Social/economic costs and health-related quality of life in patients with epidermolysis bullosa in Europe

BACKGROUND: The aim of this study was to determine the social/economic costs and health-related quality of life (HRQOL) of patients with epidermolysis bullosa (EB) in eight EU member states. METHODS: We conducted a cross-sectional study of patients with EB from Bulgaria, France, Germany, Hungary, Italy, Spain, Sweden and the United Kingdom. Data on demographic characteristics, health resource utilisation, informal care, labour productivity losses, and HRQOL were collected from the questionnaires completed by patients or their caregivers. HRQOL was measured with the EuroQol 5-domain (EQ-5D) questionnaire. RESULTS: A total of 204 patients completed the questionnaire. Average annual costs varied from country to country, and ranged from euro9509 to euro49,233 (reference year 2012). Estimated direct healthcare costs ranged from euro419 to euro10,688; direct non-healthcare costs ranged from euro7449 to euro37,451 and labour productivity losses ranged from euro0 to euro7259. The average annual cost per patient across all countries was estimated at euro31,390, out of which euro5646 accounted for direct health costs (18.0 %), euro23,483 accounted for direct non-healthcare costs (74.8 %), and euro2261 accounted for indirect costs (7.2 %). Costs were shown to vary across patients with different disability but also between children and adults. The mean EQ-5D score for adult EB patients was estimated at between 0.49 and 0.71 and the mean EQ-5D visual analogue scale score was estimated at between 62 and 77. CONCLUSION: In addition to its negative impact on patient HRQOL, our study indicates the substantial social/economic burden of EB in Europe, attributable mostly to high direct non-healthcare costs.

Non-institutionalized nonagenarians health-related quality of life and nutritional status: is there a link between them?

Introduction: Nonagenarian population, clearly increasing, shows different characteristics from the rest of elderly people. Health-related quality of life is a way to study population health in physical, psychological and social dimensions. Objectives: To examine the relationship between nutritional status and health-related quality of life in a group of free-living nonagenarians. Differences with octogenarians were also studied. Methods: Within Villanueva Older Health Study, 20 non-institutionalised people (92.5±3.5 years; 80% women) make the nonagenarian subsample. Nutritional risk was assessed by Mininutritional Assessment questionnaire, dietary intake by a 24-hour dietary recall and health-related quality of life by EuroQoL-5D questionnaire. SPSS was used for statistical analysis. Results: 40% nonagenarians were at risk of malnutrition. Dietary assessment showed magnesium, zinc, potassium, folic acid, vitamin D and vitamin E deficiencies. Problems in mobility were more frequently reported (80%). EQ-5Dindex was associated with MNA (p<0.05). Self-care dimension was associated with calcium and niacin (p<0.05), retinol and cholesterol (p<0.01) intake. Usual activities dimension was associated with niacin (p<0.01) and cholesterol(p<0.05) intake. Pain/discomfort dimension was associated with protein (p<0.01), energy, selenium and niacin (p<0.05) intake. Anxiety/depression was associated with protein(p<0.01) and selenium (p<0.05) intake. Conclusions: Risk of malnutrition is a factor associated to health-related quality of life. Results suggest that energy and some nutrient intakes could be possibly associated to health-related quality of life but further research on this influence is required.

Desenvolvimento e otimização de um filme biodegradável à base de proteína do tremoço (Lupinus angustifolius)

Dissertação de Mestrado, Biologia Molecular e Microbiana, Faculdade de Ciências e Tecnologia, Universidade do Algarve, 2015

Competências sócio-emocionais de crianças com dificuldades de aprendizagem: Percepção de pais e professores

Os pais e os professores vivenciam o quotidiano das crianças e constituem-se como observadores significativos (Guaragna e tal., 2005; Pires et al, 2008) e as suas perceções acerca dos filhos e alunos influenciam os comportamentos destes (Zirkel, 2002). Porém, as características das crianças parecem influir na perceção de pais e na perceção de professores (Pires et al., 2008). As crianças com DA apresentam características sócio emocionais próprias: instabilidade emocional, pouca tolerância à frustração (Fonseca, 2008) e dificuldades na interação social (Framer et al., 2008). As competências sociais e emocionais são muito relevantes no processo adaptativo da criança e contribuem para a consecução de objetivos sociais (Candeias, 2008; Anderson-Butcher et al., 2008; Buckley & Saarnni, 2006; Saarni, 2002). Neste contexto, considerando o papel especial dos pais e professores no processo desenvolvimental das crianças com dificuldades de aprendizagem (DA), desenvolvemos um estudo que investigou a perceção de 37 pais e 66 professores acerca das competências sócio emocionais de crianças entre os 6 e 11 anos com DA. No estudo foram utilizados o Inventário do Quociente Emocional Bar-On, (EQ-i: Pa, versão original de Bar-On & Parker, 2004) nas suas versões para pais e para professores, e a Prova de Avaliação da Competência Social (PACS-6/11, Candeias et al., 2008; Candeias, 2008b), para avaliar, respetivamente, a perceção sobre a inteligência emocional e sobre a competência social. Os principais resultados sugerem que os pais avaliam mais positivamente as competências emocionais das crianças e que a avaliação das competências sociais dos pais é semelhante à dos docentes /ABSTRACT: Parents and teachers are significant observers and participants in every day’s children's life's and their perceptions about their sons and pupils can influence their on behavior (Zirkel, 2002). However, children’s characteristics can influence parent’s perceptions and teacher’s perceptions (Pires et a/., 2008). Children with learning disabilities (LD) have singular social-emotional characteristics: emotional instability, low tolerance to frustant events (Fonseca, 2008) and difficulties in social interactions (Framer et al., 2008). Social and emotional competences are relevant in children's adaptation process and contribute to the fulfillemente of social goals (Candeias, 2008; Anderson-Butcher et a/., 2008; Buckley & Saarnni, 2006; Saarni, 2002). ln this context, considering teachers’ and parent’s special role throughout the growing process, we developed a study that investigated the perception of 37 parents and 66 teachers about the social-emotional competences of children’s (with ages between 6 and 11 years) with LO. Results suggests that (a) parent’s perception of emotional competence has higher values, (b) there is no significate differences between parents and teacher’s perception about social competence.

Competências sócio-emocionais em crianças com dificuldades de aprendizagem : Estudo de caracterização em alunos do 1º ciclo do ensino básico

As dificuldades de aprendizagem são tema de grande relevância no campo da educação, pelas repercussões que têm no desenvolvimento das crianças que as possuem, quer a nível pessoal, familiar, escolar e social. A compreensão das competências sócio-emocionais destas crianças surge como objecto de estudo desta investigação. A amostra é constituída por 74 crianças com dificuldades de aprendizagem do 1° Ciclo do Ensino Básico. Os instrumentos utilizados foram: o Inventário de Quociente Emocional Bar-On: Versão para crianças (EQ-i:YV; versão portuguesa; Candeias et al., 2008), o Teste de Resolução de Problemas lnterpessoais da Inteligência Social para Crianças (PRPI - 6/11; Candeias et al., 2008), o Teste de Competências Sociais para Crianças (PACS - Socialmente em Acção 6/11, Candeias et al., 2008), o Teste de Percepção de Emoções (Franco & Candeias, 2008) e as Matrizes Progressivas Coloridas de Raven (MPCR, Raven, 1965). Estudaram-se as relações entre a inteligência social, inteligência emocional, competência social e variáveis sócio-demográficas como a idade, o nível sócio-económico e a participação social destas crianças. Conclui-se que, quanto mais elevada é a competência emocional destes alunos, menores serão as suas dificuldades em termos de competência social. Estes achados permitem aumentar o conhecimento teórico sobre esta problemática, possibilitando a aplicação prática na intervenção psicológica e psicopedagógica. / ABSTRACT: Learning difficulties are the subject of great relevance in education, the impact they have on the development of children who have, whether for personal, familial, educational and social. Understanding of the socio-emotional skills of these children appears to be the subject of this research study. This study used a sample of 74 children with learning difficulties the first cycle of the cities of Évora and Montemor-o­ Novo. We applied: Emotional Quocient lnventory Bar-On: young version (EQ-i: YV; Candeias et al., 2008); Perception and Recognition Emotions (Franco & Candeias, 2008); Cognitive Test of Social lntelligence for Children (PRPI-6/11; Candeias et al., 2008); Social Competence Test for Children (PACS-6/11; Candeias et al., 2008) and Coloured Progressive Matrices (CPM, Raven, 1965). We studied the relationship between social intelligence, emotional intelligence, social competence and socio-demographic variables such as age, socio-economic and social participation of these children. lt was concluded that, the higher the emotional competence of these students, lower their difficulties in terms of social competence. These findings increase the theoretical knowledge on this issue, enabling the practical application in psychological and pedagogic. This study leaves open some suggestions for future work.

Effectiveness of diapers among people with chronic incontinence in Thailand

Objectives:
The aim of this study was to assess effect of adult diapers on health-related quality of life (HRQOL) and the independent level of performing activities of daily living (ADLs) in people with urinary or fecal incontinence. Psychological consequences of patients’ caregivers were also measured.
Methods:
This quasi-experimental study was conducted at two rehabilitation centers in Thailand. People aged 15 years or greater with chronic urinary or fecal incontinence were
eligible. Study participants received adult diapers for 10 weeks after recruitment. Thai EuroQol Five Dimensions (EQ-5D) and the Barthel Index were measured at baseline and weeks
2, 6, and 10 to evaluate HRQOL and the independent level of performing ADLs, respectively. The Braden Scale was used to assess the risk of having pressure ulcers. Mean
differences in the Thai EQ-5D, the Barthel Index, and the Braden Scale, before and after receiving adult diapers, were estimated using a multilevel linear regression model.
Results:
There were ninety patients and forty-eight caregivers who took part in this study. HRQOL and independent level of performing ADLs had improved significantly by week 10
after receiving adult diapers with mean differences of 0.102 (95% confidence interval [CI], 0.046–0.158) and 4.40 (95% CI, 1.74–7.07), respectively. The risk of having
pressure ulcers had significantly decreased by 67 percent (95% CI, 16 percent–78 percent) by week 10 after receiving adult diapers.
Conclusions:
The results indicate a significant improvement of HRQOL and the independent level of performing ADLs among incontinent patients after receiving adult diapers. These results were used to inform the development of the health benefits package under the Universal Health Coverage Scheme in Thailand.

Burden of epilepsy: a prevalence-based cost of illness study of direct, indirect and intangible costs for epilepsy

OBJECTIVES: We aimed to gauge the burden of epilepsy in China from a societal perspective by estimating the direct, indirect and intangible costs. METHODS: Patients with epilepsy and controls were enrolled from two tertiary hospitals in China. Patients were asked to complete a Cost-of-Illness (COI), Willingness-to-Pay (WTP) questionnaires, two utility elicitation instruments and Mini Mental State Examination (MMSE). Healthy controls only completed WTP questionnaire, and utility instruments. Univariate analyses were performed to investigate the differences in cost on the basis of different variables, while multivariate analysis was undertaken to explore the predictors of cost/cost component. RESULTS: In total, 141 epilepsy patients and 323 healthy controls were recruited. The median total cost, direct cost and indirect cost due to epilepsy were US$949.29, 501.34 and 276.72, respectively. Particularly, cost of anti-epileptic drugs (AEDs) (US$394.53) followed by cost of investigations (US$59.34), cost of inpatient and outpatient care (US$9.62) accounted for the majority of the direct medical costs. While patients' (US$103.77) and caregivers' productivity costs (US$103.77) constituted the major component of indirect cost. The intangible costs in terms of WTP value (US$266.07 vs. 88.22) and utility (EQ-5D, 0.828 vs. 0.923; QWB-SA, 0.657 vs. 0.802) were both substantially higher compared to the healthy subjects. CONCLUSIONS: Epilepsy is a cost intensive disease in China. According to the prognostic groups, drug-resistant epilepsy generated the highest total cost whereas patients in seizure remission had the lowest cost. AED is the most costly component of direct medical cost probably due to 83% of patients being treated by new generation of AEDs.

Twelve-month outcomes following surgical repair of the achilles tendon

IntroductionIncidence of Achilles tendon rupture (ATR) has increased over recent years, and debate regarding optimal management has been widely documented. Most papers have focused on surgical success, complications and short term region-specific outcomes. Inconsistent use of standardised outcome measures following surgical ATR repair has made it difficult to evaluate the impact of ATR on a patient’s health status post-surgery, and to compare this to other injury types. This study aimed to report the frequency of surgical repairs of the Achilles tendon over a five-year period within an orthopaedic trauma registry, and to investigate return to work (RTW) status, health status and functional outcomes at 12 months post-surgical repair of the Achilles tendon.MethodsTwo hundred and four adults registered by the Victorian Orthopaedic Trauma Outcomes Registry (VOTOR) who underwent surgical repair of the Achilles tendon between July 2009 and June 2014 were included in this prospective cohort study. The Extended Glasgow Outcome Scale (GOS-E), 3-level European Quality of Life 5 Dimension measure (EQ-5D-3L), and RTW status 12 months following surgical ATR repair were collected through structured telephone interviews conducted by trained interviewers.ResultsAt 12 months, 92% of patients were successfully followed up. Of those working prior to injury, 95% had returned to work. 42% of patients reported a full recovery on the GOS-E scale. The prevalence of problems on the EQ-5D–3 L at 12 months was 0.5% for self-care, 11% for anxiety, 13% for mobility, 16% for activity, and 22% for pain. 16% of patients reported problems with more than one domain. The number of surgical repairs of the Achilles tendon within the VOTOR registry decreased by 68% over the five-year study period.ConclusionsOverall, patients recover well following surgical repair of the Achilles tendon. However, in this study, deficits in function persisted for over half of patients at 12 months post-injury. The decreased incidence of surgical Achilles tendon repair may reflect a change in practice at VOTOR hospitals whereby surgery may be becoming less favoured for initial ATR management.

CHARACTERIZING AND IMPROVING PRODUCTION OF FERMENTABLE SUGARS AND CO-PRODUCTS FROM A FOREST PRODUCT INDUSTRY WASTEWATER STREAM

Hardboard processing wastewater was evaluated as a feedstock in a bio refinery co-located with the hardboard facility for the production of fuel grade ethanol. A thorough characterization was conducted on the wastewater and the composition changes of which during the process in the bio refinery were tracked. It was determined that the wastewater had a low solid content (1.4%), and hemicellulose was the main component in the solid, accounting for up to 70%. Acid pretreatment alone can hydrolyze the majority of the hemicellulose as well as oligomers, and over 50% of the monomer sugars generated were xylose. The percentage of lignin remained in the liquid increased after acid pretreatment. The characterization results showed that hardboard processing wastewater is a feasible feedstock for the production of ethanol. The optimum conditions to hydrolyze hemicellulose into fermentable sugars were evaluated with a two-stage experiment, which includes acid pretreatment and enzymatic hydrolysis. The experimental data were fitted into second order regression models and Response Surface Methodology (RSM) was employed. The results of the experiment showed that for this type of feedstock enzymatic hydrolysis is not that necessary. In order to reach a comparatively high total sugar concentration (over 45g/l) and low furfural concentration (less than 0.5g/l), the optimum conditions were reached when acid concentration was between 1.41 to 1.81%, and reaction time was 48 to 76 minutes. The two products produced from the bio refinery were compared with traditional products, petroleum gasoline and traditional potassium acetate, in the perspective of sustainability, with greenhouse gas (GHG) emission as an indicator. Three allocation methods, system expansion, mass allocation and market value allocation methods were employed in this assessment. It was determined that the life cycle GHG emissions of ethanol were -27.1, 20.8 and 16 g CO2 eq/MJ, respectively, in the three allocation methods, whereas that of petroleum gasoline is 90 g CO2 eq/MJ. The life cycle GHG emissions of potassium acetate in mass allocation and market value allocation method were 555.7 and 716.0 g CO2 eq/kg, whereas that of traditional potassium acetate is 1020 g CO2/kg.

The Relationships between Elementary School Principals' Emotional Intelligence, Leadership Style and School Culture

The role of the principal in school settings and the principal’s perceived effect on student achievement have frequently been considered vital factors in school reform. The relationships between emotional intelligence, leadership style and school culture have been widely studied. The literature reveals agreement among scholars regarding the principal’s vital role in developing and fostering a positive school culture. The purpose of this study was to explore the relationships between elementary school principals’ emotional intelligence, leadership style and school culture. The researcher implemented a non-experimental ex post facto research design to investigate four specific research hypotheses. Utilizing the Qualtrics Survey Software, 57 elementary school principals within a large urban school district in southeast Florida completed the Emotional Quotient Inventory (EQ-i), and 850 of their faculty members completed the Multifactor Leadership Questionnaire (MLQ Form 5X). Faculty responses to the school district’s School Climate Survey retrieved from the district’s web site were used as the measure of school culture. Linear regression analyses revealed significant positive associations between emotional intelligence and the following leadership measures: Idealized Influence-Attributes (β = .23, p = < .05), Idealized Influence-Behaviors (β = .34, p = < .01), Inspirational Motivation (β = .39, p = < .01) and Contingent Reward (β = .33, p = < .01). Hierarchical regression analyses revealed positive associations between school culture and both transformational and transactional leadership measures, and negative associations between school culture and passive-avoidant leadership measures. Significant positive associations were found between school culture and the principals’ emotional intelligence over and above leadership style. Hierarchical linear regressions to test the statistical hypothesis developed to account for alternative explanations revealed significant associations between leadership style and school culture over and above school grade. These results suggest that emotional intelligence merits consideration in the development of leadership theory. Practical implications include suggestions that principals employ both transformational and transactional leadership strategies, and focus on developing their level of emotional intelligence. The associations between emotional intelligence, transformational leadership, Contingent Reward and school culture found in this study validate the role of the principal as the leader of school reform.

Effect of investigation intensity and treatment differences on prostate cancer survivor's physical symptoms, psychological well-being and health-related quality of life: a two country cross-sectional study.

Aim: To investigate effects on men's health and well-being of higher prostate cancer (PCa) investigation and treatment levels in similar populations. Participants: PCa survivors in Ireland where the Republic of Ireland (RoI) has a 50% higher PCa incidence than Northern Ireland (NI). Method: A cross-sectional postal questionnaire was sent to PCa survivors 2–18 years post-treatment, seeking information about current physical effects of treatment, health-related quality of life (HRQoL; EORTC QLQ-C30; EQ-5D-5L) and psychological well-being (21 question version of the Depression, Anxiety and Stress Scale, DASS-21). Outcomes in RoI and NI survivors were compared, stratifying into ‘late disease’ (stage III/IV and any Gleason grade (GG) at diagnosis) and ‘early disease’ (stage I/II and GG 2–7). Responses were weighted by age, jurisdiction and time since diagnosis. Between-country differences were investigated using multivariate logistic and linear regression. Results: 3348 men responded (RoI n=2567; NI n=781; reflecting population sizes, response rate 54%). RoI responders were younger; less often had comorbidities (45% vs 38%); were more likely to present asymptomatically (66%; 41%) or with early disease (56%; 35%); and less often currently used androgen deprivation therapy (ADT; 2%; 28%). Current prevalence of incontinence (16%) and impotence (56% early disease, 67% late disease) did not differ between RoI and NI. In early disease, only current bowel problems (RoI 12%; NI 21%) differed significantly in multivariate analysis. In late disease, NI men reported significantly higher levels of gynaecomastia (23% vs 9%) and hot flashes(41% vs 19%), but when ADT users were analysed separately, differences disappeared. For HRQoL, in multivariate analysis, only pain (early disease: RoI 11.1, NI 19.4) and financial difficulties (late disease: RoI 10.4, NI 7.9) differed significantly between countries. There were no significant between-country differences in DASS-21 or index ED-5D-5L score. Conclusions: Treatment side effects were commonly reported and increased PCa detection in RoI has left more men with these side effects. We recommended that men be offered a PSA test only after informed discussion.

Comparing children's self-report instruments for health-related quality of life using the International Classification of Functioning, Disability and Health for Children and Youth (ICF-CY)

Children with chronic conditions often experience a long treatment which can be complex and negatively impacts the child's well-being. In planning treatment and interventions for children with chronic conditions, it is important to measure health-related quality of life (HrQoL). HrQoL instruments are considered to be a patient-reported outcome measure (PROM) and should be used in routine practice. Purpose: The aim of this study was to compare the content dimensions of HrQoL instruments for children's self-reports using the framework of ICF-CY. Method: The sample consist of six instruments for health-related quality of life for children 5 to 18 years of age, which was used in the Swedish national quality registries for children and adolescents with chronic conditions. The following instruments were included: CHQ-CF, DCGM-37, EQ-5D-Y, KIDSCREEN-52, Kid-KINDL and PedsQL 4.0. The framework of the ICF-CY was used as the basis for the comparison. Results: There were 290 meaningful concepts identified and linked to 88 categories in the classification ICF-CY with 29 categories of the component body functions, 48 categories of the component activities and participation and 11 categories of the component environmental factors. No concept were linked to the component body structures. The comparison revealed that the items in the HrQoL instruments corresponded primarily with the domains of activities and less with environmental factors. Conclusions: In conclusion, the results confirm that ICF-CY provide a good framework for content comparisons that evaluate similarities and differences to ICF-CY categories. The results of this study revealed the need for greater consensus of content across different HrQoL instruments. To obtain a detailed description of children's HrQoL, DCGM-37 and KIDSCREEN-52 may be appropriate instruments to use that can increase the understanding of young patients' needs.

Association of myocardial T1-mapping CMR with hemodynamics and RV performance in pulmonary hypertension

Early detection of right ventricular (RV) involvement in chronic pulmonary hypertension (PH) is essential due to prognostic implications. T1 mapping by cardiac magnetic resonance (CMR) has emerged as a noninvasive technique for extracellular volume fraction (ECV) quantification. We assessed the association of myocardial native T1 time and equilibrium contrast ECV (Eq-ECV) at the RV insertion points with pulmonary hemodynamics and RV performance in an experimental model of chronic PH. Right heart catheterization followed by immediate CMR was performed on 38 pigs with chronic PH (generated by surgical pulmonary vein banding) and 6 sham-operated controls. Native T1 and Eq-ECV values at the RV insertion points were both significantly higher in banded animals than in controls and showed significant correlation with pulmonary hemodynamics, RV arterial coupling, and RV performance. Eq-ECV values also increased before overt RV systolic dysfunction, offering potential for the early detection of myocardial involvement in chronic PH.

Older adults' quality of life - exploring the role of the built environment and social cohesion in community-dwelling seniors on low income

The built environment and social cohesion are increasingly recognized as being associated with older adults' quality of life (QoL). However, limited research in this area still exists and the relationship has remained unexplored in the area of Metro Vancouver, Canada. This study examined the association between the built environment and social cohesion with QoL of 160 community-dwelling older adults (aged ≥ 65 years) on low income from Metro Vancouver. Cross-sectional data acquired from the Walk the Talk (WTT) study were used. Health-related QoL (HRQoL) and capability wellbeing were assessed using the EQ-5D-5L and the ICECAP-O, respectively. Measures of the environment comprised the NEWS-A (perceived built environment measure), the Street Smart Walk Score (objective built environment measure), and the SC-5PT (a measure of social cohesion). The primary analysis consists of Tobit regression models to explore the associations between environmental features and HRQoL as well as capability wellbeing. Key findings indicate that after adjusting for covariates, older adults' capability wellbeing was associated with street connectivity and social cohesion, while no statistically significant associations were found between environmental factors and HRQoL. Our results should be considered as hypothesis-generating and need confirmation in a larger longitudinal study.

Perceptions of individuals living with spinal cord injury toward preference-based quality of life instruments : a qualitative exploration

BACKGROUND: Generic preference-based health-related quality of life instruments are widely used to measure health benefit within economic evaluation. The availability of multiple instruments raises questions about their relative merits and recent studies have highlighted the paucity of evidence regarding measurement properties in the context of spinal cord injury (SCI). This qualitative study explores the views of individuals living with SCI towards six established instruments with the objective of identifying 'preferred' outcome measures (from the perspective of the study participants). METHODS: Individuals living with SCI were invited to participate in one of three focus groups. Eligible participants were identified from Vancouver General Hospital's Spine Program database; purposive sampling was used to ensure representation of different demographics and injury characteristics. Perceptions and opinions were solicited on the following questionnaires: 15D, Assessment of Quality of Life 8-dimension (AQoL-8D), EQ-5D-5L, Health Utilities Index (HUI), Quality of Well-Being Scale Self-Administered (QWB-SA), and the SF-36v2. Framework analysis was used to analyse the qualitative information gathered during discussion. Strengths and limitations of each questionnaire were thematically identified and managed using NVivo 9 software. RESULTS: Major emergent themes were (i) general perceptions, (ii) comprehensiveness, (iii) content, (iv) wording and (v) features. Two sub-themes pertinent to content were also identified; 'questions' and 'options'. All focus group participants (n = 15) perceived the AQoL-8D to be the most relevant instrument to administer within the SCI population. This measure was considered to be comprehensive, with relevant content (i.e. wheelchair inclusive) and applicable items. Participants had mixed perceptions about the other questionnaires, albeit to varying degrees. CONCLUSIONS: Despite a strong theoretical underpinning, the AQoL-8D (and other AQoL instruments) is infrequently used outside its country of origin (Australia). Empirical comparative analyses of the favoured instruments identified in this qualitative study are necessary within the context of spinal cord injury.