Childhood cancer survivorship: barriers and preferences

Christina Signorelli; Claire Wakefield; Jordana K McLoone; Joanna Fardell; Janelle M Jones; Kate H Turpin; Jon Emery; Gisela Michel; Peter Downie; Jane E Skeen; Richard Cohn; ANZCHOG Survivorship Study Group; members of the ANZCHOG Survivorship Study Group

doi:10.1136/bmjspcare-2019-002001

Childhood cancer survivorship: barriers and preferences

BMJ Support Palliat Care. 2022 Nov;12(e5):e687-e695. doi: 10.1136/bmjspcare-2019-002001. Epub 2019 Nov 11.

Authors

Christina Signorelli^{1

2}, Claire Wakefield^{3

2}, Jordana K McLoone^{3

2}, Joanna Fardell^{3

2}, Janelle M Jones^{4

5}, Kate H Turpin⁶, Jon Emery⁷, Gisela Michel⁸, Peter Downie⁹, Jane E Skeen¹⁰, Richard Cohn^{3

2}; ANZCHOG Survivorship Study Group; members of the ANZCHOG Survivorship Study Group

Affiliations

¹ Kids Cancer Centre, Sydney Children's Hospital Randwick, Randwick, New South Wales, Australia c.signorelli@unsw.edu.au.
² School of Women's and Children's Health, University of New South Wales, Sydney, NSW, Australia.
³ Kids Cancer Centre, Sydney Children's Hospital Randwick, Randwick, New South Wales, Australia.
⁴ Hudson Institute of Medical Research, Melbourne, Victoria, Australia.
⁵ Australian and New Zealand Children's Haematology/Oncology Group, Melbourne, Victoria, Australia.
⁶ Paediatric Haematology/Oncology, Women's and Children's Hospital Adelaide, North Adelaide, South Australia, Australia.
⁷ Centre for Cancer Research, University of Melbourne, Victorian Comprehensive Cancer Centre, Melbourne, Victoria, Australia.
⁸ Department of Health Sciences and Health Policy, University of Lucerne, Lucerne, Switzerland.
⁹ Children's Cancer Centre, Royal Children's Hospital Melbourne, Parkville, Victoria, Australia.
¹⁰ Starship Blood and Cancer Centre, Starship Children's Hospital, Newmarket, Auckland, New Zealand.

PMID: 31712388
DOI: 10.1136/bmjspcare-2019-002001

Abstract

Objective: Many survivors are disengaged from follow-up, mandating alternative models of survivorship-focused care for late effects surveillance. We explored survivors' barriers to accessing, and preferences for survivorship care.

Methods: We invited Australian and New Zealand survivors of childhood cancer from three age groups: <16 years (represented by parents), 16-25 years (adolescent and young adults (AYAs)) and >25 years ('older survivors'). Participants completed questionnaires and optional interviews.

Results: 633 survivors/parents completed questionnaires: 187 parents of young survivors (mean age: 12.4 years), 251 AYAs (mean age: 20.6 years) and 195 older survivors (mean age: 32.5 years). Quantitative data were complemented by 151 in-depth interviews. Most participants, across all age groups, preferred specialised follow-up (ie, involving oncologists, nurses or a multidisciplinary team; 86%-97%). Many (36%-58%) were unwilling to receive community-based follow-up. More parents (75%) than AYAs (58%) and older survivors (30%) were engaged in specialised follow-up. While follow-up engagement was significantly lower in older survivors, survivors' prevalence of late effects increased. Of those attending a follow-up clinic, 34%-56% were satisfied with their care, compared with 14%-15% of those not receiving cancer-focused care (p<0.001). Commonly reported barriers included lack of awareness about follow-up availability (67%), followed by logistical (65%), care-related beliefs (59%) and financial reasons (57%). Older survivors (p<0.001), living outside major cities (p=0.008), and who were further from diagnosis (p=0.014) reported a higher number of barriers.

Conclusions: Understanding patient-reported barriers, and tailoring care to survivors' follow-up preferences, may improve engagement with care and ensure that the survivorship needs of this population are met.

Keywords: barriers; long-term follow-up; models of care; paediatric oncology; patient preferences; survivorship.

MeSH terms

Adolescent
Adult
Aftercare
Aged
Australia
Cancer Survivors*
Child
Humans
Neoplasms* / therapy
Survivorship
Young Adult