In Table 4, a comprehensive overview is presented, delineating the various forms of hospital-provided support for each segment of the SHE-model, as identified and categorized by healthcare professionals and patients (RA/SpA, IBD, or PsO/HS). It should be noted that the types of support discussed in the interviews were explicitly (and logically) related to the specific immunological disorders, but were generalized in the overview (except in cases where the form of support was uniquely applicable to a particular condition). Furthermore, during the discourse, at the initiation of the moderator, additional criteria were elucidated to refine the categorization of supportive care modalities. The study participants delineated between the ‘WHAT’, referring to the specific needs of patients diagnosed with immunological disorders, and the ‘HOW’, the methodological approach of providing the supportive care. This led to the conceptualization of a structured framework that categorizes the types of supportive care offered by healthcare professionals (as highlighted in the bold text in Table 4), alongside the optimal methods tailored to each SHE-segment (as indicated in the non-bolded text in the middle column, and validated by checkmarks in the rightmost column of Table 4).

Legend: bold – mainly focused on ‘WHAT’ is offered, not bold – mainly focused on ‘HOW’ it is offered; numbers in right column refer to segments.

The participants, comprising both healthcare professionals and individual patients, occasionally found it challenging or non-intuitive to allocate specified forms of support to one or multiple segments. In initial assessments, respondents from both cohorts frequently indicated that universally relevant information is required for all segments, however, associations between the manner of information provision and specific patient segments were spontaneously highlighted by some respondents. For instance, offering information upon an individual’s explicit request was generally attributed to patients in segment 1, tailoring and structuring of information were deemed more suitable for patients falling under segment 2 and a more intensive engagement in discussing the available information was perceived as particularly beneficial for patients categorized within segments 3 and 4.

Furthermore, participants proposed that the distribution of information could either be furnished for the individual to review independently at home, or be interactively discussed with the individual during a clinical consultation. Additional variations included the potential segmentation of the information into discrete structured components, allocating more or less time during consultations for discussing this information, and the selection of appropriate communication channels both prior to and during the consultation. These nuanced insights provided respondents with further guidance on how to tailor supportive care interventions across different patient segments.

During the discussions, particularly among healthcare professionals, it became evident that the degree of an individual’s acceptance of their health condition fundamentally influences the preferred strategy for supportive care (the ‘HOW’). Patients who are further along in accepting their medical condition (segment 1 and 2) are more responsive to a reactive care approach, as opposed to those with a lower level of acceptance (segment 3 and 4), who notably benefit from a proactive model of care.

The high-acceptance cohort demonstrated a tendency toward self-initiative and greater autonomy in managing their care needs. They often independently coordinate their healthcare and engage in a more reciprocal relationship with healthcare providers. For these patients, shared decision-making emerges as a logical and effective collaborative care strategy. In contrast, the low-acceptance group, exhibits a lack of initiative, necessitating external guidance for organizing appropriate care and with decision-making. It is imperative to gain insights into their unique care preferences. Utilizing these insights, healthcare professionals are better equipped to offer a curated set of options, facilitating a process we call ‘guided decision-making’.

In addition, during discussions with healthcare professionals, it emerged that patients who are at a lower level of acceptance with regard to their health conditions (segments 3 and 4) experience greater difficulty in integrating their disorder into their life. Consequently, participants emphasized that prior discussing treatment modalities, considerable focus should be allocated to exploring the inherent implications of the disorder for the individual in question. The process surrounding grief, acceptance, and active involvement is universally experienced by patients, irrespective of their specific condition. Yet, this pivotal process often remains inadequately assessed by healthcare professionals, who tend to prioritize the quantifiable aspects of disease activity during consultations. In the process of identifying suitable care for each segment, patients with immunological disorders particularly focused on the nature of ‘contact’ with healthcare professionals (i.e., WHAT is needed?). The unanimous consensus among the respondents was that ‘recognition’ serves as an indispensable element. Recognition fosters the establishment of trust, creating the groundwork for a sustainable, long-term professional relationship. There exists a perpetual need to rely on professionals for varying forms of assistance and support—ranging from treatment and medication to discussions addressing physical and psychological issues. Over 50% of the respondents of the patients groups accentuated that this personalized recognition, which honours their intrinsic identity, facilitates mutual comprehension, thereby enhancing the overall quality of the healthcare they receive. Several illustrative examples were cited by the respondents, stemming from their personal experiences and unique medical conditions. These examples included trust-based consultations with gastroenterologists concerning pregnancy while using medication, re-evaluations of treatment protocols with rheumatologists due to increasing fatigue and diminished occupational performance, and candid discussions with dermatologists about the emotional toll of visible skin lesions, especially during summer months. Across all these scenarios, the principles of ‘recognition’ and ‘trust’ in healthcare professionals emerged as pivotal factors enabling efficacious healthcare provision.

A number of patients emphasized their perception of ‘vulnerability’, attributable to their ‘limited functional capabilities’ and the consequent ‘reliance on external assistance’. Moreover, participants identified an additional layer of ‘vulnerability’ arising from their (perceived) inferior status relative to healthcare providers. This perception was reported to be particularly prominent during engagements with physicians as compared to nurses, thereby impeding patients in talking completely openly during consultations. An essential element for attaining recognition, as underscored predominantly by patients with immunological disorders, centres on the healthcare professional’s capacity for ‘non-judgmental’ listening. Such an approach fosters the essential level of patient-centric attention and establishes listening as a ‘foundational precondition for achieving empathic understanding’.

These dialogues and insights contributed to a nuanced differentiation of healthcare service delivery strategies (HOW to implement this) across the segments (Table 4).

In the context of support facilitated by third parties, healthcare professionals exclusively differentiated among various communication channels employed during the referral process. Specifically, written referrals were predominant in patient segments 1 through 3, while telephonic consultations were reserved for segment 4, as outlined in Table 2. Moreover, healthcare professionals delineated nuanced roles for caregivers of patients afflicted with immunological conditions. In segment 1, caregivers act as ‘equal partners,’ providing affirmation and encouragement, whereas in segment 2 they serve as ‘supporters,’ helping patients adhere to appointments and acting as external commitments. In segment 3, caregivers play the role of ‘empathizers’ who understand and engage in discussions, and in segment 4, they function as ‘motivators’ that facilitate incremental progress. During the consultations, caregivers should be accordingly educated and guided on this aspect.

Lastly, healthcare professionals in particular, noted the limited availability of digital support tools (data collected before COVID-19 pandemic), suggesting a need for their development, possibly on a hospital-wide scale.