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Effects of Palliative Care for Progressive Neurologic Diseases: A Systematic Review and Meta-Analysis

Published:December 05, 2022DOI:https://doi.org/10.1016/j.jamda.2022.11.001

      Abstract

      Objectives

      To determine the association of palliative care for progressive neurologic diseases with patient- and caregiver-centered outcomes.

      Design

      Systematic review and meta-analysis of randomized controlled trials and quasi-experimental studies, including pilot studies.

      Setting and Participants

      Adults with progressive neurologic diseases (dementia, multiple sclerosis, Parkinson’s disease, motor neuron disease, multiple system atrophy, and progressive supranuclear palsy) and their caregivers.

      Methods

      MEDLINE, EMBASE, CINAHL PLUS, Cochrane CENTRAL, and PubMed were searched from inception to September 2021. Two reviewers independently screened studies, extracted data, and assessed risk of bias using the Cochrane risk of bias tools. Narrative synthesis was conducted. Patient quality of life (QoL), symptom burden, caregiver burden, and satisfaction with care were meta-analyzed using a random-effects model.

      Results

      Fifteen trials provided data on 3431 patients (mean age, 73.9 years). Compared with usual care, palliative care was statistically significantly associated with lower symptom burden [standardized mean difference (SMD), −0.34 (95% Cl, −0.59 to −0.09)] and higher caregiver satisfaction [SMD, 0.41 (95% Cl, 0.12 to 0.71)] and patient satisfaction [SMD, 0.43 (95% Cl, −0.01 to 0.87)]. However, the associations were not significant after excluding studies with high risk of bias. Insignificant associations of palliative care with caregiver burden [SMD, −0.09 (95% Cl, −0.21 to 0.03)] and patient QoL [SMD, 0.19 (95% Cl, −0.07 to 0.44)] were observed.

      Conclusions and Implications

      Palliative care is likely to improve symptom burden and satisfaction with care among patients with progressive neurologic diseases and their caregivers, while its effects on QoL and caregiver burden remains inconclusive. Specific intervention components including interdisciplinary team, palliative care physicians, home visits, and spiritual care appeared to be associated with increased effects on improving palliative outcomes. More rigorous designed studies are warranted to examine the effects of neuropalliative care, effective intervention components, optimal timing, and symptom triggers of palliative care referrals.

      Keywords

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      References

        • Feigin V.L.
        • Abajobir A.A.
        • Abate K.H.
        • et al.
        Global, regional, and national burden of neurological disorders during 1990-2015: a systematic analysis for the Global Burden of Disease Study 2015.
        Lancet Neurol. 2017; 16: 877-897
        • Saleem T.
        • Leigh P.N.
        • Higginson I.J.
        Symptom prevalence among people affected by advanced and progressive neurological conditions—a systematic review.
        J Palliat Care. 2007; 23: 291-299
        • Kwok J.Y.Y.
        • Huang T.W.
        • Tretriluxana J.
        • et al.
        Symptom burden and unmet support needs of patients with Parkinson's disease: a cross-sectional study in Asia-Pacific regions.
        J Am Med Dir Assoc. 2021; 22: 1255-1264
        • Kwok J.Y.Y.
        • Auyeung M.
        • Chan H.Y.L.
        Examining factors related to health-related quality of life in people with Parkinson's disease.
        Rehabil Nurs. 2020; 45: 122-130
        • Hepgul N.
        • Gao W.
        • Evans C.J.
        • et al.
        Integrating palliative care into neurology services: what do the professionals say?.
        BMJ Support Palliat Care. 2018; 8: 41-44
        • Kwok J.Y.Y.
        • Lee J.J.
        • Auyeung M.
        • Chan M.L.
        • Chan H.Y.L.
        Letting nature take its course: A qualitative exploration of the illness and adjustment experiences of Hong Kong Chinese people with Parkinson's disease.
        Health Soc Care Community. 2020; 28: 2343-2351
        • Peters M.
        • Jenkinson C.
        • Doll H.
        • Playford E.D.
        • Fitzpatrick R.
        Carer quality of life and experiences of health services: a cross-sectional survey across three neurological conditions.
        Health Qual Life Outcomes. 2013; 11: 103
        • Boersma I.
        • Jones J.
        • Coughlan C.
        • et al.
        Palliative care and Parkinson's disease: caregiver perspectives.
        J Palliat Med. 2017; 20: 930-938
        • Ferrell B.R.
        • Twaddle M.L.
        • Melnick A.
        • Meier D.E.
        National consensus project clinical practice guidelines for quality palliative care guidelines, 4th edition.
        J Palliat Med. 2018; 21: 1684-1689
        • Clark D.
        From margins to centre: a review of the history of palliative care in cancer.
        Lancet Oncol. 2007; 8: 430-438
        • Murray S.A.
        • Kendall M.
        • Mitchell G.
        • Moine S.
        • Amblàs-Novellas J.
        • Boyd K.
        Palliative care from diagnosis to death.
        BMJ. 2017; 356: j878
        • Gómez-Batiste X.
        • Murray S.A.
        • Thomas K.
        • et al.
        Comprehensive and integrated palliative Care for people with advanced chronic conditions: an update from several European initiatives and recommendations for policy.
        J Pain Symptom Manage. 2017; 53: 509-517
        • Kluger B.M.
        • Fox S.
        • Timmons S.
        • et al.
        Palliative care and Parkinson's disease: Meeting summary and recommendations for clinical research.
        Parkinsonism Relat Disord. 2017; 37: 19-26
        • Oliver D.J.
        • Borasio G.D.
        • Caraceni A.
        • et al.
        A consensus review on the development of palliative care for patients with chronic and progressive neurological disease.
        Eur J Neurol. 2016; 23: 30-38
        • Taylor L.P.
        • Besbris J.M.
        • Graf W.D.
        • Rubin M.A.
        • Cruz-Flores S.
        • Epstein L.G.
        Clinical guidance in neuropalliative care: an AAN position statement.
        Neurology. 2022; 98: 409-416
        • Kavalieratos D.
        • Corbelli J.
        • Zhang D.
        • et al.
        Association between palliative care and patient and caregiver outcomes: a systematic review and meta-analysis.
        JAMA. 2016; 316: 2104-2114
        • Quinn K.L.
        • Shurrab M.
        • Gitau K.
        • et al.
        Association of receipt of palliative care interventions with health care use, quality of life, and symptom burden among adults with chronic noncancer illness: a systematic review and meta-analysis.
        JAMA. 2020; 324: 1439-1450
        • Latorraca C.O.
        • Martimbianco A.L.C.
        • Pachito D.V.
        • et al.
        Palliative care interventions for people with multiple sclerosis.
        Cochrane Database Syst Rev. 2019; 10: Cd012936
        • Murphy E.
        • Froggatt K.
        • Connolly S.
        • et al.
        Palliative care interventions in advanced dementia.
        Cochrane Database Syst Rev. 2016; 12: Cd011513
        • Gao W.
        • Wilson R.
        • Hepgul N.
        • et al.
        Effect of short-term integrated palliative care on patient-reported outcomes among patients severely affected with long-term neurological conditions: a randomized clinical trial.
        JAMA Netw Open. 2020; 3: e2015061
        • Veronese S.
        • Gallo G.
        • Valle A.
        • et al.
        Specialist palliative care improves the quality of life in advanced neurodegenerative disorders: NE-PAL, a pilot randomised controlled study.
        BMJ Support Palliat Care. 2017; 7: 164-172
        • Buzgova R.
        • Kozakova R.
        • Bar M.
        The effect of neuropalliative care on quality of life and satisfaction with quality of care in patients with progressive neurological disease and their family caregivers: an interventional control study.
        BMC Palliat Care. 2020; 19: 143
        • Solari A.
        • Giordano A.
        • Patti F.
        • et al.
        Randomized controlled trial of a home-based palliative approach for people with severe multiple sclerosis.
        Mult Scler. 2018; 24: 663-674
        • Kluger B.M.
        • Miyasaki J.
        • Katz M.
        • et al.
        Comparison of integrated outpatient palliative care with standard care in patients with Parkinson disease and related disorders: a randomized clinical trial.
        JAMA Neurol. 2020; 77: 551-560
        • Higgins J.P.T.
        • Thomas J.
        • Chandler J.
        • et al.
        Cochrane Handbook for Systematic Reviews of Interventions version 6.2 [online].
        www.training.cochrane.org/handbook
        Date accessed: December 11, 2021
        • Edmonds P.
        • Hart S.
        • Gao W.
        • et al.
        Palliative care for people severely affected by multiple sclerosis: evaluation of a novel palliative care service.
        Mult Scler. 2010; 16: 627-636
        • Husebo B.S.
        • Ballard C.
        • Aarsland D.
        • et al.
        The effect of a multicomponent intervention on quality of life in residents of nursing homes: a randomized controlled trial (COSMOS).
        J Am Med Dir Assoc. 2019; 20: 330-339
        • Van Den Block L.
        • Honinx E.
        • Pivodic L.
        • et al.
        Evaluation of a palliative care program for nursing homes in 7 countries: The PACE cluster-randomized clinical trial.
        JAMA Intern Med. 2020; 180: 233-242
        • Possin K.L.
        • Merrilees J.J.
        • Dulaney S.
        • et al.
        Effect of collaborative dementia care via telephone and internet on quality of life, caregiver well-being, and health care use: the care ecosystem randomized clinical trial.
        JAMA Intern Med. 2019; 179: 1658-1667
        • Agar M.
        • Luckett T.
        • Luscombe G.
        • et al.
        Effects of facilitated family case conferencing for advanced dementia: A cluster randomised clinical trial.
        PLoS One. 2017; 12: e0181020
        • Hanson L.C.
        • Kistler C.E.
        • Lavin K.
        • et al.
        Triggered palliative care for late-stage dementia: a pilot randomized trial.
        J Pain Symptom Manage. 2019; 57: 10-19
        • Sampson E.L.
        • Jones L.
        • Thune-Boyle I.C.
        • et al.
        Palliative assessment and advance care planning in severe dementia: An exploratory randomized controlled trial of a complex intervention.
        Palliat Med. 2011; 25: 197-209
        • Bužgová R.
        • Kozáková R.
        • Bar M.
        Satisfaction of Patients With Severe Multiple Sclerosis and Their Family Members With Palliative Care: Interventional Study.
        Am J Hosp Palliat Care. 2020; (1049909120985422)
        • Ahronheim J.C.
        • Morrison R.S.
        • Morris J.
        • Baskin S.
        • Meier D.E.
        Palliative care in advanced dementia: A randomized controlled trial and descriptive analysis.
        J Palliat Med. 2000; 3: 265-273
        • Verreault R.
        • Arcand M.
        • Misson L.
        • et al.
        Quasi-experimental evaluation of a multifaceted intervention to improve quality of end-of-life care and quality of dying for patients with advanced dementia in long-term care institutions.
        Palliat Med. 2018; 32: 613-621
        • Walsh S.C.
        • Murphy E.
        • Devane D.
        • et al.
        Palliative care interventions in advanced dementia.
        Cochrane Database Syst Rev. 2021; 9: Cd011513
        • Tramonti F.
        • Bonfiglio L.
        • Bongioanni P.
        • et al.
        Caregiver burden and family functioning in different neurological diseases.
        Psychol Health Med. 2019; 24: 27-34
        • Hearn J.
        • Higginson I.J.
        Do specialist palliative care teams improve outcomes for cancer patients? A systematic literature review.
        Palliat Med. 1998; 12: 317-332
        • Ernecoff N.C.
        • Check D.
        • Bannon M.
        • et al.
        Comparing specialty and primary palliative care interventions: analysis of a systematic review.
        J Palliat Med. 2020; 23: 389-396
        • Quill T.E.
        • Abernethy A.P.
        Generalist plus specialist palliative care--creating a more sustainable model.
        N Engl J Med. 2013; 368: 1173-1175
        • Dunlay S.M.
        • Strand J.J.
        How to discuss goals of care with patients.
        Trends Cardiovasc Med. 2016; 26: 36-43
        • Gomes B.
        • Calanzani N.
        • Curiale V.
        • McCrone P.
        • Higginson I.J.
        Effectiveness and cost-effectiveness of home palliative care services for adults with advanced illness and their caregivers.
        Cochrane Database Syst Rev. 2013; : Cd007760
        • Zaman M.S.
        • Ghahari S.
        • McColl M.A.
        Barriers to accessing healthcare services for people with Parkinson’s disease: a scoping review.
        J Parkinson's Dis. 2021; 11: 1537-1553
        • Paal P.
        • Lex K.M.
        • Brandstötter C.
        • Weck C.
        • Lorenzl S.
        Spiritual care as an integrated approach to palliative care for patients with neurodegenerative diseases and their caregivers: a literature review.
        Ann Palliat Med. 2020; 9: 2303-2313
        • Prizer L.P.
        • Kluger B.M.
        • Sillau S.
        • Katz M.
        • Galifianakis N.
        • Miyasaki J.M.
        Correlates of spiritual wellbeing in persons living with Parkinson disease.
        Ann Palliat Med. 2020; 9: S16-S23
        • Kwok J.Y.Y.
        • Choi E.P.H.
        • Lee J.J.
        • et al.
        Effects of mindfulness yoga versus conventional physical exercises on symptom experiences and health-related quality of life in people with Parkinson’s disease: the potential mediating roles of anxiety and depression.
        Ann Behav Med. 2022; 56: 1068-1081
        • Kwok J.Y.Y.
        • Choi E.P.H.
        • Chau P.H.
        • Wong J.Y.H.
        • Fong D.Y.T.
        • Auyeung M.
        Effects of spiritual resilience on psychological distress and health-related quality of life in Chinese people with Parkinson's disease.
        Qual Life Res. 2020; 29: 3065-3073
        • Kwok J.Y.Y.
        • Kwan J.C.Y.
        • Auyeung M.
        • et al.
        Effects of mindfulness yoga vs stretching and resistance training exercises on anxiety and depression for people with Parkinson disease: a randomized clinical trial.
        JAMA Neurol. 2019; 76: 755-763
        • Murray S.A.
        • Kendall M.
        • Boyd K.
        • Sheikh A.
        Illness trajectories and palliative care.
        BMJ. 2005; 330: 1007-1011
        • World Health Organization
        Strengthening of palliative care as a component of integrated treatment throughout the life course.
        J Pain Palliat Care Pharmacother. 2014; 28: 130-134
        • Sepúlveda C.
        • Marlin A.
        • Yoshida T.
        • Ullrich A.
        Palliative care: the World Health Organization's global perspective.
        J Pain Symptom Manage. 2002; 24: 91-96
        • Gijsberts M.H.E.
        • Liefbroer A.I.
        • Otten R.
        • Olsman E.
        Spiritual care in palliative care: a systematic review of the recent European literature.
        Med Sci (Basel). 2019; 7: 25
        • Lee J.
        • Kim Y.
        • Kim S.
        • Kim Y.
        • Lee Y.J.
        • Sohn Y.H.
        Unmet needs of people with Parkinson's disease: A cross-sectional study.
        J Adv Nurs. 2019; 75: 3504-3514
        • Boersma I.
        • Jones J.
        • Carter J.
        • et al.
        Parkinson disease patients' perspectives on palliative care needs: What are they telling us?.
        Neurol Clin Pract. 2016; 6: 209-219
        • Vigna P.M.
        • de Castro I.
        • Fumis R.R.L.
        Spirituality alleviates the burden on family members caring for patients receiving palliative care exclusively.
        BMC Palliat Care. 2020; 19: 77
        • Carpenter J.G.
        • Lam K.
        • Ritter A.Z.
        • Ersek M.
        A Systematic review of nursing home palliative care interventions: characteristics and outcomes.
        J Am Med Dir Assoc. 2020; 21: 583-596.e582
        • Kamal A.H.
        • Bull J.H.
        • Swetz K.M.
        • Wolf S.P.
        • Shanafelt T.D.
        • Myers E.R.
        Future of the palliative care workforce: preview to an impending crisis.
        Am J Med. 2017; 130: 113-114
        • Creutzfeldt C.J.
        • Kluger B.
        • Kelly A.G.
        • et al.
        Neuropalliative care: priorities to move the field forward.
        Neurology. 2018; 91: 217-226
        • Kluger B.M.
        • Persenaire M.J.
        • Holden S.K.
        • et al.
        Implementation issues relevant to outpatient neurology palliative care.
        Ann Palliat Med. 2018; 7: 339-348
        • Boersma I.
        • Miyasaki J.
        • Kutner J.
        • Kluger B.
        Palliative care and neurology: time for a paradigm shift.
        Neurology. 2014; 83: 561-567