Janine Vetsch1, Joanna E Fardell2, Claire E Wakefield3, Christina Signorelli2, Gisela Michel4, Jordana K McLoone2, Thomas Walwyn5, Heather Tapp6, Jo Truscott7, Richard J Cohn2. 1. 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. 2. 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. 3. 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. 4. University of Lucerne, Department of Health Sciences and Health Policy, Lucerne, Switzerland. 5. Department of Oncology and Haematology, Princess Margaret Hospital for Children, Subiaco, Western Australia, Australia. 6. Department of Clinical Haematology/Oncology, Women's and Children's Hospital, Adelaide, Australia. 7. Children's Haematology Oncology Centre, Christchurch Hospital, Christchurch, New Zealand.
Abstract
OBJECTIVE: This mixed-method study assessed 1) survivors' and parents' information needs; and 2) associations between unmet information needs and clinical and socio-demographic characteristics. METHODS: 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. RESULTS: 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. CONCLUSION: Unmet information needs were common for survivors and parents of CCS. PRACTICE IMPLICATIONS: Future efforts towards tailoring information on potential late effects, healthy lifestyles and follow-up care may help to address unmet information needs.
OBJECTIVE: This mixed-method study assessed 1) survivors' and parents' information needs; and 2) associations between unmet information needs and clinical and socio-demographic characteristics. METHODS: 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. RESULTS: 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. CONCLUSION: Unmet information needs were common for survivors and parents of CCS. PRACTICE IMPLICATIONS: Future efforts towards tailoring information on potential late effects, healthy lifestyles and follow-up care may help to address unmet information needs.
Authors: Christina Signorelli; Claire E Wakefield; Joanna E Fardell; Tali Foreman; Karen A Johnston; Jon Emery; Elysia Thornton-Benko; Afaf Girgis; Hanne C Lie; Richard J Cohn Journal: Oncologist Date: 2018-08-31
Authors: Rebecca E Hill; Claire E Wakefield; Richard J Cohn; Joanna E Fardell; Mary-Ellen E Brierley; Emily Kothe; Paul B Jacobsen; Kate Hetherington; Rebecca Mercieca-Bebber Journal: Oncologist Date: 2019-10-25
Authors: Rebecca E Hill; Claire E Wakefield; Richard J Cohn; Joanna E Fardell; Mary-Ellen E Brierley; Emily Kothe; Paul B Jacobsen; Kate Hetherington; Rebecca Mercieca-Bebber Journal: Oncologist Date: 2019-10-25
Authors: Beeshman S Nandakumar; Joanna E Fardell; Claire E Wakefield; Christina Signorelli; Jordana K McLoone; Jane Skeen; Ann M Maguire; Richard J Cohn Journal: Support Care Cancer Date: 2018-03-02 Impact factor: 3.603
Authors: J Vetsch; C E Wakefield; E G Robertson; T N Trahair; M K Mateos; M Grootenhuis; G M Marshall; R J Cohn; J E Fardell Journal: Qual Life Res Date: 2018-01-25 Impact factor: 4.147