A Study of Childhood Cancer Survivors’ Engagement with Long-Term Follow-Up Care: ‘To attend or not to attend, that is the question’.

JENNIFER KIRTON, KATHERINE KNIGHTING, LUCY BRAY, James Hayden, Lynda Appleton, Nicki Thorp

Research output: Contribution to journalArticle

Abstract

Purpose
In the UK, there are over 40,000 childhood cancer survivors (CCS); this figure grows approximately 1,300 annually. Two-thirds are at risk of developing serious disabling or life-threatening conditions due to adverse late effects of the cancer or treatment received in childhood. Life-long, follow-up care for the surveillance and management of late effects is recommended. This study explored CCS’ views and experiences of long-term follow-up (LTFU) care within a cancer centre.

Methods
Paper questionnaires (n=113) and qualitative interviews (n=13).

Results
The majority (n=83, 80%) of CCS reported being satisfied with their LTFU care and felt that it was important to attend long-term survivorship follow-up (n=97, 86%). However, some were not well informed about their cancer treatment history, purpose for attending the clinic or the potential for late effects. Barriers associated with LTFU included; provision of information, lack of interpersonal relationships, practical and logistic challenges.

Conclusions
Barriers identified can be addressed through strategies including provision of verbal and written information and care plans to increase CCS’ knowledge of their cancer history, risk of late effects and the purpose of LTFU care, both at transition and throughout their survivorship journey; patient-centred services that enhance patient choice and flexibility of access to multiple specialities; and use of risk stratified pathways to encourage supported self-management based on cancer type, co-morbidity, and level of professional involvement required. Improving regular provision of information at critical time-points, and exploring a flexible, patient-centred delivery of LFTU care based on risk, could increase attendance and self-management in CCS.

KEYWORDS
Childhood cancer; adolescent; survivorship; long-term follow-up; late effects; health services
Original languageEnglish
Number of pages16
JournalEuropean Journal of Oncology Nursing
Publication statusAccepted/In press - 3 Feb 2020

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Aftercare
Survivors
Neoplasms
Survival Rate
Self Care
Health Services
History
Interviews

Keywords

  • Childhood cancer; adolescent; survivorship; long-term follow-up; late effects; health services

Cite this

@article{a73c732dd0be450fbc4d626b2cc6448a,
title = "A Study of Childhood Cancer Survivors’ Engagement with Long-Term Follow-Up Care: ‘To attend or not to attend, that is the question’.",
abstract = "PurposeIn the UK, there are over 40,000 childhood cancer survivors (CCS); this figure grows approximately 1,300 annually. Two-thirds are at risk of developing serious disabling or life-threatening conditions due to adverse late effects of the cancer or treatment received in childhood. Life-long, follow-up care for the surveillance and management of late effects is recommended. This study explored CCS’ views and experiences of long-term follow-up (LTFU) care within a cancer centre.MethodsPaper questionnaires (n=113) and qualitative interviews (n=13).Results The majority (n=83, 80{\%}) of CCS reported being satisfied with their LTFU care and felt that it was important to attend long-term survivorship follow-up (n=97, 86{\%}). However, some were not well informed about their cancer treatment history, purpose for attending the clinic or the potential for late effects. Barriers associated with LTFU included; provision of information, lack of interpersonal relationships, practical and logistic challenges.Conclusions Barriers identified can be addressed through strategies including provision of verbal and written information and care plans to increase CCS’ knowledge of their cancer history, risk of late effects and the purpose of LTFU care, both at transition and throughout their survivorship journey; patient-centred services that enhance patient choice and flexibility of access to multiple specialities; and use of risk stratified pathways to encourage supported self-management based on cancer type, co-morbidity, and level of professional involvement required. Improving regular provision of information at critical time-points, and exploring a flexible, patient-centred delivery of LFTU care based on risk, could increase attendance and self-management in CCS. KEYWORDS Childhood cancer; adolescent; survivorship; long-term follow-up; late effects; health services",
keywords = "Childhood cancer; adolescent; survivorship; long-term follow-up; late effects; health services",
author = "JENNIFER KIRTON and KATHERINE KNIGHTING and LUCY BRAY and James Hayden and Lynda Appleton and Nicki Thorp",
year = "2020",
month = "2",
day = "3",
language = "English",
journal = "European Journal of Oncology Nursing",
issn = "1462-3889",
publisher = "Elsevier",

}

TY - JOUR

T1 - A Study of Childhood Cancer Survivors’ Engagement with Long-Term Follow-Up Care: ‘To attend or not to attend, that is the question’.

AU - KIRTON, JENNIFER

AU - KNIGHTING, KATHERINE

AU - BRAY, LUCY

AU - Hayden, James

AU - Appleton, Lynda

AU - Thorp, Nicki

PY - 2020/2/3

Y1 - 2020/2/3

N2 - PurposeIn the UK, there are over 40,000 childhood cancer survivors (CCS); this figure grows approximately 1,300 annually. Two-thirds are at risk of developing serious disabling or life-threatening conditions due to adverse late effects of the cancer or treatment received in childhood. Life-long, follow-up care for the surveillance and management of late effects is recommended. This study explored CCS’ views and experiences of long-term follow-up (LTFU) care within a cancer centre.MethodsPaper questionnaires (n=113) and qualitative interviews (n=13).Results The majority (n=83, 80%) of CCS reported being satisfied with their LTFU care and felt that it was important to attend long-term survivorship follow-up (n=97, 86%). However, some were not well informed about their cancer treatment history, purpose for attending the clinic or the potential for late effects. Barriers associated with LTFU included; provision of information, lack of interpersonal relationships, practical and logistic challenges.Conclusions Barriers identified can be addressed through strategies including provision of verbal and written information and care plans to increase CCS’ knowledge of their cancer history, risk of late effects and the purpose of LTFU care, both at transition and throughout their survivorship journey; patient-centred services that enhance patient choice and flexibility of access to multiple specialities; and use of risk stratified pathways to encourage supported self-management based on cancer type, co-morbidity, and level of professional involvement required. Improving regular provision of information at critical time-points, and exploring a flexible, patient-centred delivery of LFTU care based on risk, could increase attendance and self-management in CCS. KEYWORDS Childhood cancer; adolescent; survivorship; long-term follow-up; late effects; health services

AB - PurposeIn the UK, there are over 40,000 childhood cancer survivors (CCS); this figure grows approximately 1,300 annually. Two-thirds are at risk of developing serious disabling or life-threatening conditions due to adverse late effects of the cancer or treatment received in childhood. Life-long, follow-up care for the surveillance and management of late effects is recommended. This study explored CCS’ views and experiences of long-term follow-up (LTFU) care within a cancer centre.MethodsPaper questionnaires (n=113) and qualitative interviews (n=13).Results The majority (n=83, 80%) of CCS reported being satisfied with their LTFU care and felt that it was important to attend long-term survivorship follow-up (n=97, 86%). However, some were not well informed about their cancer treatment history, purpose for attending the clinic or the potential for late effects. Barriers associated with LTFU included; provision of information, lack of interpersonal relationships, practical and logistic challenges.Conclusions Barriers identified can be addressed through strategies including provision of verbal and written information and care plans to increase CCS’ knowledge of their cancer history, risk of late effects and the purpose of LTFU care, both at transition and throughout their survivorship journey; patient-centred services that enhance patient choice and flexibility of access to multiple specialities; and use of risk stratified pathways to encourage supported self-management based on cancer type, co-morbidity, and level of professional involvement required. Improving regular provision of information at critical time-points, and exploring a flexible, patient-centred delivery of LFTU care based on risk, could increase attendance and self-management in CCS. KEYWORDS Childhood cancer; adolescent; survivorship; long-term follow-up; late effects; health services

KW - Childhood cancer; adolescent; survivorship; long-term follow-up; late effects; health services

M3 - Article

JO - European Journal of Oncology Nursing

JF - European Journal of Oncology Nursing

SN - 1462-3889

ER -