Understanding the needs and experiences of young cancer patients, caregivers and healthcare professionals in the UK following childhood fertility tissue preservation (FTP): a qualitative study informed by patient and public involvement and engagement
Background Childhood cancer treatment can cause subfertility in adulthood. Ovarian or testicular tissue preservation is a rapidly evolving field with significant potential benefits. However, the establishment of patient-centred reproductive survivorship pathways remains a challenge in clinical setti...
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BMJ Publishing Group
2025-07-01
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| Series: | BMJ Open |
| Online Access: | https://bmjopen.bmj.com/content/15/7/e088025.full |
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| author | Richard Feltbower Georgina Louise Jones Rebecca Mottram Adam Glaser Sarah Gelcich Katherine McLean Catherine Kelly |
| author_facet | Richard Feltbower Georgina Louise Jones Rebecca Mottram Adam Glaser Sarah Gelcich Katherine McLean Catherine Kelly |
| author_sort | Richard Feltbower |
| collection | DOAJ |
| description | Background Childhood cancer treatment can cause subfertility in adulthood. Ovarian or testicular tissue preservation is a rapidly evolving field with significant potential benefits. However, the establishment of patient-centred reproductive survivorship pathways remains a challenge in clinical settings due to a lack of robust evidence to inform its development. Patient and public involvement and engagement (PPIE) consultation may help ensure that future studies align with patient needs and that tailored survivorship care pathways are developed for young people with preserved fertility tissue.Aim This PPIE consultation aimed to identify priority areas for future research that would support the development of a tailored survivorship care pathway for childhood cancer survivors who have preserved tissue for future fertility.Methods Recruitment occurred through national networks, including collaborations with advocacy groups such as Candlelighters and clinical networks. Data were collected via telephone or online unstructured interviews, with some supplementary email exchanges. Thematic analysis was used to identify emergent themes. The Guidance for Reporting Involvement of Patients and the Public (GRIPP)-2 guidelines were used to help guide PPIE.Setting An online focus group and/or a one-to-one interview with e-mail interactions.Participants In total, 12 unique participants took part in a focus group and/or interview. Participants included parents of children who had stored tissue, young adult cancer survivors with stored tissue and five clinicians from the leading National Health Service (NHS) centres in the UK.Results Six key themes emerged that highlighted unmet needs and priority areas for research: (1) Lack of communication and information; (2) unmet needs in follow-up care; (3) emotional impact and psychological support; (4) importance of patient and parental involvement; (5) desire for information and education; and (6) long-term concerns and support. Parents, young adults and healthcare clinicians found talking about fertility issues difficult. They noted that consistency of care, education resources and access to emotional support were important areas where improvements could be made. We used thematic analysis to help identify patterns in the data, and we used the Guidance for Reporting Involvement of Patients and the Public (GRIPP)-2 reporting guidelines for PPIE work.Conclusions PPIE provided valuable insights into the experiences of childhood cancer survivors with preserved fertility tissue, their parents and clinicians, highlighting priority areas to guide future research and ensure it addresses the concerns of care recipients. Our findings suggest that childhood cancer survivors who preserve tissue for future fertility need personalised follow-up care with information and psychological support. A larger sample of participants, studied using a qualitative research design, is needed to capture the full range of experiences, needs and preferences and to ensure that care is inclusive and relevant to the wider population. |
| format | Article |
| id | doaj-art-cc00fd78300f46f697a9b1a747d76cf1 |
| institution | Kabale University |
| issn | 2044-6055 |
| language | English |
| publishDate | 2025-07-01 |
| publisher | BMJ Publishing Group |
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| series | BMJ Open |
| spelling | doaj-art-cc00fd78300f46f697a9b1a747d76cf12025-08-20T03:34:58ZengBMJ Publishing GroupBMJ Open2044-60552025-07-0115710.1136/bmjopen-2024-088025Understanding the needs and experiences of young cancer patients, caregivers and healthcare professionals in the UK following childhood fertility tissue preservation (FTP): a qualitative study informed by patient and public involvement and engagementRichard Feltbower0Georgina Louise Jones1Rebecca Mottram2Adam Glaser3Sarah Gelcich4Katherine McLean5Catherine Kelly6University of Leeds, Leeds, UKLeeds Beckett University, Leeds, UKUniversity of Leeds, Leeds, UKUniversity of Leeds, Leeds, UKUniversity of Leeds, Leeds, UKPPIE Representative, Leeds, UKPPIE Representative, Leeds, UKBackground Childhood cancer treatment can cause subfertility in adulthood. Ovarian or testicular tissue preservation is a rapidly evolving field with significant potential benefits. However, the establishment of patient-centred reproductive survivorship pathways remains a challenge in clinical settings due to a lack of robust evidence to inform its development. Patient and public involvement and engagement (PPIE) consultation may help ensure that future studies align with patient needs and that tailored survivorship care pathways are developed for young people with preserved fertility tissue.Aim This PPIE consultation aimed to identify priority areas for future research that would support the development of a tailored survivorship care pathway for childhood cancer survivors who have preserved tissue for future fertility.Methods Recruitment occurred through national networks, including collaborations with advocacy groups such as Candlelighters and clinical networks. Data were collected via telephone or online unstructured interviews, with some supplementary email exchanges. Thematic analysis was used to identify emergent themes. The Guidance for Reporting Involvement of Patients and the Public (GRIPP)-2 guidelines were used to help guide PPIE.Setting An online focus group and/or a one-to-one interview with e-mail interactions.Participants In total, 12 unique participants took part in a focus group and/or interview. Participants included parents of children who had stored tissue, young adult cancer survivors with stored tissue and five clinicians from the leading National Health Service (NHS) centres in the UK.Results Six key themes emerged that highlighted unmet needs and priority areas for research: (1) Lack of communication and information; (2) unmet needs in follow-up care; (3) emotional impact and psychological support; (4) importance of patient and parental involvement; (5) desire for information and education; and (6) long-term concerns and support. Parents, young adults and healthcare clinicians found talking about fertility issues difficult. They noted that consistency of care, education resources and access to emotional support were important areas where improvements could be made. We used thematic analysis to help identify patterns in the data, and we used the Guidance for Reporting Involvement of Patients and the Public (GRIPP)-2 reporting guidelines for PPIE work.Conclusions PPIE provided valuable insights into the experiences of childhood cancer survivors with preserved fertility tissue, their parents and clinicians, highlighting priority areas to guide future research and ensure it addresses the concerns of care recipients. Our findings suggest that childhood cancer survivors who preserve tissue for future fertility need personalised follow-up care with information and psychological support. A larger sample of participants, studied using a qualitative research design, is needed to capture the full range of experiences, needs and preferences and to ensure that care is inclusive and relevant to the wider population.https://bmjopen.bmj.com/content/15/7/e088025.full |
| spellingShingle | Richard Feltbower Georgina Louise Jones Rebecca Mottram Adam Glaser Sarah Gelcich Katherine McLean Catherine Kelly Understanding the needs and experiences of young cancer patients, caregivers and healthcare professionals in the UK following childhood fertility tissue preservation (FTP): a qualitative study informed by patient and public involvement and engagement BMJ Open |
| title | Understanding the needs and experiences of young cancer patients, caregivers and healthcare professionals in the UK following childhood fertility tissue preservation (FTP): a qualitative study informed by patient and public involvement and engagement |
| title_full | Understanding the needs and experiences of young cancer patients, caregivers and healthcare professionals in the UK following childhood fertility tissue preservation (FTP): a qualitative study informed by patient and public involvement and engagement |
| title_fullStr | Understanding the needs and experiences of young cancer patients, caregivers and healthcare professionals in the UK following childhood fertility tissue preservation (FTP): a qualitative study informed by patient and public involvement and engagement |
| title_full_unstemmed | Understanding the needs and experiences of young cancer patients, caregivers and healthcare professionals in the UK following childhood fertility tissue preservation (FTP): a qualitative study informed by patient and public involvement and engagement |
| title_short | Understanding the needs and experiences of young cancer patients, caregivers and healthcare professionals in the UK following childhood fertility tissue preservation (FTP): a qualitative study informed by patient and public involvement and engagement |
| title_sort | understanding the needs and experiences of young cancer patients caregivers and healthcare professionals in the uk following childhood fertility tissue preservation ftp a qualitative study informed by patient and public involvement and engagement |
| url | https://bmjopen.bmj.com/content/15/7/e088025.full |
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