Systematic review and meta-analysis of clinical effectiveness of self-management interventions in Parkinson’s disease

Abstract

Background Parkinson’s disease is a complex neurodegenerative condition with significant impact on quality of life (QoL), wellbeing and function. The objective of this review is to evaluate the clinical effectiveness of self-management interventions for people with Parkinson’s disease, taking a broad view of self-management and considering effects on QoL, wellbeing and function. Methods Systematic searches of four databases (MEDLINE, Embase, PsycINFO, Web of Science) were conducted for studies evaluating self-management interventions for people with Parkinson’s disease published up to 16th November 2020. Original quantitative studies of adults with idiopathic Parkinson’s disease were included, whilst studies of atypical Parkinsonism were excluded. Full-text articles were independently assessed by two reviewers, with data extracted by one reviewer and reliability checked by a second reviewer, then synthesised through a narrative approach and, for sufficiently similar studies, a meta-analysis of effect size was conducted (using a random-effects meta-analysis with restricted maximum likelihood method pooled estimate). Interventions were subdivided into self-management components according to PRISMS Taxonomy. Risk of bias was examined with the Cochrane Risk of Bias 2 (RoB2) tool or ROBIN-I tool as appropriate. Results Thirty-six studies were included, evaluating a diverse array of interventions and encompassing a range of study designs (RCT n = 19; non-randomised CT n = five; within subject pre- and post-intervention comparisons n = 12). A total of 2884 participants were assessed in studies across ten countries, with greatest output from North America (14 studies) and UK (six studies). Risk of bias was moderate to high for the majority of studies, mostly due to lack of participant blinding, which is not often practical for interventions of this nature. Only four studies reported statistically significant improvements in QoL, wellbeing or functional outcomes for the intervention compared to controls. These interventions were group-based self-management education and training programmes, either alone, combined with multi-disciplinary rehabilitation, or combined with Cognitive Behaviour Therapy; and a self-guided community-based exercise programme. Four of the RCTs evaluated sufficiently similar interventions and outcomes for meta-analysis: these were studies of self-management education and training programmes evaluating QoL (n = 478). Meta-analysis demonstrated no significant difference between the self-management and the control groups with a standardised mean difference (Hedges g) of − 0.17 (− 0.56, 0.21) p = 0.38. By the GRADE approach, the quality of this evidence was deemed “very low” and the effect of the intervention is therefore uncertain. Components more frequently observed in effective interventions, as per PRISMS taxonomy analysis, were: information about resources; training or rehearsing psychological strategies; social support; and lifestyle advice and support. The applicability of these findings is weakened by the ambiguous and at times overlapping nature of self-management components. Conclusion Approaches and outcomes to self-management interventions in Parkinson’s disease are heterogenous. There are insufficient high quality RCTs in this field to show effectiveness of self-management interventions in Parkinson’s disease. Whilst it is not possible to draw conclusions on specific intervention components that convey effectiveness, there are promising findings from some studies, which could be targeted in future evaluations.

Confidence College – an online education tool for neurology patients

“…While a holistic, multidisciplinary approach is desirable, a minority of patients have access to such care. Qualitative research suggests that many healthcare professionals consider self-management in Parkinson's disease as important but identify barriers such as lack of resources [8], and research in this field is currently limited [9]. Face-to-face self-management courses are available through charities and peer-support.…”

People with Parkinson’s perspectives and experiences of self-management: Qualitative findings from a UK study

“…Most research on self-management has focused on chronic conditions such as arthritis and diabetes [10]; however, there is a growing focus on Parkinson's [11,12]. Parkinson's self-management includes adherence to medication regimes, exercising, diet management, the monitoring of various symptoms, and management of environmental factors [13].…”

“…Parkinson's self-management includes adherence to medication regimes, exercising, diet management, the monitoring of various symptoms, and management of environmental factors [13]. A systematic review exploring the effectiveness of self-management interventions found mixed results due to small and poor-quality studies [11]. However, components more frequently observed in effective interventions were information about resources; training or rehearsing psychological strategies; social support; and lifestyle advice and support.…”

Measures of fidelity of delivery and engagement in self-management interventions: A systematic review of measures

“…In a systematic review of self-management interventions in people with Parkinson’s, only 4/36 studies showed a significant improvement for quality of life in the intervention arm. 7 To understand any lack of effect following a trial, a fidelity assessment is needed to determine if the intervention was delivered as planned in the protocol. This review will focus on two subcomponents of a fidelity assessment: fidelity of intervention delivery and fidelity of engagement.…”

“… 10 This ensures that when interventions are implemented, these core components are emphasised, so effects seen in trials are translated into clinical care. However, in the Walton et al 9 review of complex health behaviour change interventions, only 36% measured fidelity and engagement; the review by Pigott et al 7 found none of the included studies conducted a formal fidelity assessment, and reviewing implementation fidelity for self-management for osteoarthritis, Toomey et al 11 found very low fidelity reporting, with only 1/22 studies achieving acceptable reporting levels.…”