Table 1 The semi-structured workshops

Aim: To obtain inspiration to complete the development of the complex self-management, and to ensure that the intervention was in accordance with newly diagnosed patients’ needs, based on available evidence and clinicians’ experience. Also, that the intervention would be realistic and feasible in clinical practice.

Method: Initially, we planned three large workshops, but, due to the COVID-19 pandemic (2020-), we conducted seven smaller workshops. Here, consensus work was conducted with HPRs who had experience in providing care for patients with IA. The semi-structured workshops covered the following topics: a) discussions of the preliminary intervention b) feedback on HPR competencies needed and c) a brainstorming regarding possible outcomes.

Recruitment: The recruitment of participants for the various workshops was based on purposive sampling. We contacted relevant clinical managers who were asked to identify doctors and nurses of both genders with a variety of experiences in rheumatology. We recruited participants for the primary sector workshop by contacting the management of a few municipalities. Patients for participation in the workshops were recruited from our user panel.

Workshop attendees: Two patients (eight were invited but cancelled because of the Covid-19 pandemic), three occupational therapists, six physiotherapists, 10 medical doctors, one psychologist, one social worker, and 17 registered rheumatology nurses (RRN). We required a minimum of two years of rheumatology experience.

Conducting workshops:

In advance: Information material was sent to participants in the workshops to prepare them for the discussions. The information material included a short description of the theoretical framework of self-management

On the day: The initial discussion concerned the newly diagnosed patients’ characteristics and their concerns and needs. This was followed by a discussion of the preliminary intervention and of HPR’s need for competence development. Finally, the participants were asked which changes they would like to see in the patients as a result of the intervention. Every topic for discussion began with a short introduction and a few minutes for individual reflection and note-taking. Thereafter, the discussions were guided by open-ended questions and in-depth questions by an experienced moderator (BAE)

Example of questions: Which existing treatments and offers (in addition to the pharmacological one) can support the newly diagnosed? Which psychosocial problems do newly diagnosed patients experience? Which challenges are present when providing/receiving support? What could be the best set-up for providing/receiving support? (Interview guide is available in supplementary material Table C).

Data collection and analysis: The workshops were audio-recorded after taking informed consent. All data were collected and held in accordance with data protection guidelines. All data material was transcribed, coded, and categorized using the data management system NVIVO 12. Data was analyzed together with notes from the participants using a thematic analysis approach inspired by Braun and Clarke’s six-step method [69].

Results from the workshops:

Topic a) Discussions of the preliminary intervention.

In the workshop, several components in the preliminary intervention were confirmed as relevant and new components arose. Enhancement of self-efficacy in face-to-face sessions with a focus on personal interaction and dialogue based on personal challenges was confirmed along with expectation alignment about treatment and consequences of the diagnosis.

Time was a recurring theme in the workshops but in different contexts. Sufficient time for conversation in each session was highlighted as well as the duration of the complete intervention. An intervention more than six months was preferred.

The element in the frame of the intervention that caused the most discussion was whether the intervention should include group sessions. Both patients and HPRs mentioned that patients need to talk to others, preferably someone who has had the disease for a longer time. Some also argued that the newly diagnosed were not ready for group sessions as they were too emotionally distressed. The participants also discussed if the groups should be stratified by gender, age, ethnicity, level of education, and symptoms, or if they should be thoroughly mixed.

Acceptance, crisis, hope, and existential issues were not very explicitly described in the preliminary intervention. However, these emotional reactions were mentioned several times in the workshops. Especially the patients expressed that acceptance is a prerequisite for a better quality of life (Results are presented in supplementary material, Tables A and B).

Topic b) Feedback on HPRs competences

HPRs delivering the intervention should hold the following competencies: knowledge in medical, social, and emotional disease management, as well as competencies in communication and questioning techniques and how to be a good facilitator.

Topic c) Brainstorm regarding possible outcomes

The outcomes suggested in the workshops were: compliance, fatigue, pain, morning stiffness, physical function, health-related quality of life, anxiety, and depression, workability, physical activity, health belief, illness perception, and self-efficacy.