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


Vetsch, Janine; Rueegg, Corina S; 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):3127-3138.

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.

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.

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2 citations in Scopus®
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Additional indexing

Item Type:Journal Article, refereed, original work
Communities & Collections:04 Faculty of Medicine > University Children's Hospital Zurich > Medical Clinic
Dewey Decimal Classification:610 Medicine & health
Language:English
Date:2016
Deposited On:24 Jan 2017 09:21
Last Modified:08 Dec 2017 22:22
Publisher:Springer
ISSN:0941-4355
Publisher DOI:https://doi.org/10.1007/s00520-016-3121-6
PubMed ID:26922584

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