Exploring the views of patients' and their family about patient-initiated follow-up in head and neck cancer: A mixed methods study.
Lorenc, Ava Greaves, Colin Duda, Joan Brett, Jo Matheson, Lauren Fulton-Lieuw, Tessa Secher, Denis Rhodes, Pat Ozakinci, Gozde Nankivell, Paul
Lorenc, Ava
Greaves, Colin
Duda, Joan
Brett, Jo
Matheson, Lauren
Fulton-Lieuw, Tessa
Secher, Denis
Rhodes, Pat
Ozakinci, Gozde
Nankivell, Paul
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2022-07-04
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Abstract
Objective: The objective of this work was 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), three 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 health care resources and encourage self-management. Patients' main concerns with PIFU were losing the reassurance of regular clinic appointments and addressing mental well-being 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 well-being, provides quick, reliable and direct clinician access and information on "red flag" symptoms, and ensures patients and their caregivers feel supported.
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Lorenc A, Greaves C, Duda J, Brett J, Matheson L, Fulton-Lieuw T, Secher D, Rhodes P, Ozakinci G, Nankivell P, Mehanna H, Jepson M; PETNECK2 Research Team. Exploring the views of patients' and their family about patient-initiated follow-up in head and neck cancer: A mixed methods study. Eur J Cancer Care (Engl). 2022 Nov;31(6):e13641. doi: 10.1111/ecc.13641. Epub 2022 Jul 4
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Article