2.2.1. Procedure for the Patient Intervention

Step 2: Logic Model of Change

Derived from step 1, the research team formulated preliminary objectives and determinants to intervene in self-management of patients with LHL. Next, an advisory board, consisting of two CKD patients, a medical doctor, a nurse and two researchers provided feedback in a 2-h meeting on these objectives and determinants. With the mixed methods below, we further checked and improved the objectives and determinants to be addressed, and outcomes to be aimed at, to include in a final logic model of change (see Section 2.2.3).

Firstly, we interviewed CKD patients with LHL (n = 19) for about 1.5 h each, directly after a consultation with their HCP. We asked open-ended questions on their experiences with self-management and during the consultation to identify new objectives and determinants. Secondly, we asked them to respond to quotations that reflected the preliminary objectives and determinants. After each meeting, we filled in a standardized form to note important experiences, based on rehearsals of the audio recordings of the interview. Examples of the used quotations and the form are in Supplementary Files S2 and S3.

Step 3: Program design

To start developing the patient intervention, we performed desk research. This was intended to retrieve useful theories that could help to organize the objectives and determinants into intervention components, and to identify intervention methods and strategies that fitted our objectives and determinants.

Next, we asked the same patients in step 2 to comment on the identified frequently used intervention methods, such as individual and group counselling, or digital, written and visual communication. During this feedback session, we also showed patients real examples of strategies, and asked for feedback and preferences. These strategies are normally used by several nephrology clinics, the Dutch Kidney Foundation and the Dutch Kidney Patient Association.

Step 4: Program production

In the fourth step, we produced a first draft of the patient intervention. During the production, we linked the final objectives and determinants from step 2 with the strategies from step 3 and developed the content of each component of the intervention. Below we provide a description of the production of this program.

Firstly, a draft version of the intervention was fully designed by the research team in cooperation with a professional graphic designer. Secondly, the advisory board provided feedback on the draft version in a 2-h workshop, and in an additional round of written comments. Thirdly, we improved the draft intervention and prepared it for the evaluation below.

Step 5: Evaluation

The fifth, final step consisted of pilot tests to evaluate the intervention’s adoption and barriers for future implementation. This was done by determining its usability, usefulness, comprehensibility, and fitness for needs.

Firstly, CKD patients with LHL (n = 4) used the intervention independently or with the help of a significant other. Secondly, in an interview and evaluation questionnaire, we asked their opinion on the intervention. The recordings of the interviews were analyzed afterwards. Thirdly, independent raters, a researcher from our department and two students in nursing filled in checklists of the Health Literacy Assessment Tool for Identifying Facilitating Factors and Barriers to Information, Care, and Services [36] to check the writing style, organization and design of the patient intervention.