The content validity of social and spiritual items of the Utrecht Symptom Diary – 4 Dimensional for patients in palliative care: A qualitative study

Background: Palliative care aims to optimise the quality of life of patients with life-threatening illnesses by diminishing multidimensional suffering. The social and spiritual dimensions still seem underrepresented in Dutch palliative care, as caregivers lack words to describe and discuss the patients’ associated needs. The ars moriendi model centres on five tension fields that may be pivotal in one’s process of dying. They should facilitate communication about needs in the social and spiritual dimension. Recently, these tension fields were integrated into the Utrecht Symptom Diary – 4 Dimensional (USD-4D), a Patient-Reported Outcome Measure (PROM). Aim: This study’s aim was to assess the content validity of social and spiritual items of the USD-4D, in accordance with the Consensus-Based Standards for Selection of Health Measurement Instruments (COSMIN) methodology. Method: A generic qualitative study was conducted using semi-structured interviews from February 2019 to July 2019. Data were analysed independently by two researchers using thematic analysis. Results: A total of 12 participants (male N = 7, age range 53–87 years) possessing a life-limiting illness participated. The instructions and response options were clear for almost all participants. The meaning that the participants provided to the items was expressed in themes: maintaining personal identity and autonomy, resilience, letting go, perceived balance in one’s life, and death and life after death. This corresponded with the items’ intended meaning. Most of the participants found the items relevant and comprehensive. Conclusion: The USD-4D constitutes a content-valid PROM from the patient’s perspective. The items seem to aid in exploring needs from the social and spiritual dimension and appears supportive in the conversation to further explore these needs. Recommendations: Further research is required for the USD-4D’s successful integration in Dutch palliative care.