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1 Donald M, et al. BMJ Open 2018;8:e019814. doi:10.1136/bmjopen-2017-019814 Open Access Self-management interventions for adults with chronic kidney disease: a scoping review Maoliosa Donald, 1,2,3 Bhavneet Kaur Kahlon, 3 Heather Beanlands, 4 Sharon Straus, 5,6 Paul Ronksley, 2,3 Gwen Herrington, 7 Allison Tong, 8 Allan Grill, 9 Blair Waldvogel, 7 Chantel A Large, 7 Claire L Large, 7 Lori Harwood, 10 Marta Novak, 11,12 Matthew T James, 1,2,3 Meghan Elliott, 6 Nicolas Fernandez, 7 Scott Brimble, 13 Susan Samuel, 14 Brenda R Hemmelgarn 1,2,3 To cite: Donald M, Kahlon BK, Beanlands H, et al. Self-management interventions for adults with chronic kidney disease: a scoping review. BMJ Open 2018;8:e019814. doi:10.1136/ bmjopen-2017-019814 Prepublication history and additional material for this paper are available online. To view these files, please visit the journal online (http://dx.doi. org/10.1136/bmjopen-2017- 019814). Received 5 October 2017 Revised 22 January 2018 Accepted 24 January 2018 For numbered affiliations see end of article. Correspondence to Dr Brenda R Hemmelgarn; Brenda.Hemmelgarn@alber tahealthservices.ca Research ABSTRACT Objective To systematically identify and describe self- management interventions for adult patients with chronic kidney disease (CKD). Setting Community-based. 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. INTRODUCTION  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, cardiovas- cular 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 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 in- vestigated 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 stan- dardised 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, physiolog- ical 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. on January 13, 2020 by guest. Protected by copyright. http://bmjopen.bmj.com/ BMJ Open: first published as 10.1136/bmjopen-2017-019814 on 22 March 2018. Downloaded from

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Page 1: Open Access Research Self-management interventions for ... · kidney disease (CKD). setting Community-based. Participants Adults with CKD stages 1–5 (not requiring kidney replacement

1Donald M, et al. BMJ Open 2018;8:e019814. doi:10.1136/bmjopen-2017-019814

Open Access

Self-management interventions for adults with chronic kidney disease: a scoping review

Maoliosa Donald,1,2,3 Bhavneet Kaur Kahlon,3 Heather Beanlands,4 Sharon Straus,5,6 Paul Ronksley,2,3 Gwen Herrington,7 Allison Tong,8 Allan Grill,9 Blair Waldvogel,7 Chantel A Large,7 Claire L Large,7 Lori Harwood,10 Marta Novak,11,12 Matthew T James,1,2,3 Meghan Elliott,6 Nicolas Fernandez,7 Scott Brimble,13 Susan Samuel,14 Brenda R Hemmelgarn1,2,3

To cite: Donald M, Kahlon BK, Beanlands H, et al. Self-management interventions for adults with chronic kidney disease: a scoping review. BMJ Open 2018;8:e019814. doi:10.1136/bmjopen-2017-019814

► Prepublication history and additional material for this paper are available online. To view these files, please visit the journal online (http:// dx. doi. org/ 10. 1136/ bmjopen- 2017- 019814).

Received 5 October 2017Revised 22 January 2018Accepted 24 January 2018

For numbered affiliations see end of article.

Correspondence toDr Brenda R Hemmelgarn; B rend a.He mmel garn @ alber tahealthser vices. ca

Research

AbstrACtObjective To systematically identify and describe self-management interventions for adult patients with chronic kidney disease (CKD).setting Community-based.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.

IntrOduCtIOn  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, cardiovas-cular 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

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 in-vestigated 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 stan-dardised 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, physiolog-ical 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.

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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 associ-ated 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-man-agement 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 effec-tiveness of self-management interventions. Prior system-atic 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 interven-tions and outcomes). In particular, features of self-man-agement interventions such as person centeredness, applicability to comorbidities associated with CKD, physi-ological 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 interven-tions 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, quali-tative and mixed methods research regarding self-manage-ment 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 MethOdsWe 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 compre-hensive inclusion of the literature and continued mean-ingful 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.

research aimOur 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 studiesWe 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 summa-ries. Using the Canadian Agency for Drugs and Tech-nology (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,

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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 identi-fied 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-system-atic 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 exer-cise 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 dataWe 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 inter-vention 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), popu-lation 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 partnersPatient partners were engaged throughout this work, specifically to provide input on the research ques-tion, search strategies (eg, grey literature sources) and reviewing the final results. The results were presented and discussed at the national Can-SOLVE CKD meeting.

resultssearch resultsFrom 12 583 unique citations (figure 1), we included 50 full text studies.21–70

description of studiesA 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 coun-tries, including the USA (20%), UK (14%) and Australia (12%). Most studies were published in the last 5 years (64%).

Patient population characteristicsThe target population in most studies was CKD (72%) and 15 studies mentioned CKD plus one or more asso-ciated comorbidities. The average ages of participants reported across studies were 50.2 to 74.3 years.

description of self-management interventionsTable 2 summarises the characteristics of the self-man-agement interventions. Five studies reported the same self-management intervention;21–25 therefore, 45 inter-ventions were summarised. The most common inter-vention 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

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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 inter-vention language (53%), but 12 languages were repre-sented 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 resultsCharacteristics 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 interven-tion specific and 1 was symptom management.

description of qualitative study outcomes and resultsTable 5 summaries the findings from six qualitative studies that explored patient perspectives, one of these being a mixed methods study. All studies used semistruc-tured interviews and one also used a questionnaire. The aims of all these studies were to examine patient perspec-tives’ 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).

dIsCussIOnTo 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 interven-tions and describe their features. We identified 50 studies that investigated self-management interventions for adults with CKD, with considerable variation in interven-tions, outcomes assessed and results obtained (ie, some improved and/or some worsened and/or some did not

Figure 1 Prisma flow diagram.

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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 predomi-nately 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-manage-ment 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

Table 1 Characteristics of the studies included in scoping review

CharacteristicStudies (n=50)

Study design

Randomised controlled trial 19

Pre-post test 13

Quasi-experimental (controlled/non-random) 7

Observational 5

Qualitative 5

Mixed methods 1

Origin of study

USA 10

UK 7

Australia 6

Canada 5

Taiwan 5

Netherlands 3

Spain 3

Italy 2

Japan 2

New Zealand 2

Sweden 2

Brazil 1

Denmark 1

Korea 1

Year of publication

2012–2016 32

2007–2011 11

Prior 7

Table 2 Overall characteristics of self-management interventions

VariableIntervention count (n=45)

Intervention topics

Diet/nutrition 29

General CKD knowledge 18

Other (ie, advanced care planning, meditation)

18

Medication 17

Modalities 13

Physical activity 13

Comorbidities 11

Symptom management 6

Lifestyle 5

Mode of delivery

Face to face (ie, group, one-on-one) 36

Multiple modes 32

Print 29

Distance (ie, telephone, email) 13

Digital (ie, DVD, PowerPoint, audio recording)

8

Electronic (ie, website, mobile application)

7

Type of providers

Other* 25

Nurse/nurse practitioner 22

Dietitian 14

Multiple providers 13

Social worker 6

Physician/primary care physician 6

Nephrologist/nephrology fellows 5

Patient volunteer/mentor 4

Pharmacist 1

Location of intervention

Outpatient 23

Not specified 12

Community (non-clinic)† 10

Patient home 10

Multiple locations 7

Inpatient 1

Intervention languages

Not Specified 24

English 10

Multiple languages 7

Mandarin 4

Spanish 3

Taiwanese 3

Continued

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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 infor-mation 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 encom-pass 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-di-alysis 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 expan-sion 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 essen-tial principles to self-management (eg, accessing rele-vant health information, adhering to multiple treatment

VariableIntervention count (n=45)

Dutch 2

Cantonese 1

French 1

Greek 1

Italian 1

Japanese 1

Swedish 1

Vietnamese 1

Intervention development

Use of framework or theory 9

Codesigned with patients 4

*Other providers: Trained research assistant, lay health worker, Bengali worker, Educators (health, cook, diabetic), online tool, physician assistant, exercise physiologist, technician, psychologist, employment expert, instructor, interpreter, physiotherapist, patient, principal investigator.†Community: gym, grocery store, "study room". CKD, chronic kidney disease.

Table 2 Continued

Table 3 Summary of quantitative study outcomes*

Common outcomes DescriptionNumber of studies

Number of studies in which outcome improved

Physiological measures

Changes in laboratory tests, blood pressure, body composition, functional/performance tests and cardiovascular risk

23 9

Cognitions Changes in general CKD knowledge, self-efficacy, self-management, motivation, perceived stress, anxiety and fear

21 15

Behaviours Adherence to diet, medication, physical activity, sleep, blood pressure control

13 8

Individual outcomes QOL, well-being and general satisfaction 11 8

Intervention specific Reporting of general concepts regarding feasibility of intervention, enjoyment and interest in intervention

9 4

Healthcare Measurements of cost effectiveness, healthcare utilisation and access

5 4

Health status Measurements of morbidity and mortality (ie, time to dialysis, survival, all-cause mortality)

5 5

Symptoms Changes in overall symptoms (ie, pain, fatigue) 2 1

*Based on primary and distal outcomes from Grey et al.6

CKD, chronic kidney disease; QOL, quality of life.

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klet

Ind

ivid

ual s

lide

pre

sent

atio

n (7

5 m

in)

Dur

atio

n—on

e se

ssio

nC

omp

arat

or: s

tand

ard

car

e

Hea

lth s

tatu

s:

►D

urat

ion

bet

wee

n se

ssio

n an

d

dia

lysi

s in

itiat

ion—

pat

ient

in

E g

roup

sur

vive

d 4

.6 m

onth

s lo

nger

w/o

req

uirin

g R

RT

Gill

is e

t al

(1

995)

35R

CT

CK

D 3

–584

0(u

ncle

ar)

Age

: NR

Die

t/nu

triti

onD

ietic

ian

Prin

t

►Fa

ce t

o fa

ce‘M

odifi

catio

n of

die

t in

ren

al d

isea

se’:

‘Kee

pin

g Tr

ack’

boo

klet

Mon

thly

mee

ting

with

die

ticia

n

►P

rote

in W

ise

Cou

nter

(lis

ts p

rote

in c

onte

nt

of fo

ods)

‘Sho

pp

ing

Wis

e’: a

gui

de

to c

onve

nien

ce

and

fast

food

s

►V

isite

d r

esta

uran

ts a

nd s

hop

sD

urat

ion—

26 m

onth

sC

omp

arat

or: s

tand

ard

pro

tein

die

t

Cog

nitio

ns:

Pat

ient

rel

ianc

e on

die

ticia

n’s

feed

bac

k, s

upp

ort

and

m

odel

ling

stra

tegi

es—

dec

reas

ed o

ver

time

in

E g

roup

Ind

ivid

ual o

utco

mes

:

►To

p r

ated

inte

rven

tions

by

pat

ient

s—co

unse

lling

, sel

f-m

onito

ring,

pro

tein

cou

nter

Dev

ins

et a

l (2

003)

36

RC

TC

KD

(cre

atin

ine<

300

μmol

/L a

nd d

eem

ed t

one

ed R

RT

in

6–18

mon

ths)

297

(E=

149,

C=

148)

Age

: 58.

6

Gen

eral

CK

D k

now

led

ge

►D

iet/

nutr

ition

Med

icat

ion

Mod

aliti

es

►Li

fest

yles

Soc

ial w

orke

r

►P

rint

Face

to

face

Tele

pho

ne

‘Psy

choe

duc

atio

n’:

60-p

age

boo

klet

90 m

in in

tera

ctiv

e ed

ucat

iona

l int

erve

ntio

n p

erso

nalis

ed fo

r ea

ch p

atie

nt

►S

upp

ortiv

e (1

0 m

in m

ax) p

hone

cal

ls Q

3 w

eeks

Dur

atio

n—18

mon

ths

or in

itiat

ion

of R

RT

Com

par

ator

: sta

ndar

d c

are

Hea

lth s

tatu

s:

►Ti

me

to d

ialy

sis—

E g

roup

ha

d 3

mon

th d

elay

in d

ialy

sis

com

par

ed w

ith C

gro

up

Dev

ins

et a

l (2

005)

37

RC

TC

KD

with

pro

gres

sive

red

uctio

n in

kid

ney

func

tion

335

(E=

172,

C=

163)

Age

: 47.

4–53

.9

Gen

eral

CK

D K

now

led

ge

►D

iet/

nutr

ition

Mod

aliti

es

Hea

lth e

duc

ator

Prin

t

►Fa

ce t

o fa

ce

►P

ower

Poi

nt s

lides

‘Psy

choe

duc

atio

n se

ssio

n’:

22-p

age

boo

klet

Ind

ivid

ual s

lide

pre

sent

atio

n (6

0–75

min

long

)D

urat

ion—

one

visi

tC

omp

arat

or: s

tand

ard

car

e

Hea

lth s

tatu

s:

►S

urvi

val p

red

ialy

sis

and

aft

er

dia

lysi

s in

itiat

ion—

sign

ifica

ntly

lo

nger

in t

he E

gro

up

(2.2

5 ye

ars

and

8 m

onth

s,

resp

ectiv

ely)

Cam

pb

ell e

t al

(2

008)

38

RC

TC

KD

4–5

47 (E=

24,

C=

23)

Age

: 68.

5–72

.6

Die

t/nu

triti

on

►O

ther

(ie,

sel

f-m

anag

emen

t p

rinci

ple

s)

Die

ticia

n

►Fa

ce t

o fa

ce

►Te

lep

hone

‘Ind

ivid

ual n

utrit

iona

l cou

nsel

ling’

:

►In

itial

ind

ivid

ual c

onsu

ltatio

n w

ith d

ietic

ian

Then

pho

ne fo

llow

-up

Q2

wee

ks x

1 m

onth

th

en Q

1 m

onth

Dur

atio

n: 1

2 w

eeks

Com

par

ator

: sta

ndar

d c

are

Ind

ivid

ual o

utco

mes

:

►Q

OL—

man

y co

mp

onen

ts

of K

DQ

OLS

F V.

1.3

imp

rove

d: C

KD

sym

pto

ms,

co

gniti

ve fu

nctio

n, v

italit

y

Phy

siol

ogic

al m

easu

res:

Nut

ritio

nal a

sses

smen

t P

G-S

GA

—in

E g

roup

tho

se

who

wer

e m

alno

uris

hed

at

bas

elin

e im

pro

ved

, in

C g

roup

m

alno

uris

hed

from

12.

5%–2

5%

Byr

ne e

t al

(2

011)

26

RC

TC

KD

1–4

+H

TN81 (E

=40

,C

=41

)A

ge: 6

2.8–

65.4

Com

orb

iditi

es (i

e, H

TN

man

agem

ent)

Nur

se

►P

rint

Face

to

face

Tele

pho

ne

‘Str

uctu

red

ed

ucat

ion

sess

ion’

:

►Le

aflet

on

HTN

man

agem

ent

CH

EE

RS

pat

ient

ed

ucat

ion

inte

rven

tion

and

st

and

ard

car

e

►2.

5-ho

ur g

roup

ses

sion

Pho

ne s

upp

ort

from

nur

seD

urat

ion:

one

ses

sion

Com

par

ator

: sta

ndar

d c

are

Inte

rven

tion

spec

ific:

Feas

ibili

ty (r

ecru

itmen

t,

rete

ntio

n, p

atie

nt s

atis

fact

ion,

p

atie

nt a

cces

s of

ad

diti

onal

su

pp

ort)—

find

ings

sug

gest

d

eliv

erin

g/ev

alua

ting

an

effe

ctiv

e st

ruct

ured

gro

up

educ

atio

nal i

nter

vent

ion

to

pro

mot

e b

ette

r B

P c

ontr

ol

wou

ld b

e ch

alle

ngin

g

Con

tinue

d

on January 13, 2020 by guest. Protected by copyright.

http://bmjopen.bm

j.com/

BM

J Open: first published as 10.1136/bm

jopen-2017-019814 on 22 March 2018. D

ownloaded from

Page 8: Open Access Research Self-management interventions for ... · kidney disease (CKD). setting Community-based. Participants Adults with CKD stages 1–5 (not requiring kidney replacement

8 Donald M, et al. BMJ Open 2018;8:e019814. doi:10.1136/bmjopen-2017-019814

Open Access

Stu

dy

and

ye

ar(R

efer

ence

)D

esig

nTa

rget

po

pul

atio

nS

tud

y si

zeA

ge

(yea

rs)

Inte

rven

tio

n to

pic

(s)

Pro

vid

er(s

)D

eliv

ery

form

atD

escr

ipti

on

of

inte

rven

tio

nS

tud

y o

utco

mes

Stu

dy

resu

lts

Che

n et

al

(201

1)39

RC

TC

KD

3–5

54 (E=

27,

C=

27)

Age

: 68.

2

Gen

eral

CK

D k

now

led

ge

►D

iet/

nutr

ition

Med

icat

ion

Life

styl

e

►M

odal

ity in

form

atio

n fo

r st

age

IV

Nur

se, d

ietic

ian,

ne

phr

olog

ist,

p

eers

, vol

unte

ers

Prin

t

►Fa

ce t

o fa

ce

►Te

lep

hone

‘Sel

f-m

anag

emen

t S

upp

ort’

:

►In

div

idua

l mon

thly

hea

lth e

duc

atio

n

►W

eekl

y te

lep

hone

bas

ed s

upp

ort

Aid

of s

upp

ort

grou

p t

wic

e m

onth

ly (5

–10

pat

ient

s)D

urat

ion:

12

mon

ths

Com

par

ator

: sta

ndar

d c

are

Phy

siol

ogic

al m

easu

res:

eGFR

cha

nge—

high

er in

E

grou

p

►eG

FR r

educ

tion

of >

50%

less

in

E g

roup

ES

RD

req

uirin

g R

RT

and

all-

caus

e m

orta

lity—

no s

igni

fican

t d

iffer

ence

bet

wee

n gr

oup

s

Hea

lth s

tatu

s:

►#

of h

osp

italis

atio

ns in

1 y

ear

of fo

llow

-up

—le

ss in

E g

roup

Fles

her

et a

l (2

011)

40R

CT

CK

D 3

–4+

HTN

40 (E=

23,

C=

17)

Age

: 63.

4

Die

t/nu

triti

on

►P

hysi

cal a

ctiv

ityN

urse

, exe

rcis

e p

hysi

olog

ist,

d

ietic

ian,

coo

k ed

ucat

or

Prin

t

►Fa

ce t

o fa

ce‘C

ooki

ng a

nd e

xerc

ise

clas

s’:

Sta

ndar

d c

are

and

:

►G

roup

CK

D n

utrit

ion

clas

s (w

ith d

ietic

ian

and

co

ok e

duc

ator

: 2 h

our

sess

ions

ove

r 4

wee

ks)

plu

s on

e sh

opp

ing

tour

led

by

a d

ietic

ian

CK

D c

ookb

ook

12-w

eek

exer

cise

pro

gram

me

(3 ×

1 h

our

sess

ions

/wee

k) le

d b

y a

cert

ified

exe

rcis

e p

hysi

olog

ist

and

nur

seD

urat

ion:

12

wee

ksC

omp

arat

or: s

tand

ard

car

e

Phy

siol

ogic

al m

easu

res:

Imp

rove

men

t in

4/5

of t

he

follo

win

g: u

rinar

y p

rote

in, t

otal

ch

oles

tero

l, eG

FR d

eclin

e,

BP,

urin

ary

sod

ium

—w

as

cons

ider

ed a

suc

cess

—61

% in

E

gro

up v

s 12

% in

C g

roup

Beh

avio

urs:

SM

sco

re—

som

e ch

ange

s in

som

e co

mp

onen

ts in

bot

h gr

oup

s

Job

oshi

et

al

(201

2)41

RC

TC

KD

31 (E=

19,

C=

12)

Age

: 69.

8

Oth

erN

urse

Face

to

face

Tele

pho

ne

►E

mai

l

‘EA

SE

(enc

oura

ge a

uton

omou

s se

lf-en

richm

ent)

pro

gram

me’

:

►N

urse

s lis

ten

to w

hat

pat

ient

s ha

ve d

ifficu

lties

an

d d

iscu

ss h

ow t

hey

will

try

to

imp

rove

Face

to

face

inte

rvie

w m

onth

ly

►Te

lep

hone

or

emai

l con

tact

eve

ry 2

wee

ksD

urat

ion:

12

wee

ksC

omp

arat

or: s

tand

ard

car

e

Cog

nitio

ns:

Sel

f-ef

ficac

y

Beh

avio

urs:

Med

icat

ion

adhe

renc

e

► A

dhe

renc

e to

BP

and

wei

ght

mea

sure

men

ts

Lim

iting

sal

t in

take

Alc

ohol

con

sum

ptio

n

► S

mok

ing

Phy

siol

ogic

al m

easu

res:

BP

Will

iam

s et

al

(201

2)42

RC

TC

KD

2–4

(dia

bet

icki

dne

y d

isea

se)+

DM

+H

TN

75 (E=

39,

C=

41)

Age

: 67

Med

icat

ion

Com

orb

iditi

esN

urse

Prin

t

►Fa

ce t

o fa

ce

►Te

lep

hone

DV

D

‘Mul

tifac

toria

l int

erve

ntio

n’:

Ind

ivid

ual m

edic

atio

n re

view

(dra

w c

hart

)

►D

aily

sel

f-m

onito

ring

of B

P ×

3 m

onth

s

►20

min

DV

D

►Q

2 w

eek

mot

ivat

iona

l int

ervi

ewin

g fo

llow

-up

via

pho

ne ×

12

wee

ks t

o su

pp

ort

BP

m

anag

emen

t an

d o

ptim

ise

med

icat

ion

SM

Dur

atio

n: 1

2 w

eeks

Com

par

ator

: sta

ndar

d c

are

Phy

siol

ogic

al m

easu

res:

BP

—no

diff

eren

ce b

etw

een

grou

ps

Beh

avio

urs:

Med

icat

ion

adhe

renc

e—no

d

iffer

ence

bet

wee

n gr

oup

s

Tab

le 4

C

ontin

ued

Con

tinue

d

on January 13, 2020 by guest. Protected by copyright.

http://bmjopen.bm

j.com/

BM

J Open: first published as 10.1136/bm

jopen-2017-019814 on 22 March 2018. D

ownloaded from

Page 9: Open Access Research Self-management interventions for ... · kidney disease (CKD). setting Community-based. Participants Adults with CKD stages 1–5 (not requiring kidney replacement

9Donald M, et al. BMJ Open 2018;8:e019814. doi:10.1136/bmjopen-2017-019814

Open Access

Stu

dy

and

ye

ar(R

efer

ence

)D

esig

nTa

rget

po

pul

atio

nS

tud

y si

zeA

ge

(yea

rs)

Inte

rven

tio

n to

pic

(s)

Pro

vid

er(s

)D

eliv

ery

form

atD

escr

ipti

on

of

inte

rven

tio

nS

tud

y o

utco

mes

Stu

dy

resu

lts

Will

iam

s et

al

(201

2)43

RC

TC

KD

2–4

+D

M+

card

iova

scul

ar d

isea

se78 (E

=40

,C

=38

)A

ge: 7

4.31

Med

icat

ion

Com

orb

iditi

es

►O

ther

(ie,

sel

f-ef

ficac

y)

Nur

se, i

nter

pre

ter

Prin

t

►Fa

ce t

o fa

ce

►Te

lep

hone

Pow

erP

oint

slid

es

‘Sel

f-ef

ficac

y M

edic

atio

n In

terv

entio

n (S

EM

)’:

►In

div

idua

l med

icat

ion

revi

ew—

char

t in

Eng

lish

but

inte

rpre

ter

wro

te o

n m

edic

atio

n b

oxes

in

pat

ient

s la

ngua

ge o

r us

ed s

ymb

ols

Ind

ivid

ual s

lide

pre

sent

atio

n (2

0 m

in) v

ia

inte

rpre

ter

(Gre

ek, I

talia

n, V

ietn

ames

e)

►Q

2 w

eek

mot

ivat

iona

l int

ervi

ewin

g fo

llow

-up

vi

a p

hone

× 1

2 w

eeks

Dur

atio

n: 1

2 w

eeks

Com

par

ator

: sta

ndar

d c

are

Inte

rven

tion

spec

ific:

Att

ritio

n ra

te t

o as

sess

fe

asib

ility

of s

tud

y—hi

gh

attr

ition

Cog

nitio

ns:

Med

icat

ion

self-

effic

acy—

no

diff

eren

ce b

etw

een

grou

ps

Hea

lthca

re:

Hea

lth c

are

utili

zatio

n—no

d

iffer

ence

bet

wee

n gr

oup

s

Phy

siol

ogic

al m

easu

res:

Rou

tine

clin

ical

lab

sur

roga

te

mea

sure

s—no

diff

eren

ce

Beh

avio

urs:

Med

icat

ion

adhe

renc

e—no

d

iffer

ence

Ind

ivid

ual o

utco

mes

:

►G

ener

al w

ell-

bei

ng—

no

diff

eren

ce

de

Brit

o-A

shur

st e

t al

(2

013)

44

RC

TC

KD

3–5

+H

TN

(BP

>13

0/80

)+

Ben

gali

pop

ulat

ion

56 (E=

28,

C=

28)

Age

: 55.

7–60

.7

Die

t/nu

triti

onD

ietic

ian

and

B

enga

li w

orke

r

►Fa

ce t

o fa

ce

►Te

lep

hone

‘Die

t ad

vice

’:

►P

ract

ical

coo

king

and

ed

ucat

ion

sess

ions

in

the

com

mun

ity fa

cilit

ated

by

a B

enga

li w

orke

r

►Fo

llow

ed b

y Q

2 w

eek

pho

ne c

alls

to

rein

forc

e ad

vice

and

set

new

tar

gets

Dur

atio

n: 6

mon

ths

Com

par

ator

: sta

ndar

d c

are

Phy

siol

ogic

al m

easu

res:

BP

—d

ecre

ased

by

8 m

m H

g in

E g

roup

24 h

ours

urin

ary

salt

excr

etio

n—d

ecre

ase

in E

gr

oup

eGFR

—no

diff

eren

ce b

etw

een

grou

ps

Pae

s-B

arre

to

et a

l (20

13)45

RC

TC

KD

3–5

89 (E=

43,

C=

46)

Age

: 63.

4

Die

t/nu

triti

onD

ietic

ian

Prin

t

►Fa

ce t

o fa

ce

►Te

lep

hone

‘Nut

ritio

n ed

ucat

ion

pro

gram

me’

:

►S

tand

ard

die

tary

cou

nsel

ling

AN

D

►E

duc

atio

n fo

lder

with

rec

ipes

to

rep

lace

sal

t w

ith s

odiu

m fr

ee s

easo

ning

ble

nds

Ind

ivid

ual 1

5–20

min

cla

ss

►H

and

s on

ses

sion

ab

out

pro

tein

ric

h fo

od

►H

and

s on

ses

sion

usi

ng t

est

tub

es w

ith t

he

amou

nt o

f sal

t in

diff

eren

t fo

ods

4 m

onth

ly fo

llow

-up

vis

its

►Te

lep

hone

cal

l to

add

ress

any

dou

bts

with

d

ieta

ry p

lan

Dur

atio

n: 4

–7 m

onth

sC

omp

arat

or: s

tand

ard

car

e

Beh

avio

urs:

Red

uctio

n in

pro

tein

inta

ke—

dec

reas

ed

►A

dhe

renc

e to

low

pro

tein

d

iet—

effe

ctiv

e

Phy

siol

ogic

al m

easu

res:

Bod

y co

mp

ositi

on: w

aist

ci

rcum

fere

nce,

bod

y fa

t,

BM

I, m

id-a

rm m

uscl

e ci

rcum

fere

nce—

no c

hang

e

► S

erum

alb

umin

—no

cha

nge

Bla

kem

an e

t al

(2

014)

46

RC

TC

KD

343

6(E

=21

5,C

=22

1)A

ge: 7

2.1

Gen

eral

CK

D k

now

led

ge

►C

omor

bid

ities

Oth

er (i

e, c

omm

unity

re

sour

ces

Lay

heal

th w

orke

r

►P

rint

Web

site

Tele

pho

ne

‘Info

rmat

ion

and

tel

epho

ne-g

uid

ed a

cces

s to

co

mm

unity

ser

vice

s’:

Kid

ney

Info

rmat

ion

Gui

deb

ook

Pat

ient

-Led

Ass

essm

ent

for

Net

wor

k S

upp

ort

‘PLA

NS

’ boo

klet

and

inte

ract

ive

web

site

—ta

ilore

d a

cces

s to

com

mun

ity r

esou

rces

Tele

pho

ne g

uid

ed h

elp

from

a la

y he

alth

w

orke

rD

urat

ion:

6 m

onth

sC

omp

arat

or: s

tand

ard

car

e

Cog

nitio

ns:

Pos

itive

and

act

ive

enga

gem

ent

in li

fe (h

eiQ

)—no

d

iffer

ence

bet

wee

n gr

oup

s

Phy

siol

ogic

al m

easu

res:

BP

con

trol

—b

ette

r B

P

mai

nten

ance

in E

gro

up

Ind

ivid

ual o

utco

mes

:

►H

ealth

rel

ated

QO

L (E

uroQ

oL

EQ

-5D

ind

ex)—

high

er in

E

grou

p

Tab

le 4

C

ontin

ued

Con

tinue

d

on January 13, 2020 by guest. Protected by copyright.

http://bmjopen.bm

j.com/

BM

J Open: first published as 10.1136/bm

jopen-2017-019814 on 22 March 2018. D

ownloaded from

Page 10: Open Access Research Self-management interventions for ... · kidney disease (CKD). setting Community-based. Participants Adults with CKD stages 1–5 (not requiring kidney replacement

10 Donald M, et al. BMJ Open 2018;8:e019814. doi:10.1136/bmjopen-2017-019814

Open Access

Stu

dy

and

ye

ar(R

efer

ence

)D

esig

nTa

rget

po

pul

atio

nS

tud

y si

zeA

ge

(yea

rs)

Inte

rven

tio

n to

pic

(s)

Pro

vid

er(s

)D

eliv

ery

form

atD

escr

ipti

on

of

inte

rven

tio

nS

tud

y o

utco

mes

Stu

dy

resu

lts

McM

anus

et

al

(201

4)47

RC

TH

TN (B

P>

130/

80)

+C

KD

3 or

DM

or

CH

D55

5(E

=27

7,C

=27

8)A

ge: 6

9.3–

69.6

Med

icat

ion

Com

orb

iditi

esG

ener

al

pra

ctiti

oner

, p

atie

nt

Prin

t

►Fa

ce t

o fa

ce‘S

elf-

mon

itorin

g of

BP

and

sel

f-tit

ratio

n of

m

edic

atio

ns’:

Sel

f-m

onito

ring

of B

P

►S

elf-

titra

tion

of m

edic

atio

ns fo

llow

ing

a 3-

step

p

lan

des

igne

d b

y ge

nera

l pra

ctiti

oner

and

p

atie

ntD

urat

ion:

12

mon

ths

Com

par

ator

: sta

ndar

d c

are

Phy

siol

ogic

al m

easu

res:

SB

P a

t 12

mon

ths—

no

diff

eren

ce

Hea

lthca

re:

Pre

scrip

tion

of

antih

yper

tens

ive

med

icat

ions

in

crea

sed

in b

oth

grou

ps

but

gr

eate

r si

gnifi

canc

e in

E g

roup

Sym

pto

m m

gmt.

:

►A

dve

rse

effe

cts—

no

sign

ifica

nt d

iffer

ence

bet

wee

n gr

oup

s

Ind

ivid

ual o

utco

mes

:

►Q

OL—

no s

igni

fican

t d

iffer

ence

b

etw

een

grou

ps

Par

k et

al

(201

4)48

RC

TC

KD

3+H

TN+

Afr

ican

-Am

eric

an15 A

ge: 5

8.7

Oth

er (i

e, m

edita

tion)

Prin

cip

le

inve

stig

ator

, p

atie

nt

Face

to

face

Aud

io r

ecor

din

g‘M

ind

fuln

ess

med

itatio

n (M

M)’

14 m

in o

f pre

reco

rded

gui

ded

MM

usi

ng M

P3

pla

yer

and

hea

dp

hone

sD

urat

ion:

one

ses

sion

Com

par

ator

: BP

ed

ucat

ion

Phy

siol

ogic

al m

easu

res:

BP

—d

ecre

ase

in S

BP

/D

BP

/ HR

/ M

AP

Mus

cle

sym

pat

hetic

ner

ve

activ

ity—

dec

reas

ed

How

den

et

al

(201

5)49

RC

TC

KD

3–4

and

>

1 un

cont

rolle

dca

rdio

vasc

ular

ris

k fa

ctor

72 (E=

36,

C=

36)

Age

60.

2–62

.0

Phy

sica

l act

ivity

Nur

se p

ract

ition

er,

soci

al w

orke

r, ex

erci

se

phy

siol

ogis

t,

die

ticia

n,

psy

chol

ogis

t,

dia

bet

es e

duc

ator

Prin

t

►Fa

ce t

o fa

ce‘E

xerc

ise

trai

ning

and

life

styl

e in

terv

entio

n’:

Sta

ndar

d c

are

AN

D

►D

etai

led

med

ical

/sur

gica

l his

tory

tak

en b

y nu

rse

pra

ctiti

oner

Ed

ucat

ion

abou

t ex

erci

sing

saf

ely:

m

aint

aini

ng h

ydra

tion,

sig

ns/s

ymp

tom

s of

ab

norm

al r

esp

onse

to

exer

cise

If d

iab

etic

—ed

ucat

ion

on h

ypog

lyca

emia

Exe

rcis

e p

resc

riptio

n in

div

idua

lised

on

pat

ient

’s c

omor

bid

con

diti

ons

Goa

l=15

0 m

in/w

eek

of m

oder

ate

inte

nsity

ex

erci

se p

lus

resi

stan

ce t

rain

ing

8 w

eeks

sup

ervi

sed

, the

n 10

mon

th h

ome

bas

ed

►P

atie

nts

got:

exe

rcis

e b

all,

resi

stan

ce t

rain

ing

boo

klet

Pat

ient

s co

ntac

ted

reg

ular

ly t

o m

onito

r ad

here

nce

to t

rain

ing

Dur

atio

n: 1

2 m

onth

sC

omp

arat

or: s

tand

ard

car

e

Phy

siol

ogic

al m

easu

res:

ME

TS—

imp

rove

d

►6

min

wal

k d

ista

nce—

imp

rove

d

►B

MI—

imp

rove

d

Leeh

ey e

t al

(2

016)

50

RC

TC

KD

2–

4+D

M2+

BM

I>30

+p

ersi

sten

t p

rote

inur

ia

36 (Exe

rcis

e+d

iet

= 1

8,D

iet=

18)

Age

: 66

Die

t/nu

triti

on

►P

hysi

cal a

ctiv

ityP

erso

nal t

rain

er

►Fa

ce t

o fa

ce

►Te

lep

hone

‘Str

uctu

red

exe

rcis

e p

rogr

amm

e’:

Die

tary

cou

nsel

ling=

bas

elin

e nu

triti

onal

co

unse

lling

with

nin

e fo

llow

-up

pho

ne c

alls

(b

oth

grou

ps)

AN

D

►S

uper

vise

d e

xerc

ise

pro

gram

me

3× w

eek

(60

min

car

dio

plu

s 25

–30

min

res

ista

nce

trai

ning

)

►Fo

llow

ed b

y ho

me

exer

cise

pha

se: 3

×/w

eek

×

60 m

in w

ith w

eekl

y fo

llow

-up

pho

ne c

alls

and

p

atie

nt e

ncou

rage

d t

o m

eet

trai

ner

Q1

mon

thD

urat

ion:

12

mon

ths

Com

par

ator

: die

t co

unse

lling

onl

y

Phy

siol

ogic

al m

easu

res:

Urin

e p

rote

in t

o cr

eatin

ine

ratio

—no

cha

nge

at 5

2 w

eeks

Sym

pto

m li

mite

d a

nd

cons

tant

wor

k ra

te t

read

mill

tim

e—si

gnifi

cant

incr

ease

in

die

t+ex

erci

se g

roup

at

12 b

ut

not

52 w

eeks

Urin

e al

bum

in t

o cr

eatin

ine

ratio

—no

cha

nge

eGFR

—no

cha

nge

Infla

mm

atio

n—no

cha

nge

End

othe

lial f

unct

ion—

no

chan

ge

►B

ody

com

pos

ition

—no

cha

nge

Tab

le 4

C

ontin

ued

Con

tinue

d

on January 13, 2020 by guest. Protected by copyright.

http://bmjopen.bm

j.com/

BM

J Open: first published as 10.1136/bm

jopen-2017-019814 on 22 March 2018. D

ownloaded from

Page 11: Open Access Research Self-management interventions for ... · kidney disease (CKD). setting Community-based. Participants Adults with CKD stages 1–5 (not requiring kidney replacement

11Donald M, et al. BMJ Open 2018;8:e019814. doi:10.1136/bmjopen-2017-019814

Open Access

Stu

dy

and

ye

ar(R

efer

ence

)D

esig

nTa

rget

po

pul

atio

nS

tud

y si

zeA

ge

(yea

rs)

Inte

rven

tio

n to

pic

(s)

Pro

vid

er(s

)D

eliv

ery

form

atD

escr

ipti

on

of

inte

rven

tio

nS

tud

y o

utco

mes

Stu

dy

resu

lts

Mon

toya

et

al

(201

6)30

RC

TC

KD

430 (E

=16

,C

=14

)A

ge: 6

7.9–

68.3

Gen

eral

CK

D k

now

led

ge

►D

iet/

nutr

ition

Med

icat

ion

Mod

aliti

es

►O

ther

(ie,

put

ting

affa

irs in

or

der

)

Nep

hrol

ogis

t,

nurs

e p

ract

ition

er,

die

ticia

n, s

ocia

l w

orke

r

Prin

t

►Fa

ce t

o fa

ce

►P

ower

Poi

nt s

lides

‘Nur

se p

ract

ition

er fa

cilit

ated

CK

D g

roup

vis

it’:

Bin

der

with

sec

tion

on in

div

idua

l lab

s, a

noth

er

sect

ion

for

top

ics

of g

roup

s vi

sits

Six

1.5

–2-h

our

long

mon

thly

gro

up v

isits

of 8

p

atie

nts

(~1/

2 ha

d fa

mily

mem

ber

s w

ith t

hem

)

►Th

ree

visi

ts d

one

in c

onju

nctio

n w

ith

nep

hrol

ogis

t’s e

xam

inat

ions

(firs

t ha

lf=ap

t,

seco

nd h

alf=

educ

atio

n)

►th

ree

visi

ts=

educ

atio

n on

ly

►In

tera

ctiv

e d

iscu

ssio

n at

eac

h vi

sit

Slid

e p

rese

ntat

ion

(30–

45 m

in)

Dur

atio

n: 9

mon

ths

Com

par

ator

: sta

ndar

d c

are

Cog

nitio

ns:

CK

D k

now

led

ge—

imp

rove

d in

b

oth

grou

ps

Sel

f-ef

ficac

y/d

isea

se S

M—

upw

ard

tre

nd in

E g

roup

Ind

ivid

ual o

utco

mes

:

►S

atis

fact

ion—

high

Non

-RC

T

Rob

inso

n et

al

(198

8)51

Ob

sC

KD

25 Age

: NR

Gen

eral

CK

D k

now

led

ge

►D

iet/

nutr

ition

Med

icat

ion

Oth

er (i

e, s

elf-

care

act

iviti

es

►M

odal

ities

NR

Face

to

face

‘Ren

al B

ingo

’:

►B

ingo

gam

e fo

rmat

/gro

up g

amin

g te

chni

que

Pro

visi

on o

f ref

resh

men

ts &

priz

es fo

r m

otiv

atio

n

►R

efre

shm

ents

mad

e w

ith d

ietic

ian

cons

ulta

tion,

rei

nfor

ced

die

tary

reg

imen

Dur

atio

n: o

ne s

essi

onC

omp

arat

or: n

one

Cog

nitio

ns:

Info

rmat

ion

was

gai

ned

or

rein

forc

ed—

des

irab

le o

utco

me

Met

a v

arie

ty o

f lea

rnin

g ne

eds—

des

irab

le o

utco

me

Inte

rven

tion

spec

ific:

Par

ticip

atio

n w

as e

njoy

ed—

des

irab

le o

utco

me

Inte

rest

exp

ress

ed fo

r re

pea

ting

the

exer

cise

—d

esira

ble

out

com

e

Kla

ng e

t al

(1

998)

52

QE

CK

D 4

–556 (E

=28

,C

=28

)A

ge: 5

4–58

Gen

eral

CK

D k

now

led

ge

►D

iet/

nutr

ition

Phy

sica

l act

ivity

Mod

aliti

es

►O

ther

(ie,

psy

chos

ocia

l—im

pac

t of

CK

D o

n ec

onom

y,

fam

ily a

nd s

ocia

l life

)

Nur

se, p

hysi

cian

, so

cial

wor

ker,

die

ticia

n,

phy

siot

hera

pis

t

Face

to

face

‘Pre

-dia

lysi

s p

atie

nt e

duc

atio

n’:

Four

2-h

our

sess

ions

of g

roup

tea

chin

g w

ith a

cl

assr

oom

ap

pro

ach

Ind

ivid

ual s

upp

ort

follo

w-u

p b

y ne

phr

olog

y te

am m

emb

erD

urat

ion:

four

ses

sion

sC

omp

arat

or: s

tand

ard

car

e

Ind

ivid

ual o

utco

mes

:

►Fu

nctio

nal a

nd e

mot

iona

l wel

l-b

eing

—b

ette

r in

E g

roup

*

Cup

isiti

et

al

(200

2)53

PP

CK

D 3

b-5

20 Age

: NR

Die

t/nu

triti

onN

R

►P

rint

‘Veg

etar

ian

die

t’:

Alte

rnat

e b

etw

een

anim

al b

ased

con

vent

iona

l lo

w p

rote

in d

iet

and

a v

eget

able

-bas

ed lo

w-

pro

tein

die

t

►B

ookl

ets

exp

lain

ing

gene

ral g

uid

elin

es a

nd

feat

ures

of t

he d

iet

Dur

atio

n: o

ne s

essi

onC

omp

arat

or: c

onve

ntio

nal p

rote

in d

iet

Ind

ivid

ual o

utco

mes

:

►O

pin

ions

on

die

t—90

%

enjo

yed

Phy

siol

ogic

al m

easu

res:

Cre

atin

ine—

no c

hang

e

►A

lbum

in—

no c

hang

e

►To

tal p

rote

in—

no c

hang

e

► L

ipid

s—d

ecre

ased

► E

lect

roly

tes—

no c

hang

e

►H

aem

atoc

rit—

no c

hang

e

► U

rinar

y p

rote

in e

xcre

tion—

d

ecre

ased

►U

rinar

y ur

ea e

xcre

tion—

dec

reas

ed

Bod

y w

eigh

t—no

cha

nge

Tab

le 4

C

ontin

ued

Con

tinue

d

on January 13, 2020 by guest. Protected by copyright.

http://bmjopen.bm

j.com/

BM

J Open: first published as 10.1136/bm

jopen-2017-019814 on 22 March 2018. D

ownloaded from

Page 12: Open Access Research Self-management interventions for ... · kidney disease (CKD). setting Community-based. Participants Adults with CKD stages 1–5 (not requiring kidney replacement

12 Donald M, et al. BMJ Open 2018;8:e019814. doi:10.1136/bmjopen-2017-019814

Open Access

Stu

dy

and

ye

ar(R

efer

ence

)D

esig

nTa

rget

po

pul

atio

nS

tud

y si

zeA

ge

(yea

rs)

Inte

rven

tio

n to

pic

(s)

Pro

vid

er(s

)D

eliv

ery

form

atD

escr

ipti

on

of

inte

rven

tio

nS

tud

y o

utco

mes

Stu

dy

resu

lts

Gut

iérr

ez

Vila

pla

na e

t al

(2

007)

57

PP

CK

D24 A

ge: 6

4.5

Gen

eral

CK

D k

now

led

ge

►D

iet/

nutr

ition

Mod

aliti

es

►O

ther

Nur

se, p

atie

nt

volu

ntee

rs

►P

rint

Face

to

face

Pow

erP

oint

slid

es

‘Ed

ucat

ion

Inte

rven

tion’

Eig

ht 2

-hou

r cl

asse

s

►D

idac

tic a

nd d

iscu

ssio

nD

urat

ion:

6 m

onth

sC

omp

arat

or: n

one

Cog

nitio

ns:

Imp

rove

men

t in

kno

wle

dge

of

CK

D

Beh

avio

urs:

Mod

ified

life

styl

e, d

iet

Inte

rven

tion

spec

ific:

Red

uctio

n of

str

ess,

fear

►Im

pro

vem

ent

in t

hera

peu

tic

rela

tions

hip

s w

ith h

ealth

care

p

rovi

der

s, c

omp

anio

ns a

nd

mul

ti- d

isci

plin

ary

team

.

Pag

els

et a

l (2

008)

55

Ob

sC

KD

58 Age

: 65

Gen

eral

CK

D k

now

led

geN

urse

Prin

t

►A

dia

ry t

o p

rom

ote

dis

ease

rel

ated

kn

owle

dge

, inv

olve

men

t an

d s

elf-

care

ab

ility

an

d t

o p

rom

ote

coop

erat

ion

bet

wee

n p

atie

nt

and

nur

seD

urat

ion:

12

mon

ths

Com

par

ator

: non

e

Cog

nitio

ns:

Par

ticip

atio

n, s

elf-

care

and

d

isea

se r

elat

ed k

now

led

ge

Inte

rven

tion

spec

ific:

Use

of d

iary

Sui

tab

ility

for

teac

hing

p

urp

oses

Yen

et a

l (2

008)

56P

PC

KD

366 A

ge: 6

7.4

Gen

eral

CK

D k

now

led

ge

►D

iet/

nutr

ition

Phy

sica

l act

ivity

Med

icat

ion

Nep

hrol

ogis

t,

nurs

e, d

ietic

ian,

so

cial

wor

ker

Prin

t

►Fa

ce t

o fa

ce

►Te

lep

hone

‘Ed

ucat

iona

l int

erve

ntio

n’:

Han

dou

ts

►O

ne 1

50 m

in w

orks

hop

Ind

ivid

ual c

onsu

lts Q

6 m

onth

with

nur

se

►P

hone

num

ber

pro

vid

ed t

o p

artic

ipan

ts fo

r q

uest

ions

Des

sert

s re

com

men

ded

by

die

ticia

n gi

ven

at

wor

ksho

p fo

r ed

ucat

iona

l pur

pos

es, l

unch

b

oxes

des

igne

d b

y d

ietic

ian

give

n ou

t at

the

en

d o

f the

wor

ksho

pD

urat

ion:

12

mon

ths

Com

par

ator

: non

e

Cog

nitio

ns:

QO

L (W

HO

QO

L-B

RE

F Ta

iwan

ve

rsio

n)—

glob

al in

crea

se

►K

now

led

ge o

f ren

al fu

nctio

n p

rote

ctio

n (c

heck

list

mad

e b

y in

vest

igat

ors)

—no

cha

nge

Phy

siol

ogic

al m

easu

res:

Cre

atin

ine—

no c

hang

e

► B

UN

—no

cha

nge

GFR

—no

cha

nge

Bod

y w

eigh

t—no

cha

nge

Mus

cle

wei

ght—

no c

hang

e

►%

Bod

y fa

t—no

cha

nge

Wai

st-t

o-hi

p r

atio

— s

igni

fican

t d

ecre

ase

in E

gro

up

BM

I—si

gnifi

cant

dec

reas

e in

E

gro

up

BP

—no

cha

nge

Gut

iérr

ez-

Vila

pla

na e

t al

(2

009)

54

PP

CK

D 4

–541 A

ge: 6

0.56

Gen

eral

CK

D k

now

led

ge

►D

iet/

nutr

ition

Phy

sica

l act

ivity

Mod

aliti

es

►O

ther

(ie,

psy

chos

ocia

l—im

pac

t of

CK

D fa

mily

, fin

ance

s, s

ocia

l life

)

Nur

se, p

hysi

cian

, te

chni

cian

, thr

ee

exp

ert

pat

ient

s

Prin

t

►Fa

ce t

o fa

ce‘T

each

ing

grou

p’:

Six

2-h

our

mon

thly

gro

up e

duc

atio

n se

ssio

ns

►B

ookl

et fo

r fu

ture

ref

eren

ceD

urat

ion:

6 m

onth

sC

omp

arat

or: n

one

Cog

nitio

ns:

Anx

iety

—d

ecre

ased

Fear

—m

ore

cont

rol o

f fea

r re

spon

se

►S

tres

s—d

ecre

ased

Wu

et a

l (2

009)

58

QE

CK

D 3

–557

3(E

=28

7,C

ohor

t=28

6)A

ge: 6

3.4

Gen

eral

CK

D k

now

led

ge

►D

iet/

nutr

ition

Med

icat

ion

Life

styl

e

Nur

se, s

ocia

l w

orke

r, d

ietic

ian,

H

D/P

D p

atie

nt

volu

ntee

rs,

phy

sici

ans

Face

to

face

‘Mul

tidis

cip

linar

y p

red

ialy

sis

educ

atio

n (M

PE

)’:

►In

div

idua

l lec

ture

s, c

onte

nt-b

ased

on

CK

D

stag

e

►D

ieta

ry c

ouns

ellin

g b

iann

ually

Dur

atio

n: 1

2 m

onth

sC

omp

arat

or: s

tand

ard

car

e

Hea

lth s

tatu

s:

►E

SR

D w

arra

ntin

g R

RT—

13.9

%

in E

gro

up v

s 43

% in

C g

roup

All

caus

e m

orta

lity—

1.7%

in E

gr

oup

vs

10.1

% in

C g

roup

Hea

lthca

re:

Hos

pita

lisat

ion—

2.8%

E g

roup

ve

rsus

16.

4% in

C g

roup

Tab

le 4

C

ontin

ued

Con

tinue

d

on January 13, 2020 by guest. Protected by copyright.

http://bmjopen.bm

j.com/

BM

J Open: first published as 10.1136/bm

jopen-2017-019814 on 22 March 2018. D

ownloaded from

Page 13: Open Access Research Self-management interventions for ... · kidney disease (CKD). setting Community-based. Participants Adults with CKD stages 1–5 (not requiring kidney replacement

13Donald M, et al. BMJ Open 2018;8:e019814. doi:10.1136/bmjopen-2017-019814

Open Access

Stu

dy

and

ye

ar(R

efer

ence

)D

esig

nTa

rget

po

pul

atio

nS

tud

y si

zeA

ge

(yea

rs)

Inte

rven

tio

n to

pic

(s)

Pro

vid

er(s

)D

eliv

ery

form

atD

escr

ipti

on

of

inte

rven

tio

nS

tud

y o

utco

mes

Stu

dy

resu

lts

Wie

rdsm

a et

al

(201

1)59

QE

CK

D54 (E

=28

,C

=26

)A

ge: 5

5–59

Med

icat

ion

Nur

se p

ract

ition

er

►Fa

ce t

o fa

ce

►P

rint

‘Mot

ivat

iona

l int

ervi

ewin

g’:

Cou

nsel

ling

by

nurs

e p

ract

ition

er (i

n ad

diti

on

to c

are

by

nep

hrol

ogis

t) us

ing

mot

ivat

iona

l in

terv

iew

ing

Usi

ng t

he ‘L

ong-

Term

Med

icat

ion

Beh

avio

ur

Sel

f-E

ffica

cy S

cale

(LTM

BS

ES

)’—ar

eas

with

sc

ore<

5 w

ere

iden

tified

and

the

n up

to

five

area

s (p

icke

d b

y p

atie

nt) w

ere

dis

cuss

ed a

nd

solu

tions

and

goa

ls w

ere

set

Dur

atio

n: 6

mon

ths

Com

par

ator

: sta

ndar

d c

are

Cog

nitio

ns:

LTM

BS

ES

—d

iffer

ence

in m

ean

self-

effic

acy

scor

e at

pos

t-te

st

Agu

ilera

Flo

rez

et a

l (20

12)60

Ob

sC

KD

19 Age

: 58

Gen

eral

CK

D k

now

led

ge

►D

iet/

nutr

ition

Med

icat

ion

Sym

pto

m m

anag

emen

t

►P

hysi

cal a

ctiv

ity

►M

odal

ities

Oth

er

Nur

se,

phy

siot

hera

pis

t,

die

ticia

n,

pha

rmac

ist,

p

sych

olog

ist,

co

ord

inat

ors,

ne

phr

olog

ist,

p

atie

nt m

ento

rs

Face

to

face

‘Esc

uela

ER

CA’

:

►7

1.5

hour

mul

tidis

cip

linar

y gr

oup

ed

ucat

ion

sess

ions

hel

d b

iwee

kly

Up

to

10 p

atie

nts

per

gro

up w

ith fa

mily

m

emb

ers

Did

actic

plu

s d

iscu

ssio

n fo

rmat

Dur

atio

n: n

ot r

epor

ted

Com

par

ator

: non

e

Cog

nitio

ns:

Kno

wle

dge

Anx

iety

—in

crea

sed

Ind

ivid

ual o

utco

mes

:

►S

atis

fact

ion

in g

roup

the

rap

y

Cho

i et

al

(201

2)61

QE

CK

D 1

–561 (E

=31

,C

=30

)A

ge: 5

3.93

–58.

33

Gen

eral

CK

D k

now

led

ge

►D

iet/

nutr

ition

Mod

aliti

es

►O

ther

(ie,

und

erst

and

ing

and

co

mp

lianc

e w

ith S

M)

Phy

sici

an, n

urse

, d

ietic

ian

Face

to

face

Pow

erP

oint

slid

es‘F

ace-

to-f

ace

SM

pro

gram

me’

:

►90

min

lect

ure

with

slid

es (3

–5 p

eop

le/g

roup

)

►20

min

ind

ivid

ual c

onsu

lt

►1

wee

k la

ter

ind

ivid

ual r

einf

orce

men

t ed

ucat

ion

and

con

sulta

tion

Dur

atio

n: t

wo

sess

ions

Com

par

ator

: gen

eral

mai

nten

ance

Cog

nitio

ns:

Kno

wle

dge

of C

KD

sca

le—

incr

ease

>in

E g

roup

Beh

avio

urs:

Sel

f-ca

re p

ract

ice

scal

e fo

r p

atie

nts

with

CK

D—

no

diff

eren

ce b

etw

een

E g

roup

an

d C

gro

up b

ut d

id in

crea

se

over

tim

e fo

r b

oth

grou

ps

Phy

siol

ogic

al m

easu

res:

BU

N/C

reat

inin

e—no

cha

nge

Na/

K—

no c

hang

e

► C

a/P

O4—

no c

hang

e

► H

aem

oglo

bin

—no

cha

nge

GFR

—no

cha

nge

Kao

et

al

(201

2)27

QE

CK

D 1

–494 (E

=45

,C

=49

)A

ge: 7

3.17

Gen

eral

CK

D k

now

led

ge

►P

hysi

cal a

ctiv

ityIn

stru

ctor

Prin

t

►Fa

ce t

o fa

ce

►Te

lep

hone

‘Exe

rcis

e ed

ucat

ion

inte

rven

tion’

:

►M

anua

l

►1.

5-ho

ur e

xerc

ise/

heal

th e

duc

atio

n co

urse

Dra

fted

exe

rcis

e co

ntra

ct a

nd e

xerc

ise

pro

gram

mes

Follo

w-u

p p

hone

cal

ls

►1x

/mon

th fo

r p

atie

nts

in m

aint

enan

ce p

hase

2×/m

onth

for

pat

ient

s in

act

ion/

pre

p s

tage

s

►4×

/mon

th fo

r p

atie

nts

at p

reco

ntem

pla

tion/

cont

emp

latio

n st

ages

Goa

l: w

orko

ut 3

–5×

/wee

k ×

30

min

for

3 m

onth

sD

urat

ion:

4 m

onth

sC

omp

arat

or: s

tand

ard

car

e

Beh

avio

urs:

Exe

rcis

e b

ehav

iour

—im

pro

ved

in

E g

roup

Cog

nitio

ns:

Dep

ress

ion—

scor

e d

ecre

ased

(ie

, im

pro

ved

) in

E g

roup

Sym

pto

m m

anag

emen

t:

►Fa

tigue

—sc

ore

dec

reas

ed in

E

gro

up

Tab

le 4

C

ontin

ued

Con

tinue

d

on January 13, 2020 by guest. Protected by copyright.

http://bmjopen.bm

j.com/

BM

J Open: first published as 10.1136/bm

jopen-2017-019814 on 22 March 2018. D

ownloaded from

Page 14: Open Access Research Self-management interventions for ... · kidney disease (CKD). setting Community-based. Participants Adults with CKD stages 1–5 (not requiring kidney replacement

14 Donald M, et al. BMJ Open 2018;8:e019814. doi:10.1136/bmjopen-2017-019814

Open Access

Stu

dy

and

ye

ar(R

efer

ence

)D

esig

nTa

rget

po

pul

atio

nS

tud

y si

zeA

ge

(yea

rs)

Inte

rven

tio

n to

pic

(s)

Pro

vid

er(s

)D

eliv

ery

form

atD

escr

ipti

on

of

inte

rven

tio

nS

tud

y o

utco

mes

Stu

dy

resu

lts

Dia

man

tidis

et

al (

2013

)62P

PC

KD

3–5

108

Age

: 64

Die

t/nu

triti

on

►M

edic

atio

nO

nlin

e to

ol

►W

ebsi

te‘D

isea

se-s

pec

ific

safe

ty in

form

atio

n’:

Saf

e ki

dne

y ca

re w

ebsi

te—

pat

ient

/fam

ily

mem

ber

and

pro

vid

er p

orta

ls

►E

duc

atio

n m

odul

es d

isp

laye

d in

circ

ular

d

istr

ibut

ion

to a

void

prio

ritis

atio

n of

top

ics

Dur

atio

n: n

ot a

pp

licab

leC

omp

arat

or: n

one

Inte

rven

tion

spec

ific:

Firs

t en

try

into

web

site

-<

30%

of p

artic

ipan

ts e

nter

ed

with

in 3

65 d

ays

(tota

l fol

low

-up

p

erio

d)

Ave

rage

dw

ell t

ime

on t

he

web

site

—7

min

Mod

ules

wer

e ra

nked

by

freq

uenc

y of

sel

ectio

n—Th

e th

ree

mos

t fr

eque

ntly

vis

ited

p

ages

wer

e ‘R

enal

func

tion

calc

ulat

or’,

‘Pill

s to

avo

id’ a

nd

‘Foo

ds

to a

void

Kaz

awa

et

al

(201

3)31

PP

CK

D 3

–4 (d

iab

etic

ne

phr

opat

hy)

30 Age

: 67

Die

t/nu

triti

on

►M

edic

atio

ns

►P

hysi

cal a

ctiv

ity

►C

omor

bid

ities

Oth

er (i

e, s

tres

s m

anag

emen

t, id

entif

y su

pp

orte

rs (f

amily

) & h

ow

they

can

con

trib

ute,

goa

l se

ttin

g)

Nur

se

►P

rint

Face

to

face

Tele

pho

ne

►E

mai

l

‘SM

ski

lls p

rogr

amm

e’:

Text

boo

k

►D

aily

jour

nal

Four

1 h

our

face

-to-

face

ses

sion

s Q

2 w

eeks

at

out

pat

ient

clin

ic o

r in

hom

e

►Tw

o 30

min

pho

ne o

r em

ail s

essi

ons

Q1

mon

th

►Th

en Q

1 m

onth

pho

ne c

alls

Dur

atio

n: 6

mon

ths

Com

par

ator

: non

e

Ind

ivid

ual o

utco

mes

:

►Q

OL—

self-

effic

acy

and

SM

b

ehav

iour

s im

pro

ved

Phy

siol

ogic

al m

easu

res:

Ren

al fu

nctio

n—no

cha

nge

Hae

mog

lob

in A

1c—

dec

reas

ed

pos

tinte

rven

tion

Lin

et

al

(201

3)63

PP

CK

D 1

-3a

37 Age

67.

42

►O

ther

(ie,

sel

f-re

gula

tion/

self

man

agem

ent

top

ics)

Nur

se

►P

rint

Face

to

face

Vid

eo

‘SM

pro

gram

me’

:

►S

elf-

mon

itorin

g w

orkb

ook

5 w

eek

SM

pro

gram

me

Wee

kly

90 m

in fa

ce-

to-f

ace

grou

p s

essi

ons

(6–8

pat

ient

s)

►C

KD

SM

vid

eo a

bou

t se

lf-re

gula

tion

Dur

atio

n: 5

wee

ksC

omp

arat

or: n

one

Cog

nitio

ns:

CK

D s

elf-

effic

acy—

incr

ease

d

Beh

avio

urs:

CK

D S

M—

no

chan

ge

Phy

siol

ogic

al m

easu

res:

Cre

atin

ine—

mar

gina

lly

sign

ifica

nt d

ecre

ase

GFR

—re

mai

ned

sta

ble

Mur

ali

et a

l (2

013)

28P

PC

KD

412 A

ge: 6

8

►D

iet/

nutr

ition

Onl

ine

tool

Web

site

‘Die

tary

ass

essm

ent

and

eva

luat

ion

tool

’:

►S

elf-

adm

inis

tere

d

►O

bta

ins

24 h

ours

food

his

tory

Then

eva

luat

es d

iet

bas

ed o

n K

DO

QI G

L

►Th

en s

hare

gen

eral

tip

s fo

r su

cces

s

►A

rep

ort

is g

ener

ated

for

the

nep

hrol

ogis

t to

gu

ide

dis

cuss

ion

with

pat

ient

sD

urat

ion:

sin

gle

exp

osur

eC

omp

arat

or: n

one

Cog

nitio

ns:

Cha

nge

in p

atie

nts’

sel

f-ef

ficac

y to

ad

here

to

KD

OQ

I G

L af

ter

sing

le e

xpos

ure

to t

he

tool

—th

ree

wor

sene

d, t

hree

im

pro

ved

, six

no

chan

ge

Inte

rven

tion

spec

ific:

Tool

acc

epta

bili

ty –

wel

l ac

cep

ted

►C

ongr

uenc

e of

pat

ient

an

d p

rovi

der

att

itud

es—

inco

ngru

ence

in 4

/10

case

s w

here

pro

vid

er s

tate

s us

ed

rep

ort

but

pat

ient

doe

sn’t

verif

y

Nau

ta e

t al

(2

013)

32P

PC

KD

22 Age

: 55.

2–59

.8

►D

iet/

nutr

ition

Phy

sica

l act

ivity

Life

styl

e

Onl

ine

tool

Prin

t

►W

ebsi

te‘L

ifest

yle

man

agem

ent

tool

’:

►33

-pag

e q

uick

sta

rt g

uid

e p

rovi

ded

Pat

ient

s ha

d a

cces

s to

site

for

4 m

onth

s—p

atie

nt c

hoic

e to

freq

uenc

y of

vis

its t

o w

ebsi

te

►D

urat

ion:

4 m

onth

s

►C

omp

arat

or: n

one

Cog

nitio

ns:

Sel

f-ef

ficac

y—lim

ited

ef

fect

iven

ess

Beh

avio

urs:

SM

—lim

ited

eff

ectiv

enes

s

Tab

le 4

C

ontin

ued

Con

tinue

d

on January 13, 2020 by guest. Protected by copyright.

http://bmjopen.bm

j.com/

BM

J Open: first published as 10.1136/bm

jopen-2017-019814 on 22 March 2018. D

ownloaded from

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15Donald M, et al. BMJ Open 2018;8:e019814. doi:10.1136/bmjopen-2017-019814

Open Access

Stu

dy

and

ye

ar(R

efer

ence

)D

esig

nTa

rget

po

pul

atio

nS

tud

y si

zeA

ge

(yea

rs)

Inte

rven

tio

n to

pic

(s)

Pro

vid

er(s

)D

eliv

ery

form

atD

escr

ipti

on

of

inte

rven

tio

nS

tud

y o

utco

mes

Stu

dy

resu

lts

Thom

as a

nd

Bry

ar (2

013)

33M

MD

iab

etic

nep

hrop

athy

(D

M+

mic

roal

bum

inur

ia)

176

(E=

116,

C=

60)

Age

: NR

Gen

eral

CK

D k

now

led

ge

►C

omor

bid

ities

Life

styl

e

NR

Prin

t

►D

VD

‘SM

pac

kage

’:

►W

ritte

n m

ater

ials

20 m

in D

VD

Sel

f-m

onito

ring

dia

ry

►Fr

idge

mag

net

with

key

mes

sage

s

►B

P m

onito

r if

need

edD

urat

ion:

one

ses

sion

Com

par

ator

: sta

ndar

d c

are

Phy

siol

ogic

al m

easu

res:

BP

—no

sta

tistic

ally

sig

d

iffer

ence

Hae

mog

lob

in A

1c—

no c

hang

e

►B

MI—

no c

hang

e

Wal

ker

et

al

(201

3)64

PP

CK

D w

ith h

igh

risk

of

Pro

gres

sion

+D

M2+

HTN

+

alb

umin

uria

52 Age

: 57.

5

►D

iet/

nutr

ition

Med

icat

ion

Sym

pto

m m

anag

emen

t

►P

hysi

cal a

ctiv

ity

►O

ther

(ie,

com

plia

nce)

Nur

se, n

urse

p

ract

ition

er

►P

rint

Face

to

face

‘Nur

se p

ract

ition

er in

terv

entio

n in

prim

ary

care

se

ttin

g’:

SM

boo

klet

Initi

al a

sses

smen

t of

life

styl

e b

ehav

iour

s, S

M

pra

ctic

e, h

ealth

/med

icat

ion

know

led

ge

►In

div

idua

l ed

ucat

ion

Ind

ivid

ualis

ed p

atie

nt m

anag

emen

t p

lan

give

n at

end

of 1

2 w

eeks

Q2

wee

k 30

min

long

ass

essm

ents

and

rev

iew

×

12

wee

ksD

urat

ion:

12

wee

ksC

omp

arat

or: n

one

Beh

avio

urs:

SM

(Par

tner

s in

Hea

lth (P

IH)

inst

rum

ent)—

had

cha

nge

in

cert

ain

dom

ains

Wrig

ht N

unes

et

al

(201

3)65

QE

CK

D 1

–555

6(E

=15

5,

Coh

ort=

401)

Age

: 57

Gen

eral

CK

D k

now

led

ge

►D

iet/

nutr

ition

Med

icat

ion

Phy

sica

l act

ivity

Life

styl

e

►C

omor

bid

ities

Oth

er (i

e, c

omp

lianc

e)

Nep

hrol

ogy

fello

ws

Prin

t

►Fa

ce t

o fa

ce‘P

hysi

cian

-del

iver

ed e

duc

atio

n to

o’

►1-

pag

e in

terv

entio

n w

orks

heet

del

iver

ed

dur

ing

clin

ic v

isits

—ta

ke 1

–2 m

in t

o ad

min

iste

rD

urat

ion:

one

ses

sion

Com

par

ator

: ‘hi

stor

ical

gro

up’—

who

dev

elop

ed

shee

t

Cog

nitio

ns:

Kid

ney

spec

ific

know

led

ge—

asso

ciat

ed w

ith in

crea

se in

kn

owle

dge

Inte

rven

tion

spec

ific:

Feas

ibili

ty o

f int

erve

ntio

n—p

hysi

cian

s fo

und

it u

sefu

l an

d e

ffici

ent

but

had

con

cern

re

gard

ing

som

e of

the

tal

king

p

oint

s

Wal

ker

et

al

(201

4)24

PP

CK

D w

ith h

igh

risk

of

Pro

gres

sion

+D

M2+

HTN

+

alb

umin

uria

52 Age

: 57.

5

►S

ee W

alke

r et

 al64

Nur

se, n

urse

p

ract

ition

er

►S

ee W

alke

r et

al64

See

Wal

ker

et a

l64P

hysi

olog

ical

mea

sure

s:

►A

lbum

inur

ia—

imp

rove

d

►G

FR—

no c

hang

e

►5

year

ab

solu

te c

ard

iova

scul

ar

risk—

imp

rove

d

►B

P—

imp

rove

d

►To

tal c

hole

ster

ol—

imp

rove

d

►H

aem

oglo

bin

A1c

—im

pro

ved

Cog

nitio

ns:

Kno

wle

dge

of m

edic

atio

ns/

cond

ition

s im

pro

ved

Beh

avio

urs:

Med

icat

ion

adhe

renc

e,

adhe

renc

e to

hea

lthy

lifes

tyle

im

pro

ved

Enw

orom

et

al (

2015

)66Q

EC

KD

1–4

49 (E=

25,

C=

24)

Age

: 73

Gen

eral

CK

D k

now

led

ge

►S

ymp

tom

s m

anag

emen

t

►M

odal

ities

Com

orb

iditi

es

►O

ther

(ie,

ad

vanc

ed c

are

pla

nnin

g)

Nur

se p

ract

ition

er,

phy

sici

an

assi

stan

ts, c

linic

al

nurs

e sp

ecia

list

Face

to

face

‘Kid

ney

Dis

ease

Ed

ucat

ion

(KD

E)’

six

educ

atio

n cl

asse

s on

one

on

one

or g

roup

b

asis

Dur

atio

n: u

ncle

arC

omp

arat

or: n

o K

DE

Phy

siol

ogic

al m

easu

res:

GFR

dec

line—

slow

er in

E

grou

p

►H

aem

oglo

bin

—E

gro

up

mai

ntai

ned

mor

e st

able

leve

l co

mp

ared

with

non

-KD

E g

roup

w

ho lo

st 1

g/L

from

bas

elin

e

Cog

nitio

ns:

Kid

ney

dis

ease

kno

wle

dge

(K

iKS

sur

vey)

—no

cha

nge

Tab

le 4

C

ontin

ued

Con

tinue

d

on January 13, 2020 by guest. Protected by copyright.

http://bmjopen.bm

j.com/

BM

J Open: first published as 10.1136/bm

jopen-2017-019814 on 22 March 2018. D

ownloaded from

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16 Donald M, et al. BMJ Open 2018;8:e019814. doi:10.1136/bmjopen-2017-019814

Open Access

Stu

dy

and

ye

ar(R

efer

ence

)D

esig

nTa

rget

po

pul

atio

nS

tud

y si

zeA

ge

(yea

rs)

Inte

rven

tio

n to

pic

(s)

Pro

vid

er(s

)D

eliv

ery

form

atD

escr

ipti

on

of

inte

rven

tio

nS

tud

y o

utco

mes

Stu

dy

resu

lts

Vann

et

al

(201

5)29

PP

CK

D 3

b-4

9 Age

: mea

n N

R

►G

ener

al C

KD

kno

wle

dge

Die

t/nu

triti

on

►S

ymp

tom

man

agem

ent

Mod

aliti

es

►C

omor

bid

ities

Oth

er (i

e, s

elf-

care

m

anag

emen

t st

rate

gies

and

b

ehav

iour

s)

Nur

se p

ract

ition

er

►P

rint

Web

site

Face

to

face

Whi

te b

oard

‘CK

D E

duc

atio

n P

rogr

amm

e’

►C

KD

ed

ucat

ion

sess

ions

Ass

essm

ent

of r

ead

ines

s to

cha

nge

CK

D t

oolk

it in

div

idua

lised

for

each

par

ticip

ant

Col

lab

orat

ive

goal

set

ting

bet

wee

n nu

rse

pra

ctiti

oner

and

pat

ient

Info

rmat

ion

boo

klet

with

web

site

s lis

ted

Pat

ient

s m

et w

ith n

urse

pra

ctiti

oner

for

60 m

inD

urat

ion:

ove

r si

x vi

sits

Com

par

ator

: non

e

Cog

nitio

ns:

CK

D-r

elat

ed k

now

led

ge—

imp

rove

d

Beh

avio

urs:

Sel

f rep

orte

d b

ehav

iour

ch

ange

—im

pro

ved

Cup

isiti

et

al

(201

6)67

Ob

sC

KD

3b

-582

3(E

=30

5,C

=51

8)A

ge: 6

9–74

Die

t/nu

triti

onD

ietic

ian

Face

to

face

‘Nut

ritio

nal T

reat

men

t’

►R

enal

die

ticia

n as

sess

ed d

ieta

ry h

abits

us

ing

3-d

ay d

ieta

ry r

ecal

l & p

erfo

rmed

an

inte

rven

tion

tailo

red

to

the

need

s/cl

inic

al

feat

ures

of t

he p

atie

nt

►P

rogr

esse

d fr

om ‘n

orm

al’ d

iet

→ lo

w p

rote

in

die

t →

ver

y lo

w p

rote

in d

iet

dep

end

ing

on

need

sD

urat

ion:

at

leas

t 6

mon

ths

Com

par

ator

: sta

ndar

d c

are

Phy

siol

ogic

al m

easu

res:

Pho

spha

turia

—lo

wer

in E

gr

oup

Hea

lthca

re:

Furo

sem

ide

use—

low

er in

E

grou

p

Cal

cium

free

pho

spha

te b

ind

us

e—lo

wer

in E

gro

up

ES

A u

se—

low

er in

E g

roup

Act

ive

vita

min

D p

rep

arat

ion

use—

low

er in

E g

roup

Ind

ivid

ual o

utco

mes

:

►D

ieta

ry s

atis

fact

ion

que

stio

nnai

re—

maj

ority

of E

gr

oup

pat

ient

s w

ere

satis

fied

w

ith t

heir

die

Ong

et

al

(201

6)68

PP

CK

D 4

–545 A

ge: 5

9.4

Med

icat

ions

Sym

pto

m m

anag

emen

t

►C

omor

bid

ities

Oth

er (i

e, t

rack

ing

lab

re

sults

)

Mob

ile a

pp

licat

ion

Sm

art

pho

ne

app

licat

ion

‘Sm

artp

hone

bas

ed S

M s

yste

m’

Ap

plic

atio

n ge

nera

ted

per

sona

lised

pat

ient

m

essa

ges

bas

ed o

n p

reb

uilt

algo

rithm

sD

urat

ion:

6 m

onth

sC

omp

arat

or: n

one

Phy

siol

ogic

al m

easu

res:

BP

—ch

ange

in h

ome

BP

re

adin

gs

Inte

rven

tion

spec

ific:

Med

icat

ions

— 1

27 m

edic

atio

n d

iscr

epan

cies

iden

tified

Pen

aloz

a-R

amos

et

al

(201

6)25

Ob

sH

TN

(BP

>13

0/80

)+C

KD

sta

ge

thre

e or

CVA

/TIA

or

DM

or

MI o

r an

gina

or

CA

BG

NR

Age

: NA

See

McM

anus

 et 

al47

Gen

eral

p

ract

ition

er,

pat

ient

See

McM

anus

et

al47

See

McM

anus

et

al47

Hea

lthca

re:

Cos

t ef

fect

ive—

yes

Not

ap

plic

able

.

Out

com

e im

pro

ved

pos

t in

terv

entio

n.

Out

com

e w

orse

ned

pos

t in

terv

entio

n.

Out

com

e un

chan

ged

pos

t in

terv

entio

n.

Out

com

e ha

d m

ixed

res

ults

(som

e im

pro

ved

and

/or

som

e w

orse

ned

and

/or

som

e d

id n

ot c

hang

e).

BM

I, b

ody

mas

s in

dex

; BP,

blo

od p

ress

ure;

C, c

ontr

ol; C

ALD

, cul

tura

lly a

nd li

ngui

stic

ally

div

erse

; CH

D, c

oron

ary

hear

t d

isea

se; C

HE

ER

S, C

ontr

ollin

g H

yper

tens

ion:

Ed

ucat

ion

and

Em

pow

erm

ent

Ren

al S

tud

y; C

KD

, chr

onic

kid

ney

dis

ease

; CVA

, ce

reb

rova

scul

ar a

ccid

ent;

DB

P, d

iast

olic

blo

od p

ress

ure;

DM

, dia

bet

es m

ellit

us; E

, exp

erim

enta

l; eG

FR, e

stim

ated

glo

mer

ular

filtr

atio

n ra

te; E

SA

, ert

hrop

oies

is s

timul

atin

g ag

ents

; ES

RD

, ear

ly s

tage

ren

al d

isea

se; H

TN, h

yper

tens

ion;

MM

, mix

ed m

etho

ds;

N

R, n

ot r

epor

ted

; Ob

s, o

bse

rvat

iona

l; P

P, p

re-p

ost

inte

rven

tion;

QE

, qua

si-e

xper

imen

tal;

QO

L, q

ualit

y of

life

; RC

T, r

and

omis

ed c

ontr

olle

d t

rial;

RR

T,  r

enal

rep

lace

men

t th

erap

y; S

BP,

sys

tolic

blo

od p

ress

ure;

SM

, sel

f-m

anag

emen

t; T

IA, t

rans

ient

isch

aem

ic

atta

ck.

Tab

le 4

C

ontin

ued

on January 13, 2020 by guest. Protected by copyright.

http://bmjopen.bm

j.com/

BM

J Open: first published as 10.1136/bm

jopen-2017-019814 on 22 March 2018. D

ownloaded from

Page 17: Open Access Research Self-management interventions for ... · kidney disease (CKD). setting Community-based. Participants Adults with CKD stages 1–5 (not requiring kidney replacement

17Donald M, et al. BMJ Open 2018;8:e019814. doi:10.1136/bmjopen-2017-019814

Open Access

Tab

le 5

S

umm

ary

of q

ualit

ativ

e st

udie

s

Stu

dy

(Ref

eren

ce)

Targ

et p

op

ulat

ion

Num

ber

of

par

tici

pan

tsA

im/I

nter

vent

ion

Met

hod

sS

umm

ary

of

find

ing

s

Blic

kem

 et 

al21

CK

D s

tage

320

‘To

exp

lore

the

exp

erie

nce

of

pat

ient

-led

ass

essm

ent

for

netw

ork

sup

por

t (P

LAN

S) f

rom

the

p

ersp

ectiv

es o

f par

ticip

ants

and

te

lep

hone

sup

por

t w

orke

rs.’

(p. 1

)In

terv

entio

n: s

ee t

able

 4

Bla

kem

an e

t al

 46

Inte

rvie

ws

and

focu

s gr

oup

s: n

o an

alyt

ic

met

hod

olog

y d

iscu

ssed

Mix

ed r

ecep

tion

from

par

ticip

ants

Form

ulat

ion

of ‘h

ealth

’ in

ever

yday

life

(ie,

p

artic

ipan

ts u

naw

are

of h

avin

g C

KD

or

its

sign

ifica

nce—

conf

used

ab

out

rele

vanc

e of

P

LAN

S)

Traj

ecto

ries

and

tip

pin

g p

oint

s (ie

, eng

agem

ent

in

PLA

NS

dep

end

ed o

n p

artic

ipan

ts’ s

tage

of l

ife—

eith

er c

ould

influ

ence

try

ing

new

thi

ngs

or d

isru

pt

rout

ines

)

►Tr

ust

in n

etw

orks

(ie,

unw

illin

gnes

s to

see

k su

pp

ort,

intr

usiv

e, o

ther

s sa

w im

pro

ved

aw

aren

ess/

acce

ss t

o lo

cal r

esou

rces

; tai

lore

d

sup

por

t)

Hei

den

 et 

al 69

CK

D p

red

ialy

sis,

d

ialy

sis,

tra

nsp

lant

5To

iden

tify

par

ticip

ant’s

per

spec

tive

rega

rdin

g a

‘web

ap

plic

atio

n p

roto

typ

e to

hel

p m

ake

dec

isio

ns

rega

rdin

g d

iet

rest

rictio

ns a

nd

pho

spha

te b

ind

er d

osag

e.’ (

p. 5

44)

Inte

rven

tion:

Web

site

too

l for

p

atie

nts

that

incl

uded

thr

ee

com

pon

ents

—d

iet/

fluid

ed

ucat

ion;

d

iet

regi

stry

and

pho

spha

te b

ind

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18 Donald M, et al. BMJ Open 2018;8:e019814. doi:10.1136/bmjopen-2017-019814

Open Access

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Open Access

protocols, changing health behaviours, shared decision making with healthcare providers),7 75 along with evalua-tion 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 physiolog-ical 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 al12 similarly reported a lack of research related to patient perspectives on self-man-agement 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 chal-lenge 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-man-agement 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-man-agement 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 incorpo-rate intervention frameworks to codevelop and eval-uate a self-management intervention based on a sound behavioural theory involving our national patient part-ners, specialists, primary care providers and decision makers.

Author affiliations1Department of Medicine, University of Calgary, Calgary, Canada2Interdisciplinary Chronic Disease Collaboration, Calgary, Canada3Department of Community Health Sciences, University of Calgary, Calgary, Canada4Daphne Cockwell School of Nursing, Ryerson University, Toronto, Canada5Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, Canada6Li Ka Shing Knowledge Institute, St. Michael’s Hospital, Toronto, Canada7Can-SOLVE CKD Network, Patient Partner, Pouce Coupe, Canada8Sydney School of Public Health, The University of Sydney, Sydney, New South Wales9Department of Family and Community Medicine, University of Toronto, Toronto, Canada10Lawson Health Research Institute, London, UK11Centre for Mental Health, University Health Network, Toronto, Canada12Department of Psychiatry, University of Toronto, Toronto, Canada13Department of Medicine, McMaster University, Ontario, Canada14Department of Pediatrics, University of Calgary, Calgary, Canada

Acknowledgements 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.

Open Access This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http:// creativecommons. org/ licenses/ by- nc/ 4. 0/

© Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

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