Background: Although skin disease is the fourth leading cause of global disease burden, no comprehensive review of psychosocial needs assessment tools validated for use among dermatological caregivers has been conducted to date. To address this, our aim was to perform the first step in developing a core outcome set. With this systematic review, we identified a list of domains, outcomes (caregiver reported outcomes) and outcome measurement tools validated for use with dermatological caregivers to inform evidence-based decisions and promote caregiver health outcomes within daily clinical practice. A secondary objective was to assess the adequacy of measurement properties.
Method: We conducted the review according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines (PROSPERO registration number: CRD42019159956). Electronic databases including EMBASE, PsycINFO, MEDLINE (in Ovid SP), Cochrane and CINAHL EBSCO were searched (2000-2020). Title, abstract, full-text screening and data abstraction were done in duplicate.
Results: 185 full-text articles were examined from a total of 8796 records. Following quality appraisal, 26 articles were identified. 11 assessment tools were included in this review. An overview of the adequacy of the measurement properties, study and questionnaire-specific information relevant to included tools is provided. Despite the high number of dermatology and disease-specific needs assessment tools identified, limited evidence supports the quality of their methodological and measurement properties. Few caregiver outcome measurement tools were found; the majority of tools were generally generic quality of life (QoL) tools and/or assess the patients’ quality of life. Of those tools which are validated for use among caregivers, the majority are either relevant to spouse/partner or depend on the caregiver to complete but are based on their child’s perception of the disease.
Conclusion: The development of disease-specific core outcome sets may reduce the obvious heterogeneity in outcomes and tools used in dermatological caregiver research, thereby enabling need assessment, treatment comparison and eventually facilitating guidance on management. Furthermore, this overview demonstrates a need for the use and validation of (caregiver reported) accessible, integrated, solution-focused outcome measurement tools.
Walsh, C., Leavey, G., McLaughlin, M.
Disease Category: Mental health, Skin
Disease Name: Dermatology diseases
Age Range: 0 - 100
Sex: Either
Nature of Intervention: Physical, Psychological & behavioural
- Charities
- Clinical experts
- Consumers (caregivers)
- Consumers (patients)
- Families
- Methodologists
- Patient/ support group representatives
- Policy makers
- Researchers
- Service providers
- Service users
- Systematic review of outcome measures/measurement instruments
- Systematic review of outcomes measured in trials
- Literature review
- Semi structured discussion
- Systematic review
We conducted the review according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines (PROSPERO registration number: CRD42019159956). Electronic databases including EMBASE, PsycINFO, MEDLINE (in Ovid SP), Cochrane and CINAHL EBSCO were searched (2000-2020). Title, abstract, full-text screening and data abstraction were done in duplicate.