Exploring experiences after chemoradiotherapy for oropharyngeal cancer
Research type
Research Study
Full title
The psychosocial experiences and needs of oropharyngeal (HPV+ve) cancer patients and their primary informal caregivers following radical (chemo)radiotherapy.
IRAS ID
287918
Contact name
Sara Matthews
Contact email
Sponsor organisation
Oxford Brookes University
Duration of Study in the UK
1 years, 9 months, 1 days
Research summary
Summary of Research:
This study will explore the experiences and needs of oropharyngeal cancer patients and their primary informal caregivers after (chemo)radiotherapy. Findings will then inform the co-design of a supportive intervention in partnership with oropharyngeal cancer patients, caregivers and health professionals.
Oropharyngeal cancer incidence has quadrupled since 1990, mainly affecting middle aged adults and linked to the Human Papilloma Virus (HPV). This disease subset of head and neck cancers is responsive to treatment, meaning that many patients survive their cancer, living, however, with significant treatment side effects and consequences (e.g. difficulty swallowing and financial difficulties). Patients and their partners may also have distinct information and support needs related to HPV.
A recent change in management to that of stratification after (chemo)radiotherapy treatment following a response assessment PET-CT (Positron Emission Tomography and Computed Tomography) scan means most patients can avoid a previously routine neck dissection, with its risks and aesthetic consequences. However, little is known about patients’ and caregivers’ experiences of this new pathway. Whilst waiting for the scan and its results, contact with health professionals is reduced, just as treatment side effects peak. Anecdotally, clinicians and past patients report high levels of anxiety.
This study will invite patients and their primary informal caregivers to explore their experiences during this early recovery phase in semi-structured interviews. Past research, clinical colleagues at Oxford University Hospitals NHS Foundation Trust (OUHFT) and the views of a User Advisory Group (UAG), established for this study, have informed the study design and conduct. Invitations to participate will be issued to eligible patients during their treatment. Quality of life will be measured.
Qualitative analysis of the interviews will inform the co-design of an intervention in service user and health professional workshops. This partnership approach will aim to translate the research into action, improving support for future patients and their caregivers.Summary of Findings:
This study aimed to understand experiences and support needs of people with throat cancer during the first weeks after the end of (chemo)radiotherapy. 25 people took part in the study, which involved interviews with 16 patients and 9 caregivers (spouses and partners).
Treatment side effects were worse than expected. Patients were shocked by how ill they became and how long it took to feel any better. The ups and downs of recovery affected them emotionally, as much as physically. The hospital cared for them well during treatment but contact afterwards at home was needed. Better preparation for how hard it was going to be, and for the changes to life was also wanted. Information about nutrition after head and neck cancer and help with returning to work were further support needs. Sharing experiences with other patients at support groups had helped some to know what it would be like.
Not knowing what to expect had also made the caregiving role difficult. Caregivers felt unprepared to take over from the hospital team and described working out how to help for themselves. Seeing their partner suffering affected them emotionally. It was hard to juggle caring with working and looking after their children. The role and the patient’s illness were isolating and limited their usual sources of support, including that from their partner but also from friends and family. They had to look for support for themselves from charities and other caregivers. These caregivers also wanted contact from the hospital team after treatment so they could share their concerns and get support.
Proposals for support were informed by this new understanding. An NIHR Research for Patient Benefit award has been received to continue this research and develop an intervention to support both patients and caregivers through the difficult time after treatment.REC name
Wales REC 6
REC reference
21/WA/0092
Date of REC Opinion
1 Apr 2021
REC opinion
Further Information Favourable Opinion