2019
DOI: 10.1136/bmjspcare-2019-002001
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Childhood cancer survivorship: barriers and preferences

Abstract: ObjectiveMany 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.MethodsWe 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.R… Show more

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Cited by 21 publications
(41 citation statements)
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“…Our study did, however, capture survivors with limited access to care, for example those living remotely and those who had moved interstate since being treated at Sydney Children's Hospital (28%). Given the similarities in globally reported barriers to accessing survivorship care, 11,31 Re-engage may be implemented in other international settings, with some modifications to suit local resources and practices. Further research investigating the effect of engagement in the healthcare system (eg, with their oncologist or GP) on survivors' satisfaction with care would be valuable.…”
Section: Strengths and Limitationsmentioning
confidence: 99%
“…Our study did, however, capture survivors with limited access to care, for example those living remotely and those who had moved interstate since being treated at Sydney Children's Hospital (28%). Given the similarities in globally reported barriers to accessing survivorship care, 11,31 Re-engage may be implemented in other international settings, with some modifications to suit local resources and practices. Further research investigating the effect of engagement in the healthcare system (eg, with their oncologist or GP) on survivors' satisfaction with care would be valuable.…”
Section: Strengths and Limitationsmentioning
confidence: 99%
“…In Australia, cancer survivors in the AYA age range are typically managed either by ‘long-term’ follow-up clinics based within pediatric (children’s) hospitals for long-term survivors (beyond five years post-diagnosis) [ 27 , 29 ], or through the survivorship clinics of the national network of Youth Cancer Services [ 30 ]. The Youth Cancer Services provide survivorship care tailored to AYAs diagnosed between the ages of 15 and 25 years, across pediatric hospitals (for AYAs diagnosed between 15 and 17 years old) and adult hospitals (for AYAs diagnosed at 18 years and older) [ 30 ].…”
Section: Introductionmentioning
confidence: 99%
“…The Youth Cancer Services provide survivorship care tailored to AYAs diagnosed between the ages of 15 and 25 years, across pediatric hospitals (for AYAs diagnosed between 15 and 17 years old) and adult hospitals (for AYAs diagnosed at 18 years and older) [ 30 ]. The positive, age-appropriate communication and support experiences that these services can facilitate appear to lead to improved quality of life [ 21 , 24 , 31 ] and may foster greater engagement into long-term cancer survivorship than traditional, medically-driven models of care by accounting for the particular psychosocial needs of AYAs [ 27 , 29 , 32 , 33 , 34 , 35 ].…”
Section: Introductionmentioning
confidence: 99%
“…13 This article reports on our team's novel approach to recruiting childhood cancer survivors to the Australian and New Zealand Children's Haematology Oncology Group (ANZCHOG) Survivorship Study, a binational survey study. 14,15 We used a four-arm randomized controlled trial to assess whether adding a video invitation (stored on a computer "memory stick," ie, USB) within our study invitation package would impact our study participation rate. The four groups received: a written study invitation only (Group 1, the control), or a written invitation plus a USB containing a video invitation presented by a childhood cancer survivor (Group 2), a pediatric oncologist (Group 3) or a researcher (Group 4).…”
Section: Introductionmentioning
confidence: 99%
“…This article reports on our team's novel approach to recruiting childhood cancer survivors to the Australian and New Zealand Children's Haematology Oncology Group (ANZCHOG) Survivorship Study, a binational survey study 14,15 . We used a four‐arm randomized controlled trial to assess whether adding a video invitation (stored on a computer “memory stick,” ie, USB) within our study invitation package would impact our study participation rate.…”
Section: Introductionmentioning
confidence: 99%