73 Patients In-depth interviews were in Dutch, took 30-70 minutes, and were audiorecorded. To provide a safe environment, she same interviewer (MDB) met with the patients each time. They could bring a significant other to support them during the interview, for example, when they found it difficult to express themselves. All patients could choose where to meet. Interviews took place at home, in a GP’s or nephrology specialist’s examination room, or in the researcher’s office. STUDY INSTRUMENTS Interview Guides For each study phase, we used an interview guide with open-ended questions based on existing research[44,45]. MDB developed the first drafts. These were adjusted several times, based on discussion between the researchers (MDB, AFW, JV), and an advisory board of patients, HCPs and a representative of the Dutch Kidney Patient Association. Each guide contained questions tailored to the aim of the phase. In later phases, the guides contained probes derived from the results of earlier interviews or FGDs to confirm or validate preliminary results. During the patient interviews, we brought prints of a drawn timeline and written words, for example ‘diet’ or ‘doing activities’, by which patients shared their experiences. Supplementary files 1 and 2 contain the interview guides. Online questionnaires Patients answered ten items of the AAHLS, consisting of 3-point Likert scales[41]. Patients could score 1, 2 or 3 points for each item. We deleted items on empowerment at the community level, because we considered these difficult and irrelevant. Patients were considered to have LHL when they scored a maximum of 85% of the possible AAHLS score or 60% of the critical HL domain score, as a precondition for self-management according to definitions[46]. Additionally, we asked questions on background characteristics, such as education and co-morbidities. HCPs answered questions on their profession, age and gender.
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