title: Parents' preferences for the organisation of long-term follow-up of childhood cancer survivors.
abstract: Parents take an important role in follow-up of young cancer survivors. We aimed to investigate (1) parents' preferences for organisation of follow-up (including content, specialists involved and models of care), and (2) parents' and children's characteristics predicting preference for generalist vs. specialist-led follow-up. We sent a questionnaire to parents of childhood cancer survivors aged 11-17 years. We assessed on a 4-point Likert scale (1-4), parents' preferences for organisation of long-term follow-up. Proposed models were: telephone/questionnaire, general practitioner (GP) (both categorised as generalist for regression analysis); and paediatric oncologist, medical oncologist or multidisciplinary team (MDT) (categorised as specialists). Of 284 contacted parents, 189 responded (67%). Parents welcomed if visits included checking for cancer recurrence (mean = 3.89), late effects screening (mean = 3.79), taking patients seriously (mean = 3.86) and competent staff (mean = 3.85). The preferred specialists were paediatric oncologists (mean = 3.73). Parents valued the paediatric oncologist model of care (mean = 3.49) and the MDT model (mean = 3.14) highest. Parents of children not attending clinic-based follow-up (OR = 2.97, p = .009) and those visiting a generalist (OR = 4.23, p = .007) favoured the generalist-led model. Many parents preferred a clinic-based model of follow-up by paediatric oncologists or a MDT. However, parents also valued the follow-up care model according to which their child is followed up.
authors.affiliation: Department of Health Sciences & Health Policy, University of Lucerne, Lucerne, Switzerland.|Discipline of Paediatrics, School of Women's and Children's Health, UNSW Medicine, University of New South Wales, Kensington, NSW, Australia.|Kids Cancer Centre, Sydney Children's Hospital, Randwick, NSW, Australia.
authors.forename: J
authors.initials: J
authors.lastname: Vetsch
authors.affiliation: Department of Health Sciences & Health Policy, University of Lucerne, Lucerne, Switzerland.|Department of Biostatistics, Oslo Centre for Biostatistics and Epidemiology, Institute of Basic Medical Sciences, University of Oslo, Oslo, Norway.
authors.forename: C S
authors.initials: CS
authors.lastname: Rueegg
authors.affiliation: Department of Health Sciences & Health Policy, University of Lucerne, Lucerne, Switzerland.
authors.forename: L
authors.initials: L
authors.lastname: Mader
authors.affiliation: Department of Oncology/Hematology, University Children's Hospital Zurich, Zurich, Switzerland.
authors.forename: E
authors.initials: E
authors.lastname: Bergstraesser
authors.affiliation: Paediatric Hemato-Oncology Unit, Division of Clinical Pharmacology, CHUV, Lausanne, Switzerland.
authors.forename: M
authors.initials: M
authors.lastname: Diezi
authors.affiliation: Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland.
authors.forename: C E
authors.initials: CE
authors.lastname: Kuehni
authors.affiliation: Department of Health Sciences & Health Policy, University of Lucerne, Lucerne, Switzerland.|Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland.
authors.forename: G
authors.initials: G
authors.lastname: Michel
mesh_terms: D000293:Adolescent; D000328:Adult; D000359:Aftercare / Q000379:methods*; D000073116:Cancer Survivors; D002648:Child; D003266:Continuity of Patient Care / Q000458:organization & administration*; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D009369:Neoplasms / Q000628:therapy*; D010290:Parents / Q000523:psychology*; D010347:Patient Care Planning / Q000458:organization & administration*; D013038:Specialization
keywords: Europe; cancer registry; follow-up care; models of care; paediatric oncology; parents of childhood cancer survivors