Exploring the choices and outcomes of older patients with advanced kidney disease.

A lack of data on patient choices and outcomes at the time of pre-dialysis planning limits meaningful shared decision making, particularly in older frailer patients. In this large retrospective cohort study of patients aged over 70 seen by the pre-dialysis clinic (2004-2016) of a large single centre in the United Kingdom (1,216 patients), age, sex, comorbidity, poverty and frailty were used to predict choice of renal replacement therapy (RRT) over maximum conservative management (MCM). The impact of patient choice of RRT versus MCM was used to predict survival from the time of choice using multivariable Cox proportional hazards regression. Older age, female sex, greater poverty and greater frailty were associated with choosing MCM, whilst comorbidity had no significant impact on choice. At 5 years of follow up, 49% of all patients had died without receiving RRT. Over 70% of the patients choosing MCM died with better kidney function than the median level at which those starting RRT initiated treatment. Frailty and age were better predictors of survival than comorbidity and in patients with at least moderate frailty, RRT offered no survival benefit over MCM. In conclusion, analysing outcomes from the time of choice may improve shared decision making. Frailty should be routinely assessed and collected and further work may help predict which patients are unlikely to survive or progress to end stage renal disease and may not need to be burdened with making a pre-dialysis choice.

Ability of observer and self-report measures to capture shared decision-making in clinical practice in the UK: a mixed-methods study.

OBJECTIVES: To examine how observer and self-report measures of shared decision-making (SDM) evaluate the decision-making activities that patients and clinicians undertake in routine consultations. DESIGN: Multi-method study using observational and self-reported measures of SDM and qualitative analysis. SETTING: Breast care and predialysis teams who had already implemented SDM. PARTICIPANTS: Breast care consultants, clinical nurse specialists and patients who were making decisions about treatment for early-stage breast cancer. Predialysis clinical nurse specialists and patients who needed to make dialysis treatment decisions. METHODS: Consultations were audio recorded, transcribed and thematically analysed. SDM was measured using Observer OPTION-5 and a dyadic SureScore self-reported measure. RESULTS: Twenty-two breast and 21 renal consultations were analysed. SureScore indicated that clinicians and patients felt SDM was occurring, but scores showed ceiling effects for most participants, making differentiation difficult. There was mismatch between SureScore and OPTION-5 score data, the latter showing that each consultation lacked at least some elements of SDM. Highest scoring items using OPTION-5 were 'incorporating patient preferences into decisions' for the breast team (mean 18.5, range 12.5-20, SD 2.39) and 'eliciting patient preferences to options' for the renal team (mean 16.15, range 10-20, SD 3.48). Thematic analysis identified that the SDM encounter is difficult to measure because decision-making is often distributed across encounters and time, with multiple people, it is contextually adapted and can involve multiple decisions. CONCLUSIONS: Self-reported measures can broadly indicate satisfaction with SDM, but do not tell us about the quality of the interaction and are unlikely to capture the multi-staged nature of the SDM process. Observational measures provide an indication of the extent to which elements of SDM are present in the observed consultation, but cannot explain why some elements might not be present or scored lower. Findings are important when considering measuring SDM in practice.

A descriptive model of shared decision making derived from routine implementation in clinical practice ('Implement-SDM'): Qualitative study.

OBJECTIVE: Research is needed to understand how Shared Decision-Making (SDM) is enacted in routine clinical settings. We aimed to 1) describe the process of SDM between clinicians and patients; 2) examine how well the SDM process compares to a prescriptive model of SDM, and 3) propose a descriptive model based on observed SDM in routine practice. METHODS: Patients with chronic kidney disease and early stage breast cancer were recruited consecutively via Cardiff and Vale University Health Board (UK) teams. Consultations were audio-recorded, transcribed and thematically analysed. RESULTS: Seventy-six consultations were observed: 26 pre-dialysis consultations and two consultations each for 25 breast cancer patients. Key stages of the 'Three Talk Model' were observed. However, we also observed more elements and greater complexity: a distinct preparation phase; tailored and evolving integrative option conversation; patients and clinicians developing 'informed preferences'; distributed and multi-stage decisions; and a more open-ended planning discussion. Use of decision aids was limited. CONCLUSION: A more complex picture was observed compared with previous portrayals in current theoretical models. PRACTICE IIMPLICATIONS: The model can provide a basis for future training and initiatives to promote SDM, and tackle the gap between what is advocated in policy, but rarely achieved in practice.

Frailty and comorbidity are independent predictors of outcome in patients referred for pre-dialysis education.

BACKGROUND: The incidence of chronic kidney disease (CKD) is rising and is likely to continue to do so for the foreseeable future, with the fastest growth seen among adults ≥75 years of age. Elderly patients with advanced CKD are likely to have a higher burden of comorbidity and frailty, both of which may influence their disease outcome. For these patients, treatment decisions can be complex, with the current lack of robust prognostic tools hindering the shared decision-making process. The current study aims to assess the impact of comorbidity and frailty on the outcomes of patients referred for pre-dialysis education. METHODS: We performed a single-centre study of patients (n = 283) referred for pre-dialysis education between 2010 and 2012. The Charlson Comorbidity Index (CCI) and Clinical Frailty Scale (CFS) were used to assess comorbid disease burden and frailty, respectively. Follow-up data were collected until February 2015. RESULTS: The CCI and CFS scores at the time of referral to the pre-dialysis service were independent predictors of mortality. Within the study follow-up period, 76% of patients with a high CFS score at the time of pre-dialysis education had died, with 63% of these patients not commencing dialysis before death. CONCLUSION: A relatively simple frailty scale and comorbidity score could be used to predict survival and better inform the shared decision-making process for patients with advanced kidney disease.