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Barbara A. Daveson,
Juan P. Alonso,
Natalia Calanzani,
Christina Ramsenthaler,
Marjolein Gysels,
Barbara Antunes,
Katrien Moens,
Esther I. Groeneveld,
Gwenda Albers,
Silvia Finetti,
Francesca Pettentati,
Claudia Bausewein, Irene J. Higginson,
Richard Harding,
Luc Deliens,
Franco Toscani,
Pedro L. Ferreira,
Lucas Ceulemans,
Barbara Gomes
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ABSTRACT: Background: Despite ageing populations and increasing cancer deaths, many European countries lack national policies regarding palliative and end-of-life care. The aim of our research was to determine public views regarding end-of-life care in the face of serious illness. Methods: Implementation of a pan-European population-based survey with adults in England, Belgium (Flanders), Germany, Italy, the Netherlands, Portugal and Spain. Three stages of analysis were completed on open-ended question data: (i) inductive analysis to determine a category-code framework; (ii) country-level manifest deductive content analysis; and (iii) thematic analysis to identify cross-country prominent themes. Results: Of the 9344 respondents, 1543 (17%) answered the open-ended question. Two prominent themes were revealed: (i) a need for improved quality of end-of-life and palliative care, and access to this care for patients and families and (ii) the recognition of the importance of death and dying, the cessation of treatments to extend life unnecessarily and the need for holistic care to include comfort and support. Conclusions: Within Europe, the public recognizes the importance of death and dying; they are concerned about the prioritization of quantity of life over quality of life; and they call for improved quality of end-of-life and palliative care for patients, especially for elderly patients, and families. To fulfil the urgent need for a policy response and to advance research and care, we suggest four solutions for European palliative and end-of-life care: institute government-led national strategies; protect regional research funding; consider within- and between-country variance; establish standards for training, education and service delivery.
The European Journal of Public Health 03/2013; · 2.73 Impact Factor
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ABSTRACT: Background:Despite the high prevalence and impact of episodic breathlessness, information about characteristics and patterns is scarce.Aim:To explore the experience of patients with advanced disease suffering from episodic breathlessness, in order to describe types and patterns.Design and participants:Qualitative design using in-depth interviews with patients suffering from advanced stages of chronic heart failure, chronic obstructive pulmonary disease, lung cancer or motor neurone disease. As part of the interviews, patients were asked to draw a graph to illustrate typical patterns of breathlessness episodes. Interviews were tape-recorded, transcribed verbatim and analysed using Framework Analysis. The graphs were grouped according to their patterns.Results:Fifty-one participants (15 chronic heart failure, 14 chronic obstructive pulmonary disease, 13 lung cancer and 9 motor neurone disease) were included (mean age 68.2 years, 30 of 51 men, mean Karnofsky 63.1, mean breathlessness intensity 3.2 of 10). Five different types of episodic breathlessness were described: triggered with normal level of breathlessness, triggered with predictable response (always related to trigger level, e.g. slight exertion causes severe breathlessness), triggered with unpredictable response (not related to trigger level), non-triggered attack-like (quick onset, often severe) and wave-like (triggered or non-triggered, gradual onset). Four patterns of episodic breathlessness could be identified based on the graphs with differences regarding onset and recovery of episodes. These did not correspond with the types of breathlessness described before.Conclusion:Patients with advanced disease experience clearly distinguishable types and patterns of episodic breathlessness. The understanding of these will help clinicians to tailor specific management strategies for patients who suffer from episodes of breathlessness.
Palliative Medicine 03/2013; · 2.38 Impact Factor
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Claudia Bausewein,
Natalia Calanzani,
Barbara A Daveson,
Steffen T Simon,
Pedro L Ferreira, Irene J Higginson,
Dorothee Bechinger-English,
Luc Deliens,
Marjolein Gysels,
Franco Toscani,
Lucas Ceulemans,
Richard Harding,
Barbara Gomes
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ABSTRACT: BACKGROUND: Europe faces an enormous public health challenge with aging populations and rising cancer incidence. Little is known about what concerns the public across European countries regarding cancer care towards the end of life. We aimed to compare the level of public concern with different symptoms and problems in advanced cancer across Europe and examine factors influencing this. METHODS: Telephone survey with 9,344 individuals aged >=16 in England, Flanders, Germany, Italy, Netherlands, Portugal and Spain. Participants were asked about nine symptoms and problems, imagining a situation of advanced cancer with less than one year to live. These were ranked and the three top concerns examined in detail. As 'burden to others' showed most variation within and between countries, we determined the relative influence of factors on this concern using GEE and logistic regression. RESULTS: Overall response rate was 21%. Pain was the top concern in all countries, from 34% participants (Italy) to 49% (Flanders). Burden was second in England, Germany, Italy, Portugal, and Spain. Breathlessness was second in Flanders and the Netherlands. Concern with burden was independently associated with age (70+ years, OR 1.50; 95%CI 1.24-1.82), living alone (OR 0.82, 95%CI 0.73-0.93) and preferring quality rather than quantity of life (OR 1.43, 95%CI 1.14-1.80). CONCLUSIONS: When imagining a last year of life with cancer, the public is not only concerned about medical problems but also about being a burden. Public education about palliative care and symptom control is needed. Cancer care should include a routine assessment and management of social concerns, particularly for older patients with poor prognosis.
BMC Cancer 03/2013; 13(1):105. · 3.01 Impact Factor
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ABSTRACT: Most patients with cancer prefer to die at home or in a hospice, but hospitals remain the most common place of death (PoD).This study aims to explore the changing time trends of PoD and the associated factors, which are essential for end-of-life care improvement.
The study analysed all cancer deaths in England collected by the Office for National Statistics during 1993-2010 (n = 2,281,223). Time trends of age- and gender-standardised proportion of deaths in individual PoDs were evaluated using weighted piecewise linear regression. Variables associated with PoD (home or hospice versus hospital) were determined using proportion ratio (PR) derived from the log-binomial regression, adjusting for clustering effects. Hospital remained the most common PoD throughout the study period (48.0%; 95% CI 47.9%-48.0%), followed by home (24.5%; 95% CI 24.4%-24.5%), and hospice (16.4%; 95% CI 16.3%-16.4%). Home and hospice deaths increased since 2005 (0.87%; 95% CI 0.74%-0.99%/year, 0.24%; 95% CI 0.17%-0.32%/year, respectively, p<0.001), while hospital deaths declined (-1.20%; 95% CI -1.41 to -0.99/year, p<0.001). Patients who died from haematological cancer (PRs 0.46-0.52), who were single, widowed, or divorced (PRs 0.75-0.88), and aged over 75 (PRs 0.81-0.84 for 75-84; 0.66-0.72 for 85+) were less likely to die in home or hospice (p<0.001; reference groups: colorectal cancer, married, age 25-54). There was little improvement in patients with lung cancer of dying in home or hospice (PRs 0.87-0.88). Marital status became the second most important factor associated with PoD, after cancer type. Patients from less deprived areas (higher quintile of the deprivation index) were more likely to die at home or in a hospice than those from more deprived areas (lower quintile of the deprivation index; PRs 1.02-1.12). The analysis is limited by a lack of data on individual patients' preferences for PoD or a clinical indication of the most appropriate PoD.
More efforts are needed to reduce hospital deaths. Health care facilities should be improved and enhanced to support the increased home and hospice deaths. People who are single, widowed, or divorced should be a focus for end-of-life care improvement, along with known at risk groups such as haematological cancer, lung cancer, older age, and deprivation. Please see later in the article for the Editors' Summary.
PLoS Medicine 03/2013; 10(3):e1001410. · 16.27 Impact Factor
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Barbara A Daveson,
Claudia Bausewein,
Fliss Em Murtagh,
Natalia Calanzani, Irene J Higginson,
Richard Harding,
Joachim Cohen,
Steffen T Simon,
Luc Deliens,
Dorothee Bechinger-English,
Sue Hall,
Jonathan Koffman,
Pedro Lopes Ferreira,
Franco Toscani,
Marjolein Gysels,
Lucas Ceulemans,
Dagny F Haugen,
Barbara Gomes
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ABSTRACT: Background:The Council of Europe has recommended that member states of European Union encourage their citizens to make decisions about their healthcare before they lose capacity to do so. However, it is unclear whether the public wants to make such decisions beforehand.Aim:To examine public preferences for self-involvement in end-of-life care decision-making and identify associated factors.Design:A population-based survey with 9344 adults in England, Belgium, Germany, Italy, the Netherlands, Portugal and Spain.Results:Across countries, 74% preferred self-involvement when capable; 44% preferred self-involvement when incapable through, for example, a living will. Four factors were associated with a preference for self-involvement across capacity and incapacity scenarios, respectively: higher educational attainment ((odds ratio = 1.93-2.77), (odds ratio = 1.33-1.80)); female gender ((odds ratio = 1.27, 95% confidence interval = 1.14-1.41), (odds ratio = 1.30, 95% confidence interval = 1.20-1.42)); younger-middle age ((30-59 years: odds ratio = 1.24-1.40), (50-59 years: odds ratio = 1.23, 95% confidence interval = 1.04-1.46)) and valuing quality over quantity of life or valuing both equally ((odds ratio = 1.49-1.58), (odds ratio = 1.35-1.53)). Those with increased financial hardship (odds ratio = 0.64-0.83) and a preference to die in hospital (not a palliative care unit) (odds ratio = 0.73, 95% confidence interval = 0.60-0.88), a nursing home or residential care (odds ratio = 0.73, 95% confidence interval = 0.54-0.99) were less likely to prefer self-involvement when capable. For the incapacity scenario, single people were more likely to prefer self-involvement (odds ratio = 1.34, 95% confidence interval = 1.18-1.53).Conclusions:Self-involvement in decision-making is important to the European public. However, a large proportion of the public prefer to not make decisions about their care in advance of incapacity. Financial hardship, educational attainment, age, and preferences regarding quality and quantity of life require further examination; these factors should be considered in relation to policy.
Palliative Medicine 02/2013; · 2.38 Impact Factor
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ABSTRACT: BACKGROUND: Home-based models of hospice and palliative care are promoted with the argument that most people prefer to die at home. We examined the heterogeneity in preferences for home death and explored, for the first time, changes of preference with illness progression. METHODS: We searched for studies on adult preferences for place of care at the end of life or place of death in MEDLINE (1966--2011), EMBASE (1980--2011), psycINFO (1967--2011), CINAHL (1982--2011), six palliative care journals (2006--11) and reference lists. Standard criteria were used to grade study quality and evidence strength. Scatter plots showed and percentage preferring home death amongst patients, lay caregivers and general public, by study quality, year, weighted by sample size. RESULTS: 210 studies reported preferences of just over 100,000 people from 34 countries, including 34,021 patients, 19,514 caregivers and 29,926 general public members. 68% of studies with quantitative data were of low quality; only 76 provided the question used to elicit preferences. There was moderate evidence that most people prefer a home death--this was found in 75% of studies, 9/14 of those of high quality. Amongst the latter and excluding outliers, home preference estimates ranged 31% to 87% for patients (9 studies), 25% to 64% for caregivers (5 studies), 49% to 70% for the public (4 studies). 20% of 1395 patients in 10 studies (2 of high quality) changed their preference, but statistical significance was untested. CONCLUSIONS: Controlling for methodological weaknesses, we found evidence that most people prefer to die at home. Around four fifths of patients did not change preference as their illness progressed. This supports focusing on home-based care for patients with advanced illness yet urges policy-makers to secure hospice and palliative care elsewhere for those who think differently or change their mind. Research must be clear on how preferences are elicited. There is an urgent need for studies examining change of preferences towards death.
BMC Palliative Care 02/2013; 12(1):7. · 1.12 Impact Factor
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ABSTRACT: Background:Improved and cost-effective palliative and end-of-life care is an international policy imperative. Developments are impeded by a weak and often inconsistent evidence base.Aim:To examine the main methodological challenges and limitations to developing and evaluating palliative and end-of-life care services and requirements to further this field of research.Design:A meta-synthesis to systematically appraise the evidence from systematic reviews on the research methods used in studies evaluating the effectiveness of palliative care services for patients with advanced illness and/or carers meeting inclusion and quality criteria. We extracted data from the reviews on the methodological issues reported on the included studies into Excel spreadsheets and generated textual descriptions coded and analysed in NVivo.Data sources:Six electronic databases, reference chaining and expert advice.Results:In total, 27 systematic reviews were included on the effectiveness of palliative care services for patients with cancer (n = 6), advanced illness (n = 10) or mixed populations (n = 11) across care settings. Main methodological challenges were implementation as a continuum, active precise recruitment, addressing randomisation and economic evaluation beyond cost savings.Conclusions:The complexity of delivering and evaluating palliative and end-of-life care services requires the accumulation of knowledge from multiple sources to understand the active components of an intervention to deliver patient benefit and examine the evaluation methods to detect change and reveal processes prior to a definitive trial. The implementation of evidence into practice should form a continuum throughout the evaluation stages to reveal understanding on the process of intervention delivery, the context and the intended outcome(s).
Palliative Medicine 01/2013; · 2.38 Impact Factor
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Victoria Simms,
Nancy Gikaara,
Grace Munene,
Mackuline Atieno,
Jeniffer Kataike,
Clare Nsubuga,
Geoffrey Banga,
Eve Namisango,
Suzanne Penfold,
Peter Fayers,
Richard A Powell, Irene J Higginson,
Richard Harding
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ABSTRACT: We aimed to determine for the first time the prevalence and severity of multidimensional problems in a population newly diagnosed with HIV at outpatient clinics in Africa.
Recently diagnosed patients (within previous 14 days) were consecutively recruited at 11 HIV clinics in Kenya and Uganda. Participants completed a validated questionnaire, the African Palliative Outcome Scale (POS), with three underpinning factors. Ordinal logistic regression was used to evaluate risk factors for prevalence and severity of physical, psychological, interpersonal and existential problems.
There were 438 participants (62% female, 30% with restricted physical function). The most prevalent problems were lack of help and advice (47% reported none in the previous 3 days) and difficulty sharing feelings. Patients with limited physical function reported more physical/psychological (OR = 3.22) and existential problems (OR = 1.54) but fewer interpersonal problems (OR = 0.50). All outcomes were independent of CD4 count or ART eligibility.
Patients at all disease stages report widespread and burdensome multidimensional problems at HIV diagnosis. Newly diagnosed patients should receive assessment and care for these problems. Effective management of problems at diagnosis may help to remove barriers to retention in care.
PLoS ONE 01/2013; 8(2):e57203. · 4.09 Impact Factor
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ABSTRACT: Patients with progressive diseases often experience muscle weakness, which impacts adversely on levels of independence and quality of life. In those who are unable or unwilling to undertake traditional forms of exercise, neuromuscular electrical stimulation (NMES) may provide an alternative method of enhancing leg muscle strength. Programmes appear to be well tolerated and have led to improvements in muscle function, exercise capacity and quality of life. However, estimates regarding the effectiveness of NMES from individual studies lack power and precision.
Primary objective: to evaluate the effectiveness of NMES for improving muscle strength in adults with advanced disease. Secondary objective: to examine the acceptability and safety of NMES, and changes in muscle function (strength or endurance), muscle mass, exercise capacity, breathlessness and health-related quality of life.
Studies were identified from searches of The Cochrane Library, MEDLINE, EMBASE, CINAHL and PsycINFO databases to July 2012, citation searches, conference proceedings and previous systematic reviews.
We included randomised controlled trials (RCTs) in adults with advanced chronic obstructive pulmonary disease (COPD), chronic heart failure, cancer or human immunodeficiency virus/acquired immunodeficency syndrome (HIV/AIDS) comparing a programme of NMES as a sole or adjunct intervention to no treatment, placebo NMES or an active control. We imposed no language restriction.
Two review authors independently extracted data on study design, participants, interventions and outcomes. We assessed risk of bias using the Cochrane Collaboration's tool. We calculated mean differences (MD) or standardised mean differences (SMD) between intervention and control groups for outcomes with sufficient data; for other outcomes we described findings from individual studies.
Eleven studies involving a total of 218 participants met the inclusion criteria across COPD, chronic heart failure and thoracic cancer. NMES significantly improved quadriceps strength by a SMD of 0.9 (95% confidence interval (CI) 0.33 to 1.46), equating to approximately 25 Newton metres (Nm) (95% CI 9 to 41). Mean differences across various walking tests, favouring NMES, were 40 m (95% CI -4 to 84) for the six-minute walk test, 69 m (95% CI 19 to 119) for the incremental shuttle walk test and 160 m (95% CI 34 to 287) for the endurance shuttle walk test. Limited evidence was available for the assessment of other secondary outcomes.
NMES appears an effective means of improving muscle weakness in adults with progressive diseases such as COPD, chronic heart failure and cancer. Further research is required to clarify its place in clinical practice, by determining the optimal parameters for a NMES programme, the patients most likely to benefit, and its impact on morbidity and service use.
Cochrane database of systematic reviews (Online) 01/2013; 1:CD009419. · 5.72 Impact Factor
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ABSTRACT: Background:Palliative care is rarely being offered to patients with Parkinson's disease.Aim:To assess symptom prevalence, severity and palliative care needs in advanced stages of Parkinsonism.Design:A cross-sectional survey using a palliative care assessment tool, the Palliative Outcome Scale was administered to patients.Setting/participants:Eight-two patients with a diagnosis of idiopathic Parkinson's disease, multiple systems atrophy or progressive supranuclear palsy were included in the study.Results:Their mean age and disease stages 3-5 Hoehn and Yahr were 67 years and 4.1, respectively. Patients reported a mean of 10.7 (standard deviation = 3.9) physical symptoms. Over 80% had pain, fatigue, day time somnolence and problems with mobility. Other symptoms in 50%-80% included constipation, loss of bladder control, swallowing difficulties, drooling, breathlessness and sleep problems. Symptoms rated as causing severe problems were pain, fatigue, constipation and drooling. Assessment of mood revealed 70% of the patients felt anxiety and 60% had felt depressed. Eight-five per cent felt their families were anxious or worried about them. Thirty-eight per cent would have liked more information and 42% had practical problems that still needed to be addressed. There was a positive correlation between number of symptoms and disease severity (r = 0.39, p = 0.01). The total mean Palliative Outcome Scale score was 13.6 (standard deviation = 6.1), suggesting moderate palliative care needs.Conclusion:This is the first study to describe the care needs of people with Parkinson's disease using the Palliative Outcome Scale tool. The burden of symptoms and concerns was high in advanced stages of disease. It might be appropriate that people severely affected by these conditions should be considered for referral to specialist palliative care services.
Palliative Medicine 12/2012; · 2.38 Impact Factor
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ABSTRACT: BACKGROUND: Patients with fibrotic interstitial lung disease have symptom control and quality of life (QoL) needs. This review aims to evaluate the evidence for the use of interventions in improving dyspnoea, other symptoms and QoL. METHODS: Eleven databases, relevant websites and key journals were hand-searched. Studies were assessed and data extracted independently by two researchers using standardised proformas. Meta-analyses were performed where possible with 95% CI. RESULTS: 34 papers with 19 interventions in 3635 patients were included. Meta-analyses showed no significant effect of interferon γ-1b or sildenafil on 6-minute walking distance (6MWD) or dyspnoea. Pulmonary rehabilitation and pirfenidone had a positive effect on 6MWD (mean difference (95% CI) 27.4 (4.1 to 50.7)) and 24.0 (4.3 to 43.7), respectively), and pulmonary rehabilitation had a mixed effect on dyspnoea. Both pulmonary rehabilitation and sildenafil showed a trend towards significance in improving QoL. There was weak evidence for the improvement of 6MWD using oxygen; dyspnoea using prednisolone, diamorphine, D-pencillamine and colchicine; cough using interferon α and thalidomide; anxiety using diamorphine; fatigue using pulmonary rehabilitation; and QoL using thalidomide and doxycycline. A wide range of outcome scales was used and there were no studies with economic evaluation. CONCLUSIONS: There is strong evidence for the use of pulmonary rehabilitation and pirfenidone to improve 6MWD and moderate evidence for the use of sildenafil and pulmonary rehabilitation to improve QoL. Future recommendations for research would include careful consideration of the dichotomy of radical and palliative treatments when deciding on how symptom and QoL outcome measures are used and data presented.
Thorax 12/2012; · 6.84 Impact Factor
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ABSTRACT: CONTEXT: Most patient-reported outcome measurement tools in multiple sclerosis (MS) are geared toward less severely affected patients. Palliative care outcome measures have not been validated in patients with MS. OBJECTIVES: To assess the psychometric properties of the Core-Palliative Care Outcome Scale (Core-POS) and POS-MS-Symptoms (POS-MS-S) in patients severely affected by MS. METHODS: Secondary analyses were conducted on data from a Phase II trial of palliative care in MS. Patients completed assessments using the following five scales: Core-POS, POS-MS-S, the Multiple Sclerosis Impact Scale, the United Kingdom Neurological Disability Scale, and the Expanded Disability Status Scale. Data quality, scaling assumptions, acceptability, internal consistency, and construct validity of Core-POS and POS-MS-S were determined using standard psychometric methods. RESULTS: The 46 participants had a mean (±SD) age of 52.8 (±10.6) years. The mean Expanded Disability Status Scale score was 7.9 ± 1.2. Missing data were low (0 and 0.2% for Core-POS and POS-MS-S, respectively), and floor and ceiling effects were absent. Internal consistency was good (Cronbach's alpha for Core-POS and POS-MS-S were 0.72 [95% CI 0.56-0.84] and 0.81 [95% CI 0.72-0.89], respectively). Construct validity was consistent with a priori hypotheses 17-20 times. CONCLUSION: Psychometric analyses confirm that Core-POS and POS-MS-S are acceptable, reliable, and valid in patients severely affected by MS.
Journal of pain and symptom management 11/2012; · 2.42 Impact Factor
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ABSTRACT: PURPOSETo determine time trends and characteristics associated with opioid analgesic prescribing to patients with cancer who are approaching the end of life. PATIENTS AND METHODS
This population-based cohort study used data on 29,825 patients diagnosed with five common cancers-lung (34.2%), colorectal (19.9%), female breast (21.6%), prostate (19.1%), and head and neck (5.2%)-in the United Kingdom General Practice Research Database (GPRD) who died between 2000 and 2008. Opioid prescription rates in the last 3 months of life were described. Characteristics associated with opioid prescribing were investigated by using generalized estimation equation models. RESULTS: morphine (33.4%; 95% CI, 32.8% to 33.9%), diamorphine (11.6%; 95% CI, 11.2% to 11.9%), and fentanyl family (10.2%; 95% CI, 9.8% to 10.5%). Over time, prescription rates increased for opioids predominant during specific time periods, especially oxycodone. Older patients (age > 60 years) had significantly lower chances of receiving opioids than their younger (age < 50 years) peers (prevalence ratio [PR] range, 0.14 to 0.78), even adjusted for comorbidity. Women were slightly more likely than men to receive any type of opioid (PR,1.07; 95% CI, 1.04 to 1.11). Morphine and diamorphine (PR range, 1.14 to 1.56) were more commonly prescribed for lung and colorectal cancers and fentanyl family for head and neck cancers (PR, 1.39; 95% CI, 1.19 to 1.62) compared with for prostate cancers. CONCLUSION
Morphine and diamorphine remain the stronghold for treating cancer pain in the United Kingdom. Opioid prescription rates are increasing over time. Prescription rates are lower for older people for all opioids, suggesting that this group needs attention.
Journal of Clinical Oncology 10/2012; · 18.37 Impact Factor
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ABSTRACT: Abstract Background: Opioids are the drugs of choice for management of breathlessness in advanced disease, but acute episodic breathlessness remains difficult to manage. New routes of opioid applications with quicker onset of action seem attractive for the management of episodic breathlessness. Objective: This study aimed to determine the acceptability and preference of different routes of opioid applications in patients suffering from breathlessness due to advanced disease. Design: The study consisted of structured face-to-face interviews with patients suffering from breathlessness due to lung cancer (LC), chronic obstructive pulmonary disease (COPD), chronic heart failure (CHF), and motor neurone disease (MND). Images and explanation were used to illustrate six application forms (oral, inhaled, sublingual, intranasal, buccal, transmucosal). Results: Participants numbered 119 (UK n=48, Germany n=71), 60% male, mean age 67.7 years (SD 9.9); 50% suffered from COPD. Inhaled was the most accepted (87%) and preferred (68%) route of application, followed by sublingual (45%/13%) and intranasal (42%/8%). The oral was least accepted (24%) and least preferred (9%) although nearly all participants had previous experiences with it (97%). Ratings were similar in both countries but different for preferences of sublingual (UK>Germany) and intranasal (Germany>UK). In general, participants from the UK rated more often "yes" for acceptability of all routes compared to Germany. Conclusion: Inhaled was the most accepted and preferred route of application, but no route seemed to be acceptable to all patients. Therefore, individual patient preferences should be explored before drug prescription to enhance compliance and convenience.
Journal of palliative medicine 10/2012; · 1.84 Impact Factor
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ABSTRACT: PURPOSE OF REVIEW: Palliative care has become part of mainstream medicine with increasing evidence about the effectiveness of specialist palliative care (SPC) on patient and family outcomes. Comparison of studies testing SPC interventions is challenging as types of interventions and reporting of components of the intervention vary. In consequence, study results are difficult to interpret. RECENT FINDINGS: There is a continuous lack of clarity in palliative care definitions. For clinical trials, multidisciplinary care, supportive care documentation, symptom assessment and symptom management are suggested as key domains. In recent studies testing palliative care as an intervention SPC physicians and palliative care nurses were core members of multiprofessional teams, but integration of other team members varied. Management of symptoms and psychosocial issues were central to SPC with various other areas described. Services were delivered by hospital and community support teams, in palliative care units, outpatient clinics and hospital. Cost information was only provided by a few studies. SUMMARY: Due to the lack of an agreed definition of palliative care and heterogeneity in reporting of components of an SPC intervention comparison of studies remains challenging. Key aspects of palliative care interventions are incurable disease, multidisciplinary approach, focus on symptom management including standardized assessment, psychosocial and family support, and (advance) care planning. Detailed information about all aspects of the intervention should be provided.
Current opinion in supportive and palliative care 10/2012;
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ABSTRACT: RATIONALE: Health status is impaired in patients with sarcoidosis. There is a paucity of tools that assess health status in sarcoidosis. The objective of this study was to develop and validate the King's Sarcoidosis Questionnaire (KSQ), a new modular health status measure. METHODS: Patients with sarcoidosis were recruited from outpatient clinics. The development of the questionnaire consisted of three phases: item generation; item reduction, Rasch analysis to create unidimensional scales and validation; repeatability testing. RESULTS: 207 patients with sarcoidosis (organ involvement: 184 lung, 54 skin, 45 eye disease) completed a 65-item preliminary questionnaire. 36 items were removed due to redundancy or poor fit to the Rasch model. The final version of the KSQ consisted of five modules (General health status, Lung, Skin, Eye, Medications). Internal consistency assessed with Cronbach's α coefficient was 0.70-0.93 for KSQ modules. Concurrent validity of the Lung module was high compared with St George's Respiratory Questionnaire (r=-0.83) and moderate when compared to forced vital capacity (r=0.49). Concurrent validity with skin-specific and eye-specific measures ranged from r=-0.4 to 0.8. The KSQ was repeatable over 2 weeks (n=39), intraclass correlation coefficients for modules were 0.90-0.96. CONCLUSIONS: The KSQ is a brief, valid, self-completed health status measure for sarcoidosis. It can be used in the clinic to assess sarcoidosis from the patients' perspective.
Thorax 10/2012; · 6.84 Impact Factor
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Richard Harding,
Lucy Selman,
Victoria M Simms,
Suzanne Penfold,
Godfrey Agupio,
Natalya Dinat,
Julia Downing,
Liz Gwyther,
Barbara Ikin,
Thandi Mashao,
Keletso Mmoledi,
Lydia Mpanga Sebuyira,
Tony Moll,
Faith Mwangi-Powell,
Eve Namisango,
Richard A Powell,
Frank H Walkey, Irene J Higginson,
Richard J Siegert
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ABSTRACT: CONTEXT: The incidence of life-limiting progressive disease in sub-Saharan Africa presents a significant clinical and public health challenge. The ability to easily measure patient outcomes is essential to improving care. OBJECTIVES: The present study aims to determine the specific factors (if any) that underpin the African Palliative Care Association African Palliative Outcome Scale to assist the analysis of data in routine clinical care and audit. METHODS: Using self-reported data collected from patients with HIV infection in the eastern and southern Africa, an exploratory factor analysis was undertaken with 1337 patients; subsequently, a confirmatory analysis was done on two samples from separate data sets (n=445). RESULTS: Using exploratory factor analysis initially, both two- and three-factor solutions were examined and found to meet the criteria for simple structure and be readily interpretable. Then using confirmatory factor analysis on two separate samples, the three-factor solution demonstrated better fit, with Goodness-of-Fit Index values greater than 0.95 and Normative Fit Index values close to 0.90. The resulting three factors were 1) physical and psychological well being, 2) interpersonal well being, and 3) existential well being. CONCLUSION: This analysis presents an important new opportunity in the analysis of outcome data for patients with progressive disease. It has advantages over both the total scoring of multidimensional scaling (which masks differences between domains) and of the item scoring (which requires repeated analyses). The three factors map well onto the underlying concept and clinical goals of palliative care, and will enable audit of facility care.
Journal of pain and symptom management 09/2012; · 2.42 Impact Factor
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ABSTRACT: CONTEXT: Unlike pain, where the concept of breakthrough and background pain has been widely characterized and defined, breathlessness as a symptom has not yet been fully explored and has been rarely categorized. OBJECTIVES: To explore patients' experiences and descriptions of breathlessness to categorize breathlessness. METHODS: Qualitative study using in-depth interviews with patients suffering from four life-limiting and advanced diseases (chronic heart failure, chronic obstructive pulmonary disease, lung cancer, and motor neuron disease). Interviews were tape-recorded, transcribed verbatim, and analyzed using Framework analysis method. RESULTS: A total of 51 participants were interviewed (mean ± SD age 68.2 ± 11.6 years; 30 of 51 male; median Karnofsky 60%; mean ± SD breathlessness intensity 3.2 ± 1.7 of 10). Episodic breathlessness and continuous breathlessness were the main categories, with subcategories of triggered and non-triggered episodic breathlessness and continuous breathlessness for short and long periods. Episodic breathlessness triggered by exertion, non-triggered episodic breathlessness, and continuous breathlessness for a long period ("constant variable") were the most frequent and important categories with a high impact on daily living. Exertional breathlessness occurred in nearly all participants. Participants could differentiate episodic breathlessness (seconds, minutes, or hours) and continuous breathlessness (days, weeks, or months) by time. Episodic breathlessness occurred in isolation or in conjunction with continuous breathlessness. CONCLUSION: Participants categorize their breathlessness by time and triggers. The categorization needs further verification, similar to that already established in pain, and can be used as a new evidence-based categorization to advance our understanding of this under-researched, yet high impact, symptom to optimize management.
Journal of pain and symptom management 09/2012; · 2.42 Impact Factor
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ABSTRACT: INTRODUCTION: Treatment advances in multiple myeloma have increased expected survival from months to years for some patients. Alongside improved survival emerges a need to better understand and measure health related quality of life (HRQOL), both in research and clinical settings. OBJECTIVES: (1)Identify HRQOL tools validated for use in myeloma; (2)identify issues important to HRQOL from the point of view of myeloma patients; (3)describe the measurement properties of each HRQOL tool; (4)evaluate the content validity of HRQOL tools in terms of their ability to capture all issues important to patients and (5)explore the suitability of each HRQOL tool for use in different settings. METHOD: Systematic literature review of six databases with no limits by date or language. RESULTS: 39 studies reported validation of 13 HRQOL instruments. 7 studies identified issues important to HRQOL from the patients' perspective. No instrument was comprehensive to all issues important to patients. The EORTC-QLQ-C30 and MY24 have undergone the most comprehensive psychometric validation. Most validation occurred in trial patients and not clinically representative groups. No studies evaluated clinical utility of tools alongside routine practice. CONCLUSION: The best existing HRQOL tools are designed predominantly for use in research. Reliable, valid and responsive tools exist for this purpose, but may miss issues important to patients. The design of HRQOL measures should be guided by intended utility, whether for research or clinical practice, and further validation of HRQOL tools in clinically representative groups is needed. Development and validation of HRQOL tools for clinical use may be of value. © 2012 John Wiley & Sons A/S.
European Journal Of Haematology 09/2012; · 2.61 Impact Factor
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ABSTRACT: CONTEXT: Participants in a Phase II randomized controlled trial of Dignity Therapy felt that the intervention had helped them; however, the processes underlying this are not known. OBJECTIVES: To explore intervention and control participants' perceptions of the benefits of taking part in an evaluation of Dignity Therapy within the frame of the underlying model of the intervention. METHODS: We interviewed 29 patients at one week follow-up and 20 at four week follow-up. We also interviewed nine family members of patients in the intervention group. We used the Framework approach to qualitative analysis. This comprised five stages: familiarization, identifying a thematic framework, indexing, charting, and mapping and interpretation. The analysis was both deductive (a priori themes from the model informing the content and therapeutic tone of the intervention) and inductive (from participants' views). RESULTS: There was support for five of the seven themes from the model underlying Dignity Therapy: "generativity," "continuity of self," "maintenance of pride," "hopefulness," and "care tenor." With the exception of generativity, all were evident in both groups. Prevalent emergent themes for the intervention group were "reminiscence" and "pseudo life review." "Making a contribution" was prevalent in the control group. CONCLUSION: Patients with advanced cancer and their families found that Dignity Therapy had helped them in many ways; however, patients in the control group sometimes perceived similar benefits from taking part in the study, highlighting elements of Dignity Therapy that are common to dignity conserving care.
Journal of pain and symptom management 08/2012; · 2.42 Impact Factor
