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


Vetsch, J; Rueegg, C S; Mader, L; Bergstraesser, E; Diezi, M; Kuehni, C E; Michel, G; Swiss Paediatric Oncology Group (2018). Parents' preferences for the organisation of long-term follow-up of childhood cancer survivors. European Journal of Cancer Care, 27(2):e12649.

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.

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.

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Additional indexing

Item Type:Journal Article, refereed, original work
Communities & Collections:04 Faculty of Medicine > University Children's Hospital Zurich > Medical Clinic
Dewey Decimal Classification:610 Medicine & health
Language:English
Date:March 2018
Deposited On:30 Jan 2019 13:09
Last Modified:30 Jan 2019 13:09
Publisher:Wiley-Blackwell Publishing, Inc.
ISSN:0961-5423
Additional Information:This is the peer reviewed version of the following article: Vetsch J, Rueegg CS, Mader L, et al. Parents' preferences for the organisation of long-term follow-up of childhood cancer survivors. Eur J Cancer Care. 2017, e12649, which has been published in final form at https://doi.org/10.1111/ecc.12649. This article may be used for non-commercial purposes in accordance with Wiley Terms and Conditions for Self-Archiving.
OA Status:Green
Free access at:PubMed ID. An embargo period may apply.
Publisher DOI:https://doi.org/10.1111/ecc.12649
PubMed ID:28134478

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