Previously submitted to: Journal of Medical Internet Research (no longer under consideration since Nov 26, 2021)
Date Submitted: Oct 11, 2021
Open Peer Review Period: Oct 8, 2021 - Nov 26, 2021
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Internet-facilitated interventions for informal caregivers of patients with neurodegenerative disorders: systematic review and meta-analysis
ABSTRACT
Background:
Community-based, informal caregivers of neurodegenerative disorder (ND) patients are particularly vulnerable to negative psychological outcomes. Preexisting interventions are often delivered using a face-to-face format, yet the logistics, demands and intensity of care-provision render them inaccessible. Using internet-facilitated delivery presents a solution to ensure caregivers can access support. However, previous reviews exploring internet-facilitated interventions have overlooked caregivers of rarer NDs such as Parkinson and Huntington disease.
Objective:
This systematic review explored the therapeutic approaches, theoretical bases, content and design features common across internet-facilitated interventions. We also assessed the effectiveness of interventions in improving informal caregivers’ outcomes, when compared to standard care alone or other active comparators.
Methods:
Searches of seven databases, including Web of Science, PubMed Central and MEDLINE, incorporated papers published in English from January 1, 1999 to May 31, 2021. We included randomized controlled trials (RCTs) and pre-post evaluative studies, which reported quantitative caregiver-derived psychological outcomes for at least one time point post-intervention. Study-eligibility was restricted to those involving community-based, unpaid adult informal caregivers of ND patients and interventions where at least 50% was internet-facilitated. Data extraction encompassed interventions’ features, approaches, theoretical bases and modes of delivery. Risk of bias was assessed using the Integrated quality Criteria for the Review Of Multiple Study designs (ICROMS) framework. Meta-analyses were calculated with Standardised mean differences (SMD) and 95% confidence intervals using the inverse variance method of Hedges g, pooled post-intervention measures from at least two RCTs, to assess effectiveness. Quality of evidence was assessed using the Grading of Recommendations, Assessment, Development and Evaluations framework (GRADE).
Results:
Searches generated 51 studies, involving 48 individual interventions, with 3180 participants. Only three studies involved caregivers supporting an individual diagnosed with a rarer ND. Overall, interventions lasted from 4 weeks to 12 months in duration; usage was either prescribed or determined by participants. Of 16 RCTs reporting post-intervention data appropriate for meta-analyses, internet-delivered interventions were superior in improving sense of mastery (7 RCTs; n=400; SMD 1.17, 95% CI 0.1 to 2.24; p=0.03; I2=96%) and reducing anxiety (4 RCTs; n=279; SMD -1.29, 95% CI -1.56 to -1.01; p< 0.01; I2=95%), compared to all comparators at post-intervention. Findings were equivocal for caregivers’ quality of life, burden and other outcomes. Analyses using limited burden and self-efficacy outcomes six-month follow-up data were also non-significant compared to all comparators. GRADE assessments rated evidence quality as ‘very low for most analyses. High heterogeneity reflected the multifarious combinations of approaches and modes of delivery, precluding assessment of the most efficacious intervention features.
Conclusions:
To enhance and expand the evidence-base of internet-delivered interventions targeting informal ND caregivers, more rigorous studies with longer follow-ups across outcomes, involving NDs other than dementia, are imperative.
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