Specific Quality Of Life Measures Research Articles

Highly purified cannabidiol in the treatment of drug-resistant epilepsies: A real-life impact on seizure frequency, quality of life, behavior, and sleep patterns from a single Italian center

Seizure frequency in treatment-resistant epilepsies seems to be decreased by cannabidiol (CBD), but contrasting data are available on its effect on sleep, behavior, and quality of life (QoL), and no data is reported on its effect on parental stress in patients with epilepsy (PWE). Thus, we conducted a retrospective study on a cohort of children and adults with drug-resistant epilepsy (DRE) who had been treated with highly purified, pharmaceutical-grade CBD to evaluate its effects on seizure frequency, QoL, behavior, parental stress, and sleep. Eighteen patients (12 adults and 6 children) were included in the cohort and followed for a median of 9 months. At the last follow-up (Tn), nine patients (50%) were considered CBD responders with at least a 50% decrease in seizure frequency. No serious adverse effects were found. No statistically significant differences were found concerning sleep, including daytime sleepiness, and no statistically significant effect was found on parental stress at Tn. An improvement was found for social interaction in quality of life (p < 0.05) for all patients. Our results demonstrate that CBD is a safe and effective antiseizure medication (ASM). CBD doesn’t seem to affect sleep measures in adults and children or worsen daytime sleepiness. However, CBD improves specific QoL measures, which could indicate a possible use of CBD for other childhood disabilities. No impact of CBD was seen on parental stress, which could possibly be due to the limited follow-up or could mean that parental stress is not dependent on seizure frequency.

Development and validation of a measure of adolescent and young adult goal-based quality of life (MAYA-GQOL).

We developed and validated a measure assessing quality of life (QOL) through importance, attainability, and discrepancy of life goals among adolescents and young adults (AYA) with and without cancer. A specific goal-based QOL measure for AYA fills a critical gap in knowledge for AYA who are at a unique life stage, which may include shifts in priorities and goals. Through review of our existing AYA databases on goals, the literature, and cognitive interviews we developed the MAYA-GQOL. Items were administered to AYA with cancer (on/off treatment) (n = 124) and healthy AYA controls (n = 103) aged 15-29years old. Psychometric analyses for comparison with existing QOL measures and discrepancies in perceived importance/attainability of goals were examined. An item pool of 700 goals, based on prior research, was refined to 173 goals across nine categories: academic, administrative, body, health, job, leisure, interpersonal, intrapersonal, and religion. Validation between the MAYA-GQOL and existing QOL measures was supported. AYA survivors reported fewer overall current goals and fewer administrative, interpersonal, leisure, and religious goals. AYA survivors rated body goal importance significantly higher than healthy controls and intrapersonal goal importance significantly lower. Little discrepancy in importance and attainability across AYA was found. The MAYA-GQOL represents an innovative way of measuring QOL among AYA by focusing on the relative importance, attainability, and discrepancy of developmentally appropriate goals. The MAYA-GQOL can identify areas of resilience and competence via assessment of important and attainable goals and can further assess how AYA with chronic illness are functioning relative to peers on goal domains relevant to the AYA developmental period.

Individuals with stroke three months after hospital discharge reported worse quality of life during the COVID-19 pandemic

PurposeTo compare quality of life (QOL) of individuals with stroke three months after hospital discharge, using generic and specific QOL measures, before and during the COVID-19 pandemic. MethodsIndividuals, who were admitted to a public hospital, were recruited and evaluated before (G1) and during (G2) the COVID-19 pandemic. The groups were matched for age, sex, socio-economic status, and levels of stroke severity (National Institutes of Health Stroke Scale) and functional dependence (Modified Barthel Index). After three months of hospital discharge, they were evaluated and compared using generic (Short-form Health Survey 36: SF-36) and specific (Stroke Specific Quality of Life: SSQOL) QOL measures. ResultsSeventy individuals were included (35 in each group). Statistically significant between-group differences were found for both total SF-36 (p=0.008) and SSQOL (p=0.001) scores, indicating that individuals reported worse QOL during the COVID-19 pandemic. Furthermore, G2 also reported worse generic QOL related to the SF-36 domains of physical functioning, bodily pain, general health perception, and emotional role limitations (p < 0.01) and worse specific QOL related to following SSQOL domains: Family roles, mobility, mood, personality, and social roles (p < 0.05). Finally, G2 reported better QOL related to energy and thinking (p < 0.05) SSQOL domains. ConclusionIn general, individuals with stroke, who were evaluated during the COVID-19 pandemic three months after hospital discharge, reported worse perceptions of QOL in several domains of both generic and specific QOL measures.

The ICaRAS randomised controlled trial: Intravenous iron to treat anaemia in people with advanced cancer – feasibility of recruitment, intervention and delivery

Background: Anaemia is highly prevalent in people with advanced, palliative cancer yet sufficiently effective and safe treatments are lacking. Oral iron is poorly tolerated, and blood transfusion offers only transient benefits. Intravenous iron has shown promise as an effective treatment for anaemia but its use for people with advanced, palliative cancer lacks evidence. Aims: To assess feasibility of the trial design according to screening, recruitment, and attrition rates. To evaluate the efficacy of intravenous iron to treat anaemia in people with solid tumours, receiving palliative care. Design: A multicentre, randomised, double blind, placebo-controlled trial of intravenous iron (ferric derisomaltose, Monofer®). Outcomes included trial feasibility, change in blood indices, and change in quality of life via three validated questionnaires (EQ5D5L, QLQC30, and the FACIT-F) over 8 weeks. (ISRCTN; 13370767). Setting/Participants: People with anaemia and advanced solid tumours who were fatigued with a performance status ⩽2 receiving support from a specialist palliative care service. Results: 34 participants were randomised over 16 months (17 iron, 17 placebo). Among those eligible 47% of people agreed to participate and total study attrition was 26%. Blinding was successful in all participants. There were no serious adverse reactions. Results indicated that intravenous iron may be efficacious at improving participant haemoglobin, iron stores and select fatigue specific quality of life measures compared to placebo. Conclusion: The trial was feasible according to recruitment and attrition rates. Intravenous iron increased haemoglobin and may improve fatigue specific quality of life measures compared to placebo. A definitive trial is required for confirmation.

A decade of arteriovenous fistula creations in the ⩾75 years population: Equal opportunity or sub-optimal use of resources.

The optimal vascular access in the elderly remains contentious in the context of increasingly limited resources and anticipated survival on hemodialysis. Research focus has shifted to include the impact of vascular access on quality of life. This study explored clinical outcomes in individuals aged ⩾75 years who had an arteriovenous fistula (AVF) created in a single center over a 10-year period. Demographic and clinical data concerning AVFs created January 2009-December 2019 were identified from a prospective database for retrospective analysis. Outcome measures were AVF patency and failure to mature rates plus overall patient and vascular access survival. The Vascular Access Specific Quality of life measure (VASQoL) was completed in a contemporary cohort aged ⩾75 years established on HD in October 2021. AVF outcomes were available for 272 patients (93%). The failure to mature (FTM) rate was 36% with the significant predictors of AVF FTM being the creation of a radiocephalic AVF (OR 8.13, 95% CI 8.02-8.52, p < 0.01), female gender (OR 4.84, 95% CI 4.70-5.41, p < 0.01), and a history of peripheral vascular disease (OR 5.25, 95% CI 5.22-6.00, p value = 0.02). Functional patency was associated with a median 12-month survival benefit compared to those whose fistula FTM (p < 0.01). The median patency duration for a functionally patent AVF was 3 years. Elderly patients with a fistula reported a lower quality of life in VASQoL scoring than those with central venous catheters. In this cohort, AVF creation in individuals aged ⩾75 years AVFs was associated with comparable AVF patency rates to younger patients. AVF functional patency was associated with superior patient survival compared to those with AVF FTM. A multi-disciplinary surveillance program may help reduce AVF loss. Further work on how vascular access choice impacts quality of life in elderly patients is required.

Health-related quality of life in women with endometriosis: psychometric validation of the Endometriosis Health Profile 30 questionnaire using confirmatory factor analysis.

STUDY QUESTIONWhich of the competing models of the Endometriosis Health Profile 30 Questionnaire (EHP-30) factor structure is best supported by confirmatory factor analysis (CFA)?SUMMARY ANSWERFindings support a five-factor first-order model of the EHP-30, thereby lending support to the model originally suggested by the questionnaire developers.WHAT IS KNOWN ALREADYEndometriosis has a negative impact on quality of life, and measures specifically developed to address this impact, such as the EHP-30, are vital in research and disease management. Previous studies have found different models of the EHP-30 factor structure, and generated uncertainty regarding how to use the questionnaire. CFA can be applied to compare competing factor models and determine the underlying structure of a questionnaire.STUDY DESIGN, SIZE, DURATIONThis cross-sectional multicenter study included 304 women with endometriosis recruited from three different public health service endometriosis clinics (referral centers for treatment of severe endometriosis) and the Danish Endometriosis Patients Association from 2014 to 2015.PARTICIPANTS/MATERIALS, SETTING, METHODSDiagnosis of endometriosis was confirmed in medical records for 84.2% and by histology for 66.8% of participants. Questionnaires (the licensed Danish version of the EHP-30) were sent by post two times with a 6- to 12-week interval. CFA was used to examine construct validity and Bland–Altman plots to examine test–retest reliability and the convergent validity with the Short Form 36 version 2.MAIN RESULTS AND THE ROLE OF CHANCEResponse rate was high (87.6%). CFA supported the original first-order five-factor structure of the EHP-30, and thereby, the use of five separate scale-scores in clinical and research practice. Visual inspection of Bland–Altman plots suggested excellent test–retest reliability of the EHP-30 and supported the use of a disease specific quality of life instrument for women with endometriosis.LIMITATIONS, REASONS FOR CAUTIONDiagnosis could not be confirmed through histology data in 33.2% of participants. However, subgroup analyses based on women with confirmed histology only, yielded similar results. Data related to menstrual cycle stage and the use of hormonal and pain medication during questionnaire completion were not collected. A larger study, including data from different countries on different continents, would be better designed to exclude potential population bias.WIDER IMPLICATIONS OF THE FINDINGSEHP-30, with its original five-factor structure, appears to be a valid, stable, and specific quality of life measure for women with endometriosis. It seems easy to understand, quick to administer, and importantly, scoring might be unaffected by cyclical/menstrual pain symptoms related to endometriosis. The finding of a five-factor model from different studies across several countries supports the crosscultural validity of the EHP-30.STUDY FUNDING/COMPETING INTEREST(S)This work was supported by the Danish Endometriosis Association, which is a nongovernmental organization run by women with endometriosis and by a scholarship from the Health Research Fund of Central Denmark Region. The authors have no conflicts of interest.TRIAL REGISTRATION NUMBERThe Danish Data Protection Agency (J.nr: 2013-41-2264).

Validation of a vascular access specific quality of life measure (VASQoL).

A self-administered 11 item vascular access specific quality of life measure (VASQoL) was previously derived from detailed qualitative interviews with adult patients with kidney failure who have experienced vascular access using the Capabilities Approach as a theoretical base. This study reports the psychometric validation of the VASQoL measure including its reliability, content validity and responsiveness to change. Cognitive interviews were conducted with 23 adult patients with kidney failure after completion of the VASQoL measure. Focus group discussion with a vascular access professional multidisciplinary team was undertaken (n = 8) and subsequently a further 101 adult kidney failure patients with vascular access (TCVC, AVF or AVG) completed the digital VASQoL measure, EQ-5D and SF-36 questionnaires in a longitudinal study with prospectively recorded vascular access events. Transcript analysis of cognitive interviews after VASQoL completion indicated that the content was comprehensive and well understood by participants. Assessment of Internal reliability for the VASQoL measure was high (Cronbach's alpha 0.858). Test-retest reliability of the overall VASQoL measure was high (intra class correlation coefficient 0.916). In those patients who experienced a vascular access event, significant differences were observed in paired analysis of the VASQoL physical domain questions and vascular access function domain questions and in the EQ-5D usual activities, pain and anxiety domains. In those with no vascular access event, variation was observed in longitudinal analysis in VASQoL questions relating to worry about VA function and capability domains, whilst no variation was observed in the EQ5D measure. The VASQoL measure has good internal consistency, test-retest reliability, convergent validity and responsiveness to change for clinically relevant vascular access outcomes. This provides a validated, vascular access specific quality of life measure that can be used in future trials of vascular access, evaluation of new technologies and routine use as a patient reported outcome measure (PROM).

4580 Development of a play-based coaching intervention to improve quality of life and wellbeing for mothers with cancer and their young children

OBJECTIVES/GOALS: Mothers with cancer who have young children experience life disruptions when treatment procedures limit mother-child interactions. This study proposes the development of an intervention combining the Coaching approach with the Model of Playfulness to improve Quality of Life (QoL) and wellbeing of these patients and their young children. METHODS/STUDY POPULATION: This embedded mixed method study will be guided by the two initial phases of the ORBIT Model for the development of behavioral interventions for patients with chronic diseases. Participants will be mothers in the post-acute treatment stage of cancer (n = 6) and their children who are between 2 years and a half and 6 years, 11 months. Phase 1A, Definition, builds on qualitative data from a concurrent study exploring the experiences of mothers with cancer playing with their young children. As part of this phase, we will develop a play-based coaching intervention. In Phase 1B, Refinement, we will employ in-depth semi-structured interviews and standardized tools to evaluate acceptability of the intervention and preliminary outcomes. This will serve to further refine the intervention. RESULTS/ANTICIPATED RESULTS: Phase 1A will yield a plan for the intervention and data to enhance its initial implementation. Phase 1B will yield data, from the perspective of the mothers, about acceptability of the intervention procedures (e.g., delivery strategy, place for the intervention, time devoted, and outcome measures). This will enable modifications to the intervention. Additionally, Phase IB will yield preliminary data from specific QoL and wellbeing measures. For the mother, data about anxiety and depression symptoms, stress levels, and parental self-efficacy; for the child, emotional and behavioral indicators; for both: playfulness. DISCUSSION/SIGNIFICANCE OF IMPACT: This study entails the development of an intervention to enhance QoL and wellbeing of mothers with cancer and their children. Play moments as the centerpiece of the intervention, represent an innovative approach. Findings will guide the design of future feasibility studies to advance the development of this outcome driven intervention.

Relationship Between Disease Specific Quality of Life Measures, Physical Performance, and Activity in People with Intermittent Claudication Caused by Peripheral Artery Disease

The aims of this study were firstly to assess the correlation between disease specific measures of quality of life (QOL) and physical performance and activity, and secondly to identify demographic, clinical, functional, and physical activity measures independently associated with QOL in people with intermittent claudication. This was a cross sectional observational study of 198 people with intermittent claudication caused by peripheral artery disease who were recruited prospectively. QOL was assessed with the intermittent claudication questionnaire (ICQ) and the eight-theme peripheral artery disease quality of life questionnaire. Physical performance was assessed with the six minute walk test (6MWT) and short physical performance battery (SPPB), and an accelerometer was used to measure seven day step count. The associations between QOL scores and 6MWT distance, SPPB scores and seven day step count were examined using Spearman Rho's (ρ) correlation and multivariable linear regression. ICQ scores were significantly correlated with 6MWT distance (ρ=0.472, p<.001), all four SPPB scores (balance ρ=0.207, p=.003; gait speed ρ=0.303, p<.001; chair stand ρ=0.167, p=.018; total ρ=0.265, p<.001), and seven day step count (ρ=0.254, p<.001). PADQOL social relationships and interactions (ρ=0.343, p<.001) and symptoms and limitations in physical functioning (ρ=0.355, p<.001) themes were correlated with 6MWT distance. The 6MWT distance was independently positively associated with ICQ and both PADQOL theme scores (ICQ: B 0.069, p<.001; PADQOL social relationships and interactions: B 0.077, p<.001; PADQOL symptoms and limitations in physical functioning: B 0.069, p<.001). Longer 6MWT distance independently predicted better physical and social aspects of QOL in people with intermittent claudication supporting its value as an outcome measure.

ENDOBRONCHIAL VALVE TREATMENT OF SEVERE EMPHYSEMA IN PATIENTS WITH ALPHA-1 ANTITRYPSIN DEFICIENCY

ENDOBRONCHIAL VALVE TREATMENT OF SEVERE EMPHYSEMA IN PATIENTS WITH ALPHA-1 ANTITRYPSIN DEFICIENCY

Use of Symptoms Scores, Spirometry, and Other Pulmonary Function Testing for Asthma Monitoring.

Asthma is a global problem affecting millions of people all over the world. Monitoring of asthma both in children and in adulthood is an indispensable tool for the optimal disease management and for the maintenance of clinical stability. To date, several resources are available to assess the asthma control, first is the monitoring of symptoms, both through periodic follow-up visits and through specific quality of life measures addressed to the patient in first person or to parents. Clinical monitoring is not always sufficient to predict the risk of future exacerbations, which is why further instrumental examinations are available including lung function tests, the assessment of bronchial hyper-reactivity and bronchial inflammation. All these tools may help in quantifying the future risk for each patient and therefore they potentially may change the natural history of asthmatic disease. The monitoring of asthma in children as in adults is certainly linked by many aspects, however the asthmatic child is a future asthmatic adult and it is precisely during childhood and adolescence that we should implement all the efforts and strategies to prevent the progression of the disease and the subsequent impairment of lung function. For these reasons, asthma monitoring plays a crucial role and must be particularly close and careful. In this paper, we evaluate several tools currently available for asthma monitoring, focusing on current recommendations emerging from various guidelines and especially on the differences between the monitoring in pediatric age and adulthood.

Prognostic Accuracy of Three COPD Classification Systems in Relation to Long-Term Mortality of COPD Patients: A Prospective Multicenter Study

Recent research showed group B patients express higher mortality compared to group C patients when GOLD A-D grouping is used. We aimed to compare the prognostic accuracy of three GOLD classification systems, I-IV ("pre-2011"), A-D ("2011-2016") and A-D ("2017-present") in relation to mortality, exacerbation risk, quality of life (QoL) assessment and specific treatments use in a real-life COPD cohort. We used the data of 720 patients from the Czech Multicenter Research Database of COPD. Four-year mortality and time-to-exacerbation using the GOLD "pre-2011", "2011-2016" and "2017-present" classification schemes were assessed. Moreover, distribution of specific treatments use and QoL measures were analyzed. The GOLD I-IV classification system showed gradual increase in 4-year mortality across the stages (GOLD II 18.8%, III 28.5%, IV 38.7%) (p = 0.001). Using the A-D "2011-2016" classification scheme, group C patients had lower mortality (16.7%) than group B (18.7%) (p = 0.009). The A-D "2017-present" classification showed higher mortality in group B (25.5%) compared to group C (20%) (p = 0.05). For additional outcomes, the GOLD I-IV scheme showed highest match between the calculated 4-year exacerbation risk and QoL measures and GOLD stage/grouping. In terms of specific treatment distributions, various patterns for each GOLD classification system were observed with best match of GOLD "2017-present" system to the layout of GOLD groups and categories. We conclude the GOLD I-IV classification system had the highest accuracy related to mortality, QoL measures and exacerbation risk prediction, while the A-D "2017-present" scheme was most accurate within severity of symptoms prediction reflected also by more frequent specific treatments use.

Development and validation of the Cholinergic Urticaria Quality-of-Life Questionnaire (CholU-QoL).

Cholinergic urticaria (CholU), a common form of chronic inducible urticaria, is characterized by itchy weals that occur in response to physical exercise or passive warming. CholU patients frequently exhibit a high burden of disease. As of yet, no specific instrument is available to assess their disease-related quality-of-life (QoL) impairment. The aim of this study was to develop and validate the first disease-specific QoL instrument for CholU patients, the Cholinergic Urticaria Quality-of-Life Questionnaire (CholU-QoL). Using a combined approach of the literature search, semistructured patient interviews and expert opinion, we developed 96 potential CholU-QoL items. Subsequent item selection was performed by means of impact analysis complemented by an expert review for face validity. The resulting final CholU-QoL was then tested for levels of validity, reliability and influence factors in 88 CholU patients. In parallel, an US American-Canadian English version of the CholU-QoL was developed. The final 28-item CholU-QoL was found to have a 5-domain structure ("symptoms," "functional life," "social interaction," "therapy," "emotions") with excellent internal consistency. The CholU-QoL also showed a valid total score, and good levels of convergent validity, known-groups validity, as well as test-retest reliability. Multiple regression analysis found no significant drivers of the CholU-QoL total score. The CholU-QoL is the first disease-specific QoL instrument for CholU and also the first specific QoL measure in the field of chronic inducible urticarias. It may serve as a valuable tool for clinical trials and improve routine patient management.

Development of an osteogenesis imperfecta specific quality of life measure

Osteogenesis Imperfecta (OI) is a hereditary disorder effecting approximately 1 in 20,000 births. Symptoms include; low bone mass, recurrent fractures, varying degrees of short stature and deformity. There is currently no disease specific quality of life (QoL) measure for children with OI. This study uses a mixed methods approach to develop a QoL measure for the paediatric OI population. Patient reported outcome measure development is an iterative process, moving back and forth between concept elicitation, questionnaire development, pre-testing and psychometric analysis. In order to encourage a balance between good content validity, alongside promoting a robust, reliable and responsive measure, the methods chosen involved several stages: • Literature review to ensure no suitable QoL measure already existed and to begin eliciting themes. • Interview and focus groups with the target population to uncover relevant concepts, develop a conceptual framework and subsequently validate themes. • Questionnaire development; transforming themes into items, using the children’s’ language to ensure high content validity and acceptability. • Pre-testing the instrument alongside a sample of the OI population, making revisions as required. • Psychometric evaluation to assess validity, reliability and responsiveness of the questionnaire, informing potential item elimination and revision of the measure. Interviews and focus groups with the target population uncovered six main themes when describing QoL in children with OI; being safe and careful, reduced function, pain, fear, independence and isolation. These themes and related sub themes informed the development of the conceptual framework, which alongside the children’s own thematic based quotes, was used to develop the OIQoL. Pre-testing of the OIQoL highlighted logistical issues and understanding, which lead to revisions of the initial version. The final version underwent field testing; concerns around construct validity and internal consistency reliability highlighted the need to undertake further psychometric techniques on a larger cohort prior to item elimination.

Abstract 055: Changes in Disease-specific versus Generic Health Status Measures After Left Ventricular Assist Device Implantation: Insights From INTERMACS

Background: The effects of left ventricular assist device (LVAD) therapy on quality of life (QoL) are typically assessed with a combination of heart failure (HF)-specific and generic QoL measures. A generic QoL measure is believed to be necessary to fully capture the QoL effects of LVADs, as non-cardiac factors, such as comorbidities or LVAD complications, may limit generic QoL despite improvement in HF QoL after LVAD. However, the frequency and drivers of this expected discrepancy between HF-specific and generic QoL measures after LVAD implant are not known. Methods: Patients who underwent LVAD implantation as part of the INTERMACS registry from 2012-14 were assessed prior to and 6 months after LVAD with the Kansas City Cardiomyopathy Questionnaire (KCCQ) and EQ-5D Visual Analog Scale (VAS) to measure HF-specific and generic QoL, respectively. Scores range from 0-100, and ~5 points indicates a clinically relevant change for both measures. Changes in scores were standardized by dividing by the standard deviation of the corresponding baseline score and were categorized as: &lt;0 (worsening), 0 to &lt;0.5 (small improvement), 0.5 to &lt;1 (moderate improvement), and ≥1 (large improvement). Discordance was defined as a ≥2-category difference in standardized changes. Among patients who reported improvement in HF-QoL, multivariable logistic regression was used to examine factors associated with KCCQ-VAS discordance. Results: Among 1888 patients, the majority reported improvement in both HF-specific and generic QoL after LVAD, with mean changes in the KCCQ of 32.7 ± 25.0 and in the VAS of 27.6 ± 27.4. Among the 1539 patients (81.5%) with moderate/large improvement in KCCQ, 334 (21.7%) had discordant changes in generic QoL (i.e., VAS did not substantially increase despite improvement in KCCQ). In multivariable modeling, baseline VAS scores were the strongest predictor of future KCCQ-VAS discordance (OR 2.17 per +10 VAS, 95% CI 1.98-2.38). Post-LVAD complications were not associated with discordance. Conclusion: In a multicenter cohort of patients undergoing LVAD implant, most patients had substantial improvements in both CHF-specific and generic QoL. Discordance occurred in only ~1/5 of patients and was primarily observed among patients who reported good generic QoL prior to their LVAD (despite low KCCQ). Contrary to our expectations, non-cardiac comorbidities and LVAD complications were not associated with discordance. These results support the continued use of the KCCQ to monitor QoL before and after LVAD implantation but also highlight potential limitations of the VAS in fully capturing the QoL effects from LVADs.

General and Disease-specific Scales in Children with Asthma and their Parents.

To investigate and compare the efficiency of general and disease-specific life quality scales in children with asthma. Children with asthma, and their parents completed the Childhood Asthma Control Test (C-ACT), Pediatric Asthma Quality of Life Questionnaire (PAQLQ), Pediatric Quality of Life Inventory (PedsQL), and also underwent spirometry. 82 children (55 males) with a median (IQR) age of 10.1 (8.9-10.5) years were included. C-ACT, PAQLQ and PedsQL child scores were significantly higher in children with controlled asthma. Quality of life in children, assessed using disease- specific quality of life measures, is better for children with good asthma control.

Development of an osteogenesis imperfecta (OI) specific quality of life measure (OIQoL)

Development of an osteogenesis imperfecta (OI) specific quality of life measure (OIQoL)

Assessment of the construct validity and responsiveness of preference-based quality of life measures in people with Parkinson’s: a systematic review

Generic preference-based quality of life (PbQoL) measures are sometimes criticized for being insensitive or failing to capture important aspects of quality of life (QoL) in specific populations. The objective of this study was to systematically review and assess the construct validity and responsiveness of PbQoL measures in Parkinson's. Ten databases were systematically searched up to July 2015. Studies were included if a PbQoL instrument along with a common Parkinson's clinical or QoL measure was used, and the utility values were reported. The PbQoL instruments were assessed for construct validity (discriminant and convergent validity) and responsiveness. Twenty-three of 2758 studies were included, of which the majority evidence was for EQ-5D. Overall good evidence of discriminant validity was demonstrated in the Health Utility Index (HUI)-3, EQ-5D-5L, EQ-5D-3L, 15D, HUI-2, and Disability and Distress Index (DDI). Nevertheless, HUI-2 and EQ-5D-3L were shown to be less sensitive among patients with mild Parkinson's. Moderate to strong correlations were shown between the PbQoL measures (EQ-5D-3L, EQ-5D-5L, 15D, DDI, and HUI-II) and Parkinson's-specific measures. Twelve studies provided evidence for the assessment of responsiveness of EQ-5D-3L and one study for 15D, among which six studies reached inconsistent results between EQ-5D-3L and the Parkinson's-specific measures in measuring the change overtime. The construct validity of the PbQoL measures was generally good, but there are concerns regarding their responsiveness to change. In Parkinson's, the inclusion of a Parkinson's-specific QoL measure or a generic but broader scoped mental and well-being focused measure to incorporate aspects not included in the common PbQoL measures is recommended.

Establishing equivalence of a Chinese version of the stroke specific quality of life measure for stroke survivors

Introduction: The Stroke Specific Quality of Life Scale is a stroke-specific measure of health-related quality of life. However, there has been no Chinese (Hong Kong) version of the scale.Methods: A descriptive study was conducted to examine the reliability, validity and factor structure of the translated version (SSQOL-C) among stroke survivors. Participants completed SSQOL-C, and the Chinese versions of the Medical Outcomes Study Short-Form Health Survey (SF-36), Stroke Self-Efficacy Questionnaire (SSEQ-C) and Frenchay Activities Index (FAI). Thirty of these participants completed the same questionnaires after 4 weeks.Results: A total of 135 stroke survivors (mean age 58.90 ± 9.75) were recruited. SSQOL-C had good internal consistency with Cronbach’s alphas for each domain ranging from 0.63 to 0.90. Most domains had moderate to high correlations with similar dimensions of SF-36, SSEQ-C, FAI and Barthel ADL Index total scores (Spearman’s rho: 0.40–0.77, p < 0.01), suggesting acceptable convergent validity. Principal component analyses suggested an 11-factor model in contrast to the 12-factor model for the original scale with six new factors emerging and five original factors retained.Discussion: The results suggest SSQOL-C is a reliable and valid tool for measuring Chinese stroke survivors’ health-related quality of life. More studies are needed to confirm the 11-factor model of the scale.Implications for rehabilitationThe translated Chinese version of the Stroke Specific Quality of Life Scale is a reliable and valid tool for measuring Chinese stroke survivors’ health-related quality of life.An 11-factor model in contrast to the 12-factor model for the original scale with six new factors emerging and five original factors retained.

Abstract W MP102: Development and Validation of a Short Form for the Stroke Impact Scale

Introduction: The Stroke Impact Scale (SIS) is an eight domain (59 item) stroke specific quality of life measure. A short form of SIS (SF-SIS) has been proposed but requires independent validation. Methods: We used patient-level data contained in the Virtual International Stroke Trial Archive (VISTA). SIS was available for rehabilitation settings, a modified scale SIS-16 was predominantly used in acute settings. For both groups we extracted and standardised clinical and demographic data. We derived a short form index (SIS-VISTA) by selecting 8 items, one per domain; choosing those items most highly correlated with total domain score. Validation compared short forms with SIS/SIS-16 (Cronbach’s alpha) and other outcomes as available:Barthel Index; EQ-5D; visual analogue scale (VAS); mRS; NIHSS (correlation). Results: Acute data comprised n=5549 (603 intracerebral haemorrhage [ICH]) mean age:68.5 (SD:13); mean SIS:64 (SD:32). SIS-VISTA items agreed with SF-SIS for all available domains other than communication. Results did not differ in analyses restricted to ICH. Rehabilitation data, n=332 (mean age 65.7 [SD:11]; mean SIS:61 [SD:11]) preferred SIS-VISTA items agreed with SF-SIS for all domains except communication, ADL and mobility. Where items did not match differences in correlation were minimal. Short forms demonstrated good agreement with SIS and correlation with other metrics of interest (table). Conclusions: Using multiple approaches we have validated SIS short forms. There was no significant difference between existing SF-SIS and SIS-VISTA and we would encourage researchers to use SF-SIS to allow collection of robust quality of life data with less associated test burden.