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

Abstract

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 11-17years; (2) describe the parental involvement in follow-up, and (3) investigate predictors of follow-up attendance and parental involvement. As part of the Swiss Childhood Cancer Survivor Study, a follow-up questionnaire was sent to parents of childhood cancer survivors aged 11-17years. 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. Of 309 eligible parents, 189 responded (67%; mean time since diagnosis 11.3years, range 6.8-17.2) and 75% (n=141) reported that their child still attended follow-up. Of these, 83% (n=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). Educating survivors and their parents on the importance and effectiveness of follow-up care might increase attendance in the longer term.