Psychosocial, social and somatic late complications and concerns of disease and treatment in adults that survived childhood cancer

Abstract

Background: Owing to medical progress, the survival rate of childhood cancer in Sweden is approximately 85 %. The risk of long-term complications is around 70-80 %. However, the knowledge about the medical history and the awareness of late complications and concerns among adult childhood cancer survivors varies within the group. Aim: To study the most prevalent psychosocial, social and somatic concerns and needs, among adults that survived childhood cancer at long term follow up clinic, in Gothenburg (LTFU). Furthermore, to describe how patients perceive the visit at the LTFU clinic. Methods: The descriptive retrospective cohort study included 322 individuals who completed the Psychosocial Survivorship Screening Tool. Data from the Psychosocial screening tool and medical journals were collected and analyzed. The interview-based study conducted through ZOOM included 15 individuals. Content analysis with an overall theme divided into categories and subcategories were used. Results: The two most common patient reported concerns were trouble remembering things and not knowing fertility status, 40.4 % each. The ten most common concerns were further analyzed concerning relation to cancer treatment and sociodemographic data. The majority experienced no or low general distress. Moderate to severe distress was reported by 22 %. In the interview study patients’ perception of the LTFU clinic were divided into three categories, knowledge, security, and perceptiveness. Patients who received the Short term written care plan (STCP) described the visit at LTFU and short-term follow-up care more detailed than those who did not. Conclusion: One of the most common concerns was Trouble remembering things, STCP may aid in enhancing the memory of the visit at the clinic and the arrangements decided at the LTFU. LTFU aids in increasing patient’s health literacy and empowerment to take responsibility over their health situation in accordance with their capacity and needs. The study emphasizes the importance of a structured follow-up care after childhood cancer.