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Patient and carer preference for, and satisfaction with, specialist models of palliative care: a systematic literature review |
Wilkinson E K, Salisbury C, Bosanquet N, Franks P J, Kite S, Lorentzon M, Naysmith A |
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Authors' objectives To examine the impact of specialist models of palliative care on consumer satisfaction, opinion and preference.
Searching Electronic searches of the following databases were carried out (1978-June 1998): MEDLINE; EMBASE; Index of scientific and technical proceedings; the Cochrane Library; SIGLE (Index of grey literature); NHS Project Research System. Details of the search strategies were provided. The following journals were handsearched (June 1992-June 1996): the Hospice Journal; Palliative Medicine; Journal of Palliative Care; Cancer Nursing; Oncology Nursing Forum. In addition the European Directory of Palliative Care Research and the manual index of Palliative Medicine were searched and the following funding bodies contacted for further information: NHS Project Register; Cancer Research Council; Imperial Cancer Research Fund; Medical Research Council; Wellcome Trust. The bibliographies of the retrieved articles were checked for additional references and various organisations and individuals in the field were asked to check the final bibliography and supply any additional information.
Study selection Study designs of evaluations included in the reviewAll study designs including randomised controlled trials (RCTs), cohort studies, retrospective and prospective surveys. Only studies conducted in Europe, North America, Australasia, or Israel that were published in English, German, French, Italian or Swedish were included. The following were excluded from the review: personal commentaries, general or public opinion, ethical, legal or religious issues, education, history of palliative care provision, individual case histories, the development of research instruments or general cancer care services.
Specific interventions included in the reviewDifferent models of palliative care including inpatient hospice care, specialist community services, home care, inpatient hospital care, and non-specialist care in the community.
Participants included in the reviewPatients and carers of patients requiring palliative care services, regardless of disease type. The term 'carer' was defined as including all informal caregivers such as friends, relatives, spouses, family members or neighbours who cared for patients. The majority of the studies focused on cancer patients.
Outcomes assessed in the reviewThe main outcomes were patient/carer satisfaction, preference or opinion. Other outcomes included quality of life, costs, psychological status, morbidity, and service utilisation. 'Satisfaction' was not defined a priori and all studies using the term were included in the analysis.
How were decisions on the relevance of primary studies made?The titles and abstracts of articles were examined by at least two researchers, who then categorised the studies into the particular areas of interest.
Assessment of study quality Study validity was assessed using different checklists for different study designs. The checklists considered study design, potential biases, the extent to which results were attributable to the intervention and the reliability of the results. The authors do not state how the papers were assessed for validity, or how many of the authors performed the validity assessment.
Data extraction Data were extracted using standardised data extraction tables, which recorded the following information: bibliographic details; country of publication; study population; study setting; disease type; study design, intervention, outcome measures, number of participants; number of conditions; duration of intervention; measurement tools; results; conclusions and comments on strengths and weaknesses.
Methods of synthesis How were the studies combined?A narrative summary looking first at methodological issues and then results of the effectiveness data in various settings (inpatient hospice care in the UK; specialist community services; home care; inpatient hospital care and non-specialist care in the community; hospice care in North America; and home care in North America). More weight was given in the discussion to larger, better quality studies.
How were differences between studies investigated?The authors do not state how differences between the studies were investigated.
Results of the review Seventy-nine studies were included. Data from 22 key studies (2 RCTs; 2 cohort studies; 2 observational studies; 7 prospective interview surveys; and 9 retrospective interview surveys) were recorded in tables and discussed in greater detail.
Methodological issues: The term 'satisfaction' was rarely defined a priori and therefore the outcomes may well differ between studies. A large number of the studies were retrospective studies of bereaved relatives/friends and it has been shown that these may be subject to bias as a result of the process of grief. A number of other factors including the use of proxy responses and the possible pressure felt by respondents to give socially desirable answers, were suggested as possible biases in the studies. Differences in instrument design, general focus and patient characteristics made meaningful comparisons between studies difficult.
Inpatient hospice care in the UK: Overall, comparative studies of inpatient care in hospital vs hospice indicated that consumers favour hospice care. However, the studies were relatively small scale and mainly focused on one hospice (St. Christopher's Hospice). In terms of satisfaction comparative studies also found higher levels of satisfaction with hospice vs conventional care. Again, however, the studies were methodologically flawed and so these findings are dubious. These studies did however suggest that consumers appreciate non-clinical aspects of hospice care such as humaneness, ability of staff to reduce anxiety, honest communication and supportive nursing care.
Specialist community services: One study compared hospice home care with other non-specialised services. However, no firm conclusions could be drawn from this study. A number of other small studies examined consumers' views on home hospice care, showing that perceived benefits of home care include 24hr professional care and attention to symptoms. A small number of comparative studies also showed that specialist outreach care compared favourable with other community care services.
Home care: There is a growing body of evidence to suggest that home is the preferred site of death, however interview surveys suggest that this wish is not always fulfilled.
Inpatient hospital care and non-specialist care in the community: A recent RCT found no effect of co-ordinating care for terminally ill cancer patients on satisfaction levels. Overall, the research suggests that consumer criticisms of hospital-based palliative care are not only numerous but also wide-ranging. Recent research also criticises non-specialised palliative care in the community although the criticisms are not as wide-ranging as those for hospital care. Hospice care in North America: Overall, comparative examinations of consumer satisfaction with inpatient hospice care vs more conventional forms of care show inconsistent results. The variation in focus and methodological flaws in these studies make it difficult to draw any firm conclusions. Retrospective studies from one hospice suggested equally high levels of satisfaction report by informal carers when comparing hospice vs two types of hospital care. Smaller scale observational studies suggest that perceived benefits of hospice care include: relaxed visiting hours, home-like atmosphere, attention given to families and good nursing care.
Home care in North America: Comparative studies (RCTs) of multi-disciplinary vs ordinary home care showed contradictory results in terms of satisfaction. Overall, the research showed that satisfaction with home services both specialised and non-specialised is generally high. Specific criticisms were however reported and included: lay carer concerns over inadequate sleep while caring for patient, carer difficulties with accessing a respite service, carer concerns over pain control, and negative impact of lack of respite care and distressing symptoms on family. Other research also indicated that carers were not fully aware of all of the services on offer.
Authors' conclusions In conclusion, there are few consistent trends in consumer opinion on and satisfaction with specialist models of palliative care. This may be a reflection of the methodological problems of collecting this type of information within a palliative care environment.
CRD commentary This review uses clearly reported methodology and is based on a thorough search of the literature. Extensive efforts were made to locate both published and unpublished work thereby minimising the possibility of publication bias. The inclusion/exclusion criteria used to define the study population, design and intervention type were very wide and this contributed to the observed heterogeneity between studies. Study validity was assessed and considering the lack of homogeneity, the studies were appropriately combined in a narrative review. Although the authors state that 79 studies met their inclusion criteria only 22 of the studies were reported in detail. The authors acknowledged a number of potential methodological flaws within the studies and also highlighted the problems encountered when synthesising overall conclusions based on evidence from retrospective studies. One major problem was the lack of a well-defined outcome measure when looking at patient/carer satisfaction. In view of these issues the findings of the review should be interpreted with caution and the authors are justified in their recommendations for future research.
Implications of the review for practice and research Practice: The authors did not state any implications for practice.
Research: The authors stated that 'further research is needed into consumer priorities for patients dying of non-cancer diseases, and into the possible impact of patients characteristics on consumer satisfaction, opinion and preference for specialist models of palliative care'. Also 'future research could also address how to improve non-clinical aspects of hospital clinical care' and 'also assess the impact of self-help groups and volunteers on consumer opinion and satisfaction with palliative care'.
Bibliographic details Wilkinson E K, Salisbury C, Bosanquet N, Franks P J, Kite S, Lorentzon M, Naysmith A. Patient and carer preference for, and satisfaction with, specialist models of palliative care: a systematic literature review. Palliative Medicine 1999; 13(3): 197-216 Indexing Status Subject indexing assigned by NLM MeSH Caregivers; Community Health Services; Consumer Behavior; England; Hospice Care; Hospitals; Humans; Palliative Care /organization & Patient Satisfaction; Terminal Care; United States; administration /standards AccessionNumber 11999001262 Date bibliographic record published 31/08/2000 Date abstract record published 31/08/2000 Record Status This is a critical abstract of a systematic review that meets the criteria for inclusion on DARE. Each critical abstract contains a brief summary of the review methods, results and conclusions followed by a detailed critical assessment on the reliability of the review and the conclusions drawn. |
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