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

Vetsch, Janine; Rüegg, Corina Silvia; Mader, Luzius; Bergstraesser, Eva; Rischewski, Johannes; Kuehni, Claudia E; Michel, Gisela (2016). Follow-up care of young childhood cancer survivors: attendance and parental involvement. Supportive care in cancer, 24(7), pp. 3127-3138. Springer 10.1007/s00520-016-3121-6

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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.

Item Type:

Journal Article (Original Article)


04 Faculty of Medicine > Pre-clinic Human Medicine > Institute of Social and Preventive Medicine

UniBE Contributor:

Vetsch, Janine; Rüegg, Corina Silvia; Mader, Luzius; Kühni, Claudia and Michel, Gisela


600 Technology > 610 Medicine & health
300 Social sciences, sociology & anthropology > 360 Social problems & social services






[4] Swiss National Science Foundation




Doris Kopp Heim

Date Deposited:

03 Mar 2016 09:13

Last Modified:

09 Sep 2019 17:46

Publisher DOI:


PubMed ID:


Uncontrolled Keywords:

Cohort study; Follow-up care; Parents of childhood cancer survivors; Pediatric oncology; Questionnaire survey; Young childhood cancer survivors




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