Decision aids to assist patients and professionals in choosing the right treatment for kidney failure.

Background: Kidney services vary in the way they involve people with kidney failure (PwKF) in treatment decisions as management needs change. We discuss how decision-science applications support proactively PwKF to make informed decisions between treatment options with kidney professionals. Methods: A conceptual review of findings about decision making and use of decision aids in kidney services, synthesized with reference to: the Making Informed Decisions-Individually and Together (MIND-IT) multiple stakeholder decision makers framework; and the Medical Research Council-Complex Intervention Development and Evaluation research framework. Results: This schema represents the different types of decision aids that support PwKF and professional reasoning as they manage kidney disease individually and together; adjustments at micro, meso and macro levels supports integration in practice. Conclusion: Innovating services to meet clinical guidelines on enhancing shared decision making processes means enabling all stakeholders to use decision aids to meet their goals within kidney pathways at individual, service and organizational levels.

Kidney disease pathways, options and decisions: an environmental scan of international patient decision aids.

BACKGROUND: Conservative management is recognized as an acceptable treatment for people with worsening chronic kidney disease; however, patients consistently report they lack understanding about their changing disease state and feel unsupported in making shared decisions about future treatment. The purpose of this review was to critically evaluate patient decision aids (PtDAs) developed to support patient-professional shared decision-making between dialysis and conservative management treatment pathways. METHODS: We performed a systematic review of resources accessible in English using environmental scan methods. Data sources included online databases of research publications, repositories for clinical guidelines, research projects and PtDAs, international PtDA expert lists and reference lists from relevant publications. The resource selection was from 56 screened records; 17 PtDAs were included. A data extraction sheet was applied to all eligible resources, eliciting resource characteristics, decision architecture to boost/bias thinking, indicators of quality such as International Standards for Patient Decision Aids Standards checklist and engagement with health services. RESULTS: PtDAs were developed in five countries; eleven were publically available via the Internet. Treatment options described were dialysis (n = 17), conservative management (n = 9) and transplant (n = 5). Eight resources signposted conservative management as an option rather than an active choice. Ten different labels across 14 resources were used to name 'conservative management'. The readability of the resources was good. Six publications detail decision aid development and/or evaluation research. Using PtDAs improved treatment decision-making by patients. Only resources identified as PtDAs and available in English were included. CONCLUSIONS: PtDAs are used by some services to support patients choosing between dialysis options or end-of-life options. PtDAs developed to proactively support people making informed decisions between conservative management and dialysis treatments are likely to enable services to meet current best practice.

Critical review of leaflets about conservative management used in uk renal services.

BACKGROUND: Written information supplements nurse-led education about treatment options. It is unclear if this information enhances patients' reasoning about conservative management (CM) and renal replacement therapy decisions. AIM: This study describes a critical review of resources U.K. renal staff use when providing CM options to people with Established Kidney Disease (EKD) during usual pre-dialysis education. DESIGN: A survey using mixed methods identified and critically analysed leaflets about CM. PARTICIPANTS & MEASUREMENTS: All 72 renal units in the United Kingdom received an 11-item questionnaire to elicit how CM education is delivered, satisfaction and/or needs with patient resources and staff training. Copies of leaflets were requested. A coding frame was utilised to produce a quality score for each leaflet. RESULTS: Fifty-four (75%) units participated. Patients discuss CM with a nephrologist (98%) or nurse (100%). Eighteen leaflets were reviewed, mean scores were 8.44 out of 12 (range 5-12, SD = 2.49) for information presentation; 3.50 out of 6 (range 0-6, SD = 1.58) for inclusion of information known to support shared decision-making and 2.28 out of 6 (range 1-4, SD = 0.96) for presenting non-biased information. CONCLUSIONS: Nurses preferred communicating via face-to-face contact with patients and/or families because of the emotional consequences and complexity of planning treatment for the next stage of a person's worsening kidney disease. Conversations were supplemented with written information; 66% of which were produced locally. Staff perceived a need for using leaflets, and spend time and resources developing them to support their services. However, no leaflets included the components needed to help people reason about conservative care and renal replacement therapy options during EKD education consultations.

Patient Acceptability of the Yorkshire Dialysis Decision Aid (YoDDA) Booklet: A Prospective Non-Randomized Comparison Study Across 6 Predialysis Services.

UNLABELLED: ♦ BACKGROUND: Patients are satisfied with their kidney care but want more support in making dialysis choices. Predialysis leaflets vary across services, with few being sufficient to enable patients' informed decision making. We describe the acceptability of a patient decision aid and feasibility of evaluating its effectiveness within usual predialysis practice. ♦ METHODS: Prospective non-randomized comparison design, Usual Care or Usual Care Plus Yorkshire Dialysis Decision Aid Booklet (+YoDDA), in 6 referral centers (Yorkshire-Humber, UK) for patients with sustained deterioration of kidney function. Consenting (C) patients completed questionnaires after predialysis consultation (T1), and 6 weeks later (T2). Measures assessed YoDDA's utility to support patients' decisions and integration within usual care. ♦ RESULTS: Usual Care (n = 105) and +YoDDA (n = 84) participant characteristics were similar: male (62%), white (94%), age (mean = 62.6; standard deviation [SD] 14.4), kidney disease severity (glomerular filtration rate [eGFR] mean = 14.7; SD 3.7); decisional conflict was < 25; choice-preference for home versus hospital dialysis approximately 50:50. Patients valued receiving YoDDA, reading it on their own (96%), and sharing it with family (72%). The +YoDDA participants had higher scores for understanding kidney disease, reasoning about options, feeling in control, sharing their decision with family. Study engagement varied by center (estimated range 14 - 49%; mean 45%); participants varied in completion of decision quality measures. ♦ CONCLUSIONS: Receiving YoDDA as part of predialysis education was valued and useful to patients with worsening kidney disease. Integrating YoDDA actively within predialysis programs will meet clinical guidelines and patient need to support dialysis decision making in the context of patients' lifestyle.

Do personal stories make patient decision aids more effective? A critical review of theory and evidence.

BACKGROUND: Patient decision aids support people to make informed decisions between healthcare options. Personal stories provide illustrative examples of others' experiences and are seen as a useful way to communicate information about health and illness. Evidence indicates that providing information within personal stories affects the judgments and values people have, and the choices they make, differentially from facts presented in non-narrative prose. It is unclear if including narrative communications within patient decision aids enhances their effectiveness to support people to make informed decisions. METHODS: A survey of primary empirical research employing a systematic review method investigated the effect of patient decision aids with or without a personal story on people's healthcare judgements and decisions. Searches were carried out between 2005-2012 of electronic databases (Medline, PsycINFO), and reference lists of identified articles, review articles, and key authors. A narrative analysis described and synthesised findings. RESULTS: Of 734 citations identified, 11 were included describing 13 studies. All studies found participants' judgments and/or decisions differed depending on whether or not their decision aid included a patient story. Knowledge was equally facilitated when the decision aids with and without stories had similar information content. Story-enhanced aids may help people recall information over time and/or their motivation to engage with health information. Personal stories affected both "system 1" (e.g., less counterfactual reasoning, more emotional reactions and perceptions) and "system 2" (e.g., more perceived deliberative decision making, more stable evaluations over time) decision-making strategies. Findings exploring associations with narrative communications, decision quality measures, and different levels of literacy and numeracy were mixed. The pattern of findings was similar for both experimental and real-world studies. CONCLUSIONS: There is insufficient evidence that adding personal stories to decision aids increases their effectiveness to support people's informed decision making. More rigorous research is required to elicit evidence about the type of personal story that a) encourages people to make more reasoned decisions, b) discourages people from making choices based on another's values, and c) motivates people equally to engage with healthcare resources.

Patient stories about their dialysis experience biases others' choices regardless of doctor's advice: an experimental study.

BACKGROUND: Renal services provide resources to support patients in making informed choices about their dialysis modality. Many encourage new patients to talk with those already experiencing dialysis. It is unclear if these stories help or hinder patients' decisions, and few studies have been conducted into their effects. We present two studies comparing the impact of patient and doctor stories on hypothetical dialysis modality choices among an experimental population. METHODS: In total, 1694 participants viewed online information about haemodialysis and continuous cycling peritoneal dialysis and completed a questionnaire. In Study 1, using actors, treatment information was varied by presenter (Doctor, Patient), order of presenter (Patient first, Doctor first) and mode of delivery (written, video). Information in Study 2 was varied (using actors) by presenter (Doctor, Patient), order of presenter (Patient first, Doctor first), inclusion of a decision table (no table, before story, after story) and sex of the 'patient' (male, female) and 'Doctor' (male, female). Information was controlled to ensure comparable content and comprehensibility. RESULTS: In both studies, participants were more likely to choose the dialysis modality presented by the patient rather than that presented by the doctor. There was no effect for mode of delivery (video versus written) or inclusion of a decision table. CONCLUSIONS: As 'new' patients were making choices based on past patient experience of those already on dialysis, we recommend caution to services using patient stories about dialysis to support those new to the dialysis in delivering support to those who are new to the decision making process for dialysis modality.

A randomised controlled trial of patient led training in medical education: protocol.

BACKGROUND: Estimates suggest that approximately 1 in 10 patients admitted to hospital experience an adverse event resulting in harm. Methods to improve patient safety have concentrated on developing safer systems of care and promoting changes in professional behaviour. There is a growing international interest in the development of interventions that promote the role of patients preventing error, but limited evidence of effectiveness of such interventions. The present study aims to undertake a randomised controlled trial of patient-led teaching of junior doctors about patient safety. METHODS/DESIGN: A randomised cluster controlled trial will be conducted. The intervention will be incorporated into the mandatory training of junior doctors training programme on patient safety. The study will be conducted in the Yorkshire and Humber region in the North of England. Patients who have experienced a safety incident in the NHS will be recruited. Patients will be identified through National Patient Safety Champions and local Trust contacts. Patients will receive training and be supported to talk to small groups of trainees about their experiences. The primary aim of the patient-led teaching module is to increase the awareness of patient safety issues amongst doctors, allow reflection on their own attitudes towards safety and promote an optimal culture among the doctors to improve safety in practice. A mixture of qualitative and quantitative methods will be used to evaluate the impact of the intervention, using the Attitudes to Patient Safety Questionnaire (APSQ) as our primary quantitative outcome, as well as focus groups and semi-structured interviews. DISCUSSION: The research team face a number of challenges in developing the intervention, including integrating a new method of teaching into an existing curriculum, facilitating effective patient involvement and identifying suitable outcome measures. TRIAL REGISTRATION: Current controlled Trials: ISRCTN94241579.