106 research outputs found

    Development of a patient-reported palliative care-specific health classification system: the POS-E

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    BackgroundGeneric preference-based measures are commonly used to estimate quality-adjusted life-years (QALYs) to inform resource-allocation decisions. However, concerns have been raised that generic measures may be inappropriate in palliative care.ObjectiveOur objective was to derive a health-state classification system that is amenable to valuation from the ten-item Palliative Care Outcome Scale (POS), a widely used patient-reported outcome measure in palliative care.MethodsThe dimensional structure of the original POS was assessed using factor analysis. Item performance was assessed, using Rasch analysis and psychometric criteria, to enable the selection of items that represent the dimensions covered by the POS. Data from six studies of patients receiving palliative care were combined (N = 1011) and randomly split into two halves for development and validation. Analysis was undertaken on the development data, and results were validated by repeating the analysis with the validation dataset.ResultsFollowing Rasch and factor analyses, a classification system of seven items was derived. Each item had two to three levels. Rasch threshold map helped identify a set of 14 plausible health states that can be used for the valuation of the instrument to derive a preference-based index.ConclusionCombining factor analysis and Rasch analysis with psychometric criteria provides a valid method of constructing a classification system for a palliative care-specific preference-based measure. The next stage is to obtain preference weights so the measure can be used in economic evaluations in palliative care

    Patient and health care professional decision-making to commence and withdraw from renal dialysis: A systematic review of qualitative research

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    Background and objectives. To ensure decisions to start and stop dialysis in end stage kidney disease are shared, the factors that affect patients and healthcare professionals in making such decisions need to be understood. This systematic review aims to explore how and why different factors mediate the choices about dialysis treatment. Design, setting, participants, and measurements. Medline, Embase, CINAHL and PsychINFO were searched for qualitative studies of factors that affect patients’ and/or healthcare professionals’ decisions to commence or withdraw from dialysis. A thematic synthesis was conducted. Results. Of 494 articles screened, 12 studies (conducted: 1985-2014) were included. These involved 206 predominantly haemodialysis patients and 64 healthcare professionals (age range: patients 26-93; professionals 26-61 years). (i) Commencing dialysis: patients based their choice on ‘gut-instinct’ as well as deliberating the impact of treatment on quality-of-life and survival. How individuals coped with decision-making was influential, some tried to take control of the problem of progressive renal failure, whilst others focussed on controlling their emotions. Healthcare professionals weighed-up biomedical factors and were led by an instinct to prolong life. Both patients and healthcare professionals described feeling powerless. (ii) Dialysis withdrawal: Only after prolonged periods of time on dialysis, were the realities of life on dialysis fully appreciated and past choice questioned. By this stage however patients were physically treatment dependent. Similar to commencing dialysis, individuals coped with treatment withdrawal in a problem or emotion-controlling way. Families struggled to differentiate choosing versus allowing death. Healthcare teams avoided and queried discussions regarding dialysis withdrawal. Patients however missed the dialogue they experienced during pre-dialysis education. Conclusions. Decision-making in end stage kidney disease is complex, dynamic, and evolves over time and towards death. The factors at work are multi-faceted and operate differently for patients and health professionals. More training and research on open-communication and shared decision-making is needed

    Understanding and addressing symptoms for those with kidney failure managed conservatively, without dialysis:considerations and models of care

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    For those who have kidney failure and are managed conservatively without dialysis, symptoms are often prevalent, multiple, and troublesome. They interfere with quality of life, reduce wellbeing, and can affect family carers too. Symptoms can sometimes be difficult to manage, and-for professionals-they are often hard to assess and not always amenable to management with medications appropriate for use in kidney failure. Fatigue is one of the most common symptoms; alongside a general overview of symptoms in this population, we include a more detailed discussion of this often-neglected symptom. The solutions to the main symptoms experienced by those with kidney failure managed conservatively without dialysis lie in detailed assessment and monitoring of symptoms, working as a multi-disciplinary team to the maximum to draw on the full range of skills and expertise, and use of non-pharmacological, as well as pharmacological, approaches. Both nephrology and palliative care skills and expertise are important to optimise the recognition, assessment, and management of symptoms. There are few published descriptions of models of conservative kidney management (CKM) or supportive kidney care and there is a lack of evidence to suggest which model is most effective. We therefore consider the evidence on optimal models of CKM and make suggestions for best practice

    Primary palliative care in Japan: needs estimation and projections – national database study with international comparisons

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    Objectives We aimed to estimate the potential population that requires palliative care, clarify the relationship between this population and the rate of ageing in Japan, and compare these trends with those of other countries.Design We used the national death registration data and population projections for Japan to estimate the population in need of palliative care using the minimal estimate method developed by Murtagh et al. Linear regression was used to create a model of mortality using sex, age at intervals of 5 years, and each major disease classification. We calculated the future population in need of palliative care until 2040 and compared the ageing data to those of other countries.Setting/participants All adults in Japan who died from 1980 to 2040 at intervals of 5 years.Results The number of people who might need palliative care from 2020 to 2040 will also increase linearly from 1 059 000 to 1 405 000. The proportion of Alzheimer’s, dementia and senility of the total need for palliative care will increase to 43.4% in 2040. The correlation coefficient between the proportion of the population in need of palliative care and the rate of ageing was 0.24 in developed countries.Conclusion In Japan, the population requiring palliative care in 2040 will be 1.5 times that in 2015. Palliative care needs to be provided urgently for people with Alzheimer’s disease, dementia and senility. The proportion of patients in need of palliative care may not change, although the number of patients requiring such gradually increases in developed countries

    The Prepare for Kidney Care Study:prepare for renal dialysis vs responsive management in advanced chronic kidney disease

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    Shared decision making in advanced chronic kidney disease requires unbiased information on survival and person-centred outcomes known to matter to patients: quality of life, symptom burden and support from family and healthcare professionals. To date, when deciding between dialysis and conservative care, patients have had to rely on evidence from small observational studies. Clinicians recognise that like is not being compared with like in these studies and interpret the results differently. Further, support differs considerably between renal units. What patients choose therefore depends on which renal unit they attend. To address this, a programme of work has been underway in the UK. After reports on survival and symptoms from a small number of renal units, a national, mixed-methods study – conservative kidney management: assessing practice patterns – mapped out conservative care practices and attitudes in the UK. This led to the Prepare for Kidney Care study, a randomised controlled trial comparing preparation for dialysis versus preparation for conservative care. Although powered to detect a positivist 0.345 difference in quality adjusted life years between the two treatments, this trial also takes a realist approach with a range of person-centred secondary outcomes and embedded qualitative research. To understand generalisability it is nested in an observational cohort study, which is nested in a chronic kidney disease registry. Challenges to recruitment and retention have been rapidly identified and addressed using an established embedded mixed methods approach - the QuinteT recruitment intervention. This review considers the background to and progress with recruitment to the trial

    Palliative care for children and young people with stage 5 chronic kidney disease

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    Death from stage 5 chronic kidney disease (CKD 5) in childhood or adolescence is rare, but something that all paediatric renal physicians and most paediatricians will encounter. In this paper, we present the literature on three key areas of palliative care practice essential to good clinical management: shared decision-making, advance care planning, and symptom management, with particular reference to CKD 5 where kidney transplant is not an option and where a decision has been made to withdraw or withhold dialysis. Some areas of care, particularly with regard to symptom management, have not been well-studied in children and young people (CYP) with CKD 5 and recommendations with regard to drug choice and dose modification are based on adult literature, known pharmacokinetics, and clinical experience

    Time to improve informed consent for dialysis: an international perspective

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    The literature reveals that current nephrology practice in obtaining informed consent for dialysis falls short of ethical and legal requirements. Meeting these requirements represents a significant challenge, especially because the benefits and risks of dialysis have shifted significantly with the growing number of older, comorbid patients. The importance of informed consent for dialysis is heightened by several concerns, including: (1) the proportion of predialysis patients and patients on dialysis who lack capacity in decision making and (2) whether older, comorbid, and frail patients understand their poor prognosis and the full implications to their independence and functional status of being on dialysis. This article outlines the ethical and legal requirements for a valid informed consent to dialysis: (1) the patient was competent, (2) the consent was made voluntarily, and (3) the patient was given sufficient information in an understandable manner to make the decision. It then considers the application of these requirements to practice across different countries. In the process of informed consent, the law requires a discussion by the physician of the material risks associated with dialysis and alternative options. We argue that, legally and ethically, this discussion should include both the anticipated trajectory of the illness and the effect on the life of the patient with particular regard to the outcomes most important to the individual. In addition, a discussion should occur about the option of a conservative, nondialysis pathway. These requirements ensure that the ethical principle of respect for patient autonomy is honored in the context of dialysis. Nephrologists need to be open to, comfortable with, and skillful in communicating this information. From these clear, open, ethically, and legally valid consent discussions, a significant dividend will hopefully flow for patients, families, and nephrologists alike

    Funding models in palliative care: lessons from international experience

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    Background:Funding models influence provision and development of palliative care services. As palliative care integrates into mainstream health care provision, opportunities to develop funding mechanisms arise. However, little has been reported on what funding models exist or how we can learn from them.Aim:To assess national models and methods for financing and reimbursing palliative care.Design:Initial literature scoping yielded limited evidence on the subject as national policy documents are difficult to identify, access and interpret. We undertook expert consultations to appraise national models of palliative care financing in England, Germany, Hungary, Republic of Ireland, New Zealand, The Netherlands, Norway, Poland, Spain, Sweden, Switzerland, the United States and Wales. These represent different levels of service development and a variety of funding mechanisms.Results:Funding mechanisms reflect country-specific context and local variations in care provision. Patterns emerging include the following:Provider payment is rarely linked to population need and often perpetuates existing inequitable patterns in service provision.Funding is frequently characterised as a mixed system of charitable, public and private payers.The basis on which providers are paid for services rarely reflects individual care input or patient needs.Conclusion:Funding mechanisms need to be well understood and used with caution to ensure best practice and minimise perverse incentives. Before we can conduct cross-national comparisons of costs and impact of palliative care, we need to understand the funding and policy context for palliative care in each country of interest
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