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NDT Advance Access published online on June 24, 2008
Nephrology Dialysis Transplantation, doi:10.1093/ndt/gfn359
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© The Author [2008]. Published by Oxford University Press on behalf of ERA-EDTA. All rights reserved. For Permissions, please e-mail: journals.permissions@oxfordjournals.org


Why do patients choose self-care dialysis?

Kevin McLaughlin1, Heather Jones2, Carmen VanderStraeten2, Cynthia Mills2, Marilyn Visser2, Ken Taub1 and Braden Manns1,3

1 Department of Medicine, Division of Nephrology, University of Calgary 2 Southern Alberta Renal Program 3 Department of Community Health Sciences, University of Calgary, Calgary, Canada

Correspondence and offprint requests to: Kevin McLaughlin, Foothills Medical Centre, 1403 29th St NW, Calgary, AB, T2N-2T9, Canada. Tel: +1-403-944-2510; Fax: +1-403-944-3199; E-mail: kevin.mclaughlin{at}calgaryhealthregion.ca



   Abstract
Top
 Abstract
Introduction
 Methods
 Results
 Discussion
 Conclusion
 References
 
Background. Self-care dialysis (SCD) is associated with cost savings and possibly improved quality of life compared to in-centre haemodialysis. Despite this, less than one in four dialysis patients are currently treated with SCD. Our objectives were to identify perceived advantages of SCD associated with increased odds of selecting SCD, and to evaluate the effect of an educational intervention on patients’ perceptions of these advantages.

Methods. We randomized patients with GFR<30 ml/min to standard pre-dialysis education or a multifaceted educational intervention. After each component of the intervention, participants completed a questionnaire on which they identified advantages of SCD and indicated their preferred dialysis modality. We used inductive coding to identify perceived advantages of SCD.

Results. Seventy patients participated in the study. We identified three advantages of SCD: freedom, lifestyle and control. Of these, freedom and lifestyle were associated with increased odds of selecting SCD [OR 9.1 (2.0, 41.3) and 7.0 (1.6, 29.7), respectively]. We combined these advantages for receiver-operating characteristic (ROC) analysis to assess accuracy in predicting patients’ intended choice of dialysis. The area under the ROC curve was 0.82 (0.70, 0.93). Patients who received the educational intervention were more likely to perceive freedom and control as advantages, and were less likely to identify no advantages of SCD.

Conclusion. Patients who identify freedom and lifestyle advantages of SCD are more likely to choose SCD. Providing additional education on dialysis modalities increases patients’ perceptions of the advantages of SCD and the odds of them selecting SCD.

Keywords: patient decision making; patient education; self-care dialysis



   Introduction
Top
 Abstract
 Introduction
Methods
 Results
 Discussion
 Conclusion
 References
 
Peritoneal dialysis, home haemodialysis (including nocturnal haemodialysis) and self-care haemodialysis are the self-care dialysis modalities (SCD) currently available in Canada. Compared to in-centre haemodialysis, SCD modalities save nursing resources and cost ~CDN$30 000 (equivalent to US$30 000 or EUR20 000) less per year of treatment [1,2]. Despite these cost savings, and possibly better health-related quality of life associated with SCD [3,4], <25% of prevalent dialysis patients in Canada are treated with SCD [5]. This rate is similar in the United Kingdom (23%) and lower in the United States, where ~8% of prevalent dialysis patients receive SCD [6,7].

We previously identified barriers to SCD in a prevalent in-centre haemodialysis cohort [8]. The most frequent barriers were lack of understanding of SCD, lack of self-efficacy in performing SCD, fear of social isolation and concern about dialyzing without supervision. These barriers served as our needs assessment for an educational intervention designed to increase the number of patients who select SCD. Subsequently, we reported the results of a randomized controlled trial where we observed that this educational intervention increased the proportion of patients selecting SCD [9]. As part of this trial, we collected data on perceived advantages of SCD from the patients’ perspectives. Unlike our previous study with the prevalent haemodialysis cohort [8], here we collected reasons for making dialysis choices at the time the choices were being made, rather than retrospectively. Also, in this study we also collected data using open rather than closed questions, and focused on reasons why patients choose SCD rather than why they did not choose SCD.

Our first objective was to identify perceived advantages of SCD that were associated with selecting SCD as a treatment for chronic kidney disease. Our second objective was to evaluate the effect of our educational intervention on perceived advantages of SCD.



   Methods
Top
 Abstract
 Introduction
 Methods
Results
 Discussion
 Conclusion
 References
 
We described the methodology of the randomized control trial in our earlier publication [9]. Here we focus on the qualitative component of this study.

Patients
We enrolled patients from the Southern Alberta Renal Program (SARP) progressive renal care clinic, which is a multidisciplinary chronic kidney disease clinic where patients are case-managed by a renal nurse clinician. At this clinic patients receive teaching on kidney disease, diet and different modalities of renal replacement therapy (RRT) at an initial 3-h, one-on-one session where patients are seen by a nurse, a dietician and a social worker. The care team, including a nephrologist, then follows the patient every 3–6 months.

Patients were eligible for enrolment in this study if they had received standard teaching about dialysis modalities from the multidisciplinary team and had a GFR <30 ml/min/1.73 m2. We excluded patients if they had significant cognitive dysfunction, could not speak English (unless they had family members who spoke English and could translate), were not personally independent (i.e. were unable to perform activities of daily living), were currently on dialysis, were scheduled to receive a kidney transplant within the next 6 months or were unable or unwilling to provide informed consent.

Educational intervention
Following randomization, we gave patients in the educational intervention strategy four written manuals. The first, entitled Choosing the Type of Dialysis Best Suited to You described the different types of dialysis, including the potential advantages of SCD, such as flexibility in scheduling dialysis (home/self-care haemodialysis), easier planning travel (peritoneal dialysis) and flexibility with diet and fluid intake (peritoneal dialysis). The other written manuals described the three forms of SCD in more detail (at the time of this study, nocturnal haemodialysis was unavailable in the SARP). Patients also received a copy of a 15-min ‘SCD’ video that showed the different types of dialysis, potential advantages and disadvantages of SCD, and patient testimonials describing the impact of the different modalities on everyday life.

Patients in the educational intervention strategy then attended a small group teaching session 2 weeks after receiving the manuals and video. Between three and six patients attended each session, along with their accompanying family members, a nephrologist and a predialysis nurse. The session lasted 90 min and began with a brainstorming session where patients listed the advantages and disadvantages of SCD. Following this, they broke into smaller groups where we asked them to solve different ‘dialysis problems’. To solve these problems, they needed to identify ways of overcoming barriers to SCD. Each small group then presented its solution to the larger group and justified its dialysis choice. Finally, patients viewed selected portions of the ‘SCD’ video.

Study protocol
The Conjoint Health and Research Ethics Board at the University of Calgary approved the study protocol. We described the randomization process in our earlier publication [9]. We felt it was not practical to blind patients given the requirement for active participation in the educational intervention. We assessed outcomes by a questionnaire at baseline (both groups), 2 weeks after the educational material and video were given to patients (intervention group only), and 2 weeks after patients in the intervention group received their small group interactive session (both groups). We gave the baseline and final questionnaires to patients in the control group at the same time as the patients who were randomized to the educational intervention in the same randomization block.

Qualitative data analysis
On each questionnaire, we asked patients to complete a section entitled ‘In my opinion the advantages to self-care dialysis are...’. We used inductive coding, rather than a priori codes, to analyse patients’ responses. This involved transcribing and summarizing free-text data, after which we divided the data into meaningful analytical units, or codes. A single rater (BM) encoded the transcribed data on two occasions, separated by 2 weeks, to assess intra-rater agreement. Two raters (BM and KM) encoded the data independently to assess inter-rater agreement. We used the kappa statistic to evaluate the degree of agreement. Finally, we recorded the frequency of each code and used Spradley's universal semantic relationship method to describe the relationship between codes, categories and the decision to select SCD [10,11].

Statistical analysis
To achieve the first study objective, we used multiple logistic regression in which the dependent variable was intended dialysis modality choice (SCD versus non-SCD) on the post-study questionnaire. We considered the categories identified by qualitative analysis of the final questionnaire—representing perceived advantages of SCD—as potential explanatory variables. We also included interaction terms in the model. We used backward elimination and compared nested models using the likelihood ratio test. We used non-parametric receiver-operating characteristic (ROC) curve analysis to evaluate the accuracy of perceived advantages of SCD in predicting the choice of dialysis modality.

For the second study objective, we used Fisher's exact test to compare the proportion of patients in the intervention and control groups perceiving advantages of SCD at baseline, and McNemar's discordant pair analysis to evaluate changes between the beginning and the end of the study. We used STATA 8.0 software (STATA Corporation, College Station, TX, USA) for all our statistical analyses.



   Results
Top
 Abstract
 Introduction
 Methods
 Results
Discussion
 Conclusion
 References
 
Baseline characteristics and patient follow-up
We enrolled 70 patients, of which 35 were randomized to the control group and 35 to the intervention group. All patients were naïve to RRT, including transplantation. Our patients were typical of North American patients with Stage 4 chronic kidney disease [mean age was 64.4 (60.9, 68.1), 64% were retired and 47% had diabetes]. The mean MDRD-estimated GFR was 20.4 ml/min (18.7, 22.0) and over 75% of patients had attended the multidisciplinary predialysis clinic for >3 months. There were no differences between the groups under specific comorbid conditions or overall comorbidity (data reported previously [9]). Thirty-four control patients completed both the initial and final questionnaires. Thirty intervention patients attended the small group education session and 28 completed the final questionnaire.

Qualitative analysis
We transcribed 132 questionnaires, of which 62 were post-study questionnaires, and identified 23 separate codes (Figure 1). For coding of questionnaire data, intra-rater agreement was 98.8% (kappa statistic 0.91) and inter-rater agreement was 98.6% (kappa statistic 0.88). We divided the 23 codes into four categories: ‘freedom’, ‘lifestyle’, ‘control’ and ‘no advantage’. We interpreted the relationship between codes and categories as attribution: ‘ability to participate in normal activities’ is an attribute of lifestyle. We considered the outcome variable to be selects self-care dialysis. The first three categories are perceived advantages of SCD and we interpreted the semantic relationship between these categories and the outcome variable as rationale: freedom is a rationale for selecting self-care dialysis [11]. Figure 1 shows the semantic relationship between codes, categories and outcome.


Figure 1
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  		Fig. 1 Semantic relationship between codes, categories and outcome.

 
Perceived advantages associated with the selection of SCD
There were no significant interactions in our logistic regression model. Two perceived advantages-–freedom and lifestyle—were associated with increased odds of selecting SCD. The association with control did not reach statistical significance, but we kept this variable in the final model as there was a significant difference between models that included and excluded this variable. Table 1 shows the adjusted odds ratios in the final model. Perceiving no advantage to SCD was associated with reduced odds of selecting SCD [odds ratio 0.06 (0.01, 0.24), P < 0.001].


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  		Table 1 The association between perceived advantages of self-care dialysis and the intended choice of self-care dialysis as a treatment for chronic kidney disease

 
We combined the three perceived advantages of SCD (one point for each) for ROC analysis to evaluate their accuracy in predicting choice of dialysis. Figure 2 shows the ROC curve. The area under the ROC curve was 0.82 (0.70, 0.93), indicating that the combination of advantages was a ‘good’ predictor of dialysis choice [12].


Figure 2
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  		Fig. 2 ROC plot of the advantages of self-care dialysis as a predictor of selecting self-care dialysis.

 
Effect of the educational intervention on the perceived advantages of SCD
At baseline there was no difference between patients in the control and intervention groups in perceived advantages of SCD. In the control group, the proportion of patients perceiving advantages of SCD did not change by the end of the study. In the intervention group, patients were more likely to identify freedom and control as advantages of SCD, and less likely to identify no advantages of SCD (Table 2). There was also a trend towards a higher proportion of patients in the intervention group perceiving lifestyle as an advantage of SCD, although the difference did not reach statistical significance.


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  		Table 2 Effect of educational intervention on perceptions of the advantages of self-care dialysis

 


   Discussion
Top
 Abstract
 Introduction
 Methods
 Results
 Discussion
Conclusion
 References
 
Perceived advantages associated with the selection of SCD
In this study we found that patients’ perceptions of the advantages of SCD predicted their selection of this dialysis modality. In particular, patients who perceived freedom and lifestyle advantages were more likely to choose SCD. This finding is consistent with previously published retrospective studies in which patients reported that greater autonomy, independence and flexibility influenced their selection of SCD [13,14]. Illness-related lifestyle disruptions are one of the major psychological stressors for patients (and their families) with chronic kidney disease [15–17], and it would seem intuitive that patients who identify SCD as a way to minimize these disruptions would be more likely to choose this modality.

Effect of the educational intervention on the perceived advantages of SCD
Compared to the standard dialysis modality education offered by the multidisciplinary care team, our educational intervention appeared to change patients’ perceptions of the advantages of SCD. Specifically, the educational intervention was associated with increased perception of advantages of SCD (statistically significant for freedom and control) and reduced perception that SCD has no advantages over in-centre dialysis.

We designed our educational intervention to incorporate a combination of predisposing interventions (written manuals and video) and an enabling intervention (small group session) in light of evidence from previous studies suggesting that isolated predisposing interventions are generally ineffective in changing behaviour, and that combinations of interventions are better than single interventions [18]. In our earlier publication, we noted that patients did not change their choice of dialysis modality after the predisposing intervention—but did so following the enabling intervention. This suggests that active learning, such as that takes place in a problem-solving small group session, is required to change dialysis modality selection, rather than passive learning that occurs in the multidisciplinary clinic or when additional information is provided in the form of reading materials or videos.

Study limitations
In this study we used dialysis modality that patients intended to select as our end point rather than the modality that they actually started. We felt this was justified as patients are typically free to choose their dialysis modality: there are no reproducible differences in patient survival between different dialysis modalities, or institutional policies restricting the use of dialysis modalities that would override patient autonomy [19]. This end point also has face validity given that choosing to make a behaviour change (preparation) precedes behaviour change (action) on the well-defined pathway of behaviour change [20]. In our previous paper, we reported that 9 of 10 patients who were on dialysis at the time of reporting actually started their intended dialysis modality [9].

Another limitation of our study is that we selected patients who had been referred to the progressive kidney disease clinic in advance of requiring dialysis. Consequently, we do not know if our intervention would be as successful in patients who start dialysis prior to attending such a clinic. Would the increased comorbidity in this group make them less likely to choose SCD [21]? Would they tend to stick to their starting modality, typically in-centre haemodialysis? It is obviously important to study the effectiveness of our educational intervention in this group of patients.

Relevance of this study to clinical practice
As nephrologists we try to provide the best possible education to patients with chronic kidney disease to help them make appropriate choices about RRT. Here we found that providing patients with additional education on the advantages of SCD increased the likelihood of patients selecting this type of dialysis. We believe there are two important components of our successful educational intervention—what patients learned and how they learned this. Patients who learned that SCD was associated with an enhanced feeling of freedom and control were more likely to choose SCD, but they only changed their dialysis choice following the active learning provided by the small group session.

For those interested in introducing a similar educational intervention at their own centre, we would recommend that they consider both the content and delivery of their educational material. Learning sufficient to produce a change in dialysis choice takes time and effort on the part of the multidisciplinary team. But we have come to realize that time spent educating patients, whether this relates to treatment of chronic kidney disease or other chronic conditions, is usually rewarded by improved health care outcomes and cost savings [22,23].



   Conclusion
Top
 Abstract
 Introduction
 Methods
 Results
 Discussion
 Conclusion
References
 
In our earlier publication, we reported that our educational intervention increased the proportion of patients who select SCD. In the study, using qualitative analysis we found that our educational intervention increased patients’ perceptions of the advantages of SCD and that these perceptions, in turn, were associated with choosing SCD. As SCD is at least cost saving compared to in-centre haemodialysis, we believe that the incorporation of effective educational intervention into pre-dialysis care is justified. Such interventions should stress the advantages of SCD most likely to be associated with patients choosing this dialysis modality, such as increased freedom and lifestyle preservation.



   Acknowledgments
 
B.M. is supported by a CIHR New Investigator Award. This research was supported by the Southern Alberta Renal Program.

Conflict of interest statement. None declared.



   References
Top
 Abstract
 Introduction
 Methods
 Results
 Discussion
 Conclusion
 References
 

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  7. United States Renal Data System. (2007) 2007 atlas of ESRD in the United States, United States Renal Data System.
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  9. Manns BJ, Taub K, Vanderstraeten C, et al. The impact of education on chronic kidney disease patients’ plan to initiate dialysis with self-care dialysis: a randomized trial. Kidney Int (2005) 68:1777–1783.[CrossRef][Web of Science][Medline]
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Received for publication: 17. 4.08
Accepted in revised form: 2. 6.08


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