Journal Article

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

Mader, Luzius, Rueegg, Corina S., Michel, Gisela, Kuehni, Claudia E., Bergstraesser, Eva, Vetsch, Janine, Rischewski, Johannes

2016

Overview

ABSTRACT 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 % ( 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). Conclusion Educating survivors and their parents on the importance and effectiveness of follow-up care might increase attendance in the longer term.

• Publisher: Springer Berlin Heidelberg,Springer,Springer Nature B.V
• Subject: Adolescent / Aftercare - methods / Analysis / Attendance / Cancer / Cancer survivors / Child / Childhood / Childhood cancer / Children / Children & youth / Cohort Studies / Family physicians / Female / Humans / Information needs / Locus of control / Male / Medical diagnosis / Medicine / Medicine & Public Health / Neoplasms - mortality / Neoplasms - pathology / Neoplasms - therapy / Nursing / Nursing Research / Oncologists / Oncology / Original Article / Pain Medicine / Parent participation / Parent-child relations / Parenting / Parents & parenting / Parents - psychology / Pediatrics / Perceived control / Physicians / Rehabilitation Medicine / Sociodemographics / Surveys / Surveys and Questionnaires / Survivor / Survivors - statistics & numerical data