Patients perspectives on an interprofessional care model in healthcare for patients with immune-mediated inflammatory diseases: A qualitative study

Background

IMIDs lead to signs and symptoms in various organ systems, including the skin, joints and gastrointestinal system, and general symptoms such as fatigue, affecting and challenging quality of life.⁶

Patients with IMIDs deal with various challenges in their daily lives, including psychological disorders and socioeconomic issues.

Psychological disorders like depression and anxiety have been reported as typical for all diseases. A French cohort of 1185 IBD (inflammatory bowel disease) patients showed that half of the patients reported poor quality of life, severe fatigue, and/or depression. Approximately one-third of patients reported anxiety.⁷ Additionally, studies demonstrate that psoriasis and HS patients face reduced health-related quality of life, heightened emotional issues like depression and anxiety, and endure stigmatisation, shame, and embarrassment.^8,9 These challenges may lead to social avoidance, exacerbating anxiety and depressive symptoms.⁹ Instances of depression and anxiety have also been reported as prevalent in studies among PsA and AxSpa patients and explained as the results of concurrent experiences of pain and living with a functional disability.^10,11

Socioeconomic factors have also been described as posing a challenge to IMIDs patients as physical limitations and emotional distress often affect their job performance, leading to loss of productivity at work and a higher rate of absence compared to healthy individuals, in turn resulting in substantial indirect expenses and a strained economy.^7,10,12,13

Cardiometabolic diseases are common in all the prior-mentioned IMIDs, as chronic systemic low-grade inflammation facilitates inflammatory activity in the vascular wall, which is implicated in the development of premature atherosclerosis, resulting in an increased risk of cardiovascular disease.^14–18 A focus on preventing obesity, type II diabetes, hypertension, and dyslipidemia is essential to prevent the development of metabolic syndromes that increase the expansion of atherosclerosis for all the mentioned IMIDs.^{14,16,18–20}

Therefore, several studies advocate for approaches that include a team of professionals focusing on person-centred care when the goal is to deliver high-quality care.^2,9,10,21,22

The concept of patient-centred care has seen various interpretations. However, these interpretations generally agree that patient-centred care involves trajectories in which patients are stimulated to participate actively in their health and treatment. The goal is to improve patient experiences and advance more holistic care (see, e.g., Refs. 27, 28). Moreover, the concept entails respect and dignity for the entire person and its needs while promoting self-management.^23,24 We follow Nikiphorou et al.’s conception of self-management as a process allowing patients to take an active role in the conditions related to their diseases and take part in the decisions during the patient journey.²⁵ Self-management involves both patients and healthcare professionals. From the patient’s perspective, it entails actively managing life focusing on health and well-being. Developing self-management skills encourages patients to collaborate with healthcare professionals, enabling them to access the correct information, participate in care decisions, and adapt throughout their patient journey.^24,25 For healthcare professionals, self-management support is an aiding process that helps patients learn to make daily decisions, enhancing health-related behaviours and outcomes. This process includes three sets of tasks: medical management of the condition (condition management), carrying out normal relationships and activities (role management), and managing the emotional impact of disease (emotional management).²⁶

Most studies in the field refer to multidisciplinary approaches, bringing together doctors from various specialised clinics to optimise medical treatment. These approaches operate without a cadenced and organised collaboration, including meeting structures where symptoms are discussed interprofessional and treatment trajectories departing in patient-centred care amenable to the patient’s needs are coordinated among the professionals.^1,2,21,27,28 Thus, the recommendation is to prioritise interprofessional team interventions, emphasising collaborative practices involving responsibility, coordination, communication, trust, and respect in managing patients with chronic diseases for enhanced and suitable patient care.^5,29 However, existing studies are scarce. Urgent calls are made for more empirical research on interprofessional, patient-centred approaches for IMIDs, aiming to document their implications for IMIDs patients.

This study is part of a Danish interprofessional intervention study tailored to patients with IMIDs, where patients are offered an interprofessional treatment and care plan and the opportunity to improve self-management skills/competence in everyday life with IMIDs.⁶ A deeper understanding of the different parts of the intervention can contribute to the future development of IMIDs interventions. Therefore, the aim was to explore patients’ experience of participation in the intervention.

Setting

The intervention examined in this study the collaborative approach adopted by an interdisciplinary team. This approach in the NCAS intervention is characterized by a holistic and interdisciplinary organization of diagnosis, management, and care for patients suffering from complex IMIDs. The team comprises dermatologists, gastroenterologists, rheumatologists, nurses, psychologists, dietitians, social workers, and administrative staff, with physiotherapists contributing as required. Treatment plans are tailored to each patient, considering clinical data, biomarkers, phenotypic information, and psychosocial factors. Consultations are conducted in a collaborative manner, ensuring seamless coordination across different specialties. Medical management adheres to established local, national, and international guidelines. Therefore, the focus of the intervention is on the integrated and coordinated care model rather than on specific pharmaceutical interventions.

Developing an interprofessional combined clinic provided the opportunity to focus on a cross-disciplinary approach to optimise treatment plans for all diseases in the same clinic with a broader aspect on quality of life, mental health, dietary advice, socioeconomic factors, and self-management support.

In the consultations, the nurses used the Goal-based-shared-decision-making model³⁰ in collaboration with the patients when making the psycho-social anamnesis at the first visit. The nurse supported patients in defining up to three goals to promote a higher level of self-management. These goals facilitated who should be a part of the patient’s interprofessional team to manage their daily life with IMIDs.

Participants

The participants referred to NCAS had at least two IMIDs, and most of them had several comorbidities ( Table 1). Given that IMIDs are chronic conditions, their comorbidities are associated conditions that need to be treated either in primary care or in another specialised clinic. Depending on the number of diseases, this leaves the participant with a daily life characterised by many contacts with the healthcare system, which, in addition to the burden of symptoms, also hinders their functional and fundamental abilities.

In the period from 2020-2021, we included participants in the interviews.

Data collection

Data were collected by a semi-structured interview with a duration from 30 min. to 60 min. The interview guide included questions about their daily living with IMIDs and questions concerning their experiences in their patient journey with IMIDs. The interview guide was developed stepwise. The first two questions were:

The interviews were kept broad with open questions about life with a chronic condition. That gave us an insight into how complex managing life can be when living with more than one disease. After the first two interviews, we revised the interview guide to include questions concerning aspects of living with IMIDs: quality of life, work life, and social life. Moreover, we added questions to elicit the experiences of patients having gone through a trajectory at NCAS.

Data analysis

The interviews were recorded and transcribed by a working group consisting of a sociologist/social worker and two nurses. We used the qualitative software program NVivo^TM31 to organise and manage the data. Inspired by Braun and Clarke,³² we followed their six-step method to analyse data with a reflective thematic analysis approach. The first and last authors conducted the data analysis supported by discussions with the research group. We started with multiple readings to familiarise ourselves with the data. During this process, we divided the transcribed interviews according to interesting features. Having discussed these features with the group, we then developed codes (“The burden of illness & social life”, “Clinical experiences”, and “Challenges in the intervention”), each containing several subcodes. Last and first authors conducted an independent test coding to ensure consistency in the understanding of the codes and the material. We then coded the remaining material. Having arranged data into meaningful groups, we sorted our codes into potential themes. Next, we reviewed and refined our proposed themes, carefully checking if our themes worked in terms of the coded extracts and the entire data set. At this stage we found overlaps between some of our themes, so these were collapsed. Finally, we moved on to defining and naming the themes. Here, we focused on identifying the core of each theme, naming the themes and sub‐themes accordingly. We identified three overarching themes: Bringing well-known actors into a new concept, Expanding interprofessional care and Bridging interprofessional care, and several subthemes. Finally, we selected concise samples that captured the core of themes and subthemes.

Bringing well-known actors into a new concept

Participants described the intervention as a novel space where the familiar healthcare system was restructured. Specialists were assembled in the same clinic within an interprofessional team, eliminating the need for participants to navigate the healthcare system to meet individual specialists. For example, one participant explained how bringing doctors together was essential because it provided continuity and safety, not being the person responsible for passing on vital information:

Another participant emphasised the essential of the shared exchange of information between medical professionals regarding treatment possibilities:

Several participants shared experiences from their past healthcare journeys, illustrating how the new interprofessional collaboration, with multiple specialised doctors present in their consultations, contrasted with prior experiences of being confined in a silo system. A system, though highly specialised, that could only address one specific focus at a time. Most participants noted that previous trajectories did not understand the association between diseases, resulting in fragmented treatment experiences. One participant uttered:

One participant used a car service metaphor to compare the differences between the new and the traditional care. She stressed that interprofessional consultations ensured a shared understanding of her disease and relieved the burden of remembering and presenting intricate medical details when transitioning between departments, a task she had struggled with previously:

Expanding interprofessional care

In interviews, participants highlighted specialised support from psychologists, social workers, and dieticians in the intervention, addressing everyday life challenges impacted by health conditions and focusing on the broad issues associated with IMIDs that permeated participants’ whole lives.

Work-life-balance

For many, a job was considered an integral part of a normal life. However, the impact of their disease often added pressure to maintaining this normalcy, necessitating constant management. For instance, one participant with Crohn’s disease described the stress on his work routine, needing to balance physical work and travel while always being in proximity to a toilet due to sudden needs:

Participants tried to endure and adapt to challenging conditions, viewing having a job as fundamental financially and existentially. In interviews, they emphasised the assistance of a social worker in the intervention, aiding their understanding of legislative options, such as the possibility of a “§56 deal,” enabling them to work in conditions accommodating their disease (i.e., reduced work hours). One participant described the help she had received like this:

To the participants, having a social worker supported them by providing help, guidance, and direction regarding their position in the labour market, something perceived as a crucial component of their whole lives.

Social and existential management of disease

Among participants, the significance of being introduced to counselling by a psychologist was highlighted, as it assisted them in addressing the numerous social and existential challenges accompanying life with a disease. For instance, one participant shared that the psychologist’s support helped her navigate the pervasive impact of the disease on every aspect of her being, alleviating feelings of being lost and in darkness:

Several participants described their trajectory with the psychologist as something to overcome due to the perceived vulnerability and stigma associated with seeking psychological support. (“It’s a taboo subject” (patient interview)). Overcoming this hurdle proved significant as the psychologist taught participants to discuss their disease openly with friends, relatives, and acquaintances. Participants highlighted their family’s struggles with the disease. One participant shared difficulty accepting feelings of disempowerment, particularly regarding her children. Sessions with the psychologist in the intervention lead to feelings of self-management and of being capable of being a better parent:

Most participants emphasised the importance of the psychologist’s proper understanding of the disease to facilitate discussions and improve their conditions during interprofessional conferences. One participant compared the psychologist he was seeing now to the one he had seen in the intervention:

Participants engaged in group sessions with a psychologist, but experiences varied. Some found group discussions crucial for expressing and sharing individual disease problems and fostering mental well-being through mutual support. However, others perceived the group format as conflicting with their privacy, leading them to leave the sessions.

Nutrition: the role in overall well-being with illness

Several participants underlined how seeing a dietitian helped them understand and cope with their disease, its dietary causality, and the influence this could have on life outside the hospital. Patients found collaboration with the dietician provided new strategies for managing elevated cholesterol and early-stage type 2 diabetes. Most reported gaining insights that lead to improved dietary habits, contributing to increased energy, stable blood sugar levels, and overall health. They also appreciated the guidance on weight loss to prevent comorbidities and symptom exacerbation.

A woman with psoriasis and psoriatic arthritis explained how she had learned about the complexity of balancing between low energy and acknowledging the effect of proper nutrition:

Several participants faced challenges adhering to diet plans due to the high energy and mental capacity demands, which were often lacking when dealing with chronic inflammatory diseases. Despite trying various diets, participants frequently reverted to previous habits after a short period.

Participants noted that the dietician in the intervention simplified diets and emphasised adapting lifestyle habits, resulting in significant positive changes for them. One participant said:

During treatment with the dietician, participants found that proper nutrition provided increased energy, aiding in managing their condition. They learned preventive measures and overall wellness strategies, enhancing their ability to manage comorbidities.

Bridging interprofessional care

Bringing together the interprofessional team of well-established and new professions and keeping it organised was seen by the participants as salient for a patient journey in which they felt the centre of the joint professional attention.

Living with IMIDs was experienced as complex for the patient journey due to several diseases with different symptoms, different flare-ups, and remission and, therefore, different needs for medical optimisation. A participant described the value of a consistent interprofessional team:

Participants identified effective professional coordination as crucial for the success of the intervention components. The participants further underlined how the contact nurse acting as a care coordinator was vital in achieving this goal. Several participants described her as a node in the intervention that, through her close dialogues with both the patients and professionals, helped to keep information from the different professionals together and aligned with the needs of the patients. One participant uttered during an interview:

Other participants highlighted the care coordinator as essential, serving as an additional set of ears to ask crucial questions on behalf of patients. It also relieved participants from the burden of remembering vital information from consultations to guide their actions. A participant uttered.

This help from the nurse resulted in experiences of reduced pressure and, for some, a lighter burden on relatives involved in their treatment.

Participants emphasised the significance of a close relationship with a care coordinator, particularly a contact nurse, fostering companionship through sharing intimate details. The nurse served as an ambassador, bridging gaps and actively working for participants and their families. This companionship empowered participants to openly discuss the burdens of their everyday lives with chronic inflammatory diseases.

A participant described the trust and security in the relation with the contact nurse this way:

A close relationship with the nurse seemed critical to having confidence and building trust in the intervention. Participants highlighted the care coordinator as a decisive factor in participating in specific intervention components. For instance, a participant expressed that without a connection to the care coordinator, she would not have opted for referrals to a psychologist and a social worker:

Therefore, the care coordinator was seen as having a unique role and necessary role to bridge the expanded interprofessional approaches in the intervention.

Limitations

This study presents the experiences of IMID patients undergoing an interprofessional intervention. While we assert that the insights in this paper encapsulate the collective experiences of our participants, we acknowledge the complexity and variation in disease patterns within IMIDs. It’s important to recognise that, although not explicitly highlighted in our results, certain experiences may carry more weight in specific diseases than others. This study is built on a qualitative research design aimed at fleshing out insights from the experiential lives of patients. One limitation is that patient interviews were conducted by staff directly involved in the care of patients at the centre. Though patients experience positive outcomes in our study, the paper cannot comment on the broader clinical outcomes related to the disease management of the patients. Such information may be sought in different studies.⁶

Future directions

Building on patient experiences, we contend that future IMIDs interventions should explore the impact of expanding care teams to include professionals (e.g., psychologists, dieticians, and social workers) with expertise in understanding and alleviating the daily burden of disease experienced in social contexts with family, friends, and co-workers. Future interventions should carefully consider the role of care coordinators. While our study depicts them as professional coordinators and companions deserving of their place in interventions, further exploration is needed to achieve the most effective balance between self-care, shared care, and self-management.

We acknowledge that expenses related to interdisciplinary teams may be a limiting factor. It is plausible that the costs associated with a more comprehensive interdisciplinary treatment may result in better-treated patients with an improved understanding of disease, ultimately leading to decreased healthcare costs. However, that is outside the scope of this study.

Time is crucial in interprofessional IMIDs interventions. Some patients in the interviews felt that a six-month timeframe might be insufficient for their desired outcomes. Building trust and ensuring effective treatment may require a duration beyond six months, and this raises the critical question: What is the optimal duration for interventions to achieve desired outcomes? This paper does not address this question and should be explored in future research.