Personalising Supportive Healthcare for Immune-Mediated Inflammatory Disorders: A Qualitative Exploration of Patient Needs and Behaviours Based on the Subjective Health Experience Model

Study design

Collaborative discussions were initiated with both healthcare professionals and patients from three different disciplines, namely gastroenterology, rheumatology, and dermatology, at Frisius MC, a prominent regional hospital in the Netherlands.

The study used qualitative methods with ethnographic elements and phenomenological inquiry to gain in-depth insights into the subjective experiences of healthcare professionals and patients [2930]. The study was grounded in the constructivist/interpretivist paradigm, focusing on understanding the complex world of lived experiences from the perspective of those who experience them [31]. This paradigm emphasises the co-construction of data through researcher–participant interactions, acknowledging multiple realities and the importance of context in understanding experiences.

The study was guided by the SHE model, which structures the exploration of supportive care. Both healthcare professionals and patients with an IMID characterised the behaviour, questions, and needs of patients from the different Segments of the SHE model. For the patient groups, discussions also delved into their disease perceptions. With both healthcare professionals and patients, an inventory was drawn up of the types of supportive healthcare offered by the hospital treatment teams, and the approach of this healthcare delivery was subsequently allocated to one of the study’s four predefined Segments.

Participants and procedure

Participants were recruited via purposive and convenience sampling. Healthcare professionals were eligible if they treated patients with IMIDs within rheumatology, gastroenterology, or dermatology. Patients were eligible if they had been treated at Frisius MC within the prior six months.

Three physicians, one from each discipline, undertook the recruitment process, verbally inviting healthcare professionals and extending email invitations to patient participants. Participation was voluntary, and no compensatory incentives were disbursed. All participants gave written informed consent.

Focus groups were held with professional teams from all three disciplines, as well as with patients diagnosed with rheumatoid arthritis/spondyloarthritis and IBD (Crohn’s disease/ulcerative colitis) at Frisius MC. Due to COVID-19, patients with psoriasis/hidradenitis suppurativa were interviewed individually via Microsoft Teams. Sessions were moderated by an experienced, independent qualitative researcher.

Guided discussion protocols

The semi-structured discussions followed a predefined checklist tailored to explore behaviours, questions, and supportive care needs across the four SHE Segments. Sessions began with an explanation of the study purpose and concluded with next steps. Segment descriptions developed with healthcare professionals were used to guide discussions with patients. Interviews lasted around 30 minutes; group discussions around 2 hours. Tables 1 and 2 outline the interview structure and outputs.

Analytical approach

Interview transcripts were systematically analysed using the matrix method proposed by Groenland [32]. A matrix was devised, with rows for healthcare professionals and patients, and columns representing specific interview questions. Direct participant responses were transcribed and populated in this matrix.

In a subsequent phase, a thematic matrix was established to categorise and consolidate themes across interview questions. Through tallying, predominant themes were identified, highlighting variances and commonalities within and between participant groups. The analysis was conducted manually.

Data saturation was considered reached when consecutive interviews yielded no new themes and when variations within existing themes were fully explored across all participant groups.

To ensure accuracy and credibility, the results were presented to a selection of healthcare professionals for member checking, accommodating their feedback to confirm correct interpretation. Additionally, the methods section of this article is reported according to the Standards for Reporting Qualitative Research guidelines [33].

This analysis provided detailed insights into the behaviours, questions, and needs specific to patients with IMIDs. These insights guided how tailored care strategies provided by the hospital, could be effectively distributed across the Segments. The matrix analysis facilitated the display, interpretation, and evaluation of findings, as suggested by Averill [34], enhancing the development of evidence in qualitative research.

Participant characteristics

Nineteen healthcare professionals participated: eight from the RA/SpA team (three physicians, five nurses), six from the IBD team (one physician, five nurses), and five from the PsO/HS team (one physician, four nurses). Gender, age, and years of professional experience varied.

Eighteen patients took part: six with RA/SpA (4 RA, 2 SpA), seven with IBD (three Crohn’s disease, four ulcerative colitis), and five with PsO/HS (three PsO, two HS). Ten were female and eight male. Ages ranged from 22 to 74 years, and disease duration from 2 to 50 years.

Behavioural patterns, questions, and needs

The four Segments of the SHE model, based on levels of acceptance and perceived control, structured the findings. Segment 1 reflects high acceptance and high control; Segment 2, high acceptance and low control; Segment 3, low acceptance and high control; and Segment 4, low acceptance and low control. Each Segment was further analysed using three categories: cognition and behaviour, questions and dilemmas, and specific support needs. These categories were derived from semi-structured interviews and group discussions with healthcare professionals and patients diagnosed with an IMID (RA/SpA, IBD, or PsO/HS). Due to substantial thematic overlap across participant groups, the results were consolidated into a single table. Table 3 presents the combined Segment characteristics. Lines indicate relationships between categories within each Segment, signifying thematic interdependence.

In Segment 1 (high acceptance, high control), patients are defined by their ability to cope with the consequences of chronic inflammatory diseases. They display a high degree of openness when discussing their conditions with others and handle comments in a thoughtful manner. Overall, they strive to integrate the condition into daily life and engage in activities matching their capabilities. A key aspect of their approach is an intrinsic motivation to remain well-informed. They proactively seek new information, often bringing critical questions to consultations. This Segment prefers active involvement in decisions about treatment and support, identifying with the concept of self-management, and seeks external validation from healthcare professionals and loved ones to affirm their adaptive approach.

In Segment 2 (high acceptance, low control), patients exhibit a positive attitude towards their condition and actively work to optimise well-being. Like those in Segment 1, they integrate their conditions and symptoms into daily life. However, they often lack a comprehensive understanding of available interventions and more frequently question whether they are taking the right steps to improve QoL. Providing structured support and guidance is essential to help these patients manage their conditions effectively.

Segment 3 (low acceptance, high control) includes patients who struggle to accept their disease and adapt to their condition. This Segment often consists of patients recently diagnosed or whose circumstances have recently deteriorated. They may seek support from loved ones but also experience feelings of shame. They have many questions about managing their altered situation, both personally and socially. Immediate assistance in coping with the condition and self-perception, aimed at regaining balance, is crucial.

Segment 4 (low acceptance, low control) describes patients who have lost hope and see no way to cope with the impact of their disease on QoL. Pervasive pain, fatigue, and other symptoms are significant impediments. They tend to withdraw from their social environment, driven by feelings of helplessness and shame. Managing comments, whether well-intentioned or not, is challenging, leading to isolation, misunderstanding, and melancholy. Their passive disposition makes motivating them towards proactive measures difficult. Central to their concerns is the question of ‘what’s next?’, which becomes more pressing as they face numerous lifestyle guidelines. Incremental progress through small tasks and consistent guidance may offer a path forward. Engaging in activities and seeing results may help restore a sense of purpose.

Overall, the Segment characteristics across the six IMIDs displayed considerable overlap. Despite apparent distinctions between these conditions, notable similarities exist in patients’ challenges, resulting in similar behaviours, questions, and needs. For example, all patients consistently mentioned pain, while fatigue was reported by both RA/SpA and IBD patients. Both symptoms greatly impact daily activities. Furthermore, patients from all disorders struggle with shame, though its manifestation varies—for example, reluctance to ask for help (RA/SpA); embarrassment due to frequent, urgent toilet use and faecal incontinence (IBD); and feeling filthy and perceived as such by others (PsO/HS).

Tailored care

In Table 4, a comprehensive overview outlines the various forms of hospital-provided support for each Segment of the SHE model, as identified and categorised by healthcare professionals and patients (RA/SpA, IBD, and PsO/HS). The types of support discussed in the interviews were explicitly related to specific IMIDs but are generalised in the overview, except where support was uniquely applicable to a particular condition. During the discussions, and prompted by the moderator, additional criteria were defined to refine the categorisation of supportive care modalities. Participants distinguished between the what—specific types of supportive healthcare—and the how—approach of healthcare delivery. This distinction led to the development of a structured framework that lists the types of supportive care offered by healthcare professionals (bold text in Table 4) alongside the methods tailored to each SHE Segment (non-bolded text in the middle column, validated by checkmarks in the rightmost column).

The participants, comprising healthcare professionals and patients, sometimes found it challenging or non-intuitive to allocate specific forms of support to a Segment. Initially, both groups often stated that universally relevant information is needed across Segments. However, some participants noted spontaneously that the method of delivery could vary. For example, providing information on explicit request was linked to Segment 1, while tailoring and structuring information was considered more suitable for Segment 2. More intensive engagement in discussing information was viewed as particularly beneficial for Segments 3 and 4.

Participants suggested that information could be for independent review at home or interactively discussed during consultations. Variations included structuring content, adjusting consultation time, and selecting appropriate communication channels before and during visits. These insights offered practical guidance for tailoring supportive care across Segments.

During discussions, particularly among healthcare professionals, it became clear that an individual’s acceptance of their health condition strongly influences the preferred supportive care strategy (how). Patients with higher acceptance (Segments 1 and 2) respond well to reactive care, often showing initiative and autonomy. Shared decision-making works effectively for this group. Conversely, those with lower acceptance (Segments 3 and 4) exhibits a lack of initiative and require proactive support and external guidance for organising care and decision-making, benefitting from ‘guided decision-making’ across disciplines and care levels., requiring external guidance for organising appropriate care and decision-making.

Healthcare professionals noted that patients in Segments 3 and 4 struggle more to integrate their condition into their lives. They emphasised the importance of focusing on the inherent implications of the disorder for the individual before discussing treatment modalities. The process of grief, acceptance, and active involvement is universally experienced by patients, regardless of their specific condition. Yet, this crucial process is often inadequately addressed by healthcare professionals, who tend to prioritise quantifiable aspects of disease activity during consultations.

When identifying suitable care for each Segment, patients emphasised the importance of ‘contact’ with healthcare professionals. The unanimous consensus among patients was that ‘recognition’ is essential for trust and long-term professional relationships. This need spanned treatment, medication, and physical and psychological support. Over half of patient respondents stressed that personalised recognition enhances mutual understanding and care quality.

Several illustrative examples from respondents highlighted the importance of trust-based consultations, including gastroenterology consultations about pregnancy and medication, rheumatology re-evaluations due to fatigue and reduced work capacity, and dermatology discussions on the emotional toll of visible skin lesions during summer. Across these scenarios, ‘recognition’ and ‘trust’ in healthcare professionals were pivotal in enabling effective healthcare provision.

Some patients described a sense of ‘vulnerability,’ especially with physicians, which could hinder open communication. Non-judgemental listening was seen as essential for patient-centred care and empathic understanding.

These findings informed a nuanced differentiation of care strategies across Segments (Table 4). In third-party support, healthcare professionals varied communication channels: written referrals were common in Segments 1–3, while telephone contact was reserved for Segment 4. Additionally, healthcare professionals delineated nuanced roles for caregivers of patients with IMIDs. 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 ‘empathisers’ who understand and engage in discussions, and in Segment 4, they function as ‘motivators’ facilitating incremental progress. Healthcare professionals should educate and guide caregivers accordingly during consultations.

Lastly, healthcare professionals noted the limited availability of digital support tools (data collected before the COVID-19 pandemic), suggesting a need for their development, ideally at a hospital-wide level.

As with patient characteristics, supportive care options across the six IMIDs showed almost complete overlap. Minor differences included the dermatology department rarely referring patients to rehabilitation, a practice more common in other specialties.

Strengths and Limitations

A key strength of this study is its ecological validity, achieved through involving both healthcare professionals (physicians and nurses), and patients from six IMIDs across three disciplines. The resulting framework, based on behaviour, questions, and healthcare needs, offers a valuable resource for both inspiration and evaluation in designing and assessing supportive care.

Nonetheless, the study exhibits some limitations. The evaluation was confined to services provided by three treatment teams in a single peripheral healthcare institution. This single-centre design might limit generalisation to other settings. Similarly, initiatives not examined here may better meet the healthcare needs of this patient population. No triangulation with clinical or observational data was undertaken, as the study focused on participants’ subjective experiences and perceptions, which are not always directly observable or documented in clinical records. The study did not examine the qualitative aspects of the support provided, which may influence perceived care quality.

The perceived ‘vulnerability’ of patients, due to their sense of inferiority to healthcare providers, may have inhibited open dialogue during consultations and influenced their responses during the study’s interviews. Member checking was conducted only with healthcare professionals. Although planned with patients, follow-up attempts were unsuccessful due to the time elapsed after data collection. As a result, patient perspectives could not be directly validated, which may have introduced a higher risk of researcher bias or misrepresentation. Nonetheless, patient data were analysed inductively and discussed within a multidisciplinary research team to minimise bias.

Practical implications

Implementation of this framework may face barriers, such as workforce time constraints and uneven digital infrastructure; however, its potential to enhance coordination, role clarity, and continuity of care within integrated healthcare systems is considerable. Leveraging this potential is particularly relevant given the significant overlap between IMIDs, which supports the creation of a cross-disciplinary supportive care plan. Such a plan could include sharing resources and referral networks, establishing interdisciplinary support teams for patients with overlapping conditions, developing shared digital platforms, organising joint information sessions for new patients, and forming multidisciplinary therapy groups. This level of collaboration has the potential to improve both care quality and treatment efficiency.

Operationalising the SHE model demonstrates that support can be differentiated into appropriate care in a relatively straightforward way. Integrating the model into hospital electronic health records would enable tailored guidance based on patients’ acceptance and control levels, supported by real-time monitoring and periodic reassessment. The electronic health records should include a list of available support options and record which patients receive which forms of support, allowing ongoing evaluation. Clear dashboards for both professionals and patients could help optimise care delivery, strengthen patients’ perception of health, and enhance overall quality of life. This forms the foundation for efficient, appropriate care. In addition to its clinical utility, the framework can also inform the work of professionals in coordinating patients with broader health and community resources. By segmenting patients’ needs, roles such as health coaches and link workers could more effectively connect individuals with suitable lifestyle, self-management, and social support services.

Further development and implementation of digital tools are essential. While the model’s validity and value have been demonstrated in manual application, digital integration is needed to ensure consistency and maximise impact [44]. Hospital innovation departments could lead this process across multiple specialties.

Although developed and tested in a clinical care setting, the benefits of tailored care also extend to clinical research. Clinical studies, while more controlled, rely on collaboration between healthcare professionals and patients to achieve successful outcomes. Yet, early drop-out rates average 25%, with nearly 70% of protocol deviations linked to non-adherence [45]. These challenges extend timelines, increase costs, reduce efficacy, and create missing data. Applying the SHE model to segment and tailor support could improve adherence, reduce drop-out, and enhance protocol compliance—making studies more efficient and cost-effective.

Overall, the structured application of the SHE model offers a practical tool for personalised support across disciplines. By guiding the allocation of supportive care, it can enhance coordination, clarify provider roles, and improve continuity within integrated care systems.

Future Research

Future research should explore a broader range of clinical domains to identify disease-specific differences or trends across diverse healthcare settings and to demonstrate that the insights offered by the SHE profiles into support needs (what and how) can assist healthcare providers in determining the most effective way to support patients, regardless of discipline or level of care.

Research should also examine the dynamic nature of disease processes, including condition progression and treatment, and how patient behaviour and needs evolve over time, along with the implications for healthcare provision. Evaluating the effectiveness of healthcare interventions is vital, identifying which approaches are most effective, which are less so, and what modifications could improve outcomes.

Furthermore, patients with new-onset chronic IMIDs typically undergo processes of sorrow, understanding, acceptance, and lifestyle changes. Ultimately, using a general approach, the SHE model could facilitate adequate supportive treatment for patients grouped by segmentation, irrespective of their IMID type, and, in the longer term, its integration into care coordination workflows or digital care planning systems could further enhance both efficiency and patient experience.