Katherine Knighting1, Jennifer A Kirton2, Nicola Thorp3, James Hayden4, Lynda Appleton5, Lucy Bray6. 1. Faculty of Health and Social Care, Edge Hill University, Ormskirk, Lancashire, L39 4QP, UK. Electronic address: knightk@edgehill.ac.uk. 2. Faculty of Health and Social Care, Edge Hill University, Ormskirk, Lancashire, L39 4QP, UK. Electronic address: Jennifer.kirton@edgehill.ac.uk. 3. The Clatterbridge Cancer Centre NHS Foundation Trust, Clatterbridge Road, Bebington Wirral, CH63 4JY, UK. 4. Alder Hey Children's NHS Foundation Trust, Eaton Road, Liverpool, L12 2AP, UK. Electronic address: j.hayden@nhs.net. 5. The Clatterbridge Cancer Centre NHS Foundation Trust, Clatterbridge Road, Bebington Wirral, CH63 4JY, UK. Electronic address: Lynda.appleton@nhs.net. 6. Faculty of Health and Social Care, Edge Hill University, Ormskirk, Lancashire, L39 4QP, UK. Electronic address: brayl@edgehill.ac.uk.
Abstract
PURPOSE: In the UK, there are over 40,000 childhood cancer survivors (CCS); this figure grows approximately 1300 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.
PURPOSE: In the UK, there are over 40,000 childhood cancer survivors (CCS); this figure grows approximately 1300 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.
Authors: Maria Mitus-Kenig; Marcin Derwich; Ewa Czochrowska; Elzbieta Pawlowska Journal: Int J Environ Res Public Health Date: 2020-12-04 Impact factor: 3.390
Authors: Karim Thomas Sadak; Milki T Gemeda; Michelle Grafelman; Joseph P Neglia; David R Freyer; Eileen Harwood; Jude Mikal Journal: BMC Cancer Date: 2020-09-21 Impact factor: 4.430