Towards what really matters for people with chronic conditions : Design of a self-management support guide from the patient perspective

The prevalence of people with chronic conditions, such as Chronic Obstructive Pulmonary Disease (COPD) and Rheumatic and Musculoskeletal diseases (RMDs), is steadily increasing. At the same time, healthcare is facing a scarcity of healthcare professionals (HCPs), resulting in extremely long waiting lists and limited time for HCPs to treat patients. A possible solution to meet the increasing demands now and in the future is to adopt a proactive healthcare system. To achieve this shift to proactive healthcare, it is essential that people with chronic conditions are empowered to become active partners in their patient journey and supported to engage in self-management. Although a body of literature about self-management is available, this mostly focuses on self-management from a clinical perspective (e.g., taking medication). However, little is known about the patient perspective of self-management. This perspective is extremely important as people with chronic conditions need to perform self-management, most of the time, by themselves at home and outside the clinical setting. Therefore, it is important to shed light on their needs, wishes, and efforts by involving them in our research through Patient Engagement (PE). This thesis aimed to increase our understanding of self-management from a patient perspective and, by engaging people with chronic conditions, identify how the self-management of people with COPD and RMDs can be supported. This aim is achieved through answering the three research questions stated in Chapter 1. Part I: The current body of knowledge in healthcare practice and literature In Chapter 2, the current healthcare practice for self-management was explored by developing a Pan-European service model for a self-management eHealth intervention for COPD in three countries (Estonia, Italy, and the Netherlands). We first showcased how the method of service modelling can be used for such interventions and revealed that a service model shapes, along with the dynamic practice. Furthermore, we also identified that not all people with chronic conditions are ready to take an active role in their care, nor are all HCPs ready to let go of their responsibility and control. However, empowerment and shifting (guided) responsibility are crucial to support one’s self-management. Therefore, this paper indicates a current gap, namely that current practice isn’t fully ready to support self-management. In Chapter 3, a scoping review was performed to investigate the current body of knowledge of eHealth self-management interventions for people with COPD. This review investigated the current literature by describing different components: the functionality, modality, technology readiness level (TRL), underlying theories of the technology, positive health dimensions addressed, target population characteristics, self-management processes, and behaviour change techniques (BCTs). We found that most eHealth self-management interventions support the physical aspect (e.g., self-monitoring), and other aspects (e.g., psychological resources) are underrepresented. Besides, we also identified that often a subgroup of people with COPD is included in studies (e.g., those with (digital) literacy). Thereby, excluding a group of people who may need the self-management support the most. These results indicate a gap in the current literature about self-management eHealth interventions for COPD, as they focus on the physical domain, and other dimensions (such as participation) are underrepresented. Part II: The current self-management strategies from a patient perspective Chapter 4 investigated the self-management strategies that people with RMDs apply in their daily lives. In total, 250 survey responses were collected, consisting of 1305 strategies and 669 elaborations. This showed that people with RMDs already do a lot for their self-management. Also, diverse self-management strategies were employed. For example, strategies in the categories nutrition and supplements, energy distribution, and participation were mentioned. Motivations to start a self-management strategy derived from the bodily functioning category, indicating that, for example, experiencing symptoms might be the first reason to perform self-management. Showcasing that in this study, people with RMDs are intrinsically motivated to improve their situation and take responsibility for their condition by applying different self-management strategies, and, through trial and error, experiencing what works best for them to become active participants in their care. Chapter 5 investigated the self-management strategies in the daily lives of people with COPD by utilizing the same survey used in Chapter 4. However, in this study, we also explored additional ways to disseminate and collect data with the aim of increasing response rates. In addition, we also investigated whether the data analysis instrument used for people with RMDs could be applied to the COPD population. Results showed that people with COPD also perform diverse self-management strategies. All strategies performed could be easily categorised using the self-management model developed in Chapter 4. This suggests that self-management might be disease-generic rather than disease-specific. The passive approaches (e.g., people needing to sign up themselves to participate) used, aiming to increase response rates, were not sufficient. This study showed that people with COPD currently perform diverse self-management strategies in their daily lives. These efforts may not always be visible in the clinical setting, as these are often initiated by one’s own search journey and thus are usually additional to standard HCP advice. Part III: The future perspective of self-management support Chapter 6 identified the problems of current practice and the needs of people with chronic conditions towards self-management support. Furthermore, through a participatory design process, consisting of 3 phases (Exploration, Iterative Design, and Final Evaluation) with 7 study rounds, a self-management support guide was developed. In total, 40 people (with COPD, RMDs, or HCPs) participated in the design process. This study showed that participants experienced a lack of self-management support (e.g., missing information) in practice. The self-management support guide aims to support people with chronic conditions in their self-management journey by providing them with information and letting them fill in several questions to holistic self-management categories. The guide enables making the first step towards self-management and can be tailored to the specific needs of each person. Chapter 7 synthesizes the findings of the various chapters and answers the three research questions formulated in Chapter 1. First, we discuss the current literature and healthcare practice. Second, the self-management strategies of people with RMDs and COPD are discussed. Third, the future perspective for self-management was addressed and, four recommendations for this future perspective were summarized: 1) Engage people with chronic conditions in the different phases of research, 2) Create space for people with chronic conditions to take responsibility for their own health, 3) Consider self-management strategies that are disease-generic instead of focusing on disease-specific, and 4) Make self-management strategies inclusive by increasing efforts to reach the underrepresented population. Finally, we reflected on the involvement of people within this dissertation by mapping our engagement to the involvement matrix and shared our lessons learned. These lessons learned were 1) Patient Engagement entails balancing the need for inclusivity while keeping the safety, burden, and potential benefits for the patient partners in mind, 2) Patient Engagement goes beyond collecting relevant and impactful data: It is about building a community, 3) Relationship building is crucial for Patient Engagement, and Patient Partners should be continuously valued, 4) Approaches for Patient Engagement should be active: They should be organized to be highly accessible and easy to step into at any time, 5) Flexibility is a key component of Patient Engagement: account for sufficient time for every step, as plans might need to change, 6) Patient Engagement is not a one-time data collection: It does not stop at the end of your study and entails keeping people in the loop (e.g., by providing information and research summaries), 7) The researcher should adapt to the availability of the patient partner, not the other way around, and 8) Opportunities must be investigated to increase involvement (e.g., give something back, co-author on papers, participation in conferences). This chapter ends with some concluding words.