How patients with testicular germ cell tumors experience the Utrecht Symptom Diary: A qualitative study to improve its clinical applicability

Late effects are health problems related to cancer or its treatment. Testicular Germ Cell Tumor (TGCT) patients are at high risk of developing late effects and face challenges in psychosocial adjustment. The TGCT-late effects Utrecht Symptom Diary (USD) is a Patient Reported Outcome Measure (PROM) for early identification and monitoring of these effects. However, TGCT patients' experiences with the USD have not been evaluated. This study explores these patients’ experiences with completing the USD during follow-up at a university hospital to improve applicability in daily care. A generic qualitative study was conducted, including 12 semi-structured interviews with TGCT patients. Demographic data were collected. A six-phase thematic analysis was used. Four main themes emerged: being confronted with the facts , becoming aware of the current situation , providing support in conversations with others, and connecting to personal circumstances . TGCT patients perceived the USD as a valuable tool for facilitating the identification, monitoring and management of late effects. However, they felt confronted by the USD in certain aspects, found it challenging to assign a rating to perceived late effects, and missed items regarding physical activity. When properly introduced and discussed, the USD seems to be a valuable tool for TGCT survivors. Becoming aware of survivors’ current situation can empower them to understand and proactively manage their symptoms. The USD can serve as a bridge for communication with professionals and loved ones as well. • Completing the Utrecht Symptom Diary (USD) was helpful as a moment of reflection • In some cases the USD was experienced as confronting • Some experienced difficulties assigning symptom ratings • Some patients used the USD to involve their loved ones in discussing difficult topics • The USD supported communication with healthcare professionals in discussing intimate topics • Items about physical fitness were perceived as missing • Overall, the USD was considered as a valuable tool for identifying, monitoring and discussing late effects