Objective To systematically identify and describe self-management interventions for adult patients with chronic kidney disease (CKD).
Participants Adults with CKD stages 1–5 (not requiring kidney replacement therapy).
Interventions Self-management strategies for adults with CKD.
Primary and secondary outcome measures Using a scoping review, electronic databases and grey literature were searched in October 2016 to identify self-management interventions for adults with CKD stages 1–5 (not requiring kidney replacement therapy). Randomised controlled trials (RCTs), non-RCTs, qualitative and mixed method studies were included and study selection and data extraction were independently performed by two reviewers. Outcomes included behaviours, cognitions, physiological measures, symptoms, health status and healthcare.
Results Fifty studies (19 RCTs, 7 quasi-experimental, 5 observational, 13 pre-post intervention, 1 mixed method and 5 qualitative) reporting 45 interventions were included. The most common intervention topic was diet/nutrition and interventions were regularly delivered face to face. Interventions were administered by a variety of providers, with nursing professionals the most common health professional group. Cognitions (ie, changes in general CKD knowledge, perceived self-management and motivation) were the most frequently reported outcome domain that showed improvement. Less than 1% of the interventions were co-developed with patients and 20% were based on a theory or framework.
Conclusions There was a wide range of self-management interventions with considerable variability in outcomes for adults with CKD. Major gaps in the literature include lack of patient engagement in the design of the interventions, with the majority of interventions not applying a behavioural change theory to inform their development. This work highlights the need to involve patients to co-developed and evaluate a self-management intervention based on sound theories and clinical evidence.
- chronic kidney disease
- scoping review
- person centered-care
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Strengths and limitations of this study
A strength of our study is that it is the first scoping review to apply the principles of patient-oriented research, where patient partners were engaged in determining the research question, advising us on search terms and reviewing the results to ensure we captured and reported the data meaningfully.
Our scoping review is comprehensive in nature, with inclusion of all study designs and consideration of self-management features that have not been investigated previously.
Due to the heterogeneous nature of the literature, it was challenging to synthesise the data. To address this challenge the two reviewers used two standardised tools to independently extract data and independently coded the outcomes into categories using the revised Self- and Family Management Framework.
A limitation of our scoping review is that we were unable to assess the self-management outcomes in terms of sustained changes in behaviour, physiological and health status.
We were unable to draw conclusions regarding the most effective self-management intervention for adult patients with chronic kidney disease, keeping in mind that our aim was to review the breadth of the current literature and present the gaps that exist.
Chronic kidney disease (CKD) is associated with adverse health outcomes, poor quality of life and high healthcare costs.1 Patients with CKD often experience a number of comorbidities including diabetes, cardiovascular disease and depression.2 They must balance the medical management of their kidney disease and other chronic conditions with demands of their daily lives, including managing the emotional and psychosocial consequences of living with chronic disease. In a recent CKD research priority setting study, individuals with non-dialysis CKD, their caregivers, clinicians and policy-makers identified the need to develop optimal strategies to enable patients to manage their CKD and related comorbidities to slow or prevent the progression to end-stage kidney disease (ESKD).3 International data in research priority setting for kidney disease also highlights self-management as a top priority to prevent progression.4
Self-management interventions aim to facilitate an individual’s ability to make lifestyle changes and manage symptoms, treatment and the physical and psychosocial consequences inherent in living with CKD and associated comorbidities.5 Self-management of CKD involves focusing on illness needs (developing knowledge, skills and confidence to manage medical aspects), activating resources (identifying and accessing resources and supports) and living with the condition (learning to cope with the condition and its impact on their lives as well as the emotional consequences of the illness).6 Self-management requires patient engagement; however, the degree to which patients are able or willing to participate in self-management can vary, and individual and health system factors may serve as facilitators or barriers to self-management processes.7
Despite the high prevalence of CKD and its impact on patient outcomes, there is limited evidence on the effectiveness of self-management interventions. Prior systematic reviews8–11 and three integrative reviews12–14 found that self-management interventions were variable in their effectiveness for managing and preventing progression of CKD. While these reviews add to the knowledge base, they have restricted inclusion criteria (eg, study type, patient population) and unclear reporting strategies (ie, describing complex self-management interventions in detail and providing structured accounts of the interventions and outcomes). In particular, features of self-management interventions such as person centeredness, applicability to comorbidities associated with CKD, physiological and non-physiological outcomes and application of any behavioural change theories are often lacking. Self-management interventions need to be tailored to suit diverse patient needs and preferences as well as the local healthcare context.7 Therefore, investigating the ‘who’, ‘what’ and the ‘how’ of self-management interventions is crucial. We used recognised literature synthesis and reporting guidelines, along with engagement of our patient partners in determining the research question and search terms as well as reviewing the results to ensure we captured and reported the data meaningfully.
To our knowledge, there is no literature synthesis that systematically and comprehensively summarises the breadth of evidence found in primary quantitative, qualitative and mixed methods research regarding self-management interventions for adult patients with CKD. We used a scoping review methodology to understand the range and types of interventions including both educational and support interventions for CKD to inform the future design of a self-management intervention. Specifically, we conducted a scoping review to identify and describe self-management interventions for adult patients with CKD (stages 1–5; non-dialysis, non-transplant).
Materials and methods
We used a scoping review methodology to enable us to incorporate a broad range of studies and to summarise the knowledge from a variety of sources and types of evidence.15 Our aim was to identify gaps in literature related to CKD self-management interventions and inform future research. A unique and important aspect was the involvement of ‘patient partners’. Through a national initiative, Canadians Seeking Solutions and Innovations to Overcome CKD (Can-SOLVE CKD), patients work side by side with researchers, clinicians and decision makers to address patient-oriented research priorities.16 Our research team includes Can-SOLVE CKD patient partners with CKD and caregivers.16 Using the Joanna Briggs Institute framework for scoping reviews, we undertook the following steps: (1) identified the research question, (2) identified relevant studies, (3) completed study selection, (4) charted, collated, summarised and reported the results (5) and consulted with our patient partners.15 17 These steps were iterative to ensure comprehensive inclusion of the literature and continued meaningful engagement with our patient partners. This work involves identifying, reviewing and categorising data from primary articles and does not involve human participants and is exempt from ethics approval.
Our scoping review aimed to determine the available self-management interventions for adults aged 18 years and over and diagnosed with CKD stages 1–5 (not requiring dialysis or transplant).
Search and selection of studies
We worked with an information specialist (DL) to identify key words that represented the population (CKD) and the intervention (self-management). We searched a broad range of information sources including the following online databases: MEDLINE (OVID), EMBASE, PsycINFO, Cochrane Central Register of Controlled Trials, CINAHL Plus and Cochrane Database of Systematic Reviews for published studies, with no limits on date (inception to October 2016), language, age or study design. We also searched Web of Science from 2006 to October 2016 to capture recently published meeting abstracts and summaries. Using the Canadian Agency for Drugs and Technology (CADTH) Grey Matters approach,18 we searched Google Canada, Health Technology Assessment (HTA) agencies (Canada, Australia, Ireland, UK and USA) and Clinical Trials databases (Biomed Central—ISRCTN Registry, US National Institutes of Health, ClinicalTrials.gov) during October 2016 with no language restrictions (online supplementary table 1). Our search strategy for grey literature was guided by the specific database (ie, Google search operators, website search filters) and was completed within a single session for each search strategy to ensure consistency due to the dynamic nature of the internet (online supplementary table 2). Two reviewers (BK and MD) also reviewed the reference lists of included studies, along with those identified in past systematic and integrative reviews of our research topic. We contacted authors of relevant protocols and conference abstracts to ascertain if their work and findings were published.
A study was included if the population involved adults with CKD (stages 1–5, non-dialysis, non-transplant). Self-management interventions included strategies, tools or resources in any delivery format (print, electronic, face to face and so on) that facilitated an individual’s ability to make lifestyle changes or to manage symptoms, treatment or the physical and psychosocial consequences inherent in living with CKD and other associated comorbidities. Interventions targeted only at selection of treatment for ESKD (ie, dialysis, kidney transplant) were excluded. Other self-management interventions or standard care were considered as a comparison. We included primary studies that used quantitative, qualitative or mixed methods. Systematic and integrative reviews were identified for the purpose of reviewing their included studies for potential relevant studies. We excluded case series, case studies, case reports, clinical practice guidelines, theses and opinion-driven reports (editorials, non-systematic or literature/narrative reviews).
Three reviewers (BK, MD and BH) performed an initial screen of titles and abstracts using a citation screening tool. To determine inter-rater reliability, a calibration exercise was performed by the three reviewers. Pilot testing a random sample of 50 citations achieved good agreement (kappa=0.79) at which point the three reviewers screened the remaining titles and abstracts. Two reviewers (BK and MD) followed a similar procedure for identifying relevant full text studies, with good agreement between the two reviewers (kappa=0.78). Disagreements were resolved by discussion and obtaining consensus between the three reviewers.
Charting, collating and summarising the data
We developed a data extraction form based on the Template for Intervention Description and Replication (TIDieR) checklist.19 This checklist provides a template to structure accounts of an intervention (eg, goal of intervention, materials used, who delivered the intervention and how, where, when and how much and how well the intervention was delivered). We also used the Effective Practice and Organisation of Care (EPOC) data collection form20 to ensure we were comprehensive in extracting relevant study characteristics as outlined by Cochrane EPOC group. Study characteristics (eg, study design, country of origin, publication year), population characteristics (eg, CKD stage, comorbidities) and self-management intervention characteristics (eg, topics, format, target audience, providers, location, dose, duration and so on) were documented. For the study outcomes, the two reviewers (BK and MD) independently coded each outcome into categories identified by Grey et al (eg, behaviours, cognitions, physiological measures, symptoms, health status, healthcare and other).6 We pilot tested the form on a random sample of 10 eligible studies and once consensus between the two reviewers was reached, we independently abstracted data from the remaining eligible studies. Data were categorised and reported descriptively (ie, counts and frequencies). For qualitative studies, we identified the methodology and key concepts presented by the authors.
Consultation with patient partners
Patient partners were engaged throughout this work, specifically to provide input on the research question, search strategies (eg, grey literature sources) and reviewing the final results. The results were presented and discussed at the national Can-SOLVE CKD meeting.
Description of studies
A summary of the 50 studies included in this review is provided in table 1.
The most common study designs were randomised controlled trials (RCTs) (38%). Non-RCTs consisted of quasi-experimental (14%), observational (10%), pre-post intervention (26%), qualitative (10%) and mixed methods (2%). The studies were conducted in 14 countries, including the USA (20%), UK (14%) and Australia (12%). Most studies were published in the last 5 years (64%).
Patient population characteristics
The target population in most studies was CKD (72%) and 15 studies mentioned CKD plus one or more associated comorbidities. The average ages of participants reported across studies were 50.2 to 74.3 years.
Description of self-management interventions
Table 2 summarises the characteristics of the self-management interventions. Five studies reported the same self-management intervention;21–25 therefore, 45 interventions were summarised. The most common intervention topic was diet/nutrition (64%) and the least common topics were symptom management and lifestyle (13% and 11%, respectively). The most frequent modes of delivering the intervention were face to face (80%), multiple (ie, more than one mode) (71%) and print (64%). Electronic was the least common delivery mode (16%). Interventions were administered by a variety of providers. The most common category of providers was ‘other’ (56%), which was made up of various types of health professionals and lay people. However, the most common identifiable group of providers were nursing professionals (49%). Patient volunteer/mentor was the least common (9%). The outpatient setting was the most common location for providing the self-management intervention (51%), and the inpatient setting was the least popular (2%). Many studies did not report the intervention language (53%), but 12 languages were represented and seven studies reported that they provided the intervention in multiple languages.
In terms of intervention development, only 20% of studies mentioned the use of evidence such as theories or frameworks. These included the transtheoretical model of behaviour change, social cognitive theory and chronic care model.26–30 Less than 1% of the studies involved patients in the design of the intervention, where patients were interviewed regarding intervention content.26 31–33
Description of quantitative study outcomes and results
Characteristics of the quantitative study outcomes are presented in table 3. Twenty-three (46%) studies measured physiological outcomes (ie, laboratory tests, body composition and so on). The least common outcomes reported by studies were health status and healthcare (each 10%) and symptoms (ie, fatigue) (4%). Table 4 summarises the details of the quantitative studies. We categorised the overall study results descriptively as improved, unchanged or worse. Many studies had more than one outcome measure (eg, one measure improved, another had no change) and they were reported as mixed results. Based on this method of categorization, 89 outcomes were reported, of which 61% improved, 20% had no change, 1% worsened and 13% had mixed results. Four of the results were reported as not applicable as the outcomes were not relevant. Of the 54 outcome categories that improved, 15 were cognition, 9 were physiological measures, 8 were behaviours, 8 were individual outcomes, 5 were health status, 4 were healthcare, 4 were intervention specific and 1 was symptom management.
Description of qualitative study outcomes and results
Table 5 summaries the findings from six qualitative studies that explored patient perspectives, one of these being a mixed methods study. All studies used semistructured interviews and one also used a questionnaire. The aims of all these studies were to examine patient perspectives’ regarding the self-management interventions they were involved in. Due to the variety of interventions (eg, intervention topics, delivery mode and providers of the intervention), it was difficult to summarise findings into meaningful categories. Overall, patients highlighted that interventions needed to be individualised and tailored to their specific situations and preferences (eg, awareness of having CKD, stage of CKD, knowledge of the disease, access to resources and so on).
To our knowledge, this is the first scoping review involving patients as research partners to identify and summarise self-management interventions for adults with CKD. The scoping review methodology enabled us to systematically summarise a broad range of self-management interventions and describe their features. We identified 50 studies that investigated self-management interventions for adults with CKD, with considerable variation in interventions, outcomes assessed and results obtained (ie, some improved and/or some worsened and/or some did not change). We found that self-management interventions for CKD is an emerging area with most studies published within the last 5 years which may be related to the growing recognition of the importance of incorporating patients and their families in managing their disease to improve outcomes.7
Our findings are similar to prior reviews reporting that the design of self-management interventions for CKD has not been theoretically driven and they have been predominately designed by healthcare professionals without input from patients.13 14 Person-centred care is changing how healthcare professionals deliver care to patients, but more importantly how patients and their families are actively involved in self-managing their chronic conditions.71 Engaging patients by having them co-design self-management interventions will ensure that patient preferences based on their values, culture and psychosocial needs will be addressed in the self-management intervention.12–14 Through our current national partnership with patients, researchers and clinicians, we have the opportunity to obtain patient perspectives, along with incorporating a behaviour change theory to inform the future design of a self-management intervention for CKD.
Only 28% of studies that we identified included patients with CKD plus other comorbidities, despite the common presence of comorbidities in this patient population. Less than one-quarter of included studies provided information on how to manage comorbid conditions such as tracking lab results and symptom management. This highlights the need to consider ‘whole person care’, where the self-management intervention needs to encompass the physical, mental and emotional needs of the patient72 73 that are important to them as well as meeting the individuals desires by collaboration between relevant providers.71
Forty-five different self-management interventions were identified, with one or more topics presented in a variety of formats and by a variety of providers. Symptom management and lifestyle topics were not included in many of the interventions. Based on prior work,3 non-dialysis patients with CKD have indicated that these were important topics for them in managing their CKD with an aim to slow the progression of CKD and will be important to consider in the development of future interventions. Face to face was the most common delivery format while electronic (internet or mobile application) was least common, with many studies reporting multiple formats (ie, face to face and printed materials). With the expansion of electronic platforms for supporting patients and providers in the uptake of evidence-based care, there is the potential to use an electronic format to support patients in self-managing their CKD and other comorbidities.74 It is worth noting that there was variability in duration and frequency of face to face encounters, from a single session to multiple sessions over weeks to months. While varied options for in-person delivery is good if it meets the needs of the patients and their families, it may not be feasible on a larger scale due to the resources required. Only five studies looked at self-management healthcare cost-effectiveness, healthcare utilisation and access, each measuring different end-points with mixed results. Future self-management interventions should include the essential principles to self-management (eg, accessing relevant health information, adhering to multiple treatment protocols, changing health behaviours, shared decision making with healthcare providers),7 75 along with evaluation of the cost-effectiveness and resource utilisation.
The majority of studies did not identify a single primary outcome but rather multiple outcomes. We found that physiological outcomes (ie, blood pressure) were the most commonly reported and symptoms were the least mentioned. These findings demonstrate the lack of patient-driven outcomes that may be important to them, for example, a patient’s individual health goals across a variety of dimensions (ie, symptoms, mobility, social and role function in the family or community) that could possibly maximise their quality of life. Work by Tong et al (2015) highlights this concept, where patients with CKD are more interested in treatment choices that influence non-traditional clinical outcomes such as impact on family and lifestyle.72 A holistic approach should be considered where mental and psychosocial outcomes are investigated, rather than just physiological endpoints.
Our findings from the qualitative studies looking at patient perspectives are inconclusive because of the limited number of studies and the heterogeneity of the interventions. Havas et al 12 similarly reported a lack of research related to patient perspectives on self-management in CKD.12 There is also a lack of qualitative studies overall, which could provide valuable information regarding attitudes and challenges of self-management interventions from the perspective of both providers and patients.
Strengths of our study include the comprehensive nature of our search, inclusion of all study designs and consideration of self-management features that have not been investigated previously. We also engaged patient partners in determining the research question, advising us on search terms, grey literature sources and reviewing the results to ensure we captured and reported the data meaningfully. One of the main limitations was the challenge in synthesising the data given its heterogeneous nature. To address this challenge, the two reviewers used two standardised tools TIDieR19 and the EPOC tool20 to independently extract data and independently coded the outcomes into categories using the revised Self-and Family Management Framework .6 Also, we were unable to assess the self-management outcomes in terms of sustained changes in behaviour, physiological and health status. A final limitation was our inability to draw conclusions regarding the most effective self-management intervention for adult patients with CKD, keeping in mind that our aim was to review the breadth of the current literature and present the gaps that exist.
Overall, we found considerable variation in self-management interventions for adults with CKD with respect to their content and delivery as well as the outcomes assessed and results obtained. Major gaps in the literature include the lack of patient engagement in the design of the self-management intervention, along with the lack of a behavioural change theory to inform their design. Our future research will incorporate intervention frameworks to codevelop and evaluate a self-management intervention based on a sound behavioural theory involving our national patient partners, specialists, primary care providers and decision makers.
Diane Lorenzetti for providing support and direction regarding search strategies. We would also like to thank Sarah Gil in assisting us with acquiring full text studies.
Contributors All authors contributed to the research idea and study design. MD and BKK acquired the data. MD, BKK and BRH completed data analysis and interpretation. All authors contributed important intellectual content during manuscript drafting and revisions. They also read and approved the final manuscript. BRH and PR provided mentorship.
Funding MD is a recipient of the 2016 Alberta SPOR Graduate Studentships in Patent- Oriented Research. Alberta SPOR Graduate Studentships in Patient-Oriented Research are jointly funded by Alberta Innovates and the Canadian Institute of Health Research. BRH is supported by the Roy and Vi Baay Chair in Kidney Research, Canadian Institutes of Health Research’s Strategy for Patient-Oriented Research (SPOR).
Disclaimer The funding organisations had no role in the design and conduct of the study; data collection, analysis and interpretation or preparation, review or approval of the manuscript.
Competing interests None declared.
Patient consent Not required.
Provenance and peer review Not commissioned; externally peer reviewed.
Data sharing statement The following data will be available, study protocol and analysis plan, to anyone who wishes to access them and will be available immediately following publication from the corresponding author.
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