Medidas de resultados auto relatadas por doentes renais crónicos: análise de indicadores de experiência da doença crónica

There is often a discrepancy between clinical data, including laboratory tests, and the patients’ experience of being ill. The goal of this work was to search for Key Performance Indicators (KPI) of disease other than the usual numeric data. As research model, we have used Chronic Kidney Disease (CKD). Those indicators should express the experience of living with the disease and be sensible to medical decisions so that they can be targeted for intervention. In chapter 2, a contextualization of CKD is made, presenting an extensive list of the standard indicators that currently drive physicians’ decisions. A general approach to chronic diseases is presented in chapter 3, highlighting models of interventions. Some existing indicators are also covered. The experimental work is presented in chapter 4. Our hypothesis was based on a conceptual model which postulated that a given Patient Reported Outcome Measure (PROM) would be suitable for daily use in the clinical context provided that it would link predictors (demographic variables, comorbidity indices, estimates of Glomerular Filtration Rate – eGFR - and untoward events of the previous year) to Endpoints (death, dialysis, hospitalizations and emergency episodes) with statistically significant relationships and serve as indicator as surrogate of well-being. We conducted an observational study and recruited 60 patients with CKD to whom several questionnaires of PROM were administered: Short Physical Performance Battery (SPPB), World Health Organization Disability Assessment Schedule (WHODAS), Satisfaction With Life Scale (SWLS) and Kidney Disease Quality of Life (KDQoL). Follow-up period was 24 months. Lastly, we wanted to know the relevancy of the endpoints to the patients. For that, they were asked to rank six endpoints according to what they think their physician’s priority should be (avoid death, avoid dialysis, avoid worsening of lab tests, prevent further deterioration of medical condition, avoid hospital admissions and avoid emergency episodes). We conclude that: 1) SPPB could predict death, dialysis and hospital admissions. 2) WHODAS could predict death and dialysis. 3) Physical Functioning domain of KDQoL could predict death and hospital admissions. 4) Role Emotional domain of KDQoL could predict death. 5) Energy/Vitality domain of KDQoL could predict hospital admissions. 6) Role Physical domain of KDQoL could predict dialysis. 7) Mental Health domain of KDQoL could predict hospital admissions and emergency episodes. 8) Pain, Social Function and General Health domains of KDQoL, and SWLS were not useful in predicting any of the proposed endpoints. 9) The Cockcroft-Gault (CG) formula to compute eGFR is the only that could predict mortality. 10) All eGFR formulae predicted beginning of dialysis. 11) Only the CG formula could predict the scores of some PROM scales: SPPB, Physical Function domain of KDQoL and WHODAS. 12) Both the Charlson comorbidity scales (1987 and 2011) are useful for the prediction of studied endpoints: the first predicts death and hospital admissions while the second predicted mortality, dialysis, hospitalizations and emergency episodes. 13) The highest priority of patients is that their physician’s main concern should be to “Avoid death” whereas options “Avoid dialysis” and “Avoid worsening of laboratory tests” came next, in a tie. 14) Patients ranked “Avoid hospitalization” and “Avoid emergency episodes” in the last places, after all the others. Finally, 15) Eight possible schemes were drawn from the analysis of the conceptual model. Four of them have shown to have clinical utility. Longitudinal exploration of these PROM is needed in order to reinforce their clear place at office and bedside and in disease management.Há frequentemente uma discrepância entre os dados clínicos, incluindo análises laboratoriais, e a experiência de se estar doente. O objetivo deste trabalho foi procurar indicadores-chave de desempenho de doença para além dos dados numéricos habituais. Como modelo de investigação, utilizamos a Doença Renal Crónica (DRC). Esses indicadores devem traduzir a experiência de viver com a doença e serem sensíveis às decisões médicas, para que possam ser alvo de intervenção. No capítulo 2, é feita uma contextualização da DRC, apresentando-se uma extensa lista dos indicadores que actualmente orientam as decisões dos médicos. No capítulo 3, faz-se uma abordagem geral das doenças crónicas, destacando modelos de gestão da doença crónica. Alguns indicadores actualmente usados também são referidos. O trabalho experimental é apresentado no capítulo 4. A nossa hipótese baseou-se num modelo conceptual que postulava que uma determinada medida de resultados autorelatados pelos doentes (PROM: Patient Reported Outcome Measures) seria adequada para uso diário em contexto clínico se tivesse uma correlação estatisticamente significativa entre os preditores (variáveis demográficas, índices de comorbilidade, estimativas de Taxa de Filtração Glomerular - TFGe - e eventos adversos do ano anterior) e os resultados (morte, diálise, hospitalizações e idas ao serviço de urgência), servindo assim como indicador de bem-estar. Realizámos um estudo observacional, tendo recrutado 60 doentes renais crónicos que responderam a vários questionários de PROM: “Short Physical Performance Battery” (SPPB), “World Health Organization Disability Assessment Schedule” (WHODAS), “Satisfaction With Life Scale” (SWLS) e “Kidney Disease Quality of Life” (KDQoL). O período de acompanhamento foi de 24 meses. Finalmente, estudámos a relevância dos resultados para os doentes. Para isso, foi-lhes pedido que classificassem seis desfechos, de acordo com o que acham que deveria ser a prioridade do seu médico (“evitar a morte”, “evitar a diálise”, “evitar o agravamento dos exames laboratoriais”, “evitar a deterioração do seu estado geral”, “evitar internamentos hospitalares” e “evitar idas ao serviço de urgência”). Os resultados permitiram concluir que: 1) O SPPB previu morte, diálise e hospitalizações. 2) O WHODAS previu morte e diálise. 3) O domínio Função Física do KDQoL previu morte e hospitalizações. 4) O domínio Saúde Mental do KDQoL previu morte. 5) O domínio Energia/vitalidade do KDQoL previu hospitalizações. 6) O domínio físico do KDQoL previu diálise. 7) Domínio de Saúde Mental do KDQoL previu hospitalizações e idas ao serviço de urgência. 8) Os domínios Dor, Função Social e Saúde Geral do KDQoL, bem como o SWLS não foram úteis na previsão de nenhum dos resultados propostos. 9) A fórmula de Cockcroft-Gault (CG) para calcular a TFGe é a única que previu a morte. 10) Todas as fórmulas de cálculo da TFGe previram o início da diálise. 11) Apenas a fórmula de CG pôde prever a pontuação de algumas escalas do PROM: SPPB, domínio da Função Física do KDQoL e WHODAS. 12) Ambas as escalas de comorbilidade de Charlson (de 1987 e 2011) são úteis para a predição dos resultados estudados: a primeira prevê mortes e internamentos hospitalares, enquanto a segunda prediz morte, diálise, hospitalizações e idas ao serviço de urgência. 13) A principal prioridade dos doentes é que a principal preocupação do seu médico seja “evitar a morte”, enquanto as opções “evitar diálise” e “evitar o agravamento dos exames laboratoriais” vêm a seguir, empatadas. 14) Os doentes classificaram as opções “evitar hospitalização” e “evitar episódios de urgência” nos últimos lugares, depois de todas as demais. Finalmente, 15) O modelo conceptual proposto permitiu identificar oito possibilidades diferentes de relação entre preditores, PROM e resultados. Quatro deles mostraram ter utilidade clínica. São necessários estudos longitudinais com PROM para reforçar o seu papel no consultório e na enfermaria, e também na gestão da doença.Programa Doutoral em Ciências e Tecnologias da Saúd

End-of-life priorities of older adults with terminal illness and caregivers: A qualitative consultation

Abstract Background As older adults approach the end‐of‐life (EOL), many are faced with complex decisions including whether to use medical advances to prolong life. Limited information exists on the priorities of older adults at the EOL. Objective This study aimed to explore patient and family experiences and identify factors deemed important to quality EOL care. Method A descriptive qualitative study involving three focus group discussions (n = 18) and six in‐depth interviews with older adults suffering from either a terminal condition and/or caregivers were conducted in NSW, Australia. Data were analysed thematically. Results Seven major themes were identified as follows: quality as a priority, sense of control, life on hold, need for health system support, being at home, talking about death and competent and caring health professionals. An underpinning priority throughout the seven themes was knowing and adhering to patient's wishes. Conclusion Our study highlights that to better adhere to EOL patient's wishes a reorganization of care needs is required. The readiness of the health system to cater for this expectation is questionable as real choices may not be available in acute hospital settings. With an ageing population, a reorganization of care which influences the way we manage terminal patients is required

Advance care planning for patients with end-stage kidney disease on dialysis: narrative review of the current evidence, and future considerations

Patients with end-stage kidney disease (ESKD) have a high symptom-burden and high rates of morbidity and mortality. Despite this, evidence has shown that this patient group does not have timely discussions to plan for deterioration and death, and at the end of life there are unmet palliative care needs. Advance care planning is a process that can help patients share their personal values and preferences for their future care and prepare for declining health. Earlier, more integrated and holistic advance care planning has the potential to improve access to care services, communication, and preparedness for future decision-making and changing circumstances. However, there are many barriers to successful implementation of advance care planning in this population. In this narrative review we discuss the current evidence for advance care planning in patients on dialysis, the data around the barriers to advance care planning implementation, and interventions that have been trialled. The review explores whether the concepts and approaches to advance care planning in this population need to be updated to encompass current and future care. It suggests that a shift from a problem-orientated approach to a goal-orientated approach may lead to better engagement, with more patient-centred and satisfying outcomes

How does uncertainty shape patient experience in advanced illness? A secondary analysis of qualitative data.

BACKGROUND: Uncertainty is common in advanced illness but is infrequently studied in this context. If poorly addressed, uncertainty can lead to adverse patient outcomes. AIM: We aimed to understand patient experiences of uncertainty in advanced illness and develop a typology of patients' responses and preferences to inform practice. DESIGN: Secondary analysis of qualitative interview transcripts. Studies were assessed for inclusion and interviews were sampled using maximum-variation sampling. Analysis used a thematic approach with 10% of coding cross-checked to enhance reliability. SETTING/PARTICIPANTS: Qualitative interviews from six studies including patients with heart failure, chronic obstructive pulmonary disease, renal disease, cancer and liver failure. RESULTS: A total of 30 transcripts were analysed. Median age was 75 (range, 43-95), 12 patients were women. The impact of uncertainty was frequently discussed: the main related themes were engagement with illness, information needs, patient priorities and the period of time that patients mainly focused their attention on (temporal focus). A typology of patient responses to uncertainty was developed from these themes. CONCLUSION: Uncertainty influences patient experience in advanced illness through affecting patients' information needs, preferences and future priorities for care. Our typology aids understanding of how patients with advanced illness respond to uncertainty. Assessment of these three factors may be a useful starting point to guide clinical assessment and shared decision making.Simon Noah Etkind is funded as an Academic Clinical Fellow by the National Institute for Health Research. This article presents independent research funded by the National Institute for Health Research (NIHR) under the Programme Grants for Applied Research programme (RP-PG-1210-12015 – C-CHANGE: Delivering high quality and cost-effective care across the range of complexity for those with advanced conditions in the last year of life). Further information is available at http://www.csi.kcl.ac.uk/c-change1.html. The views and opinions expressed by authors in this publication are those of the authors and do not necessarily reflect those of the NHS, the NIHR, MRC, CCF, NETSCC, the NIHR Programme Grants for Applied Research or the Department of Health

Chronic illness care for Aboriginal and Torres Strait Islander people: final report

This project engage a range of stakeholders across different levels of the primary health care system, including service providers, management, policy-makers and researchers and capture their knowledge on the barriers and enablers to addressing the identified priority-evidence practice gaps and their suggestions on strategies for improvement. Overview The purpose of this project is to engage key stakeholders in the use of aggregate continuous quality improvement (CQI) data to identify and address system-wide evidence-practice gaps in Aboriginal and Torres Strait Islander chronic illness care. We aimed to engage a range of stakeholders across different levels of the primary health care (PHC) system, including service providers, management, policy-makers and researchers and capture their knowledge on the barriers and enablers to addressing the identified priority-evidence practice gaps and their suggestions on strategies for improvement. Our research has highlighted the wide variation in performance between different aspects of care and between health centres. While many aspects of care are being done well in many health centres, there are important gaps between evidence and practice in some aspects of PHC. System-wide gaps are likely to be due to deficiencies in the broader (PHC) system, indicating that system-level action is required to improve performance. Such system-level action should be developed with a deep understanding of the holistic nature of Aboriginal and Torres Strait islander wellbeing beyond just physical health (including healthy connections to culture, community and country), of the impact of Australian colonist history on Aboriginal and Torres Strait Islander people, and of how social systems – including the health system - should be shaped to meet the needs of Aboriginal and Torres Strait Islander people. This project aims to build on the collective strengths within PHC services in order to continue improving the quality of care for Aboriginal and Torres Strait Islander communities

Ethical challenges in nephrology : a call for action

The American Society of Nephrology, the European Renal Association-European Dialysis and Transplant Association and the International Society of Nephrology Joint Working Group on Ethical Issues in Nephrology have identified ten broad areas of ethical concern as priority challenges that require collaborative action. Here, we describe these challenges - equity in access to kidney failure care, avoiding futile dialysis, reducing dialysis costs, shared decision-making in kidney failure care, living donor risk evaluation and decision-making, priority setting in kidney disease prevention and care, the ethical implications of genetic kidney diseases, responsible advocacy for kidney health and management of conflicts of interest - with the aim of highlighting the need for ethical analysis of specific issues, as well as for the development of tools and training to support clinicians who treat patients with kidney disease in practising ethically and contributing to ethical policy-making. Here, the ASN-ERA-EDTA-ISN Joint Working Group on Ethical Issues in Nephrology highlights ten areas of ethical concern as priority challenges that require collaborative action and discusses the need for development of ethical training and guidance tools to manage these issues

Spending Health Care Dollars Wisely: Can Cost-Effectiveness Analysis Help? 16th Annual Herbert Lourie Memorial Lecture on Health Policy

Are we getting the most health improvement possible for our money. In other words, are all the things that we do in medicine really worth it? That is where cost-effectiveness comes in. As a nation, we have been unwilling, at least publicly, to look explicitly at the value, in terms of improved health outcome, that we get for our health care dollars. With advances in medical technology putting unsustainable pressure on health care costs, our historical reluctance to measure value for health care may have to change. I start this brief by describing cost-effectiveness analysis as a method of determining the value, measured in Quality-Adjusted Life Years, of medical technologies as they are applied to treat, diagnose, or prevent various conditions. Based on this information, I then argue that some highly beneficial, low-cost procedures are significantly underutilized, and that other medical technologies may be overutilized based on the amount of health benefit they yield in relation to their cost. Next, I give examples from current research, my own and that of colleagues, illustrating how cost-effectiveness analysis can be used to guide the use of new diagnostic testing technologies (such as DNA or RNA typing of infectious agents or identification of genomic or proteinomic markers in cancer patients).

Micro-meso-macro practice tensions in using patient-reported outcome and experience measures in hospital palliative care

This article applies a micro-meso-macro analytical framework to understand clinicians’ experiences and perspectives of using patient-reported outcome and experience measures (PROMs and PREMs) in routine hospital-based palliative care. We structure our discussion through qualitative analysis of a design and implementation project for using an electronic tablet-based tool among hospital-based palliative clinicians to assess patients’ and their family caregivers’ quality of life concerns and experiences of care. Our analysis identified three categories of practice tensions shaping clinicians’ use of PROMs and PREMs in routine care: tensions surrounding implementation, tensions in standardization and quantification, and tensions that arose from scope of practice concerns. Our findings highlight that clinicians necessarily work within the confluence of multiple system priorities, that navigating these priorities can result in irreducible practice tensions, and that awareness of these tensions is a critical consideration when integrating PROMs and PREMs into routine practice