A systematic review of factors influencing decision-making in adults living with chronic kidney disease

Patient Education and Counseling 76 (2009) 149–158

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Review

A systematic review of factors influencing decision-making in adults living with chronic kidney disease Mary Ann Murray a,*, Gillian Brunier b, Jenny Oey Chung c, Lee Ann Craig d, Cynthia Mills e, Alison Thomas f, Dawn Stacey a a

School of Nursing, University of Ottawa, Canada Division of Nephrology, Sunnybrook Health Sciences Center, Canada Registered Nurses’ Association of Ontario, Canada d Family Medicine/Palliative Care, London Health Sciences Center, Canada e Hotel Dieu Grace Hospital, Canada f St. Michaels Hospital, Canada b c

A R T I C L E I N F O

A B S T R A C T

Article history: Received 5 August 2008 Received in revised form 25 October 2008 Accepted 6 December 2008

Objective: To identify factors influencing patient involvement in decision-making in the context of chronic kidney disease (CKD) and effective interventions to support their decision-making needs. Methods: A systematic review included studies and decision support tools that involved: (1) adults with CKD, (2) studies published from 1998–2008; and (3) a focus on patient decisionmaking needs, and/or barriers and facilitators to shared decision-making. Studies were quality appraised. Results: Forty studies were appraised. These studies mainly focused on the decisions patients with CKD faced around the choice of renal replacement therapy and withholding/withdrawing dialysis. Moreover, studies typically focused on health care professional’s provision of information about the decision rather than identifying decisional conflict and supporting patients in decision-making. No studies were found that identified the patient’s point of view about factors that might influence or inhibit quality decision-making. Factors influencing CKD patient’s participation in decision included: (1) interpersonal relationships; (2) preservation of current well being, normality and quality of life; (3) need for control; and (4) personal importance on benefits and risks. Of the four patient decision aids identified, none had been evaluated for effectiveness. Conclusion: Patients with CKD face decisions that are likely to cause decisional conflict. Most studies focused on information needs related to renal replacement therapy and withdrawing or withholding dialysis. There was less focus on other decision-making needs in the context of those choices and across the trajectory of CKD. Although patient decision aids and implementation of shared decision-making have been evaluated in patients with other medical conditions, little is known about interventions to support patients with CKD making quality decisions. Practice implications: Patients with CKD have decision-making needs across the trajectory of their illness. Although little is known about supporting patients with CKD decision-making, support could be provided with protocols and tools that have been developed for other chronic illness situations. Development of CKD-specific clinical practice guidelines that include decision support best practices could benefit CKD patients. Research priorities include development and evaluation of CKD focused decision support tools and processes. ß 2008 Elsevier Ireland Ltd. All rights reserved.

Keywords: Chronic kidney disease End stage renal disease Shared decision-making Decision support Patient decision aids Systematic review

* Corresponding author at: School of Nursing, University of Ottawa, 451 Smyth Road, Ottawa, On., Canada K1H 8M5. Tel.: +1 613 837 7284. E-mail address: [email protected] (M.A. Murray). 0738-3991/$ – see front matter ß 2008 Elsevier Ireland Ltd. All rights reserved. doi:10.1016/j.pec.2008.12.010

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1. Background Chronic kidney disease (CKD) is a global health issue associated with significant mortality and morbidity [1]. Outcomes of CKD include kidney failure and complications from decreased kidney function. End stage CKD is managed by dialysis, renal transplant or supportive end-of-life care. Patients with end stage renal disease (ESRD), not receiving active renal replacement therapy, will die from their kidney failure. In addition to managing multiple physiologic changes patients living with CKD frequently experience psychosocial stress. Patients living with CKD face numerous decisions throughout their illness. While many patients want to participate in health related decisions [2–5] they may experience decisional conflict when considering options and the importance they attach to the pros and cons associated with those options [6]. Modifiable factors

such as knowledge gaps, uncertainty regarding outcomes, lack of clarity about what matters most, and feeling pressured to choose a particular option exacerbates the decisional conflict [7]. For instance, patients’ attitudes towards decisions such as whether or not to accept the offer of a living donor kidney transplant can vary. Patients with unresolved decisional conflict are more likely to change their mind, delay decision-making, have regret and/or blame providers [8,9]. Effective interventions to guide patients in decision-making are decision aids and shared decision-making [10]. Patients exposed to decision aids are more likely to be informed, have realistic expectations of outcomes of options, participate actively in decision-making, and feel lower decisional conflict [11]. However, research shows that practitioners have inadequate skills in supporting patient decision-making. Practitioners have identified time constraints, patient characteristics or clinical situation,

Fig. 1. Search Strategy used in MEDLINE database.

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perceived patient preferences for involvement in decision-making and disagreement with asking patients about their preferred role in decision-making as barriers to using decision aids [12]. Within the nephrology community, there is growing interest in strengthening the quality of decision support provided to patients and families living with CKD, yet relatively little is known about how best to achieve this goal [13–16]. Recognizing the current reality of patients facing multiple decisions across the trajectory of CKD a panel was convened by the Registered Nurses Association of Ontario to develop a best practice guideline, Decision Support for Adults Living with Chronic Kidney Disease. As a first step, a systematic review was conducted to identify factors influencing patient decision-making related to CKD. More specifically, we sought to (1) describe the decisionmaking needs of patients with CKD; (2) identity and quality appraise decision support tools to meet the identified needs; and (3) explore barriers and facilitators to providing patient decision support to adults living with CKD.

a renal dietitian identified the initial search terms. The Cochrane Effective Practice and Organization of Care protocols http:// epoc.cochrane.org/en/newPage1.html) guided the search strategy for the following databases: Cochrane Database of Systematic Reviews; the Cochrane Central Register of Controlled Trials; MEDLINE (1996 to December 2007); CINAHL (1982 to December 2007); PsychINFO (1985 to January 2008); EMBASE (1980 to 2008); and the Cochrane Inventory of Patient Decision Aids (OHRI, University of Ottawa). Fig. 1 illustrates the search strategy used in the MEDLINE database. The search terms were adapted to each database used in the review. The tables of contents of journals most frequently identified in the electronic search were reviewed (Medical Decision Making; BMC Medical Informatics and Decision Making; Kidney International; Peritoneal Dialysis International; American Journal of Kidney Diseases) between January 2004 and 2008. Reference lists of retrieved papers were scanned, and panel members reviewed their personal files and polled contacts for relevant papers.

2. Methods

2.2. Selection process

2.1. Search protocol

Studies were eligible for inclusion if: (1) involved adult participants (18 years) with CKD; (2) published between 1998 and 2008; and (3) focused on decision-making needs, information needs and/or barriers and facilitators to shared decision-making.

A panel consisting of nephrology nurse clinicians, educators, and researchers, along with experts in patient decision support and

Fig. 1. (Continued ).

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Table 1 Description of quality ratings for studies included in the review.a. Rating

Systematic reviews (AMSTAR—7 criteria)

RCT (EPHP—6 criteria)

Descriptive studies (CASP)

Qualitative studies (CASP)

High (H) Moderate (M) Weak (W)

6–7 criteria met 4–5 criteria met 3 criteria met

4–6 criteria met 3–4 criteria met 2 criteria weak

80% of criteria met 60–79.9% criteria met <60% of criteria met

80% of criteria met 60–79.9% criteria met <60% of criteria met

a

Narrative review not subjected to quality rating.

When no studies linking adults with CKD and patient decision support factors were found, the search was repeated without the CKD restrictor. English language studies were assessed and no study design was excluded. Studies with samples of patients with acute renal failure not experiencing CKD were excluded. Titles and abstracts of potential studies were reviewed independently by two research assistants. Two investigators independently extracted data with disagreements resolved by consensus. Quality appraisals were conducted by a research assistant using the Critical Appraisal Skills Program (CASP) criteria for descriptive observational studies [17]; the Effective Public Health Practice Project (EPHPP) tools for studies evaluating the effectiveness of interventions, [18] and the Measurement Tool to Assess Review (AMSTAR) criteria for systematic reviews [19]. Narrative reviews were not subjected to quality scoring. Table 1 summarizes the quality score. Identified patient decision aids (PtDAs) were assessed using the International Patient Decision Aid Standards (IPDAS) criteria [15]. Study findings were extracted using standardized forms and mapped to the review objectives. 3. Results Of 1653 citations reviewed, 34 studies, 5 systematic reviews, 1 narrative review and 4 PDAs were identified for data abstraction and analysis (Fig. 2). As well, one protocol, in the Cochrane Collaboration, focusing on the adoption of patient decision aids among healthcare providers [20] was found, however findings were not yet published. When contacted, the protocol authors indicated that no CKD-specific papers had been identified in their search.

3.1. CKD patients’ decision-making Thirty-four studies and one narrative review described factors related to patient decisions, information needs and decision modifiers (Table 2). Descriptive reports involving various combinations of information gathered from patients, their informal caregivers, heath care providers and case records formed the bulk of these studies. The most frequently reported decisions related to renal replacement treatment options, lifestyle and social issues. Data from nine countries and more than 7600 participants, mostly patients undergoing renal replacement therapy, were represented in the included studies. Overall the quality ratings for studies specific to CKD were moderate to weak with 3 out of 34 scoring a high rating (Table 2). 3.1.1. Decisions faced by patients with CKD Of 30 studies describing decisions faced by patients with CKD, 22 [21–43] were descriptive, 6 qualitative [14,44–47] 1 a randomized control trial [48] and 1 a narrative review [49]. Type of renal replacement therapy, withholding or withdrawing dialysis, and renal transplant were the most frequently reported decisions. Less frequently reported decisions included scheduling of treatments, adherence to care plans, selection of vascular access devices, and preferred level of participation in self-care (Table 3). 3.1.2. Information needs of patients with CKD Ten studies described patients’ information needs. Of those, five used a descriptive design [15,42,50–52] and four used qualitative designs [14,46,53,54]. According to the information provision

Fig. 2. Flow of Identified Studies through Review.

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Table 2 Summary of findings from CKD-specific studies mapped to review objectives. Objective

Investigator(s), year, location

Design

Quality rating*

Data source

Identified factors

Decisions faced by CKD patients

Manns and others; 2005; Canada

RCT

M

70 patients in a pre-dialysis clinic

Type of renal replacement therapy (i.e.: in-center vs. home: PD vs. HD; conventional 3 per week vs. short, daily in-center dialysis (six 2–3 h treatments)

Agraharkar and others; 2003; USA Anderson and others, 2006; USA Bass and others 2004; USA

Descriptive Descriptive Descriptive

W W W

Coupe, 1998; UK

Descriptive

W

Halpern SD and others 2004; USA

Descriptive

M

Hines and others, 2001;

Descriptive

M

King and others; 1998; 2000;USA Moss AH and others 2002; USA Orsino and others 2003; Canada

Descriptive Descriptive Descriptive

W M W

Wuerth and others 2002; USA

Descriptive

H

136 ESRD patients starting dialysis 109 PD patients at a nursing home 109 patients on hemodialysis therapy, 57 on CAPD, 22 on CCPD 297 patients receiving pre-dialysis education 126 patients receiving conventional hemodialysis 240 pairs of dialysis patients and designated surrogates 844 transplant and dialysis patients 469 hemodialysis patients 197 consecutive ESRD patients receiving renal replacement therapy 40 patients (20 CPD, 20 HD) new to dialysis (6 months)

Calvin 2004; USA

Qualitative

H

Davison 2006; CAN Tweed and others 2005; UK

Qualitative Qualitative

M M

de-Montez 2006; USA

Descriptive

M

240 ESRD hemodialysis patients (133 males, 107 females)

Holley and others 1999; USA

Descriptive

W

Miura and others 2001; Japan Swartz and others, 2004; USA Wenger and others, 2000

Descriptive Descriptive Descriptive

W M M

400 hemodialysis patients in 2 geographic areas 450 dialysis patients in 5 hospitals 138 patients starting RRT 565 seriously ill hospitalized patients with renal failure

Ashby M and others 2005; Australia

Qualitative

W

16 patients and/or caregivers

Ayanian and others 1999; USA

Descriptive

M

1392 patients with ESRD

Gordon, 2001; USA Sharkey and others 2003; USA Polaschek 2005; New Zealand Lin and others, 2005; UK

Descriptive Descriptive Qualitative Qualitative

W W W H

79 HD patients 128 patients 6 dialysis patients 62 chronic HD patients

Bay and others; 1998; USA

Descriptive

W

Bliwise and others, 2001

Descriptive

M

Gordon and others, 2003; USA

Descriptive

W

Firooz and others, 2007; Iran

Descriptive

W

128 HD patients and 64 health care professionals 242 ESRD patients aged 60 yrs+ who underwent HD 168 patients who shortened or skipped treatments 250 kidney transplant recipients

Richard 2006; USA

Narrative review

-

64 studies (quantitative and qualitative)

Preferred level of participation in self-care in ESRD treatment

Badzek and others 1998; USA

Descriptive

W

142 patients 65+ in 17 outpatient hemodialysis units

Lee and others, 2002 Hong Kong

Descriptive

M

62 patients on dialysis 3+ months

Mahajan and others, 2004; India

Descriptive

W

342 patients on HD, 66 on PD, 24 nephrologists

Self-care (e.g., dietary and fluid management/restrictions/ consequences of electrolyte imbalances) Self-care (e.g., dietary and fluid management/ restrictions—information about kidney disease) Impact of renal replacement (e.g., dialysis type and scheduling; impact on physical appearance, sexual activity, work and social life, implications of refusing dialysis)

Information needs of patients with CKD

20 hemodialysis patients (11 men; 19 women; mean age 56) 24 patients with ESRD 9 (5 males, 4 females) pre-dialysis patients Dialysis decisions (i.e.: withhold or withdraw dialysis or continue)

Kidney transplant decisions (i.e.: living related donor vs. deceased; when to plan for transplant)

HD vascular access preference Scheduling/timing of HD To adhere to dialysis plan or not To adhere to sun-protective behaviours or not

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154 Table 2 (Continued ) Objective

Factors influencing decision-making in patients with CKD

Investigator(s), year, location

Design

Quality rating*

Data source

Identified factors

Orsino and others, 2003; Canada

Descriptive

W

197 ESRD patients receiving renal replacement therapy

Firooz and others 2007; Iran

Descriptive

W

250 kidney transplant recipients

Management (e.g., dialysis type and scheduling; impact on physical appearance, sexual activity, work and social life, implications of refusing dialysis) transplant issues (e.g. psychological adjustments, risks/benefits/surgery/ recovery of living donor; reasons donors donate; how to ask the ‘‘donation question’’; others experiences; reasons/risks/ benefits for transplant) Skin care prevention; risk of skin cancer post-transplant

Davison, 2006; Canada

Qualitative

M

24 ESRD patients

Lin and others, 2005; Taiwan

Qualitative

H

12 ESRD patients

Andrew 2001; UK

Qualitative

W

Waterman and others, 2006; USA

Qualitative

M

10 pre-dialysis patients and families 33 kidney transplant donors, recipients and family members

Gordon 2001; USA

Descriptive

W

79 HD patients

End-of-life care (e.g.: advance directives, impact of CKD on lifestyle and relationships) Family opinions, confirmation from professionals, alternate options Management of pre-dialysis experience i.e.: lifestyle issues Experience/opinions of other donors and recipients; surgery and recovery of donors Uncertainty about future

Fear of bad outcomes/preservation of current lifestyle/well being Perceived benefit/risk weightings CKD

Orsino and others, 2003; Canada

Wuerth and others, 2002; USA

Descriptive

Descriptive

W

H

197 ESRD patients receiving renal replacement therapy

40 patients (20 CPD, 20 HD) starting dialysis within past 6 months

Providers opinions Gender (women gave greater weight to side effect profile, symptom relief, psychological considerations, religious cultural/beliefs than men when considering transplant decisions) Age: younger patients preferred more independent decision-making role Physician and family opinion Convenience/complexity of therapy

*

Ashby and others, 2005; Austrailia

Qualitative

W

16 patients and/or carers

Calvin 2004; USA

Qualitative

H

20 HD patients (11 males; 19 females; mean age 56)

Davison, 2006; Canada

Qualitative

M

24 ESRD patients

Lin and others, 2005; Taiwan

Qualitative

H

12 ESRD patients

Tweed and others, 2005; UK

Qualitative

M

9 (5 males, 4 females) pre-dialysis patients

Quality of life; perceived benefits/ harms; self-perceived burden; patient/physician interaction Maintaining control; relationship with others; provider communication skills Control; relationship with others; provider communication skills quality of life. Personal weightings of benefit/ risk experience of others interpersonal relationships Quality of life experience of others interpersonal relationship preserving current life style and well being

H, high; M, moderate; W, weak.

subsection of the IPDAS criteria all studies identified at least one of the criteria. Information needs included: the natural history of the illness; treatment procedures; potential benefits of treatments; severity and potential of side effects; sensitivity and specificity of screening/diagnostic tests; and follow-up procedures [55]. The most common information need identified was severity and potential side effects (Table 2). Five of ten studies reported information needs related to condition management, social and

lifestyle factors. Reported information needs included (1) general knowledge about kidney disease, treatment options and renal transplant; (2) lifestyle management; (3) self-care (e.g., dietary and fluid management, skin care); (4) end-of-life planning; and (5) exposure to others’ opinions and experiences. Variability in patients’ knowledge of treatment options and sources of information emerged. Sixty-six percent of newly diagnosed US patients with ESRD, who were urgently started on

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Table 3 Information needs elicited in studies mapped against lifestyle/social information needs and IPDAS information domains. Investigator

Andrew 2001; Sweden Lee 2002; Hong Kong Badzek 1998; US Davison 2006; Canada Firooz and others 2007; Iran Mehrotra and others 2005; US Mahajan and others 2004; India Orsino and others, 2003; Canada Waterman and others 2006; US

Needs domain Lifestyle/social information domain

IPDAS information domains Natural history of illness

Treatment procedures

Potential benefits of treatments

Severity and potential of side effects

Sensitivity and specificity of screening/ diagnostic tests

Follow-up procedures

X – – X – – X X X

X X X X – – – – –

– X –

– – – – – X X X –

– – X X X X X – –

– – –

– – –

– – – – –

– – X – –

dialysis (n = 229) reported being informed about peritoneal dialysis (PD) options [52], while a cohort of HD patients (n = 342) from India indicated that less than a third (30.4%) knew that PD was an option [29]. A Canadian study (n = 197) found that while older as well as younger patients on dialysis had primarily consulted their physician for information related to starting dialysis, younger patients were more likely to have also consulted their nurse and other renal patients [45]. As well, opinions of family members had a greater influence on the type of dialysis chosen by older participants. 3.1.3. Factors influencing decision-making in patients with CKD Of eight studies that elicited factors influencing patients’ decisions as a primary outcome [13,14,29,30,44–46,56], none identified whether the patient viewed the influencing factors as being barriers or facilitators. Overall, the studies assessed factors influencing decisions related to stopping dialysis [14,44], endof-life care and advanced directives [15,30,46,56,57] and treatment decisions [30,46,57]. Patient-level factors that influence decision-making in patients with CKD included: (1) interpersonal relationships (e.g.: opinions of family and providers [29,56,57]; knowing others’ experiences [45]; provider/ patient interactions; self-perceived burden to family [56]; trust in providers [30,45]; (2) preservation of current well being, normality and quality of life (e.g. concerns about impact on daily living [57]; maintaining current lifestyle [14]; (3) need for control (wish for personal preferences to shape future [30,56]; managing the situation [44]; maintaining individuality [44]; being personally responsible [45,46,57]) and (4) personal weightings for benefit/risk ratios (e.g. perceived expectation of outcomes and consequences of dialysis [44]; willingness to take chances [56]; fear if things do not go well [56]; potential for disappointment [15]. One Canadian study of 197 patients with ESRD identified age-related differences in preferences for involvement in decision-making with older participants generally preferring their health care team to make decisions for them [12].

– X X X X

Both CKD-specific PtDAs and the generic Should I stop lifeprolonging treatment? were developed by Healthwise, a large US based consumer health information-provider. These three PtDAs are self-administered, paper documents that can be reviewed by a patient prior to consultation with a health care professional and are available on an open-access website (http://www.healthwise.net). The development process used by Healthwise for each of the PtDAs is available in a separate online document. Field testing was not reported for any of the Healthwise PtDAs. The other generic PtDA, The Ottawa Patient Decision Guide, was developed by the Ottawa Health Research Institute (University of Ottawa). This PtDA is available online as a two-page, selfadministered document that can be printed and completed by hand or completed and printed online (http://decisionaid.ohri.ca/ decguide.html). The Guide has been used as a template for over 30 PDAs evaluated in clinical trials. Quality assessments of the identified PtDAs are detailed in Table 4. As The Ottawa Patient Decision Guide is not targeted for a specific health condition assessment, a number of IPDAS domain criteria were not applicable. Effectiveness criteria for all of the identified PtDAs were not able to be assessed. 3.3. Impact of decision support interventions No CKD-related studies were found that assessed the effect of decision support interventions on decision quality measures (e.g., improved knowledge; decreased decisional conflict; more realistic expectations; decision congruent with patients’ values). 3.4. Barriers and facilitators to providing patient decision support No studies were found that investigated barriers and facilitators to providing patient decision support to patients with CKD. One systematic review, non-specific to CKD that described health care professionals’ perceptions of barriers and facilitators to implementing decision support was found [12]. Participants in studies contained within the Gravel review [12] were predominantly physicians (89%).

3.2. Decision support tools for CKD 4. Discussion Two patient decision aids (PtDAs) specific to CKD (What type of dialysis should I have; should I stop kidney dialysis?) were found in the Ottawa Health Research Institutes A to Z Inventory of Decision Aids (www.OHRI.ca). No studies were identified that had evaluated these patient decision support tools for CKD. As well, two generic PtDAs (Should I stop life-prolonging treatment? and The Ottawa Patient Decision Guide) were identified in the A to Z Decision Aid Inventory.

In this review of factors influencing patient decision-making in the context of CKD, most studies focused on information needs and dialysis treatment options, few interventions were identified, and no studies have evaluated barriers to providing decision support within clinical care for patients with CKD. Of four PtDAs relevant to patients with CKD, two were narrowly focused on dialysis decisions, one on end-of-life care, and one that is a generic

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Table 4 Quality assessment of patient decision aids for patients with CKD. IPDAS based patient decision aid criteria (M, met; P, partially met; N, none met; N/A, not applicable; U/A, unable to assess) I. Content Provides information about options Probabilities of outcomes presented in balanced and understandable way Clarifies patients’ values Guidance in deliberation and communication II. Development process Balanced manner presentation of information Systematic development process described Current scientific evidence is cited Possible conflicts of interest disclosed Use plain language

What type of dialysis should I have? (Healthwise)

Should I stop kidney dialysis? (Healthwise)

Should I stop life-prolonging treatment? (Healthwise)

Ottawa Personal Decision Guide (Ottawa Health Research Institute)

P N

M P

M P

N/A N/A

P P

P M

M M

M M

M P P P P

M P P P P

M P P P P

M M N/A N/A M

U/A

U/A

III. Effectiveness criteria: does the PDA ensure decision-making is informed and value-based? Improves decision quality and decision process. U/A U/A

decision aid. As such, these interventions do not reflect the range or scope of decisions faced by patients with CKD. As well, to our knowledge the dialysis decision aids have not been evaluated. Of the 34 primary studies examining factors influencing patient decision-making in CKD (Table 2), two-thirds were published between 2002 and 2007 suggesting this is an area of burgeoning interest. However, evidence is limited to information needs without consideration of other factors influencing patients’ decision-making such as values, resources, and others’ opinions. Our findings confirm that patients with CKD typically have a need for information about kidney disease, renal replacement options, self-care, and end-of-life issues. This was observed across several countries and among patients who have been newly diagnosed as well as those who have been on renal replacement therapy for several years. The challenge of meeting the information needs of patients with CKD with current information resources was highlighted in a recent audit of patient information materials about dialysis options used in 47 UK renal units [58]. This audit revealed that most of the information materials were hard to understand, lacked information about risks and did not include techniques to facilitate patient involvement in decision-making. In contrast, welldesigned information written in clear language can improve patients’ health knowledge [10]. Providing individually adapted information is also central to true patient participation [10]. Attention to the design and quality of printed materials developed to facilitate patient knowledge of CKD is an area that requires immediate attention. As well, practitioners need to pay attention to the quality of the educational resources and use IPDAS standards for assessing quality. From this review, a beginning typology of factors that influence decision-making in CKD emerges as interpersonal relationships; life values (e.g. preservation of current well being, normality, and quality of life); need for control; and personal weightings for benefit/risk ratios. These factors were consistent across the continuum of CKD from prevention through treatment to palliation. More research is required to enhance our understanding of how these factors vary across the course of the disease by culture, age, gender, or health care delivery system. In the meantime, health care professionals need to assess the decisionmaking preferences of patients with CKD and understand that personal and psychosocial factors are important aspects of patients’ decisions in the context of CKD. Program planning for CKD must include coordinated care systems which recognize the spectrum of decisions and multiple factors patients consider across the course of their illness. An

example of a decision support patient management strategy could be a program calling for all newly diagnosed CKD patients to attend a goals of care planning meeting where preferences for participation in decision-making would be elicited, documented and acted on. In parallel, perspectives gained from future studies examining lifestyle, social, environmental and practical concerns influencing patients’ decision-making in the context of CKD could help to strengthen approaches to patient-centered care in this population. 4.1. Limitations Notwithstanding the important contribution of this review, some limitations exist. Inconsistencies in terminology and idiosyncrasies in database index headings influenced the final data set and ultimately limit the review. However, because sampling and heterogeneity of interview tools limit the type of data obtained it is likely that the full range of patient information needs have not been represented. Diversity of study designs and outcome measures makes it impossible to synthesize findings with meta-analysis techniques. However, the descriptive review presented here is appropriate for synthesizing diverse forms of evidence. Furthermore, an explicit and transparent approach to assess the methodological quality of included studies was used. 4.2. Practice implications Best practices for patient-centered care clearly recommend the provision of providing decision support [59,60]. The scope of decision-making needs described by patients living with CKD confirms the need for inter-professional collaboration. However, little is known about the perspective and contribution of nonphysician providers in patient decision support. In the meantime all clinicians need to actively inquire about patients’ desired role in decision-making and implement strategies into care planning to meet patient decision-making needs. Clinicians also need to recognize that the decision-making needs of patients living with CKD encompass social, emotional and practical domains as well as biomedical concerns. 5. Conclusion The results of our review identify gaps in our knowledge about how best to meet patients’ information and decision-making needs while living with CKD. While we recognize that evidence-based

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decision support is in the early stages of development in CKD care, attention to establishing best practices through research and modeling could improve our understanding of patients’ decision support needs across the trajectory of CKD and the quality of those decisions. As well, future research could focus on furthering our understanding of patient information and decision-making needs, evaluation of patient decision aids in practice and assessment of the impact of these evidence-based interventions when used in clinical practice.

Acknowledgements We would like to acknowledge the Registered Nurses Association of Ontario (RNAO) and the volunteer members of the RNAO Best Practice Guideline Development Panel for ‘Decision Support for Adults with Chronic Kidney Disease’.

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