QUALITY IMPROVEMENT

‘MY KIDNEYS, MY CHOICE, DECISION AID’: SUPPORTING SHARED DECISION MAKING Debbie Fortnum1, Tatiana Smolonogov2, Rachael Walker3, Luke Kairaitis4, Debbie Pugh5 Kidney Health Australia, Perth, Western Australia, Australia 2 Department of Nephrology, Westmead Hospital, Sydney, New South Wales, Australia 3 Department of Nephrology, Hawke’s Bay District Health Board, Hawkes Bay, New Zealand 4 School of Medicine, University of Western Sydney, Sydney, New South Wales, Australia 5 Department of Nephrology, Prince of Wales Hospital, Sydney, New South Wales, Australia

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Fortnum D., Smolonogov T., Walker R., Kairaitis L., Pugh D. (2015). ‘My kidneys, my choice, decision aid’: Supporting shared decision making. Journal of Renal Care 41(2), 81–87.

SUMMARY Background: For patients with chronic kidney disease (CKD) who are progressing to end-stage kidney disease (ESKD) a decision of whether to undertake dialysis or conservative care is a critical component of the patient journey. Shared decision making for complex decisions such as this could be enhanced by a decision aid, a practice which is well utilised in other disciplines but limited for nephrology. Methods: A multidisciplinary team in Australia and New Zealand (ANZ) utilised current decision-making theory and best practice to develop the ‘My Kidneys, My Choice’, a decision aid for the treatment of kidney disease. Results: A patient-centred, five-sectioned tool is now complete and freely available to all ANZ units to support the ESKD education and shared decision-making process. Distribution and education have occurred across ANZ and evaluation of the decision aid in practice is in the first phase. Conclusions: Development of a new tool such as an ESKD decision aid requires vision, multidisciplinary input and ongoing implementation resources. This tool is being integrated into ANZ, ESKD education practice and is promoting the philosophy of shared decision making.

K E Y W O R D S Decision aid  Dialysis  End-stage kidney disease  Education  Shared decision making

INTRODUCTION Chronic kidney disease (CKD) is estimated to affect up to 10% of the population, with approximately 110 per million population commencing treatment for end-stage kidney disease (ESKD) in Australia per annum (McDonald et al. 2012). As people progress

BIODATA Debbie Fortnum is a nurse with qualifications in nephrology nursing and special interest in chronic kidney disease, patient education, decision-making and home dialysis. Affiliation: the Renal Society of Australasia. Currently works with Kidney Health Australia as a national project manager to improve the outcomes of those in Australia affected by kidney disease. CORRESPONDENCE

Debbie Fortnum, 22 Townshend Rd, Subiaco, Perth 6008, Western Australia, Australia Tel.: þ61 8 6160 9502 Fax: þ61 8 6160 9599 Email: [email protected]

to ESKD they are deemed ‘pre-dialysis’, a phase in which the key aim is to adequately educate and prepare them for renal replacement therapy (RRT). RRT includes dialysis and transplantation but many patients opt only for conservative management. Around the world utilisation rates of treatment types depend upon many factors, including the key focus of the individual health care system, availability of funds or financial priorities, availability of treatment options and physician preferences. ANZ is privileged to have a system that can offer treatment choices to all who have ESKD. It has high rates of home dialysis by world standards but option type prevalence varies considerably by jurisdiction (Agar et al. 2010). International renal guidelines recommend all patients and caregivers are educated adequately in order to make an informed decision (Key 2008; NICE guidelines 2013; Wheeler & Becker 2013). CARI (Caring for Australians with Renal Impairment) guidelines highlight that decision making for RRT is important because best outcomes are attained with the appropriate treatment choice (Kelly et al. 2012). However, over the last decade for other areas of healthcare it is the more advanced philosophy of shared decision making that has become gold standard.

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Shared decision making is defined as the health professional as the clinical expert, guiding the patient and their significant other with their life expertise, through the process of decision making (Barry & Edgman-Levitan 2012). Shared decision making also requires health professionals to be educated in supporting this process (Le´gare´ et al. 2010; Legare et al. 2013). Shared decision making is often supported by decision aids which, in the United Kingdom, have been classified as either options grids, brief decision aids (highlighting each option with the advantages and disadvantages of each), or comprehensive education and decision-making tools (NHS England 2014).

evaluating current leaflets and interviews on how people make decisions (Winterbottom et al. 2012). No ESKD decision aids had completed formal evaluation by 2012.

It is accepted that formalising education and decision-making processes can reduce the potential risk of clinician/provider bias, inequalities, regional differences, unspecified levels of education and substandard process. Good pre-dialysis care thereby improves the transition during ESKD to RRT (Mannes et al. 2005; Morton et al. 2010; Goovaerts et al. 2012). However, in 2010 a Kidney Health Australia consumer perspectives survey found that 49% of prevalent dialysis patients reported that they were not provided with a choice about their current modality of dialysis and up to 31%, varied by age and support, wanted to change modality from centre-based to home dialysis. It also strongly suggested that the education and decision-making processes they experienced were not always comprehensive (Ludlow et al. 2012).

DEVELOPMENT METHOD In 2012, a joint ANZ committee was convened to develop a decision-making tool. An unrestricted educational grant was provided to the committee, which included senior renal nurses, nephrologists, social workers and consumer representatives from ANZ who were selected by the appointed committee chair. The group was supported by a company team of psychologists who specialised in decision-making theory and tool development. The committee/working party had three faceto-face meetings at one-month intervals and also used electronic media and phone contact for final content review. The primary project goal was to support the philosophy of structured shared decision making for those engaging in, and those health professionals supporting, RRT treatment decisions. The secondary goal was to promote comprehensive treatment option education fulfilling the principles of informed choice.

Subsequent surveys of educational practices in ANZ renal units during 2012 found a wide variance in ESKD education practice with rural and home modalities being disadvantaged. Decreased time spent on education and group education significantly correlated with decreased rates of home dialysis and no formal decision-making tools were being used (Fortnum et al. 2014). Nurses in ANZ providing treatment option education also reported being increasingly time poor and compromising time to educate patients to a sufficient standard (Walker & Marshall 2014). In Murray et al. (2009), in a world-wide systematic review of decision making for those with ESKD yielded zero primary articles of research, found poor practice and recommended the need for research in this area. In 2012, our search only found literature or information regarding three relevant ESKD decision aids: an online Canadian tool (Healthwise Staff 2011), a paperbased decision aid from Yorkshire (YoDDA) in the United Kingdom (Bekker et al. 2012), and the American Match-D tool (Home Dialysis Central 2012). YoDDA had been developed after

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The inconsistencies in education practices coupled with evidence of patients not being involved in shared decision making indicated an opportunity for improved practice in ANZ. This paper considers the development process, distribution and early evaluation of the ANZ decision aid as a tool to support delivery of shared decision-making practice by health professionals, for those with ESKD.

A structured process was determined to guide development of the tool. It included concept development, engagement of relevant stakeholders, international literature review, structured brainstorming, document development and critical review. Review of the international patient decision aid standards collaboration (IPDAS) guidelines for decision aid development was part of this process (Elwyn et al. 2009). THE ‘MY KIDNEYS MY CHOICE’ DECISION AID The first and current version of ‘My Kidneys, My Choice’ decision aid for ESKD was completed in November 2012 (Figure 1) (Kidney Health Australia, 2012). The inaugural decision aid is in English and aimed to meet the recommended literacy grade of year 6–7 (Cotugna et al. 2005). Acknowledging that the title of the decision aid would guide and inspire the underlying content was a strong committee

© 2014 European Dialysis and Transplant Nurses Association/European Renal Care Association

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Section title My Kidneys

My Lifestyle

My Options

My Choice

My Questions

Recommended completion strategy Discuss ‘why here’ at the first education appointment—adult learning (Deliberation talk—awareness of need to make a decision) Complete during first appointment or take home (Deliberation/Choice talk—acknowledge lifestyle impacts on options and learn about choices) Use concurrent to the education process. It may be used to start discussions about treatment options and also to recap about treatment options (Choice/Option talk) Complete either at home or at a follow-up education appointment (Decision talk—seek opinions and make shared decisions) A space for patient to note their questions and bring them back to subsequent appointments

Table 1: Decision aid sections.

Figure 1: The ‘My Kidneys, My Choice’ Decision Aid front cover.

consensus that it is the individual’s life and their treatment. ‘My Kidneys, My Choice; a decision aid for those with end-stage kidney disease’ was determined to be both personally appealing and adequately descriptive. The patient-centred recurrent theme of ‘my’ continues throughout the document. The internal structure was based on the acknowledged principles of shared decision-making processes (Elwyn et al. 2012). The decision aid was split into five clear sections (Table 1). ‘My Kidneys’ is the introductory point where adult learning principles are applied. This was to ensure that the health professional established that the individual was aware of their diagnosis and mentally prepared for education and timely decision making (deliberation talk). ‘My Lifestyle’ (Figure 2) aims to enhance the process of shared decision making by prioritising the value of the patient lifestyle in education discussions. Open-ended questions were designed to evoke thoughts about the person’s lifestyle, personal priorities, current psychological position and their preferences related to control of treatment. Final questions consider what fears and expectations the person has as they move into a future with treatment for ESKD.

‘My Options’ provides the key points of difference between treatment options in a table format covering nine identified lifestyle priorities. The first option grid highlights key points related to transplantation, dialysis and conservative care. The second options grid is a more detailed comparison of the three home dialysis options (automated or continuous ambulatory peritoneal dialysis and home HD) and centre-based HD. The options grids enhance informed decision making (choice and options talk). ‘My Choice’ is designed to cross-check the positioning of the person in relation to their readiness to make a decision, to recentralise them in the shared decision-making process and to clarify that they have understood their options correctly (decision talk). ‘My Questions’ is a very simple open page for the jotting down of questions at any stage. For initial publication a paper-based format, which could be readily printed, written on and brought to appointments, was determined to be the most practical option, suiting the broadest audience. Electronic media was rejected as the primary format due to the nature of the patient demographic with ESKD (poorer socio-economic status and high percentage of elderly), acknowledging that a successful paper-based tool could be the template for electronic/app-based use later. HEALTH PROFESSIONAL GUIDE In recognition of the critical need for related health professional education Kidney Health Australia (KHA) developed a ‘Guide for Health Professionals’. The guide provides decision-making

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HEALTH PROFESSIONAL UPTAKE Nephrologists, nurses and allied health are all demonstrating positive interest with 100%, of 100 health professionals who have attended KHA, ESKD education workshops reporting that they will either use or recommend the decision aid. To date in New Zealand 55% of units are using the decision aid regularly and 18% are planning future use (Walker 2014). An Australian online survey in December 2013 sought feedback from those health professionals both using and alternatively aware of, but not yet using the decision aid. 25 health professionals had used the decision aid on average 11 times (SD 7.7). On a score of 1 (no help) to 4 (very helpful) the mean scores were; ‘supporting the understanding of options’: 3.24 (SD 0.72); ‘assisting understanding of the patients’ priorities’: 3.04 (SD 0.83); and for ‘supporting decision making’: 3.17 (SD 0.72). 33 responses by those not using the decision aid showed 100% intended to use it once barriers such as local practice limitations were overcome. In addition to the intended primarily English-speaking audience the decision aid was also being used in indigenous health-care settings and with non-English-speaking clients in the presence of interpreters.

Figure 2: Section 2 My lifestyle.

theory and education regarding practical application of the decision aid whilst acknowledging that educational processes differ considerably between Australia and New Zealand. A hardwearing printed version of both the decision aid and the guide was made available to support education of health professionals and to be a reference copy. DISTRIBUTION AND EDUCATION National distribution commenced throughout ANZ in June 2013. For daily use a downloadable PDF version of the decision aid is hosted on the KHA and New Zealand (KHNZ) websites (KHA, 2013). In Australia a KHA national project funded by the Commonwealth government to improve RRT education has managed the education, dissemination and research. Education was provided to over 2000 ANZ health professionals by December 2013. Multiple strategies included teleconferences, webinar, website distribution, state workshops, unit visits, conference presentations and email. The second phase workshops in 2014 will focus on shared decision making.

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CONSUMER EVALUATION Early indications by all consumers are positive with many returning to appointments with written sections completed. It is the formal evaluation which is estimated to be completed at the end of 2014, which will better inform of consumer acceptance. The preliminary consumer research is a multisite prospective quasi-experimental design with a one-group pretest/post-test. Each question offers options on a 5-point ordinal scale. Questions target knowledge, fears and decision-making experience. Four sites are enrolled with a total target cohort of 100 patients over 12 months. Extended qualitative analysis on decision-making experience will target 20 of these patients.

DISCUSSION Decision aid validation from the recent Cochrane review demonstrates an increase in patients selecting an option related to their values (RR 1.51, 95% CI 1.17–1.96) and less decision making passivity (RR 0.66, 95% CI, 0.53–0.81) as well as lower decisional conflict and increased knowledge levels (Stacey et al. 2014). YoDDA is currently undergoing evaluation in practice

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through a decision science experiment on how to present information, qualitative interviews on its content, a before-andafter study of its acceptability to patients and a web-based study. To date, 106 patients using YoDDA showed significant improvement in decision-making clarity and patient understanding of options (Winterbottom et al. 2013). Current decision aid formats vary widely including paper-based, on-line, educationally inclusive, or not and interactive, or not. The advantage of a combined educational approach is that one tool can be used for the entire educational process, but the downside is that this creates a larger and ‘one size fits all’ education tool, which the ANZ committee considered limiting for our broad and varied target audience. ANZ is very multicultural with many different languages spoken by those receiving treatment for ESKD. Socio-economic status also varies widely, so ensuring the tool was health literate and easy to use was also of high importance within the development group. Positively detailed educational supplement to improve informed decision making is provided by the numerous education tools already available on the ANZ market with current gaps being addressed by the KHA national ESKD education project. Therefore, to simplify content it was decided that the decision aid would focus on the gap in the ESKD education pathway where practice change was desired—the shared decision-making process and centralising of the patient’s lifestyle within treatment option discussions. The YoDDA decision aid contrasts in that it is both a guide to decision making and a comprehensive educational tool. Other concepts are similar though in that its’ purpose is to provide a patient decision aid that is generic, evidence-based, value-free and with balanced information written to help people’s reasoning about why treatment options may (not) fit into their lifestyles (Bekker et al. 2012). A recently published American decision aid also incorporates a comprehensive 159-page education handbook and a video focusing on key lifestyle concerns (Ameling et al. 2012). This educational package included comprehensive consultation during development leading to high literacy ratings by consumers but the length incurred constructive criticism. A 14-page mini-booklet has since been developed. It is yet to be validated for decision-making values. The inclusion of conservative non-dialysis options stimulated robust discussion in ANZ, related to whether inclusion of this

option removed hope for all. Literature concludes that conservative care outcomes are known to be comparable to dialysis for those who are elderly and have multiple co-morbidities, approximately 50% of those with stage 5 kidney disease never start treatment, 20% of those who withdraw later do it voluntarily and dialysis is a huge treatment burden (Renal Physicians Association 2010; McDonald et al. 2012). Conservative care is therefore included and health professionals are provided with key communication points to facilitate discussion about this option. Budget limitations meant that the working group size was restricted, although review of the final documents was made available to a wider group. Consumers were consulted briefly in early development and at the final document evaluation to determine understanding and suitability. The current consumer study will determine whether more consumer input would have been beneficial. Positively whilst the decision aid may have erred on the side of limited input the small focused group was able to complete a preliminary tool in a timely manner. An important step for introduction of this decision aid into practice has been the education of health professionals. Integrating all steps of shared decision making into education practice was considered paramount in ensuring collaborative practice. Literature reviews suggest that health professional or organisational resistance is a key barrier to shared decision making that is still poorly understood (Elwyn et al. 2013). Implementation of this decision aid has found little change resistance but has uncovered lack of understanding of shared decision making and many hidden costs for the entire process of development and distribution of a new tool. Legare et al. (2013) discuss the need for frameworks including relational competencies and risk communication competencies for health professionals practising shared decision making. This highlights theory to consider in future educational developments. IMPLICATIONS FOR CLINICAL PRACTICE The primary drivers of choice for those with ESKD are lifestyle concerns which can explain why those who enter a comprehensive education programme are also more likely to choose a home modality (Mehotra et al. 2005; Oliver et al. 2010). Morton et al. (2011) and Wyld et al. (2012) provided depth to the understanding of the personal priorities of those with ESKD during the decision-making process also finding that they and their care-givers prefer to have treatment at home. The decision aid focus on choosing treatment based on the lifestyle of the

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person may increase home dialysis selection, a current Australian health-care strategy. The decision aid has been presented at national and international conferences and world-wide interest has been generated with many overseas enquiries. In January 2014 adaptations into a digital format commenced, which once complete will then also be convertible to a phone app. The digital version will also be translated into other languages by countries requesting the digital version and first translations are likely to be in Asia. In addition, the digital version will allow a direct link to an online survey to continue consumer evaluation. The paper-based version is also available for translation as funds or opportunities arise.

decision aid. Kidney Health Australia receives funds for the ‘ESKD education project’ via the Commonwealth Chronic Disease Prevention and Improvement Flexible Fund. This funding supports distribution, education and research regarding the decision aid.

ACKNOWLEDGEMENTS The authors would like to acknowledge the steering committee for development of the decision aid: Tanya Smolonogov (chair—CNC), Assoc Prof. Lukas Kairaitis, Beena Sewlal (social worker), Debbie Pugh (CN), Debbie Fortnum (KHA), Dr Tim Spicer, Rachael Walker (NP), Carmel Gregan-Ford (KHNZ), Dr Rachael Morton (PhD). Thank you also to all of those who kindly gave their time to review the decision aid.

This decision aid has the potential to restructure the education and decision-making processes for those with ESKD, leading to shared decision making. However, it will be their opinions and outcomes which will be the critical factor for acceptance of the decision aid into standard education policies. Validation and ongoing research are strongly recommended.

CONFLICT OF INTEREST

CONCLUSION

SUMMARY

Effective decision making when faced with a life-threatening diagnosis such as ESKD is critical if best outcomes are to be realised. Shared decision making is the way forward and ANZ now has the ‘My Kidneys, My Choice’ decision-making tool which has the potential to improve decision-making practice. The decision aid has been designed for those with an ESKD diagnosis as a support for the RRT education and decisionmaking process. Wide distribution has been achieved and early acceptance is high. Consumer evaluations are currently underway. Changing practice to incorporate this tool and utilisation of the underpinning theory of shared-decision making will require continuous education and support for health professionals.

Shared decision making for complex decisions is the gold standard for decision making in healthcare. This paper discusses the development and early implementation into practice of the Australian and New Zealand ‘My Kidneys, My Choice’ decision aid.

FUNDING Baxter Healthcare provided an unrestricted educational grant to a steering committee to support the meetings and the specialist psychologist team associated with the development of the

Lukas Kairaitis has received consultancy fees and/or travel grants from Baxter Healthcare, Amgen Australia and Roche Australia. Debbie Fortnum, Tatiana Smolonogov, Lukas Kairaitis, Rachael Walker and Debbie Pugh have received an honorarium from Baxter Healthcare.

AUTHOR CONTRIBUTIONS DF: Project leader, participated in design and coordination, analysed the data, prepared the manuscript. TS: Principal project leader, participated in design and coordination, helped to draft manuscript and approved final manuscript. RW: Participated in design and coordination, helped to draft manuscript, read and approved the final manuscript. LK: Participated in design and coordination, helped to draft manuscript, read and approved the final manuscript. DP: Participated in design and coordination, helped to draft manuscript, read and approved the final manuscript.

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'My kidneys, my choice, decision aid': supporting shared decision making.

For patients with chronic kidney disease (CKD) who are progressing to end-stage kidney disease (ESKD) a decision of whether to undertake dialysis or c...
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