A systematic review of psychosocial needs assessment tools for dermatological caregivers of children

Abstract

Even though skin disease is one of the leading causes of global disease burden, identifying and implementing appropriate dermatology assessment tools remains a challenge with key gaps in the care coordination evidence-base. Existing international policy and guidance recommend that informal dermatological caregivers of children should have access to regular and appropriate assessment of their psychosocial needs. Healthcare professionals need to be able to access relevant, high quality, accessible and up to date information on available, validated and useful needs assessment tools in order to triage, identify and support the unmet psychosocial needs of these caregivers. This comprehensive systematic review aims to assess the availability and usefulness of skin disorder psychosocial needs assessment tools validated for use among dermatological family caregivers. Electronic databases including EMBASE, PsycINFO, MEDLINE (in Ovid SP), Cochrane and CINAHL EBSCO were searched (2000-2019). To enhance the sensitivity, forward searches were conducted in U Search, Web of Science and several trial registers. Title, abstract and full screening, and data abstraction were done in duplicate. 185 full-text articles were examined from a total of 8796 records and 11 assessment tools were included in this review. In contrast to the high number of dermatology and disease-specific needs assessment tools identified, limited evidence supports the quality of their methodological and measurement properties. The tools generally quantified patient outcome measures or were generic quality of life (QoL) tools, which are not recommended by Cochrane Skin Centre of Evidence Based Dermatology. Although many of the reviewed tools quantify similar constructs, none directly measured caregivers’ need in terms of both problems and supports, but instead utilized measures of other constructs as a proxy for caregivers’ need. No dermatology-specific or disease-specific caregiver psychosocial needs assessment e-tool exists. Recommendations for the use of disease-specific caregiver assessment tools for healthcare settings must be made with caution because of their limitations in terms of methodology and practical usefulness. With an ever-increasing emphasis on e-health and existing demand on limited and valuable healthcare resources, dermatological caregiver needs assessment tools need to be reconsidered within the construct of ‘prevention is better than cure’ whereby needs are directly assessed on two levels; problems and interventions. This review highlights the need to develop an accessible integrated solution-focused model of dermatological caregiver assessment which provides healthcare professionals with an opportunity to triage and/or identify unmet care needs and facilitates dermatological caregivers to both self-report their needs and choose their own solutions.