most' model of OOH primary care may not allow for the specific needs of patients at the end of life. Wider analysis of palliative patient flow through urgent care services is needed to identify whether healthcare access at the end of life is inequitable, as well as the capacity requirements of a community-based service that can provide high-quality end-of-life care.
... As a result, many patients lack adequate control or relief of symptoms to maintain quality of life. Moreover, these patients often visit out-of-hours services due to uncontrolled pain and other symptoms, or experience hospital admissions during the last phase of life [11,12]. Consequently many patients are not able to die at their preferred place of death [3,13]. ...
Background: The number of people living with advanced cancer and chronic disease has increased worldwide. Many of these patients could benefit from palliative care, focusing on optimising the quality of life of patients and their families facing problems resulting from life-threatening diseases. However, fragmentation and discontinuity of palliative care services often result in suboptimal palliative care. In order to overcome these problems, models using an integrated care approach are increasingly advocated in palliative care services. Although several models and definitions of Integrated Palliative Care (IPC) have been developed, the effects of integrated care are still under-investigated. Knowledge of the key components that constitute successful palliative care integration is still lacking. This mixed methods study will examine the experiences of patients, family caregivers and professional caregivers in order to provide insight into the mechanisms that constitute successful palliative care integration.
... 7 Pain is the most frequent symptom to prompt unscheduled medical care in oncology patients. [8][9][10] Cancer charities in the UK have raised concerns about pain management in the OOH period. 11,12 OOH primary care in the UK is accessed via centralised telephone systems, and provided by healthcare practitioners from a variety of professional backgrounds. ...
Background:
Pain is the most frequent complication of cancer and an important reason for out-of-hours (OOH) primary care contacts by patients with established cancer. Existing quantitative data give little insight into the reason for these contacts. Exploring such encounters of care could highlight ways to improve anticipatory cancer care and communication between daytime and OOH primary care services.
Aim:
To explore the experiences, views, and opinions of patients and their caregivers who have used OOH primary care for help with managing cancer pain.
Design and setting:
A semi-structured interview study with patients and caregivers who have utilised an OOH primary care service in Grampian, Scotland, because of pain related to cancer.
Method:
Semi-structured interviews with 11 patients and four caregivers (n = 15), transcribed verbatim and analysed using framework analysis and, to a lesser extent, inductive thematic analysis.
Results:
Six key themes emerged: making sense of pain and predicting its likely course; beliefs about analgesics; priority daytime access; the importance of continuity of care and communication between all involved; barriers and facilitators to seeking help in the OOH period; and satisfaction/dissatisfaction with OOH care. Three prominent sub-themes were: patient knowledge; the influence of a caregiver on decision-making; and the benefits of having a palliative care summary.
Conclusion:
Effective daytime and anticipatory care can positively influence OOH care. Interventions that aid patients in understanding cancer pain, communicating about pain, utilising analgesics effectively, and seeking appropriate and timely help may improve cancer pain management.
... However, services are frequently fragmented, and there appears to be a disparity of care provision, with patients with non-malignant disease either receiving palliative care in the very late stages of their illness, or not at all [6][7][8]. Whilst there is evidence that most people would prefer to die at home [9], a lack of specialist palliative support can lead to uncontrolled symptoms, including pain management [10], and the need to use out of hours or emergency medical services [11,12]. Consequently, many patients are admitted to hospital and are unable to die in the place of their choosing [13][14][15][16]. ...
The challenge of an ageing population and consequential increase of long term conditions means that the number of people requiring palliative care services is set to increase. One UK hospice is introducing new information and communication technologies to support the redesign of their community services; improve experiences of existing patients; and allow efficient and effective provision of their service to more people. Community Palliative Care Nurses employed by the hospice will be equipped with a mobile platform to improve communication, enable accurate and efficient collection of clinical data at the bedside, and provide access to clinical records at the point of care through an online digital nursing dashboard. It is believed that this will ensure safer clinical interventions, enable delegated specialist care deployment, support the clinical audit of patient care and improve patient safety and patient/carer experience. Despite current attempts to evaluate the implementation of such technology into end of life care pathways, there is still limited evidence supporting the notion that this can be sustained within services and implemented to scale. This study presents an opportunity to carry out a longitudinal evaluation of the implementation of innovative technology to provide evidence for designing more efficient and effective community palliative care services.
A mixed methods approach will be used to understand a wide range of organisational, economic, and patient-level factors. The first stage of the project will involve the development of an organisational model incorporating proposed changes resulting from the introduction of new novel mobile technologies. This model will guide stage two, which will consist of gathering and analysing primary evidence. Data will be collected using interviews, focus groups, observation, routinely collected data and documents.
The implementation of this new approach to community-based palliative care delivery will require significant changes to established working patterns. This new service delivery model is being developed by the Hospice in collaboration with a team of international academic, industry, and clinical commissioning service improvement specialists. The findings from this initial evaluation will provide valuable baseline evidence regarding the delivery of palliative and end-of-life care services.
... As a result, many patients lack adequate control or relief of symptoms to maintain quality of life. Moreover, these patients often visit out-of-hours services due to uncontrolled pain and other symptoms, or experience hospital admissions during the last phase of life [11,12]. Consequently many patients are not able to die at their preferred place of death [3,13]. ...
Background
The number of people living with advanced cancer and chronic disease has increased worldwide. Many of these patients could benefit from palliative care, focusing on optimising the quality of life of patients and their families facing problems resulting from life-threatening diseases. However, fragmentation and discontinuity of palliative care services often result in suboptimal palliative care. In order to overcome these problems, models using an integrated care approach are increasingly advocated in palliative care services. Although several models and definitions of Integrated Palliative Care (IPC) have been developed, the effects of integrated care are still under-investigated. Knowledge of the key components that constitute successful palliative care integration is still lacking. This mixed methods study will examine the experiences of patients, family caregivers and professional caregivers in order to provide insight into the mechanisms that constitute successful palliative care integration.
Methods/Design
Prospective multiple embedded case study. Three to five integrated palliative care initiatives will be selected in Belgium, Germany, Hungary, The Netherlands and the United Kingdom. Data collection will involve Social Network Analysis (SNA), a patient diary, semi-structured interviews, and questionnaires: Palliative care Outcome Scale (POS), Canhelp Lite, Caregiver Reaction Assessment (CRA). Patients and family caregivers will be followed in 4 consecutive contact moments over 3 months. The diary will be kept weekly by patients. One focus group per initiative will be conducted with professional caregivers. Interviews and focus groups will be tape recorded, transcribed and qualitatively analysed using NVivo 10. SPSS Statistics 20 will be used for statistical analysis.
Discussion
This study will provide valuable knowledge about barriers, opportunities and good practices in palliative care integration in the selected initiatives across countries. This knowledge can be used in the benchmark of integrated palliative care initiatives across Europe. It will add to the scientific evidence for IPC services internationally and will contribute to improvements in the quality of care and the quality of living and dying of severely ill patients and their relatives in Europe.
Electronic supplementary material
The online version of this article (doi:10.1186/1472-684X-13-52) contains supplementary material, which is available to authorized users.
... Cancer pain is burdensome at an individual and health care level [4]. For example, in Scotland, over 30% of primary care out of hours contacts for cancer symptoms relate to pain and around 14% of these patients are managed with education and advice [5]. Several large studies of emergency department visits by oncology patients in the USA and Canada have shown that pain is the most frequent reason for attendance, [6,7] and that around 30% could be avoided [8]. ...
Objectives:
Educational interventions are one approach to improving cancer pain management. This review aims to determine whether educational interventions can improve cancer pain management and to characterize components of cancer pain educational interventions.
Methods:
Medline, EMBASE, CINAHL, and Cochrane databases were searched. Systematic reviews that assessed educational interventions to improve cancer pain management were included. Randomized controlled trials (RCTs) were identified from each review. A narrative approach was taken to summarizing the nature and components of interventions.
Results:
Eight systematic reviews and 34 randomized controlled trials (RCTs) were reviewed. Interventions targeting patients can achieve small to moderate reductions in pain intensity. Interventions targeting professionals can improve their knowledge but most trials have not assessed for resultant patient benefits. All interventions included at least one of seven core components: improving knowledge about the nature of cancer pain; aiding communication about cancer pain; enhancing pain assessment; improving analgesic prescribing; tackling barriers to analgesic non-adherence; teaching non-pharmacological pain management strategies; and promoting re-assessment.
Conclusions:
Cancer pain educational interventions can improve pain outcomes. They are complex heterogeneous interventions which often contain a combination of active components.
Practice implications:
Suggestions are made to aid the development of future interventions.
... Activities in the OOH and medical assessments of RFEs for patients with chronic diseases are poorly described in the literature. However, in a recent retrospective study, Adam et al suggested poor pain management to be the overall dominating RFE with the OOH services among patients with cancer [26]. In our study we found however that patients with cancer who recently consulted the daytime GP more often contacted the OOH services due to a new health problem than patients with other chronic diseases; this finding may indicate a reasonably good overall cancer pain control. ...
Background:
The importance of proactive chronic care has become increasingly evident. Yet, it is unknown whether the use of general practice (GP) during daytime may affect the use of Out-of-Hours (OOH) Primary Care Service for people with chronic disease. We aimed to analyse the association between use of daytime general practice (GP) and use of OOH services for heart disease, lung disease, diabetes, psychiatric disease, or cancer. In particular, we intended to study the association between OOH contacts due to chronic disease exacerbation and recent use of daytime GP.
Methods:
Data comprised a random sample of contacts to the OOH services ('LV-KOS2011'). Included patients were categorised into the following chronic diseases: heart disease, lung disease, diabetes, psychiatric disease, or cancer. Information on face-to-face contacts to daytime GP was obtained from the Danish National Health Insurance Service Registry and information about exacerbation or new episodes from the LVKOS2011 survey. Associations between number of regular daytime consultations and annual follow-up consultations during one, three, six, and 12 months prior to index contacts, and outcomes of interest were estimated by using logistic regression.
Results:
In total, 11,897 patients aged ≥ 18 years were included. Of these, 2,665 patients (22.4%) were identified with one of the five selected chronic diseases; 673 patients (5.7%) had two or more. A higher odds ratio (OR) for exacerbation as reason for encounter (RFE) at the index contact was observed among patients with psychiatric disease (OR = 2.15) and cancer (OR = 2.17) than among other patients for ≥2 daytime recent contacts. When receiving an annual follow-up, exacerbation OR at index contact lowered for patients with lung disease (OR = 0.68), psychiatric disease (OR = 0.42), or ≥2 diseases (OR = 0.61).
Conclusion:
Recent and frequent use of daytime GP for patients with the selected chronic diseases was associated with contacts to the OOH services due to exacerbation. These findings indicate that the most severely chronically ill patients tend to make more use of general practice. The provision of an annual follow-up daytime GP consultation may indicate a lower risk of contacting OOH due to exacerbation.
... 4 Pain is the most frequent symptom to prompt OOH primary care contact for those with an established cancer diagnosis. 5 The recent media interest in suboptimal cancer pain management has mainly focused on failings within healthcare systems: for example, inadequacies within OOH services and lack of coordination of care. However, inadequate cancer pain management is known to be a multifactorial problem. ...
Poorly controlled cancer pain has recently received a considerable amount of negative media attention, partly as a result of the publication of a report by Marie Curie Cancer Care that is based on interviews with patients at end of life and with their carers.1 The report highlighted a number of unmet needs. Insufficient access to pain relief and delays in administering analgesia were expressed as particular concerns. Interviewees described carers ‘ having to chase prescriptions ’, and nurses waiting around at night for prescriptions to arrive. Concerns were raised about uncoordinated and discontinuous care, and a failure to implement appropriate anticipatory care. Out-of-hours (OOH) services were criticised for being inefficient and lacking empathy.
In a supplementary Marie Curie-commissioned survey of 1000 UK GPs,2 61% of GPs believed that their terminally ill patients got inadequate access to care at night and at weekends, and six out of 10 GPs believed that the majority of their terminally ill patients’ pain was not completely relieved. The perceived reasons cited for inadequate pain relief included lack of anticipatory prescribing and poor availability of pain relief during the OOH period.
There is good evidence that cancer pain control at the end of life is suboptimal in the community. The Office for National Statistics bereavement survey (VOICES) in 2012 sampled 49 207 recently bereaved informants.3 Relief of pain was reported as being provided ‘ completely, all of the time ’ most frequently in hospices …
Background
Community-based out-of-hours services are an integral component of end-of-life care. However, there is little understanding of how patients and families utilise these services. This additional analysis of a systematic review aims to understand and identify patterns of out-of-hours service use and produce recommendations for future service design.
Method
Data on service use was extracted and secondary analysis undertaken, from a systematic review of models of community out-of-hours services. Narrative synthesis was completed, addressing four specific aspects of service use: 1.Times when patients/families/healthcare professionals need to contact out-of-hours services; 2. Who contacts out-of-hours services; 3. Whether a telephone call, centre visit or home visit is provided; 4. Who responds to out-of-hours calls.
Results
Community-based out-of-hours palliative care services were most often accessed between 5pm and midnight, especially on weekdays (with reports of 69% of all calls being made out-of-hours). Family members and carers were the most frequent callers to of the services (making between 60% and 80% of all calls). The type of contact (telephone, centre visit or home visit) varied based on what was offered and on patient need. Over half of services were led by a single discipline (nurse).
Conclusions
Out-of-hours services are highly used up to midnight, and particularly by patients’ family and carers. Recommendations to commissioners and service providers are to:
• Increase provision of out-of-hours services between 5pm and midnight to reflect the increased use at these times.
• Ensure that family and carers are provided with clear contact details for out-of-hours support.
• Ensure patient records can be easily accessed by health professionals responding to calls, making the triage process easier.
• Listen to patients, family and carers in the design of out-of-hours services, including telephone services.
• Collect data systematically on out-of-hours-service use and on outcomes for patients who use the service.
Social determinants of health (SDOH) are structural factors that yield health inequities. Within the context of cancer, these inequities include screening rates and survival rates, as well as higher symptom burden during and after treatment. While pain is one of the most frequently reported symptoms, the relationship between SDOHs and cancer pain is not well understood. The purpose of this study is to describe and synthesize the published research that has evaluated the relationships between SDOH and cancer pain. A systematic search of PubMed, CINAHL, and Embase was conducted to identify studies in which cancer pain and SDOH were described. In all, 20 studies met the inclusion criteria. In total, 14 studies reported a primary aim related to SDOH and cancer pain. Demographic variables including education or income were used most frequently. Six specific measurements were utilized to measure SDOH, such as the acculturation scale, the composite measure of zip codes for poverty level and blight prevalence, or the segregation index. Among the five domains of SDOH based on Healthy People 2030, social and community was the most studied, followed by economic stability, and education access and quality. The neighborhood and built environment domain was the least studied. Despite increasing attention to SDOH, the majority of published studies use single-dimension variables derived from demographic data to evaluate the relationships between SDOH and cancer pain. Future research is needed to explore the intersectionality of SDOH domains and their impact on cancer pain. Additionally, intervention studies should be conducted to address existing disparities and to reduce the incidence and impact of cancer pain.
Objectives
To understand individual prescribing and associated costs in patients managed with the Edinburgh Pain Assessment and management Tool (EPAT).
Methods
The EPAT study was a two-arm parallel group cluster randomised (1:1) trial, including 19 UK cancer centres. Study outcome assessments, including pain levels, analgesia and non-pharmacological and anaesthetic interventions, collected at baseline, 3–5 days and, if applicable, 7–10 days after admission. Costs calculated for inpatient length of stay (LoS), medications and complex pain interventions. Analysis accounted for the clustered nature of the trial design. In this post-hoc analysis, healthcare utilisation and costs are presented descriptively.
Participants
10 centres randomised to EPAT (487 patients) and 9 (449 patients) to usual care (UC).
Main outcome measures
Pharmacological and non-pharmacological management, complex pain interventions, length of hospital stay and costs related to these outcomes.
Results
The mean per patient hospital cost was £3866 with EPAT and £4194 with UC, reflecting a mean LoS of 2.9 days and 3.1 days, respectively. Costs were lower for non-opioids, Non-steroidal anti-inflammatories (NSAIDs) and opioids but slightly higher for adjuvants with EPAT than with UC. The mean per-patient opioid costs were £17.90 (EPAT) and £25.80 (UC). Mean per patient costs of all medication were £36 (EPAT) and £40 (UC).
Complex pain intervention costs were £117 with EPAT per patient and £90 with UC. Overall mean cost per patient was £4018.3 (95% CI 3698.9 to 4337.8) with EPAT and £4323.8 (95% CI 4060.0 to 4587.7) with UC.
Conclusions
EPAT facilitated personalised medicine and may result in less opioids, more specific treatments, improved pain outcomes and cost savings.
Background
Deaths in the community are increasing. However, community palliative care out-of-hours is variable. We lack detailed understanding of how care is provided out-of-hours and the associated outcomes.
Aim
To review systematically the components, outcomes and economic evaluation of community-based ‘out-of-hours’ care for patients near the end of life and their families.
Design
Mixed method systematic narrative review. Narrative synthesis, development and application of a typology to categorise out-of-hours provision. Qualitative data were synthesised thematically and integrated at the level of interpretation and reporting.
Data sources
Systematic review searching; MEDLINE, EMBASE, PsycINFO, CINAHL from January 1990 to 1st August 2022.
Results
About 64 publications from 54 studies were synthesised (from 9259 retrieved). Two main themes were identified: (1) importance of being known to a service and (2) high-quality coordination of care. A typology of out-of-hours service provision was constructed using three overarching dimensions (service times, focus of team delivering the care and type of care delivered) resulting in 15 categories of care. Only nine papers were randomised control trials or controlled cohorts reporting outcomes. Evidence on effectiveness was apparent for providing 24/7 specialist palliative care with both hands-on clinical care and advisory care. Only nine publications reported economic evaluation.
Conclusions
The typological framework allows models of out-of-hours care to be systematically defined and compared. We highlight the models of out-of-hours care which are linked with improvement of patient outcomes. There is a need for effectiveness and cost effectiveness studies which define and categorise out-of-hours care to allow thorough evaluation of services.
Background
In order to provide responsive, individualised and personalised care, there is now greater engagement with patients, families and carers in designing health services. Out-of-hours care is an essential component of community palliative care. However, little is known about how patients, families and carers have been involved in the planning and design of these services.
Aim
To systematically search and review the research literature that reports on how out-of-hours palliative care services are provided in the community and to identify the extent to which the principles of co-design have been used to inform the planning and design of these services.
Design
Systematic literature search and review.
Data sources
A systematic search for published research papers from seven databases was conducted in MEDLINE, PsycINFO, Embase, Emcare, PubMed, CINAHL and Web of Science, from January 2010 and December 2021. Reference list searches of included papers were undertaken to source additional relevant literature. A manifest content analysis was used to analyse the data.
Results
A total of 77 papers were included. The majority of out-of-hours services in the community were provided by primary care services. The review found little evidence that patients, families or carers were involved in the planning or development of out-of-hours services.
Conclusion
Incorporating patients, families and carers priorities and preferences in the planning and designing of out-of-hours palliative care service is needed for service providers to deliver care that is more patient-centred. Adopting the principles of co-design may improve how out-of-hours care scan be delivered.
ContextCancer pain is common and frequently undertreated; the development of innovative therapeutic options is needed. Objectives To determine the feasibility and preliminary effectiveness for larger randomised controlled trials of 3D head-mounted (HMD) virtual reality (VR) compared with 2D screens for managing cancer pain in adults.Methods
Thirteen people receiving palliative and supportive care participated in a single-session randomised cross-over trial, after which they completed a qualitative semi-structured interview. We also compared the effects of 3D HMD VR and 2D screen applications on cancer pain intensity and levels of perceived presence. Feasibility was assessed with recruitment, completion rates and time required to recruit target sample. ResultsAlthough recruitment was slow, completion rate was high (93%). Participants reported the intervention was acceptable and caused few side-effects. Although participants reported significantly reduced cancer pain intensity after 3D HMD VR (1.9 ± 1.8, P=.003) and 2D screen applications (1.5 ± 1.6, P = .007), no significant differences were found between interventions (-.38 ± 1.2, 95% CI: -1.1-.29, P=.23). Participants reported significantly higher levels of presence with the 3D HMD VR compared to 2D screen (60.7 ± SD 12.4 versus 34.3 ± SD 17.1, mean 95% CI: 16.4-40.7, P=.001). Increased presence was associated with significantly lower pain intensity (mean 95% CI: -.04- -0.01, P = 0.02). Conclusions
We conclude that using HMD VR in palliative care pain settings is feasible and acceptable. In addition, virtual experiences provide relief of cancer pain. Further research is required to confirm the analgesic effects of VR in larger samples against appropriate control groups.
Section 26.1: Pain is the most frequent complication of cancer. Treatment needs to be holistic, involving carers and/or family. It needs to include physical, emotional, psychological, and spiritual aspects and should be reviewed regularly. Good records need to be kept in order to facilitate cooperation with medical colleagues. Pharmacological titration should follow the WHO pain ladder. Opioids and opiates should be administered in the most appropriate form. Physiotherapy and alternative forms of medicine may play an important role in the management of cancer pain. In Sect. 26.2, the approach to assessment and management of cancer pain is discussed, with a focus on care delivered in hospital and in specialist palliative care settings. Opioids are central to cancer pain management and should be individualised to the patient based on the pain history and side effects of the drugs. Opioid switching may be considered in selected patients who do not respond to morphine first line. The impact of renal and hepatic impairment should be considered in the safe prescribing of opioids. A range of adjuvant treatments including drugs for neuropathic pain may complement opioid analgesia in cancer pain.
Background
People with advanced cancer frequently attend unscheduled care, but little is known about the factors influencing presentations. Most research focuses on accident and emergency (A&E) and does not consider GP out-of-hours (GPOOH).
Aim
To describe the frequency and patterns of unscheduled care use by people with cancer in their last year of life and to examine the associations of demographic and clinical factors with unscheduled care attendance.
Design and setting
Retrospective cohort study of all 2443 people who died from cancer in Tayside, Scotland, during 2012–2015. Clinical population datasets were linked to routinely collected clinical data using the Community Health Index (CHI) number.
Method
Anonymised CHI-linked data were analysed in SafeHaven, with descriptive analysis, using binary logistic regression for adjusted associations.
Results
Of the people who died from cancer, 77.9% ( n = 1904) attended unscheduled care in the year before death. Among unscheduled care users, most only attended GPOOH ( n = 1070, 56.2%), with the rest attending A&E only ( n = 204, 10.7%), or both ( n = 630, 33.1%). Many attendances occurred in the last week ( n =1360, 19.7%), last 4 weeks ( n = 2541, 36.7%), and last 12 weeks ( n = 4174, 60.3%) of life. Age, sex, deprivation, and cancer type were not significantly associated with unscheduled care attendance. People living in rural areas were less likely to attend unscheduled care: adjusted odds ratio (aOR) 0.64 (95% confidence interval = 0.50 to 0.82). Pain was the commonest coded clinical reason for presenting (GPOOH: n = 482, 10.5%; A&E: n = 336, 28.8%). Of people dying from cancer, n = 514, 21.0%, were frequent users (≥5 attendances/year), and accounted for over half ( n = 3986, 57.7%) of unscheduled care attendances.
Conclusion
Unscheduled care attendance by people with advanced cancer was substantially higher than previously reported, increased dramatically towards the end of life, was largely independent of demographic factors and cancer type, and was commonly for pain and palliative care.
Objectives
Out-of-hours (OOH) primary care services are contacted in the last 4 weeks of life by nearly 30% of all patients who die, but OOH palliative prescribing remains poorly understood. Our understanding of prescribing demand has previously been limited by difficulties identifying palliative patients seen OOH. This study examines the volume and type of prescriptions issued by OOH services at the end of life.
Methods
A retrospective cohort study was performed by linking a database of Oxfordshire OOH service contacts over a year with national mortality data, identifying patients who died within 30 days of OOH contact. Demographic, service and prescribing data were analysed.
Results
A prescription is issued at 14.2% of contacts in the 30 days prior to death, compared with 29.9% of other contacts. The most common prescriptions were antibiotics (22.2%) and strong opioids (19%). 41.8% of prescriptions are for subcutaneously administered medication. Patients who were prescribed a syringe driver medication made twice as many OOH contacts in the 30 days prior to death compared with those who were not.
Conclusion
Absolute and relative prescribing rates are low in the 30 days prior to death. Further research is required to understand what occurs at these non-prescribing end of life contacts to inform how OOH provision can best meet the needs of dying patients. Overall, relatively few patients are prescribed strong opioids or syringe drivers. When a syringe driver medication is prescribed this may help identify patients likely to be in need of further support from the service.
Purpose:
There is little description of emergency department (ED) visits and subsequent hospitalizations among a safety-net cancer population. We characterized patterns of ED visits and explored nonclinical predictors of subsequent hospitalization, including time of ED arrival.
Patients and methods:
This was a retrospective cohort study of patients with cancer (excluding leukemia and nonmelanoma skin cancer) between 2012 and 2016 at a large county urban safety-net health system. We identified ED visits occurring within 180 days after a cancer diagnosis, along with subsequent hospitalizations (observation stay or inpatient admission). We used mixed-effects multivariable logistic regression to model hospitalization at ED disposition, accounting for variability across patients and emergency physicians.
Results:
The 9,050 adults with cancer were 77.2% nonwhite and 55.0% female. Nearly one-quarter (24.7%) of patients had advanced-stage cancer at diagnosis, and 9.7% died within 180 days of diagnosis. These patients accrued 11,282 ED visits within 180 days of diagnosis. Most patients had at least one ED visit (57.7%); half (49.9%) occurred during business hours (Monday through Friday, 8:00 am to 4:59 pm), and half (50.4%) resulted in hospitalization. More than half (57.5%) of ED visits were for complaints that included: pain/headache, nausea/vomiting/dehydration, fever, swelling, shortness of breath/cough, and medication refill. Patients were most often discharged home when they arrived between 8:00 am and 11:59 am (adjusted odds ratio for hospitalization, 0.69; 95% CI, 0.56 to 0.84).
Conclusion:
ED visits are common among safety-net patients with newly diagnosed cancer, and hospitalizations may be influenced by nonclinical factors. The majority of ED visits made by adults with newly diagnosed cancer in a safety-net health system could potentially be routed to an alternate site of care, such as a cancer urgent care clinic.
Objectives: Offering genuine choice to patients over place of care and death requires the provision of high-quality palliative care 24/7. This study examines the confidence of out-of-hours general practitioners (GPs) in symptom control and end of life prescribing, and identifies their educational needs and preferences in order to inform recommendations for future education. Methods: A self-completion postal survey was designed and sent to 1005 GPs working for an independent provider of out-of-hours services across England. Quantitative data were analysed using descriptive statistics and non-parametric tests. Results: 203 (20.3%) GPs completed the survey questionnaire; 13.3% (n=27) worked exclusively out-of-hours. Confidence in assessing palliative care emergencies (42.8%, n=87: 'not so confident' or 'not at all confident'), managing symptoms in non-cancer patients (39.4%, n=80) and prescribing a new syringe driver (39.0%, n=79) was lowest. Lower confidence was associated with infrequent exposure to palliative patients (p<0.05) and lack of training in palliative care (p<0.05); 12.8% (n=26) had never received formal training. Educational preferences were closely associated with confidence (p<0.0005); the topics above were most requested. E-learning was the preferred method (67.5%, n=137). 82.1% (n=165) believed training focused on out-of-hours work would be beneficial. Conclusions: We identify that confidence in key palliative care competences is severely lacking. Educational strategies to address this concern must be targeted at GPs preferences for content and mode of delivery. Regular e-learning is favoured, but should be blended with other approaches that promote engagement including out-of-hours themed workshops and case discussion. Specialist palliative care services should engage with out-of-hours providers to support education.
Curative chemotherapy for breast cancer is associated with significant toxicities including emergency room (ER) visits and hospital admissions (HAs), events that are underreported in clinical trials. This study examined the reasons for, and factors associated with, ER visits and HA after curative chemotherapy for breast cancer in a tertiary Ontario hospital.
A retrospective study of all patients who completed at least one cycle of curative chemotherapy for breast cancer in 2011 and 2012 was conducted. We recorded ER visits and HAs within 30 days of any chemotherapy. We collected demographics, comorbidities, surgical data, tumor characteristics, chemotherapy type and cycles, and use of granulocyte colony-stimulating factors (G-CSF).
A total of 149 patients underwent curative chemotherapy. Mean age was 58.6 years. Adjuvant chemotherapy was received by 85% of patients and G-CSF by 88.6%. At least one ER visit occurred in 53% of patients, and 13% required HA. The most common causes of ER visits were fever without neutropenia (23.3%), pain (12.8%), and febrile neutropenia (9%). Stage of breast cancer was the only factor statistically significantly associated with ER visits (P = .045); tumor size (P = .019), adjuvant chemotherapy (P = .045), and lower number of chemotherapy cycles (P = .005) were significantly associated with HA.
Future research should focus on identifying the patient, provider, and health system factors associated with ER visits and HAs after chemotherapy for breast cancer, to minimize them and lessen the burden on the health care system.
Copyright © 2015 by American Society of Clinical Oncology.
The aim of this review was to explore the range and prevalence of cancer treatment or disease-related symptoms in the emergency department and their associated outcomes.
A systematic review examined studies cited in Medline, Embase, PsycINFO, and CINAHL published from 1980 to July 2011. Eligible studies measured emergency department visits for symptom assessment in adult oncology patients. Two reviewers independently screened citations and double data extraction was used. Descriptive analysis was conducted.
Of 1,298 citations, six prospective and 12 retrospective descriptive studies were included. Of these, eight focused on multiple symptoms and 10 targeted specific symptoms. The studies were published between 1995 and 2011, conducted in seven countries, and had a median sample size of 143 (range 9-27,644). Of the 28 symptoms reported, the most common were febrile neutropenia, infection, pain, fever, and dyspnea. Definitions provided for individual symptoms were inconsistent. Of 16 studies reporting admission rates, emergency visits resulted in hospital admissions 58 % (median) of the time in multi-symptom studies (range 31 % to 100 %) and 100 % (median) of the time in targeted symptoms studies (range 39 % to 100 %). Of 11 studies reporting mortality rates, 13 % (median) of emergency visits captured in multi-symptom studies (range 1 % to 56 %) and 20 % (median) of visits in targeted symptoms studies (range 4 % to 67 %) resulted in death.
Individuals with cancer present to emergency departments with a myriad of symptoms. Over half of emergency department visits resulted in hospital admissions. Few symptoms were defined adequately to compare data across studies, thereby revealing an important gap in cancer symptom reporting.
For patients dying of cancer, a visit to the emergency department can be disruptive, distressing and exhausting. Such visits made near the end of life are considered an indicator of poor-quality cancer care. We describe the most common reasons for visits made to the emergency department during the final six months of life and the final two weeks of life by patients dying of cancer.
We performed a descriptive, retrospective cohort study using linked administrative sources of health care data.
Between 2002 and 2005 in Ontario, 91,561 patients died of cancer. Of these, 76,759 patients made 194,017 visits to the emergency department during the final six months of life. Further, 31,076 patients made 36,600 visits to the emergency department during the final two weeks of life. In both periods, the most common reasons were abdominal pain, lung cancer, dyspnea, pneumonia, malaise and fatigue, and pleural effusion.
Many visits made to the emergency department by patients with cancer near the end of life may be avoidable. An understanding of the reasons for such visits could be useful in the development of dedicated interventions for preventing or avoiding their occurrence.
The aim of this paper is to identify the major barriers hindering adequate pain management and critically review interventions aiming to overcome them. We searched relevant literature on PubMed published between January 1986 and April 2007. The most frequently mentioned barriers for both patients and professionals were knowledge deficits, inadequate pain assessment and misconceptions regarding pain. Four interventions were identified: patient education, professional education, pain assessment and pain consultation. These interventions were never combined in multidisciplinary study protocols. Most RCTs included small groups of patients and reported no power analysis. Studies on professional education and pain assessment did not evaluate patients' outcomes. In 5 of 11 RCTs on patient education, pain intensity decreased statistically significantly. In two RCTs on pain consultation, patients' pain decreased statistically significantly, although the adequacy of pain treatment did not change. In conclusion, international guidelines on multidisciplinary interventions in pain management are partly substantiated by clinical trials.
The concept - and reality - of continuity of care crosses disciplinary and organisational boundaries. The common definitions provided here should help healthcare providers evaluate continuity more rigorously and improve communication.
Continuity of primary care is known to be associated with both improved processes and outcomes of care. Despite continuity being a desired attribute of end-of-life care and despite the desire by most patients with cancer to die at home, there has been no health services research examining this relationship.
To examine the association between family physician continuity of care and the location of death for patients with cancer. Design of study: A retrospective population-based study involving secondary data analysis of four linked administrative health databases spanning 6 years of information (1992-1997).
Nova Scotia, Canada Participants: All those who died of cancer from 1992 to 1997 and had made at least three ambulatory visits to a family physician.
The relationship of provider continuity of care and an out-of-hospital death was examined using logistic regression.
Out-of-hospital deaths accounted for 31.6% of the 9714 deaths in the study population. The mean provider continuity of care was 0.78 (standard deviation [SD] 0.22). Those who died out-of-hospital had a greater odds of having received high provider continuity (adjusted odds ratio [OR] = 1.54, 95% confidence interval [CI] = 1.22, 1.93) when compared to those who died in-hospital. There appears to be a modification of this effect by gender with a significant association found for males and not for females. The trends in the point estimates are, however, similar for both sexes.
This study demonstrates an association between family physician continuity of care and the location of death for those with advanced cancer. Such continuity should be fostered in the development of models of integrated service delivery for end-of-life care.
Objectives : Exploring terminal patients' perceptions of GPs' role in delivering continuous end-of-life care and identifying barriers to this. Design : Qualitative interview study with patients (two consecutive interviews). Setting : Primary care Belgium. Participants : Seventeen terminally ill cancer patients, informed about diagnosis and prognosis. Results : Terminal patients attribute a pivotal role to GPs in different aspects of two types of continuity. Relational continuity: having an ongoing relationship with the same GP, of which important aspects are eg, keeping in touch after referral and feeling responsible for the patient. Informational continuity: use of information on past events and personal circumstances to provide individualised care, of which important aspects are eg, exchange of information between GPs, specialists and care facilities. Patients also identify barriers to continuity eg, lack of time and of GPs' initiative. Conclusions : At the end of life when physicians can no longer rely on biomedical models of diagnosis-therapy-cure, patients' perspectives are of utmost importance. This qualitative study made it possible to gain insights into terminal patients' perceptions of continuous primary end-of-life care. It clarifies the concept and identifies barriers to it. Palliative Medicine 2007; 21 : 409—415
This study examined public attitudes toward pain associated with cancer and its treatment. A variety of issues were assessed, including the extent to which pain is associated with cancer, fear of pain as a factor in the decision to delay seeking treatment, and concerns about the use of narcotic analgesics for pain control. A statewide sample of 496 adult Wisconsin residents completed a telephone interview. It was found that cancer was perceived as an extremely painful disease relative to other medical conditions. Eighteen percent of the respondents reported that they might be reluctant to seek medical attention due to fear of pain. Concerns about disease- and treatment-related pain were rated as significant psychosocial concerns. There were multiple concerns expressed about the consequences of using narcotic analgesics for pain control. Implications for public education and patient management are discussed.
Patients' reluctance to report pain and to use analgesics are considered major barriers to pain management. To explore this problem, 270 patients with cancer completed a 27-item self-report questionnaire (BQ) that assessed the extent to which they have concerns about reporting pain and using pain medication. The 8 specific concerns included fear of addiction, beliefs that ‘good’ patients do not complain about pain, and concern about side effects. Patients also completed a measure of pain severity and pain interference (the BPI). The percentages of patients having concerns assessed by the BQ ranged from 37% to 85%. Those who were older, less educated, or had lower incomes were more likely to have concerns. Higher levels of concern were correlated with higher levels of pain. Based on their reports of pain medications used in the past week and on their reports of pain severity, patients were categorized as under-medicated versus adequately medicated. Those who were under-medicated reported significantly higher levels of concern. The data are discussed in terms of implications for research and practice.
Emergency departments (EDs) in the United States are used by patients with cancer for disease or treatment-related problems and unrelated issues. The North Carolina Disease Event Tracking and Epidemiologic Collection Tool (NC DETECT) collects information about ED visits through a statewide database.
After approval by the institutional review board, 2008 NC DETECT ED visit data were acquired and cancer-related visits were identified. Descriptive statistics and logistic regressions were performed. Of 4,190,911 ED visits in 2008, there were 37,760 ED visits by 27,644 patients with cancer.
Among patients, 77.2% had only one ED visit in 2008, the mean age was 64 years, and there were slightly more men than women. Among visits, the payor was Medicare for 52.4% and Medicaid for 12.1%. More than half the visits by patients with cancer occurred on weekends or evenings, and 44.9% occurred during normal hours. The top three chief complaints were related to pain, respiratory distress, and GI issues. Lung, breast, prostate, and colorectal cancers were identified in 26.9%, 6.3%, 6%, and 7.7% of visits, respectively, with diagnosis. A total of 63.2% of visits resulted in hospital admittance. When controlling for sex, age, time of day, day of week, insurance, and diagnosis position, patients with lung cancer were more likely to be admitted than patients with other types of cancer.
To the best of our knowledge, this is the first study to provide a population-based snapshot of ED visits by patients with cancer in North Carolina. Efforts that target clinical problems and specific populations may improve delivery of quality cancer care and avoid ED visits.
Oncologic emergencies represent a wide variety of conditions that can occur at any time during the course of a malignancy, from an initial presenting manifestation in someone with an undiagnosed cancer, to end-stage incurable metastatic disease. Emergent conditions can also arise after a malignancy has been in remission for many years, even decades, so clinicians must be aware of any prior history of cancer in patients. Oncologic emergencies include conditions caused by the cancer itself or side effects of therapy. Emergent conditions include metabolic, cardiac, neurologic, or infectious disorders. Many of these emergencies are imminently life-threatening, and can occur in patients with curable disease (such as lymphomas or leukemias); however, many also present in patients with incurable advanced disease. Prompt recognition and treatment of these conditions can lead to markedly improved quality and quantity of life.
Since emergency departments (ED) are designed to manage people with urgent and life-threatening conditions, cancer patients presenting with pain may not receive the appropriate care in the ED. The purpose of this study was to identify the incidence and factors related to ED visits by cancer patients with pain complaints.
Medical charts selected by stratified random sampling were retrospectively reviewed to obtain information about ED visits by cancer patients during a 1-year period. The sample included 1,179 ED visits by 1,026 cancer patients.
Pain was the most common reason for ED visits by cancer patients. The incidence of ED visits for pain as a presenting problem was 27.8%. The 72-h ED return-visit rate was 8.2% for cancer patients who visited the ED with pain complaints. Patients with gastrointestinal and genitourinary cancers were more likely to visit the ED for pain. Patients who had received radiation therapy were less likely to visit the ED for pain.
Effective cancer pain management programs need to be developed and tested to reduce ED visits by cancer patients with pain. More research is needed to explore why cancer patients with pain visit the ED.
This study examined public attitudes toward pain associated with cancer and its treatment. A variety of issues were assessed, including the extent to which pain is associated with cancer, fear of pain as a factor in the decision to delay seeking treatment, and concerns about the use of narcotic analgesics for pain control. A statewide sample of 496 adult Wisconsin residents completed a telephone interview. It was found that cancer was perceived as an extremely painful disease relative to other medical conditions. Eighteen percent of the respondents reported that they might be reluctant to seek medical attention due to fear of pain. Concerns about disease- and treatment-related pain were rated as significant psychosocial concerns. There were multiple concerns expressed about the consequences of using narcotic analgesics for pain control. Implications for public education and patient management are discussed.
The purposes of the study were to determine the knowledge and attitudes about cancer pain management (CPM) among practicing physicians in six Minnesota communities and to determine the physician-related barriers to optimal CPM. Eligible community physicians were surveyed by telephone. The study analyzed responses of 145 physicians (response rate, 87%). The majority of the physicians were primary care specialists (73%). Significant knowledge deficits were identified in nine of 14 CPM principles, but inappropriate attitudes were found in only two of nine CPM concepts. Medical specialty had the strongest influence on knowledge and attitudes, with primary care physicians having significantly better outcomes than surgeons or medical subspecialists. Effective education strategies must address knowledge deficits, attitudes, and motivations of the relevant peer group influencing physicians, as well as those of individual physicians. The Minnesota Cancer Pain Project is testing strategies to enhance CPM by physicians and improve patient outcomes.
Each of the 15 Health Boards in Scotland maintains a computer file of its residents who are registered with a general practitioner; this is known as the Community Health Index or CHI. The CHI allows a variety of demographic data and indicators of health to be analysed on either a geographic or general practice base, or both simultaneously. The considerable potential of the CHI as a public health tool may be of interest to health authorities outside Scotland which are developing wider uses for their own family practitioner registers.
Version 3 of the Read Codes was designed in response to a new set of requirements generated by three new terming initiatives in the UK, the Clinical Terms Project, the Professions Allied to Medicine Terms Project and the Nursing Terms Project. The challenge was to cope with the detail required by clinical specialists for maintaining a computerised record, to capture the natural language used by clinicians in their everyday work, and to support efficient analysis across medical records required to extract information from clinicians' individual patient data. The structure of Version 3 allows a directed acyclic graph to replace the traditional hierarchy; permits multiple such graphs if necessary; introduces qualifiers, embedding these in an information model to support analysis; introduces one-to-many mapping to external classifications where this is necessary; and maintains the tradition of a dynamic terminology that stresses the inclusion of natural clinical terms.
Patients' beliefs can act as barriers to optimal management of cancer pain. The Barriers Questionnaire (BQ) is a tool used to evaluate such barriers. Here, the BQ has been revised to reflect changes in pain management practices, resulting in the Barriers Questionnaire-II (BQ-II), a 27-item, self report instrument. This paper presents the results from two studies where the psychometric properties of the BQ-II were evaluated. In the first study, the responses of 27 nurses trained in pain management were compared to responses of a convenience sample of 12 patients with cancer. The results indicated that patients with cancer had higher mean scores on the BQ-II than did nurses trained in pain management. In the second study, a convenience sample of 172 patients with cancer responded to the BQ-II and a set of pain and quality of life (QOL) measures. A factor analysis supported four factors. Factor one, physiological effects, consists of 12 items addressing the beliefs that side effects of analgesics are inevitable and unmanageable, concerns about tolerance, and concerns about not being able to monitor changes in one's body when taking strong pain medications. Factor two, Fatalism, consists of three items addressing fatalistic beliefs about cancer pain and its management. Factor three, Communication, consists of six items addressing the concern that reports of pain distract the physician from treating the underlying disease, and the belief that 'good' patients do not complain of pain. The fourth and final factor, harmful effects, consists of six items addressing fear of becoming addicted to pain medication and the belief that pain medications harm the immune system. The BQ-II total had an internal consistency of 0.89, and alpha for the subscales ranged from 0.75 to 0.85. Mean (SD) scores on the total scale was 1.52 (0.73). BQ-II scores were related to measures of pain intensity and duration, mood, and QOL. Patients who used adequate analgesics for their levels of pain had lower scores on the BQ-II than did patients who used inadequate analgesics. The BQ-II is a reliable and valid measure of patient-related barriers to cancer pain management.
Despite cancer patients preferring to spend their last days out-of-hospital, many make difficult visits to the emergency department (ED). Family physician continuity of care has been shown in some clinical situations to reduce ED utilization.
To determine if greater family physician continuity of care for cancer patients during the end-of-life is associated with less ED utilization.
This retrospective, population-based study involved secondary analysis of linked administrative data files for 1992 to 1997. Sources included the Nova Scotia Cancer Registry, Vital Statistics, the Queen Elizabeth II Health Sciences Center Oncology Patient Information System and Palliative Care Program (PCP), Hospital Admissions/Separation data, and Physician Services information. Subjects included adults with a recorded date of cancer diagnosis who died of cancer and who had made at least three visits to a family physician during their last 6 months of life. The relationship between total ED visits and family physician continuity of care, developed using the Modified Modified Continuity Index (MMCI), was examined using negative binomial regression with adjustments for survival, year of death, sex, age, cancer type, region, PCP admission, specialty visits, hospital days, death location, income quintile, and total ambulatory visits.
In total, 8702 subjects made 11,551 ED visits (median = 1.0); median MMCI was 0.83. Adjusted results indicate those experiencing low continuity (MMCI < 0.5) made 3.9 times more ED visits (rate ratio [RR] = 3.93; 95% CI [CI] = 3.57-4.34) than those experiencing high continuity (MMCI > or = 0.8) and patients experiencing moderate continuity (MMCI = 0.5-0.8) made twice as many ED visits (RR = 2.28; CI = 2.15-2.42).
Given this significant association between family physician continuity of care and ED visits during the end-of-life, and given international trends to reform primary care, active planning of strategies to facilitate such continuity should be encouraged.
Oncologic emergencies have been extensively described and clearly defined. In oncology daily practice, cancer patients seek non-scheduled medical care in situations they perceive as a medical emergency, but which may not be a true emergency. The aim of the study was to identify the main symptoms leading to a non-scheduled consultation (NSC) and their relationship to the type of cancer, and to evaluate whether the diagnosis at discharge of patients admitted as result of a NSC correlates with a true oncologic emergency. This was a prospective observational study. Between July 2002 and April 2003, 365 NSCs were recorded. The most frequent baseline diseases were breast cancer (70), lung cancer (67), gastrointestinal cancer (52), lymphoma (42) and ovarian cancer (22). The most common symptoms for consultation were: fever (84), pain (81), cutaneous manifestations (26), dyspnea (23), bleeding (16) and abdominal distention (16). Overall, 114 of 365 NSCs (31%) resulted in admission. The most frequent symptoms resulting in admission were fever (42), pain (16), dyspnea (11), vomiting (9), neurologic manifestations (7), abdominal distention (6) and anuria (6). At discharge, only 30 patients (26%) admitted after a NSC were diagnosed with a defined oncologic emergency: febrile neutropenia (13), intestinal occlusion (12), obstructive uropathy (4) and abdominal perforation (1). True emergencies were not the most frequent causes of NSC at our institution.
A cross-sectional study was performed to evaluate the prevalence of pain in our radiotherapy (RT) department. The impact of RT practice on pain and pain management were analyzed.
Of 126 patients, 93 (73.8%) completed the questionnaire proposed in this survey. It was designed to assess the proportion of patients experiencing pain in the department, the impact of RT practice on pain, and patients' estimate of the quality of management of their pain by the medical staff. Pain intensity and patient satisfaction were assessed using an 11-point numeric rating scale.
Of the 93 patients, 66 experienced pain during RT, 13 of whom were totally relieved by analgesic treatment. The mean pain intensity was 3.9 (SD 2.3). A total of 26 patients had a numeric rating >/=4, indicating that their pain was not sufficiently treated. The objective length of waiting time for a session, transportation, and mobilization for session positioning worsened the pain of a substantial proportion of patients. A total of 56% of patients had a favorable opinion about pain management in our department. A high percentage (72.2%) of patients found that the time spent by the medical staff for pain management was inadequate, and 54.5% believed that the psychological support they received was insufficient. Personnel in the RT department remained the primary source of information regarding pain control. However, 17.5% of patients did not report their pain or talked about it to non-health care professionals.
The prevalence of pain was high in the department. The specific practice of RT worsened pain and nearly one-half of patients were not satisfied with its management. The necessity for medical staff to be more available was highlighted by patients.
The Barriers Questionnaire-II (BQ-II) is used to evaluate eight attitudinal barriers to cancer pain management. The purpose of this study was to evaluate the psychometric properties of the Icelandic BQ-II (IBQ-II). Icelandic adults (n=244) completed the IBQ-II, the Brief-Pain-Inventory, and demographic questions. Half the responders were male (52%), and 42.8% had pain on the day of data collection. Participants had a mean (SD) age of 34.73 (11.78) years and education of 15.08 (3.69) years. Factor analysis of the IBQ-II supported three factors. The alpha was 0.90. The mean (SD) IBQ-II total score was 2.32 (0.78), on a scale of 0 to 5, with higher scores indicating stronger barriers. IBQ-II total scores were inversely related to education (r=-0.21; P<0.01), and positively related to least pain (r=0.24; P<0.05), average pain (r=0.23; P<0.05), and pain interference with life activities (r=0.22; P<0.05) for those who had pain. There is support for reliability, validity, and feasibility of the IBQ-II.
This study measures the proportion of cancer patients in Ontario, Canada, with intensive care unit (ICU) admissions, emergency room (ER) visits, or chemotherapy in the last two weeks of life. We used the Ontario Cancer Registry to identify a cohort of cancer patients who died in 2001. These cases were then linked to administrative sources of data to measure each indicator, and to describe the associated clinical and health service factors. In the cohort, 27% had at least one ER visit and 5% had an ICU visit in the last two weeks of life. Of those who received chemotherapy in the last six months, 16% received chemotherapy in the last two weeks of life. Receiving a home care visit in the last six months of life, or a physician house call or a palliative care assessment in the last two weeks of life was consistently associated with decreased odds of each of the indicators. Our results indicate that a significant proportion of Ontario cancer patients have indicators of poor quality end-of-life care. Certain health care factors may influence these indicators.
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