Setting
We developed our study in specific HCOs, namely two cancer centres. HCO 1 is a major cancer centre. In the year of the study (2017), HCO 1 had 414 beds, 14,600 admissions, 6,133 consultations and 3,314 patients were included in the navigation programme. HCO 2 is a cancer centre including a teaching hospital in western France. In the year of the study, HCO 2 had 103 beds, 7,612 admissions and 2,867 consultations.
Research design
We adopted a mixed method comprising two phases. Based on exploratory research involving HCO1 and HCO2 to equal extent, we designed a quantitative approach (Phase 1) using a questionnaire to address the first objective (how patient demands are taken into account by healthcare organisations). With regard to the second objective, namely the content of non-clinical demands, we adopted a qualitative analysis (semi-structured interviews) (Phase 2). We adopted a “demand driven” perspective as opposed to “supply driven” one. We started with the evaluation of the patient demands before defining the organizational response, during both phases. In phase 1, HCO 1 is the main field and HCO 2 the field for confirmatory analysis, whereas in phase 2, HCO 1 is the unique field of exploration.
Phase 1. Quantitative phase: analysis of the importance and consideration of patient demands
In phase 1, we assessed the importance of each demand and the extent to which patients perceived that their demand has been taken into account.
Questionnaire Design
Based on exploratory interviews and observations of interaction of oncology NNs with patients in both HCOs, and our experience as field experts , we collectively identified 27 generic patient demands classified into two types, clinical and non-clinical. For each identified generic demand (except the one relating to “anticipated directive” that could not be evaluated), we formulated one question to evaluate the perceived importance and one question to evaluate how it has been taken into account in the HCO. Consequently, the questionnaire comprised 51 items that assess the importance and consideration of each demand based on an 8-item Likert scale regarding patient characteristics (age, household, income, professional status, SPC (social professional category), education, follow-up period, satisfaction with lifestyle), and ultimately, an open-ended question for potential additional comments (a full version of the questionnaire is appended). Then the questionnaire was pretested on two patients.
Sample
In order to boost the significance of the outcome of the questionnaire, which investigates importance and consideration regardless of condition, we decided to focus this study phase on a specific population: breast cancer patients in a chronic situation. We applied the following inclusion criteria: (i) women aged 18 and over; residing in metropolitan France; (ii) life expectancy of over 6 months confirmed by health professionals, already monitored in the HCO; (iii) participant in one of the innovative follow-up programmes. The following exclusion criteria were applied: (i) non- French speaking patients; (ii) patients who have not yet received cancer treatment (just diagnosed with cancer).
Administration of the questionnaire
On the main site (HCO 1), the selfadministered questionnaire was given to patients attending their consultation from 09/05/2017 to 23/05/2017, by professionals. after checking the inclusion criteria. A ballot box was provided for patients to submit their completed anonymous questionnaires.
On the second site (HCO 2), the questionnaires were given to day hospital, radiology and consultation personnel to be self-administered by patients under the same baseline conditions from 01/06/2017 to 30/09/2017.
Statistical analysis
Descriptive analysis has been carried out for each HCO. Answers relating to importance and consideration were processed as quantitative scores (from 0 to 7 points). Analyses were carried out with R 3.4.3 software.
Phase 2. Qualitative phase: Specification of non-clinical demands
Sampling
In order to specify in depth the type of various non-clinical demands, which were identified and evaluated in the previous phase, we conducted semi-structured interviews with patients presenting all types of cancer in order to understand the common content of these demands under different conditions. We carried out this study in HCO 1, applying the same inclusion and exclusion criteria as in Phase 1, from January to March 2018 (KB) and from June to July 2019 (MW).
Data collection
Potential participants were recruited on site by KB and then by MW in the hall of HCO 1. After introducing the study, an appointment was made, mostly for the same day. Semi structured interviews were conducted in a dedicated room in HCO 1 (duration: 1hour on average). They were based on an interview grid listing the previous phase 1 non-clinical demands, with a focus on challenging aspects for the management of care pathways Discussions remained very open. At times it took a very narrative turn, as the patient started to describe his pathways from the beginning to the day of the interview. The interviewer asked for him/her to give precisions and examples concerning the different needs encountered at each step of the process.
Date analysis
The 36 interviews were recorded and transcribed in full. Data analysis followed an inductive process. This included data familiarisation, open coding and definition of categories of demands. These categories emerged collectively as KB, MW, EM read the interviews. As Each of the three researchers started to code interviews, The codes were discussed during monthly meeting, allowing to distinguish five categories of demands expressed by patients, and 18 types of needs per patient. Data collection ceased when no new categories were identified.
They were analysed by three researchers (KB, EM, and MW).