The content validity of the Utrecht symptom diary - 4 dimensional, a qualitative study

Background/aims: Many caregivers find it difficult to talk with patients about social and spiritual needs. The Utrecht Symptom Diary - 4-Dimensional (USD-4D) is developed as a conversation tool to detect and monitor social and spiritual needs and to optimise communication about these needs. The USD-4D is feasible in daily practice, but has not been validated. The aim of this study was to assess the content validity of the USD-4D social and spiritual items from a patient perspective. Methods: A generic qualitative study was conducted using semi-structured interviews. The COnsensus-based Standards for the selection of health status Measurement INstruments (COSMIN) criteria were utilised. Content validity was operationalized as: comprehensibility, relevance and comprehensiveness. Purposeful sampling was used to recruit patients with an estimated life expectancy < 1 year who have not previously completed the USD-4D. Data were analysed by two researchers using thematic analysis. Results: 12 participants (men n = 7, age 53-87 years) were interviewed. The instructions and response options of the USD-4D were comprehensible for the majority of participants. The meaning that participants provided to each item was expressed in one theme per item: (1) retention of personal identity and autonomy, (2) resilience, (3) letting go, (4) perceived balance in one’s life and (5) death and life after death. This corresponds with the items’ intended meaning. All participants found the items relevant at some point in time. At the moment of the interview, patients might not have had any accessory care needs. All participants found the social and spiritual dimension to be comprehensively covered by the items. Conclusions: This study demonstrates that the USD-4D appears to be content valid from the patient’s perspective. The items support the patient and caregivers in identifying social and spiritual needs and in the conversation to further explore these needs. Funding: ZonMw.