Psoriasis today: experiences of healthcare and impact on quality of life in a major UK cohort

Aim: To establish how people with psoriasis in the United Kingdom today experience living with their condition including diagnosis, treatment, healthcare provision and impact on daily life. Background: Psoriasis is a debilitating long-term inflammatory skin disease which can result in severe itching, discomfort and soreness, and may be associated with problems beyond the specific symptoms related to the skin. For many it is accompanied by difficult-to-manage treatment regimes, emotional distress and a negative impact on their quality of life and psychosocial functioning. To date there is little published information about the health experiences of people in the United Kingdom with psoriasis. Methods A postal self-administered questionnaire was completed by members of the Psoriasis Association and the responses analysed (n=1564). Findings The findings suggest some similarities to surveys in other nations, but specifically highlighted that patients feel under-informed and are dissatisfied with current treatment regimes. Responses provided an insight into aspects of the condition that treatments should be targeting. Specific areas of negative impact on psychosocial functioning were identified, including the lack of available support for those experiencing emotional distress. The research provides important information about how the care of patients with psoriasis can be improved, especially at primary care level. This includes: improved training in psoriasis knowledge and awareness at general practitioner level and greater use of dermatology specialist nurses in primary care settings; more effective and manageable treatment regimes that target visible areas and general well-being; greater support for emotional distress and psychosocial functioning.Peer reviewedFinal Accepted Versio

Individual and community socioeconomic status : impact on mental health in individuals with arthritis

Peer reviewedPublisher PD

The Effect of Acceptance Training on Psychological and Physical Health Outcomes in Elders with Chronic Conditions

This pilot trial investigated the short and long-term effects of Acceptance Training (ACT) intervention on acceptance, perceived health, functional status, anxiety, and depression in elders with chronic conditions living in retirement communities (RCs). The ACT intervention combined Rational Emotive Behavior Therapy with music, relaxation, and guided imagery during six weekly 2-hour sessions. Face-to-face interviews were conducted with 16 African-American and 46 White elders across four data collection points in six randomly selected RCs using well-established measures of perceived health, functional status, anxiety, and depression, and a measure of acceptance of chronic conditions adapted from a previous measure of acceptance of diabetes. While changes were found in perceived health, functional status, anxiety, and depression, the most significant changes occurred in the elders\u27 acceptance of chronic conditions immediately after the intervention (t = -2.62, P \u3c .02), and these changes persisted for 6 and 12 weeks (t\u27s = -2.74, -3.32, p\u27s \u3c .01), respectively. Although a 40% attrition rate reduced the sample size from 62 (N = 62) to 37 (N = 37), the significant increases in acceptance over time provide initial evidence for the fidelity of the ACT intervention

Measuring the burden of treatment for chronic disease: implications of a scoping review of the literature

Background: Although there has been growing research on the burden of treatment, the current state of evidence on measuring this concept is unknown. This scoping review aimed to provide an overview of the current state of knowledge as well as clear recommendations for future research, within the context of chronic disease. Methods: Four health-based databases, Scopus, CINAHL, Medline, and PsychInfo, were comprehensively searched for peer-reviewed articles published between the periods of 2000–2016. Titles and abstracts were independently read by two authors. All discrepancies between the authors were resolved by a third author. Data was extracted using a standardized proforma and a comparison analysis was used in order to explore the key treatment burden measures and categorize them into three groups. Results: Database searching identified 1458 potential papers. After removal of duplications, and irrelevant articles by title, 1102 abstracts remained. An additional 22 papers were added via snowball searching. In the end, 101 full papers were included in the review. A large number of the studies involved quantitative measures and conceptualizations of treatment burden (n = 64; 63.4%), and were conducted in North America (n = 49; 48.5%). There was significant variation in how the treatment burden experienced by those with chronic disease was operationalized and measured. Conclusion: Despite significant work, there is still much ground to cover to comprehensively measure treatment burden for chronic disease. Greater qualitative focus, more research with cultural and minority populations, a larger emphasis on longitudinal studies and the consideration of the potential effects of “identity” on treatment burden, should be considered

Enhancing the Australian National Health Survey Data for Use in a Microsimulation Model of Pharmaceutical Drug Usage and Cost

While static microsimulation models of the tax-transfer system are now available throughout the developed world, health microsimulation models are much rarer. This is, at least in part, due to the difficulties in creating adequate base micro-datasets upon which the microsimulation models can be constructed. In sharp contrast to tax-transfer modelling, no readily available microdata set typically contains all the health status, health service usage and socio-demographic information required for a sophisticated health microsimulation model. This paper describes three new techniques developed to overcome survey data limitations when constructing \'MediSim\', a microsimulation model of the Australian Pharmaceutical Benefits Scheme. Comparable statistical matching and data imputation techniques may be of relevance to other modellers, as they attempt to overcome similar data deficiencies. The 2001 national health survey (NHS) was the main data source for MediSim. However, the NHS has a number of limitations for use in a microsimulation model. To compensate for this, we statistically matched the NHS with another national survey to create synthetic families and get a complete record for every individual within each family. Further, we used complementary datasets to impute short term health conditions and prescribed drug usage for both short- and long-term health conditions. The application of statistical matching methods and use of complementary data sets significantly improved the usefulness of the NHS as a base dataset for MediSim.Base Data, Drug Usage, Microsimulation, Pharmaceutical Benefits, Scripts, Statistical Matching

The hereditary angioedema burden of illness study in Europe (HAE-BOIS-Europe) : background and methodology

Background: Hereditary angioedema (HAE) is a rare but serious disease marked by swelling attacks in the extremities, face, trunk, airway, or abdominal areas that can be spontaneous or the result of trauma and other triggers. It can be life-threatening due to the risk of asphyxiation. While there have been major advancements in our understanding of the immunogenetics of HAE, there are significant gaps in the literature regarding understanding of the humanistic and economic impact of the disease, particularly in Europe. The purpose of the HAE Burden of Illness Study-Europe (HAE-BOIS-Europe), the development and methodology of which is described here, is to better understand the management and impact of HAE from the patient perspective in Europe. Methods/Design: This is a cross-sectional study in which retrospective data were also collected being conducted in Denmark, Germany and Spain. The study is open to patients ages 12 and older with a diagnosis of HAE-I or HAE-II. Data collection includes: (i) a survey on individuals’ health care resource use, direct and indirect medical costs, impact on work and school, treatment satisfaction, and emotional functioning (via the Hospital Anxiety and Depression Scale); and (ii) one-on-one interviews to collect detailed descriptive data and patient testimonials on the impact of HAE on patients’ health-related quality of life. Discussion: The present manuscript describes the development and plans for implementing a multi-country European study with the aim of characterizing the humanistic and economic burden of HAE from the patient perspective. This study will help raise awareness of HAE as a rare but debilitating condition with wide-ranging impacts

Use of generic and condition-specific measures of health-related quality of life in NICE decision-making: systematic review, statistical modelling and survey.

© Queen’s Printer and Controller of HMSO 2014Background: The National Institute for Health and Care Excellence recommends the use of generic preference-based measures (GPBMs) of health for its Health Technology Assessments (HTAs). However, these data may not be available or appropriate for all health conditions. Objectives: To determine whether GPBMs are appropriate for some key conditions and to explore alternative methods of utility estimation when data from GPBMs are unavailable or inappropriate. Design: The project was conducted in three stages: (1) A systematic review of the psychometric properties of three commonly used GPBMs [EQ-5D, SF-6D and Health Utilities Index Mark 3 (HUI3)] in four broadly defined conditions: visual impairment, hearing impairment, cancer and skin conditions. (2) Potential modelling approaches to ‘map’ EQ-5D values from condition-specific and clinical measures of health [European Organisation for Research and Treatment of Cancer Quality-of-life Questionnaire Core 30 (EORTC QLQ-C30) and Functional Assessment of Cancer Therapy – General Scale (FACT-G)] are compared for predictive ability and goodness of fit using two separate data sets. (3) Three potential extensions to the EQ-5D are developed as ‘bolt-on’ items relating to hearing, tiredness and vision. They are valued using the time trade-off method. A second valuation study is conducted to fully value the EQ-5D with and without the vision bolt-on item in an additional sample of 300 people. Main outcome measures: Comparisons of EQ-5D, SF-6D and HUI3 in four conditions with various generic and condition-specific measures. Mapping functions were estimated between EORTC QLQ-C30 and FACT-G with EQ-5D. Three bolt-ons to the EQ-5D were developed: EQ + hearing/vision/tiredness. A full valuation study was conducted for the EQ + vision. Results: (1) EQ-5D was valid and responsive for skin conditions and most cancers; in vision, its performance varied according to aetiology; and performance was poor for hearing impairments. The HUI3 performed well for hearing and vision disorders. It also performed well in cancers although evidence was limited and there was no evidence in skin conditions. There were limited data for SF-6D in all four conditions and limited evidence on reliability of all instruments. (2) Mapping algorithms were estimated to predict EQ-5D values from alternative cancer-specific measures of health. Response mapping using all the domain scores was the best performing model for the EORTC QLQ-C30. In an exploratory analysis, a limited dependent variable mixture model performed better than an equivalent linear model. In the full analysis for the FACT-G, linear regression using ordinary least squares gave the best predictions followed by the tobit model. (3) The exploratory valuation study found that bolt-on items for vision, hearing and tiredness had a significant impact on values of the health states, but the direction and magnitude of differences depended on the severity of the health state. The vision bolt-on item had a statistically significant impact on EQ-5D health state values and a full valuation model was estimated. Conclusions: EQ-5D performs well in studies of cancer and skin conditions. Mapping techniques provide a solution to predict EQ-5D values where EQ-5D has not been administered. For conditions where EQ-5D was found to be inappropriate, including some vision disorders and for hearing, bolt-ons provide a promising solution. More primary research into the psychometric properties of the generic preference-based measures is required, particularly in cancer and for the assessment of reliability. Further research is needed for the development and valuation of bolt-ons to EQ-5D.UK Medical Research Council (MRC) as part of the MRC-NIHR methodology research programme (reference G0901486

Barnes Hospital Bulletin

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