EQ-5D-3L Derived Population Norms for Health Related Quality of Life in Sri Lanka

Background Health Related Quality of Life (HRQoL) is an important outcome measure in health economic evaluation that guides health resource allocations. Population norms for HRQoL are an essential ingredient in health economics and in the evaluation of population health. The aim of this study was to produce EQ-5D-3L-derived population norms for Sri Lanka. Method A population sample (n =  780) was selected from four districts of Sri Lanka. A stratified cluster sampling approach with probability proportionate to size was employed. Twenty six clusters of 30 participants each were selected; each participant completed the EQ-5D-3L in a face-to-face interview. Utility weights for their EQ-5D-3L health states were assigned using the Sri Lankan EQ-5D-3L algorithm. The population norms are reported by age and socio-economic variables. Results The EQ-5D-3L was completed by 736 people, representing a 94% response rate. Sixty per cent of the sample reported being in full health. The percentage of people responding to any problems in the five EQ-5D-3L dimensions increased with age. The mean EQ-5D-3L weight was 0.85 (SD 0.008; 95%CI 0.84-0.87). The mean EQ-5D-3L weight was significantly associated with age, housing type, disease experience and religiosity. People above 70 years of age were 7.5 times more likely to report mobility problems and 3.7 times more likely to report pain/discomfort than those aged 18-29 years. Those with a tertiary education were five times less likely to report any HRQoL problems than those without a tertiary education. A person living in a shanty was 4.3 more likely to have problems in usual activities than a person living in a single house. Conclusion The population norms in Sri Lanka vary with socio-demographic characteristics. The socioeconomically disadvantaged have a lower HRQoL. The trends of population norms observed in this lower middle income country were generally similar to those previously reported in high income countries

Participation and satisfaction after spinal cord injury: results of a vocational and leisure outcome study

Study design: Survey. Objectives: Insight in (1) the changes in participation in vocational and leisure activities and (2) satisfaction with the current participation level of people with spinal cord injuries (SCIs) after reintegration in society. Design: Descriptive analysis of data from a questionnaire. Setting: Rehabilitation centre with special department for patients with SCIs, Groningen, The Netherlands. Subjects: A total of 57 patients with traumatic SCI living in the community, who were admitted to the rehabilitation centre two to 12 years before the current assessment. Main outcome measures: Changes in participation in activities; current life satisfaction; support and unmet needs. Results: Participation expressed in terms of hours spent on vocational and leisure activities changed to a great extent after the SCI. This was mainly determined by a large reduction of hours spent on paid work. While 60% of the respondents successfully reintegrated in work, many changes took place in the type and extent of the job. Loss of work was partially compensated with domestic and leisure activities. Sports activities were reduced substantially. The change in participation level and compensation for the lost working hours was not significantly associated with the level of SCI-specific health problems and disabilities. As was found in other studies, most respondents were satisfied with their lives. Determinants of a negative life satisfaction several years following SCI were not easily indicated. Reduced quality of life was particularly related to an unsatisfactory work and leisure situation. Conclusions: Most people with SCI in this study group were able to resume work and were satisfied with their work and leisure situation

The proangiogenic capacity of polymorphonuclear neutrophils delineated by microarray technique and by measurement of neovascularization in wounded skin of CD18-deficient mice

Growing evidence supports the concept that polymorphonuclear neutrophils (PMN) are critically involved in inflammation-mediated angiogenesis which is important for wound healing and repair. We employed an oligonucleotide microarray technique to gain further insight into the molecular mechanisms underlying the proangiogenic potential of human PMN. In addition to 18 known angiogenesis-relevant genes, we detected the expression of 10 novel genes, namely midkine, erb-B2, ets-1, transforming growth factor receptor-beta(2) and -beta(3), thrombospondin, tissue inhibitor of metalloproteinase 2, ephrin A2, ephrin B2 and restin in human PMN freshly isolated from the circulation. Gene expression was confi rmed by the RT-PCR technique. In vivo evidence for the role of PMN in neovascularization was provided by studying neovascularization in a skin model of wound healing using CD18-deficient mice which lack PMN infi ltration to sites of lesion. In CD18-deficient animals, neo- vascularization was found to be signifi cantly compromised when compared with wild- type control animals which showed profound neovascularization within the granulation tissue during the wound healing process. Thus, PMN infiltration seems to facilitate inflammation mediated angiogenesis which may be a consequence of the broad spectrum of proangiogenic factors expressed by these cells. Copyright (c) 2006 S. Karger AG, Basel

Meaning and components of Quality of Life among individuals with spinal cord injury in Yogyakarta Province, Indonesia

Purpose: Knowledge on the meaning of quality of life in individuals with spinal cord injury in developing countries is limited. This study aims to explore the meaning and components of quality of life for individuals with spinal cord injury in a rural area in Indonesia. Method: Data were obtained through semi-structured interviews with 12 individuals with paraplegia (8 males, 4 females) aged 24–67 years. Thematic analysis was used to identify themes that constitute meaning and components of quality of life. Results: Quality of life was not an easily understood concept, while “life satisfaction” and “happiness” were. Life satisfaction was associated with a person’s feeling when achieving goals or dreams and related to fulfillment of needs. Thirteen components of life satisfaction were identified and categorized into five domains as follows: (1) participation: earning income and work, being useful to others, community participation, and having skills and knowledge, (2) social support: social support, social relationship, (3) relationship with God: injury is God’s will, praying, (4) independence: being independent, mobility and accessibility, and health, and (5) psychological resources: accepting the condition, maintaining goals and motivation. Conclusions: Social, cultural and religious influences were prominent in the perception of life satisfaction. The measurement of quality of life for individuals with spinal cord injury in Indonesia needs to consider locally perceived meaning and components of quality of life. Implications for Rehabilitation Financial, social and health needs of individuals with spinal cord injury in Indonesia must be immediately addressed. To increase financial independence, rehabilitation professionals should equip individuals with spinal cord injury with adequate self-employment skills. Sociocultural and religious aspects should be considered in the measurement of quality of life

Subjective wellbeing among young dancers with disabilities

Little is known about the subjective wellbeing (SWB) of young dancers with disabilities and whether it changes over time. The aim of this study was to assess the SWB of young dancers with disabilities enrolled on an extracurricular inclusive talent development programme in the UK at two time points. Twenty-two young dancers completed the Personal Wellbeing Index for people with intellectual disability at the beginning of the academic year. Thirteen dancers completed the questionnaire a second time towards the end of the academic year. Scores were compared with normative values, and a Wilcoxon Signed Rank test was conducted to assess change over time. The participants reported high levels of SWB at both time points in comparison with normative values. There was no significant change in wellbeing scores over time. The study contributes to a growing body of literature suggesting that people with disabilities have high levels of SWB. Although causality cannot be assumed, inclusive dance programmes may contribute to SWB and allow young people with disabilities to overcome the barriers associated with physical activity

“I Think I Became a Swimmer Rather than Just Someone with a Disability Swimming Up and Down”: Paralympic Athletes Perceptions of Self and Identity Development

This is an Accepted Manuscript of an article published by Taylor & Francis Group in Disability and Rehabilitation on 27 September 2016, available online at:DOI: https://doi.org/10.1080/09638288.2016.1217074.Purpose: The purpose of this study was to explore the role of swimming on Paralympic athletes’ perceptions of self and identity development. Method: A hermeneutic phenomenological approach was taken. During semi-structured interviews five Paralympic swimmers (aged 20-24 years) were asked questions about their swimming career, perceptions of self, integration, and impairment. Interviews were audio-recorded and transcribed verbatim. Results: An Interpretative Phenomenological Analysis1 yielded three superordinate themes: a) ‘One of the crowd’; none of the participants viewed themselves as disabled, nor as supercrips; these perceptions stemmed from family-, school-, and swimming- related experiences, b) ‘Becoming me’; participation in swimming facilitated self- and social-acceptance, and identity development, and c) ‘A badge of honour’; swimming presented opportunity to present and reinforce a positive identity. Conclusions: Swimming experiences enabled the participants to enhance personal and social identities, integrate through pro-social mechanisms, and to develop a career path following retirement from competition.through pro-social mechanisms, and to develop a career path following retirement from competition.Peer reviewe

Spatial analysis of biomineralization associated gene expression from the mantle organ of the pearl oyster Pinctada maxima

Background: Biomineralization is a process encompassing all mineral containing tissues produced within an organism. One of the most dynamic examples of this process is the formation of the mollusk shell, comprising a variety of crystal phases and microstructures. The organic component incorporated within the shell is said to dictate this architecture. However general understanding of how this process is achieved remains ambiguous. The mantle is a conserved organ involved in shell formation throughout molluscs. Specifically the mantle is thought to be responsible for secreting the protein component of the shell. This study employs molecular approaches to determine the spatial expression of genes within the mantle tissue to further the elucidation of the shell biomineralization. Results: A microarray platform was custom generated (PmaxArray 1.0) from the pearl oyster Pinctada maxima. PmaxArray 1.0 consists of 4992 expressed sequence tags (ESTs) originating from mantle tissue. This microarray was used to analyze the spatial expression of ESTs throughout the mantle organ. The mantle was dissected into five discrete regions and analyzed for differential gene expression with PmaxArray 1.0. Over 2000 ESTs were determined to be differentially expressed among the tissue sections, identifying five major expression regions. In situ hybridization validated and further localized the expression for a subset of these ESTs. Comparative sequence similarity analysis of these ESTs revealed a number of the transcripts were novel while others showed significant sequence similarities to previously characterized shell related genes

A chronic fatigue syndrome – related proteome in human cerebrospinal fluid

BACKGROUND: Chronic Fatigue Syndrome (CFS), Persian Gulf War Illness (PGI), and fibromyalgia are overlapping symptom complexes without objective markers or known pathophysiology. Neurological dysfunction is common. We assessed cerebrospinal fluid to find proteins that were differentially expressed in this CFS-spectrum of illnesses compared to control subjects. METHODS: Cerebrospinal fluid specimens from 10 CFS, 10 PGI, and 10 control subjects (50 μl/subject) were pooled into one sample per group (cohort 1). Cohort 2 of 12 control and 9 CFS subjects had their fluids (200 μl/subject) assessed individually. After trypsin digestion, peptides were analyzed by capillary chromatography, quadrupole-time-of-flight mass spectrometry, peptide sequencing, bioinformatic protein identification, and statistical analysis. RESULTS: Pooled CFS and PGI samples shared 20 proteins that were not detectable in the pooled control sample (cohort 1 CFS-related proteome). Multilogistic regression analysis (GLM) of cohort 2 detected 10 proteins that were shared by CFS individuals and the cohort 1 CFS-related proteome, but were not detected in control samples. Detection of ≥1 of a select set of 5 CFS-related proteins predicted CFS status with 80% concordance (logistic model). The proteins were α-1-macroglobulin, amyloid precursor-like protein 1, keratin 16, orosomucoid 2 and pigment epithelium-derived factor. Overall, 62 of 115 proteins were newly described. CONCLUSION: This pilot study detected an identical set of central nervous system, innate immune and amyloidogenic proteins in cerebrospinal fluids from two independent cohorts of subjects with overlapping CFS, PGI and fibromyalgia. Although syndrome names and definitions were different, the proteome and presumed pathological mechanism(s) may be shared

Active rehabilitation - a community peer-based approach for persons with spinal cord injury: International utilisation of key elements

INTRODUCTION: Active Rehabilitation (AR) is a community peer-based approach that started in Sweden in 1976. As a key component of the approach, AR training camps provide intensive, goal-oriented, intentional, group-based, customised training and peer-support opportunities in a community environment for individuals with spinal cord injury. STUDY DESIGN: Prospective cross-sectional study. OBJECTIVES: To describe the profile of the organisations that use components of the AR approach, and to explore the characteristics and the international variations of the approach. SETTING: Twenty-two organisations from 21 countries from Europe, Asia and Africa reported using components of the AR approach during the past 10 years. METHODS: An electronic survey was developed and distributed through a personalised email. Sampling involved a prospective identification of organisations that met the inclusion criteria and snowball strategies. RESULTS: While there were many collaborating links between the organisations, RG Active Rehabilitation from Sweden and Motivation Charitable Trust from the United Kingdom were identified as key supporting organisations. The 10 key elements of the AR approach were found to be used uniformly across the participating organisations. Small variations were associated with variations in country income and key supporting organisation. CONCLUSIONS: This is the first study to describe the key elements and international variations of the AR approach. This will provide the basis for further studies exploring the effectiveness of the approach, it will likely facilitate international collaboration on research and operational aspects and it could potentially support higher integration in the health-care system and long-term funding of these programmes