Capturing the experiences of patients with inherited optic neuropathies: a systematic review of patient-reported outcome measures (PROMs) and qualitative studies

Purpose To identify and comprehensively evaluate studies capturing the experience of individuals affected by an inherited optic neuropathy (ION), focusing on patient-reported outcome measures (PROMs) and qualitative studies where the health status and quality of life (QoL) of these individuals have been explored. Methods Systematic review of five databases using a search strategy combining four concepts: (1) ION; (2) QoL and health status; (3) PROMs; and (4) qualitative research. Studies assessing the impact of ION on any QoL domain using a PROM or qualitative methodology were included and appraised, using criteria based on the COSMIN checklist (for PROM studies) and the CASP checklist (for qualitative studies). Results Of 1326 unique articles identified, six studies were included. Five PROMs were identified: Visual Function Index (VF-14); Hospital Anxiety and Depression Scale (HADS); a novel graphical online assessment tool (NGOAT) for reporting emotional response to vision loss; a new PROM informed by the DSM-V Criteria for Major Depressive Disorder; and an interpersonal and career ‘impact rating’ PROM. The psychometric performance of included PROMs were poorly described. Qualitative studies found that vision loss resulted in psychosocial losses including loss of social and communication skills and loss of independence and freedom. Factors that modified the response to vision loss were also identified. Conclusion The current PROMs used by individuals with ION have poor content coverage, primarily measuring activity limitation and emotional well-being, and insufficient reporting of psychometric performance. There is a need to develop a PROM for individuals ION to report their experiences of living with their condition.

Adding a fatigue item to the EQ-5D-5L improves its psychometric performance in the general population

Background Fatigue is a common and often disturbing sequela of serious chronic health conditions. In the widely applied HRQL instrument, the EQ-5D, this aspect is not included directly, for its assumed lack of additional information. We investigated the validity of this assumption by determining the gain—if any—of an additional fatigue item to the EQ-5D-5L in a general population sample. Methods A Dutch general population sample (including diseased people) completed a web-based survey including the EQ-5D-5L and the Rivermead Post-Concussion Symptoms Questionnaire (RPQ). The RPQ fatigue item was used to create the EQ-5D-5L + Fatigue. We head-to-head compared the psychometric performance contrasting the EQ-5D-5L and EQ-5D-5L + Fatigue: distribution (e.g. ceiling), informativity cf. Shannon's indices, convergent validity, domain dependency, and explanatory power. Results were compared between subgroups with and without ≥ 1 chronic health condition. Results The study population consisted of 3027 persons of whom 52% had a chronic health condition. The mean EQ-5D-5L utility score was 0.83 and 48% experienced some degree of fatigue. Adding the fatigue item to the EQ-5D-5L decreased the ceiling effect, increased absolute informativity (Hʹ = 6.44 vs. Hʹ = 4.90) and relative informativity (Jʹ = 0.46 vs. Jʹ = 0.42). The extra fatigue item slightly increased convergent validity (Spearman’s rank correlation coefficient = − 0.61 vs. − 0.62). Domain dependency analysis showed that all EQ-5D-5L domains are dominant over the fatigue item. Explanatory power of the EQ-5D-5L + Fatigue was higher compared to the EQ-5D-5L (R2 = 0.42 vs. 0.39). The gain is substantially larger in the subgroup with chronic health conditions. Conclusions Adding a fatigue item to the EQ-5D-5L improved all psychometric performance criteria of the enriched instrument in the general population. Effects are substantially larger in the subgroup with chronic health conditions, indicating that adding a fatigue item to the EQ-5D-5L is especially relevant in evaluating the HRQL of diseased people.

Psychometric Performance of Learning Burnout Scale for Undergraduates (LBSU) in Guangdong

To analyze the psychometric performance of Learning Burnout Scale for Undergraduates (LBSU) in Guangdong province． LBSU was used to conduct the survey involing 1628 undergraduates who were selcted with stratified random sampling from 7 colleges in Guangdong province. Cronbach's α coefficient and split-half reliability were used to analyze the internal consistency of the questionnaire．Convergent validity, discriminant validity and factor analysis were used to evaluate its structural validity. Celling and floor effect were used to analyze its sensitivity. Cronbach's α coefficient of the total questionniar was 0.89 and cronbach's α coefficient of 3 dimensions were 0.73-0.78, which met with the requirements of the group comparison. Spearman - Brown split-half coefficient of the total questionniar and 3 dimensions were 0.90, 0.85, 0.81, 0.79, respectively, which also met with the requirements of the group comparison. Both the calibration success rate of convergent validity and discriminant validity of each dimension were 100%. Four components obtained from 20 items which cumulative variance contribution rate was 51.924%. The total score and score of each dimension were all normal distribution, without any floor or celling effect in dimensions. The psychometric performance of LBSU for assessing undergraduates in Guangdong province is valid and reliable．

Psychometric Performance of Resilience Scale for Chinese Adolescent (RSCA) for Undergraduates in Guangdong, China

To analyze the psychometric performance of Resilience Scale for Chinese Adolescent (RSCA) for undergraduates in Guangdong. Stratified random sampling method was used to select 1628 undergraduates from 7 colleges in Guangdong. RSCA and Academic Burnout Scale for Chinese Undergraduates (ABSCU) were used to investigate them. Cronbach's αcoefficient and split-half reliability were used to analyze the internal consistency of RSCA. Convergent validity, discriminant validity, factor analysis and criterion validity were used to evaluate its validity. Celling and floor effect were used to analyze its sensitivity. Cronbach's α coefficient of the total questionniar, 2 domains and 5 factors were0.72-0.86, which met the requirements of the group comparison. Spearman-Brown split-half coefficient of the total questionniar, 2 domains and 5 factors were 0.71-0.89. The calibration success rate of convergent and discriminant validity of 5 factors were all 100%. The calibration success rate of convergent and discriminant validity of 2 domains were all above 86.7%. Five principal components obtained from 27 items, witha cumulative variance contribution rate of48.79% and two principal components obtained from 5 factors, withacumulative variance contribution rateof 65.23%,which basically metthe theoretical conception of RSCA. The total score of RSCA significantly predicted the total score of ABSCU (Radj2=0.158, P<0.001). The total score, scores of 2 domains and 5 factors of RSCA were all normal distribution, without any celling or floor effect. The psychometric performance of RSCA for undergraduates in Guangdong were valid and reliable.

Psychometric Performance of HRQoL Measures: An Australian Paediatric Multi-Instrument Comparison Study Protocol (P-MIC)

Background: There is a lack of psychometric evidence about pediatric health-related quality of life (HRQoL) instruments. Evidence on cost effectiveness, involving the measurement of HRQoL, is used in many countries to make decisions about pharmaceuticals, technologies, and health services for children. Additionally, valid instruments are required to facilitate accurate outcome measurement and clinical decision making. A pediatric multi instrument comparison (P-MIC) study is planned to compare the psychometric performance and measurement characteristics of pediatric HRQoL instruments. Methods: The planned P-MIC study will collect data on approximately 6100 Australian children and adolescents aged 2–18 years via The Royal Children’s Hospital Melbourne and online survey panels. Participants will complete an initial survey, involving the concurrent collection of a range of pediatric HRQoL instruments, followed by a shorter survey 2–8 weeks later, involving the collection of a subset of instruments from the initial survey. Children aged ≥7 years will be asked to self-report HRQoL. Psychometric performance will be assessed at the instrument, domain, and item level. Conclusions: This paper describes the methodology of the planned P-MIC study, including benefits, limitations, and likely challenges. Evidence from this study will guide the choice of HRQoL measures used in clinical trials, economic evaluation, and other applications.

Psychometric characteristics of DLQI-BRA and Skindex-16 to measure the impact of dermatological diseases on quality of life in Brazilian patients

Objective To compare the psychometric performance of the Dermatology Life Quality Index (DLQI-BRA) and Skindex-16 to assess quality of life (QoL) in Brazilian patients with dermatological diseases. Methods This was a cross-sectional study carried out in a dermatology outpatient clinic of the São Paulo State University, with 188 patients with dermatological diseases. QoL was evaluated using the Dermatology Life Quality Index (DLQI-BRA) and Skindex-16. Cronbach’s alpha and Intraclass Correlation for Perfect Concordance (ICC) were used to analyse the reliability and temporal stability, respectively. Results A positive correlation was found between the total Skindex-16 score and DLQI-BRA (0.75). Both instruments showed a significant (p< 0.01) reduction in their scores at the second assessment, demonstrating that they were sensitive in detecting changes in responsiveness in cases where there was a clinical change. Cronbach alpha coefficients for the instruments showed satisfactory performance (>0,7), but Skindex-16 displayed the highest Cronbach alpha (0.94; CI = 0.93–0.95). Conclusion Both instruments tested showed a good psychometric performance assessing QoL in patients with skin dermatoses. The instruments displayed reliability and temporal stability as well as responsiveness.

Psychometric Comparison of the Performance of Quality of Life Assessment Instruments in Dermatology—the DLQI, Skindex-16, and Skindex-17—in a Brazilian Population.

Background: The DLQI (Dermatology Life Quality Index) is the most commonly used instrument for evaluating the quality of life in dermatology. Skindex was developed as a multidimensional instrument with successive versions published, the most recent being Skindex-16 and Skindex-17, both derived from Skindex-29 through different techniques. This study aimed to compare the three instruments—the DLQI, Skindex-16, and Skindex-17—according to their psychometric performance to refine the assessment of the quality of life among dermatological patients.Methods: A methodological study compared the psychometric performance of the DLQI, Skindex-16 (Sk-16), and Skindex-17 (Sk-17) instruments among adults with dermatoses that were classified according to characteristic physical symptoms and psychological or social domains. Analyses were performed to assess internal consistency, correlation, test-retest reproducibility, and responsiveness according to classical psychometry and to test discrimination and difficulty according to the item response theory.Results: The sample consisted of 229 patients predominantly women (71%) of adult age (average 45 years) and intermediate phototypes (III and IV = 73%). The analyses of internal consistency for the instruments resulted in Cronbach-α coefficients >0.80. There was adequate test-retest reproducibility and responsiveness for all dimensions of the instruments. The IRT (Iten Response Theory) analysis indicated adequate ordering and discrimination (a >1.0) for all items of the DLQI, Sk-16, and Sk-17; four items of Sk-16 did not adequately adhere to the TRI model (p <0.01 ). The items with the greatest discrimination were q3 (domestic activities) and q5 (leisure activities) in the DLQI; F2 (desire to be with people) and E6 (annoyance) in Sk-16; and S4 (irritated skin), P5 (relationship), and P6 (autonomy of tasks) in Sk-17. The Sk-16 and Sk-17 instruments presented more items that registered mild impacts on the quality of life (b <-0.5).Conclusions: The DLQI, Sk-16, and Sk-17 presented adequate psychometric performance for the assessment of health-related quality of life in a Brazilian sample. The multidimensional instruments (Sk-16 and Sk-17) were more sensitive to mild impacts on quality of life.

Understanding measures of racial discrimination and microaggressions among American Indian and Alaska Native college students in the Southwest United States

Background Racial discrimination, including microaggressions, contributes to health inequities, yet research on discrimination and microaggressions has focused on single measures without adequate psychometric evaluation. To address this gap, we examined the psychometric performance of three discrimination/microaggression measures among American Indian and Alaska Native (AI/AN) college students in a large Southwestern city. Methods Students (N = 347; 65% female; ages 18–65) completed the revised-Everyday Discrimination Scale, Microaggressions Distress Scale, and Experiences of Discrimination measure. The psychometric performance of these measures was evaluated using item response theory and confirmatory factor analyses. Associations of these measures with age, gender, household income, substance use, and self-rated physical health were examined. Results Discrimination and microaggression items varied from infrequently to almost universally endorsed and each measure was unidimensional and moderately correlated with the other two measures. Most items contributed information about the overall severity of discrimination and collectively provided information across a continuum from everyday microaggressions to physical assault. Greater exposure to discrimination on each measure had small but significant associations with more substance use, lower income, and poorer self-rated physical health. The Experiences of Discrimination measure included more severe forms of discrimination, while the revised-Everyday Discrimination Scale and the Microaggressions Distress Scale represented a wider range of severity. Conclusions In clinical practice, these measures can index varying levels of discrimination for AI/ANs, particularly for those in higher educational settings. This study also informs the measurement of racial discrimination and microaggressions more broadly.

Patient-Reported Experience Measures in Stroke Care

Background and Purpose: Patient-reported experience measures (PREMs) assess patients’ perception of health care. We aimed to identify all reported PREMs for stroke care and critically appraise psychometric properties of PREMs validated for patients with stroke. Methods: Studies on the development, validation, or utilization of PREMs for adult patients with stroke were systematically identified. The Consensus-Based Standards for the Selection of Health Measurement Instruments criteria were used to appraise psychometric performance. Results: We included 18 studies, examining 13 PREMs. Two PREMs had been developed for stroke care: Consumer Quality Index: Cerebrovascular Accident and Riksstroke. Consumer Quality Index: Cerebrovascular Accident was given a positive psychometric assessment, but its length and limited language applicability impede clinical implementation. Riksstroke was appraised as doubtful. Eleven PREMs were generic. The psychometric performance of 5 generic PREMS, validated for patients with stroke, received conflicting assessments. Six generic PREMs had not been validated in patients with stroke and were therefore not assessed for instrument performance. Conclusions: Thirteen PREMs have been published for use in stroke care. The stroke-specific Consumer Quality Index: Cerebrovascular Accident has favorable psychometric performance but lacks practical feasibility. Other PREMs have inadequate or unknown psychometric properties. This indicates the need for developing stroke-specific PREMs to support quality improvement and enhance patient-centered care.