Evaluation of a palliative care service: problems and pitfalls

McWhinney, Ian R.; Bass, Martin J.; Donner, Allan

doi:10.1136/bmj.309.6965.1340

Cited by 220 publications

(211 citation statements)

References 11 publications

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“…The factors which may have contributed include the selection of an unrepresentative sample of patients; contamination of the control group; and insufficient numbers of patients. In the planning of this study we had anticipated all of these potential difficulties of conducting an RCT which have been highlighted by others (Kane et al, 1985;Mcwhinney et al, 1994;Aranda, 2000) and had taken steps to overcome them (the unequal randomisation ratio, broad entry criteria, and maintenance of a high level of awareness of the study amongst all hospital staff over a 2-year period). In spite of this only 38% of potential patient recruits were randomised.…”

Section: Discussionmentioning

confidence: 99%

The imPaCT study: a randomised controlled trial to evaluate a hospital palliative care team

et al. 2002

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A randomised controlled trial was undertaken to assess the effectiveness of a hospital Palliative Care Team (PCT) on physical symptoms and health-related quality of life (HRQoL); patient, family carer and primary care professional reported satisfaction with care; and health service resource use. The full package of advice and support provided by a multidisciplinary specialist PCT ('full-PCT') was compared with limited telephone advice ('telephone-PCT', the control group) in the setting of a teaching hospital trust in the SW of England. The trial recruited 261 out of 684 new inpatient referrals; 175 were allocated to 'full-PCT', 86 to 'telephone-PCT' (2 : 1 randomisation); with 191 (73%) being assessed at 1 week. There were highly significant improvements in symptoms, HRQoL, mood and 'emotional bother' in 'full-PCT' at 1 week, maintained over the 4-week follow-up. A smaller effect was seen in 'telephone-PCT'; there were no significant differences between the groups. Satisfaction with care in both groups was high and there was no significant difference between them. These data reflect a high standard of care of patients dying of cancer and other chronic diseases in an acute hospital environment, but do not demonstrate a difference between the two models of service delivery of specialist palliative care.

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Section: Discussionmentioning

confidence: 99%

The imPaCT study: a randomised controlled trial to evaluate a hospital palliative care team

et al. 2002

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“…The complexity and challenges of conducting palliative care research are well recognized. 47,48 Although we began with 89 caregivers at the outset of the palliative period, only 36 had patients who entered the terminal period, either because the patient died before we were able to document (KPS score ≤ 50) or because the patient's functional status remained high (KPS score > 50) throughout the study. This might have limited our power to detect real but small changes over time.…”

Section: Discussionmentioning

confidence: 99%

Family caregiver burden: results of a longitudinal study of breast cancer patients and their principal caregivers

Grunfeld¹

2004

Canadian Medical Association Journal

797

673

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Background: The vital role played by family caregivers in supporting dying cancer patients is well recognized, but the burden and economic impact on caregivers is poorly understood. We prospectively examined the psychosocial, occupational and economic impact of caring for a person with a terminal illness. Methods: We studied 89 caregivers of women with advanced breast cancer receiving care at either the Ottawa or Hamilton regional cancer centres in Ontario. Patients were followed until their death or study completion at 3 years. Patients identified a principal caregiver to participate in the study. The Karnofsky Performance Status (KPS) index, the Medical Outcomes Study 36-item Short Form (SF-36), the Hospital Anxiety and Depression Scale, the Zarit Burden Inventory, FAMCARE and the Medical Outcomes Study Social Support Survey were administered during follow-up. Economic data were collected by means of a questionnaire administered by an interviewer. Assessments were conducted every 3 months during the palliative period (KPS score > 50) and every 2 weeks during the terminal period (KPS score ≤ 50). Results: Over half of the caregivers were male (55%) and the patient's spouse or partner (52%), with a mean age of 53 years. At the start of the palliative period, the caregivers' mean physical functioning score was better than the patients' (51.3 v. 35.1, 95% confidence interval [CI] 13.3-20.0); there were similar mean mental functioning scores (46.6 and 47.1 respectively); similar proportions were depressed (11% and 12%); and significantly more caregivers than patients were anxious (35% v. 19%, p = 0.009). More caregivers were depressed (30% v. 9%, p = 0.02) and had a higher level of perceived burden (26.2 v. 19.4, p = 0.02) at the start of the terminal period than at the start of the palliative period. Burden was the most important predictor of both anxiety and depression. Of employed caregivers, 69% reported some form of adverse impact on work. In the terminal period 77% reported missing work because of caregiving responsibilities. Prescription drugs were the most important component of financial burden. Interpretation: Caregivers' depression and perceived burden increase as patients' functional status declines. Strategies are needed to help reduce the psychosocial, occupational and economic burden associated with caregiving.

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“…42 A further limitation in evaluating palliative care is the set of methodological challenges. These include small sample sizes and attrition, 38 selection bias recruitment and gate-keeping particularly among those with advanced disease, 43 aggregation of data from heterogeneous populations, the selection of appropriate outcomes in the measurement of broad psychosocial as well as clinical outcomes, 44 and the resulting lack of successful RCTs. 45 In the absence of successful RCTs in areas where compassionate but effective care is needed, overreliance on RCTs may not provide the evidence required.…”

Section: Discussionmentioning

confidence: 99%

Does palliative care improve outcomes for patients with HIV/AIDS? A systematic review of the evidence

Harding

Karus

Easterbrook

et al. 2005

Sexually Transmitted Infections

122

105

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Background:The need for palliative care in HIV management is underlined by the high prevalence of pain and symptoms, the toxicity, side effects, and virological failure associated with antiretroviral therapy, emergence of co-morbidities, continued high incidence of malignancies, late presentation of people with HIV disease, and the comparatively higher death rates among the infected individuals. Methods: A systematic review was undertaken to appraise the effect of models of palliative care on patient outcomes. A detailed search strategy was devised and biomedical databases searched using specific terms relevant to models of palliative care. Data from papers that met the inclusion criteria were extracted into common tables, and evidence independently graded using well described hierarchy of evidence. Results: 34 services met the inclusion criteria. Of these, 22 had been evaluated, and the evidence was graded as follows: grade 1 (n = 1); grade 2 (n = 2); grade 3 (n = 7); grade 4 (n = 1); qualitative (n = 6). Services were grouped as: home based care (n = 15); home palliative care/hospice at home (n = 7); hospice inpatient (n = 4); hospital inpatient palliative care (n = 4); specialist AIDS inpatient unit (n = 2); and hospital inpatient and outpatient care (n = 2). The evidence largely demonstrated that home palliative care and inpatient hospice care significantly improved patient outcomes in the domains of pain and symptom control, anxiety, insight, and spiritual wellbeing. Conclusions: Although the appraisal of evidence found improvements across domains, the current body of evidence suffers from a lack of (quasi) experimental methods and standardised measures. The specialism of palliative care is responding to the clinical evidence that integration into earlier disease stages is necessary. Further studies are needed to both identify feasible methods and evaluate the apparent beneficial effect of palliative care on patient outcomes in the post-HAART era.

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Evaluation of a palliative care service: problems and pitfalls

Abstract: Objective-To evaluate a palliative care home support team based on an inpatient unit.

Cited by 220 publications

References 11 publications

The imPaCT study: a randomised controlled trial to evaluate a hospital palliative care team

The imPaCT study: a randomised controlled trial to evaluate a hospital palliative care team

Family caregiver burden: results of a longitudinal study of breast cancer patients and their principal caregivers

Does palliative care improve outcomes for patients with HIV/AIDS? A systematic review of the evidence

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