Self-Management Interventions for Facilitating Life Participation for Persons with Kidney Failure

Visual Abstract

Abstract

Background

For persons with kidney failure, life participation is a critically important outcome, strongly linked to quality of life and mortality. To support patients' self-management abilities, three domains are typically emphasized: medical management, emotional management, and management of everyday life (i.e., role management). Although role management is strongly linked to life participation, there is currently limited research on interventions designed to support it. We explored existing self-management interventions that aim to support everyday life functioning, rather than only medical management.

Methods

In this systematic review and qualitative meta-synthesis, we searched MEDLINE, Embase, CINAHL, PsycINFO, Web of Science, and CENTRAL up to April 2022 for interventional studies involving self-management interventions designed, at least partly, to support management of everyday life. The guidelines by Sandelowski and Barosso were used to analyze and synthesize the results. A taxonomy of everyday self-management strategies was used to further explore intervention content. Study quality was assessed using the Cochrane Collaboration risk-of-bias tools. Evidence of effectiveness was summarized, and a meta-analysis of eligible outcomes was conducted.

Results

Of 22,667 records, 53 studies were included in the meta-synthesis. Most self-management interventions focused on medical management. Included interventions involved strategies to support eight domains: Activities of daily living, Work and school life, Meaningful occupations, Leisure activities, Mobility and travel, Interpersonal relationships, Role functioning, and Social participation. Major interventions focused on providing education, skill training, counseling, and cognitive behavioral therapy. Evidence of effectiveness was reported across a wide range of patient-reported outcomes, including (health-related) quality of life, depression, and self-efficacy. Studies were geographically concentrated and were of moderate to low quality.

Conclusions

Despite its well-recognized importance, research on interventions to improve life participation mostly consisted of pilot and feasibility studies and studies of low quality. Interventions were reported heterogeneously, limiting comparability, and were restricted to specific regions and cultures, limiting generalizability.

Introduction

Life participation was identified by the Standardised Outcomes in Nephrology initiative as critically important for all persons with kidney failure.^1–3 Kidney failure and its treatment through KRT can have a significant effect on patients' ability to participate in the meaningful activities of life including work, study, family responsibilities, travel, and social and recreational activities.^4,5 Yet, as noted by the patient voices: “Dialysis is a treatment which keeps us alive to live a life, not just to wait for death.”⁵

So far, the traditional biomedical approach, which primarily focuses on treating physical symptoms and disease, has struggled to meaningfully improve patient-reported outcomes, in spite of the ever rising health care expenditures.^6,7 Consequently, a new approach to health care has emerged, one that places greater emphasis on supporting the priorities and values of patients.^3,5 Concepts, such as patient participation, shared decision making, patient empowerment, and the shift from patient-centered to person-centered care, have become increasingly appreciated as fundamental principles for sustainable health care.^5,8,9

A key element in this novel approach is supporting the self-management abilities of patients.¹⁰ Hitherto, self-management support is increasingly advocated to improve effectiveness on both the level of patient-reported outcomes and in reducing the economic burden associated with chronic conditions, such as kidney failure.^5,10,11

Self-management has been defined as the work that coincides with living with a chronic illness¹² and typically comprises three distinct tasks: (1) medical management or illness-related tasks (e.g., taking medication), (2) emotional management or biographical tasks (e.g., coping with difficult emotions linked to having a chronic illness), and (3) role management or everyday life tasks (e.g., achieving/maintaining normality and meaningful participation in everyday activities and roles).^12,13

Despite the recognized importance of life participation, there is limited evidence on self-management interventions designed to support everyday life functioning (i.e., role management). Therefore, we conducted a systematic review and qualitative meta-synthesis to synthesize the existing evidence on role management interventions for persons with kidney failure. Given the inconsistency in the literature on the definition of self-management, which tends to prioritize medical management,¹⁴ we used a highly sensitive strategy to tabulate and synthesize the existing interventions.

Methods

This systematic review was guided by the Cochrane Collaboration methodology¹⁵ and is reported consistent with the Preferred Reporting Items for Systematic Reviews and Meta-Analysis-2020 guidelines¹⁶ (Supplemental File 1). The protocol is registered in the International Prospective Register of Systematic Reviews (PROSPERO: CRD42022332492).

In view of our scope to identify all reported role management interventions, we included both randomized and nonrandomized interventional studies.

Search Strategy

An overview of the search strategy is described in Supplemental Appendix 1. The complete search strategy is described in Supplemental File 2.

Study Eligibility Criteria

Records were eligible for inclusion if they (1) reported an interventional study; (2) involved adults aged 18+ years with kidney failure; (3) included a self-management intervention designed to, at least in part, support the patient's ability to manage their everyday life; (4) the study analyzed patient-reported outcomes, outcomes related to life participation (e.g., employment status), or results of qualitative interviews; and (5) the study was reported in English, French, German, or Dutch.

Studies were excluded if (1) the intervention was exclusively focused on improving patients' medical management or treatment-related goals or (2) the intervention was designed to address psychological conditions or underlying cognitive processes (i.e., emotional management) but did not include content related to patients' abilities to manage their everyday life, such as setting daily life goals, planning activities, or improving social functioning.

Study Selection

The selection process is described in detail in Supplemental Appendix 2.

After removing duplicate records through EndNote, two authors (T. Moreels and J. Goethals) independently screened each record using Rayyan¹⁷ first on title and abstract and then on full text (κ-coefficient 0.86). Any disagreements were resolved through discussion by consulting the other authors.

Data Extraction

Role management content as described by the author(s) of each study was extracted independently by two authors (T. Moreels and T. Leune) from each intervention's summary. Subsequently, interventions were classified as predominantly supporting medical management, emotional management, role management, or a combination if deemed equal on two or more domains. Disagreements were resolved through discussion by consulting the other authors.

Furthermore, the following administrative data were extracted in duplicate (T. Moreels and J. Goethals) from each study: (1) study identification (first author, year of publication, title, and country), (2) general study characteristics (design, population, baseline number of participants, outcomes and outcome measures, and research materials), and (3) intervention characteristics (delivery mode, location, interventionists, intervention description and components, and timing of the intervention). Participant demographics and outcome data were extracted by the first author (T. Moreels).

Data Synthesis

Descriptive data were summarized into tables, see Supplemental File 3.

A qualitative meta-synthesis was conducted using the guidelines established by Sandelowski and Barroso.¹⁸ First, extracted role management content, intervention formats and components, and outcome measures were organized into domains and subdomains on the basis of their (descriptive) similarity, with the size of each domain determined by the frequency of its included content (some studies contributed multiple items to a single domain). Then, to assess the overall presence of the identified domains across the studies, we measured their relative occurrence. All results were triangulated, and adjudications were discussed during meetings with all authors. A detailed analysis of supported strategies was made using the Taxonomy of Everyday Self-management Strategies framework.¹⁹ Reported effectiveness of the interventions was summarized per outcome domain.

Risk of Bias Assessment

Risk of bias assessment was performed by two authors independently (T. Moreels and S. De Baets) using the Cochrane Risk of Bias-2 tool for randomized studies and the Risk of Bias in a Nonrandomized Study-I tool for nonrandomized studies.^20,21 Given the nature of patient-reported outcomes, we adapted the risk of bias measurement domain. See Supplemental File 4 for the adaptation. Any disagreements were resolved by consulting the other authors.

Data Analysis

Meta-analyses were performed by T. Moreels and E. Nagler using Review Manager, version 5.3.²² Data from eligible studies were combined by using a random-effects model, calculating a 95% confidence interval (CI) on the basis of standardized mean differences (SMDs). Statistical heterogeneity for the pooled results was measured using the I² statistic.

Results

A total of 22,667 potentially relevant records were identified through database searches. After duplicate removal, 16,690 records were screened by title and abstract for studies implementing a self-management intervention, resulting in an initial 701 records. Of these, 438 focused exclusively on medical management and were subsequently excluded, resulting in a selection of 263 records for full-text review. Only 53 studies included role management content and were included in this review. A Preferred Reporting Items for Systematic Reviews and Meta-Analysis flow diagram of the search results is shown in Figure 1.

Figure 1.

PRISMA flow diagram of the screening process. PRISMA, Preferred Reporting Items for Systematic Reviews and Meta-Analysis.

Study Characteristics

Study characteristics are provided in Table 1; a more detailed overview is presented in Supplemental Files 3, 10, and 11.

Table 1.

Characteristics of the studies

Characteristic	No. of Studies (%)
Design
Nonrandomized interventional study	22 (42)
Randomized interventional study	31 (58)
Modality
Hemodialysis	36 (68)
Kidney transplant	7 (13)
Peritoneal dialysis	2 (4)
Unspecified dialysis	2 (4)
Unspecified kidney failure/awaiting KRT	7 (13)
No. of participants
1–25	12 (23)
26–50	11 (21)
51–75	19 (36)
76–100	4 (8)
100+	7 (13)
Country
Iran	15 (28)
The United States	14 (26)
The Netherlands	3 (6)
Brazil	2 (4)
South Korea	2 (4)
Taiwan	2 (4)
Turkey	2 (4)
The United Kingdom	2 (4)
Othera	11 (21)

Percentages are rounded up to the nearest whole number.

^aAustralia, Canada, China, India, Israel, Italy, Mexico, Poland, Portugal, Spain, Sweden.

The included studies involved a total of 3168 persons with kidney failure (median 59 participants; range, 6–190; interquartile range=41) of whom 2002 were persons receiving hemodialysis, 545 kidney transplant recipients, 302 persons with unspecified kidney failure or awaiting KRT, 225 receiving peritoneal dialysis, and 94 receiving an unspecified dialysis modality (weighted average age [mean±SD]: 49±13 [Supplemental File 12]). Thirty-one studies were randomized interventional studies, 22 were nonrandomized. Study publication dates ranged from 1993 to 2022. The studies were highly concentrated geographically, mostly conducted in Iran and the United States (Table 1).

Intervention Characteristics

Interventions were delivered (1) individually (n=22, 42%); (2) in a group setting (n=22, 42%), of which six studies involved family members; (3) a mixed setting (n=5, 9%); or (4) through an online medium (n=1, 2%). Three studies (6%) did not provide information on delivery mode.

Forty-three studies were conducted in a hospital setting (81%), three studies (6%) were conducted in the home environment, six studies (11%) were conducted in a mixed setting (hospital, home, and online), and one study (2%) was delivered exclusively through an online medium.

The most frequently reported health care professionals providing the interventions comprised nurses and nurse practitioners (n=18, 34%); psychologists, psychotherapists, or mental therapists (n=18, 34%); social workers (n=9, 17%); physicians and physician specialists (n=6, 11%); occupational therapists (n=4, 8%); employment experts (n=3, 6%); and nutritionists (n=3, 6%). Peer experts were involved in eight studies (15%).

Qualitative Meta-synthesis

Role Management Content

Included role management content (i.e., content pertaining to support everyday life functioning/life participation), based on the study author(s) descriptions, was grouped into eight domains of similarity: (1) Activities of daily living, (2) Work and school life, (3) Meaningful occupations, (4) Leisure activities, (5) Mobility and travel, (6) Interpersonal relationships, (7) Role functioning, and (8) Social participation. See Figure 2 for a visual summary, Table 2 for their presence across the studies, Supplemental File 3 for the content per study, and Supplemental File 5 for the coding tree.

Figure 2.

Summary chart of reported role management content. A visual summary of role management content as reported in the included studies, grouped into domains of (descriptive) similarity. The size of each domain is determined by the frequency of its included content within the studies.

Table 2.

Presence of reported role management content across the studies

Role Management Categories	Reported in No. Studies (%)
Social participation	27 (51)
Communication skills	12 (23)
Leisure activities	15 (28)
Enjoyable activities	8 (15)
Arts and crafts	4 (8)
Outdoor activities	2 (4)
Role functioning	14 (26)
Managing family roles	6 (11)
Living new normal lives	2 (4)
Interpersonal relationships	14 (26)
Intimacy, sexuality	4 (8)
Relationship skills	2 (4)
Activities of daily living	13 (25)
Household work	6 (11)
Finances	2 (4)
Cooking	2 (4)
Work and school life	12 (23)
(Re-)employment	8 (15)
School	3 (6)
Mobility and travel	7 (13)
Travel	5 (9)
Meaningful activities and occupations	6 (11)
Community involvement	2 (4)
Volunteering	2 (4)
Meaningful activities	3 (6)

Percentages are rounded up to the nearest whole number.

Interventions Focused on Role Management Support as the Main Majority of Their Content

Eight (15%) interventions focused on role management support as the main majority of their content. These included three interventions focused on (re-)employment, two occupational therapy–based interventions focused on meaningful and leisure activities, one home visit program that included multiple interventions to support activities of daily living, one energy management program that focused on supporting life participation goals, and one online community to support young adults in restoring their social identities and regaining confidence in school and work.

Interventions Focused on Role Management Support as a Shared Majority of Their Content

Six (11%) interventions focused on a combination of role and emotional management support as a majority of their content. These included one intervention that provided educational supportive group therapy partially focused on preserving social roles and activities; one happiness training program that included focus on meaningful work, community involvement, and volunteering; one psychological empowerment program partially focused on activities, relationships, and work and school; one cognitive behavioral fatigue management intervention with included support to participate in everyday activities; one psychosocial quality-of-life intervention partially focused on relationship skills and life activities; and one intervention that provided group discussions with family to support family functioning.

Two (4%) interventions focused on a combination of role and medical management support as a majority of their content. These included one intervention focused on goal achievement on the basis of a comprehensive set of self-management domains and one exercise and educational intervention with an included focus on (re-)gaining employment.

Seven (13%) interventions included an equal combination of all three self-management domains. These included a self-management intervention using the Medical Outcomes Short Form-36 to set and follow up goals, one study implementing multiple interventions to support (re-)employment, one study implementing the Flinders Program, two studies implementing the Chronic Disease Self-management Program, one study reporting on social self-care as a third of its educational and group discussion content, and one study reporting on social self-care as a third of its content with no further information on formats or components.

Interventions Including Role Management Support as a Part of Their Content

Thirty (57%) interventions reported on content to support role management as a minor part of their content. Of these, 18 (34%) focused on emotional management as their main majority of content. These interventions generally used enjoyable activities and training in communication skills and social functioning to increase psychological well-being. Six (11%) interventions focused on medical management as the main majority of their content, and six (11%) interventions had a majority of their content centered on both medical and emotional management. For these interventions, content related to life participation varied, with different aspects included as a minor part depending on the specific intervention.

Intervention Formats, Components, and Supported Strategies

Most interventions used a variety of formats and components. All interventions provided at least some manner of information, with a large majority specifically reporting on providing education (n=37, 70%), skill training (e.g., goal setting, problem solving) (n=32, 60%), and counseling and (group) discussions (n=27, 51%). Cognitive behavioral therapy (n=17, 32%) was also provided in a large number of studies. Interventions were often supplemented by printed (n=17, 32%) and digital (n=17, 32%) materials or methods and homework or exercises (n=16, 30%). Energy management (n=6, 11%), time management (n=3, 6%), and pain management (n=2, 4%) strategies; environmental adaptations (n=7, 13%); and vocational training (n=5, 9%) were also provided. Interventions that were delivered in a group setting more frequently implemented role playing or modeling (n=7, 13%). See Supplemental File 3 for the included components per study and Supplemental File 6 for the coding tree. An overview of employed intervention strategies using the Taxonomy Framework of Everyday Self-management Strategies is provided in Table 3, and an overview per individual study is provided in Supplemental File 7.

Table 3.

Reported intervention strategies according to the Taxonomy of Everyday Self-management Strategies¹⁹

TEDSS: Reported Strategies	Reported in No. Studies (%)
Included process strategiesa
Goal oriented (e.g., problem solving, self-awareness)	49 (92)
Support oriented (e.g., information, education)	53 (100)
Included resource strategiesb
Self-advocating (e.g., self-efficacy, self-esteem)	48 (91)
Seeking and managing everyday support	33 (62)
Seeking and managing health and social care needs and paid support	36 (68)
Activities strategiesc
Pacing, planning, and prioritizing	10 (19)
Organizing routines and systems	11 (21)
Aids, physical adaptations, and strategies	18 (34)
Engaging in valued activities	23 (43)
Internal strategiesd
Acceptance	10 (19)
Staying positive	38 (72)
Controlling stress and negative emotions	31 (58)
Allowing time for sadness and grief	5 (9)
Seeking comfort in faith and spirituality	5 (9)
Social strategiese
Disclose condition	7 (13)
Choosing social relationships and situations	29 (55)
Staying in contact	31 (58)
Optimizing social interactions	34 (64)
Using humor	0 (0)
Health behavior strategiesf
Physical exercise and lifestyle	20 (38)
Mental exercise and relaxation	15 (28)
Diet and fluid management	16 (30)
Sleep hygiene	6 (11)
Disease controlling strategiesg
Managing medications and treatments	22 (42)
Preventing symptoms and complications	28 (53)
Using complementary medicine	1 (2)

Percentages are rounded up to the nearest whole number. TEDSS, The Taxonomy of Everyday Self-management Strategies.

^aStrategies used to be well informed and to make good decisions, often used to support use of other, nonprocess strategies.

^bProactively seeking, pursuing, and/or managing needed formal or informal supports and resources.

^cFinding ways to participate in everyday activities (leisure activities, work activities, household chores) despite problems such as fatigue, pain, cognitive loss, or disability.

^dPreventing and managing stress, negative emotions, and internal distress and creating inner calm.

^eManaging social interactions and relationships to be able to participate without exposure to negative reactions.

^fMaintaining a healthy lifestyle to enhance health and limit the risk of lifestyle-related illness.

^gPreventing, controlling, and limiting symptoms, complications, and/or disease progression.¹⁹ An overview of strategies per individual study is provided in Supplemental File 7.

Depth and Transparency of Reported Intervention Information

The depth and transparency of reported information regarding the employed formats and components was heterogeneous across the studies. Nearly half of the studies did not refer to a published intervention protocol, manual, theoretical framework, or model (n=22, 42%), or they referred only to a theoretical model or framework without providing further information on how the intervention was designed (n=11, 21%). Other studies stated they adapted an existing manual or intervention (n=10, 19%), although it was not always clear which adaptations were made. Three studies (6%) implemented a well-established existing self-management program, and two studies (4%) reported that the intervention manual could be provided on request. Only five studies (9%) referred to a published intervention protocol in which the intervention as implemented was expanded upon. Reported information on the included interventions did not appear to evolve notably positively over time (Supplemental File 9).

Outcomes and Outcome Measures

Patient-reported and life participation outcomes were measured using 108 unique instruments, with life participation measured in nine studies using 12 unique instruments. Employment status and clinical interviews were also used to assess life participation. Overall, life participation was mostly measured as part of comprehensive assessments. See Supplemental File 3 for the outcomes and measures per study and Supplemental File 8 for their frequency per outcome domain.

Risk of Bias Analysis

Supplemental File 4 summarizes the risk of bias assessments of the individual studies, and only three studies reported a low risk of bias across all measurement domains. Despite an increase in the number of randomized versus nonrandomized studies over time, overall risk of bias remained moderate to high (Supplemental File 9).

Effectiveness across Outcome Domains

The included interventions appeared to be effective across a range of reported outcome domains. Table 4 presents a comprehensive summary of the assessed outcome domains, including reported statistically significant positive changes per study design. For a comprehensive overview of measurements per randomized study, see Supplemental File 10, and for nonrandomized study information, see Supplemental File 11.

Table 4.

Presence of measured outcomes across the studies

Reported Statistical Significance Changes	Health-Related QOL	Psychological Well-Beinga: Depression	Anxiety	Otherb	Biomedical Outcomes	Self-Efficacyc	Self-Management	Life Participationd	Symptoms and Comorbiditye	Fatigue	Social Supportf	Copingg	Patient Satisfactionh	Health Literacy and Promotion
Randomized studies (n=31)
No. (%)	17 (55)	12 (39)	8 (26)	9 (29)	5 (16)	7 (23)	3 (10)	5 (16)	4 (13)	2 (6)	4 (13)	2 (6)	2 (6)	1 (3)
Significant changei	10 (59)	8 (67)	5 (63)	9 (100)	4 (80)	6 (86)	1 (33)	3 (60)	2 (50)		4 (100)	2 (100)	2 (100)	1 (100)
No change	3 (18)	4 (33)	3 (38)					1 (20)	1 (25)
Inconclusivej	4 (24)				1 (20)	1 (14)	2 (67)	1 (20)	1 (25)	2 (100)
Nonrandomized studies (n=22)
No. (%)	13 (59)	5 (23)	5 (23)	4 (18)	7 (32)	4 (18)	7 (32)	4 (18)	3 (14)	1 (5)	3 (14)	1 (5)	1 (5)	2 (9)
Significant changei	7 (54)	1 (20)	4 (80)	2 (50)	1 (14)	2 (50)	2 (29)				1 (33)	1 (100)	1 (100)	2 (100)
No change	2 (15)	3 (60)	1 (20)	1 (25)	3 (43)	2 (50)	1 (14)		2 (67)	1 (100)	1 (33)
Inconclusivej	4 (31)	1 (20)		1 (25)	3 (43)		4 (57)	4 (100)	1 (33)		1 (33)

Percentages are rounded up to the nearest whole number. QOL, quality of life.

^aIndividual scores from multidimensional scales that specifically measure depression, anxiety, or other psychological subscales are separated and presented within their corresponding domains.

^bIncluding stress, cognitive distortion, personality disorders, mood, competence, adaptation, self-transcendence, psychological empowerment, psychosocial adjustment to illness, feelings after kidney transplantation, and number of unhealthy mental health days.

^cIncluding self-esteem, mastery.

^dIncluding employment status, activities of daily living, functional performance, intimacy, leisure activities, independence status, and reintegration to normal living.

^eIncluding physical symptoms, pain, frequency of symptoms, impact of symptoms, and comorbidity.

^fIncluding social adjustment.

^gIncluding perceived self-control.

^hIncluding life satisfaction.

ⁱAt least 50% of the (sub)scales within this outcome domain in the study show a statistically significant positive change (P < 0.05) against the control group or against baseline values if no control group values are provided.

^jLess than 50% of the (sub)scales show a significant change, or the reported data are insufficient to determine a statistically significant change.

Meta-Analysis of Specific Outcome Domains

From the 31 randomized studies, similar patient-reported outcomes that were reported in at least two studies were eligible for meta-analysis, provided they included mean and SDs of prevalues and postvalues for both the intervention and control groups. Figures 3 and 4 display forest plots of eligible outcomes using change scores.

Figure 3.

Forest plots based on change scores for the outcomes (health-related) QOL, including physical and mental component summaries and self-efficacy. Baseline to postintervention measurements within a 6- to 12-week time frame, with the selected data point closest to the 12-week mark following the commencement of the intervention. CI, confidence interval; IV, intravenous; QOL, quality of life.

Figure 4.

Forest plots based on change scores for the outcomes depression and anxiety. Baseline to postintervention measurements within a 5- to 12-week time frame, with the selected data point closest to the 12-week mark following the commencement of the intervention.

Interventions appeared to have a large positive effect on self-efficacy (three studies; 162 participants; SMD, 1.77; 95% CI, 0.54 to 3.01; P < 0.01), a moderately positive effect on (health-related) quality of life (seven studies; 361 participants; SMD, 0.64; 95% CI, 0.40 to 0.87; P < 0.01), the mental component summary (seven studies; 527 participants; SMD, 0.56; 95% CI, 0.26 to 0.86; P < 0.01), and depression (eight studies; 638 participants; SMD, −0.58; 95% CI, −0.88 to −0.28; P < 0.01), and a minor positive effect on the physical component summary (six studies; 467 participants; SMD, 0.25; 95% CI, 0.06 to 0.50; P = 0.01). No statistically significant effect was found for anxiety (four studies; 365 participants; SMD, −0.51; 95% CI, −1.14 to 0.12; P = 0.12). Heterogeneity, most likely due to difference in interventions and participants, was statistically significant for self-efficacy (I²=90%, P < 0.01), the mental component summary (I²=60%, P = 0.02), depression (I²=69%, P < 0.01), and anxiety (I²=86%, P < 0.01).

Discussion

With this systematic review, we aimed to provide an overview and synthesis of existing self-management interventions designed, at least in part, to support life participation for persons with kidney failure. Despite our search strategy focusing on patient-reported outcomes and life participation, the majority of self-management interventions focused exclusively on medical management and did not include role management content. We ultimately identified 53 studies that included role management support within the following eight domains: (1) Activities of daily living, (2) Work and school life, (3) Meaningful occupations, (4) Leisure activities, (5) Mobility and travel, (6) Interpersonal relationships, (7) Role functioning, and (8) Social participation. Overall, role management support was mostly reported as only part of the intervention content and was generally focused on specific subdomains tailored to the (perceived) needs of the target group under study. Despite its critical importance, content pertaining to directly support life participation appears underrepresented in current self-management interventions.

The included studies reported a diverse range of formats, components, and strategies, which poses a challenge when attempting to conduct a comparative effectiveness analysis of the employed interventions. Although the interventions showed promise, with several still in a pilot or feasibility stage, many lacked detailed information, hampering replicability. In addition, studies were primarily conducted in single-center settings within specific geographic regions, limiting generalizability. Despite the presence of some higher-quality studies, overall study quality tended to range from moderate to low, with no discernible improvements observed over time in either the study quality or the reported information about the interventions employed. In addition, although a number of interventions appeared effective, the substantial heterogeneity among the included studies and interventions warrants caution when interpreting the results.

Most interventions (81%) were programmed as in-hospital activities, whereas only 6% were organized in the patient's home. Such a tendency to focus on a medical approach is also found in other areas such as during the transition from pediatric to adult health care services²³ or in palliative care medicine. To date, self-management interventions appear narrowly focused on the medical aspects of self-management, with a direct focus on adherence to treatment and monitoring symptoms and side effects or an indirect focus on diet, physical rehabilitation, and lifestyle changes.^10,24 The major intention of these interventions is to prolong life and reduce exposure to health care services by motivating patients to follow the recommended medical therapy.²⁵ All of these aspects are useful and worthwhile in themselves and may be necessary prerequisites for a meaningful and qualitative life. For example, returning to a professional job, an aspect of life participation, is only possible in a sustainable way if the general health condition is stable or under control. However, it is also clear that these aspects are insufficient on their own to reach the goal of meaningful life participation. The latter also requires exploring which activities are meaningful to the person in the first place and providing support to remove obstacles imposed by the disease to achieve them. This is an important area of study as life participation has been shown as a significant predictor of both graft loss and mortality for kidney transplant recipients.²⁶ For persons receiving hemodialysis, the ability to cope with their condition is associated with longer survival and improvements in physical functioning and mental health, while functional dependence is a consistent predictor of patient-reported outcomes and mortality.^27–29

A substantially lesser amount of studies pertained solely to emotional management support, without clear focus on life participation. The included studies with a major focus on emotional management, which did report content pertaining to life participation, mostly employed enjoyable activities and training in communication skills and social functioning to increase psychological well-being. Management of emotions is an important aspect of holistic care and often facilitates participation in life activities.³⁰ However, for persons with a chronic condition, to truly (re)gain a sense of control typically requires (at least some) active engagement in everyday activities.^13,28,31

Overall, the included studies encompassed a wide range of demographics, with some interventions specifically focused on distinct age groups, sociodemographic backgrounds, or unique situations—such as aiding people in regaining life participation after experiencing a catastrophic event. However, there appeared to be some research gaps regarding younger and older adults (Supplemental File 12). Because life participation needs can vary greatly and are often tied to specific diseases and situations, the potentially adaptable models tailored to persons living with kidney failure found within this review could be valuable to guide future interventions and strategies.^32–35

Simultaneously, the overall lack of high-quality evidence and heterogeneity in reporting also demonstrates the need to develop interventions within this highly relevant domain through high-quality and open development processes and trials, for the benefit of identifying which development strategies, components, and content could be most effective to support life participation for people living with kidney failure, within and across treatment modalities.³⁶ To date, research is still inconclusive on which specific components of self-management interventions may lead to increased effectiveness for people with chronic conditions.^37–39

In addition, to ensure that relevant outcomes are pursued and accurately measured, there is a need for adequate outcome measures that can assess the specific life participation needs of people with kidney failure.^34,40,41 One existing tool that could be valuable for informing both research and clinical practice is the “ZElfmanagement Na Niertransplantatie” (ZENN) tool. Originally developed in Dutch, the name translates to “self-management after kidney transplantation.” This tool assesses multiple self-management life domains relevant to individuals with kidney failure.⁴² Furthermore, despite not being specifically validated with people living with kidney failure, the Taxonomy of Everyday Self-management Strategies framework could assist in designing intervention content of self-management interventions that aim to (also) support role management and emotional management.¹⁹

In conclusion, although the importance of life participation is well recognized, current research on interventions aimed at improving it primarily consists of pilot and feasibility studies and studies of moderate to low quality. Existing interventions also often lacked in-depth descriptions and tended to be geographically focused, presenting a significant obstacle to their implementation in clinical settings. Simultaneously, the diverse nature of the included interventions offers a wide range of potentially adaptable models to guide future interventions. The synthesis included within this review may be valuable to inform and catalyze further research.

Supplementary Material

cjasn-19-189-s001.pdf ^{(3.4MB, pdf)}

Disclosures

S. De Baets reports consultancy for University of Antwerp (Belgium). All remaining authors have nothing to disclose.

Funding

None.

Author Contributions

Conceptualization: Patricia De Vriendt, Timothy Moreels, Wim Van Biesen, Dominique Van de Velde, Karsten Vanden Wyngaert.

Data curation: Timothy Moreels.

Formal analysis: Stijn De Baets, Justine Goethals, Tamara Leune, Timothy Moreels, Evi Nagler, Wim Van Biesen.

Investigation: Stijn De Baets, Justine Goethals, Tamara Leune, Timothy Moreels, Wim Van Biesen.

Methodology: Patricia De Vriendt, Timothy Moreels, Evi Nagler, Wim Van Biesen, Dominique Van de Velde, Karsten Vanden Wyngaert.

Supervision: Patricia De Vriendt, Evi Nagler, Wim Van Biesen, Dominique Van de Velde, Karsten Vanden Wyngaert.

Validation: Patricia De Vriendt, Evi Nagler, Wim Van Biesen, Dominique Van de Velde, Karsten Vanden Wyngaert.

Writing – original draft: Timothy Moreels.

Writing – review & editing: Stijn De Baets, Patricia De Vriendt, Justine Goethals, Tamara Leune, Evi Nagler, Wim Van Biesen, Dominique Van de Velde, Karsten Vanden Wyngaert.

Data Sharing Statement

All data are included in the manuscript and/or supporting information.

Supplemental Material

This article contains the following supplemental material online at http://links.lww.com/CJN/B826.

Supplemental File 1. PRISMA checklist.

Supplemental File 2. Search strategy.

Supplemental File 3. Table of included studies: study and intervention characteristics.

Supplemental File 4. Risk of bias.

Supplemental File 5. Frequency of role management content.

Supplemental File 6. Frequency of intervention formats and components.

Supplemental File 7. Included strategies according to the “Taxonomy of Everyday Self-management Strategies.”

Supplemental File 8. Frequency of outcomes and outcome measures.

Supplemental File 9. Overtime developments.

Supplemental File 10. Table of effectiveness and demographics: randomized studies.

Supplemental File 11. Tables of effectiveness and demographics: nonrandomized studies.

Supplemental File 12. Distribution of age groups across the studies.

Supplemental Appendix 1. Search strategy.

Supplemental Appendix 2. Study selection: additional information.