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Published in: BMC Health Services Research 1/2024

Open Access 01-12-2024 | Parkinson's Disease | Research

Intervention components in the self-management of Parkinson’s: a mixed-methods synthesis of qualitative and quantitative evidence

Authors: Megan Armstrong, Kate Walters, Nathan Davies, Danielle Nimmons, Jennifer Pigott, Joy Read, Anette Schrag

Published in: BMC Health Services Research | Issue 1/2024

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Abstract

Introduction

Self-management interventions consist of multiple components to support people in the management of medical, emotional, and behavioural aspects of their condition, and aim to improve quality of life, function, and other outcomes. A systematic review of self-management interventions in Parkinson’s showed no conclusive evidence for effectiveness of specific self-management approaches in Parkinson’s to date but identified several potentially useful components.

Aim

To identify the key required components for self-management in people with Parkinson’s by synthesising evidence from a body of primary qualitative evidence and systematic reviews, and to explore which of these key components should be incorporated into trials of self-management in Parkinson’s.

Method

A mixed-methods synthesis was conducted. We combined data from two primary qualitative studies and a systematic review of qualitative studies that focused on self-management in Parkinson’s to identify key intervention components. These were then mapped onto the results of a systematic review of Randomised Controlled Trials (RCTs) using matrices. First, data were extracted from the qualitative studies with people with Parkinson’s and healthcare professionals on the key self-management components in this population. Second, a matrix table was created to map the identified Parkinson’s specific self-management components against potential effectiveness from published RCTs of self-management interventions.

Results

Synthesis of qualitative data identified 15 potential self-management components. These 15 components included components needed to start self-managing (e.g., information, skill acquirement) and components needed to maintain self-managing (e.g., self-motoring, increasing motivation). From 18 RCTs, interventions varied in how many components were included (range 1–10). Trials reporting significant beneficial effects of their intervention included a higher number of components (4 or more self-management components) than trials without significant findings (1–3 self-management components).

Conclusion

Fifteen key self-management components were identified that should be incorporated into interventions or programs of self-management in Parkinson’s. No current trial has incorporated all aspects, but a higher number of these key components appears to make trials of self-management interventions more likely to be successful.
Literature
2.
go back to reference Sveinbjornsdottir S. The clinical symptoms of Parkinson’s disease. J Neurochem. 2016;139:318–24.CrossRefPubMed Sveinbjornsdottir S. The clinical symptoms of Parkinson’s disease. J Neurochem. 2016;139:318–24.CrossRefPubMed
3.
go back to reference Corbin J, Strauss A. Managing chronic illness at home: three lines of work. Qual Sociol. 1985;8(3):224–47.CrossRef Corbin J, Strauss A. Managing chronic illness at home: three lines of work. Qual Sociol. 1985;8(3):224–47.CrossRef
4.
go back to reference Lau-Walker M, Thompson DR. Self-management in long-term health conditions—a complex concept poorly understood and applied? Patient Educ Couns. 2009;75(2):290–2.CrossRefPubMed Lau-Walker M, Thompson DR. Self-management in long-term health conditions—a complex concept poorly understood and applied? Patient Educ Couns. 2009;75(2):290–2.CrossRefPubMed
5.
go back to reference Kessler D, Liddy C. Self-management support programs for persons with Parkinson’s disease: an integrative review. Patient Educ Couns. 2017;100(10):1787–95.CrossRefPubMed Kessler D, Liddy C. Self-management support programs for persons with Parkinson’s disease: an integrative review. Patient Educ Couns. 2017;100(10):1787–95.CrossRefPubMed
6.
go back to reference Corbin JM, Strauss A. Unending work and care: managing chronic illness at home. San Francisco: Jossey-Bass; 1988. Corbin JM, Strauss A. Unending work and care: managing chronic illness at home. San Francisco: Jossey-Bass; 1988.
7.
go back to reference Newman S, Steed L, Mulligan K. Self-management interventions for chronic illness. Lancet. 2004;364(9444):1523–37.CrossRefPubMed Newman S, Steed L, Mulligan K. Self-management interventions for chronic illness. Lancet. 2004;364(9444):1523–37.CrossRefPubMed
8.
go back to reference Pearce G, et al. The PRISMS taxonomy of self-management support: derivation of a novel taxonomy and initial testing of its utility. J Health Serv Res Policy. 2016;21(2):73–82.CrossRefPubMed Pearce G, et al. The PRISMS taxonomy of self-management support: derivation of a novel taxonomy and initial testing of its utility. J Health Serv Res Policy. 2016;21(2):73–82.CrossRefPubMed
9.
go back to reference Taylor SJ, et al. A rapid synthesis of the evidence on interventions supporting self-management for people with long-term conditions: PRISMS–Practical systematic Review of Self-Management Support for long-term conditions. 2014. Taylor SJ, et al. A rapid synthesis of the evidence on interventions supporting self-management for people with long-term conditions: PRISMS–Practical systematic Review of Self-Management Support for long-term conditions. 2014.
10.
go back to reference Dixon L, et al. Occupational therapy for patients with Parkinson’s disease. Cochrane Database Syst Rev. 2007;2007(3):CD002813.PubMedPubMedCentral Dixon L, et al. Occupational therapy for patients with Parkinson’s disease. Cochrane Database Syst Rev. 2007;2007(3):CD002813.PubMedPubMedCentral
11.
go back to reference Armstrong M, et al. Health care professionals’ perspectives on self-management for people with Parkinson’s: qualitative findings from a UK study. BMC Geriatr. 2021;21(1):1–11.CrossRef Armstrong M, et al. Health care professionals’ perspectives on self-management for people with Parkinson’s: qualitative findings from a UK study. BMC Geriatr. 2021;21(1):1–11.CrossRef
12.
go back to reference Tuijt R, et al. Self-management components as experienced by people with Parkinson’s disease and their carers: a systematic review and synthesis of the qualitative literature. Parkinson’s Dis. 2020;2020:8857385. Tuijt R, et al. Self-management components as experienced by people with Parkinson’s disease and their carers: a systematic review and synthesis of the qualitative literature. Parkinson’s Dis. 2020;2020:8857385.
13.
go back to reference Pigott J, et al. Systematic review and meta-analysis of clinical effectiveness of self-management interventions in Parkinson’s. 2021.CrossRef Pigott J, et al. Systematic review and meta-analysis of clinical effectiveness of self-management interventions in Parkinson’s. 2021.CrossRef
14.
go back to reference Shah R, et al. People with Parkinson’s perspectives and experiences of self-management: qualitative findings from a UK study. PLoS One. 2022;17(9):e0273428.CrossRefPubMedPubMedCentral Shah R, et al. People with Parkinson’s perspectives and experiences of self-management: qualitative findings from a UK study. PLoS One. 2022;17(9):e0273428.CrossRefPubMedPubMedCentral
16.
go back to reference Flemming K. The knowledge base for evidence-based nursing: a role for mixed methods research? Adv Nurs Sci. 2007;30(1):41–51.CrossRef Flemming K. The knowledge base for evidence-based nursing: a role for mixed methods research? Adv Nurs Sci. 2007;30(1):41–51.CrossRef
17.
go back to reference Candy B, et al. Using qualitative evidence on patients’ views to help understand variation in effectiveness of complex interventions: a qualitative comparative analysis. Trials. 2013;14(1):1–10.CrossRef Candy B, et al. Using qualitative evidence on patients’ views to help understand variation in effectiveness of complex interventions: a qualitative comparative analysis. Trials. 2013;14(1):1–10.CrossRef
18.
go back to reference Davies N, et al. Designing and developing a co-produced theoretical and evidence-based online support for family caregivers of people with dementia at the end of life. BMC Palliat Care. 2019;18(1):1–16.CrossRef Davies N, et al. Designing and developing a co-produced theoretical and evidence-based online support for family caregivers of people with dementia at the end of life. BMC Palliat Care. 2019;18(1):1–16.CrossRef
19.
go back to reference Davies N, et al. A decision aid to support family carers of people living with dementia towards the end of life: co-production process, outcome and reflections. Health Expect. 2021;24:1677–91.CrossRefPubMedPubMedCentral Davies N, et al. A decision aid to support family carers of people living with dementia towards the end of life: co-production process, outcome and reflections. Health Expect. 2021;24:1677–91.CrossRefPubMedPubMedCentral
20.
go back to reference Armstrong M, et al. Complementary therapy in palliative care: a synthesis of qualitative and quantitative systematic reviews. Palliat Med. 2020;34(10):1332–9.CrossRefPubMedPubMedCentral Armstrong M, et al. Complementary therapy in palliative care: a synthesis of qualitative and quantitative systematic reviews. Palliat Med. 2020;34(10):1332–9.CrossRefPubMedPubMedCentral
21.
go back to reference Hoffmann TC, et al. Better reporting of interventions: template for intervention description and replication (TIDieR) checklist and guide. BMJ. 2014;348:g1687.CrossRefPubMed Hoffmann TC, et al. Better reporting of interventions: template for intervention description and replication (TIDieR) checklist and guide. BMJ. 2014;348:g1687.CrossRefPubMed
24.
go back to reference Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77–101.CrossRef Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77–101.CrossRef
25.
go back to reference Braun V, Clarke V. Conceptual and design thinking for thematic analysis. Qualitative Psychology. 2022;9(1):3.CrossRef Braun V, Clarke V. Conceptual and design thinking for thematic analysis. Qualitative Psychology. 2022;9(1):3.CrossRef
26.
go back to reference Harden A, et al. Cochrane qualitative and implementation methods group guidance series—paper 5: methods for integrating qualitative and implementation evidence within intervention effectiveness reviews. J Clin Epidemiol. 2018;97:70–8.CrossRefPubMed Harden A, et al. Cochrane qualitative and implementation methods group guidance series—paper 5: methods for integrating qualitative and implementation evidence within intervention effectiveness reviews. J Clin Epidemiol. 2018;97:70–8.CrossRefPubMed
27.
go back to reference Pigott JS, et al. Systematic review and meta-analysis of clinical effectiveness of self-management interventions in Parkinson’s disease. BMC Geriatr. 2022;22(1):1–29.CrossRef Pigott JS, et al. Systematic review and meta-analysis of clinical effectiveness of self-management interventions in Parkinson’s disease. BMC Geriatr. 2022;22(1):1–29.CrossRef
28.
go back to reference Ong BN, et al. Behaviour change and social blinkers? The role of sociology in trials of self-management behaviour in chronic conditions. Sociol Health Illn. 2014;36(2):226–38.CrossRefPubMed Ong BN, et al. Behaviour change and social blinkers? The role of sociology in trials of self-management behaviour in chronic conditions. Sociol Health Illn. 2014;36(2):226–38.CrossRefPubMed
29.
go back to reference Educators, A.A.o.D. AADE7 self-care behaviors. Diabetes Educ. 2008;34(3):445–9. Educators, A.A.o.D. AADE7 self-care behaviors. Diabetes Educ. 2008;34(3):445–9.
30.
go back to reference Michie S, Van Stralen MM, West R. The behaviour change wheel: a new method for characterising and designing behaviour change interventions. Implement Sci. 2011;6(1):1–12.CrossRef Michie S, Van Stralen MM, West R. The behaviour change wheel: a new method for characterising and designing behaviour change interventions. Implement Sci. 2011;6(1):1–12.CrossRef
31.
go back to reference Craig P, et al. Developing and evaluating complex interventions: the new Medical Research Council guidance. 2013. Craig P, et al. Developing and evaluating complex interventions: the new Medical Research Council guidance. 2013.
32.
go back to reference Sanders EB-N, Stappers PJ. Co-creation and the new landscapes of design. Co-design. 2008;4(1):5–18. Sanders EB-N, Stappers PJ. Co-creation and the new landscapes of design. Co-design. 2008;4(1):5–18.
33.
go back to reference Advocat J, Enticott J, Vandenberg B, Hassed C, Hester J, Russell G. The effects of a mindfulness-based lifestyle program for adults with Parkinson’s disease: a mixed methods, wait list controlled randomised control study. BMC Neurol. 2016;16:1–11. Advocat J, Enticott J, Vandenberg B, Hassed C, Hester J, Russell G. The effects of a mindfulness-based lifestyle program for adults with Parkinson’s disease: a mixed methods, wait list controlled randomised control study. BMC Neurol. 2016;16:1–11.
34.
go back to reference A’Campo LEI, Wekking EM, Spliethoff-Kamminga NGA, Le Cessie S, Roos RAC. The benefits of a standardized patient education program for patients with Parkinson’s disease and their caregivers. Park Relat Disord. 2010;16:89–95. A’Campo LEI, Wekking EM, Spliethoff-Kamminga NGA, Le Cessie S, Roos RAC. The benefits of a standardized patient education program for patients with Parkinson’s disease and their caregivers. Park Relat Disord. 2010;16:89–95.
35.
go back to reference Collett J, Franssen M, Meaney A, Wade D, Izadi H, Tims M, et al. Phase II randomised controlled trial of a 6-month self-managed community exercise programme for people with Parkinson’s disease. J Neurol Neurosurg Psychiatry. 2017;88:204–11. Collett J, Franssen M, Meaney A, Wade D, Izadi H, Tims M, et al. Phase II randomised controlled trial of a 6-month self-managed community exercise programme for people with Parkinson’s disease. J Neurol Neurosurg Psychiatry. 2017;88:204–11.
36.
go back to reference Tickle-Degnen L, Ellis T, Saint-Hilaire MH, Thomas CA, Wagenaar RC. Self-management rehabilitation and health-related quality of life in Parkinson’s disease: a randomized controlled trial. Mov Disord. 2010;25:194–204. Tickle-Degnen L, Ellis T, Saint-Hilaire MH, Thomas CA, Wagenaar RC. Self-management rehabilitation and health-related quality of life in Parkinson’s disease: a randomized controlled trial. Mov Disord. 2010;25:194–204.
37.
go back to reference Dobkin RD, Mann SL, Gara MA, Interian A, Rodriguez KM, Menza M. Telephone-based cognitive behavioral therapy for depression in Parkinson disease: a randomized controlled trial. Neurology. 2020;94:E1764–73. Dobkin RD, Mann SL, Gara MA, Interian A, Rodriguez KM, Menza M. Telephone-based cognitive behavioral therapy for depression in Parkinson disease: a randomized controlled trial. Neurology. 2020;94:E1764–73.
38.
go back to reference Navarta-Sánchez MV, Ambrosio L, Portillo MC, Ursúa ME, Senosiain JM, Riverol M. Evaluation of a psychoeducational intervention compared with education in people with Parkinson’s disease and their informal caregivers: a quasi-experimental study. J Adv Nurs. 2020;76:2719–32. Navarta-Sánchez MV, Ambrosio L, Portillo MC, Ursúa ME, Senosiain JM, Riverol M. Evaluation of a psychoeducational intervention compared with education in people with Parkinson’s disease and their informal caregivers: a quasi-experimental study. J Adv Nurs. 2020;76:2719–32.
39.
go back to reference Montgomery EB, Lieberman A, Singh G, Fries JF. Patient education and health promotion can be effective in Parkinson’s disease: a randomized controlled trial. Am J Med. 1994;97:429–35. Montgomery EB, Lieberman A, Singh G, Fries JF. Patient education and health promotion can be effective in Parkinson’s disease: a randomized controlled trial. Am J Med. 1994;97:429–35.
40.
go back to reference Lakshminarayana R, Wang D, Burn D, Chaudhuri K, Hellman B, SMART-PD Investigators I. Using a smartphone based self-management platform to support medication adherence and clinical consultation in Parkinson’s disease results from the Smart-PD randomised controlled trial. Value Heal. 2016;19:A700. Lakshminarayana R, Wang D, Burn D, Chaudhuri K, Hellman B, SMART-PD Investigators I. Using a smartphone based self-management platform to support medication adherence and clinical consultation in Parkinson’s disease results from the Smart-PD randomised controlled trial. Value Heal. 2016;19:A700.
41.
go back to reference Grosset KA, Grosset DG. Effect of educational intervention on medication timing in Parkinson’s disease: a randomized controlled trial. BMC Neurol. 2007;7:1–6 Grosset KA, Grosset DG. Effect of educational intervention on medication timing in Parkinson’s disease: a randomized controlled trial. BMC Neurol. 2007;7:1–6
42.
go back to reference Lawson RA, Millar D, Brown RG, Burn DJ. Guided self-help for the management of worry in parkinson’s disease: a pilot study. J Parkinsons Dis. 2013;3:61–8. Lawson RA, Millar D, Brown RG, Burn DJ. Guided self-help for the management of worry in parkinson’s disease: a pilot study. J Parkinsons Dis. 2013;3:61–8.
43.
go back to reference Dereli EE, Yaliman A. Comparison of the effects of a physiotherapist-supervised exercise programme and a self-supervised exercise programme on quality of life in patients with Parkinson’s disease. Clin Rehabil. 2010;24:352–62. Dereli EE, Yaliman A. Comparison of the effects of a physiotherapist-supervised exercise programme and a self-supervised exercise programme on quality of life in patients with Parkinson’s disease. Clin Rehabil. 2010;24:352–62.
44.
go back to reference King LA, Wilhelm J, Chen Y, Blehm R, Nutt J, Chen Z, et al. Effects of group, individual, and home exercise in persons with Parkinson disease: a randomized clinical trial. J Neurol Phys Ther. 2015;39:204–12. King LA, Wilhelm J, Chen Y, Blehm R, Nutt J, Chen Z, et al. Effects of group, individual, and home exercise in persons with Parkinson disease: a randomized clinical trial. J Neurol Phys Ther. 2015;39:204–12.
45.
go back to reference Pearl-Kraus L. Effects of two Parkinson’s disease patient education models on disease self-management and quality of life. Diss Abstr Int Sect B Sci Eng. 2007;68:2930. Pearl-Kraus L. Effects of two Parkinson’s disease patient education models on disease self-management and quality of life. Diss Abstr Int Sect B Sci Eng. 2007;68:2930.
46.
go back to reference McNaney R, Miller N, Vines J, Olivier P, Ladha K, Jackson D, et al. The feasibility and acceptability of using a novel wrist worn cueing device to self-manage drooling problems in people with Parkinson’s disease: a pilot study. J Rehabil Assist Technol Eng. 2019;6:205566831985252. McNaney R, Miller N, Vines J, Olivier P, Ladha K, Jackson D, et al. The feasibility and acceptability of using a novel wrist worn cueing device to self-manage drooling problems in people with Parkinson’s disease: a pilot study. J Rehabil Assist Technol Eng. 2019;6:205566831985252.
47.
go back to reference van der Kolk NM, de Vries NM, Kessels RPC, Joosten H, Zwinderman AH, Post B, et al. Effectiveness of home-based and remotely supervised aerobic exercise in Parkinson’s disease: a double-blind, randomised controlled trial. Lancet Neurol. 2019;18:998–1008. van der Kolk NM, de Vries NM, Kessels RPC, Joosten H, Zwinderman AH, Post B, et al. Effectiveness of home-based and remotely supervised aerobic exercise in Parkinson’s disease: a double-blind, randomised controlled trial. Lancet Neurol. 2019;18:998–1008.
48.
go back to reference Yuen CS, Chua KK, Lau WH, Zhuang ZY, Chow HY, Li M. The effect of conduction exercise and self-acupressure in treatment of Parkinson’s disease: a pilot study. Evid-Based Complement Altern Med. 2020;7950131. Yuen CS, Chua KK, Lau WH, Zhuang ZY, Chow HY, Li M. The effect of conduction exercise and self-acupressure in treatment of Parkinson’s disease: a pilot study. Evid-Based Complement Altern Med. 2020;7950131.
49.
go back to reference Atterbury EM, Welman KE. Balance training in individuals with Parkinson’s disease: therapist-supervised vs. home-based exercise programme. Gait Posture. 2017;55(September 2016):138–44. Atterbury EM, Welman KE. Balance training in individuals with Parkinson’s disease: therapist-supervised vs. home-based exercise programme. Gait Posture. 2017;55(September 2016):138–44.
50.
go back to reference Sajatovic M, Ridgel AL, Walter EM, Tatsuoka CM, Colón-Zimmermann K, Ramsey RK, et al. A randomized trial of individual versus group-format exercise and self-management in individuals with Parkinson’s disease and comorbid depression. Patient Prefer Adherence. 2017;11:965–73. Sajatovic M, Ridgel AL, Walter EM, Tatsuoka CM, Colón-Zimmermann K, Ramsey RK, et al. A randomized trial of individual versus group-format exercise and self-management in individuals with Parkinson’s disease and comorbid depression. Patient Prefer Adherence. 2017;11:965–73.
Metadata
Title
Intervention components in the self-management of Parkinson’s: a mixed-methods synthesis of qualitative and quantitative evidence
Authors
Megan Armstrong
Kate Walters
Nathan Davies
Danielle Nimmons
Jennifer Pigott
Joy Read
Anette Schrag
Publication date
01-12-2024
Publisher
BioMed Central
Published in
BMC Health Services Research / Issue 1/2024
Electronic ISSN: 1472-6963
DOI
https://doi.org/10.1186/s12913-023-10436-4

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