Follow-up care of young childhood cancer survivors: attendance and parental involvement

Purpose Despite recommendations, only a proportion of long-term childhood cancer survivors attend follow-up care. We aimed to (1) describe the follow-up attendance of young survivors aged 11-17 years; (2) describe the parental involvement in follow-up, and (3) investigate predictors of follow-up attendance and parental involvement. Methods As part of the Swiss Childhood Cancer Survivor Study, a follow-up questionnaire was sent to parents of childhood cancer survivors aged 11-17 years. We assessed follow-up attendance of the child, parents' involvement in follow-up, illness perception (Brief IPQ), and sociodemographic data. Clinical data was available from the Swiss Childhood Cancer Registry. Results Of 309 eligible parents, 189 responded (67 %; mean time since diagnosis 11.3 years, range 6,8-17.2) and 75 % (n = 141) reported that their child still attended follow-up. Of these, 83 % (11 117) reported >= 1 visit per year and 17 % (n 23) reported <1 visit every year. Most survivors saw pediatric oncologists (n 111; 79 % of 141), followed by endocrinologists (n 24, 17 %) and general practitioners (n 22, 16 %). Most parents (92 %) reported being involved in follow-up (n 130). In multivariable and Cox regression analyses, longer time since diagnosis (p - 0.025) and lower perceived treatment control (assessed by IPQ4: how much parents thought follow-up can help with late effects; p = 0.009) were associated with non-attendance. Parents' overall information needs was significantly associated with parental involvement in the multivariable model (p = 0.041). Conclusion Educating survivors and their parents on the importance and effectiveness of follow-up care might increase attendance in the longer term.