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.
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 |
| Early online date | 4 Jul 2022 |
| DOIs | |
| Publication status | E-pub ahead of print - 4 Jul 2022 |
Keywords
- head and neck cancer
- patient education
- patient information
- psychological
- supportive care
- users
