‘Best practice’ in developing and evaluating palliative and end-of-life care services: A meta-synthesis of research methods for the MORECare project

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).

Keywords

Palliative care terminal care review evaluation studies research design

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References

Gomes

Higginson

. Where people die (1974–2030): past trends, future projections and implications for care. Palliat Med 2008; 22: 33–41.

Mathers

Loncar

. Projections of global mortality and burden of disease from 2002 to 2030. PLoS Med 2006; 3: e442.

McNamara

Rosenwax

Holman

. A method for defining and estimating the palliative care population. J Pain Symptom Manage 2006; 32: 5–12.

Department of Health. End of life care strategy – promoting high quality care for adults at the end of life. London: Department of Health, 2008.

Council of Europe. Recommendation Rec (2003) 24 of the Committee of Ministers to member states on the organisation of palliative care. Strasbourg: Council of Europe, 2003.

Lorenz

Lynn

. Evidence for improving palliative care at the end of life: a systematic review. Ann Intern Med 2008; 148: 147–159.

Sleeman

Gomes

Higginson

. Research into end-of-life cancer care – investment is needed. Lancet 2012; 379: 519.

UK Clinical Research Collaborative. UK health research analysis. London: UK Clinical Research Collaborative, 2006.

Kaasa

Hjermstad

Loge

. Methodological and structural challenges in palliative care research: how have we fared in the last decades? Palliat Med 2006; 20: 727–734.

10.

Public Health. Eurostat online database. Brussels: Eurostat, 2010.

11.

Lunney

Lynn

Foley

. Patterns of functional decline at the end of life. JAMA 2003; 289: 2387–2392.

12.

World Health Organization. National cancer control programmes: policies and managerial guidelines. 2nd ed. Geneva: World Health Organization, 2002.

13.

Shipman

Gysels

White

. Improving generalist end of life care: national consultation with practitioners, commissioners, academics, and service user groups. BMJ 2008; 337: a1720.

14.

Walshe

Caress

Chew-Graham

. Implementation and impact of the Gold Standards Framework in community palliative care: a qualitative study of three primary care trusts. Palliat Med 2008; 22: 736–743.

15.

Rinck

Kleijnen

Van den Bos

. Trials in palliative care. BMJ 1995; 310: 598–599.

16.

Grande

Todd

. Why are trials in palliative care so difficult? Palliat Med 2000; 14: 69–74.

17.

McWhinney

Bass

Donner

. Evaluation of a palliative care service: problems and pitfalls. BMJ 1994; 309: 1340–1342.

18.

Higginson

. It would be NICE to have more evidence? Palliat Med 2004; 18: 85–86.

19.

Davidson

Murtagh

Higginson

. Methodological considerations for end-of-life research in patients with chronic kidney disease. J Nephrol 2008; 21: 268–282.

20.

Bennett

Davies

Higginson

. Delivering research in end-of-life care: problems, pitfalls and future priorities. Palliat Med 2010; 24: 456–461.

21.

El-Jawahri

Greer

Temel

. Does palliative care improve outcomes for patients with incurable illness? A review of the evidence. J Support Oncol 2011; 9: 87–94.

22.

Mularski

Shugarman

. A systematic review of measures of end-of-life care and its outcomes. Health Serv Res 2007; 42: 1848–1870.

23.

Mularski

Rosenfeld

Joel Coons

. Measuring outcomes in randomized prospective trials in palliative care. J Pain Symptom Manage 2007; 34: S7–S19.

24.

Hearn

Higginson

. Outcome measures in palliative care for advanced cancer patients: a review. J Public Health Med 1997; 19: 193–199.

25.

McCrone

. Capturing the costs of end-of-life care: comparisons of multiple sclerosis, Parkinson’s disease, and dementia. J Pain Symptom Manage 2009; 38: 62–67.

26.

Normand

. Measuring outcomes in palliative care: limitations of QALYs and the road to PalYs. J Pain Symptom Manage 2009; 38: 27–31.

27.

Campbell

Murray

Darbyshire

. Designing and evaluating complex interventions to improve health care. BMJ 2007; 334: 455–459.

28.

Campbell

Fitzpatrick

Haines

. Framework for design and evaluation of complex interventions to improve health. BMJ 2000; 321: 694–696.

29.

Craig

Dieppe

Macintyre

. Developing and evaluating complex interventions: the new Medical Research Council guidance. BMJ 2008; 337: a1655.

30.

Eldridge

Spencer

Cryer

. Why modelling a complex intervention is an important precursor to trial design: lessons from studying an intervention to reduce falls-related injuries in older people. J Health Serv Res Policy 2005; 10: 133–142.

31.

Public Health Resource Unit. Critical Appraisal Skills Programme (CASP): making sense of evidence. London: Public Health Resource Unit (Solutions for Public Health, NHS), 2006.

32.

Farquhar

Higginson

Fagan

. Results of a pilot investigation into a complex intervention for breathlessness in advanced chronic obstructive pulmonary disease (COPD): brief report. Palliat Support Care 2010; 8: 143–149.

33.

Hall

Goddard

Opio

. Feasibility, acceptability and potential effectiveness of Dignity Therapy for older people in care homes: a phase II randomized controlled trial of a brief palliative care psychotherapy. Palliat Med 2011.

34.

MRC. Developing and evaluating complex interventions: new guidance. London: Medical Research Council, 2008.

35.

MRC. A framework for the development and evaluation of RCTs for complex interventions to improve health. London: Medical Research Council, 2000.

36.

Moher

Liberati

Tetzlaff

. Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. PLoS Med 2009; 6: e1000097.

37.

Harding

Karus

Easterbrook

. Does palliative care improve outcomes for patients with HIV/AIDS? A systematic review of the evidence. Sex Transm Infect 2005; 81: 5–14.

38.

EPOC. Cochrane Effective Practice and Organisation of Care Review Group. Data collection checklist. Ottawa, ON, Canada: Cochrane Effective Practice and Organisation of Care, 2002.

39.

Rinck

Van den Bos

Kleijnen

. Methodologic issues in effectiveness research on palliative cancer care: a systematic review. J Clin Oncol 1997; 15: 1697–1707.

40.

Pope

Mays

Popay

. Synthesizing qualitative and quantitative health evidence: a guide to methods. Maidenhead; New York: Open University Press, McGraw Hill Education,2007.

41.

Arai

Britten

Popay

. Testing methodological developments in the conduct of narrative synthesis: a demonstration review of research on the implementation of smoke alarm interventions. Evid Policy 2007; 3: 361–383.

42.

Brown

Lilford

. Evaluating service delivery interventions to enhance patient safety. BMJ 2008; 337: a2764.

43.

Garcia-Perez

Linertova

Martin-Olivera

. A systematic review of specialised palliative care for terminal patients: which model is better? Palliat Med 2009; 23: 17–22.

44.

Higginson

Finlay

Goodwin

. Is there evidence that palliative care teams alter end-of-life experiences of patients and their caregivers? J Pain Symptom Manage 2003; 25: 150–168.

45.

Higginson

Finlay

Goodwin

. Do hospital-based palliative teams improve care for patients or families at the end of life? J Pain Symptom Manage 2002; 23: 96–106.

46.

Finlay

Higginson

Goodwin

. Palliative care in hospital, hospice, at home: results from a systematic review. Ann Oncol 2002; 13(Suppl. 4): 257–264.

47.

Zimmermann

Riechelmann

Krzyzanowska

. Effectiveness of specialized palliative care: a systematic review. JAMA 2008; 299: 1698–1709.

48.

Critchley

Jadad

Taniguchi

. Are some palliative care delivery systems more effective and efficient than others? A systematic review of comparative studies. J Palliat Care 1999; 15: 40–47.

49.

Thomas

Wilson

Sheps

. A literature review of randomized controlled trials of the organization of care at the end of life. Can J Aging 2006; 25: 271–293.

50.

Goodwin

Higginson

Edwards

. An evaluation of systematic reviews of palliative care services. J Palliat Care 2002; 18: 77–83.

51.

Salisbury

Bosanquet

Wilkinson

. The impact of different models of specialist palliative care on patients’ quality of life: a systematic literature review. Palliat Med 1999; 13: 3–17.

52.

Wilkinson

Salisbury

Bosanquet

. Patient and carer preference for, and satisfaction with, specialist models of palliative care: a systematic literature review. Palliat Med 1999; 13: 197–216.

53.

Hall

Kolliakou

Petkova

. Interventions for improving palliative care for older people living in nursing care homes. Cochrane Database Syst Rev 2011; 3: CD007132. DOI: 10.1002/14651858.CD007132.pub2.

54.

Davies

Higginson

. Systematic review of specialist palliative day-care for adults with cancer. Support Care Cancer 2005; 13: 607–627.

55.

Smeenk

Van Haastregt

De Witte

. Effectiveness of home care programmes for patients with incurable cancer on their quality of life and time spent in hospital: systematic review. BMJ 1998; 316: 1939–1944.

56.

Gysels

Higginson

. Improving supportive and palliative care for adults with cancer: research evidence. London: NICE, 2004.

57.

Higginson

Evans

. What is the evidence that palliative care teams improve outcomes for cancer patients and their families? Cancer J 2010; 16: 423–435.

58.

Sampson

Ritchie

Lai

. A systematic review of the scientific evidence for the efficacy of a palliative care approach in advanced dementia. Int Psychogeriatr 2005; 17: 31–40.

59.

Windham

Bennett

Gottlieb

. Care management interventions for older patients with congestive heart failure. Am J Manag Care 2003; 9: 447–459.

60.

Taylor

Candy

Bryar

. Effectiveness of innovations in nurse led chronic disease management for patients with chronic obstructive pulmonary disease: systematic review of evidence. BMJ 2005; 331: 485.

61.

McAlister

Stewart

Ferrua

. Multidisciplinary strategies for the management of heart failure patients at high risk for admission: a systematic review of randomized trials. J Am Coll Cardiol 2004; 44: 810–819.

62.

Phillips

Wright

Kern

. Comprehensive discharge planning with postdischarge support for older patients with congestive heart failure: a meta-analysis. JAMA 2004; 291: 1358–1367.

63.

Ram

Wedzicha

Wright

. Hospital at home for patients with acute exacerbations of chronic obstructive pulmonary disease: systematic review of evidence. BMJ 2004; 329: 315.

64.

Sorensen

Pinquart

Duberstein

. How effective are interventions with caregivers? An updated meta-analysis. Gerontologist 2002; 42: 356–372.

65.

Acton

Kang

. Interventions to reduce the burden of caregiving for an adult with dementia: a meta-analysis. Res Nurs Health 2001; 24: 349–360.

66.

Yin

Zhou

Bashford

. Burden on family members: caring for frail elderly: a meta-analysis of interventions. Nurs Res 2002; 51: 199–208.

67.

Acton

Winter

. Interventions for family members caring for an elder with dementia. Annu Rev Nurs Res 2002; 20: 149–179.

68.

Emanuel

. Cost savings at the end of life. What do the data show? JAMA 1996; 275: 1907–1914.

69.

Hatziandreu

Archontakis

Daly

. The potential cost savings of greater use of home- and hospice based end of life care in England. London: National Audit Office, 2008.

70.

Lavis

Davies

Oxman

. Towards systematic reviews that inform health care management and policy-making. J Health Serv Res Policy 2005; 10(Suppl. 1): 35–48.

71.

Harding

Higginson

. What is the best way to help caregivers in cancer and palliative care? A systematic literature review of interventions and their effectiveness. Palliat Med 2003; 17: 63–74.

72.

Ahronheim

Morrison

Morris

. Palliative care in advanced dementia: a randomized controlled trial and descriptive analysis. J Palliat Med 2000; 3: 265–273.

73.

Thomas

Wilson

. Randomized controlled trials of non-medical and non-surgical therapies for palliative care: a literature review. Altern Med Rev 2005; 10: 204–215.

74.

Abernethy

Currow

Hunt

. A pragmatic 2 x 2 x 2 factorial cluster randomized controlled trial of educational outreach visiting and case conferencing in palliative care-methodology of the Palliative Care Trial (ISRCTN 81117481). Contemp Clin Trials 2006; 27: 83–100.

75.

Grimshaw

Ward

Eccles

. Getting research into practice: Oxford handbook of public health practice. Oxford: Oxford University Press, 2001.

76.

Eccles

Armstrong

Baker

. An implementation research agenda. Implement Sci 2009; 4: 18.

77.

Booth

Farquhar

Gysels

. The impact of a breathlessness intervention service (BIS) on the lives of patients with intractable dyspnea: a qualitative phase 1 study. Palliat Support Care 2006; 4: 287–293.

78.

Gysels

Shipman

Higginson

. ‘I will do it if it will help others:’ motivations among patients taking part in qualitative studies in palliative care. J Pain Symptom Manage 2008; 35: 347–355.

79.

White

Hardy

Gilshenan

. Randomised controlled trials of palliative care – a survey of the views of advanced cancer patients and their relatives. Eur J Cancer 2008; 44:1820–1828.

80.

Gysels

Evans

Higginson

. Patient, caregiver, health professional and researcher views and experiences of participating in research at the end of life: a critical interpretive synthesis of the literature. BMC Med Res Methodol 2012; 12: 123.

81.

Dobratz

. Issues and dilemmas in conducting research with vulnerable home hospice participants. J Nurs Scholarsh 2003; 35: 371–376.

82.

Hall

Chochinov

Harding

. A Phase II randomised controlled trial assessing the feasibility, acceptability and potential effectiveness of dignity therapy for older people in care homes: study protocol. BMC Geriatr 2009; 9: 9.

83.

Goodman

Froggatt

Mathie

. NIHR School for Social Care Research methods review 12: end of life care. London: NIHR SSCR, London School of Economics and Political Science, 2012.

84.

Department of Health. Research for Patient Benefit Working Party. London: Department of Health, 2004.

85.

Eccles

Grimshaw

Campbell

. Research designs for studies evaluating the effectiveness of change and improvement strategies. Qual Saf Health Care 2003; 12: 47–52.

86.

Murray

Kendall

Boyd

. Illness trajectories and palliative care. BMJ 2005; 330: 1007–1011.

87.

Higginson

McCrone

Hart

. Is short-term palliative care cost-effective in multiple sclerosis? A randomized phase II trial. J Pain Symptom Manage 2009; 38: 816–826.

88.

Temel

Greer

Muzikansky

. Early palliative care for patients with metastatic non – small-cell lung cancer. N Engl J Med 2010; 363: 733–742.

89.

Black

. Why we need observational studies to evaluate the effectiveness of health care. BMJ 1996; 312: 1215–1218.

90.

Stroup

Berlin

Morton

. Meta-analysis of observational studies in epidemiology: a proposal for reporting. JAMA 2000; 283: 2008–2012.

91.

McKee

Britton

Black

. Methods in health services research. Interpreting the evidence: choosing between randomised and non-randomised studies. BMJ 1999; 319: 312–315.

92.

Petticrew

Cummins

Ferrell

. Natural experiments: an underused tool for public health? Public Health 2005; 119: 751–757.

93.

Addington-Hall

. Introduction. In: Addington-Hall

Bruera

Higginson

. (eds) Research methods in palliative care. Oxford: Oxford University Press, 2007, pp. 1–9.

94.

Bradley

Wiles

Kinmonth

. Development and evaluation of complex interventions in health services research: case study of the Southampton heart integrated care project (SHIP). The SHIP Collaborative Group. BMJ 1999; 318: 711–715.

95.

Farquhar

Ewing

Booth

. Using mixed methods to develop and evaluate complex interventions in palliative care research. Palliat Med 2011; 25: 748–757.

96.

Flemming

Adamson

Atkin

. Improving the effectiveness of interventions in palliative care: the potential role of qualitative research in enhancing evidence from randomized controlled trials. Palliat Med 2008; 22: 123–131.

97.

Harding

Higginson

. Palliative care in sub-Saharan Africa. Lancet 2005; 365: 1971–1977.