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

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

Validation of the IPOS-Renal Symptom Survey in advanced kidney disease; a cross-sectional study

Context:The significant symptom burden in advanced renal disease is often poorly recognized by clinicians. Recently, the Integrated Palliative Outcome Score (IPOS) – Renal survey was developed from pre-existing tools to capture these symptoms and other common concerns. Objectives:We studied the validity and reliability of the IPOS-Renal survey (patient and staff versions) in an Australian population. Methods:Adult patients with advanced renal disease and nurses caring for them participated. We initially administered the IPOS-Renal survey simultaneously with other validated surveys, then re-tested the IPOS-Renal after 7-14 days. We tested the construct validity of (a) IPOS-Renal patient version in relation to the Edmonton Symptom Assessment Survey- revised and the KDQOL-SF v1.3 questionnaire; and (b) IPOS-Renal staff version in relation to the Support Team Assessment Schedule (STAS) survey. Results: 81 patients (65 haemodialysis, 10 peritoneal dialysis and 6 on supportive care; average age 64.9 years) and 53 nurses (average renal nursing experience 10.9 years) participated. Intra-class coefficients for test-retest reliability were >0.7 for most queries; Cronbach’s alpha for internal consistency was 0.84 (patient version) and 0.91 (staff version). In tests of construct validity, Spearman’s coefficient of correlation between surveys and their comparators for similar questions was significant, at 0.61 to 0.77 (patients) and 0.24 to 0.76 (staff). As expected, symptom scores and total symptom burden were negatively correlated with summary scores of quality of life. Conclusion:The IPOS-Renal surveys, patient and staff versions, have good test-retest reliability, internal consistency and construct validity in patients with advanced kidney disease and their nurses. We recommend their use in symptom assessment

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

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

Systematic review of pharmacological therapies for the management of ischaemic pain in patients with non-reconstructable critical limb ischaemia

Background Critical limb ischaemia (CLI) is a severe manifestation of peripheral arterial disease, characterised by chronic ischaemic rest pain, ulcers or gangrene. Management of ischaemic pain is challenging in patients with no options for revascularisation and optimal pharmacological therapies have not been established.Objectives To identify and evaluate the effectiveness of pharmacological therapies to treat ischaemic pain secondary to non-reconstructable CLI.Methods This systematic review was reported in accordance with PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guideline. Comprehensive searches of three electronic databases, a PubMed-related articles link search, grey literature search and hand-searches of the bibliographies of relevant papers and textbooks were performed. Studies recruiting adult patients with CLI of any aetiology were eligible for inclusion. Surgical and revascularisation procedures, and all invasive interventions were excluded.Results Of 792 studies, six met full inclusion criteria. These studies researched the use of intravenous lidocaine, intravenous ketamine, oral gabapentin and the combination of transdermal buprenorphine and epidural morphine/ropivacaine infusion. All studies showed an improvement in severity of ischaemic pain in CLI but with varying side effect profiles and quality. The extracted studies showed substantial heterogeneity and therefore a meta-analysis was not performed.Conclusion The pharmacological management of pain secondary to non-reconstructable CLI is a challenging review topic. No recommendations of pharmacological agents can be made following this review but a number of novel approaches to manage pain in this cohort have shown positive results and require further investigation

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

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

Measuring health-related quality of life in patients with conservatively managed stage 5 chronic kidney disease: limitations of the Medical Outcomes Study Short Form 36: SF-36

© 2016, The Author(s). Purpose: Chronic kidney disease (CKD) negatively affects health-related quality of life (HRQoL), which is often measured using the Medical Outcomes Study Short Form 36 (SF-36) questionnaire. However, the adequacy of SF-36 in this population has not been reported. We aimed to determine floor and ceiling effects and responsiveness to change of SF-36 in patients with conservatively managed stage 5 CKD. Methods: SF-36 data were collected prospectively. Floor and ceiling effects were estimated for each SF-36 scale and summary measure based on raw scores. The minimal clinically important difference (MCID) was estimated using a combination of anchor-based and distribution-based methods. Responsiveness to change was assessed by comparing MCID for each scale and summary measure to its smallest detectable change. Results: SF-36 data were available for 73 of the 74 study participants. Using baseline data, floor and/or ceiling effects were detected for 3 of the 8 SF-36 scales. The anchor-based estimation of MCID based on differences in baseline functional status yielded the most reliable results. For the physical component summary, MCID was estimated at 5.7 points. Whilst the two SF-36 summary measures were responsive to change and free of floor and/or ceiling effects, six of the eight scales were not. Conclusions: This small study of patients with conservatively managed stage 5 CKD found that only the summary measures of SF-36 and 2 of its 8 scales can be used to assess changes in HRQoL over time. These findings suggest that in this population, alternative HRQoL assessment tools should be considered for future studies

A systematic review of the effectiveness of palliative interventions to treat rectal tenesmus in cancer

Background:Rectal tenesmus is a distressing symptom in patients with advanced cancer and challenging to treat. There is lack of consensus on the appropriate management of tenesmus in this patient population.Aim:To identify and examine the effectiveness of interventions to palliate rectal tenesmus caused by advanced cancer when surgery, radiotherapy or chemotherapy are no longer treatment options.Design:A systematic review of the literature following standard systematic review methodology and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidance.Data sources:A comprehensive search of the electronic databases MEDLINE, EMBASE and the Cochrane Library was conducted from date of inception to April 2016. PubMed ‘related articles’ search, grey literature search and hand-searches of the bibliographies of relevant papers and textbooks were also performed. Non-cancer patients were excluded. Any studies involving surgery or radiotherapy to treat tenesmus were excluded. Studies involving interventions to treat pelvic pain syndromes without specific outcome measures on severity of tenesmus were excluded. The quality of the studies was assessed using a National Institute for Health and Clinical Excellence–recommended quality assessment tool.Results:From 861 studies, 9 met full criteria and were selected. All were case series investigating the use of pharmacological interventions (diltiazem, nifedipine, methadone, mexiletine hydrochloride, lidocaine and bupivacaine), anaesthetic interventions (lumbar sympathectomy, neurolytic superior hypogastric plexus block), and endoscopic laser interventions. The included studies showed substantial heterogeneity, and therefore, a meta-analysis was not feasible.Conclusion:From this review, we identified a significant gap in research into the palliation of rectal tenesmus. A multimodal approach may be necessary due to the complexity of the pathophysiology of tenesmus. Future research should focus on randomised controlled trials of drug therapies whose potential effectiveness is suggested by case series

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

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

Time to improve informed consent for dialysis: an international perspective

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