2020 Volume 57 Issue 2 Pages 142-149
To elucidate the needs of childhood cancer survivors (CCSs) and to determine the support they require, we conducted a retrospective analysis of CCSs who visited the dedicated outpatient department for long-term follow-up (LTFU) at our institution. Details about consultations between July 2014 and March 2017 were collected from the medical records of 216 consecutive patients. Qualitative and inductive analyses of the collected data were conducted. The collected information included 454 patient concerns, which were divided into the following five main categories: (i) concerns about physical symptoms associated with past treatments, (ii) current psychosocial problems, (iii) anxiety about possible future symptoms and events, (iv) requests for required information and support, and (v) difficulties not associated with childhood cancer. Most of the consultations were related to physical symptoms that affected daily life such as pain and fatigue. Regarding psychosocial aspects, there were numerous consultations about emotional instability and disease notification. The following five principal needs for LTFU were identified: (i) appropriate therapeutic intervention for physical symptoms, (ii) longitudinal support for psychosocial problems by co-medical staff, (iii) reduction of anxiety about the future, (iv) predictive support according to developmental stages and life events, and (v) role of a general pediatrician. Our study indicates the importance of screening for CCSs with predictable problems and requiring longitudinal support, as patient needs vary depending on the underlying disease, treatments, age, and social backgrounds.
