Unmet care needs of community-dwelling stroke survivors: a protocol for systematic review and theme analysis of quantitative and qualitative studies

Beilei Lin, Chunge Ding, Yongxia Mei, Panpan Wang, Fayang Ma, Zhen-Xiang Zhang, Beilei Lin, Chunge Ding, Yongxia Mei, Panpan Wang, Fayang Ma, Zhen-Xiang Zhang

Abstract

Introduction: Stroke is a leading cause of disability worldwide. The average hospital length of stay ranges from 3 to 28 days, and after discharge home the stroke survivors will live with physical, cognitive, even psychological disorders for the rest of their lives. It is essential to review the unmet needs of stroke survivors.

Methods and analysis: A systematic review of previous quantitative and qualitative studies reporting the unmet needs of stroke survivors in their homes will be conducted. The following six databases will be searched from inception to December 2018 for relevant articles: PubMed, EMBASE, CINAHL, PsycINFO, SCOPUS and China Biology Medicine. We will include studies limited to human and published in English or Chinese, and the patients with stroke should discharge home rather than any other professional organisations including nursing homes or community rehabilitation units and so on. Data of quantitative research will be standardised for comparison, thematic analysis will be used for qualitative data and a narrative synthesis and pooled analysis of the main outcomes will be reported.

Ethics and dissemination: This review will be submitted to an international professional journal, and the detailed search strategies and analysis flowchart will be openly included as supplements. This study does not require ethical approval as no patient's identifiable data will be used. Our findings will give a new look at the aspect of stroke survivors' unmet needs in their long-term recovery stage, especially the trajectories of unmet needs at different timepoints. What is more, this review will demonstrate the long-term unmet needs of stroke survivors from different countries, will compare any variations between high-income and low-income regions, and the geographical differences of needs will be mapped if necessary. We will endeavour to provide as much information as possible to healthcare professionals and public health policy makers in order to promote further medical reform.

Trial registration number: CRD42018112181.

Keywords: community-dwelling; home; stroke; systematic review; unmet needs.

Conflict of interest statement

Competing interests: None declared.

© Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.

References

    1. Feigin VL, Norrving B, Mensah GA. Global Burden of Stroke. Circ Res 2017;120:439–48. 10.1161/CIRCRESAHA.116.308413
    1. Krishnamurthi RV, Feigin VL, Forouzanfar MH, et al. . Global and regional burden of first-ever ischaemic and haemorrhagic stroke during 1990-2010: findings from the Global Burden of Disease Study 2010. Lancet Glob Health 2013;1:e259–e281. 10.1016/S2214-109X(13)70089-5
    1. Miller EL, Murray L, Richards L, et al. . Comprehensive overview of nursing and interdisciplinary rehabilitation care of the stroke patient: a scientific statement from the American Heart Association. Stroke 2010;41:2402–48. 10.1161/STR.0b013e3181e7512b
    1. Jamison J, Ayerbe L, Di Tanna GL, et al. . Evaluating practical support stroke survivors get with medicines and unmet needs in primary care: a survey. BMJ Open 2018;8:e019874 10.1136/bmjopen-2017-019874
    1. Feigin VL, Krishnamurthi RV, Parmar P, et al. . Update on the Global Burden of Ischemic and Hemorrhagic Stroke in 1990-2013: The GBD 2013 Study. Neuroepidemiology 2015;45:161–76. 10.1159/000441085
    1. Krishnamurthi RV, Moran AE, Feigin VL, et al. . Stroke Prevalence, Mortality and Disability-Adjusted Life Years in Adults Aged 20-64 Years in 1990-2013: Data from the Global Burden of Disease 2013 Study. Neuroepidemiology 2015;45:190–202. 10.1159/000441098
    1. Wang W, Jiang B, Sun H, et al. . Prevalence, Incidence, and Mortality of Stroke in China: Results from a Nationwide Population-Based Survey of 480 687 Adults. Circulation 2017;135:759–71. 10.1161/CIRCULATIONAHA.116.025250
    1. Kim AS, Cahill E, Cheng NT. Global Stroke Belt: Geographic Variation in Stroke Burden Worldwide. Stroke 2015;46:3564–70. 10.1161/STROKEAHA.115.008226
    1. Olaiya MT, Cadilhac DA, Kim J, et al. . Long-term unmet needs and associated factors in stroke or TIA survivors: An observational study. Neurology 2017;89:68–75. 10.1212/WNL.0000000000004063
    1. Jerome D, Dehail P, Daviet JC, et al. . Stroke in under-75-year-olds: expectations, concerns and needs. Ann Phys Rehabil Med 2009;52:525–37. 10.1016/j.rehab.2009.06.007
    1. Forster A. LoTS care LUNS study team. Validation of the longer-term unmet needs after stroke (LUNS) monitoring tool: a multicentre study. Clin Rehabil 2013;27:1020–8. 10.1177/0269215513487082
    1. Boerboom W, Heijenbrok-Kal MH, van Kooten F, et al. . Unmet needs, community integration and employment status four years after subarachnoid haemorrhage. J Rehabil Med 2016;48:529–34. 10.2340/16501977-2096
    1. Yagi M, Yasunaga H, Matsui H, et al. . Impact of Rehabilitation on Outcomes in Patients With Ischemic Stroke: A Nationwide Retrospective Cohort Study in Japan. Stroke 2017;48:740–6. 10.1161/STROKEAHA.116.015147
    1. Walker RW, Wakefield K, Gray WK, et al. . Case-fatality and disability in the Tanzanian Stroke Incidence Project cohort. Acta Neurol Scand 2016;133:49–54. 10.1111/ane.12422
    1. Crichton SL, Bray BD, McKevitt C, et al. . Patient outcomes up to 15 years after stroke: survival, disability, quality of life, cognition and mental health. J Neurol Neurosurg Psychiatry 2016;87:1091–8. 10.1136/jnnp-2016-313361
    1. McKevitt C, Fudge N, Redfern J, et al. . Self-reported long-term needs after stroke. Stroke 2011;42:1398–403. 10.1161/STROKEAHA.110.598839
    1. Andrew NE, Kilkenny M, Naylor R, et al. . Understanding long-term unmet needs in Australian survivors of stroke. Int J Stroke 2014;9 Suppl A100:106–12. 10.1111/ijs.12325
    1. Allgeier C, Kämmerle-Hofrichte I, Braun S, et al. . [Determining the support needs of patients who live at home following a stroke]. Pflege 2005;18:373–80. 10.1024/1012-5302.18.6.373
    1. Andrew NE, et al. . Differences in long-term unmet needs between younger and older stroke survivors. Cerebrovascular Diseases 2013;35:791.
    1. Bernikier D, Sautreau R, Kammoun B, et al. . Educational needs of post-stroke patients and their caregivers. Ann Phys Rehabil Med 2013;56:e144 10.1016/j.rehab.2013.07.300
    1. Brandriet LM, Lyons M, Bentley J. Perceived needs of poststroke elders following termination of home health services. Nurs Health Care 1994;15:11.
    1. Yoon S, et al. . Post stroke culturally-sensitive care needs: Comparison of functioning and disability and contextual factors among hispanic and non-hispanic urban dwellers. Cerebrovascular Diseases 2012;33:485–6.
    1. Johnson J, Pearson V, McDivitt L. Stroke rehabilitation: assessing stroke survivors' long-term learning needs. Rehabil Nurs 1997;22:243–8. 10.1002/j.2048-7940.1997.tb02110.x
    1. Ward A, Payne KA, Caro JJ, et al. . Care needs and economic consequences after acute ischemic stroke: the Erlangen Stroke Project. Eur J Neurol 2005;12:264–7. 10.1111/j.1468-1331.2004.00949.x
    1. Ullberg T, Zia E, Petersson J, et al. . Perceived unmet rehabilitation needs 1 year after stroke: An observational study from the swedish stroke register. Stroke 2016;47:539–41. 10.1161/STROKEAHA.115.011670
    1. Iosa M, Lupo A, Morone G, et al. . Post soft care: Italian implementation of a post-stroke checklist software for primary care and identification of unmet needs in community-dwelling patients. Neurol Sci 2018;39:135–9. 10.1007/s10072-017-3140-1
    1. Magaard G, Wester P, Levi R, et al. . Identifying unmet rehabilitation needs in patients after stroke with a graphic rehab-compassTM. J Stroke Cerebrovasc Dis 2018;27:3224–35. 10.1016/j.jstrokecerebrovasdis.2018.07.013
    1. Pindus D, et al. . The experiences ofand need for primary careand community health services in informal carers of stroke survivors - A systematic qualitative review. European Stroke Journal 2016;1:570–1.
    1. Pindus DM, Mullis R, Lim L, et al. . Stroke survivors' and informal caregivers' experiences of primary care and community healthcare services - A systematic review and meta-ethnography. PLoS One 2018;13 10.1371/journal.pone.0192533
    1. Wray F, Clarke D, Forster A. The needs of stroke survivors with communication difficulties living in the community: A systematic review and thematic synthesis of qualitative studies. International Journal of Stroke 2016;11:49.
    1. Wray F, Clarke D. Longer-term needs of stroke survivors with communication difficulties living in the community: a systematic review and thematic synthesis of qualitative studies. BMJ Open 2017;7:e017944 10.1136/bmjopen-2017-017944
    1. Woodman P, Riazi A, Pereira C, et al. . Social participation post stroke: a meta-ethnographic review of the experiences and views of community-dwelling stroke survivors. Disabil Rehabil 2014;36:2031–43. 10.3109/09638288.2014.887796
    1. Williams S, Murray C. The experience of engaging in occupation following stroke: A qualitative meta-synthesis. British Journal of Occupational Therapy 2013;76:370–8. 10.4276/030802213X13757040168351
    1. Kamel AA, Bond E, Froelicher ES. Stroke patients' caregivers: Their experiences and needs: A qualitative literature review. Jordan Medical Journal 2009;43:341–50.
    1. Quinn K, Murray C, Malone C. Spousal experiences of coping with and adapting to caregiving for a partner who has a stroke: a meta-synthesis of qualitative research. Disabil Rehabil 2014;36:185–98. 10.3109/09638288.2013.783630
    1. Pindus D, et al. . Stroke survivors' experiences of and need for primary care and community health services - A systematic review of the qualitative literature. European Stroke Journal 2016;1:570.
    1. Lloyd A, Bannigan K, Sugavanam T, et al. . Experiences of stroke survivors, their families and unpaid carers in goal setting within stroke rehabilitation: a systematic review of qualitative evidence. JBI Database System Rev Implement Rep 2018;16:1418–53. 10.11124/JBISRIR-2017-003499
    1. Lee N, Aries A, Hunter S. The long-term needs of stroke survivors: A systematic review. International Journal of Stroke 2014;9:42.
    1. Vincent C, Deaudelin I, Robichaud L, et al. . Rehabilitation needs for older adults with stroke living at home: perceptions of four populations. BMC Geriatr 2007;7:20 10.1186/1471-2318-7-20
    1. Andrew NE, et al. . Long-term unmet needs of community dwelling stroke survivors and carers in Australia. Cerebrovascular Diseases 2013;35:792.
    1. De Bartolo D, Morone G, Lupo A, et al. . From paper to informatics: the Post Soft Care-App, an easy-to-use and fast tool to help therapists identify unmet needs in stroke patients. Funct Neurol 2018;33:200–5.
    1. Walsh ME, Galvin R, Loughnane C, et al. . Community re-integration and long-term need in the first five years after stroke: results from a national survey. Disabil Rehabil 2015;37:1834–8. 10.3109/09638288.2014.981302
    1. Crow J. A 2-week stroke review identifies unmet needs in patients discharged home from a hyperacute stroke unit. British Journal of Neuroscience Nursing 2018;14:29–35. 10.12968/bjnn.2018.14.1.29
    1. Bernhardt J, Hayward KS, Kwakkel G, et al. . Agreed definitions and a shared vision for new standards in stroke recovery research: The Stroke Recovery and Rehabilitation Roundtable taskforce. Int J Stroke 2017;12:444–50. 10.1177/1747493017711816
    1. Dugani S, Afari H, Hirschhorn LR, et al. . Prevalence and factors associated with burnout among frontline primary health care providers in low- and middle-income countries: A systematic review. Gates Open Res 2018;2:4 10.12688/gatesopenres.12779.3
    1. Moher D, Shamseer L, Clarke M, et al. . Preferred reporting items for systematic review and meta-analysis protocols (PRISMA-P) 2015 statement . Syst Rev 2015;4:1 10.1186/2046-4053-4-1
    1. Cheng D, Qu Z, Huang J, et al. . Motivational interviewing for improving recovery after stroke. Cochrane Database Syst Rev 2015;6:Cd011398 10.1002/14651858.CD011398.pub2
    1. Bridgwood B, Lager KE, Mistri AK, et al. . Interventions for improving modifiable risk factor control in the secondary prevention of stroke. Cochrane Database Syst Rev 2018;5:Cd009103 10.1002/14651858.CD009103.pub3
    1. Lambert SD, Harrison JD, Smith E, et al. . The unmet needs of partners and caregivers of adults diagnosed with cancer: a systematic review. BMJ Support Palliat Care 2012;2:224–30. 10.1136/bmjspcare-2012-000226
    1. Moghaddam N, Coxon H, Nabarro S, et al. . Unmet care needs in people living with advanced cancer: a systematic review. Support Care Cancer 2016;24:3609–22. 10.1007/s00520-016-3221-3
    1. Valery PC, Powell E, Moses N, et al. . Systematic review: unmet supportive care needs in people diagnosed with chronic liver disease. BMJ Open 2015;5:e007451 10.1136/bmjopen-2014-007451
    1. Menz HB, Auhl M, Spink MJ. Foot problems as a risk factor for falls in community-dwelling older people: A systematic review and meta-analysis. Maturitas 2018;118:7–14. 10.1016/j.maturitas.2018.10.001
    1. Denham AMJ, Baker AL, Spratt N, et al. . The unmet needs of informal carers of stroke survivors: a protocol for a systematic review of quantitative and qualitative studies. BMJ Open 2018;8:e019571 10.1136/bmjopen-2017-019571
    1. Institute, T.J.B. JBI critical appraisal instrument for qualitative research. 2017. (cited 4 Dec 2018); Available from: .
    1. National Heart, L., and Blood Institue. Study quality assessment tools. 2018. (cited 29 Nov 2018).
    1. Souto RQ, Khanassov V, Hong QN, et al. . Systematic mixed studies reviews: updating results on the reliability and efficiency of the Mixed Methods Appraisal Tool. Int J Nurs Stud 2015;52:500–1. 10.1016/j.ijnurstu.2014.08.010
    1. Gardner T, Refshauge K, Smith L, et al. . Physiotherapists' beliefs and attitudes influence clinical practice in chronic low back pain: a systematic review of quantitative and qualitative studies. J Physiother 2017;63:132–43. 10.1016/j.jphys.2017.05.017
    1. van den Berg MMJ, Dancet EAF, Erlikh T, et al. . Patient-centered early pregnancy care: a systematic review of quantitative and qualitative studies on the perspectives of women and their partners. Hum Reprod Update 2018;24:106–18. 10.1093/humupd/dmx030

Source: PubMed

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