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BMC Medicine
Published in: BMC Medicine 1/2016

Open Access 01-12-2016 | Research article

How effective are volunteers at supporting people in their last year of life? A pragmatic randomised wait-list trial in palliative care (ELSA)

Authors: Catherine Walshe, Steven Dodd, Matt Hill, Nick Ockenden, Sheila Payne, Nancy Preston, Guillermo Perez Algorta

Published in: BMC Medicine | Issue 1/2016

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Abstract

Background

Clinical care alone at the end of life is unlikely to meet all needs. Volunteers are a key resource, acceptable to patients, but there is no evidence on care outcomes. This study aimed to determine whether support from a social action volunteer service is better than usual care at improving quality of life for adults in the last year of life.

Methods

A pragmatic, multi-centre wait-list controlled trial, with participants randomly allocated to receive the volunteer support intervention either immediately or after a 4 week wait. Trained volunteers provided tailored face-to-face support including befriending, practical support and signposting to services, primarily provided within the home, typically for 2–3 hours per week. The primary outcome was rate of change of quality of life at 4 weeks (WHO QOL BREF, a general, culturally sensitive measure). Secondary outcomes included rate of change of quality of life at 8 weeks and Loneliness (De Jong Gierveld Loneliness Scale), social support (mMOS-SS), and reported use of health and social care services at 4 and 8 weeks.

Results

In total, 196 adults (61% (n = 109) female; mean age 72 years) were included in the study. No significant difference was found in main or secondary outcomes at 4 weeks. Rate of change of quality of life showed trends in favour of the intervention (physical quality of life domain: b = 3.98, CI, –0.38 to 8.34; psychological domain: b = 2.59, CI, –2.24 to 7.43; environmental domain: b = 3, CI, –4.13 to 4.91). Adjusted analyses to control for hours of volunteer input found significantly less decrease in physical quality of life in the intervention group (slope (b) 4.43, CI, 0.10 to 8.76). While the intervention also favoured the rate of change of emotional (b = –0.08; CI, –0.52 to 0.35) and social loneliness (b = –0.20; CI, –0.58 to 0.18), social support (b = 0.13; CI, –0.13 to 0.39), and reported use of health and social care professionals (b = 0.16; CI, –0.22 to 0.55), these were not statistically significant. No adverse events were reported.

Conclusions

Clinicians can confidently refer to volunteer services at the end of life. Future research should focus on ‘dose’ to maximise likely impact.

Trial registration

The trial was prospectively registered. ISRCTN Registry: ISRCTN12929812, registered 20 May 2015.
Literature
1.
2.
Dempers C, Gott M. Which public health approach to palliative care? An integrative literature review. Prog Palliat Care. 2016;2016:1–10.CrossRef
3.
Sallnow L, Richardson H, Murray SA, Kellehear A. The impact of a new public health approach to end-of-life care: A systematic review. Palliat Med. 2016;30(3):200–11.CrossRefPubMed
4.
Abel J, Walter T, Carey LB, Rosenberg J, Noonan K, Horsfall D, Leonard R, Rumbold B, Morris D. Circles of care: should community development redefine the practice of palliative care? BMJ Support Palliat Care. 2013;3(4):383–8.CrossRefPubMed
5.
Lewis J, DiGiacomo M, Currow D, Davidson P. Social capital in a lower socioeconomic palliative care population: a qualitative investigation of individual, community and civic networks and relations. BMC Palliat Care. 2014;13:30.CrossRefPubMedPubMedCentral
6.
Lewis JM, DiGiacomo M, Currow D, Davidson P. Dying in the margins: understanding palliative care and socioeconomic deprivation in the developed world. J Pain Symptom Manag. 2011;42(1):105–18.CrossRef
7.
Lewis JM, DiGiacomo M, Currow D, Davidson P. A social capital framework for palliative care: supporting health and well-being for people with life-limiting illness and their carers through social relations and networks. J Pain Symptom Manag. 2013;45(1):92–103.CrossRef
8.
Reeves D, Blickem C, Vassilev I, Brooks H, Kennedy A, Richardson G, Rogers A. The contribution of social networks to the health and self-management of patients with long-term conditions: a longitudinal study. PLoS ONE. 2014;9(6):e98340.CrossRefPubMedPubMedCentral
9.
10.
Claxton-Oldfield S, Gosselin N, Schmidt-Chamberlain K, Claxton-Oldfield J. A survey of family members’ satisfaction with the services provided by hospice palliative care volunteers. Am J Hosp Palliat Med. 2010;27(3):191–6.CrossRef
11.
Candy B, France R, Low J, Sampson L. Does involving volunteers in the provision of palliative care make a difference to patient and family wellbeing? A systematic review of quantitative and qualitative evidence. Int J Nurs Stud. 2015;52(3):756–68.CrossRefPubMed
12.
Cabinet Office. Community Life Survey: 2014–2015. Statistical Bulletin. London: Cabinet Office; 2015.
13.
Naylor C, Mundle C, Weaks L, Buck D. Volunteering in Health and Care: Securing a Sustainable Future. London: The King’s Fund; 2013.
14.
Scott R. Volunteering: vital to our future. How to make the most of volunteering in hospice and palliative care. London: Hospice UK; 2014.
15.
Department of Health. Our Commitment to You for End of Life Care. The Government Response to the Review of Choice in End of Life Care. London: DoH; 2016.
16.
Morris S, Wilmot A, Hill M, Ockenden N, Payne S. A narrative literature review of the contribution of volunteers in end-of-life care services. Palliat Med. 2013;27(5):428–36.CrossRefPubMed
17.
18.
Nissim R, Wong R, Fyles A, Moddel D, Zimmermann C, Rodin G. Can trained volunteers provide psychosocial support to patients undergoing radiotherapy? The perspective of patients and volunteers. Practical radiation oncology. 2012;2(4):e23-29.
19.
Pesut B, Hooper B, Lehbauer S, Dalhuisen M. Promoting volunteer capacity in hospice palliative care: a narrative review. Am J Hosp Palliat Care. 2014;31(1):69–78.CrossRefPubMed
20.
Wilson DM, Justice C, Thomas R, Sheps S, Macadam M, Brown M. End-of-life care volunteers: a systematic review of the literature. Health Serv Manag Res. 2005;18(4):244–57.CrossRef
21.
Walshe C, Algorta GP, Dodd S, Hill M, Ockenden N, Payne S, Preston N. Protocol for the End-of-Life Social Action Study (ELSA): a randomised wait-list controlled trial and embedded qualitative case study evaluation assessing the causal impact of social action befriending services on end of life experience. BMC Palliat Care. 2016;15:60.CrossRefPubMedPubMedCentral
22.
Zwarenstein M, Treweek S, Gagnier JJ, Altman DG, Tunis S, Haynes B, Oxman AD, Moher D. Improving the reporting of pragmatic trials: an extension of the CONSORT statement. BMJ. 2008;337:a2390.CrossRefPubMedPubMedCentral
23.
Farquhar M, Higginson IJ, Booth S. Fast-track trials in palliative care: an alternative randomized controlled trial design. J Palliat Med. 2009;12(3):213.CrossRefPubMed
24.
Higginson IJ, Booth S. The randomized fast-track trial in palliative care: Role, utility and ethics in the evaluation of interventions in palliative care? Palliat Med. 2011;25(8):741–7.CrossRefPubMed
25.
Bausewein C, Jolley C, Reilly C, Lobo P, Kelly J, Bellas H, Madan P, Panell C, Brink E, De Biase C, et al. Development, effectiveness and cost-effectiveness of a new out-patient Breathlessness Support Service: study protocol of a phase III fast-track randomised controlled trial. BMC Pulm Med. 2012;12:58.CrossRefPubMedPubMedCentral
26.
Farquhar MC, Prevost AT, McCrone P, Brafman-Price B, Bentley A, Higginson IJ, Todd C, Booth S. Is a specialist breathlessness service more effective and cost-effective for patients with advanced cancer and their carers than standard care? Findings of a mixed-method randomised controlled trial. BMC Med. 2014;12:194.CrossRefPubMedPubMedCentral
27.
Farquhar MC, Prevost AT, McCrone P, Brafman-Price B, Bentley A, Higginson IJ, Todd CJ, Booth S. The clinical and cost effectiveness of a Breathlessness Intervention Service for patients with advanced non-malignant disease and their informal carers: mixed findings of a mixed method randomised controlled trial. Trials. 2016;17:185.CrossRefPubMedPubMedCentral
28.
Skevington SM, Lotfy M, O'Connell KA. The World Health Organization's WHOQOL-BREF quality of life assessment: Psychometric properties and results of the international field trial. A report from the WHOQOL Group. Qual Life Res. 2004;13:299–310.CrossRefPubMed
29.
De Jong GJ, van Tilburg T. The De Jong Gierveld short scales for emotional and social loneliness: tested on data from 7 countries in the UN generations and gender surveys. Eur J Ageing. 2010;7(2):121–30.CrossRef
30.
Moser A, Stuck AE, Silliman RA, Ganz PA, Clough-Gorr KM. The eight-item modified Medical Outcomes Study Social Support Survey: psychometric evaluation showed excellent performance. J Clin Epidemiol. 2012;65(10):1107–16.CrossRefPubMedPubMedCentral
31.
32.
Mdege ND, Man MS, Taylor Nee Brown CA, Torgerson DJ. Systematic review of stepped wedge cluster randomized trials shows that design is particularly used to evaluate interventions during routine implementation. J Clin Epidemiol. 2011;64(9):936–48.CrossRefPubMed
33.
Liang W-M, Chen J-J, Chang C-H, Chen H-W, Chen S-L, Hang L-W, Wang J-D. An empirical comparison of the WHOQOL-BREF and the SGRQ among patients with COPD. Quality of Life Research. 2008;17(5):793-800.
34.
Skevington SM, McCrate FM. Expecting a good quality of life in health: assessing people with diverse diseases and conditions using the WHOQOL-BREF. Health Expect. 2011;15:49–62.CrossRefPubMedPubMedCentral
35.
Steinbüchel N, Lischetzke T, Gurny M, Eid M. Assessing quality of life in older people: psychometric properties of the WHOQOL-BREF. Eur J Ageing. 2006;3(2):116–22.CrossRef
36.
Groenvold M, Petersen MA, Aaronson NK, Arraras JI, Blazeby JM, Bottomley A, Fayers PM, de Graeff A, Hammerlid E, Kaasa S. The development of the EORTC QLQ-C15-PAL: a shortened questionnaire for cancer patients in palliative care. Eur J Cancer. 2006;42(1):55–64.CrossRefPubMed
37.
Steinhauser KE, Clipp EC, Bosworth HB, Mcneilly M, Christakis NA, Voils CI, Tulsky JA. Measuring quality of life at the end of life: validation of the QUAL-E. Palliat Support Care. 2004;2(01):3–14.CrossRefPubMed
38.
Preston NJ, Fayers P, Walters SJ, Pilling M, Grande GE, Short V, Owen-Jones E, Evans CJ, Benalia H, Higginson IJ, et al. Recommendations for managing missing data, attrition and response shift in palliative and end-of-life care research: Part of the MORECare research method guidance on statistical issues. Palliat Med. 2013;27(10):899–907.CrossRefPubMed
39.
McLoughlin K, Rhatigan J, McGilloway S, Kellehear A, Lucey M, Twomey F, Conroy M, Herrera-Molina E, Kumar S, Furlong M, et al. INSPIRE (INvestigating Social and PractIcal suppoRts at the End of life): Pilot randomised trial of a community social and practical support intervention for adults with life-limiting illness. BMC Palliat Care. 2015;14:65.CrossRefPubMedPubMedCentral
40.
Seitz, DP. A Cluster-Randomised Controlled Trial Evaluating the Effects of a Volunteer-Led Nonpharmacological Intervention to Reduce Neuropsychiatric Symptoms of Dementia in Long-Term Care Residents. In: ClinicalTrials.gov [Internet]. Bethesda (MD): National Library of Medicine (US). 2000-2016. Available from: URL of the record NLM Identifier: NCT 01715181. https://​clinicaltrials.​gov/​ct2/​show/​study/​NCT01715181.
41.
Burbeck R, Low J, Sampson EL, Bravery R, Hill M, Morris S, Ockenden N, Payne S, Candy B. Volunteers in specialist palliative care: a survey of adult services in the United Kingdom. J Palliat Med. 2014;17(5):568–74.CrossRefPubMedPubMedCentral
42.
Claxton-Oldfield S. Hospice palliative care volunteers: a review of commonly encountered stressors, how they cope with them, and implications for volunteer training/management. Am J Hosp Palliat Care. 2016;33(2):201–4.CrossRefPubMed
43.
Woitha K, Hasselaar J, Van Beek K, Radbruch L, Jaspers B, Engels Y, Vissers K. Volunteers in palliative care a comparison of seven European countries: a descriptive study. Pain Pract. 2015;15(6):572–9.CrossRefPubMed
44.
Walshe C, Todd C, Caress A, Chew-Graham C. Patterns of access to community palliative care services: a literature review. J Pain Symptom Manag. 2009;37(5):884–912.CrossRef
45.
Sleeman KE, Davies JM, Verne J, Gao W, Higginson IJ. The changing demographics of inpatient hospice death: Population-based cross-sectional study in England, 1993–2012. Palliat Med. 2016;30(1):45–53.CrossRefPubMedPubMedCentral
46.
Gatrell AC, Wood DJ. Variation in geographic access to specialist inpatient hospices in England and Wales. Health Place. 2012;18(4):832–40.CrossRefPubMed
47.
Ahmed N, Bestall JC, Ahmedzai SH, Payne SA, Clark D, Noble B. Systematic review of the problems and issues of accessing specialist palliative care by patients, carers and health and social care professionals. Palliat Med. 2004;18:525–42.CrossRefPubMed
48.
Burt J, Raine R. The effect of age on referral to and use of specialist palliative care services in adult cancer patients: a systematic review. Age Ageing. 2006;35(5):469–76.CrossRefPubMed
49.
National Council for Palliative Care. National Survey of Patient Activity Data for Specialist Palliative Care Services MDS Summary Report for the year 2013-2014. London: National Council for Palliative Care; 2014.
50.
Hawthorne G, Herrman H, Murphy B. Interpreting the WHOQOL-Bref: preliminary population norms and effect sizes. Soc Indic Res. 2006;77(1):37–59.CrossRef
51.
Noerholm V, Groenvold M, Watt T, Bjorner JB, Rasmussen N-A, Bech P. Quality of life in the Danish general population – normative data and validity of WHOQOL-BREF using Rasch and item response theory models. Qual Life Res. 2004;13(2):531–40.CrossRefPubMed
52.
Svensk AC, ÖSter I, Thyme KE, Magnusson E, SjÖDin M, Eisemann M, Åstrom S, Lindh J. Art therapy improves experienced quality of life among women undergoing treatment for breast cancer: a randomized controlled study. Eur J Cancer Care. 2009;18(1):69–77.CrossRef
53.
Lo Coco G, Lo Coco D, Cicero V, Oliveri A, Lo Verso G, Piccoli F, La Bella V. Individual and health-related quality of life assessment in amyotrophic lateral sclerosis patients and their caregivers. J Neurol Sci. 2005;238(1-2):11–7.CrossRefPubMed
54.
Galfin JM, Watkins ER, Harlow T. A brief guided self-help intervention for psychological distress in palliative care patients: a randomised controlled trial. Palliat Med. 2012;26(3):197–205.CrossRefPubMed
55.
Walshe C, Chew-Graham C, Todd C, Caress A. What influences referrals within community palliative care services? A qualitative case study. Soc Sci Med. 2008;67(1):137–46.CrossRefPubMed
56.
Dixon JK, Matosevic D, Clark T, Knapp M. Equity in the provision of palliative care in the UK: review of evidence. London: London School of Economics; 2015.
57.
Department of Health. End of Life Care Strategy. Promoting High Quality Care for all Adults at the End of Life. London: DoH; 2008.
58.
Leonard R, Horsfall D, Noonan K. Identifying changes in the support networks of end-of-life carers using social network analysis. BMJ Support Palliat Care. 2015;5(2):153–9.CrossRefPubMed
Metadata
Title
How effective are volunteers at supporting people in their last year of life? A pragmatic randomised wait-list trial in palliative care (ELSA)
Authors
Catherine Walshe
Steven Dodd
Matt Hill
Nick Ockenden
Sheila Payne
Nancy Preston
Guillermo Perez Algorta
Publication date
01-12-2016
Publisher
BioMed Central
Published in
BMC Medicine / Issue 1/2016
Electronic ISSN: 1741-7015
DOI
https://doi.org/10.1186/s12916-016-0746-8

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