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Rethinking IPF care: charting the course to person-centred integrated care for idiopathic pulmonary fibrosis together with patients and healthcare professionals

Boek - Dissertatie

Idiopathic pulmonary fibrosis (IPF) is a rare lung disease that has a crude impact on a person's ability to breathe freely due to the progressive accumulation of scar tissue which destructs lung tissue. As a result, patients face debilitating symptoms such as breathlessness and fatigue, and are given a poor prognosis of two to five years after diagnosis if left untreated. Fortunately, there are two anti-fibrotic drugs available that positively impact the survival rate by slowing down disease progression. Nevertheless, the disease is still fatal and despite the positive effects of the medication on disease progression, patients continue to suffer from disease symptoms and experience a reduced quality of life. In addition, the medication needs to be taken long-term and often causes deleterious side effects such as gastrointestinal problems or phototoxicity which need to be managed adequately. On top of that, patients need to manage their psychological wellbeing, preserve a high social integration, and adapt their lifestyle or implement new behaviours such as staying physically active, applying sun protection, and limiting their alcohol use. Since IPF is a chronic illness, patients with IPF and their caregivers need a care system which addresses their individual multidimensional needs, including behavioural needs, values, and preferences (i.e., person-centred) and which subsequently organizes, and coordinates tailored care services by integrating various specialists across settings (i.e., integrated). At this moment, however, the IPF care systems mainly address medical and pharmacological care needs, while less attention is paid to other unique care needs of patients. Moreover, adequate coordination of care whereby multidisciplinary care teams across settings join hands in the patient's care is rather the exception, than the rule. Given the various challenges faced by patients, healthcare professionals and care systems in dealing with IPF disease, and the fact that we all want the highest quality care for the patients, the question arises as to whether the current care processes need to be rethought and redesigned to provide the person-centred integrated care that patients and informal caregivers need. This is the central question we have investigated in this doctoral work. We particularly focused on the IPF care model at the University Hospitals Leuven as this is one of the three Belgian centres of expertise for IPF diagnosis and management. Also, we used the Chronic Care Model (CCM) as theoretical framework to underpin the inquiry as this model helps researchers and healthcare professionals to reassess and organize the care delivery for chronically ill persons. In a first phase, we thoroughly assessed the current care and the needs of patients with IPF, their informal caregivers and the healthcare professionals involved in the care using a mixed methods approach. More specifically, we conducted a systematic literature review to identify care models/components that have been developed to address the multidimensional care needs of IPF patients (chapter 2). We performed one-on-one in-depth interviews with patients, caregiver and healthcare professionals involved in IPF care to gather their experiences and needs regarding IPF care (chapter 3). We also conducted an observational prospective study to gather insights on patients' psychological and behavioural needs, including medication adherence (chapter 4 and 5). Our results show that there are challenges related to health literacy, adherence to sun protection recommendations (to manage the phototoxic side effect of pirfenidone), psychological well-being, alcohol consumption, physical activity, and weight management. We also observed that patients face issues with taking their medication as prescribed, as measured by electronic monitoring, and our findings underscore the negative impact medication nonadherence might have on lung function outcomes. Moreover, several suggestions were mentioned during the interviews to provide pro-active care to act upon individual patients' needs and to expand the team-based multidisciplinary care with an extended role for the nurse. However, a lack of resources was also reported which hampers the involvement of other disciplines such as psychologists and dieticians. Hence, there are opportunities to build bridges and create formal collaborations with community services or healthcare professionals across settings and care levels. Furthermore, we observed a need for a structured care strategy for advance care planning, adherence support, self-management service and behavioural support, among others. In conclusion, despite the limited evidence available in the IPF literature, we noted opportunities to redesign the physician-centred acute care model to person-centred integrated care. Subsequently, in a second phase, we worked together with stakeholders, including patient representatives to prioritize the opportunities for change (chapter 6), to gather ideas on how to improve the care based on the priorities and to rank order the proposed ideas (chapter 7). As a result, we propose care components that should be integrated in the current IPF care to set the course for person-centred integrated care. These include the screening and assessment of patients' needs and wish for support, the use of individual care plans developed with the patient and caregiver, and the implementation and follow-up of the action points from the care plan. The important role of advanced practice nurses is emphasised as well as the establishment of networks of expertise (chapter 8). Altogether, based on our work and in line with principles of person-centred integrated care, we propose elements and goals to be further pursued in research and in routine IPF care, which should be underpinned by stakeholder involvement. These elements refer to placing patients with IPF and their informal caregivers at the centre of the care system, whereby care services are organized according to their individual needs, preferences, and values. In the newly designed integrated care model, a trained and coordinated IPF multidisciplinary team provides the care with the (advanced practice) nurse playing a pivotal role in care coordination activities, nurse-led care, and as the contact point for patients. Moreover, in the new model of care, there are streamlined referral systems and services with community resources and health professionals from other disciplines and across settings, where all actors are adequately informed about IPF and have the core competencies to care for patients with IPF and their informal caregivers. The interaction between the care teams and the IPF patient/informal caregiver is based on person-centred communication and relationships of trust are built. High-quality long-term accessible care, including self-management support is provided. The care is aligned to patients' needs, values, preferences and health literacy level as well as coordinated and integrated with these community services and healthcare professionals from other disciplines and across settings. Importantly, there is a clinical information system adapted for IPF care which supports the delivery of care (e.g., by integrated evidence-based guidelines) and facilitates the measurement of outcomes that matter to patients. Lastly, the importance of patient advocacy groups and peer support groups is emphasised, with initiatives being sought to better involve these groups in supporting patients and carers.
Jaar van publicatie:2022
Toegankelijkheid:Open