Abstract
Objective
To explore head and neck cancer (HNC) patients’ and their family members’ views on acceptability and feasibility of patient-initiated follow-up (PIFU), including concerns and anticipated benefits.
Methods
Patients were recruited from UK HNC clinics, support groups and advocacy groups. They completed a survey (n=144) and/or qualitative interview (n=30), 3 with a family member. Qualitative data were analysed thematically, quantitative data using descriptive statistics.
Results
Preference for follow-up care in HNC was complex and individual. Many patients thought PIFU could beneficially reallocate healthcare resources and encourage self-management. Patients’ main concerns with PIFU were losing the reassurance of regular clinic appointments and addressing mental wellbeing needs within PIFU, possibly using peer support. Patients were concerned about their ability to detect recurrence due to lack of expertise and information. They emphasised the importance of a reliable, direct and easy urgent appointment service and of feeling supported and heard by clinicians. Patients believed family and friends need support.
Conclusion
PIFU may be feasible and acceptable for certain HNC patients, providing it addresses support for mental wellbeing, provides quick, reliable and direct clinician access and information on ‘red flag’ symptoms, and ensures patients and their caregivers feel supported.
To explore head and neck cancer (HNC) patients’ and their family members’ views on acceptability and feasibility of patient-initiated follow-up (PIFU), including concerns and anticipated benefits.
Methods
Patients were recruited from UK HNC clinics, support groups and advocacy groups. They completed a survey (n=144) and/or qualitative interview (n=30), 3 with a family member. Qualitative data were analysed thematically, quantitative data using descriptive statistics.
Results
Preference for follow-up care in HNC was complex and individual. Many patients thought PIFU could beneficially reallocate healthcare resources and encourage self-management. Patients’ main concerns with PIFU were losing the reassurance of regular clinic appointments and addressing mental wellbeing needs within PIFU, possibly using peer support. Patients were concerned about their ability to detect recurrence due to lack of expertise and information. They emphasised the importance of a reliable, direct and easy urgent appointment service and of feeling supported and heard by clinicians. Patients believed family and friends need support.
Conclusion
PIFU may be feasible and acceptable for certain HNC patients, providing it addresses support for mental wellbeing, provides quick, reliable and direct clinician access and information on ‘red flag’ symptoms, and ensures patients and their caregivers feel supported.
| Original language | English |
|---|---|
| Article number | e13641 |
| Number of pages | 12 |
| Journal | European Journal of Cancer Care |
| Volume | 31 |
| Issue number | 6 |
| Early online date | 4 Jul 2022 |
| DOIs | |
| Publication status | E-pub ahead of print - 4 Jul 2022 |
Bibliographical note
Funding Information:information This study/project is funded by the National Institute for Health Research (NIHR) under its Programme Grants for Applied Research Programme (NIHR200861). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care. Professor Mehanna is a National Institute for Health Research (NIHR) Senior Investigator. The views expressed in this article are those of the author(s) and not necessarily those of the NIHR, or the Department of Health and Social Care.We are very grateful to all the participants who gave up their time to complete the survey and/or be interviewed. We would like to thank all the groups and individuals who helped us recruit participants—Dr Austin Kirwan, Swallows, Heads2gether, Maggie's, Northern Head and Neck Cancer Charity, Merseyside Head & Neck Cancer Patient and Carer Support Group (HaNC), Warrington Head & Neck Cancer Support Group, North Staffordshire Head and Neck Cancer Support Group, Salivary Gland Cancer UK, Independent Cancer Patient Voices, NCRI – Head and Neck Cancer and the Brain Trust. We would also like to thank all the members of the PETNECK2 Patient Advisory Group for their invaluable input into the study.
Funding Information:
This study/project is funded by the National Institute for Health Research (NIHR) under its Programme Grants for Applied Research Programme (NIHR200861). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care. Professor Mehanna is a National Institute for Health Research (NIHR) Senior Investigator. The views expressed in this article are those of the author(s) and not necessarily those of the NIHR, or the Department of Health and Social Care.
Publisher Copyright:
© 2022 The Authors. European Journal of Cancer Care published by John Wiley & Sons Ltd.
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