title: 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 11-17 years; (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 11-17 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.
  
  
  
  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).
  
  
  
  Educating survivors and their parents on the importance and effectiveness of follow-up care might increase attendance in the longer term.
authors.affiliation: Department of Health Sciences & Health Policy, University of Lucerne, Frohburgstrasse 3, 6002, Lucerne, Switzerland.
authors.forename: Janine
authors.initials: J
authors.lastname: Vetsch
authors.affiliation: Department of Health Sciences & Health Policy, University of Lucerne, Frohburgstrasse 3, 6002, Lucerne, Switzerland.
authors.forename: Corina S
authors.initials: CS
authors.lastname: Rueegg
authors.affiliation: Department of Health Sciences & Health Policy, University of Lucerne, Frohburgstrasse 3, 6002, Lucerne, Switzerland.
authors.forename: Luzius
authors.initials: L
authors.lastname: Mader
authors.affiliation: Department of Oncology/Hematology, University Children's Hospital Zurich, Steinwiesstrasse 75, 8032, Zurich, Switzerland.
authors.forename: Eva
authors.initials: E
authors.lastname: Bergstraesser
authors.affiliation: Department of Oncology/Hematology, Children's Hospital, Cantonal Hospital Lucerne, 6000, Lucerne, Switzerland.
authors.forename: Johannes
authors.initials: J
authors.lastname: Rischewski
authors.affiliation: Institute of Social and Preventive Medicine, University of Bern, Finkenhubelweg 11, 3012, Bern, Switzerland.
authors.forename: Claudia E
authors.initials: CE
authors.lastname: Kuehni
authors.affiliation: Department of Health Sciences & Health Policy, University of Lucerne, Frohburgstrasse 3, 6002, Lucerne, Switzerland. gisela.michel@unilu.ch.|Institute of Social and Preventive Medicine, University of Bern, Finkenhubelweg 11, 3012, Bern, Switzerland. gisela.michel@unilu.ch.
authors.forename: Gisela
authors.initials: G
authors.lastname: Michel
mesh_terms: D000293:Adolescent; D000359:Aftercare / Q000379:methods*; D002648:Child; D015331:Cohort Studies; D005260:Female; D006801:Humans; D008297:Male; D009369:Neoplasms / Q000401:mortality / Q000473:pathology / Q000628:therapy*; D010290:Parents / Q000523:psychology*; D011795:Surveys and Questionnaires; D017741:Survivors / Q000706:statistics & numerical data*
keywords: Cohort study; Follow-up care; Parents of childhood cancer survivors; Pediatric oncology; Questionnaire survey; Young childhood cancer survivors