"Forewarned and forearmed": Long-term childhood cancer survivors' and parents' information needs and implications for survivorship models of care.
This mixed-method study assessed 1) survivors' and parents' information needs; and 2) associations between unmet information needs and clinical and socio-demographic characteristics.



Stage 1: CCS and parents of CCS, >5years post-diagnosis completed a questionnaire on information needs, overall health and perceived risk. Predictors for unmet information needs were assessed by multivariable regression. Stage 2: participants were interviewed in-depth on these topics.



Questionnaires were completed by 485 participants comprising 322 survivors (mean age: 26.7years, SD=7.9; time since diagnosis: 19.7years, SD=8.8) and 163 parents (child age: 12.9years, SD=2.4; time since diagnosis: 9.7years, SD=2.3), and complemented by 70 interviews. Survivors reported unmet information needs about late effects (57.5%) and parents for fertility issues (62.5%). Survivors had more unmet needs for medical information whereas parents had significantly more regarding sexual issues and lifestyle. Being a parent (p=0.001), dissatisfaction with follow-up care (p=0.003), lower overall health (p=0.014), higher perceived risk of late effects (p<0.001), and greater anxiety/depression (p<0.001) were significantly associated with more unmet needs.



Unmet information needs were common for survivors and parents of CCS.



Future efforts towards tailoring information on potential late effects, healthy lifestyles and follow-up care may help to address unmet information needs.
University of Lucerne, Department of Health Sciences and Health Policy, Lucerne, Switzerland; Discipline of Paediatrics, School of Women's and Children's Health, UNSW Medicine, University of New South Wales, Kensington, NSW, 2031, Australia; Kids Cancer Centre, Sydney Children's Hospital, Randwick, NSW, 2031, Australia.
Janine
J
Vetsch
Discipline of Paediatrics, School of Women's and Children's Health, UNSW Medicine, University of New South Wales, Kensington, NSW, 2031, Australia; Kids Cancer Centre, Sydney Children's Hospital, Randwick, NSW, 2031, Australia.
Joanna E
JE
Fardell
Discipline of Paediatrics, School of Women's and Children's Health, UNSW Medicine, University of New South Wales, Kensington, NSW, 2031, Australia; Kids Cancer Centre, Sydney Children's Hospital, Randwick, NSW, 2031, Australia. Electronic address: c.wakefield@unsw.edu.au.
Claire E
CE
Wakefield
Discipline of Paediatrics, School of Women's and Children's Health, UNSW Medicine, University of New South Wales, Kensington, NSW, 2031, Australia; Kids Cancer Centre, Sydney Children's Hospital, Randwick, NSW, 2031, Australia.
Christina
C
Signorelli
University of Lucerne, Department of Health Sciences and Health Policy, Lucerne, Switzerland.
Gisela
G
Michel
Discipline of Paediatrics, School of Women's and Children's Health, UNSW Medicine, University of New South Wales, Kensington, NSW, 2031, Australia; Kids Cancer Centre, Sydney Children's Hospital, Randwick, NSW, 2031, Australia.
Jordana K
JK
McLoone
Department of Oncology and Haematology, Princess Margaret Hospital for Children, Subiaco, Western Australia, Australia.
Thomas
T
Walwyn
Department of Clinical Haematology/Oncology, Women's and Children's Hospital, Adelaide, Australia.
Heather
H
Tapp
Children's Haematology Oncology Centre, Christchurch Hospital, Christchurch, New Zealand.
Jo
J
Truscott
Discipline of Paediatrics, School of Women's and Children's Health, UNSW Medicine, University of New South Wales, Kensington, NSW, 2031, Australia; Kids Cancer Centre, Sydney Children's Hospital, Randwick, NSW, 2031, Australia.
Richard J
RJ
Cohn
D000328:Adult; D000073116:Cancer Survivors / Q000523:psychology*; D003430:Cross-Sectional Studies; D003695:Delivery of Health Care; D004644:Emotions; D005260:Female; D006301:Health Services Needs and Demand; D006801:Humans; D007255:Information Services / Q000592:standards / Q000706:statistics & numerical data*; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment; D009369:Neoplasms / Q000523:psychology* / Q000628:therapy; D010290:Parents / Q000193:education* / Q000523:psychology*; D011788:Quality of Life; D000073859:Survivorship
(4–6): childhood cancer survivors; Information needs; Mixed-method study; Paediatric oncology; Parents