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Symptom recognition in advanced cancer. A comparison of nursing records against patient self-rating
Abstract
The aim of the study was to investigate the extent to which the symptoms experienced by advanced cancer patients were covered by the nursing records. On the day of the first contact with our palliative care department, a nursing record was taken, and on this or the following day, 56 patients filled in the questionnaires EORTC Quality of Life Questionnaire (EORTC QLQ-C30), Edmonton Symptom Assessment System (ESAS), and Hospital Anxiety and Depression Scale (HADS). In each patient, the symptomatology reported in the patient-completed questionnaires was compared with the symptomatology mentioned by the nurse in the nursing record. The analysis revealed good concordance concerning pain and poor physical functioning, but patients reported other symptoms or problems much more often than their nurses. Reasons for these discrepancies are discussed. It is suggested that the nurse's knowledge of the patient's symptomatology might gain from more systematic screening or from transfer of information from patient self-assessment questionnaires to the nursing records.
... Clúster de síntomas sociales Fuente: elaboración propia Discusión Para el análisis de los artículos se partió de asumir, tal como se plantea en la literatura, que el paciente con EPOC tiene manifestaciones de síntomas que se pueden agrupar en físicas, psicológicas y sociales (26)(27)(28). Se encontró que la EPOC presenta una marcada alteración respiratoria funcional. La presencia de este síntoma, característico en gran número de casos, viene acompañado de tos y expectoración. ...
... La presencia de este síntoma, característico en gran número de casos, viene acompañado de tos y expectoración. La manifestación gradual de estos síntomas y la percepción de los pacientes de su estado funcional son lo que determinan la gravedad de la enfermedad y la calidad de vida de los pacientes (23,(26)(27)(28)(29)(30). ...
... La percepción de los síntomas es signicativa, tanto para las intervenciones a realizar -según el nivel y la carga de síntomas-como para la apreciación que el paciente da de estos (18,26). En el caso de los síntomas psicológicos, los estudios de Sandau et al. (27) y Strömgren et al., ponen de maniesto y coinciden en que los síntomas físicos se reconocen más regularmente y con mayor facilidad si se les compara con los síntomas psicológicos (28). ...
La enfermedad pulmonar obstructiva crónica (EPOC) es una entidad patológica que se caracteriza por una serie de manifestaciones físicas persistentes como tos, fatiga, disnea y producción de esputo; síntomas que generan malestar en el paciente desde el momento del diagnóstico y que, al ser una enfermedad irreversible por el daño tisular que causa, progresivamente va incidiendo de manera negativa en la calidad de vida. De otra parte, se ha reportado presencia de síntomas psicológicos como depresión, inseguridad, ansiedad y alteraciones emocionales en los pacientes diagnosticados con EPOC. Así mismo, los pacientes con este diagnóstico tienden a desarrollar comportamientos que alteran sus relaciones sociales familiares y laborales, por cuanto tienden a aislarse debido a la sintomatología, especialmente física. La situación planteada genera la necesidad de desarrollar un trabajo de investigación con el objetivo de reconocer el clúster de síntomas físicos, psicológicos y sociales de los pacientes diagnosticados con EPOC, e identificar si se plantea un abordaje desde la atención paliativa. El estudio se desarrolló mediante una revisión sistemática de literatura en la que se identificaron 1776 artículos, de los que se evaluaron 41 para la identificación del clúster de síntomas. Se identificó el binomio disnea y tos, fatiga y expectoración como el clúster de síntomas físicos; la depresión y la ansiedad constituyen el clúster de síntomas psicológicos, y el impacto en la calidad de vida y la percepción de aislamiento o exclusión social.
... It is presumed within oncology that doctors' and nurses' symptom recognition is a fundament for the palliative care offered, based on the assumption that if a symptom is not recognized and documented by health professionals, it is unlikely that it will be treated. Studies conducted within a population of patients with cancer shows a discrepancy between symptoms reported by patients and the extent to which they are acknowledged by health professionals [23,24]. This discrepancy reduces chances of symptom alleviation and subsequent increased quality of life [23][24][25]. ...
... Studies conducted within a population of patients with cancer shows a discrepancy between symptoms reported by patients and the extent to which they are acknowledged by health professionals [23,24]. This discrepancy reduces chances of symptom alleviation and subsequent increased quality of life [23][24][25]. Systematic screening for symptoms has been suggested as a way to ensure palliative care in specialized units [23][24][25][26]27]. ...
... This discrepancy reduces chances of symptom alleviation and subsequent increased quality of life [23][24][25]. Systematic screening for symptoms has been suggested as a way to ensure palliative care in specialized units [23][24][25][26]27]. ...
Context: Patients with chronic obstructive pulmonary disease (COPD) have a high symptom burden and reduced quality of life. There is an increasing attention on palliation for patients with COPD. Recognition of symptoms is a prerequisite for palliation.
Objectives: We aim to investigate the extent to which symptoms in patients with COPD are recognized in the documentation of the health professionals, indicated in ‘Doctors Symptom Recognition Rate’ (DSR), ‘Nurses Symptom Recognition Rate’ (NSR) or ‘Doctors and/or Nurses Symptom Recognition rates ’(DNSR) as a team, respectively.
Methods: Patients with COPD (n = 40) admitted in two respiratory units, responded within 48 h on two symptom-screening-tools that access quality of life; COPD assessment test (CAT) used for the treatment of COPD and EORTC-QLQ-C15-PAL used for palliation in patients with cancer. Patient-described symptomatology was compared to the symptoms as recognized in the documentation of doctors and/or nurses.
Results: There was a significant discrepancy between the symptomatology indicated by patients with COPD on CAT and EORTC-QLQ-C15-PAL, and the degree by which it was recognized in the medical records indicated in DSR or NSR. In 30 out of 44 items DSR or NSR were < 70%. There was a significant difference between DNSR versus DSR or NSR, respectively, in 19 out of 22 items.
Conclusion: A team-based symptom recognition DNSR is superior when compared to DSR or NSR.
Team-based systematic screening is suggested as a pathway to increase symptom recognition in patients with COPD. Increased rates of symptom recognition may improve symptom alleviation and thus palliation.
... Prior publications demonstrate a lack of concordance between symptom recognition by clinicians and patient selfreporting. 3,[7][8][9] For instance, in one large clinical trial patients rated several tamoxifen-related symptoms (hot flushes, weight gain, night sweats, sleeping difficulties and loss of libido) as severe, but concordance of these with clinicians' recordings at any severity was less than expected by chance. 8 Likewise, in 1090 patients with breast or lung cancer included in three randomised trials, the reporting of significant chemotherapy (ChT)-related toxicity (all symptoms analysed), e.g. ...
... of breath) and psychological distress (depression and anxiety), with the option of adding a tenth patient-specific symptom [9][10][11]. There is good evidence that PROs captured through ESAS completion more accurately depict symptom burden than do interrogation and documentation by a clinician [12,13]. In view of this, completion of the ESAS by all patients attending cancer clinics has been mandated in many jurisdictions, including the Province of Ontario, Canada [14,15]. ...
Prior to the COVID-19 pandemic, patients attending ambulatory clinics at cancer centers in Ontario completed the Edmonton Symptom Assessment Scale (ESAS) at each visit. At our center, completion was via touchpad, with assistance from clinic volunteers. As of March 2020, clinic appointments were conducted virtually when possible and touch pads removed. We anticipated a negative impact on the collection of patient-reported outcomes (PROs) and the recognition of severe symptoms.
Methods
We performed a prospective cross-sectional cohort study to investigate remote ESAS completion by patients with appointments at a weekly surgical oncology clinic. Patients in the initial study cohort were asked to complete and return the ESAS virtually (V). Given low completion rates, the ensuing cohort was asked to complete a hard-copy (HC) ESAS. For the final cohort, we provided remote, personal mentorship by a member of the care team to support virtual electronic ESAS completion (virtual-mentored (VM) cohort).
Results
Between May and July 2020, a total of 174 patient encounters were included in the study. For the V cohort, 20/46 patients (44%) successfully completed and returned the electronic ESAS, compared to 49/50 (98%) for the HC cohort. For the VM cohort, the overall completion rate was 74% (58/78); however, 12 of these 58 patients did not independently complete a virtual ESAS. Virtual questionnaire completion was not predicted by age, sex, or tumor site, although patients who completed the ESAS were more likely to be in active management rather than surveillance (p = 0.04). Of all completed forms, 42% revealed a depression score of ≥2, and 27% an anxiety score of ≥4.
Conclusions
We identified significant barriers to the virtual completion of ESAS forms, with a lack of predictive variables. The severe degree of psychological distress reported by ~50% of respondents demonstrates the need for ongoing regular collection/review of these data. Innovative solutions are required to overcome barriers to the virtual collection of PROs.
... In particular, dyspnea was reported in 53 patients (7.0%) in the referral form, while it was detected in 226 patients (34.2%) during their SCOC visit (p < 0.0001). Indeed, while toxicities and laboratory results can be consistently reported by healthcare personnel, subjective experiences such as symptoms are best reported by patients themselves, and several studies demonstrated under-reporting of symptoms by clinicians compared to patient self-reporting [29][30][31]. Patient-reported outcome measures, such as the ESAS in the advanced disease setting, are therefore fundamental for optimal acknowledgement of symptoms, and their proper management, improving quality of life, and possibly survival. In our study, in fact, symptom screening by the ESAS allowed for the identification of patients with greater symptom burden who would benefit most from early palliative care [32]. ...
Simple Summary
At the Veneto Institute of Oncology-IRCCS, a simultaneous-care outpatient clinic (SCOC) has been active since 2014. Here, patients with advanced-stage disease are evaluated by a multidisciplinary team composed of an oncologist, a palliative care physician, a physician specialized in clinical nutrition, a psycho-oncologist and a nurse navigator, offering an early approach to palliative care, as suggested by clinical and scientific evidence. At the end of 2017, a procedure was implemented with the definition of indicators collected annually to evaluate the performance of the SCOC. This study aimed to describe the activity of the SCOC over the years, as well as its performance through the evaluation of these indicators. This is the first report which analyzed the effectiveness of an outpatient clinic where the patient is evaluated simultaneously by the oncologist and the palliative care team and illustrates a new organizational model to improve good clinical practice.
Abstract
Benefits of early palliative care referral in oncology are well-validated. At the Veneto Institute of Oncology-IRCCS, a simultaneous-care outpatient clinic (SCOC) has been active since 2014, where patients with advanced cancer are evaluated by an oncologist together with a palliative care team. We prospectively assessed SCOC patients’ characteristics and SCOC outcomes through internal procedure indicators. Data were retrieved from the SCOC prospectively maintained database. There were 753 eligible patients. The median age was 68 years; primary tumor sites were gastrointestinal (75.2%), genitourinary (15.0%) and other sites (9.8%). Predominant symptoms were psychological issues (69.4%), appetite loss (67.5%) and pain (65.9%). Dyspnea was reported in 53 patients (7%) in the referral form, while it was detected in 226 patients (34.2%) during SCOC visits (p < 0.0001). Median survival of patients after the SCOC visit was 7.3 months. Survival estimates by the referring oncologist were significantly different from the actual survival. Psychological intervention was deemed necessary and undertaken in 34.6% of patients, and nutritional support was undertaken in 37.9% of patients. Activation of palliative care services was prompted for 77.7% of patients. Out of 357 patients whose place of death is known, 69.2% died at home, in hospice or residential care. With regard to indicators’ assessment, the threshold was reached for 9 out of 11 parameters (81.8%) requested by the procedure. This study confirmed the importance of close collaboration between oncologists and palliative care teams in responding properly to cancer patients’ needs. The introduction of a procedure with indicators allowed punctual assessment of a team’s performance.
... The Edmonton Symptom Assessment Scale (ESAS) is a validated self-reporting tool of symptom severity for nine common symptoms of advanced cancer that accurately captures PROs including a variety of physical symptoms (pain, tiredness, nausea, drowsiness, appetite, wellbeing, shortness of breath) and psychological distress (depression, anxiety), with the option of adding a tenth patient-speci c symptom [9][10][11]. There is good evidence that PROs captured through ESAS completion more accurately depict symptom burden than do interrogation and documentation by a clinician [12,13]. In view of this, completion of the ESAS by all patients attending cancer clinics has been mandated in many jurisdictions, including the Province of Ontario, Canada [14,15]. ...
Prior to the COVID-19 pandemic, patients attending ambulatory clinics at cancer centers in Ontario completed the Edmonton Symptom Assessment Scale (ESAS) at each visit. At our center, completion was via touch pad, with assistance by clinic volunteers. As of March 2020, clinic appointments were conducted virtually when possible and touch pads removed. We anticipated a negative impact on the collection of patient-reported outcomes (PROs), and the recognition of severe symptoms.
Methods: We performed a prospective cross-sectional cohort study to test the feasibility of remote ESAS completion by patients with appointments at a weekly surgical oncology clinic. Patients in the initial study cohort were asked to complete and return the ESAS virtually(V). Given low completion rates, the ensuing cohort was asked to complete a hard-copy(HC) ESAS. For the final cohort, we used an adaptive approach, providing remote, personal mentorship by a member of the care team to support virtual electronic ESAS completion (virtual-mentored(VM) cohort).
Results: Between May-July 2020, a total of 174 patient encounters were included in the study. For the V cohort, 20/46 patients (44%) successfully completed and returned the electronic ESAS, compared to 49/50 (98%) for the HC cohort. For the VM cohort (n=78), the completion rate was 74%. Questionnaire completion was not predicted by age, sex or tumor site, although patients who completed the ESAS were more likely to be in active management rather than surveillance(p=0.04). Of all completed forms, 42% revealed a depression score ³2, and 27% an anxiety score ³4.
Conclusions: We identified significant barriers to the virtual completion of ESAS forms, with a lack of predictive variables. The severe degree of psychological distress reported by ~50% of respondents demonstrates the need for ongoing regular collection/review of these data. Innovative solutions are required to overcome barriers to virtual collection of PROs.
... This could be because majority of the staff included in this study were ward nurses in the acute hospital setting, who may be less attuned to the patient's problems and concerns compared to palliative care clinicians surveyed in the other validation studies. For use in this context, where giving training to acute ward nurses to assess palliative care problems and concerns may not be feasible, family caregivers could be explored as alternative proxy respondents who could potentially have greater agreement with patient-reported scores compared to healthcare proxies [22,23]. As patients at more advanced stages of disease may have reduced physical and mental capacity to self-respond to such questionnaires, it is worthwhile to further explore how the proxy measure can be administered more reliably in the local context. ...
Context:
Measurement of patient-centred outcomes enables clinicians to focus on patient and family priorities and enables quality of palliative care to be assessed.
Objectives:
This study aimed to evaluate the validity and reliability of the English and translated Chinese versions of the Integrated Palliative care Outcome Scale (IPOS) among advanced cancer patients in Singapore.
Methods:
IPOS was forward and backward translated from English into Chinese. Structural validity was assessed by confirmatory factor analysis; known-group validity by comparing inpatients and community patients; construct validity by correlating IPOS with Edmonton Symptom Assessment System-revised (ESAS-r) and Functional Assessment of Cancer Therapy-General (FACT-G); internal consistency by Cronbach's alpha; inter-rater reliability between patient and staff responses; test-retest reliability of patient responses between two timepoints.
Results:
One hundred eleven English-responding and 109 Chinese-responding patients participated. The three-factor structure (Physical Symptoms, Emotional Symptoms and Communication and Practical Issues) was confirmed with Comparative Fit Index and Tucker-Lewis-Index > 0.9 and Root Mean Square Error of Approximation < 0.08. Inpatients scored higher than outpatients as hypothesised. Construct validity (Pearson's correlation coefficient, r ≥ |0.608|) was shown between the related subscales of IPOS and FACT-G and ESAS-r. Internal consistency was confirmed for total and subscale scores (Cronbach's alpha≥0.84), except for the Communication and Practical Issues subscale (Cronbach's alpha = 0.29-0.65). Inter-rater reliability (Intra-class correlation coefficient [ICC] ≤ 0.43) between patient and staff responses was insufficient. Test-retest reliability was confirmed with Intra-class correlation coefficient ICC = 0.80 (English) and 0.88 (Chinese) for IPOS Total.
Conclusion:
IPOS in English and Chinese showed good validity, good internal consistency, and good test-retest reliability, except for the Communication and Practical Issues subscale. There was poor inter-rater reliability between patients and staff.
... Self-reporting of symptoms by patients themselves is often regarded as the standard for assessment in palliative care in instances such as pain assessments because observers often have different perceptions about the symptoms experienced by patients [22][23][24][25]. Studies comparing palliative care patient self-assessment with ratings by physicians or nurses have shown significant differences in symptoms' rating [26][27][28][29][30], hence the importance of ESAS self-completion. In this randomized comparison, we sought to compare the time requirement of self-completion as compared with assisted completion of the ESAS in patients with advanced cancer. ...
Introduction:
To compare the time duration of self-completion (SC) of the Edmonton Symptom Assessment Scale (ESAS) by patients with advanced cancer (ACPs) versus assisted completion (AC) with a health care professional.
Materials and methods:
In this randomized comparison of ACPs seen in initial consultation at the outpatient Supportive Care Center at MD Anderson, ACPs who have never completed the ESAS at MD Anderson were allocated (1:1) to either SC of the ESAS form versus AC by a nurse. Time of completion was measured by the nurse using a stopwatch. Patients completed the Rapid Estimate of Adult Literacy in Medicine (REALM) test prior to administration of the ESAS. In the SC group, the nurse reviewed the responses to verify that the reported ESAS scores were correct.
Results:
A total of 126 ACPs were enrolled (69 patients to AC and 57 to SC). Seventy-one patients were female, median age was 60 years, and median REALM score was 65. Median (interquartile range) time (in seconds) of SC was significantly less than AC (73 [42.9-89.1] vs. 109 [79.5-136.7], p < .0001). With nurse review time included, median time of SC increased to 117 seconds, which was not significantly different from AC (p = .28). Lower literacy (REALM) score and shortness of breath were significantly associated with increased completion time (p = .007).
Conclusion:
Regular use of ESAS will have minimal impact on clinical time, as it can be completed in about 1 minute and provides a concise yet comprehensive and multidimensional perspective of symptoms that affect quality of life of patients with cancer.
Implications for practice:
Because the Edmonton Symptom Assessment Scale can be completed in less than 2 minutes, hopefully the routine use of this simple yet comprehensive and multidimensional symptom assessment tool will be used at all medical visits in all patients with cancer so that the timely management of symptoms affecting patients' lives and treatment courses can occur, further enhancing personalized cancer care.
... This could be because majority of the staff included in this study were ward nurses in the acute hospital setting, who may be less attuned to the patient's problems and concerns compared to palliative care clinicians surveyed in the other validation studies. For use in this context, where giving training to acute ward nurses to assess palliative care problems and concerns may not feasible, family caregivers could be explored as alternative proxy respondents who could potentially have greater agreement with patient-reported scores compared to healthcare proxies (22,23). As patients at more advanced stages of disease may have reduced physical and mental capacity to self-respond to such questionnaires, it is worthwhile to develop a reliable proxy tool. ...
Context: Measurement of patient-centred outcomes enables clinicians to focus on patient and family priorities and enables quality of palliative care to be assessed.
Objectives: This study aimed to evaluate the validity and reliability of the English and translated Chinese IPOS among advanced cancer patients in Singapore.
Methods: IPOS was forward and backward translated from English into Chinese. Structural validity was assessed by confirmatory factor analysis; known-group validity by comparing inpatients and community patients; construct validity by correlating IPOS with Edmonton Symptom Assessment System-revised (ESAS-r) and Functional Assessment of Cancer Therapy–General (FACT-G); internal consistency by Cronbach’s alpha; inter-rater reliability between patient and staff responses; test-retest reliability of patient responses between two timepoints.
Results: 111 English-responding and 109 Chinese-responding patients participated. The three-factor structure (Physical Symptoms, Emotional Symptoms and Communication and Practical Issues) was confirmed with Comparative Fit Index and Tucker-Lewis-Index > 0.9 and Root Mean Square Error of Approximation < 0.08. Inpatients scored higher than outpatients as hypothesised. Construct validity (Pearson’s correlation coefficient, r≥|0.608|) was shown between the related subscales of IPOS and FACT-G and ESAS-r. Internal consistency was confirmed for total and subscale scores (Cronbach's alpha ≥ 0.84), except for the Communication and Practical Issues subscale (Cronbach’s alpha = 0.29–0.65). Inter-rater reliability (Intra-class correlation coefficient [ICC] ≤ 0.43) between patient and staff responses was insufficient. Test-retest reliability was confirmed with Intra-class correlation coefficient ICC = 0.80 (English) and 0.88 (Chinese) for IPOS Total.
Conclusion: IPOS in English and Chinese showed good validity, good internal consistency, and good test-retest reliability, except for the Communication and Practical Issues subscale. There was poor inter-rater reliability between patients and staff.
... 5 31 The average symptom/problem scores were similar to a study from another SPC unit in Copenhagen, Denmark. 32 The percentage of patients reporting the help they had received as inadequate was generally high and highest concerning inadequate help with physical activities, work and daily activities, coherent with 77% of patients reporting barriers towards attending a physical rehabilitation programme in the municipality. This could point towards a need for individually tailored physical rehabilitation programmes based on needs of patients with CAD, preferences, and physical and psychological status as proposed by Peoples et al and Avancini et al. 5 31 Furthermore, this finding may likely be associated with the high percentage of patients having problems concerning activities of daily living, being below normative values in the physical tests and feeling distressed as seen in other studies. ...
Introduction
An interdisciplinary team approach to patients in specialised palliative care is recommended; however, the composition of the professionals tends to vary, and the roles of physiotherapists and occupational therapists may be underestimated. We aimed to investigate patient-reported unmet needs, which potentially could benefit from physiotherapy and occupational therapy interventions in a specialised palliative care team.
Methods
Adult patients with chronic advanced diseases referred to the Specialised Palliative Care Team at Copenhagen University Hospital, Rigshospitalet were enrolled in the study. The Three-Levels-of-Needs Questionnaire was used as primary outcome to assess symptom/problem intensity, symptom/problem burden and felt needs for 12 commonly reported symptoms/problems for patients referred to a specialised palliative care team. Furthermore, participants’ level of distress, fatigue and physical activity, symptoms of anxiety and depression, and barriers towards the rehabilitation programme were registered with other measures.
Results
In total, 43 of 67 (64%) patients participated. The majority of participants reported severe symptoms/problems concerning fatigue (81%), impaired physical activities (77%), carrying out work and daily activities (77%), pain (72%), and worries (58%). Furthermore, need for help was expressed concerning physical activities (79%), work and daily activities (77%), fatigue (70%), pain (65%), concentration (58%) and worries (51%). On average the patients characterised 6 (out of 12) symptoms/problems as severe.
Conclusion
Patients referred to a specialised palliative care team reported extensive unmet needs concerning physical activities, work and daily activities, fatigue, pain, concentration and worries. Unmet needs that potentially could be alleviated by physiotherapists or occupational therapists implemented in the interdisciplinary team.
... It has been shown that not all symptoms in advanced cancer patients admitted to palliative care are recognized by the health care professionals. Systematic symptom assessment has been proposed as a solution to this problem [1][2][3]. Therefore, starting in 2010, cancer patients in all specialized palliative care (SPC) services in Denmark have been invited to complete the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire-Core-15-Palliative Care questionnaire (EORTC QLQ-C15-PAL) at the start of SPC. The questionnaire assesses different quality of life aspects of cancer patients in palliative care, i.e., nine symptoms and problems and overall QOL. ...
Background:
There is an increased interest in the analysis of large, national palliative care data sets including patient reported outcomes (PROs). No study has investigated if it was best to include or exclude data from services with low response rates in order to obtain the patient reported outcomes most representative of the national palliative care population. Thus, the aim of this study was to investigate whether services with low response rates should be excluded from analyses to prevent effects of possible selection bias.
Methods:
Data from the Danish Palliative Care Database from 24,589 specialized palliative care admittances of cancer patients was included. Patients reported ten aspects of quality of life using the EORTC QLQ-C15-PAL-questionnaire. Multiple linear regression was performed to test if response rate was associated with the ten aspects of quality of life.
Results:
The score of six quality of life aspects were significantly associated with response rate. However, in only two cases patients from specialized palliative care services with lower response rates (< 20.0%, 20.0-29.9%, 30.0-39.9%, 40.0-49.9% or 50.0-59.9) were feeling better than patients from services with high response rates (≥60%) and in both cases it was less than 2 points on a 0-100 scale.
Conclusions:
The study hypothesis, that patients from specialized palliative care services with lower response rates were reporting better quality of life than those from specialized palliative care services with high response rates, was not supported. This suggests that there is no reason to exclude data from specialized palliative care services with low response rates.
... 40 This study confirms the importance of assessing symptoms/problems systematically at the start of SPC since many of these patients are troubled by several symptoms/problems at severe levels and previous studies have indicated that symptoms/problems may be overlooked. [41][42][43] ...
Background
Patients referred to specialised palliative care are troubled by symptoms/problems, but more knowledge is needed on the level and frequency of symptoms/problems. It is also uncertain how gender, age and cancer diagnosis, respectively, are associated with symptoms/problems.
Aims
To describe symptoms/problems in patients with cancer at the start of specialised palliative care, and to study how age, gender and cancer diagnosis were associated with symptoms/problems.
Design
A register-based study including data from the Danish Palliative Care Database.
Setting/Participants
Patients with cancer who reported their symptoms/problems using the European Organisation for Research and Treatment of Cancer Quality of Life Questionaire-Core-15-Palliative Care (EORTC QLQ-C15-PAL) at the start of specialised palliative care were included. Ordinal logistic regression was performed to test if gender, age and cancer diagnosis were associated with each symptom/problem.
Results
31 771 patients with cancer were included in the study. The most prevalent and severe symptoms/problems were pain, appetite loss, fatigue, poor physical function and poor quality of life. Gender, age and cancer diagnosis were significantly associated with most symptoms/problems. The strongest associations between symptoms/problems and gender and age, respectively, were increased risk of nausea in women, as well as increased risk of poor physical function and reduced risk of sleeplessness and pain with increasing age. Patients with brain/central nervous system cancer had the lowest risk of symptoms but the highest risk of poor physical function.
Conclusion
At the start of specialised palliative care, patients with cancer experience severe levels of symptoms, poor physical function and poor quality of life. Age, gender and diagnosis were significantly associated with most symptoms/problems, but the strength and direction of the associations differed across symptoms/problems.
... Although the available evidence has shown that the number of symptoms reported voluntarily is lower than if systematic assessment How is the information from the EORTC QLQ-C15-PAL and WISP integrated into the clinical workflow in Denmark? Following our previous results demonstrating that clinicians may overlook S/Ps if systematic assessment is not used [38,39], it was decided at the launch of DPD in 2010 to make the initial symptom assessment using the EORTC QLQ-C15-PAL + WISP a mandatory national quality indicator. Clinicians across the country have adopted this routine. ...
Purpose
Patients in palliative care are willing to answer short questionnaires, like the EORTC QLQ-C15-PAL; however, patients may suffer from other symptoms and problems (S/Ps) not covered by such questionnaires. Therefore, to identify which other S/Ps patients experience, in addition to those already included in the EORTC QLQ-C15-PAL, we developed a brief instrument to supplement this questionnaire named WISP (Write In three Symptoms/Problems), permitting patients to report 1–3 additional S/Ps and their severity. We aim to investigate the nature, prevalence, and severity of S/Ps reported on WISP.
Methods
A register-based study with data obtained from the Danish Palliative Care Database. This study included adults with advanced cancer admitted to specialized palliative care in Denmark, who reported S/Ps on WISP. S/Ps were categorized qualitatively, and their prevalence and severity were calculated.
Results
Of the 5447 patients who completed the EORTC QLQ-C15-PAL, 1788 (32.8%) reported at least one symptom/problem using WISP. In total, 2796 S/Ps were reported; 24.8% were already covered by EORTC QLQ-C15-PAL; 63.6% were new, 10.1% were diagnoses and 1.6% could not be coded. S/Ps already covered and new were grouped into 61 categories. The most prevalent S/Ps reported were (in decreasing order) pain, edema, dizziness, impaired physical or emotional function, cough, and sweats. Overall, 85% of the S/Ps were rated as moderate to severe.
Conclusions
The WISP instrument strongly improves the recognition of S/Ps by combining standardization with individualization. We recommend its use for comprehensive symptom assessment alongside the EORTC QLQ-C15-PAL, and potentially also alongside the EORTC QLQ-C30.
... Tidligere forskning • • • Internasjonal forskning har vist at det er liten sammenheng mellom sykepleiernes opplevelse av pasientens symptomer og pasientens egentlige symptombilde (4). Sykepleiernes kunnskaper om pasientens symptombilde kan bedres ved hjelp av systematiske screeningverktøy, saerlig hvis informasjonen fra slike verktøy inkluderes i sykepleiedokumentasjonen (5). ...
... During routine follow-up visits, health care providers do not always gain insight into what the patients perceive as their most troublesome symptoms [28,29]. Detailed knowledge of symptoms and disease burden is a prerequisite for targeted treatment and symptom relief. ...
Background: Chronic non-malignant lung diseases such as chronic obstructive pulmonary disease (COPD) and interstitial lung diseases (ILD) result in reduced quality of life (QoL), a high symptom burden and reduced survival. Patients with chronic non-malignant lung disease often have limited access to palliative care. The symptom burden and the QoL of these patients resembles patients with cancer and the general palliative approach is similar. However, the disease trajectory is often slow and unpredictable, and the palliative effort must be built on accessibility, continuity and professional competences. The Danish Health Authority as well as the WHO recommends that there is access to palliative care for all patients with life-threatening diseases regardless of diagnosis. In 2011, the Danish Health Authority requested that the national medical societies would to formulate guidelines for palliation.
Methods: In 2015, a group of members of the Danish Respiratory Society (DRS) was appointed for this purpose. It was composed of experienced ILD and COPD researchers as well as clinicians from different parts of Denmark. A literature review was made, a draft was prepared, and all recommendations were agreed upon unanimously.
Results: The Danish version of the position paper was finally submitted for review and accepted by all members of DRS.
Conclusion: In this position paper we provide recommendations on the terminology of chronic and terminal lung failure, rehabilitation and palliative care, advanced care planning, informal caregivers and bereavement, symptom management, the imminently dying patient, and organization of palliative care for patients with chronic non-malignant lung diseases.
... The aim of the present study was to report the implementation, acceptability and feasibility of a high-frequency proxy-based symptom assessment instrument in palliative care, to describe data concerning the psychometric properties of the instrument and to present a framework for the evaluation of such an approach. Systematic proxy-based assessment of symptom burden in palliative care obtained by nurses can be similar in accuracy to patient-reported outcomes and has special value in low-functioning or confused patients [9,35]. ...
Background:
The implementation of standardised, valid and reliable measurements in palliative care is subject to practical and methodological challenges. One aspect of ongoing discussion is the value of systematic proxy-based assessment of symptom burden in palliative care. In 2011, an expert-developed proxy-based instrument for the assessment of symptom burden in palliative patients, the Palliative Symptom Burden Score (PSBS), was implemented at the Specialised Palliative Care Unit of the University Medical Centre in Dusseldorf, Germany. The present study investigated its feasibility, acceptance and psychometric properties.
Methods:
The PSBS was rated by nursing staff three times a day over 5 years (N = 820 patients). Feasibility and nurses' acceptance of PSBS were analysed. Structural validity was investigated by principal component analysis. Construct validity was examined via cross-validation with the Hospice and Palliative Care Evaluation checklist. Discriminative validity of the PSBS was analysed by means of Kruskal-Wallis test of patients' performance score. Reliability of the PSBS was evaluated by internal consistency analysis, test-retest and split-half-reliability. Inter-rater reliability was investigated by observer agreement of nurses' ratings of symptom burden within a day. Sensitivity to change was analysed by Wilcoxon test with repeated measures of the PSBS before and after palliative complex treatment.
Results:
A high degree of acceptance and the feasibility of a high-frequency proxy-based symptom burden assessment approach were demonstrated. There were low rates of missing values and no indications of the adoption of prior ratings. PSBS in its present form demonstrates good structural and construct validity (rs = .27-.79, p's < .001) and high sensitivity to changes in symptom burden (p's < .01, except sweating), but unsatisfactory reliability (α = .41-.67; test-retest: rs = .30-.88; p's < .001; split-half: rs = .69; p < .001; inter-rater: n.s.).
Conclusions:
The study presents a framework for the post hoc validation of an already existing documentation tool in palliative care. This study supports the notion that PSBS might not be reflective of an overall construct and will therefore require further development and critical comparison to other already established symptom burden instruments in palliative care.
... There is evidence that not all the patients' symptoms and problems are detected if a systematic assessment is not conducted. [4][5][6] This motivates the fourth quality indicator, which requests that the patient has completed the EORTC QLQ-C15-PAL questionnaire at the day of first contact with SPC or up to 3 days before. The EORTC QLQ-C15-PAL 3 is an abbreviated version of the internationally most widely used instrument assessing healthrelated quality of life in cancer patients, the EORTC QLQ-C30, which was developed by the European Organization for Research and Treatment of Cancer. ...
Aims
The aim of the Danish Palliative Care Database (DPD) is to monitor, evaluate, and improve the clinical quality of specialized palliative care (SPC) (ie, the activity of hospital-based palliative care teams/departments and hospices) in Denmark.
Study population
The study population is all patients in Denmark referred to and/or in contact with SPC after January 1, 2010.
Main variables
The main variables in DPD are data about referral for patients admitted and not admitted to SPC, type of the first SPC contact, clinical and sociodemographic factors, multidisciplinary conference, and the patient-reported European Organisation for Research and Treatment of Cancer Quality of Life Questionaire-Core-15-Palliative Care questionnaire, assessing health-related quality of life. The data support the estimation of currently five quality of care indicators, ie, the proportions of 1) referred and eligible patients who were actually admitted to SPC, 2) patients who waited <10 days before admission to SPC, 3) patients who died from cancer and who obtained contact with SPC, 4) patients who were screened with European Organisation for Research and Treatment of Cancer Quality of Life Questionaire-Core-15-Palliative Care at admission to SPC, and 5) patients who were discussed at a multidisciplinary conference.
Descriptive data
In 2014, all 43 SPC units in Denmark reported their data to DPD, and all 9,434 cancer patients (100%) referred to SPC were registered in DPD. In total, 41,104 unique cancer patients were registered in DPD during the 5 years 2010–2014. Of those registered, 96% had cancer.
Conclusion
DPD is a national clinical quality database for SPC having clinically relevant variables and high data and patient completeness.
... There are many barriers to adequate pain management [7][8][9], including poor patient-provider communication [7]. Although pain is one of the most often discussed symptoms in the clinical setting [10,11], some patients' pain may go unrecognized, and the level of pain may be underestimated by the doctor [6]. Patients may choose not to tell their doctor about it because they do not want to burden the doctor with too many issues or because they are concerned about side effects of or addiction to pain medication [7][8][9]. ...
Purpose
To explore (1) the information obtained from related but conceptually different approaches to pain assessment and (2) the extent to which the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire-Core 30 (EORTC QLQ-C30) can be used as a screening tool to predict patient-reported need for pain relief.
Methods
Cancer patients randomly sampled from 56 hospital departments were included. Questionnaire items assessed patients’ (a) pain experience using the EORTC QLQ-C30 pain scale and its two pain items separately (pain intensity and pain interference) and (b) pain burden and (c) need for pain relief using the Three-Levels-of-Needs Questionnaire (3LNQ).
Results
Of the 2364 patients contacted by mail, 1447 (61 %) completed the questionnaires. Among these, 51 % reported at least “a little” pain on the pain intensity item. The number of patients reporting pain to be a burden was similar, and pain experience and pain burden were highly correlated (correlation coefficients ranged from 0.85 to 0.91). Pain experience and pain burden were moderately correlated with the need for pain relief. A receiver-operating characteristic (ROC) curve analysis showed that the EORTC QLQ-C30 discriminated between patients with and without a need for pain relief to an acceptable degree (area under the curve (AUC) 0.73–0.77). The cut-point a little gave a sensitivity of 84 % and specificity of 59 % for the item “Have you had pain?” and a sensitivity of 72 % and a specificity of 72 % for the pain scale.
Conclusions
The majority of patients who experienced pain felt it to be a problem. Pain experience and pain burden were substantially related to need for pain relief, and the latter could be predicted from the EORTC QLQ-C30.
... For example, in a study by Wagner et al., of the 10 most important symptoms identified by patients with multiple myeloma, only one symptom was also among the list identified by expert clinicians [8]. Likewise, often symptoms that patients would report as either concerning or significantly affecting their QOL do not appear in their medical or nursing record [9,10]. It is not clear if the difference in reporting occurs because patients do not report or adequately express the severity of the symptom bothering them or if the clinician did not deem the symptoms relevant or bothersome enough to include in the medical record [7]. ...
Purpose:
Tools to collect patient-reported outcome measures (PROMs) are frequently used in the healthcare setting to collect information that is most meaningful to patients. Due to discordance among how patients and healthcare providers rank symptoms that are considered most meaningful to the patient, engagement of patients in the development of PROMs is extremely important. This review aimed to identify studies that described how patients are involved in the item generation stage of cancer-specific PROM tools developed for cancer patients.
Methods:
A literature search was conducted using keywords relevant to PROMs, cancer, and patient engagement. A manual search of relevant reference lists was also conducted. Inclusion criteria stipulated that publications must describe patient engagement in the item generation stage of development of cancer-specific PROM tools. Results were excluded if they were duplicate findings or non-English.
Results:
The initial search yielded 230 publications. After removal of duplicates and review of publications, 6 were deemed relevant. Fourteen additional publications were retrieved through a manual search of references from relevant publications. A total of 13 unique PROM tools that included patient input in item generation were identified. The most common method of patient engagement was through qualitative interviews or focus groups.
Conclusions:
Despite recommendations from international groups and the emphasized importance of incorporating patient feedback in all stages of development of PROMs, few unique tools have incorporated patient input in item generation of cancer-specific tools. Moving forward, a framework of best practices on how to best engage patients in developing PROMs is warranted to support high-quality patient-centered care.
... La escasa bibliografía existente acerca de las enfermas metastásicas, muestra que son pacientes que presentan síntomas no resueltos como el dolor, cansancio, disnea, insomnio y pérdida de apetito (17,18) y altos niveles de malestar emocional, especialmente las pacientes con dolor (19) y necesidades cotidianas no cubiertas como el trabajo doméstico, asistencia financiera y ayuda para el transporte (20) . En términos de calidad de vida, más de una cuarta parte de las pacientes metastásicas expresan un peor estado de salud y más de la mitad expresan estar fatigadas; el dolor y el insomnio también las afecta, aunque lo expresan en menor medida. ...
Metastasic breast cancer patients live longer thanks to the lasts improvements in their treatment. Nonetheless, there exist few studies focused on the quality of live (QoL) of those patients. The aim of our study is to improve the knowledge of metastatic breast cancer patient’s quality of life, for this purpose we have elaborated an open questionnaire as a complement to the QoL tests available. Material and methods: From June 2011 to February 2012 we conducted 24 interviews with a questionnaire based on medical and psychosocial items. Results: 58% of patients considered that treatment improved their QoL, an 83.3% expressed that the benefit of the treatment compensated for the secondary effects, complementary tests give them relieve, control over the illness and information. Only two thirds of those patients expressed to have social support, and one third said to share their grief with nobody. The main concerns expressed by the patients were in order of value: their family, loss of self-caring, fear about the future and to the illness progression. Half of the patients think that the disease has brought some value to their lives such as improving their scale of values and to improve empathy to somebody else’s problems. Conclusion: Metastatic breast cancer patient’s attitude is admirable in the way they are adapted to such a wearing situation. Nonetheless it’s imperative to offer them the help and the medical information they need to compensate for their solitude in front of the illness. © 2014, Spanish Association of Anglo-American Studies. All rights reserved.
... Diese reichen von Beeinträchtigungsskalen bis hin zu Instrumenten zur Messung von gesundheitsbezogener Lebensqualität [Welsh et al. 2003]. Verschiedene Studien haben aufgezeigt, wie wichtig und wertvoll die Selbstbewertung von Krankheiten durch Patienten ist und welche Einflüsse dies auf die weitere Behandlung hat [Strömgren et al. 2001]. Des Weiteren konnten sie aufzeigen, dass die Selbsteinschätzung von Patienten ausreichend valide und zuverlässig für die weitere therapeutische Entscheidungsfindung ist. ...
Mobile Electronic-Data-Capture-(EDC-)Systeme erlauben eine schnelle, einfache und kostengünstige Erfassung von Patientendaten in Echtzeit. Dieser Beitrag beschreibt die Entwicklung, Implementierung und Evaluierung eines EDC-Systems zur Selbstbewertung des Gesundheitsstatus. Patienten mit feinmotorischen Störungen akzeptierten das System und bewerteten es als handhabbar und effektiv in der Dokumentation des aktuellen Gesundheitszustands. Aktive Teilnahme und Integration von Patienten führten zu einer besseren Dokumentation und Datengrundlage für die medizinische Behandlung und Pflege.
... Furthermore, we have shown that almost all the symptoms identified by experts as the most important to assess in treating patients with brain tumors can be derived from a well-established multidimensional HRQOL questionnaire, Functional Assessment of Chronic Illness Therapy (FACIT) measurement system [13]. Patient ratings of symptom relevance and severity of symptoms and concerns, however, especially in the psychological realm, may differ from those of providers [19][20][21][22]. The Food and Drug Administration (FDA) presents a similar observation and guidance [23], that definitions of meaningful symptom outcomes should include patient-derived definitions including cognitive interviewing and carefully designed patient-reported outcome measures. ...
... The results of the rating scales and questionnaires are then used to adapt and optimize therapeutic options. Several studies have evaluated the effectiveness of patient self-rating for different kinds of diseases (Strömgren et al., 2001). They show that the validity and reliability are of a sufficient level in order to serve as a ba-sis for treatment decision-making. ...
In this paper, we present a Near Field Communication (NFC)-based electronic data capture prototype for patient self-reported rating scales. Such scales are valuable feedback for medical treatment and care processes. As traditional paper-based questionnaires are time-and cost-consuming and may be affected by low patient compliance, our prototype allows patient monitoring and electronic data acquisition directly from the patients home. It enables real time representation and analysis of patient data and thus allows direct medical intervention by physicians. In developing the prototype, we followed a design science approach, developed design goals for the special case of patients suffering from impaired motor skills, and tested the prototype in a field study over the course of twelve weeks. We chose NFC since the interaction paradigm is intuitive and quickly learned, without prior knowledge being necessary. Our results indicate that NFC is almost as simple as filling out a paper-based questionnaire. During the study patients used the prototype autonomously and with minimal errors. Further, NFC technology was perceived as very intuitive and the information quality of each patients health status could be improved. Based on the findings we derive recommendations for future research and applications of NFC based electronic data capture systems.
... Furthermore, we have shown that almost all the symptoms identified by experts as the most important to assess in treating patients with brain tumors can be derived from a well-established multidimensional HRQOL questionnaire, Functional Assessment of Chronic Illness Therapy (FACIT) measurement system [13]. Patient ratings of symptom relevance and severity of symptoms and concerns, however, especially in the psychological realm, may differ from those of providers [19][20][21][22]. The Food and Drug Administration (FDA) presents a similar observation and guidance [23], that definitions of meaningful symptom outcomes should include patient-derived definitions including cognitive interviewing and carefully designed patient-reported outcome measures. ...
This study's primary goals included identifying the highest priority symptoms of patients with advanced brain tumors on treatment, comparing patient priority ratings with those of oncology experts, and constructing a brief symptom index using combined input to assess these symptoms and concerns.
Fifty patients with advanced primary brain tumors and 10 physician experts were recruited from the National Comprehensive Cancer Network institutions and community support agencies. By using a 40-item symptom checklist, patients first selected up to 10 of the most important symptoms/concerns to monitor when assessing the value of drug treatment for brain tumors, then nominated up to 5 of the very most important concerns, and finally generated additional symptoms/concerns. By using the same checklist as patients, physicians rated each symptom/concern as disease- or treatment-related.
By using the combined input, a 24-item National Comprehensive Cancer Network/Functional Assessment of Cancer Therapy-Brain Symptom Index (NFBrSI-24) was developed. The NFBrSI-24 showed good internal consistency (α = 0.84), significantly differentiated patients with different levels of functional status (F2,47 = 8.21; P < .001), and demonstrated good convergent validity with the Functional Assessment of Cancer Therapy-General functional, physical, social, emotional, and brain tumor-specific concerns (ρ = 0.59, 0.57, 0.40, 0.35, and 0.50, respectively; Ps < 0.05).
The NFBrSI-24, an index of the symptoms in advanced brain tumors perceived as most important by both patients and clinicians, improves upon existing measures of brain tumor symptoms through better satisfaction of regulatory requirements for measure development. The findings suggest good reliability and validity, indicating that the NFBrSI-24 is a promising brief assessment of high-priority advanced brain tumor symptoms for research and clinical settings.
... Two widely reported barriers are inadequate or nonsystematic symptom assessment (6)(7)(8)(9)(10) and limited patient-provider communication about symptoms (1,11,12). Clinicians vary in their ability to elicit information about patient symptoms (13)(14)(15)(16) and systematically underestimate them (17)(18)(19)(20). Patients often forget to report important medical information (21,22) and fail to accurately report symptom levels (23). ...
Lung cancer patients experience multiple, simultaneous symptoms related to their disease and treatment that impair functioning and health-related quality of life (HRQL). Computer technology can reduce barriers to nonsystematic, infrequent symptom assessment and potentially contribute to improved patient care.
To evaluate the efficacy of technology-based symptom monitoring and reporting in reducing symptom burden in patients with advanced lung cancer.
This was a prospective, multisite, randomized controlled trial. Two hundred fifty-three patients were enrolled at three sites and randomized to monitoring and reporting (MR) or monitoring alone (MA). Patients completed questionnaires at baseline, 3, 6, 9, and 12 weeks and symptom surveys via interactive voice response weekly for 12 weeks. MR patients' clinically significant symptom scores generated an e-mail alert to the site nurse for management. The primary endpoint was overall symptom burden; secondary endpoints included HRQL, treatment satisfaction, symptom management barriers, and self-efficacy.
This randomized controlled trial failed to demonstrate efficacy of symptom monitoring and reporting in reducing symptom burden compared with monitoring alone in lung cancer. HRQL declined over 12 weeks in both groups (P < 0.006 to P < 0.025); at week 12, treatment satisfaction was higher in MA than MR patients (P < 0.012, P < 0.027). Adherence to weekly calls was good (82%) and patient satisfaction was high.
Feasibility of using a technology-based system for systematic symptom monitoring in advanced lung cancer patients was demonstrated. Future research should focus on identifying patients most likely to benefit and other patient, provider, and health system factors likely to contribute to the system's success.
... Studies have shown their importance in measuring the impact of different diseases and their treatment on patients [12]. The effectiveness of patient self-rating for different kinds of diseases has been evaluated [34], showing that validity and reliability are of a sufficient level in order to serve as a basis for treatment decision-making. Follow-up costs of inadequate treatment are hard to measure, and the negative impact on patients' quality of life is manifest. ...
We present an electronic data capture (EDC) system based on Near Field Communication (NFC). NFC is an easy way for self-reporting of health status information. As traditional paper-based questionnaires are time- and cost-consuming and may be affected by low patient compliance, our EDC system allows patient monitoring and electronic data acquisition directly from the patient's home. It enables real time representation and analysis of patient data and thus allows direct medical intervention by physicians. The results of a field test indicate that NFC is almost as simple as filling out a paper-based questionnaire. During the study patients used the prototype autonomously and with minimal errors. Further, NFC technology was perceived as very intuitive and the information quality of each patient's health status could be improved. Based on the findings we derive recommendations for future research and applications of NFC based electronic data capture systems.
... patients may have difficulty understanding the terminology and correct use of the ESAS [9,[13][14][15]. Additionally, numerous studies have demonstrated the lack of agreement between HCP assessment of symptoms and patient self-report [13,[16][17][18][19]. In one study, patients indicated that the presence of HCPs would help to clarify uncertainties and could contribute to accuracy and efficiency of the ESAS [20]. ...
The ESAS is a clinical symptom assessment tool developed for patients receiving palliative care for pain and symptom control. Recent studies have indicated that patients have difficulty understanding terminology and correct use of the ESAS, and that they appreciate the presence of a health care provider (HCP) to assist with ESAS completion. As appropriate assessment translates into effective treatment, it is important that HCPs have a good understanding of the tool. The purpose of this study was to assess HCPs' use, knowledge, and training needs of the ESAS.
One hundred ninety-three HCPs in palliative care and chronic pain, who used the ESAS, were invited to participate in a survey.
The response rate was 43 % (n = 83), with 62 % nurses, 26 % physicians, and 12 % other specialties. Most participants were palliative care specialists (79 %). The majority (77 %) had a good understanding of the ESAS terms. Knowledge problems included distinguishing tiredness and drowsiness (25 %), interpreting shortness of breath as a combination of subjective and objective symptoms (19 %), not indicating current symptom level (14 %), and reverse scoring of well-being (13 %) and appetite (9 %). Reported challenges were misinterpretation of some ESAS terms, assessing patients with impaired communication, and lack of time and reliability of caregiver assessments. Participants offered suggestions regarding how their knowledge and use of the ESAS could be improved.
Suggestions for improving ESAS administration and training were to include term definitions and examples of how to ask about terms that might be challenging for patients. Furthermore, initial and ongoing training sessions might help to clarify issues with the tool.
... Clinicians rated weight loss as most important [12], yet it ranked 17th among patients. This discrepancy is consistent with previous work [26][27][28][29][30]. Clinicians may more readily focus on symptoms that suggest disease progression or factors that may delay or reduce treatment (e.g., bone pain and fever), whereas patients may more readily identify psychosocial symptoms (e.g., worry and ability to work) as most relevant. ...
There is a need for a brief symptom index for advanced kidney cancer that includes perspectives of both patients and clinicians and is consistent with the Food and Drug Administration's guidance for patient-reported outcome measures. This study developed and examined the preliminary reliability and validity of the new National Comprehensive Cancer Network/Functional Assessment of Cancer Therapy (FACT)-Kidney Symptom Index 19.
Fifty patients with advanced kidney cancer provided open-ended and survey responses ranking their most important symptoms. Responses were reconciled with published clinician reports of the most important symptoms. Ten experienced oncologists rated symptoms as disease- or treatment-related. Patients completed quality-of-life and performance status measures.
A 19-item index was produced from symptoms that were rated as most important by patients or clinicians. It includes three subscales: disease-related symptoms (DRS), treatment side effects (TSE), and general function and well-being (FWB). Internal consistency was good for the full instrument (α = 0.83), the DRS subscale (α = 0.76), and the FWB subscale (α = 0.78) but lower for the TSE subscale (α = 0.59). Convergent validity was demonstrated through correlations with the FACT-General. Patients with differing performance status were distinguished by the total score (F2,47 = 17.37; P < .0001), the DRS subscale (F2,47 = 14.22; P < .0001), and the FWB subscale (F2,47 = 13.40; P < .0001) but not the TSE subscale (F2,47 =1.48; P = 0.2380).
The National Comprehensive Cancer Network/FACT-Kidney Symptom Index 19 combines symptoms deemed most important by patients and clinicians. Preliminary evidence suggests that the total score and DRS and FWB subscales are reliable and valid as summary indexes. The TSE subscale may be least relevant given the advent of newer therapies.
Objectives
Few studies have examined whether access to, and quality of, specialised palliative care changed during the COVID-19 pandemic. This study investigated changes in access to and quality of specialised palliative care during the pandemic in Denmark compared to previously.
Methods
An observational study using data from the Danish Palliative Care Database combined with other nationwide registries was conducted, including 69 696 patients referred to palliative care services in Denmark from 2018 to 2022. Study outcomes included number of referrals and admissions to palliative care, and the proportions of patients fulfilling four palliative care quality indicators. The indicators assessed admissions among referred, waiting time from referral to admission, symptom screening using the European Organisation for Research and Treatment of Cancer Quality of Life Questionaire-Core-15-Palliative Care (EORTC QLQ-C15-PAL) questionnaire at admission, and discussion at multidisciplinary conference. Logistic regression analysed whether the probability of fulfilling each indicator differed between the pandemic period and pre-pandemic, while adjusting for possible confounders.
Result
Number of referrals and admissions to specialised palliative care were lower during the pandemic. The odds for being admitted within 10 days of referral was higher during the pandemic (OR: 1.38; 95% CI: 1.32 to 1.45) whereas the odds for answering the EORTC questionnaire (0.88; 95% CI: 0.85 to 0.92) and for being discussed at multidisciplinary conference (0.93; 95% CI: 0.89 to 0.97) were lower compared with pre-pandemic.
Conclusions
Fewer patients were referred to specialised palliative care during the pandemic, and fewer were screened for palliative care needs. In future pandemics or similar scenarios, it is important to pay special attention to referral rates and to maintain the same high level of specialised palliative care.
Adult participants with HNC commencing radiation therapy completed the State Trait Anxiety Inventory (STAI) tool before their mask making and CT planning session, and once a week before treatment. Their treating RTs independently rated their perception of the patient's anxiety at each of these time points. Paired samples t-tests were conducted to examine concordance between patient and RT responses.
Purpose:
The purpose of this study was to classify elements of patients' discomfort in the resuscitation room after open or laparoscopic abdominal surgery as per health care professionals' perceptions.
Design:
A prospective cross-sectional study at a tertiary hospital in Spain.
Methods:
Resuscitation room nurses administered the Postoperative Discomfort Inventory to physicians and nurses with >1 year experience working closely with patients who had undergone abdominal surgery, asking them to score nine items related to patients' discomfort in the first 8 hours after surgery on an 11-point scale (0 = absent to 10 = very severe). Interobserver agreement among proxy reporters was measured with the Spearman's ρ; correlations >0.35 was considered adequate agreement.
Findings:
Of 125 eligible professionals, 116 (93%) participated (63 [54%] nurses and 53 [46%] physicians; mean age, 38 ± 12 years; 86 [74%] women). Professionals' perception of discomfort differed significantly between patients undergoing open surgery and those undergoing laparoscopic surgery; after open surgery, the most common types were pain (7.1 ± 1.8), movement restriction (7 ± 1.75), and dry mouth (6.6 ± 2.6), whereas after laparoscopic surgery, the most common types were dry mouth (5.85 ± 2.8), abdominal bloating (5.3 ± 2.5), and pain (5 ± 2.2). The Spearman's ρ correlations were inadequate for all items except for dry mouth in open surgery (r = 0.40).
Conclusions:
Pain, movement restriction, abdominal bloating, and dry mouth were the main causes of discomfort. Our findings highlight the need to be vigilant for all manifestations of discomfort after abdominal surgery to enable timely treatment.
Background. Patients with advanced cancer require treatment and the fulfillment of their needs, based on the results of assessments regarding their physical symptoms, psychological and spiritual needs. Palliative care should be delivered with a person-centered care approach. It is important to consider the patients’ reports of their carings’ outcomes. Comparisons between the patients’ and nurses’ perceptions of palliative care outcomes can be used to improve the quality of palliative care.Objective. The purpose of this study is to compare the patients’ and nurses’ perceptions of palliative care outcomes during the patients’ hospitalization.Methods. This is a comparative descriptive study with a cross-sectional design. Data were collected from May to June 2018 from a total of 106 patients with advanced cancer, and 61 nurses. The versions of the Palliative care Outcome Scale (POS) for patients and nurses were used to measure the palliative care outcomes of the patients’ and nurses’ perceptions.Result. The study found a significant difference between the perceptions of the patients and nurses for the palliative care outcomes, particularly in the information availability domain (p = 0.001), the other symptoms domain (p = 0.029), and the anxiety feelings domain (p = 0.030), while the other seven domains had no significant differences between both groups (p > 0.05).Conclusion. The anxiety feelings, other symptoms and information availability domains are the aspects of palliative care which need more attention from health care providers, especially nurses, when caring for patients with advanced cancer.
Method:
A prospective longitudinal study was conducted from January 2012 to June 2015 using dyads of patients' and nurses' reported outcome measures, collected in daily hospice practice in the first three weeks after admission. Main outcomes were symptom intensity and well-being, measured using the Utrecht Symptom Diary (USD) and USD-Professional (USD-P). Absolute concordance was the proportion of dyads with no difference in scores between USD and USD-P per week after admission. For agreement beyond chance, the squared weighted Kappa for symptom intensity, and the one-way agreement intraclass correlation coefficient for well-being were used.
Results:
The most prevalent symptoms, fatigue, dry mouth and anorexia, also had the highest intensity scores assessed by patients and nurses. Symptom intensity was underestimated more frequently than overestimated by the nurses. The absolute concordance was fair to good (35% - 69%). Agreement beyond chance was low to fair (0.146 - 0.539) and the ICC for well-being was low (0.25 - 0.28). Absolute concordance and agreement beyond chance did not improve over time.
Conclusion:
Concordance between patients' and nurses' assessment of symptom prevalence is good and both patients and nurses reveal identical symptoms as most and least prevalent and intense. However, nurses tend to underestimate symptom intensity. Concordance between patients and nurses symptom intensity scores is poor and does not improve over time.
Mobile Electronic Data Capture (EDC) Systeme erlauben eine schnelle, einfache und kostengünstige Erfassung von Patientendaten in Echtzeit. Dieser Beitrag beschreibt die Entwicklung, Implementierung und Evaluierung eines EDC-Systems zur Selbstbewertung des Gesundheitsstatus. Die gewonnen Erkenntnisse werden generalisiert und in Form von Design Patterns für die Entwicklung zukünftiger Anwendungen festgehalten. Die Ergebnisse des Feldtests zeigen, dass Patienten mit feinmotorischen Störungen das System akzeptieren, und bewerteten es als handhabbar und effektiv in der Dokumentation des aktuellen Gesundheitszustandes. Aktive Teilnahme und Integration von Patienten führten zu einer besseren Dokumentation und Datengrundlage für die medizinische Behandlung und Pflege.
The aim of this study was to investigate the feasibility and acceptability of a repeated measurement of 5 major side effects (pain, nausea, vomiting, anxiety, and fatigue) experienced by patients during an entire course of chemotherapy. Forty-nine inpatients receiving intravenous chemotherapy in the medical oncology department of the Institut Paoli-Calmettes (Marseilles, France) were included in the study. At the study entry and every 12 hours from beginning of chemotherapy course, nurses assessed symptoms using Visual Analogic Scales (except for vomiting measured in number of episodes). Patients' pretreatment characteristics and their degree of satisfaction with nursing assessment were also recorded. The mean number of symptom measures was 2.9 in courses of less than 3 days, 5.4 in courses of 3 days, and 7.5 in courses of more than 3 days. Symptom patterns varied according to length of course. Furthermore, patients' pretreatment characteristics (age, sex, marital status, education level, type of cancer) had an impact on symptom scores at baseline and during treatment. About 80% of patients judged the nursing assessment as not constraining and 55% considered that its impact on their care was positive. This study demonstrates that repeated measurement of chemotherapy side effects was feasible and provide useful information for symptom management that might increase patient treatment satisfaction.
Objectives:
A prospective study of symptom assessments made by a healthcare professional (HCP; named nurse) and an informal caregiver (ICG) compared with that of the patient with a terminal diagnosis. To look at the validity of HCP and ICG as proxies, which symptoms they can reliably assess, and to determine who is the better proxy between HCP and ICG.
Methods:
A total of 50 triads of patient (>65 years) in the terminal phase, ICG and named nurse on medical wards of an acute general hospital. Assessments were made using the patient and caregiver versions of the palliative outcome scale (POS), all taken within a 24 h period. Agreement between patient-rated, ICG-rated and HCP-rated POS and POS for symptoms (POS-S) was measured using weighted-κ statistics. Demographic and clinical data on each group of participants were collected.
Results:
ICG assessments have higher agreement with those of the patient than HCP. Better agreement in both groups was found for physical symptoms, and best agreement was for pain. The worst agreements were for psychological symptoms, such as anxiety and depression, and for satisfaction with information given. Psychological symptoms are overestimated by both ICG and HCP.
Conclusions:
ICGs are more reliable proxies than HCPs. A trend for overestimation of symptoms was found in both groups which may lead to undervaluation of the quality of life by proxy and overtreatment of symptoms. This highlights the need to always use the patient report when possible, and to be aware of the potential flaws in proxy assessment. Reasons for overestimation by proxies deserve further research.
Context
Managing “symptom clusters,” or multiple concurrent symptoms in patients with advanced cancer remains a clinical challenge. The optimal processes constituting effective management of symptoms clusters remain uncertain.
Objectives
To describe the attitudes and strategies of clinicians in managing multiple co-occurring symptoms in patients with advanced cancer.
Methods
Semi-structured interviews were conducted with 48 clinicians (palliative care physicians [n=10], oncologists [n=6], general practitioners [n=6], nurses [n=12], and allied health providers [n=14]), purposively recruited from two acute hospitals, two palliative care centers, and four community general practices in Sydney, Australia. Transcripts were analyzed using thematic analysis and adapted grounded theory.
Results
Six themes were identified: uncertainty in decision making (inadequacy of scientific evidence, relying on experiential knowledge, pressure to optimize care); attunement to patient and family (sensitivity to multiple cues, prioritizing individual preferences, addressing psychosocial and physical interactions, opening “Pandora’s Box”); deciphering cause to guide intervention (disaggregating symptoms and interactions, flexibility in assessment, curtailing investigative intrusiveness); balancing complexities in medical management (trading off side effects, minimizing mismatched goals, urgency in resolving severe symptoms); fostering hope and empowerment (allaying fear of the unknown, encouraging meaning making, championing patient empowerment, truth telling); and depending on multidisciplinary expertise (maximizing knowledge exchange, sharing management responsibility, contending with hierarchical tensions, isolation and discontinuity of care).
Conclusion
Management of symptom clusters, as both an art and a science, is currently fraught with uncertainty in decision making. Strengthening multidisciplinary collaboration; continuity of care; more pragmatic planning of clinical trials to address more than one symptom; and training in symptom cluster management is required.
Key Words:
multiple symptoms, symptom clusters, advanced cancer, symptom management, health professionals, qualitative research
Research in the past three decades has seen a burgeoning interest in quality of life for cancer patients and survivors. Driven by patient-report and multidimensional in nature, health-related quality of life has emerged as an important outcome in cancer clinical trials and has thus informed treatment decision-making. The purpose of this chapter is to provide an overview of the various types and dimensions of HRQOL measurement and describe their relevance for use across the continuum of cancer care. In addition, several emerging issues and applications of HRQOL research are described. Future work can benefit from sophisticated measurement approaches that maximize the precision, flexibility, and brevity of HRQOL measurement while providing meaningful information to patients and providers that can inform treatment-related decisions and be linked to clinical benchmarks.
Pain occurs in the majority of patients with advanced cancer and is associated with multiple other symptoms, which in combination are manifested with increasing frequency toward the last days of life. Although the pursuit of World Health Organization (WHO) guidelines can achieve adequate pain relief for 80%-90% of patients with cancer, there is evidence to suggest that this is not achieved in clinical practice. Although there are many potential explanations, the failure to conduct a multidimensional assessment likely plays a significant role in this undertreatment. A multidimensional approach incorporates the assessment of pain in the context of other variables, including other symptoms, therapeutic interventions, and the domains of physical, psychosocial, and spiritual functioning. This approach contrasts with the unidimensional approach, which attributes all aspects of the pain experience (including use of analgesics and psychological distress) to the patient's reported pain intensity. More than 30 years ago, Melzack and Casey conceptualized pain as being composed of three major dimensions: sensory-discriminative, motivational-affective, and cognitive-evaluative. However, there are relatively few literature references to the multidimensional nature of cancer pain before the publication of a study by Ahles et al. in 1983. This study demonstrated that pain occurring in association with cancer consisted of the following general components: sensory (including characteristics such as site, radiation, intensity, and quality); affective (including mood disturbance and anxiety); cognitive (including the influence of pain on thought processes, and the meaning of pain); and behavioral (including use of analgesic medication, and relationship of pain to activities of daily living).
This book is the first comprehensive report and analysis of the Dutch euthanasia experience over the last three decades. In contrast to most books about euthanasia, which are written by authors from countries where the practice is illegal and therefore practised only secretly, this book analyzes empirical data and real-life clinical behavior. Its essays were written by the leading Dutch scholars and clinicians who shaped euthanasia policy and who have studied, evaluated and helped regulate it. Some of them have themselves practised euthanasia. The book will contribute to the world literature on physician-assisted death by providing a comprehensive examination of how euthanasia has been practised and how it has evolved in one specific national and cultural context. It will greatly advance the understanding of euthanasia among both advocates and opponents of the practice.
To identify patients having fatigue, it is necessary to assess the patients fatigue systematically. This study investigates three different approaches to the assessment of needs concerning fatigue in patients with advanced cancer and addresses the following questions.
In a cross-sectional nationwide survey, patients were asked about their needs concerning fatigue in three different ways: Fatigue intensity was measured with the European Organisation for Research and Treatment of Cancer quality of life questionnaire, fatigue burden (the extent fatigue was a problem) and fatigue felt need (whether the patient experienced an unmet need regarding their fatigue) was measured with the Three-Levels-of-Needs Questionnaire. The relations between these three approaches were investigated using cross-tabulations, polychromic correlations, receiver operating curves, and area under the curve.
In total, 1447 patients participated (61 %). Of these, 34 % reported at least quite a bit fatigue (intensity), 36 % reported at least quite a bit fatigue burden, and 35 % reported experiencing an unmet need. There was a high correlation between fatigue intensity and fatigue burden (0.91). Fatigue intensity was also correlated with experiencing an unmet need and having at least a little fatigue predicted experiencing an unmet need.
Overall, no matter which approach was used, about a third of the patients had a need concerning fatigue. In nearly all cases, patients who had fatigue also experienced fatigue to be a problem. The QLQ-C30 item 'Were you tired' worked as a screening tool to identify patients experiencing an unmet need concerning fatigue.
In this paper, we present a Near Field Communication (NFC)-based electronic data capture prototype for patient self-reported rating scales. Such scales are valuable feedback for medical treatment and care processes. As traditional paper-based questionnaires are time- and cost-consuming and may be affected by low patient compliance, our prototype allows patient monitoring and electronic data acquisition directly from the patient’s home. It enables real time representation and analysis of patient data and thus allows direct medical intervention by physicians. In developing the prototype, we followed a design science approach, developed design goals for the special case of patients suffering from impaired motor skills, and tested the prototype in a field study over the course of twelve weeks. We chose NFC since the interaction paradigm is intuitive and quickly learned, without prior knowledge being necessary. Our results indicate that NFC is almost as simple as filling out a paper-based questionnaire. During the study patients used the prototype autonomously and with minimal errors. Further, NFC technology was perceived as very intuitive and the information quality of each patient’s health status could be improved. Based on the findings we derive recommendations for future research and applications of NFC based electronic data capture systems.
Symptoms by definition are subjective, and patients' role in their assessment and management will impact on patient outcomes; thus, symptom management is an area of acute care practice where facilitation of patient participation is vital if quality outcomes are to be achieved.
This study originated from a large multimethod research program exploring patient participation in symptom management in an acute oncology setting. The purpose of this article is to explore patients' perceptions of the barriers and facilitators to participating in their symptom management during an episode of admission to an acute oncology ward and the relationships between these perceptions and patients' preference for participation.
One hundred seventy-one cancer inpatients consented and completed an interview-administered questionnaire. Patients' preference for participation was measured using the Control Preference Scale. Responses to open-ended survey questions were evaluated using content analysis.
Ten categories were identified in the analyses of patient perceptions of the barriers and facilitators to participating in care decisions relating to their symptoms. Patients, irrespective of their Control Preference, reported multiple barriers and facilitators to participating in their symptom management.
Patients overall perceived information as the most critical component of participation. Irrespective of patients' preference for participation, there were similarities in the barriers and facilitators to the operationalization of participation in the acute care setting reported.
Understanding patient perceptions of barriers and facilitators of participating in symptom management has provided important insights into person and system factors in the acute care sector impacting quality patient symptom outcomes.
Breathlessness is a common and distressing symptom in patients with advanced disease. Patients' self-report is deemed to be the most valid method of symptom assessment. When patients are not capable of self-assessment, professionals' assessment is often used as alternative but evidence on the validity is conflicting. The aim of this study was to compare self- and professionals' assessment of breathlessness regarding presence and severity in patients with advanced disease.
Secondary analysis of a cross-sectional, multi-centre and nationwide register (HOspice and Palliative Care Evaluation (HOPE)). Documented inpatients from hospices and palliative care units from 2006 to 2008 who completed the self-assessed MInimal DOcumentation System (MIDOS) were included. Professionals' assessment were based on the integrated symptom and problem checklist (symptom scores, 0-3). Cohen's kappa (κ) was used to estimate the 'level of agreement' (LoA).
Two thousand six hundred twenty-three patients (mean age, 66.9 (SD, 12.8); 54.4 % female; median Eastern Cooperative Oncology Group score, 3; 95.9 % with malignant disease) were analysed. Prevalence of breathlessness was 53.4 % (1,398 patients) by professionals' and 53.1 % (1,410 patients) by self-assessment. Presence was correctly evaluated by professionals in 80.9 % of cases (sensitivity, 81.8 %; specificity, 79.8 %). Severity of breathlessness was correctly estimated in 65.7 % of cases. LoA was good (κ = 0.62) for the evaluation of presence of breathlessness and moderate (κ = 0.5) for the estimation of severity. The proportion of over- or underestimated scores was similar.
If patient's self-rating, the gold standard of symptom assessment, is not possible, professionals' assessment might be a valid alternative, at least for assessing the presence of breathlessness.
The extent to which a doctor or health professional can make a valid assessment of a patient's quality of life, anxiety and depression was investigated in a series of cancer patients. Doctors and patients filled out the same forms, viz. the Karnofsky, Spitzer, Linear Analogue Self Assessment Scales and a series of simple scales designed for this study, at the same time. Correlations between the two sets of scores were poor, suggesting that the doctors could not accurately determine what the patients felt. A further study examining the reproducibility of these scales demonstrated considerable variability in results between different doctors. It is concluded that if a reliable and consistent method of measuring quality of life in cancer patients is required, it must come from the patients themselves and not from their doctors and nurses.
An audit was carried out of 51 oncology patients referred to a clinical psychology service to identify the characteristics of patients selected for referral and to assess change following psychological intervention. A survey was conducted of an unselected sample of oncology patients representative of the workload of the oncology department from which the referrals came, to determine the prevalence of comparable psychosocial problems among patients who were not referred for help and to assess whether doctors were aware of the problems patients reported. Data were collected using the Hospital Anxiety and Depression (HAD) and Mental Adjustment to Cancer (MAC) scales and a problem checklist devised for this study. Referred patients were significantly more anxious and depressed (P < 0.001) and showed poorer adjustment on MAC scales than the surveyed sample, but 30% of the latter group warranted assessment for anxiety and 23% for depression. The number of psychosocial problems of their severity. Intervention was clinically significant mood disorder irrespective of the specific problems of their severity. Intervention was associated with a significant improvement in distress and problems for referred patients by the time of discharge. Psychosocial problems were often undetected by staff even in referred patients. The checklist is a feasible screening method for potentially remediable problems which are cumulatively a significant contributor to cancer patients' distress.
In 1986, the European Organization for Research and Treatment of Cancer (EORTC) initiated a research program to develop an integrated, modular approach for evaluating the quality of life of patients participating in international clinical trials.
We report here the results of an international field study of the practicality, reliability, and validity of the EORTC QLQ-C30, the current core questionnaire. The QLQ-C30 incorporates nine multi-item scales: five functional scales (physical, role, cognitive, emotional, and social); three symptom scales (fatigue, pain, and nausea and vomiting); and a global health and quality-of-life scale. Several single-item symptom measures are also included.
The questionnaire was administered before treatment and once during treatment to 305 patients with nonresectable lung cancer from centers in 13 countries. Clinical variables assessed included disease stage, weight loss, performance status, and treatment toxicity.
The average time required to complete the questionnaire was approximately 11 minutes, and most patients required no assistance. The data supported the hypothesized scale structure of the questionnaire with the exception of role functioning (work and household activities), which was also the only multi-item scale that failed to meet the minimal standards for reliability (Cronbach's alpha coefficient > or = .70) either before or during treatment. Validity was shown by three findings. First, while all interscale correlations were statistically significant, the correlation was moderate, indicating that the scales were assessing distinct components of the quality-of-life construct. Second, most of the functional and symptom measures discriminated clearly between patients differing in clinical status as defined by the Eastern Cooperative Oncology Group performance status scale, weight loss, and treatment toxicity. Third, there were statistically significant changes, in the expected direction, in physical and role functioning, global quality of life, fatigue, and nausea and vomiting, for patients whose performance status had improved or worsened during treatment. The reliability and validity of the questionnaire were highly consistent across the three language-cultural groups studied: patients from English-speaking countries, Northern Europe, and Southern Europe.
These results support the EORTC QLQ-C30 as a reliable and valid measure of the quality of life of cancer patients in multicultural clinical research settings. Work is ongoing to examine the performance of the questionnaire among more heterogenous patient samples and in phase II and phase III clinical trials.
We describe a simple method for the assessment of symptoms twice a day in patients admitted to a palliative care unit. Eight visual analog scales (VAS) 0–100 mm are completed either by the patient alone, by the patient with nurse's assistance, or by the nurses or relatives at 10:00 and 18:00 hours, in order to indicate the levels of pain, activity, nausea, depression, anxiety, drowsiness, appetite, and sensation of well-being. The information is then transferred to a graph that contains the assessments of up to 21 days on each page. The sum of the scores for all symptoms is defined as the symptom distress score. The Edmonton Symptom Assessment System (ESAS) was carried out for 101 consecutive patients for the length of their admission to our unit. Of these, 84% were able to make their own assessment sometime during their admission. However, before death 83% of assessments were completed by a nurse or relative. Mean symptom distress score was 410±95 during day 1 of the admission, versus 362±83 during day 5 (p<0.01). Mean symptom distress scores throughout the hospitalization were 359±105, 374±93, 359±91 and 406±81 when the ESAS was completed by the patient alone, patient with nurse's assistance (p=N.S.), nurse alone (p=N.S.), or relative (p<0.01) respectively. We conclude that this is a simple and useful method for the regular assessment of symptom distress in the palliative care setting.
ABSTRACT– A self-assessment scale has been developed and found to be a reliable instrument for detecting states of depression and anxiety in the setting of an hospital medical outpatient clinic. The anxiety and depressive subscales are also valid measures of severity of the emotional disorder. It is suggested that the introduction of the scales into general hospital practice would facilitate the large task of detection and management of emotional disorder in patients under investigation and treatment in medical and surgical departments.
I argue that clinical medicine can best be understood not as a purified science but as a hermeneutical enterprise: that is, as involved with the interpretation of texts. The literary critic reading a novel, the judge asked to apply a law, must arrive at a coherent reading of their respective texts. Similarly, the physician interprets the text of the ill person: clinical signs and symptoms are read to ferret out their meaning, the underlying disease. However, I suggest that the hermeneutics of medicine is rendered uniquely complex by its wide variety of textual forms. I discuss four in turn: the experiential text of illness as lived out by the patient; the narrative text constituted during history-taking; the physical text of the patient's body as objectively examined; the instrumental text constructed by diagnostic technologies. I further suggest that certain flaws in modern medicine arise from its refusal of a hermeneutic self-understanding. In seeking to escape all interpretive subjectivity, medicine has threatened to expunge its primary subject — the living, experiencing patient.
The use of proxy raters of patients' quality of life has been suggested as a means of facilitating the factoring of quality-of-life considerations explicitly into the medical decision-making process and of resolving the problem of missing data in longitudinal quality-of-life investigations. This review addresses two questions related to the potential role of such proxy raters in clinical research and practice: (1) to what extent are health care providers and lay individuals involved in the care of patients ("significant others") able to assess accurately the quality of life of patients with chronic disease? and (2) under what conditions, if any, is inclusion of such proxy ratings in quality-of-life investigations warranted? Although the extant literature yields few unequivocal findings, a number of clear trends can be identified: (i) health care providers and significant others tend, in general, to underestimate patients' quality of life; (ii) health care providers and significant others appear to evaluate patients' quality of life with a comparable degree of (in)accuracy; (iii) health care providers tend to underrate the pain intensity of their patients; (iv) proxy ratings appear to be more accurate when the information sought is concrete and observable; and (v) while significant others' ratings tend to be more accurate when they live in close proximity to the patient, they can also be biased by the caregiving function of the rater. There is need for more methodologically sound studies that: (a) incorporate head-to-head comparisons of health care providers and significant others as proxy raters; (b) employ well-validated quality-of-life measures; and (3) employ a longitudinal design in order to examine the effect of changes in patients' health status over time on the ability of proxies to provide valid quality-of-life assessments.
We describe a simple method for the assessment of symptoms twice a day in patients admitted to a palliative care unit. Eight visual analog scales (VAS) 0-100 mm are completed either by the patient alone, by the patient with nurse's assistance, or by the nurses or relatives at 10:00 and 18:00 hours, in order to indicate the levels of pain, activity, nausea, depression, anxiety, drowsiness, appetite, and sensation of well-being. The information is then transferred to a graph that contains the assessments of up to 21 days on each page. The sum of the scores for all symptoms is defined as the symptom distress score. The Edmonton Symptom Assessment System (ESAS) was carried out for 101 consecutive patients for the length of their admission to our unit. Of these, 84% were able to make their own assessment sometime during their admission. However, before death 83% of assessments were completed by a nurse or relative. Mean symptom distress score was 410 +/- 95 during day 1 of the admission, versus 362 +/- 83 during day 5 (p less than 0.01). Mean symptom distress scores throughout the hospitalization were 359 +/- 105, 374 +/- 93, 359 +/- 91 and 406 +/- 81 when the ESAS was completed by the patient alone, patient with nurse's assistance (p = N.S.), nurse alone (p = N.S.), or relative (p less than 0.01) respectively. We conclude that this is a simple and useful method for the regular assessment of symptom distress in the palliative care setting.
I argue that clinical medicine can best be understood not as a purified science but as a hermeneutical enterprise: that is, as involved with the interpretation of texts. The literary critic reading a novel, the judge asked to apply a law, must arrive at a coherent reading of their respective texts. Similarly, the physician interprets the 'text' of the ill person: clinical signs and symptoms are read to ferret out their meaning, the underlying disease. However, I suggest that the hermeneutics of medicine is rendered uniquely complex by its wide variety of textual forms. I discuss four in turn: the "experiential text" of illness as lived out by the patient; the "narrative text" constituted during history-taking; the "physical text" of the patient's body as objectively examined; the "instrumental text" constructed by diagnostic technologies. I further suggest that certain flaws in modern medicine arise from its refusal of a hermeneutic self-understanding. In seeking to escape all interpretive subjectivity, medicine has threatened to expunge its primary subject--the living, experiencing patient.
A self-assessment scale has been developed and found to be a reliable instrument for detecting states of depression and anxiety in the setting of an hospital medical outpatient clinic. The anxiety and depressive subscales are also valid measures of severity of the emotional disorder. It is suggested that the introduction of the scales into general hospital practice would facilitate the large task of detection and management of emotional disorder in patients under investigation and treatment in medical and surgical departments.
A multicenter study involving six palliative care units in Italy was carried out on 159 terminal cancer patients seen at home or in hospital. The physician or the nurse completed independently from the patient the Therapy Impact Questionnaire (TIQ), a questionnaire devised for quality-of-life evaluation in terminal cancer patients. The patient's assessment was used as the valid reference measurement to compare with the health-care workers' evaluation to assess the validity of the latter. The results showed that percentages of agreement were higher for physical than for psychological and cognitive symptoms, and that there was a greater agreement on the absence rather than on the presence of a problem. None of the characteristics of the patient nor of the proxy showed any statistically significant relationship with the two disagreement indexes. The results suggest that caution is needed in the use of health-care workers as alternative sources of information regarding patients' quality of life.
One hundred patients admitted to an acute hospice/palliative care unit in a U.S. teaching hospital were evaluated using a standardized data acquisition tool that assessed the presence of physical symptoms and attitudes concerning admission to such a specialty unit. Patients entering the unit between June 1995 and October 1995 completed the tool within 24 hours of admission. Symptoms reported were fatigue in 81 patients, anorexia in 70, dyspnea in 61, xerostomia in 58, cough in 52, pain in 49, confusion in 37, depression in 37, constipation in 35, nausea in 30, insomnia in 23, and vomiting in 22. Of the 59 patients and family/friends that responded to the question "How do you feel about hospice care?", 53 gave a positive response. When asked about the best aspects of the unit, the most common response related to the care the patient and family received (23 responses, 39%). We conclude that patients admitted to an acute inpatient hospice/palliative care unit have multiple symptoms and a high degree of satisfaction with the environment.
Considerable research has focused on pain and other symptoms in terminal cancer patients referred to hospices and palliative care services. These patients differ from Dutch cancer patients in the palliative stage of their disease because the latter are cared for by general practitioners at home and medical specialists in outpatient departments. To clarify the experience of these Dutch patients, a study was started to investigate the prevalence and severity of pain and other symptoms as well as the functional status of consecutive patients visiting oncology outpatient departments for follow-up. After randomization, one group (I) of patients was interviewed at home by a general practitioner using structured questionnaires. The other group (II) received the questionnaires by mail, and scored the symptoms independently. The results of the symptom assessment show that patients in groups I and II suffered 2.4 (SD = 1.7) and 2.8 (SD = 2.0) symptoms, respectively. Between 30% and 40% of all patients reported constipation, nausea, loss of appetite, coughing, and dyspnea. These percentages were 50% lower when only moderate, severe, or extremely distressing symptoms were included. Sixty percent of all patients had pain, and 20% indicated a daytime pain score of 5 or greater on a scale of 0 to 10. Functional status was measured by the COOPWONCA charts; the mean score for the charts "physical fitness" and "daily activities" was 1.5 points lower for cancer patients than a random sample from the community of the same age and gender. The findings of this study should motivate doctors to put more energy in symptom assessment and interventions in palliative care.
Quality of life (QL) assessments are increasingly being included in clinical trials, but their use in clinical practice is still uncommon. The objectives of this study were to investigate the feasibility of introducing individual QL assessments into the daily routine of an out-patient oncology clinic, and the potential impact of such assessments on doctor-patient communication. The study sample included six physicians and 18 of their patients from the out-patient clinic of the Netherlands Cancer Institute/Antoni van Leeuwenhoek Hospital in Amsterdam, The Netherlands. For each patient, three follow-up consultations were observed. The first visit was employed for the purpose of a baseline measurement. At the two subsequent visits, the patients were asked to complete the EORTC QLQ-C30, a standardised cancer-specific QL questionnaire. The patients' responses were computer-scored and transformed into a graphic summary. The summary included current scores as well as those elicited at the previous visit. Both the physicians and the patients received a copy of the summary just prior to the medical consultation. Completing, scoring and printing the QL data could be done during waiting room time. The availability of the summary did not lengthen the average consultation time. A small increase was noted in the average number of QL issues discussed per consultation. However, the most notable trend was the increased responsibility taken by the physicians in raising specific QL issues for discussion. When the QL summary was available, the physicians raised three times as many topics than was the case prior to its use (P < 0.05). All six physicians and the majority of patients believed that the QL summary facilitated communication, and expressed interest in continued use of the procedure. The introduction of individual QL assessments in routine out-patient oncology practice is feasible and appears to stimulate physicians to inquire into specific aspects of the health and well-being of their patients. However, given the methodological limitations of this pilot study, the results should be interpreted with caution.
The aim of this study was to investigate the extent to which the symptoms experienced by advanced cancer patients were covered by the medical records. Fifty-eight patients participated in the study. On the day of first encounter with our palliative care department, a medical history was taken, and on this or the following day, the patients completed the EORTC Quality of Life Questionnaire (EORTC QLQ-C30), Edmonton Symptom Assessment System (ESAS), and Hospital Anxiety and Depression Scale (HADS). The symptomatology reported in the patient-completed questionnaires was compared with the symptomatology mentioned by the physician in the medical record. The analysis revealed good concordance concerning pain, but most other symptoms or problems were reported much more often by patients than by their doctors. Reasons for these discrepancies are discussed. It is suggested that the doctor's knowledge of the patient's symptomatology might gain from more systematic screening and transfer of information from patient self-assessment questionnaires to the medical records.
on behalf of the EORTC Quality of Life Study Group. The EORTC QLQ-C30 Scoring Manual Brussels: Euro-pean Organization for Research and Treatment of Cancer
- Fayers P N K Aaronson
- D Curran
- M Groenvold
Fayers P, Aaronson N, Bjordal K, Curran D, Groenvold M. on behalf of the EORTC Quality of Life Study Group. The EORTC QLQ-C30 Scoring Manual (2 nd edn). Brussels: Euro-pean Organization for Research and Treatment of Cancer, 1999.
Symptoms and functional status of patients with disseminated cancer visiting outpatient departments Address: Annette S. Strömgren, MD, PhD Department of Palliative Medicine Bispebjerg Hospital DK-2400 Copenhagen NV Denmark e-mail: as06/bbh
- Kw Schuit
- Dt Sleijfer
- Wj Meijer
- R Otter
- J Schakenraad
Schuit KW, Sleijfer DT, Meijer WJ, Otter R, Schakenraad J, van den Bergh FCM et al. Symptoms and functional status of patients with disseminated cancer visiting outpatient departments. J Pain Symptom Manage 1998: 16: 290–297. Address: Annette S. Strömgren, MD, PhD Department of Palliative Medicine Bispebjerg Hospital DK-2400 Copenhagen NV Denmark e-mail: as06/bbh.hosp.dk
PhD Department of Palliative Medicine Bispebjerg Hospital DK-2400 Copenhagen NV Denmark e-mail: as06/bbh
- Annette S Strömgren
- Md
Annette S. Strömgren, MD, PhD
Department of Palliative Medicine
Bispebjerg Hospital
DK-2400 Copenhagen NV
Denmark
e-mail: as06/bbh.hosp.dk
Quality-of life evaluation: When do terminal cancer patients and health-care providers agree?
- C Brunelli
- M Costatini
- P Di-Guilo
- M Galluci
- F Fusco
- G Miccinesi
Brunelli C, Costatini M, Di-Guilo P, Galluci M, Fusco F, Miccinesi G et al. Quality-of life evaluation: When do terminal
cancer patients and health-care providers agree? J Pain
Symptom Manage 1998: 15: 151-158.
Symptoms and functional status of patients with disseminated cancer visiting outpatient departments
- K W Schuit
- D T Sleijfer
- W J Meijer
- R Otter
- J Schakenraad
- Fcm Van Den Bergh
Schuit KW, Sleijfer DT, Meijer WJ, Otter R, Schakenraad J,
van den Bergh FCM et al. Symptoms and functional status
of patients with disseminated cancer visiting outpatient departments. J Pain Symptom Manage 1998: 16: 290-297.
Quality-of life evaluation: When do terminal cancer patients and health-care providers agree?
- Brunelli