Systematic review of psychosocial needs assessment tools for caregivers of paediatric patients with dermatological conditions

Abstract

ObjectiveTo identify validated dermatology-specific and disease-specific psychosocial needs assessment tools for caregivers of paediatric patients with dermatological conditions. A secondary objective was to assess the adequacy of their measurement properties.DesignSystematic review.Data sourcesEMBASE, PsycINFO, MEDLINE (in Ovid SP), Cochrane, Cumulative Index to Nursing and Allied Health EBSCO, U Search and Web of Science were searched (2000–5 October 2021). Grey literature, bibliographies, online databases of QoL tools and several trial registers were searched (2000–5 Oct 2021).Eligibility criteriaEligible studies involved adult caregivers caring for a child (no age limit) with any form of any skin condition. Predetermined exclusion criteria, as per protocol, were applied to the search results.Data abstraction and synthesisTitle, abstract, full-text screening and data abstraction (standardised forms) were done independently in duplicate. Both’s predefined methodological criteria assessed risk of bias. Narrative synthesis was used to present the findings.Results187 full-text articles were examined from a total of 8979 records. Most tools were generic QoL tools, relevant to spouse/partner or based on their child’s perception of the disease or assessed patients’ quality of life. Following quality appraisal, 26 articles were identified, and 11 tools (1 dermatology-specific and 10 disease-specific) were included. Information outcome domains were provided for each tool (study specific, questionnaire specific, adequacy of measurement properties and risk of bias). No literature was found pertaining to the use of these tools within healthcare settings and/or as e-tools.DiscussionWith limited evidence supporting the quality of their methodological and measurement properties, this review will inform future dermatological Core Outcome Set development and improve evidence-based clinical decisions. Increasing demand on limited healthcare resources justifies the codevelopment of an accessible solution-focused psychosocial needs assessment e-tool to promote caregiver health outcomes.PROSPERO registration numberPROSPERO (CRD42019159956).

Novel mixed-method, inclusive protocol involving global key stakeholders, including carers as experts, to co-develop relevant Caregiver-Reported Outcome Domains (CRODs) in skin disease

“…Although COS development should be concerned about raising the standards of measurement tools,45 recent systematic reviews consistently highlight that most existing tools do not meet modern standards in terms of content, face and structural validity 23. The US Food and Drug Administration46 and OMERACT30 reinforce that content validity should be demonstrated before any measurement tool is recommended for a core domain.…”

“…With no reference standards existing for conducting Delphi methods and for consensus definitions,53 this protocol uses the consensus definition based on previous findings from OMERACT meetings30 and adopts the use of a 4-point Likert scale. To ensure that no group of experts could steer evidence towards any fixed preconceptions, established consensus methods will be used 23. This will include the maintenance of response anonymity among diverse international stakeholder representation, inclusive of affected patients, caregivers, consultant dermatologists, nurses, health policy advisors, support group representatives and academics recruited from Europe, the USA and India.…”

“…A list of published ichthyosis-specific domains were developed for presentation in Study 3. Study 1 has now been completed 23…”

“…Phase 1: identification of potential outcomes and domains considered important by both expert groups (COS-STAD 8) Study 1: systematic literature review to identify outcome domains in psychosocial measurement tools validated for use with dermatological caregivers. 23 Objective To review available and useful psychosocial needs assessment tools to identify relevant items and domains to Open access promote caregiver health outcomes and evidence-based decisions within clinical practice and service delivery. Depending on similarities among included articles, we aimed to additionally provide an overview of methodological analysis of the included instruments using Both et al's criteria.…”

“…Given that Cochrane editors emphasise that the availability of COS would strengthen the evidence base for healthcare decision-making by using outcomes relevant to all stakeholders and improve the comparability of interventions, [19][20][21][22] it is crucial to optimise the development of a candidate list of meaningful and relevant outcome domains for ichthyosis. Furthermore, the results of recent systematic reviews indicate that the validity and reliability of dermatological outcome measures are not supported with sufficient evidence, 23 leading to poor COS uptake. 15 24 To address these issues, the COMET initiative, 25 the Cochrane Skin Group-Core Outcome Set Initiative, 26 Core Outcome Set-STAndards for Developing (COS-STAD) 27 and the COnsensus-based Standards for the selection of health status Measurement INstruments (COSMIN) group 28 recommend greater family inclusion in the identification and consensus of outcome domains.…”