title: Preferences for long-term follow-up care in childhood cancer survivors.
abstract: Follow-up care is important for childhood cancer survivors to facilitate early detection and treatment of late effects. We aimed to describe preferences for different organisational aspects and models of follow-up care among Swiss childhood cancer survivors, and characteristics associated with preferences for different models. We contacted 720 survivors aged 18+ years, diagnosed with cancer after 1990 (age 0-16 years), registered in the Swiss Childhood Cancer Registry (SCCR), and Swiss resident, who previously participated in a baseline survey. They received questionnaires to assess attendance and preferences for follow-up (rated on 4-point scales, 0-3). Clinical information was available from the SCCR. Survivors (n = 314: response rate 43.6%; 47.8% still attended follow-up) rated clinical reasons for follow-up higher than supportive reasons (p < .001). They rated checking for cancer recurrence (mean = 2.78, SD = 0.53) and knowing about risks for my children most important (mean = 2.22, SD = 0.83). They preferred to attend a children's hospital (mean = 1.94, SD = 1.11), adult hospital (mean = 1.86, SD = 0.98) or general practitioner (mean = 1.86, SD = 1.01) rather than a central specialised late effects clinic (mean = 1.25, SD = 1.06, p < .001), and be seen by paediatric (mean = 2.24, SD = 0.72) or medical oncologist (mean = 2.17, SD = 0.69). Survivors preferred decentralised clinic-based follow-up, rather than one central specialised late effects clinic. Survivors' preferences should be considered to ensure future attendance.
authors.affiliation: Department of Health Sciences & Health Policy, University of Lucerne, Lucerne, Switzerland. gisela.michel@unilu.ch.|Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland. gisela.michel@unilu.ch.
authors.forename: G
authors.initials: G
authors.lastname: Michel
authors.affiliation: Department of Health Sciences & Health Policy, University of Lucerne, Lucerne, Switzerland.
authors.forename: M E
authors.initials: ME
authors.lastname: Gianinazzi
authors.affiliation: Department of Psychology, University of Sheffield, Sheffield, UK.
authors.forename: C
authors.initials: C
authors.lastname: Eiser
authors.affiliation: Department of Paediatric Oncology, University Children's Hospital, Zurich, Switzerland.
authors.forename: E
authors.initials: E
authors.lastname: Bergstraesser
authors.affiliation: Department of Health Sciences & Health Policy, University of Lucerne, Lucerne, Switzerland.
authors.forename: J
authors.initials: J
authors.lastname: Vetsch
authors.affiliation: University Children's Hospital Beider Basel (UKBB), Basel, Switzerland.
authors.forename: N
authors.initials: N
authors.lastname: von der Weid
authors.affiliation: Institute of Social and Preventive Medicine, University of Bern, Bern, Switzerland.
authors.forename: C E
authors.initials: CE
authors.lastname: Kuehni
mesh_terms: D000328:Adult; D000069586:Adult Survivors of Child Adverse Events / Q000523:psychology*; D000359:Aftercare; D000368:Aged; D002648:Child; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D009369:Neoplasms / Q000523:psychology* / Q000628:therapy; D057240:Patient Preference; D011369:Professional-Patient Relations; D013315:Stress, Psychological / Q000209:etiology; D011795:Surveys and Questionnaires
keywords: aftercare; oncology; organisation; patient preference; survivors