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.

Managing and treating chronic kidney disease.

Chronic kidney disease is a long-term condition that commonly exists with other conditions such as diabetes, hypertension and heart failure. The majority of people with CKD are managed in the community by a GP and community nursing team rather than a nephrologist. This article provides an overview of its stages, management and treatment.

Improving the quality of communication and service provision for renal patients of South Asian origin: the contribution of a cultural and health improvement officer.

A large number of patients with advanced chronic kidney disease in Bradford, UK are of South Asian origin. Effective delivery of care for these patients demands a consistently high standard of communication between patients, their families and renal unit staff. Communication may be problematic for a number of reasons, including language barriers and an incomplete appreciation of important cultural or religious beliefs. In 2010, we received charitable funding for an Ethnic Liaison Support Worker, renamed Cultural and Health Improvement Officer (CHIO). The CHIO is able to engage with and support patients, relatives and other members of the multidisciplinary renal team. Core responsibilities include ensuring that patients and their families feel at ease whenever they are in communication with the renal services team in Bradford; contributing to formal discussion and explanation of important clinical issues in the patient's first language (typically Urdu or Punjabi), thereby encouraging patients to feel more involved in decisions about their care; listening to ad hoc patient queries and concerns and addressing these directly or indirectly through timely involvement of other members of the renal team; cultivating a greater awareness of and empathy towards the holistic needs of patients and their families within the renal MDT; and strengthening the links between renal and social care services. The involvement of the CHIO is especially important when discussing sensitive and complex issues such as conservative and end-of-life care with patients and their families, as communication needs to be detailed, precise and unequivocal. This is crucial to providing a bespoke supportive service for our all patients, especially those who have opted for conservative management. The significant contribution of the CHIO to the quality of renal services in Bradford has been recognised and a permanent CHIO post has now been established.