Symptom prevalence of patients with fibrotic interstitial lung disease: A systematic literature review

© 2018 The Author(s). Background: Those affected by advanced fibrotic interstitial lung diseases have limited treatment options and in the terminal stages, the focus of care is on symptom management. However, quantitatively, little is known about symptom prevalence. We aimed to determine the prevalence of symptoms in Progressive Idiopathic Fibrotic Interstitial Lung Disease (PIF-ILD). Methods: Searches on eight electronic databases including MEDLINE for clinical studies between 1966 and 2015 where the target population was adults with PIF-ILD and for whom the prevalence of symptoms had been calculated. Results: A total of 4086 titles were screened for eligibility criteria; 23 studies were included for analysis. The highest prevalence was that for breathlessness (54-98%) and cough (59-100%) followed by heartburn (25-65%) and depression (10-49%). The heterogeneity of studies limited their comparability, but many of the symptoms present in patients with other end-stage disease were also seen in PIF-ILD. Conclusions: This is the first quantitative review of symptoms in people with Progressive Idiopathic Fibrotic Interstitial Lung Diseases. Symptoms are common, often multiple and have a comparable prevalence to those experienced in other advanced diseases. Quantification of these data provides valuable information to inform the allocation of resources

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

Variations in the cost of formal and informal health care for patients with advanced chronic disease and refractory breathlessness: A cross-sectional secondary analysis

Background: Refractory breathlessness in advanced chronic disease leads to high levels of disability, anxiety and social isolation. These result in high health-resource use, although this is not quantified. Aims: To measure the cost of care for patients with advanced disease and refractory breathlessness and to identify factors associated with high costs. Design: A cross-sectional secondary analysis of data from a randomised controlled trial. Setting/participants: Patients with advanced chronic disease and refractory breathlessness recruited from three National Health Service hospitals and via general practitioners in South London. Results: Of 105 patients recruited, the mean cost of formal care was 3253 pound (standard deviation 3652) pound for 3 months. The largest contributions to formal-care cost were hospital admissions (>60%), and palliative care contributed 250% to 1,507 pound (standard deviation 9911) pound. Increased patient disability resulting from breathlessness was associated with high cost (629 pound per unit increase in disability score;p = 0.006). Increased breathlessness on exertion and the presence of an informal carer were also significantly associated with high cost. Patients with chronic obstructive pulmonary disease tended to have higher healthcare costs than other patients. Conclusion: Informal carers contribute significantly to the care of patients with advanced disease and refractory breathlessness. Disability resulting from breathlessness is an important clinical cost driver. It is important for policy makers to support and acknowledge the contributions of informal carers. Further research is required to assess the clinical- and cost-effectiveness of palliative care interventions in reducing disability resulting from breathlessness in this patient group

Development and validation of a casemix classification to predict costs of specialist palliative care provision across inpatient hospice, hospital and community settings in the UK: a study protocol

Introduction Provision of palliative care is inequitable with wide variations across conditions and settings in the UK. Lack of a standard way to classify by case complexity is one of the principle obstacles to addressing this. We aim to develop and validate a casemix classification to support the prediction of costs of specialist palliative care provision.Methods and analysis Phase I: A cohort study to determine the variables and potential classes to be included in a casemix classification. Data are collected from clinicians in palliative care services across inpatient hospice, hospital and community settings on: patient demographics, potential complexity/casemix criteria and patient-level resource use. Cost predictors are derived using multivariate regression and then incorporated into a classification using classification and regression trees. Internal validation will be conducted by bootstrapping to quantify any optimism in the predictive performance (calibration and discrimination) of the developed classification. Phase II: A mixed-methods cohort study across settings for external validation of the classification developed in phase I. Patient and family caregiver data will be collected longitudinally on demographics, potential complexity/casemix criteria and patient-level resource use. This will be triangulated with data collected from clinicians on potential complexity/casemix criteria and patient-level resource use, and with qualitative interviews with patients and caregivers about care provision across difference settings. The classification will be refined on the basis of its performance in the validation data set.Ethics and dissemination The study has been approved by the National Health Service Health Research Authority Research Ethics Committee. The results are expected to be disseminated in 2018 through papers for publication in major palliative care journals; policy briefs for clinicians, commissioning leads and policy makers; and lay summaries for patients and public

Social and clinical determinants of preferences and their achievement at the end of life: Prospective cohort study of older adults receiving palliative care in three countries

© 2017 The Author(s). Background: Achieving choice is proposed as a quality marker. But little is known about what influences preferences especially among older adults. We aimed to determine and compare, across three countries, factors associated with preferences for place of death and treatment, and actual site of death. Methods: We recruited adults aged ≥65-years from hospital-based multiprofessional palliative care services in London, Dublin, New York, and followed them for >17 months. All services offered consultation on hospital wards, support for existing clinical teams, outpatient services and received funding from their National Health Service and/or relevant Insurance reimbursements. The New York service additionally had 10 inpatient beds. All worked with and referred patients to local hospices. Face-to-face interviews recorded most and least preferred place of death, treatment goal priorities, demographic and clinical information using validated questionnaires. Multivariable and multilevel analyses assessed associated factors. Results: One hundred and thirty eight older adults (64 London, 59 Dublin, 15 New York) were recruited, 110 died during follow-up. Home was the most preferred place of death (77/138, 56%) followed by inpatient palliative care/hospice units (22%). Hospital was least preferred (35/138, 25%), followed by nursing home (20%) and home (16%); hospice/palliative care unit was rarely least preferred (4%). Most respondents prioritised improving quality of life, either alone (54%), or equal with life extension (39%); few (3%) chose only life extension. There were no significant differences between countries. Main associates with home preference were: cancer diagnosis (OR 3.72, 95% CI 1.40-9.90) and living with someone (OR 2.19, 1.33-3.62). Adults with non-cancer diagnoses were more likely to prefer palliative care units (OR 2.39, 1.14-5.03). Conversely, functional independence (OR 1.05, 1.04-1.06) and valuing quality of life (OR 3.11, 2.89-3.36) were associated with dying at home. There was a mismatch between preferences and achievements - of 85 people who preferred home or a palliative care unit, 19 (25%) achieved their first preference. Conclusion: Although home is the most common first preference, it is polarising and for 16% it is the least preferred. Inpatient palliative care unit emerges as the second most preferred place, is rarely least preferred, and yet was often not achieved for those who wanted to die there. Factors affecting stated preferences and met preferences differ. Available services, notably community support and palliative care units, require expansion. Contrasting actual place of death with capacity for meeting patient and family needs may be a better quality indicator than simply 'achieved preferences'

Does the EQ-5D capture the concerns measured by the Palliative care Outcome Scale?:Mapping the Palliative care Outcome Scale onto the EQ-5D using statistical methods

Background: The main measure to generate utility data for economic evaluations is the EQ-5D, but no study has tested whether or how to map from palliative care measures to the EQ-5D. Aims: To assess the level of conceptual overlap between palliative outcomes and the EQ-5D, and the feasibility of mapping between them to obtain utilities for the Palliative care Outcome Scale. Design: A cross-sectional secondary analysis of data from three studies. Setting/participants: Patients receiving palliative care and bereaved relatives, recruited from three tertiary National Health Service hospitals in South London. Methods: The overlap between both measures was assessed using principal component analysis. The Palliative care Outcome Scale was mapped onto the EQ-5D using three regression models. Results: Spearman’s correlations between both instruments were low (mean rho = 0.11). The principal component analysis showed the Palliative care Outcome Scale is associated with only two EQ-5D dimensions (pain; and anxiety/depression). No Palliative care Outcome Scale items loaded onto the mobility, self-care and usual activities dimensions of the EQ-5D. The mapping models performed poorly at predicting utilities from Palliative care Outcome Scale data (mean absolute error &gt;0.3 and R2 &lt;0.10). Hence, none of the models can be recommended as acceptable for calculating utilities from Palliative care Outcome Scale responses. Conclusion: Differences between the Palliative care Outcome Scale and the EQ-5D do not undermine the qualities of either instrument when used for their own purposes. However, due to conceptual differences, the EQ-5D does not capture some of the concerns measured by the Palliative care Outcome Scale, and therefore, mapping onto the EQ-5D is unlikely to provide an appropriate basis for estimating utilities for conducting economic evaluations in palliative care studies. </jats:sec