title: Preferences for the organization of long-term follow-up in adolescent and young adult cancer survivors.
abstract: As survival rates of adolescent and young adult (AYA) cancer patients increase, a growing number of AYA cancer survivors need follow-up care. However, there is little research on their preferences for follow-up care. We aimed to (1) describe AYA cancer survivors' preferences for the organization and content of follow-up care, (2) describe their preferences for different models of follow-up, and (3) investigate clinical and sociodemographic characteristics associated with preferences for the different models.
  
  
  
  AYA cancer survivors (diagnosed with cancer at age 16-25 years; ≥5 years after diagnosis) were identified through the Cancer Registry Zurich and Zug. Survivors completed a questionnaire on follow-up attendance, preferences for organizational aspects of follow-up care (what is important during follow-up, what should be included during appointments, what specialists should be involved, location), models of follow-up (telephone/questionnaire, general practitioner (GP), pediatric oncologist, medical oncologist, multidisciplinary team), and sociodemographic characteristics. Information on tumor and treatment was available through the Cancer Registry Zurich and Zug.
  
  
  
  Of 389 contacted survivors, 160 (41.1 %) participated and 92 (57.5 %) reported still attending follow-up. Medical aspects of follow-up care were more important than general aspects (p < 0.001). Among different organizational models, follow-up by a medical oncologist was rated higher than all other models (p = 0.002). Non-attenders of follow-up rated GP-led follow-up significantly higher than attenders (p = 0.001).
  
  
  
  Swiss AYA cancer survivors valued medical content of follow-up and showed a preference for medical oncologist-led follow-up. Implementation of different models of follow-up care might improve accessibility and attendance among AYA cancer survivors.
authors.affiliation: Department of Health Sciences & Health Policy, University of Lucerne, Frohburgstrasse 3, 6002, Lucerne, Switzerland.
authors.forename: Salome
authors.initials: S
authors.lastname: Christen
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: Luzius
authors.initials: L
authors.lastname: Mader
authors.affiliation: Cancer Registry Zurich and Zug, Institute of Surgical Pathology, University Hospital Zurich and Epidemiology, Biostatistics and Prevention Institute, University Zurich, Vogelsangstrasse 10, 8091, Zurich, Switzerland.
authors.forename: Silvia
authors.initials: S
authors.lastname: Dehler
authors.affiliation: Cancer Registry Zurich and Zug, Institute of Surgical Pathology, University Hospital Zurich and Epidemiology, Biostatistics and Prevention Institute, University Zurich, Vogelsangstrasse 10, 8091, Zurich, Switzerland.
authors.forename: Dimitri
authors.initials: D
authors.lastname: Korol
authors.affiliation: Institute of Social and Preventive Medicine, University of Bern, Finkenhubelweg 11, 3012, Bern, Switzerland.
authors.forename: Claudia
authors.initials: C
authors.lastname: Kuehni
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. 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.identifier: 0000-0002-9589-0928
authors.initials: G
authors.lastname: Michel
mesh_terms: D000293:Adolescent; D000328:Adult; D003266:Continuity of Patient Care / Q000458:organization & administration*; D003695:Delivery of Health Care; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D008297:Male; D009369:Neoplasms / Q000401:mortality / Q000523:psychology / Q000628:therapy*; D010347:Patient Care Planning / Q000458:organization & administration*; D057240:Patient Preference; D011795:Surveys and Questionnaires; D015996:Survival Rate; D017741:Survivors; D055815:Young Adult
keywords: AYA; Adolescent and young adult cancer survivors; Long-term follow-up; Models of care; Preferences