Marco D. Boonstra Strenghtening communication and self-management Health literacy interventions targeting kidney patients and health care professionals
Strenghtening communication and self-management Health literacy interventions targeting kidney patients and health care professionals Marco Douwe Boonstra
Colofon The studies in this thesis are a cooperation between the Departments of Health Sciences, Nephrology, and Primary and Long-term Care of the University Medical Center Groningen. The studies were funded by the Dutch Kidney Foundation, grant number 17SWO06. This study was conducted within the Health in Context Research Institute of the University Medical Center Groningen (UMCG) and under auspices of the research program Public Health Research (PHR). The printing of this thesis was financially supported by the Graduate School of Medical Sciences (GSMS) and the University of Groningen, the Dutch Kidney Foundation, Dialysis Center Groningen and my parents. Design by: Suzanne Nieuman, Phanatique, and Marco D. Boonstra Printed by: Ridderprint | www.ridderprint.nl Copyright Copyright of the content of this thesis is with the author or with the journals that published articles, included in this thesis. No part of this thesis may be reproduced or transmitted, in any form or by any means, without permission from the author or copyright-owning journal.
Strenghtening communication and self-management Health literacy interventions targeting kidney patients and health care professionals Proefschrift ter verkrijging van de graad van doctor aan de Rijksuniversiteit Groningen op gezag van de rector magnificus prof. dr. ir. J.M.A. Scherpen en volgens besluit van het College voor Promoties. De openbare verdediging zal plaatsvinden op woensdag 25 september 2024 om 16.15 uur door Marco Douwe Boonstra Geboren op 2 september 1985 te Smallingerland
Promotores Dr. A.F. de Winter Prof. Dr. S.A. Reijneveld Prof. Dr. G.J. Navis Copromotor Dr. R. Westerhuis Beoordelingscommissie Prof. Dr. S. Berger Prof. Dr. M.H. Blanker Dr. A.J. Linn
5 Marco Boonstra PREFACE I remember it vividly. My first visit to a dialysis unit at Dialysis Center Groningen (DCG). It was January 2015, and I had just started my job as a communication advisor. A nurse explained that the eight patients present in the unit traveled to the dialysis center three times a week. There, a nurse would insert two large needles into their shunt. Subsequently, a machine pumped their blood through an artificial kidney via dialysis lines for three to four hours. It was the only way for these people to filter their blood and survive. It left a strong impression on me! Unfortunately, an artificial kidney does not achieve the effectiveness of real kidneys. Intensive treatment alongside dialysis is needed to prevent patients from experiencing terrible itching, extreme fatigue, nausea, or, worse, death. That is why it is important to be cautious with products containing salt, potassium, phosphate, and, if someone also has diabetes, sugar. Patients also receive vitamins and often multiple medications. Since the kidneys often no longer produce urine, and people cannot urinate anymore, there is a fluid restriction of 800-1000 milliliters per day. I was very aware that this treatment demands a lot from individuals. Imagine having to incorporate a strict diet and a strenuous, exhausting treatment into your life. I admired the resilience of many dialysis patients. On the other hand, I also saw patients who were struggling. They became depressed, disillusioned, or felt overwhelmed by the vast amount of treatment advice. They were merely surviving, as rightfully pointed out in one of The Kidney Foundation’s commercials. How can we better help people who are facing such difficulties? Tanja Lips and Ralf Westerhuis, my former supervisors, encouraged me to seek answers to these questions. This was the start of my cooperation with Andrea de Winter from the Department of Health Sciences at the University Medical Center Groningen. Together, we wrote a research proposal for The Kidney Foundation. When it was approved, we could start our work. I look back with pride on this research, with the aim of better supporting patients with limited health literacy and their healthcare providers. Enjoy reading!
Paranymphs Dr. Matheus Silva Gurgel do Amaral Marlies Tonnis 'Life is like riding a bicycle. To keep your balance, you must keep moving.' - Albert Einstein
7 Contents Chapter 1. General Introduction 8 Chapter 2. How to tackle health literacy problems in chronic kidney disease patients? A systematic review to identify promising intervention targets and strategies 30 Chapter 3. A longitudinal qualitative study to explore and optimize self-management in mild to end stage chronic kidney disease patients with limited health literacy: perspectives of patients and health care professionals 62 Chapter 4. Co-creation of a multi-component health literacy intervention targeting both patients with mild to severe chronic kidney disease and health care professionals 92 Chapter 5. Effectiveness of a health literacy intervention targeting both chronic kidney disease patients and health care professionals in primary and secondary care: a quasi-experimental study 126 Chapter 6. A health literacy intervention targeting both chronic kidney disease patients and healthcare professionals is cost-saving: findings from the Netherlands 150 Chapter 7. General discussion 170 Appendices 198 Summary 200 Samenvatting 206 Dankwoord 213 About the author 220 Other publications by the author 221 optimize self-management in mild to end stage chronic kidney disease patients with limited health literacy: perspectives of patients and health care professionals 66 118 targeting both chronic kidney disease patients and health care professionals in primary and secondary care: a quasi-experimental study 156 chronic kidney disease patients and healthcare professionals is cost-saving: findings from the Netherlands 190 216 244 246 252 259 266 267 Financiering proefschrift 270
Chapter 1. General Introduction
10 Many people have limited health literacy (LHL)[1], which is associated with worse health outcomes[2,3], barriers in patient-professional communication[4,5], and worse self-management of lifestyle[6–10] and medication[11,12]. Patients with LHL are less able to access, understand, appraise and communicate information to engage with the demands of different health contexts to promote and maintain good health across the life course[13]. With effective communication, healthcare professionals (HCPs) can mitigate these effects of LHL. However, they have problems to identify patients with LHL and lack competences to communicate with them effectively[5,14]. Despite this evidence, health literacy is often not appropriately addressed in clinical care. Targeting patients with LHL and their HCPs with interventions is a proposed strategy to mitigate the global impact of chronic kidney disease (CKD)[15]. CKD occurs frequently and during the last decades, its global prevalence has risen continuously. It is now estimated that 10 to 15% of all adults have CKD[16–18]. The patients’ health and quality of life are highly affected when the kidneys deteriorate. Especially when patients need dialysis or a transplantation, the treatment and disease are a severe burden[19]. To prevent kidney deterioration, self-management of lifestyle and medication is key, but patients, especially those with LHL, consider it complicated or burdensome[20]. Additionally, HCPs encounter challenges to inform patients about CKD and to support their selfmanagement effectively[21]. Tailored interventions, targeting both the barriers of CKD patients with LHL, and the HCPs, are absent. “I had no idea CKD could be very severe, so to say. Until, later, the nephrologist said I was very close to needing dialysis. I thought: ‘Wait a minute, maybe it is bad after all! But then it was already too late, so it didn’t matter anymore”, male with severe kidney disease, 63 years “I am thinking, but during my whole career, I never said to a patient you have kidney disease, despite the fact that there are dozens of people with reduced kidney function. I just stick to telling ‘there are some proteins in your urine”, general practitioner, 61 years
11 The main aim of this thesis was to develop and test a multi-component health literacy intervention to optimize self-management of CKD patients with LHL, and to strengthen communication between these patients and their HCPs. We aimed for an intervention optimizing care in both general practices and nephrology clinics, as those settings are responsible for treating patients in different stages of CKD. First, we identified potential targets and strategies for our health literacy intervention. Second, we developed the multi-component intervention, targeting the barriers of both CKD patients and HCPs. Last, we assessed the effectiveness and cost-effectiveness of our intervention. In this introduction, we provide background information on the topics addressed in this thesis. First, we describe the concept health literacy and potential mechanisms by which health literacy influences health outcomes. Second, we provide information on CKD and on kidney care in the Netherlands. Third, we describe the importance of self-management and communication in CKD and the role of LHL in CKD. Fourth, we provide information on promising health literacy intervention strategies. Fifth, we describe the development process of our health literacy intervention, as well as how we evaluated the effectiveness and cost-effectiveness. This section includes the methodologic approaches used, i.e. Intervention Mapping, co-creation, and Markov modeling. Last, we conclude with the specific research objectives and an overview of this thesis. HEALTH LITERACY Health literacy is defined as the degree to which people are able to access, understand, appraise and communicate information to engage with the demands of different health contexts to promote and maintain good health across the life course[13]. Many people have difficulties to maintain their health due to limited health literacy. For example, in the adult European Union population, a study conducted among 8000 people reported 47% of the participants experience LHL. In the Netherlands, the prevalence of LHL is estimated at 29%, and is higher among males, people with low education and low perceived socio-economic status[1,22]. People need various health literacy skills to maintain good health and to engage with the demands of health contexts. Most researches focus on functional
12 health literacy. This encompasses if a person has ‘sufficient basic skills in reading and writing to be able to function in everyday situations’. The emphasis on selfmanagement, since the beginning of 21st century, broadened the perspective on health literacy[23]. To be able to self-manage health, disease and treatment, people need ‘more advanced cognitive and literacy skills which together with social skills, can be used to actively participate in everyday activities, to extract information and derive meaning from different forms of communication, and to apply new information to changing circumstances’. These skills are referred to as communicative or interactive health literacy. Additionally, people need ‘skills to critically analyze information, and to use this information to exert greater control over life events and situations’, referred to as critical health literacy[24]. Health literacy has long been treated as an individual asset. However, the role of the healthcare system has gained attention. LHL negatively influences someone’s capacity to self-manage, to communicate with HCPs and health outcomes[25]. On the other hand, HCPs often lack competences to communicate with patients with LHL effectively, while healthcare systems are often complex. By optimizing the healthcare system and empowering communities, for example by including the patient in the development of care strategies and policy, the negative effects of LHL can be mitigated[26,27]. An important model to understand how health literacy may influence health outcomes is the Causal Pathway model of Paasche-Orlow (Figure 1.1). According to this model, the patient’s health literacy affects three different mediating mechanisms: the utilization of care, communication between patients and HCPs, and self-management. Within these mechanisms, LHL has a negative impact on patient factors, for example when patients are less able to gain knowledgeable on self-care, or less competent in making care decisions with the HCPs. In addition the model shows the role of system factors. Worse outcomes for patients with LHL are expected when care is difficult to access or HCPs lack teaching ability or communication skills[28]. Together these patient and system factors, can either optimize or worsen health outcomes[28]. To improve the health outcomes of CKD patients with LHL, the precise influence of LHL on selfmanagement, CKD care and communication between patients and HCPs needs further unraveling.
13 Race Education Age Occupation Employment Income Social Support Culture Language Vision Hearing Verbal Ability Memory Reasoning HEALTH LITERACY HEALTH OUTCOMES ACCESS AND UTILIZATION OF HEALTH CARE Patient Factors Navigation Skills Self-Efficacy Perceived Barriers System Factors Complexity Acute Care Orientation Tiered Delivery Model PROVIDER-PATIENT INTERACTION Patient Factors Knowledge Beliefs Participation in Decision Making Provider Factors Commmunication Skills Teacher ability Time Patient-Centered Care SELF-CARE Patient Factors Motivation Problem Solving Self-Efficacy Knowledge/Skills Extrinsic Factors Support Technologies Mass Media Health Education Resources Figure 1.1 Causal Pathway model of Paasche-Orlow explaining the influence of health literacy on care access and utilization, communication and self-management, and how these mechanisms contribute to health outcomes. CHRONIC KIDNEY DISEASE CKD is defined as having abnormalities of kidney structure or function, present for three months, with implications for health[29]. In 2017, worldwide, 697.5 million people were diagnosed with CKD, of whom 1.2 million died as a result. In 2040, an expected 2.2 to 4.0 million people will decease because of CKD[30]. According to the Dutch Kidney Foundation, the prevalence of CKD in the Netherlands is 12% and thereby comparable to the global estimate[31]. Non communicable diseases, such as diabetes and hypertension, and ageing, are important causes of the rising prevalence of CKD[32]. On the other hand, CKD is a risk factor for developing cardiovascular diseases[33]. CKD is generally irreversible, and progresses through five stages, with each stage reflecting a decline in kidney function. In CKD-stages 1 to 3, there is only a mild to moderate decline in function. Symptoms are often absent or mild, and patients are not always aware of having CKD. Underdiagnoses and insufficient
14 education about CKD play a role[34–36]. In stage 2 and 3, CKD often comes with co-morbidities, such as diabetes and hypertension, heightening the risks of complications and symptoms. In stage 4, there is a severe reduction in kidney function, leading to significant complications. The final stage, End-Stage Renal Disease (ESRD), signifies a critical loss of function necessitating renal replacement therapy, like dialysis or transplantation. In the Netherlands, the organization of CKD care aligns with the progression from early stages to ESRD. General practitioners play a key role in the initial stages, focusing on diagnosis, monitoring, and addressing modifiable risk factors, for example by improving health behaviors. Patients often meet with a specialized nurse two to four times per year. As CKD advances, a multidisciplinary care team in nephrology clinics becomes responsible for the diagnosis, monitoring and treatment, and, if needed, for preparing patients for renal replacement therapy. Patients go to consultations regularly to meet with the nephrologist, specialized nurse, dietician or social worker. When patients have ESRD, often dialysis or a kidney transplantation is needed. When patients need dialysis, a machine cleans the blood of waste products of metabolism for multiple hours, multiple days a week. A transplantation requires an operation to gain an additional kidney of either a living or deceased donor. These treatments both come with strict lifestyle regimes and monitoring by the HCPs, as well as multiple medications. SELF-MANAGEMENT AND COMMUNICATION Unhealthy behaviors and low adherence to treatment play an important role in the onset and progression of CKD[37,38]. Therefore, self-management is important to slow the progression of CKD to more severe stages. Selfmanagement refers to the individual’s ability to manage the symptoms, treatment, physical and psychosocial consequences and lifestyle changes inherent in living with a chronic condition[39]. Improved self-management is associated with positive patient outcomes, such as improved health status and reduced hospitalization[40]. Effective self-management of CKD requires that patients integrate new health behaviors into their lives. In CKD-stages 2 and 3, for example, patients need to reduce their salt intake, drink sufficiently, stay or become physically active and stop smoking[20]. Additionally, patients need to take medication timely, monitor medication side-effects, and often need to manage the treatment of multiple diseases at once[41].
15 To be effective in self-management, patients need to develop or possess several competences. First, patients need good communicative health literacy, for example to ask questions during consultations with HCPs. This helps to understand the nature of CKD and the treatment. Second, patients need competences to form partnerships with the care team and their social network to share their needs and barriers in self-management, so that this can be improved. Third, at home, they have to adhere to the treatment and act proactively in their self-care, for example by monitoring their symptoms or taking medications. Fourth, to maintain changed health behaviors, patients have to feel confident and remain convinced their self-management is beneficial for their health and well-being[37]. Furthermore, multiple barriers may reduce the patients’ capacity to self-manage effectively. First, poor understanding of the disease and treatment complicates effective self-management[42]. Second, ineffective communication with HCPs has a negative influence on the patient’s self-management[43]. Third, changes in the patient’s identity, such as physical, social or mental problems, interfere with active participation in self-management[42]. Last, the absence of symptoms in mild to moderate CKD lead to lacking urgency to self-manage, while the severe disease and treatment burden in kidney failure may result in giving up on self-management[19,42]. Despite this knowledge, it remains uncertain how interventions, but also HCPs, can best optimize self-management, and what the precise role is of LHL remains unclear. THE ROLE OF LIMITED HEALTH LITERACY IN CHRONIC KIDNEY DISEASE LHL seems to have a role in the development and progression of CKD. In CKD patients, LHL is prevalent and associated with socio-economic characteristics, such as being of lower education or less able to speak the language of the country of residence[44]. The more severe CKD becomes, the more prevalent LHL is among the patient population[45]. This could indicate these patients have more problems to prevent kidney deterioration. It is known patients with LHL have a higher chance of CKD related mortality, fast kidney deterioration[3], developing CKD[45], worse kidney transplant outcomes, missing dialysis
16 treatment, and hospitalization[3]. They suffer more often from co-morbid diseases, such as diabetes, high blood pressure or depression[3]. The Causal Pathway model of Paasche-Orlow, mentioned earlier, describes potential mediating mechanisms explaining why patients with LHL have worse health outcomes[28], but evidence for these mechanisms is lacking in CKD settings. However, there are some studies showing health literacy is associated with factors related to self-management and utilization of care. For example, LHL is associated with worse knowledge regarding kidney disease, transplantation care and medication[10,12,46–50]. LHL is also associated with health behaviors, for example with worse lifestyle and worse medication adherence[6,8,10,48,51]. In addition, patients with LHL have a lower likelihood of being waitlisted for or referred to transplantation[9,52], and visit the nephrologist more often[53]. However, several mechanisms within the pathway lack evidence, for example regarding the mediating role of patient-provider interaction and the role of system factors. More insight in these mechanisms is important to develop effective health literacy interventions. First, the impact of LHL on patientprovider interaction is largely unexplored in CKD research. As a result, the role of LHL during care consultations, and more specific the association of LHL with communication competences of both patients and HCPs, is unclear. In addition, there are no studies focusing on the role of CKD health care organizations and HCPs, and to what extent they are able to support patients with LHL. From studies in other health settings, it is known HCPs lack competences to communicate with patients with LHL effectively[5,21]. Patients often hide their health literacy problems[54], and struggle to derive meaning from consultations, or to take part in decision-making[55,56]. Last, there are not many health literacy studies in earlier CKD-stages. Consequently, evidence is limited to support strategies to prevent further kidney decline. HEALTH LITERACY INTERVENTIONS IN CHRONIC KIDNEY DISEASE The above illustrates that health literacy interventions targeted at patients and HCPs are important, however there is limited evidence on the effectiveness of such interventions. Existing studies in CKD only target patients and not HCPs.
17 These interventions improved the patients’ knowledge, decision-making during consultations and to some extent patients’ self-management, but the studies mainly focused on ESRD, often lacked a control group, and measured effectiveness directly after the intervention was provided. To our knowledge, there is no evidence yet on the effectiveness of health literacy interventions on long-term self-management of health behaviors or clinical outcomes in CKD context. Additionally, there are no interventions aiming to improve the competences of CKD HCPs to better support patients with LHL[57–61]. A better understanding of the effect of health literacy intervention strategies, targeting both patients and HCPs, is needed. In addition to lacking evidence on the effectiveness and what factors should be targeted, it is unclear what intervention strategies meet the needs and competences of patients with LHL. For example, to improve self-management of patients with LHL, some non-CKD studies suggest low intensity interventions which are easy to use and accessible[62], while others state more intensive multicomponent interventions with several elements are needed to establish behavior change. In multi-component interventions separate components, together, aim to improve the patient’s knowledge, behavior change, or the communication competences of HCPs[63,64]. It is also uncertain what type of interventions are most promising to optimize the patients’ and HCPs’ competences. In general, it is suggested to use simple language, visually attractive strategies, such as pictures and video’s, and to be careful with digital strategies, as LHL is associated with limited digital skills[65,66]. However, there is limited evidence on the effectiveness of these type of interventions on self-management or health outcomes, so further study is required. Furthermore, there are no studies in CKD context on health literacy interventions to equip HCPs to support patients with LHL better. A review of Coleman et al. gives suggestions for useful strategies to improve the competences of HCPs on this behalf, for example by didactic teaching, role-play, direct observation and feedback[67]. With these strategies, health literacy trainings should aim to optimize the competences of HCPs to review information needs and patient preferences, to respond to patients’ ideas and to enable shared decision making[68]. There is evidence from non-CKD studies, health literacy training of HCPs is effective. For example, a training improved the knowledge and
18 competences of HCPs to communicate better with patients with LHL[69]. In addition, HCPs were better able to check the patients’ understanding by asking them to repeat the main messages in their own words[69], also referred to as teach-back[67]. DEVELOPING HEALTH LITERACY INTERVENTIONS FOR CKD HEALTH SETTINGS Despite the substantial evidence on the role of health literacy in developing CKD and its negative associations with CKD health outcomes[3,45], interventions remain scarce. Several international organizations state it is necessary to develop interventions targeting CKD, and, more specific, patients with LHL, to abate the global rise of CKD. The World Health Organization (WHO) signals an increase in CKD, diabetes and cardiovascular diseases. Often these diseases come together, complicating the treatment and self-management by the patients, especially for those with LHL, which needs attention in care and research[70]. With an expected shortage in the health workforce and growing digitalization, policy from the European Union as well as interventions are needed to improve health literacy, and to guarantee sustainable health systems in the future[71]. The framework delivered by the project ‘Intervention Research On Health Literacy among Ageing population’ (IROHLA) offers guidance to develop health literacy interventions with the aim to optimize self-management, communication between patients and HCPs and health outcomes[26,72]. This framework, shown in Figure 1.2, is based upon scientific literature, expert consultations and meetings within the project[28]. We use this framework in the intervention development in this thesis. Central are the individual, or patient, the healthcare professional, and the communication between them. Communication, influenced by both the context of the patient and the health system, is key to optimize the patients’ health literacy, and thereby intermediate results, such as self-management or care use. The improved intermediate results lead to improved health outcomes, which foster healthy ageing. Although the IROHLA framework provides information on relevant target groups for interventions, we did not exactly know what factors or barriers our health literacy intervention in CKD setting needed to target and what strategies were
19 promising. Therefore, to foster the intervention development, we made use of the Intervention Mapping (IM) protocol and methods of co-creation. By using such methodological approaches, we ensured both a theoretical foundation of the intervention and tailoring of the intervention to the needs of the intended target groups. Below we describe how we did this. Figure 1.2 Framework of the project IROHLA - Intervention Research On Health Literacy among Ageing population, explaining how to intervene on health literacy problems The backbone of our intervention development was provided by the IM protocol. IM is a planning approach that is based on intervention development theory and describes an iterative process with six steps to develop interventions. When researchers go through the different steps subsequently, the IM protocol serves as blueprint to design, implement and evaluate an intervention[73]. The six steps and related tasks of the IM process are given below: 1. Conduct a needs assessment or problem analysis to identify what needs to be changed and for whom; 2. Create matrices of change objectives by combining behaviors with behavioral determinants; Community support Empowerment persons lowhealth literacy Communication clients and professionals Health literacy capacities professionals Reduction access barriers HEALTH LITERACY INTERVENTIONS HEALTHY AGING INTERMEDIATE RESULTS PROFESSIONAL Health system INDIVIDUAL Context HEALTH LITERACY OUTCOMES
20 3. Select theory-based intervention methods that match the objectives and determinants and translate these into potential intervention strategies; 4. Integrate methods and the strategies into an organized program; 5. Plan for adoption, implementation and sustainability of the program in reallife contexts; 6. Generate the effect and perform process evaluations. The above steps of the IM protocol are linked to different studies and thereby chapters of this thesis. For example, Chapters 2 and 3 of this thesis focus on step one of the protocol. Chapter 4 is about the development of the intervention, and describes the results of steps two to five of the IM protocol. Chapters 5 and 6 align with steps five and six of the IM protocol, which are about the effectiveness of the intervention. In addition to the IM protocol, we used co-creation methods to ensure our intervention would meet the specific needs of patients with LHL and their HCPs. Extensive participation of these target groups was extra important to adapt the intervention as good as possible to the context of CKD. Co-creation is defined as a participatory approach in cooperation between researchers and target groups, to ensure that interventions meet their needs, preferences and abilities with an understanding of the specific context and setting[62,65,74–77]. We incorporated co-creation approaches in several steps of the IM protocol. For example, to identify the most important health literacy and self-management related problems, we used interviews and group meetings. In addition, to test the usability and content of the interventions, we evaluated concepts of the intervention during pilot-tests with patients and HCPs. INVESTIGATING THE EFFECTIVENESS AND COST-EFFECTIVENESS OF OUR INTERVENTION After the development, a quasi-experimental study was performed to determine the effectiveness and cost-effectiveness of the intervention. A comparison of outcomes between the intervention and control group was related to the level of health literacy, self-management, and communication. These outcomes can either relate to the competences of patients or those of HCPs. Additionally, the impact of the intervention on the patients’ clinical outcomes, such as glomerular
21 filtration rate, blood pressure, and BMI, was assessed. A cost-effectiveness analysis was performed according to the Dutch guideline for economic evaluation in healthcare[78]. In this analysis, a Markov Model was used. This model assumes patients stay in one cycle (i.e., a defined health state, for example CKD-stage 3) for a certain time and then make a transition to another cycle (for example CKD-stage 4). The Markov Model is used to extrapolate the effects found in the quasi-experimental study on a lifetime horizon[79]. Such a model was needed, as the timespan of our intervention study was nine months, and insufficient to find effects for a longer period. We included different parameters in the model, such as mortality, CKD progression, quality of life and medical costs. Combined with an estimation of the costs of the intervention, these parameters help to determine if the intervention is cost-effective. More information on the above is in Chapter 5 and 6. RESEARCH GAPS In this thesis, we address several research gaps, also mentioned above. At the start of our research, it was unclear which factors should be a priority for interventions aiming to optimize self-management of CKD patients with LHL. Additionally, the barriers HCPs experience when treating patients with LHL, were unknown. Therefore, the first step in our research intended to identify what interventions need to target to support both CKD patients with LHL and HCPs to overcome health literacy related barriers. Second, there were only few tailored interventions to mitigate the effects of LHL in CKD setting. The existing interventions targeted only patients, mainly with severe CKD. The best intervention strategies for prevention, and to support patients with LHL and HCPs in earlier stages of CKD, were unknown. Therefore, we aimed to identify these strategies and develop an intervention with input of patients and HCPs. Third, there were almost no high-quality studies analyzing the effect of health literacy interventions in CKD health setting. We performed a quasi-experimental study to analyze the effectiveness of the developed intervention. We evaluated if the intervention was able to improve clinical outcomes, several competences of CKD patients, such as self-management and communication competences, and the competences of HCPs to support patients with LHL. Additionally, we determined if the developed intervention was cost-effective.
22 AIMS OF THIS THESIS Against this background, this thesis aims to develop and evaluate a multicomponent intervention to strengthen self-management of CKD patients with LHL and to strengthen communication between these patients and their HCPs in both general practices and hospitals. To reach our main aim, we used a stepwise approach with multiple studies. Each study had a specific aim: 1. To summarize the evidence on patient- and system-level factors potentially mediating the relation between LHL and health outcomes, and on the effectiveness of health literacy interventions customized to CKD patients LHL (Chapter 2). 2. To explore experiences with and barriers for self-management, from the perspectives of both CKD patients with LHL and HCPs (Chapter 3). 3. To determine the objectives and strategies for a multi-component intervention targeting CKD patients with LHL and health care professionals. Moreover, to design, produce and evaluate the intervention to meet the needs of the target groups (Chapter 4). 4. To assess the effect of the intervention on self-management of health behaviors, patient activation, clinical parameters, quality of consultations, and the health care professionals’ use of health literacy strategies. Moreover, to evaluate the use and usefulness of, and satisfaction with the intervention (Chapter 5). 5. To analyze the cost-effectiveness of the intervention by evaluating the effects of the intervention on quality-adjusted life years and healthcare costs in the Netherlands compared to care as usual (Chapter 6).
23 OVERVIEW OF THE THESIS An overview of this thesis with research phases, chapter numbers, methods and study aims is in Figure 1.3. This thesis consists of seven chapters. This Chapter 1 provided background information. Chapter 2 describes the results of a systematic review, in which we analyzed 48 scientific articles regarding HL and CKD. In this chapter, we summarize the strength of the evidence on relationships between health literacy and a variety of patient- and system-level factors, and on the effectiveness of HL interventions customized to CKD patients. Based upon the results, we identify promising intervention targets and strategies. Chapter 3 gives the results of a longitudinal qualitative study with in-depth interviews and focus group discussions. We give an overview of experiences and barriers for self-management from the perspectives of patients with LHL and HCPs. Chapter 4 describes the development of Grip on Your Kidneys, based upon the intervention mapping protocol and methods of co-creation. First, we show the process of determining the intervention objectives and strategies of a multi-component intervention targeting CKD patients with LHL and HCPs in CKD health settings. Second, we describe the designing and producing of the intervention, and the perceived usability and comprehensibility of the intervention and its fit to needs of the target groups. Chapter 5 gives the results of a quasi-experimental study with an intervention and control group. In this chapter, we describe to what extent the intervention is able to improve patient activation, clinical parameters, quality of consultations, and the HCPs’ use of health literacy strategies. We also share the results of a process evaluation upon the use and usefulness of, and satisfaction with the intervention. Chapter 6 describes the results of a cost-utility analysis, using a Markov model. We extrapolated the effects found in the quasi-experimental study on a lifetime horizon, to learn if the intervention leads to a cost-reduction, compared to careas-usual. Chapter 7 is a general discussion in which we reflect upon our most important results, methodological considerations and recommendations for practice and future research.
24 Figure 1.3 Overview of this thesis with research phases, chapter numbers, methods and study aims. Chapter 2: Systematic review Summarizing the evidence on factors potentially mediating the relation between LHL and health outcomes, and on the effectiveness of health literacy interventions customized to CKD patients. Chapter 3: Longitudinal qualitative study Exploring experiences with and barriers for self-management, from the perspectives of both CKD patients with LHL and health care professionals. PHASE 1 IDENTIFYING POTENTIAL TARGETS AND STRATEGIES FOR OUR HEALTH LITERACY INTERVENTION Chapter 5: Quasi-experimental study 1) Assessing the effect of the intervention on self-management of health behaviors, patient activation, clinical parameters, quality of consultations, and the health care professionals’ use of health literacy strategies. 2) Evaluating the use and usefulness of, and satisfaction with the intervention. Chapter 6: Cost-utility analysis using a Markov model Investigating the cost-effectiveness of the intervention, compared to care-as-usual, via a reduction in CKD progression. PHASE 3 ASSESSING THE EFFECTIVENESS AND COST-EFFECTIVENESS OF OUR HEALTH LITERACY INTERVENTION Chapter 4: Intervention Mapping, combined with co-creation methods 1) Determining the objectives and strategies for a multi-component intervention targeting CKD patients with LHL and health care professionals. 2) Designing, developing and evaluating the intervention to meet the needs of the target groups. PHASE 2 DEVELOPING OUR HEALTH LITERACY INTERVENTION Provided promising intervention targets and strategies for the next study phase. Provided the final intervention, Grip on Your Kidneys.
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