Table 1

Summary of type of participants included in qualitative study.

Study and countryPart of RCT? (trial reference)ParticipantsType of follow-upCancer siteStudy type (theoretical perspective)Comments
Adewuyi-Dalton, 199819 UKYES — Control group only (hospital vs GP)51Patients (n = 113)HospitalBreastSemi-structured interviews (Not stated)Categories and themes not derived from the data — themes were decided in advance and data were selected to fit the themes
Allen, 200420 UKNOPatients (n = 6)HospitalBreastIn-depth interviews (Phenomenography)All patients treated by same surgeon and oncologist; not stated how they were selected/recruited. Research conducted by a McMillan breast cancer nurse
Anvik, 200621 NorwayYES — Intervention + control groups (formal consultation with GP plus hospital follow-up vs conventional hospital follow-up)52Patients (n = 91) GPs (n = 23)Integrated hospital and GPMultiple siteGPs: semi-structured interviews and focus groups (n = 6; 17 participants in each group). Patients: survey questionnaires — open ended questions — or same questions asked by GPs, GPs made notes of answers (Phenomenography)Patients' views based on free text comments from questionnaires (control group) or comments recorded by GPs in response to open-ended questions used during consultation (intervention group)
Beaver, 20051 UKNOClinical consultation (n = 106); HCPs (n = 14); patients (n = 92); HCPs = consultant surgeon, consultant clinical oncologist, specialist registrar, specialist breast care nurse, clinic staff nurses, clinic managerHospitalBreastDirect observation of consultation; audio-recorded. Patients: survey questionnaires; open + closed questions. HCPs: Semi-structured interviews. (Ethnographic approach – non-participant observation, and modified grounded theory)Well-conducted and clearly reported study
Bradburn, 199522 UKNO — (Used to inform RCT protocol development, hospital vs GP)51Patients (n = 29)HospitalBreast3 focus groups of 8–12 participants (Not stated)Participants primarily recruited via local cancer support groups. Poorly reported study
Bradley, 199923 UKNOPatients (n = 12)HospitalGynaeSemi-structured interviews (Grounded theory)Poorly reported study. One researcher conducted all the interviews; not stated if <1 researcher involved in analysis, and no quality control measures described. Analyses, themes, and categories not fully explained. Quotations were anonymous – no means of telling whether they were from different patients or not
Brown, 200224 UKYES — Intervention + control group (Nurse vs hospital)24Patients (n = 61)Hospital and PI-Nurse (telephone)BreastStructured interviews (face-to face or telephone) (Not stated)Interviews conducted by a research nurse; structured interview schedule included 6 items that were not reported. Only very brief details of analysis given; number of researchers involved not stated. Qualitative data analysed in a predominantly quantitative manner using statistical tests to compare groups. No method reported to ensure accuracy of grading data into binary outcomes
Cox, 200625 UKNOPatients (n = 54), GPs (n = 38), relatives (n = 20), clinical staff involved in patient care (n = 31). (Response rates: patients 63%, relatives 50%, staff 65%, GPs 29%) 60/72 eligible patients approached to participate; 54 agreed and 34 returned the questionnaire. Random sample of responders interviewed (6/21 patients agreed to be interviewed plus 3 relatives, 4 staff, and 2 GPs; number approached not stated)Hospital (participants given vignette scenarios of 4 methods of follow-up: telephone, nurse, GP, conventional hospital)LungSurvey questionnaires, on vignettes; in-depth interviews (Grounded theory)Qualitative element of study poorly reported and in places difficult to follow. No rationale given for selecting random sample for interviews; purposive sample might have been more appropriate. Patient and relative views reported separately to staff and GPs, but not clear why. When different themes emerged from same interview schedule, exploration of differences and overlaps in concerns was missing
Jiwa, 200626 UKNORepresentatives from six stakeholder groups: GPs, practice nurses, breast care nurse specialists, oncologists, surgeons or specialists registrars, and patients (number of participants not stated)Hospital (discussions about essential elements of a model of primary care follow-up)Breast3 focus groups — 6–8 participants. Nominal group – representatives from focus groups (Not stated)Only limited results from focus groups presented and links between quotes and text not always clear. Rational for recruiting patients not reported. Study did not seek to describe individual experiences and insights; focus groups used to identify barriers to primary care follow-up (definitive list of barriers not reported) and nominal group meetings used as a problem solving exercise
Johansson, 200027 NorwayYES — Intervention + control group (extended information to GPs + hospital follow-up vs hospital follow-up)53GPs (n = 20). Taken from sample of 100 GPs reported as being personal GPs to a selection of patients included in trial; 83 received extended information from secondary care as part of intervention and 17 had not. Ten patients initially selected from those who had not received intervention, then 10 matching GPs selected from those who received intervention. 527 patients randomised as part oforiginal trial,42 of which 260 (49%) reported a personal GPIntegrated hospital and GPMultiple siteSemi-structured telephone interviews (Not stated)Characteristics of included GPs not described. Data analysed quantitatively. Type and number of statistical tests carried out not stated; only statistically significant findings reported. Definition of some categories unclear. Intervention started at time of diagnosis, not follow-up
Koinberg, 200129 SwedenYES — Control group only (PI-nurse vs hospital)54Patients (n = 20) 131 patients randomised to conventional hospital follow-upHospitalBreastSemi-structured interviews (Phenomenography)Fairly well conducted study. Diverse, strategic sample used, but not stated how many patients approached and declined to participate. Pilot interviews used to test relevance of the questions and validity in relation to aims. However, aims were to examine patients' satisfaction and results related to patients' perceived needs. Researcher was a nurse oncologist, and not clear if this was likely to affect patients' responses. Analysis conducted by three researchers.
Koinberg, 200228 SwedenYES — Intervention group only (PI-nurse vs hospital)54Patients (n = 19) 133 patients randomised to receive interventionPI-nurseBreastSemi-structured interviews (Phenomenography)Same comparative study as above (Koinberg, 200129)
McIlveney, 200430 UKNOPatients (n = 6) HCPs (n = 5, from multidisciplinary team)Nurse (clinic) (3 patients had attended nurse-led follow-up, 3 not yet attended)BreastSemi-structured interviews (Grounded theory)Poorly reported. Interviews conducted and analysed by single researcher — breast cancer nurse specialist who managed nurse-led follow-up clinic from which participants were recruited. No measures to address possibility of bias reported. Patients recruited via advert posted in out-patients; not clear how participants selected or how many refused to participate. Some questions in the interview schedules not reported in results. In some instances a series of quotations were left to ‘speak for themselves’, the author did not summarise or identify the point being made
Moore, 200631 UKYES — Intervention group only (nurse-telephone vs hospital)8Nurses (n = 2 providing nurse-led follow-up) and research coordinators (n = 2)Nurse (telephone)LungSemi-structured interviews, 8 team meetings (Not stated)Characteristics of the included nurses and study coordinators not described, neither was role of study co-coordinators. Interviews conducted fairly early on in the new role so nurses had little experience of it; qualitative interviews conducted 6 months after the specialist nurses started working on the trial with an initial 3-month training period
Pennery, 200032 UKNOPatients (n = 24) Patients selected from clinic list; 24/38 (63%) agreed to participateHospitalBreastSemi-structured interviews (Phenomenography)Poorly reported study. Very little information given about the qualitative approach and process used. Not clear how much of the findings were responses to closed questions (and the actual questions used were not reported). Interviews conducted by lecturer practitioner in breast care and their potential influence during questionnaire design, data collection, and data analysis were not examined
Rozmovits, 200412 UKNOPatients (n = 39)HospitalColorectalIn-depth interviews (Not stated)Patients recruited via GPs, hospital consultant, and support organisations to participate in an interview for the DIPEx project (a database of patients' experiences). Not clear how many patients refused to participate
Sahay, 200033 CanadaNOPatients (n = 20)HospitalColorectalSemi-structured telephone interviews. (Not stated)Interview schedule covered diagnosis, treatment and care (not just follow-up). No rationale given for sample chosen and no information given about the number of patients approached or declined (and reason why). Number of quotes was limited and those presented were not identified. Interview schedule included interesting questions but far more than could be covered in depth in a 1-hour interview. Some questions missed or only touched on briefly in analysis
Wong, 200234 China (Hong Kong)NOPatients (n = 41)HospitalMultiple siteFocus groups — 4–7 participants (Not stated)Aims were to understand patient experiences as well as identify concerns, levels of satisfaction, and sources of dissatisfaction with follow-up care, but results (and how data analysed) focused on patients' concerns. Sample size was not justified. Patients recruited via network of cancer patient self-help groups; sample biased towards a younger and more knowledgeable patient group. Not stated how individual groups selected patients and if any declined to take part. Data appears to have been analysed in rigorous way and credibility of findings are discussed. But insufficient data are presented to support the findings, such as narrative quotes
Wood, 199635 CanadaNOOncologists (n = 9)HospitalMultiple siteSemi-structured interviews (Phenomenography)Fairly well conducted and reported study. Sampling method and size clearly described and justified, but not reported how participants recruited or how study explained to them. Data collection carried out appropriately, but details of interview guide (used to reduce interviewer bias) not reported. Sufficient data presented to support findings, but source of quotes not given.
  • DIPEx = Database of Individual Patient Experiences (now called healthtalkonline: Hospital = conventional consultant-led hospital follow-up. HCPs = healthcare professionals. PI = patient initiated. RCT = randomised controlled trial.