Parents' preferences for the organisation of long-term follow-up of childhood cancer survivors.

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Version: Author's accepted manuscript
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Serval ID
serval:BIB_58871CD2B8BB
Type
Article: article from journal or magazin.
Collection
Publications
Institution
Title
Parents' preferences for the organisation of long-term follow-up of childhood cancer survivors.
Journal
European journal of cancer care
Author(s)
Vetsch J., Rueegg C.S., Mader L., Bergstraesser E., Diezi M., Kuehni C.E., Michel G.
Working group(s)
Swiss Paediatric Oncology Group
Contributor(s)
Ammann R., Angst R., Ansari P.M., Beck-Popovic P.M., Brazzola P., Greiner J., Grotzer M., Hengartner H., Kuehne T., Leibundgut K., Niggli F., Rischewski P.J., On der Weid N.
ISSN
1365-2354 (Electronic)
ISSN-L
0961-5423
Publication state
Published
Issued date
03/2018
Peer-reviewed
Oui
Volume
27
Number
2
Pages
e12649
Language
english
Notes
Publication types: Journal Article
Publication Status: ppublish
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.

Keywords
Europe, cancer registry, follow-up care, models of care, paediatric oncology, parents of childhood cancer survivors
Pubmed
Web of science
Create date
07/02/2017 18:20
Last modification date
20/08/2019 14:12
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