HPR PERSPECTIVES OF PATIENTS WITH INFLAMMATORY ARTHRITIS AND THEIR PARTNERS ON PARTNER PARTICIPATION IN RHEUMATOLOGY CONSULTATIONS: A (DANISH) QUALITATIVE STUDY

Background:
Partners to patients with inflammatory arthritis (IA), such as rheumatoid arthritis, psoriatic arthritis and spondyloarthritis need information about the disease, treatment, symptoms, and self-management strategies to provide adequate support of the patient and manage their role as a partner. Partner participation in rheumatology consultations could potentially facilitate this, but it remains unexplored.
Objectives:
To explore the perspectives of patients with IA and their partners on partner participation in rheumatology consultations.
Methods:
Adult patients with IA and their adult partners were recruited through patient organizations, Facebook groups, and rheumatology departments at two regions in Denmark. Two interview guides (one for patients and one for partners) were developed in collaboration with five couples working as patient research partners, focusing on patients' and partners' experience with partner participation in consultations, the role of partners, information need and how consultations could support partners. Data were collected through focus groups (FGs) and semistructured individual interviews due to some participants struggling to attend FGs because of their work, having small children or physical limitations. Hereby individual interviews ensured larger diversity in participants. The interview guides consisted of statements used to spark discussion amongst participants to investigate differences and commonalities in participants' experiences and perspectives during the FGs and open-ended-questions was used to investigate participants personal experience and perspectives during individual interviews. Patients and partners were informed that their participation was voluntary and confidential. FGs and interviews were digitally recorded, transcribed verbatim, and analyzed using reflexive thematic analysis [1] in NVivo analysis software (Lumivero NVivo version 15.0.0.12). Two researchers familiarized themselves with the data and developed preliminary deductive codes to guide coding of the large data material. Thereafter one researcher coded the material inductively and formulated the initial themes. Patient and partner data was analyzed separately.
Results:
15 individual interviews and 5 FGs was conducted between August-November 2023 with 19 patients with IA and 11 of their partners. Table 1 summarizes the characteristics of the participants. The analysis of the patient data resulted in three themes: 1) My partners´ participation - an unintentional vs. purposeful decision. Patients' decision to include or exclude their partner in consultations was often unintentional as patients were unaware of the possibility of bringing partners. Despite this some patients were clear on their reasons for including or excluding partners from their consultations. These patients experienced partner participation as beneficial if the partner did not interfere with the patient and physician relationship. 2) Addressing my own needs before my partner's. Patients addressed their own unmet needs in relation to consultations, prior to their partner's need. Patients desired more individualized consultations, addressing lifestyle guidance, self-management support and family-related issues which some patients also believed were more relevant topics for their partner to participate in. 3) Enhancing engagement and collaboration for partners in consultations. Patients thought meaningful partner participation required improved possibilities for patients and partners engagement and collaborations with Health Professionals in Rheumatology (HPR) during consultations. The analysis of partner's data resulted in three themes: 1) Participation is based on my partner's needs for support and secondary on my needs as partner. Partners participated in consultations mainly to support patients, offering practical help or emotional reassurance. However, partners also described their own needs to participate. Participating in consultations helped partners to understand the disease, strengthened empathy towards the patients, and improved trust and coordination with patients. Partners who were intentionally excluded from the patient's consultations found this frustrating. 2) Consultations' content or other initiatives that could improve support of partners. Partners suggested consultations could better support them by addressing family life, intimacy, and future planning. They discussed the need to meet other partners, and their own psychological needs but were also unsure of what should be the responsibility of HPR, although they agreed on wanting advice on where they could get further support. 3) Creating a partner welcoming consultation. Partners described negative experiences with participating when they felt unwelcome or invisible to HPR. They believed that creating a welcoming environment through simple changes such as allowing the partners to feel welcome in departments, extending invitations to participate and providing informational materials could significantly enhance their participation and support their needs.
Conclusion:
Patients and partners often lack the information needed to make informed decisions about partner participation. The results suggest that HPRs should consider proactively facilitating partner involvement by empowering patients and partners to decide on their preferred level of participation. Furthermore, it may be beneficial if consultations could address not only joint assessments and medication but also broader issues, such as family life and self-management, tailored to the individual couple's needs.