Establishing the thematic framework for a diabetes-specific health-related quality of life item bank for use in an english-speaking asian population.
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ABSTRACT:
SUBMITTER: Koh O
PROVIDER: S-EPMC4274102 | biostudies-other | 2014
REPOSITORIES: biostudies-other
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Project description:OBJECTIVES:Functional outcomes following cochlear implantation have traditionally been focused on word and sentence recognition, which, although important, do not capture the varied communication and other experiences of adult cochlear implant (CI) users. Although the inadequacies of speech recognition to quantify CI user benefits are widely acknowledged, rarely have adult CI user outcomes been comprehensively assessed beyond these conventional measures. An important limitation in addressing this knowledge gap is that patient-reported outcome measures have not been developed and validated in adult CI patients using rigorous scientific methods. The purpose of the present study is to build on our previous work and create an item bank that can be used to develop new patient-reported outcome measures that assess CI quality of life (QOL) in the adult CI population. DESIGN:An online questionnaire was made available to 500 adult CI users who represented the adult CI population and were recruited through a consortium of 20 CI centers in the United States. The questionnaire included the 101 question CIQOL item pool and additional questions related to demographics, hearing and CI history, and speech recognition scores. In accordance with the Patient-Reported Outcomes Measurement Information System, responses were psychometrically analyzed using confirmatory factor analysis and item response theory. RESULTS:Of the 500 questionnaires sent, 371 (74.2%) subjects completed the questionnaire. Subjects represented the full range of age, durations of CI use, speech recognition abilities, and listening modalities of the adult CI population; subjects were implanted with each of the three CI manufacturers' devices. The initial item pool consisted of the following domain constructs: communication, emotional, entertainment, environment, independence, listening effort, and social. Through psychometric analysis, after removing locally dependent and misfitting items, all of the domains were found to have sound psychometric properties, with the exception of the independence domain. This resulted in a final CIQOL item bank of 81 items in 6 domains with good psychometric properties. CONCLUSIONS:Our findings reveal that hypothesis-driven quantitative analyses result in a psychometrically sound CIQOL item bank, organized into unique domains comprised of independent items which measure the full ability range of the adult CI population. The final item bank will now be used to develop new instruments that evaluate and differentiate adult CIQOL across the patient ability spectrum.
| S-EPMC6749825 | biostudies-literature
Project description:ImportanceNo instrument exists to assess quality of life (QOL) in adult cochlear implant (CI) users that has been developed and validated using accepted scientific standards.ObjectiveTo develop a CI-specific QOL instrument for adults in accordance with the Patient Reported Outcomes Measurement Information System (PROMIS) guidelines.Design, setting, and participantsAs required in the PROMIS guidelines, patient focus groups participated in creation of the initial item bank. Twenty-three adult CI users were divided into 1 of 3 focus groups stratified by word recognition ability. Three moderator-led focus groups were conducted based on grounded theory on December 3, 2016. Two reviewers independently analyzed focus group recordings and transcripts, with a third reviewer available to resolve discrepancies. All data were reviewed and reported according to the Consolidated Criteria for Reporting Qualitative Research. The setting was a tertiary referral center.Main outcomes and measuresCoded focus group data.ResultsThe 23 focus group participants (10 [43%] female; mean [range] age, 68.1 [46.2-84.2] years) represented a wide range of income levels, education levels, listening modalities, CI device manufacturers, duration of CI use, and age at implantation. Data saturation was determined to be reached before the conclusion of each of the focus groups. After analysis of the transcripts, the central themes identified were communication, emotion, environmental sounds, independence and work function, listening effort, social isolation and ability to socialize, and sound clarity. Cognitive interviews were carried out on 20 adult CI patients who did not participate in the focus groups to ensure item clarity. Based on these results, the initial QOL item bank and prototype were developed.Conclusions and relevancePatient focus groups drawn from the target population are the preferred method of identifying content areas and domains for developing the item bank for a CI-specific QOL instrument. Compared with previously used methods, the use of patient-centered item development for a CI-specific QOL instrument will more accurately reflect patient experience and increase our understanding of how CI use affects QOL.
| S-EPMC5710256 | biostudies-literature
Project description:BackgroundPositive mindset (PM) is an important domain of health-related quality of life in Singapore, a multi-ethnic urban city state in Southeast Asia. We therefore developed and calibrated a novel item bank to measure and improve PM.MethodsWe developed an initial candidate pool of 48 items from focus groups, in-depth interviews and existing instruments locally developed and validated for use in Singapore. We administered all items in English to a multi-stage sample stratified for age and gender, of subjects with and without medical conditions recruited from the community and a hospital, and calibrated their responses using Samejima's Graded Response Model. We evaluated a final 36-item bank with respect to Item Response Theory (IRT) model assumptions, model fit, differential item functioning (DIF), concurrent and known-groups validity.ResultsAmong 493 participants (49.3% male, 41.6% above 50 years old, 33% Chinese, Malay and Indian), bifactor model analyses supported unidimensionality: explained common variance of the general factor was 0.86 and omega hierarchical was 0.97. Local independence was deemed acceptable: the average absolute residual correlations were <0.06 and 3.3% of the total item-pair residuals were flagged for local dependence. The overall model fit was adequate and provided good coverage of the PM construct (theta range: -3.6 to +2.4). Five items exhibited DIF with respect to ethnicity and gender, but were retained without modification of scores because they measured important aspects of PM. Scores correlated in the hypothesized direction with a self-reported measure of global health (Spearman's rho = -0.28, p<0.001) and discriminated between groups of participants with and without a self-reported diagnosis of a mood disorder (p = 0.007) adjusting for age, gender, ethnicity, education and marital status.ConclusionThe 36-item PM item bank demonstrated satisfactory psychometric properties for the English-speaking Singaporean population. IRT model assumptions were sufficiently met and scores showed concurrent and known-groups validity. Future studies to evaluate the validity of PM scores when items are administered adaptively are needed.
| S-EPMC6668803 | biostudies-literature
Project description:BackgroundSocial relationships (SR) is an important domain of health-related quality of life. We developed and calibrated a novel item bank to measure SR in Singapore, a multi-ethnic city in Southeast Asia.MethodsWe developed an initial candidate pool of 51 items from focus groups, individual in-depth interviews and existing instruments that had been developed and/or validated for use in Singapore. We administered all items in English to a multi-stage sample of subjects, stratified for age and gender, with and without medical conditions, recruited from community and hospital settings. We calibrated their responses using Samejima's Graded Response Model (SGRM). We evaluated a final 30-item bank with respect to Item Response Theory (IRT) model assumptions, model fit, differential item functioning (DIF), and concurrent and known-groups validity.ResultsAmong 503 participants (47.7% male, 41.4% above 50 years old, 34.0% Chinese, 33.6% Malay and 32.4% Indian), bi-factor model analyses supported essential unidimensionality: explained common variance of the general factor was 0.805 and omega hierarchical was 0.98. Local independence was deemed acceptable: the average absolute residual correlations were < 0.06 and 1.8% of the total item-pair residuals were flagged for local dependence. The overall SGRM model fit was adequate (p = 0.146). Five items exhibited DIF with respect to age, ethnicity and education, but were retained without modification of scores because they measured important aspects of SR. The SR scores correlated in the hypothesized direction with a self-reported measure of global health (Spearman's rho = - 0.28, p < 0.001).ConclusionThe 30-item SR item bank has shown acceptable psychometric properties. Future studies to evaluate the validity of SR scores when items are administered adaptively are needed.
| S-EPMC6505203 | biostudies-literature
Project description:PurposeTo assess the psychometric properties of glaucoma-specific health-related quality of life (HRQoL) item banks (IBs), and explore their efficiency using computerized adaptive testing (CAT) simulations.MethodsIn this cross-sectional, clinical study, 300 Asian glaucoma patients answered 221 items within seven IBs: Ocular Comfort Symptoms (OS); Activity Limitation (AL); Lighting (LT); Mobility (MB); Glaucoma Management (GM); Psychosocial (PSY); and Work (WK). Rasch analysis was conducted to assess each IB's psychometric properties (e.g., item "fit" to the construct; unidimensionality) and a set of analytic performance criteria guiding decision making relating to retaining or dropping domains and items was employed. CAT simulations determined the mean number of items for 'high' and 'moderate' measurement precision (stopping rule: SEM 0.3 and 0.387, respectively).ResultsParticipants' mean age was 67.2 ± 9.2 years (62% male; 87% Chinese). LT, MB, and GM displayed good psychometric properties overall. To optimize AL's psychometric properties, 16 items were deleted due to poor "fit", high missing data, item bias, low discrimination and/or a low clinical/patient importance rating. To resolve multidimensionality in PSY, we rehomed 16 items into a "Concern (CN)" domain. PSY and CN required further amendment, including collapsing of response categories, and removal of poorly functioning items (N = 7). Due to poor measurement precision, low applicability and high ceiling effect, low test information indices, and low item separation index the WK IB was not considered further. In CAT simulations on the final seven IBs (n = 182 items total), an average of 12.1 and 15.7 items per IB were required for moderate and high precision measurement, respectively.ConclusionsAfter reengineering our seven IBs, they displayed robust psychometric properties and good efficiency in CAT simulations. Once finalized, GlauCAT™-Asian may enable comprehensive assessment of the HRQoL impact of glaucoma and associated treatments.
| S-EPMC10147351 | biostudies-literature
Project description:The aims of the present study were to examine whether Asian American youth experience disparities in quality of life (QL) compared with Hispanic, African American, and white youth in the general population and to what extent socioeconomic status (SES) mediates any disparities among these racial/ethnic groups. Data were obtained from the Healthy Passages study, in which 4,972 Asian American (148; 3%), Hispanic (1,813; 36%), African American (1,755; 35%), and white (1,256; 25%) fifth-graders were enrolled in a population-based, cross-sectional survey conducted in three U.S. metropolitan areas. Youth reported their own QL using the PedsQL and supplemental scales. Parents reported youth's overall health status as well as parent's education and household income level. Asian American youth experienced worse status than white youth for three of 10 QL and well-being measures, better status than Hispanic youth on six measures, and better status than African American youth on three measures. However, the observed advantages for Asian American youth over Hispanic and African American youth disappeared when the marked SES differences that are also present among these racial/ethnic groups were taken into account. In contrast, the differences between Asian American and white youth remained after adjusting for SES. These findings suggest that the disparities in QL that favor white youth over Asian American youth exist independent of SES and warrant further examination. In contrast, the QL differences that favor Asian American over Hispanic and African American youth may be partly explained by SES. Interpretations are limited by the heterogeneity existing among Asian Americans.
| S-EPMC4831066 | biostudies-other
Project description:The six divisions of the Cooperative Human Tissue Network in the USA bank and distribute tens of thousands of tissue specimens to researchers annually. Major operational concerns include: maintaining tissue integrity, managing informatics, and protecting patient confidentiality. Increasing molecular genetics testing is also resulting in an increased demand for high-quality nucleic acids.
| S-EPMC2409638 | biostudies-other
Project description:BackgroundLanguage barriers are a large and growing problem for patients in the US and around the world. Interpreter services are a standard solution for addressing language barriers and most research has focused on utilization of interpreter services and their effect on health outcomes for patients who do not speak the same language as their healthcare providers including nurses. However, there is limited research on patients' perceptions of these interpreter services.ObjectiveTo examine Hmong- and Spanish-speaking patients' perceptions of interpreter service quality in the context of receiving cancer preventive services.MethodsTwenty limited English proficient Hmong (n=10) and Spanish-speaking participants (n=10) ranging in age from 33 to 75 years were interviewed by two bilingual researchers in a Midwestern state. Interviews were audio taped, transcribed verbatim, and translated into English. Analysis was done using conventional content analysis.ResultsThe two groups shared perceptions about the quality of interpreter services as variable along three dimensions. Specifically, both groups evaluated quality of interpreters based on the interpreters' ability to provide: (a) literal interpretation, (b) cultural interpretation, and (c) emotional interpretation during the health care encounter. The groups differed, however, on how they described the consequences of poor interpretation quality. Hmong participants described how poor quality interpretation could lead to: (a) poor interpersonal relationships among patients, providers, and interpreters, (b) inability of patients to follow through with treatment plans, and (c) emotional distress for patients.ConclusionsOur study highlights the fact that patients are discerning consumers of interpreter services; and could be effective partners in efforts to reform and enhance interpreter services.
| S-EPMC4592691 | biostudies-literature
Project description:OBJECTIVE:To develop a conceptual framework and preliminary item bank for childbirth-specific patient-reported outcome (PRO) domains. DATA SOURCES:Women, who were U.S. residents, ?18 years old, and ?20 weeks pregnant, were surveyed regarding their childbirth values and preferences (V&P) using online panels. STUDY DESIGN:Using community-based research techniques and Patient-Reported Outcomes Management Information System (PROMIS® ) methodology, we conducted a comprehensive literature review to identify self-reported survey items regarding patient-reported V&P and childbirth experiences and outcomes (PROs). The V&P/PRO domains were validated by focus groups. We conducted a cross-sectional observational study and fitted a multivariable logistic regression model to each V&P item to describe "who" wanted each item. PRINCIPAL FINDINGS:We identified 5,880 V&P/PRO items that mapped to 19 domains and 58 subdomains. We present results for the 2,250 survey respondents who anticipated a vaginal delivery in a hospital. Wide variation existed regarding each V&P item, and personal characteristics, such as maternal confidence and ability to cope well with pain, were frequent predictors in the models. The resulting preliminary item bank consisted of 60 key personal characteristics and 63 V&P/PROs. CONCLUSIONS:The conceptual framework and preliminary (PROMIS® ) item bank presented here provide a foundation for the development of childbirth-specific V&P/PROs.
| S-EPMC6153166 | biostudies-literature
Project description:BackgroundColorectal cancer (CRC) survivors experience difficulty navigating complex care pathways. Sharing care between GPs and specialist services has been proposed to improve health outcomes in cancer survivors following hospital discharge. Culturally and Linguistically Diverse (CALD) groups are known to have poorer outcomes following cancer treatment but little is known about their perceptions of shared care following surgery for CRC. This study aimed to explore how non-English-speaking and English-speaking patients perceive care to be coordinated amongst various health practitioners.MethodsThis was a qualitative study using data from face to face semi-structured interviews and one focus group in a culturally diverse area of Sydney with non-English-speaking and English-speaking CRC survivors. Participants were recruited in community settings and were interviewed in English, Spanish or Vietnamese. Interviews were recorded, transcribed, and analysed by researchers fluent in those languages. Data were coded and analysed thematically.ResultsTwenty-two CRC survivors participated in the study. Participants from non-English-speaking and English-speaking groups described similar barriers to care, but non-English-speaking participants described additional communication difficulties and perceived discrimination. Non-English-speaking participants relied on family members and bilingual GPs for assistance with communication and care coordination. Factors that influenced the care pathways used by participants and how care was shared between the specialist and GP included patient and practitioner preference, accessibility, complexity of care needs, and requirements for assistance with understanding information and navigating the health system, that were particularly difficult for non-English-speaking CRC survivors.ConclusionsBoth non-English-speaking and English-speaking CRC survivors described a blend of specialist-led or GP-led care depending on the complexity of care required, informational needs, and how engaged and accessible they perceived the specialist or GP to be. Findings from this study highlight the role of the bilingual GP in assisting CALD participants to understand information and to navigate their care pathways following CRC surgery.
| S-EPMC6066922 | biostudies-literature