Decisional Needs of People From Minority Ethnic Groups Around Living Donor Kidney Transplantation: A UK Healthcare Professionals' Perspective.

Despite improved patient and clinical outcomes, living donor kidney transplantation is underutilized in the United Kingdom, particularly among minority ethnic groups, compared to deceased donor kidney transplantation. This may in part be due to the way in which kidney services present information about treatment options. With a focus on ethnicity, semi structured interviews captured the views of 19 kidney healthcare professionals from two renal centres in West Yorkshire, about the decisional needs and context within which people with advanced kidney disease make transplant decisions. Data were analysed using thematic analysis. Themes were categorized into three groups: 1) Kidney healthcare professionals: language, cultural awareness, trusted personnel, and staff diversity, 2) Patient information resources: timing and setting of education and suitability of patient-facing information and, 3) People with advanced kidney disease: knowledge, risk perception, and cultural/religious beliefs. To our knowledge, this is the first study in the United Kingdom to investigate in depth, healthcare professionals' views on living donor kidney transplantation decision making. Six recommendations for service improvement/delivery to support decision making around living donor kidney transplantation among minority ethnic groups are described.

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.

An experimental community: the East India Company in London, 1600-1800.

The early East India Company (EIC) had a profound effect on London, filling the British capital with new things, ideas and people; altering its streets; and introducing exotic plants and animals. Company commodities - from saltpetre to tea to opium - were natural products and the EIC sought throughout the period to understand how to produce and control them. In doing so, the company amassed information, designed experiments and drew on the expertise of people in the settlements and of individuals and institutions in London. Frequent collaborators in London included the Royal Society and the Society of Apothecaries. Seeking success in the settlements and patronage in London, company servants amassed large amounts of data concerning natural objects and artificial practices. Throughout the seventeenth and eighteenth centuries, company scholars and their supporters in London sought to counter critiques of the EIC by demonstrating the utility to the nation of the objects and ideas they brought home. The EIC transformed itself several times between 1600 and 1800. Nonetheless, throughout the seventeenth and eighteenth centuries, its knowledge culture was characterized by reliance on informal networks that linked the settlements with one another and with London.

Choosing dialysis modality: decision making in a chronic illness context.

BACKGROUND: Patients with chronic kidney disease (CKD) are encouraged to make an informed decision about dialysis. Survival rates for dialysis are equivalent yet there is wide variation in peritoneal dialysis uptake in the adult UK population. It is unclear how much is attributable to variations in patients' preferences. Kidney function usually declines over months and years; few studies have addressed how a chronic illness context affects choice. This study describes patients' decision making about dialysis and understands how the experience of CKD is associated with treatment choice. METHOD: Survey employing interview methods explored 20 patients' views and experiences of making their dialysis choice. Data were analysed using thematic framework analysis to provide descriptive accounts of how patients experienced their illness and made treatment decisions. RESULTS: Patients talked about challenges of living with CKD. Patients were provided with lots of information about treatment options in different formats. Patients did not distinguish between different types of dialysis and/or have an in-depth knowledge about options. Patients did not talk about dialysis options as a choice but rather as a treatment they were going to have. CONCLUSION: Most patients perceived their choice as between 'dialysis' and 'no dialysis'. They did not perceive themselves to be making an active choice. Possibly, patients feel they do not need to engage with the decision until symptomatic. Despite lots of patient information, there were more opportunities to encounter positive information about haemodialysis. A more proactive approach is required to enable patients to engage fully with the dialysis treatment options.

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 information about living donor kidney transplantation across UK renal units: A critical review.

BACKGROUND: Patient information about living donor kidney transplantation is used to supplement conversations between health professionals, people with advanced kidney disease and potential kidney donors. It is not known if the information is designed to support decision-making about renal replacement options and if it helps people discuss living kidney donation with family and friends. OBJECTIVE: Critical review of resources used in outpatient kidney consultations to support patients' decision-making about living kidney donor transplantation. DESIGN: Mixed methods including an audit questionnaire and critical analysis of patient information leaflets. PARTICIPANTS AND MEASUREMENTS: All kidney transplant centres and renal units in United Kingdom received a questionnaire to elicit by whom, how, and when information about living kidney donation is delivered. Copies of leaflets were requested. A coding frame was utilised to produce a quality score for each leaflet. RESULTS: Thirty-nine (54%) units participated. Patients discussed living donor kidney transplantation with nephrologists (100%), living donor nurse (94%), transplant co-ordinator (94%), and predialysis nurse (86%). Twenty-three leaflets were provided and reviewed, mean quality scores for inclusion of information known to support shared decision-making was m = 2.82 out of 10 (range = 0-6, SD = 1.53). Readability scores indicated they were 'fairly difficult to read' (M = 56.3, range = 0-100, SD = 9.4). Few included cultural and faith information. Two leaflets were designed to facilitate conversations with others about donation. CONCLUSIONS: Leaflets are unlikely to adequately support decision-making between options and discussions about donation. Services writing and updating patient leaflets may benefit from our six principles to guide their development.

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.

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.

Outcomes and care priorities for older people living with frailty and advanced chronic kidney disease: a multiprofessional scoping review protocol.

INTRODUCTION: Reported outcomes for older people with advanced chronic kidney disease (CKD) often focus on survival and mortality and little attention is paid to symptom burden and health-related quality of life. Recognising frailty and providing interventions that may improve outcomes have been studied in the general population with a growing research interest within CKD. METHODS AND ANALYSIS: A scoping review will be undertaken following a recommended process to understand relevant research and priorities for older people living with frailty and advanced CKD. Databases will be searched and following a systematic process by a core team, a final list of included studies will be analysed. Focus groups will then be conducted with older people with advanced CKD to incorporate stakeholder views. ETHICS AND DISSEMINATION: Our scoping review will use robust methodology to identify relevant literature focused on outcomes and care priorities for older people with advanced CKD. Ethical approval will be sought to conduct the focus groups. The result of this review will be disseminated through patient networks and national conferences. The interdisciplinary team collaborating plan to continue work in this area to improve the care and management of older people with advanced CKD.

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.

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.

Does narrative information bias individual's decision making? A systematic review.

Including narratives in health-care interventions is increasingly popular. However, narrative information may bias individual's decision making, resulting in patients making poorer decisions. This systematic review synthesises the evidence about the persuasiveness of narrative information on individuals' decision making. Seventeen studies met the review criteria; 41% of studies employed first person narration, 59% third person. Narrative information influenced decision making more than the provision of no additional information and/or statistically based information in approximately a third of the studies (5/17); studies employing first person narratives were twice as likely to find an effect. There was some evidence that narrative information encouraged the use of heuristic rather than systematic processing. However, there was little consistency in the methods employed and the narratives' content to provide evidence on why narratives affect the decision process and outcome, whether narratives facilitate or bias decision making, and/or whether narratives affect the quality of the decision being made. Until evidence is provided on why and how narratives influence decision making, the use of narratives in interventions to facilitate medical decision making should be treated cautiously.

Dialysis modality selection: physician guided or patient led?

The process of choosing dialysis modality for patients is complex and requires input from the expert renal team. Although it is commonplace for nephrologists to recommend dialysis modalities to patients, this might not always lead to the patient receiving treatment which they regard as most suitable. Nephrologists should consider whether it is appropriate for pre-dialysis education to be directive, or whether the choice between treatment options should be led by the patient.

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.

Evaluating the quality of patient leaflets about renal replacement therapy across UK renal units.

BACKGROUND: Enhancing patient participation is a priority for renal services. Good quality information is fundamental to facilitate patient involvement, but in other health contexts it has been found to be sub-optimal. This research aims to audit the provision of patient information by renal units and charities and to assess the quality of written information about dialysis treatment options. METHODS: All UK renal units were sent a questionnaire about the patient information they provided. Renal units and charities that provided dialysis leaflets were asked to forward copies. Leaflet quality and content were assessed by a coding frame informed by information and decision aid checklists. RESULTS: Out of 105, 67 completed questionnaires were returned. Services provide patients with large amounts of information in several media (leaflets, meetings with nurses and patients, videos); computers were not used frequently. Out of 47, 32 units forwarded leaflets about dialysis, and 31 different leaflets. Most leaflets were difficult to understand and rarely included risk information or treatment limitations. No leaflets included techniques to assist patient involvement or decision-making; their primary goal was to inform. CONCLUSIONS: These data suggest an unsystematic pattern of information provision across the UK. Vast resources have been spent on providing information to patients that is difficult to comprehend and incomplete. Research needs to identify which resources are effective in meeting patient needs and at what point in their illness. A centralized system to guide renal services in the design and development of information resources may help meet the differing goals of education, choice facilitation and preparation for self-management.

Disabling musculoskeletal pain and its relation to somatization: a community-based postal survey.

BACKGROUND: Somatization (a tendency to report distress from somatic symptoms) is a little studied, but potentially important, confounder and effect modifier in occupational studies of musculoskeletal disease. AIMS: To assess the role of somatization as a risk factor for disabling regional pain. METHODS: A questionnaire was mailed to 4998 subjects of working age. Questions were asked about chronic and disabling pain in the past 12 months affecting the arm, low back, knee or combinations of these sites. Distress from physical symptoms was assessed using elements of the Brief Symptom Inventory and mental well-being was assessed using the short-form 36 (SF-36). Associations were examined by modified Cox regression and expressed as hazard ratios (HRs) with 95% confidence intervals (CI). RESULTS: Among 2632 responders, 24% reported chronic pain and 25% disabling pain at one or several sites. Risk of chronic or disabling pain increased strongly according to the number of somatic symptoms reported as bothersome. For example, the HR for chronic upper limb pain in those distressed by > or =2 somatic symptoms in the past 7 days versus none was 3.9 (95% CI 2.9-5.3), and that of disabling upper limb pain was 5.8 (95% CI 4.1-8.3). Similar patterns were found for the low back and knee, and there was a gradient of increasing risk according to the number of sites with disabling pain. In comparison, associations with SF-36 mental well-being score were weaker. CONCLUSION: Somatizing tendency should be evaluated as a possible confounder or effect modifier in studies of occupational risk factors for musculoskeletal pain.

Patients' experience of the diagnosis and treatment of skin cancer.

PURPOSE: This paper describes the experience of being diagnosed with skin cancer from the perspective of patients. BACKGROUND: Despite the number of people with newly-diagnosed skin cancer increasing each year, the psychological impact of receiving such a diagnosis has received little attention. Research in this area is sporadic and has predominantly focused on malignant melanoma and used a quantitative approach. METHOD: Sixteen patients were interviewed about their experiences of being diagnosed with malignant melanoma, basal cell carcinoma or squamous cell carcinoma. The interview transcripts were analysed using thematic content analysis. FINDINGS: Similar themes for the two non-melanoma forms of skin cancer patients emerged. Information and knowledge of skin cancer appeared as a key theme, and influenced experiences in a variety of different ways. Patients with malignant melanoma recounted similar experiences to those with basal cell carcinoma or squamous cell carcinoma. People with malignant melanoma, however, used a wider variety of strategies in order to cope with the diagnosis. Satisfaction with the care experienced by each of the three groups played a crucial role in minimizing the experience for the patients. CONCLUSIONS: Patients with skin cancer should not be conceived as a homogeneous group, but one in which there are a number of diagnoses which differ in prognosis, and so may result in a variety of different consequences and thus experiences for patients.