| Popis: |
Research into measuring family quality of life (QoL) has previously focused on families of patients with one specific disease. In dermatology methods include the Family Dermatology Life Quality Index (FDLQI) and the Psoriasis Family Index (PFI). We previously identified the key QoL themes which impact family members of patients with diverse medical conditions and the aim of this study was to create an outcome measure to assess this impact. Transcripts from 133 interviews with family members of patients from 26 specialties, including dermatology, were coded into themes. Any theme mentioned by >5% of participants was included as an item in the draft instrument. An expert panel of 12 clinicians, 7 nurses, 3 family members and 3 QoL experts provided feedback on the draft questionnaire including four attributes for each item: language clarity, completeness, relevance, and scaling. The expert panel gave positive feedback concerning most questionnaire items. Nine items were re-worded or merged and the response options were renamed to simplify the questionnaire. The panel's ratings of each item on a 4-point scale for the four attributes showed either “strongly agreed” or “agreed” (88%), with an ICC value of 0.98 (CI=0.97–0.99) suggesting a high correlation between the panel members’ responses. A 31-item generic family quality of life instrument, the Family Reported Outcome Measure (FROM)γ was developed. Measuring the impact of illness on family members will enable more complete assessment of the wider burden of disease and of targeted interventions. Further refinement and validation of this new family quality of life measure is underway. 31 items of FROMγ included 23 of the dermatology specific items identified in the generation of the Family Dermatology Life Quality Index. This suggests that the FROMγ will be useful in comparing dermatology data to that of other diseases. |
