TABLE 2.

Main qualitative study characteristics.

Author, year, country	Type and focus of study	Recruitment of participants	(a) setting and method for data collection; (b) person collecting data; (c) type of analysis	(a) number of participants; (b) mean (SD) age; (c) ethnicity; (d) HCP role (if applicable)	(a) type of cancer; (b) time since treatment end; (c) length of participating in PIFU	Description of PIFU	Representativeness of sample
Breast cancer
Brown 2002, UK 15	Randomised controlled trial, but included structured interviews Comparison of standard clinical follow‐up with PIFU in women treated for breast cancer	All women in the randomised controlled trial	(a) not stated; some interviews over the telephone. Structured 5–10‐min interviews; items were influenced by relevant literature and from results of a pilot study investigating the attitudes of 100 women to their outpatient follow‐up at the same clinics conducted by the authors (b) research nurse (c) content analysis with each topic reported coded as 1 (no) and 2 (yes). Frequency data then collected for each group	(a) 27/30 at 6 months, 28/30 at 1 year (PIFU group), 24/31 at 6 months, 26/31 at 1 year (standard clinic group) (b) Mean age 68 (53–87) PIFU group, 63 (48–83) standard clinic group. (c) no details	(a) stage I breast cancer (b) at least 1 year and up to 5 years since treatment (c) 1 year of PIFU	Women given written information on the signs and symptoms of recurrence and instructed to telephone the Breast Care Nurse if they encountered any problems. All women also had a yearly mammogram.	50% of those approached refused to participate in study.
Koinberg 2002, Sweden 20	Qualitative. Breast cancer patients' satisfaction with a spontaneous system of check‐ups.	Strategic sample of women who had participated in the specialist nurse intervention.	(a) University hospital; semistructured interviews (20–40 min); questions previously tested in pilot interviews (b) principle author (oncology nurse) (c) qualitative descriptive design with phenomenographic approach	(a) 19 participants. (b) mean age 63 (no SD) (c) no details	(a) stage I or II breast cancer (b) between 2 and 7 years after surgery (c) length of PIFU unclear	Women could contact a specialist nurse when the need arose. No details on whether a symptom checklist was provided. All women also had a yearly mammogram.	Strategically chosen sample to get as wide a variation as possible (in age, education, marital status, year since operation). No details on patient characteristics.
Moore & Matheson 2022, UK 23	Qualitative study (as part of wider mixed methods study). Experience of a ‘Supported Early Discharge Follow‐up’ (PIFU) service.	Purposive subsample from a larger group of patients taking part in PIFU at two UK hospitals.	(a) Semistructured interviews via telephone (audio‐recorded), lasting 30–45 min (range 25–60 min) and using an interview topic guide (b) Interviews conducted by an experienced health researcher not involved with patient's clinical care (c) Thematic analysis	(a) 20 participants (b) 10% under 40 years, 35% 40–55 years, 55% over 55 years (c) 1 (5%) White British and Caribbean mixed race, 19 (95%) White British	(a) any primary breast cancer except those on endocrine therapy only or with secondary/metastatic or locally advanced disease. (b) around 3 months after treatment end in one centre and 6 months in the other centre (up to 12 months for some patients due to staffing issues in the latter). (c) women were on average 2–3 years (postdiagnosis) at time of interview	Holistic needs assessment and End of Treatment Summary through nurse‐led clinics followed by discharge from hospital around 6 months following the end of adjuvant treatment; open access to appointments (within 2 weeks); annual mammography for 5 years.	Purposive sampling to ensure that interviewees included a range of ages, breast cancer treatments and levels of needs and concerns (as reported via survey). Patients were excluded from PIFU if they had: learning difficulties; mental health issues; endocrine therapy only; secondary or metastatic or locally advanced disease; recruited on clinical trials.
Muktar 2015, UK 24	Survey with ‘free text’ comments section (NB only qualitative data considered here) Breast cancer patients' (in standard FU) preferences for future FU including open‐access FU.	All eligible patients at one hospital who had received at least 6 months of standard FU were invited to complete a questionnaire during a 6‐month period.	(a) teaching hospital; ‘free text’ section on questionnaire (b) anonymised questionnaire (c) ‘key themes identified’	(a) 317 women recruited (unclear how many invited). Unclear how many patients contributed to qualitative data (b) age not stated (c) 78% Caucasian, 9% Afro‐Caribbean, 7% Indo‐Asian	(a) any stage of breast cancer (b) at least 6 months (c) N/A (all in routine FU)	Hypothetical open‐access FU scenario (flowchart) presented as part of the questionnaire.	Unclear how many patients contributed to qualitative data from wider pool of those responding to survey.
Endometrial cancer
Beaver 2020, UK 13	Mixed methods study. Acceptability and feasibility of patient‐initiated follow‐up for women treated for stage I endometrial cancer.	Gynaecology oncologists and clinical nurse specialists asked to identify suitable patients from outpatient clinics; those indicating interest discussed the study with a researcher.	(a) setting not stated; semistructured interviews. (b) no detail on who was collecting data (c) content/thematic analysis	(a) of 65 women eligible for study, 17 agreed to participate; 14/17 participated in interviews (b) mean age 59.41 (10.82) (c) 16 White, 1 Indian	(a) stage I endometrial (b) mean 6 months (c) median 9 months (range 7–10 months)	Patients asked to forego hospital outpatient appointments, supported by a self‐management approach. Information given on signs and symptoms of recurrence and who to contact. Hospital‐based appointment at the end of the study.	26% of eligible patients participated. No data on reasons for nonparticipation or characteristics of nonparticipating patients.
Kumarakulasingam 2019, UK 22	Mixed methods study. Acceptability of PIFU for endometrial cancer.	Randomly sampled from 4 groups enrolled on the PIFU scheme introduced at University Hospitals Leicester (4 groups: British White; non‐British White; started on PIFU; transferred from hospital FU to PIFU).	(a) outpatients' clinic room; semistructured interviews (20–58 min) (b) two female members of the research team (c) thematic analysis; triangulation with quantitative aspects	(a) 21 women of 51 contacted (b) age not stated for the 21 women (c) 89.5% White British, 10.5% non‐White British (22 British South Asian, 2 African/Afro‐Caribbean)	(a) early stage endometrial PIFU immediately after end of treatment or transferred from hospital FU (b) time in hospital FU not known (c) median 14 months (95% CI 12.9, 14.3 months)	Contact details of clinical nurse specialist provided at end of treatment appointment, as well as written information on signs and symptoms that should prompt medical review. 6‐ and 12‐month telephone calls to ensure patient was happy to continue on PIFU and had contact details.	21/51 (41%) contacted agreed to interviews. No details on reasons for non‐participation or characteristics of nonparticipating patients.
Sharma 2020, UK 25	Survey with ‘free text’ comments section (NB only qualitative data considered here) Patient satisfaction with PIFU for endometrial cancer	All women who underwent surgery for stage I endometrial cancer in a district general hospital 2013–2018); all had agreed to PIFU.	(a) data collected via a telephone call where patients were asked a series of prespecified questions. One was an open‐ended question asking for any comments. (b) clinical nurse specialist (c) no details on type of analysis (‘individual comments were noted’).	(a) 94/104 (90%) responded to the survey but unclear how many provided free text comments. Not all women were contacted each year. (b) no details (c) no details	(a) stage I endometrial cancer (b) PIFU commenced 2–4 weeks after surgery (c) between 2 and 5 years	Patient‐led telephone follow‐up, where they could call the clinical nurse specialist team at any time if they had any concerns.	Unclear as not known how many/which women provided free text comments.
Head and neck cancer
Lorenc 2022, UK 32	Qualitative study. Clinicians' views of patient‐initiated follow‐up in head and neck cancer to inform the design of a trial on PIFU compared with routine FU.	Via personal contacts of the team and multidisciplinary professional body mailing lists representing HNC clinicians. Some participants suggested colleagues.	(a) eight online focus groups with between one and six participants with the same role (b) the facilitators did not know the participants beforehand (c) thematic analysis	(a) 34 participants. (b) no details (c) no details (d) ear, nose and throat and maxillofacial surgeons, oncologists, clinical nurse specialists, allied health professionals (speech and language therapists, dietitians and radiographers).	(a) head and neck (b) N/A (c) None of the participants had direct experience of PIFU. PIFU described is that of planned trial	NB planned PIFU for future trial Routine FU for first‐year post‐treatment. PET‐CT scan at study entry followed by PIFU (if scan negative). PIFU includes an allied health professional (AHP)/nurse‐led education session, an information and support resource and rapid access to urgent clinical appointments within 2 weeks. The information and support resource provides information on symptoms to be aware of, a diary to monitor symptoms and contact details for easy access to clinical team.	Range of roles (n = 6) included and participants from various geographical regions. Many participants were colleagues of those involved in an upcoming trial of PIFU compared with routine FU and/or had been involved in the grant application for the trial.
Any cancer
Williamson 2020, UK 6	Qualitative. Healthcare professionals' views of alternative strategies for follow‐up care	Combination of convenience and snowball sampling to identify range of participants.	(a) semistructured interview by telephone or face‐to‐face if preferred (b) interview conducted by one researcher unknown to the participants (c) thematic analysis.	(a) 21 participants time in current post mean of 7 years (range 1.5–18 years). (b) no details (c) no details (d) clinical nurse specialists, lead cancer nurses, consultant surgeons, oncologists, GPs, commissioners of cancer services and NHS managers	(a) any type of cancer (some focus on breast and prostate) (b) N/A (c) length of experience with PIFU variable and/or limited given that programmes were in early phases of implementation.	Not one particular type. Views sought on various follow‐up strategies. All participants reported that their institutions had attempted to implement alternative FU models of care; most were in the developmental or early phases of implementation. Focus on common cancers such as breast and prostate.	Range of roles (n = 12) included and participants from various geographical regions. But small number of participants given the number of different types of post/roles.