Developing Children's Oral Health Assessment Toolkits Using Machine Learning Algorithm.

OBJECTIVES: Evaluating children's oral health status and treatment needs is challenging. We aim to build oral health assessment toolkits to predict Children's Oral Health Status Index (COHSI) score and referral for treatment needs (RFTN) of oral health. Parent and Child toolkits consist of short-form survey items (12 for children and 8 for parents) with and without children's demographic information (7 questions) to predict the child's oral health status and need for treatment. METHODS: Data were collected from 12 dental practices in Los Angeles County from 2015 to 2016. We predicted COHSI score and RFTN using random Bootstrap samples with manually introduced Gaussian noise together with machine learning algorithms, such as Extreme Gradient Boosting and Naive Bayesian algorithms (using R). The toolkits predicted the probability of treatment needs and the COHSI score with percentile (ranking). The performance of the toolkits was evaluated internally and externally by residual mean square error (RMSE), correlation, sensitivity and specificity. RESULTS: The toolkits were developed based on survey responses from 545 families with children aged 2 to 17 y. The sensitivity and specificity for predicting RFTN were 93% and 49% respectively with the external data. The correlation(s) between predicted and clinically determined COHSI was 0.88 (and 0.91 for its percentile). The RMSEs of the COHSI toolkit were 4.2 for COHSI (and 1.3 for its percentile). CONCLUSIONS: Survey responses from children and their parents/guardians are predictive for clinical outcomes. The toolkits can be used by oral health programs at baseline among school populations. The toolkits can also be used to quantify differences between pre- and post-dental care program implementation. The toolkits' predicted oral health scores can be used to stratify samples in oral health research. KNOWLEDGE TRANSFER STATEMENT: This study creates the oral health toolkits that combine self- and proxy- reported short forms with children's demographic characteristics to predict children's oral health and treatment needs using Machine Learning algorithms. The toolkits can be used by oral health programs at baseline among school populations to quantify differences between pre and post dental care program implementation. The toolkits can also be used to stratify samples according to the treatment needs and oral health status.

Child and Parent Demographic Characteristics and Oral Health Perceptions Associated with Clinically Measured Oral Health.

OBJECTIVE: To examine child and parent reports about the child's oral health and assess the associations of these reports with clinical assessments of oral health status by dental examiners. METHODS: Surveys with 139 items for children and 133 items for parents were administered by Audio Computer-Assisted Self-Interview Software. In addition, the Children's Oral Health Status Index (COHSI) was computed from a dental examination. RESULTS: A total of 334 families with children ages 8 to 17 y participated at 12 dental practices in Los Angeles County. Ordinary least squares regression models were estimated separately for child and parent surveys to identify items uniquely associated with the COHSI. Ten of 139 items the children reported regarding their oral health were associated with the COHSI. The strongest associations were found for child's age, aesthetic factors (straight teeth and pleased with teeth), and cognitive factors related to perception of dental appearance (pleased/happy with the look of the child's mouth, teeth, and jaws). Nine of 133 parent items about the child's oral health were associated with the COHSI in the parent model, notably being a single parent, parent's gender, parent born in the United States, pleased or happy with the look of their child's teeth, and accessing the Internet. CONCLUSION: These child and parent survey items have potential to be used to assess oral health status for groups of children in programs and practices in lieu of dental screenings. KNOWLEDGE TRANSLATION STATEMENT: The paper's results inform the development of a toolkit that can be used by schools, public health agencies, and dental programs to identify children with low oral health status based on parents' and children's responses to survey items across demographic, physical, mental, and social domains. These survey items can be used to inform parents of the desirability of proactively addressing inadequacies in their child's oral health status, enabling them to more rationally address dental needs.

Gastrointestinal symptom severity in irritable bowel syndrome, inflammatory bowel disease and the general population.

BACKGROUND: Irritable bowel syndrome (IBS) and inflammatory bowel disease (IBD) patients report similar gastrointestinal (GI) symptoms, yet comparisons of symptom severity between groups and with the general population (GP) are lacking. METHODS: We compared Patient-Reported Outcomes Measurement Information System (PROMIS® ) GI symptom scales measuring gastro-esophageal reflux (GER), disrupted swallowing, diarrhea, bowel incontinence, nausea/vomiting, constipation, belly pain, and gas/bloating in: (i) USA GP sample, (ii) IBS patients, and (iii) IBD patients from tertiary care and community populations. Symptom severity scores were based on T-score metric with mean 50±10 (standard deviation) relative to the GP. KEY RESULTS: Of 1643 patients enrolled, there were 253 IBS patients (68% F, mean age 45±15 years), 213 IBD patients (46% F, mean age 41±14 years), and 1177 GP subjects (57% F, mean age 46±16 years). IBS patients reported greater severity of GER, disrupted swallowing, nausea/vomiting, belly pain, gas/bloating, and constipation symptoms than their IBD counterparts (all P<.05). Compared to the GP, IBD patients had worse belly pain, gas/bloating, diarrhea, and bowel incontinence, but less severe GER and disrupted swallowing (all P<.05), and IBS patients had more severe nausea/vomiting, belly pain, gas/bloating, and constipation (all P<.05). Women had more severe belly pain and gas/bloating than men, whereas men had more severe bowel incontinence (all P<.05). CONCLUSION & INFERENCES: IBS and IBD are associated with more severe GI symptoms compared to the GP excluding esophageal symptoms. Unlike IBD, IBS is not characterized by observable GI inflammation but patients report more severe upper and lower GI symptoms.

Expectations prior to epilepsy surgery: an exploratory comparison of men and women.

Although the clinical goal of resective epilepsy surgery is seizure freedom, patients have a wide set of expectations for this invasive procedure. The goal of this study was to evaluate potential gender differences in expectations among patients undergoing resective epilepsy surgery. Ratings of the importance of 12 potential impacts ("expectations") of resective surgery were analyzed in a seven-center cohort study including 389 adults aged 16 and older who underwent resective epilepsy surgery. Men and women both ranked anticipated changes in driving and memory as the most important presurgical expectations. Women rated driving, physical activity limitations, and economic worries as less important, and fatigue and pregnancy concerns as more important than did men (p's< or =0.05). Exploratory factor analysis indicated a different pattern of associations among the 12 importance items for men and women. Whether gender differences in presurgical values are associated with outcomes needs exploration.

Prospective validation of the short form liver disease quality of life instrument.

BACKGROUND: Despite the realization that health-related quality of life (HRQOL) is an important outcome in patients with liver disease, there is scarcity of disease-targeted HRQOL measures that have undergone prospective evaluation. AIM: To validate prospectively the short form of liver disease quality of life instrument (the SF-LDQOL) in patients with advanced liver disease. METHODS: The SF-LDQOL includes 36 disease-targeted items representing nine domains: symptoms of liver disease, effects of liver disease, memory/concentration, sleep, hopelessness, distress, loneliness, stigma of liver disease and sexual problems. We administered the SF-LDQOL to 156 advanced liver disease patients at baseline and at 6-month follow-up. We estimated internal consistency reliability for multi-item scales, item discrimination across scale and evaluated construct validity by estimating the associations of SF-LDQOL scores with SF-36 scores, symptom severity and disability days. To evaluate the SF-LDQOL's responsiveness, we compared HRQOL changes for patients who received with those who did not receive liver transplantation (LT). RESULTS: The internal consistency reliability coefficients were > or = 0.70 for seven of nine scales in baseline and for all scales in follow-up administration. The SF-LDQOL correlated highly with SF-36 scores, symptom severity, disability days and global health. Patients undergoing LT reported improved HRQOL compared with patients without LT and the responsiveness indices were excellent. CONCLUSIONS: This study provides support for the reliability and validity of the SF-LDQOL in patients with advanced chronic liver disease. This instrument may be useful in everyday clinical practice and in future clinical trials.

Evaluation of the validity of the Quality of Well-being Scale in Trinidad and Tobago.

Both developing countries in the Caribbean and developed countries face resource allocation challenges. However, cost-effectiveness analysis instruments that may assist in allocation of resources have not been tested in Caribbean countries. Trinidad and Tobago is an advantageous location to test an instrument for potential use in the Caribbean. It has a single payer healthcare system and a literate population. Due to historical and current migration from other Caribbean countries, the population might be a fair representation of English-speaking Caribbean nations. We tested the validity of the Quality of Well-being Scale (QWB) on a sample of the non-institutionalized general population in Trinidad. The survey included reports of chronic conditions and items from the Trinidad and Tobago National Health Interview Survey. Data were analyzed using a multivariable regression model. One adult from each of 235 households consented to the interview. The results are consistent with results obtained in the United States of America. Being older female, more chronic conditions and more symptoms/problems were significantly associated with lower mean QWB scores. These results suggest that the QWB with US-derived weights show evidence of validity in Trinidad and Tobago. Thus, health decision makers can use the QWB to compare the effects of different health conditions and health interventions. In addition, investigators can make cross-cultural comparisons of QWB scores for diseases or health conditions.

Minimally important difference in diffuse systemic sclerosis: results from the D-penicillamine study.

OBJECTIVE: To estimate minimally important differences (MIDs) in scores for the modified Rodnan Skin Score (mRSS) and Health Assessment Questionnaire-Disability Index (HAQ-DI) in a clinical trial on diffuse systemic sclerosis (SSc). PARTICIPANTS AND METHODS: 134 people participated in a 2-year, double-blind, randomised clinical trial comparing efficacy of low-dose and high-dose D-penicillamine in diffuse SSc. At 6, 12, 18 and 24 months, the investigator was asked to rate the change in the patient's health since entering the study: markedly worsened, moderately worsened, slightly worsened, unchanged, slightly improved, moderately improved or markedly improved. Patients who were rated as slightly improved were defined as the minimally changed subgroup and compared with patients rated as moderately or markedly improved. RESULTS: The MID estimates for the mRSS improvement ranged from 3.2 to 5.3 (0.40-0.66 effect size) and for the HAQ-DI from 0.10 to 0.14 (0.15-0.21 effect size). Patients who were rated to improve more than slightly were found to improve by 6.9-14.2 (0.86-1.77 effect size) on the mRSS and 0.21-0.55 (0.32-0.83 effect size) on the HAQ-DI score. CONCLUSION: MID estimates are provided for improvement in the mRSS and HAQ-DI scores, which can help in interpreting clinical trials on patients with SSc and be used for sample size calculation for future clinical trials on diffuse SSc.

Religiousness and spirituality among HIV-infected Americans.

PURPOSE: To describe the demographic and clinical factors associated with the importance of religiousness and spirituality among patients with human immunodeficiency virus (HIV) infection in the United States. METHODS: Longitudinal study of a nationally representative cohort of 2266 patients receiving care for HIV infection surveyed in 1996 and again in 1998. Measures included 12 items assessing religious affiliation and attendance, the importance of religion and spirituality in life, and religious and spiritual practices. Multi-item religiousness and spirituality scales were constructed. RESULTS: Eighty percent of respondents reported a religious affiliation. Sixty-five percent affirmed that religion and 85% that spirituality was "somewhat" or "very" important in their lives. A majority indicated that they "sometimes" or "often" rely on religious or spiritual means when making decisions (72%) or confronting problems (65%). Women, nonwhites, and older patients were more religious and spiritual. Residents of regions other than the western United States reported higher religiousness. High school graduates were more religious and spiritual than those with less education. Patients who did not report one of the risk factors assessed for HIV infection had higher religiousness scores than injection drug users (IDUs). Women, nonwhites other than Hispanics, patients older than 45 years of age compared to those between 18 and 34 years of age, and more educated patients reported higher spirituality. Clinical stage was not associated with religiousness or spirituality. CONCLUSIONS: A large majority of HIV-infected patients in the United States affirm the importance of religiousness and spirituality. These findings support a comprehensive, humanistic approach to the care of HIV-infected patients.

Effects of testosterone replacement in human immunodeficiency virus-infected women with weight loss.

The objective of this study was to determine whether physiological testosterone replacement increases fat-free mass (FFM) and muscle strength and contributes to weight maintenance in HIV-infected women with relative androgen deficiency and weight loss. Fifty-two HIV-infected, medically stable women, 18-50 yr of age, with more than 5% weight loss over 6 months and testosterone levels below 33 ng/dl were randomized into this double-blind, placebo-controlled trial of 24-wk duration. Subjects in the testosterone group applied testosterone patches twice weekly to achieve a nominal delivery of 300 mug testosterone over 24 h. Data were evaluable for 44 women. Serum average total and peak testosterone levels increased significantly in the testosterone group, but did not change in the placebo group. However, there were no significant changes in FFM (testosterone, 0.7 +/- 0.4 kg; placebo, 0.3 +/- 0.4 kg), fat mass (testosterone, 0.3 +/- 0.7 kg; placebo, 0.6 +/- 0.7 kg), or body weight (testosterone, 1.0 +/- 0.9 kg; placebo, 0.9 +/- 0.8 kg) between the two treatment groups. There were no significant changes in leg press strength, leg power, or muscle fatigability in either group. Changes in quality of life, sexual function, cognitive function, and Karnofsky performance scores did not differ significantly between the two groups. High-density lipoprotein cholesterol levels decreased significantly in the testosterone group. The patches were well tolerated. We conclude that physiological testosterone replacement was safe and effective in raising testosterone levels into the mid to high normal range, but did not significantly increase FFM, body weight, or muscle performance in HIV-infected women with low testosterone levels and mild weight loss. Additional studies are needed to fully explore the role of androgens in the regulation of body composition in women.

Equivalence of Chinese and US-English versions of the SF-36 health survey.

This study evaluated the equivalence of Chinese and US-English versions of the SF-36 Health Survey in a convenience sample of 309 Chinese nationals bilingual in Chinese and English living in a US city. Snowball sampling was used to generate sufficient sample size. Internal consistency, test-retest, and equivalent-forms reliability were estimated. Patients were randomized to one of four groups: (1) English version completed first, followed by Chinese version (same occasion); (2) Chinese version completed first, followed by English version (same occasion); (3) English version completed once and then again 1-week later; (4) Chinese version completed once and then again 1-week later. Internal consistency reliability estimates for the Chinese and US-English versions of the SF-36 scales ranged from 0.60 to 0.88; test-retest reliability estimates (1 week time interval) ranged from 0.67 to 0.90. Reliability estimates for corresponding Chinese and US-English SF-36 scales tended to be similar and not significantly different. Equivalent-forms reliability estimates (product-moment correlations) ranged from 0.81 to 0.98. Mean SF-36 scale scores were comparable for both versions of the instrument. This study provides support for the equivalence of the Chinese and US-English versions of the SF-36.

Associations of self-reported oral health with physical and mental health in a nationally representative sample of HIV persons receiving medical care.

BACKGROUND: The impact of oral health on HIV patients has not been sufficiently documented. OBJECTIVE: To estimate the associations between measures of oral and generic health-related quality of life in persons receiving medical care for HIV. DESIGN: This is a longitudinal study of interview data collected in a probability sample of adults with HIV receiving health care in the US. The data were collected at three points in time. PATIENTS: Two thousand eight hundred and sixty-four HIV-infected adults using medical care. MEASUREMENTS: Physical and mental health were assessed using 28 items and oral health was assessed using seven items on oral-related pain and discomfort, worry, appearance, and function. Clinical measures included CD4 count, oral symptoms, physical symptoms, and stage of HIV. Physical functioning and emotional well-being were measured on a 0-100 scale with higher scores indicating better health. Oral health was measured using seven items with a five point scale. RESULTS: In multivariate analyses, oral symptoms had the strongest association with oral health-related quality of life. Each additional oral symptom was associated with an average decrease in oral health (0-100 possible range) of 3.97 points (p = 0.000). In addition, oral health was significantly associated with both physical and mental health. A one-point increase in oral health was associated with a 0.05 (p = 0.000) increase in mental health and 0.02 increase in physical health (p = 0.031). CONCLUSIONS: Oral health is strongly associated with physical and mental health but provides noteworthy unique information in persons with HIV infection. Thus, physical and mental health measures of HIV patients should incorporate indicators of oral functioning and well-being.

Effects of cost sharing on care seeking and health status: results from the Medical Outcomes Study.

OBJECTIVES: This study sought to determine the effect of cost sharing on medical care use for acute symptoms and on health status among chronically ill adults. METHODS: Data from the Medical Outcomes Study were used to compare (1) rates of physician care use for minor and serious symptoms and (2) 6- and 12-month follow-up physical and mental health status among individuals at different levels of cost sharing. RESULTS: In comparison with a no-copay group, the low- and high-copay groups were less likely to have sought care for minor symptoms, but only the high-copay group had a lower rate of seeking care for serious symptoms. Follow-up physical and mental health status scores were similar among the 3 copay groups. CONCLUSIONS: In a chronically ill population, cost sharing reduced the use of care for both minor and serious symptoms. Although no differences in self-reported health status were observed, health plans featuring cost sharing need careful monitoring for potential adverse health effects because of their propensity to reduce use of care that is considered necessary and appropriate.

Improvement in emotional well-being and relationships of users of sildenafil.

PURPOSE: We estimated the association of sildenafil use with erectile function, relationship with sexual partner, functional status and emotional well-being in men with erectile dysfunction. MATERIALS AND METHODS: Letters were mailed to eligible patients at a university hospital urology and internal medicine clinic, and university affiliated community primary care clinics by the primary care provider or urologist inviting them to participate in the study. Of the eligible sample 124 men (53%) completed and returned a survey, including 85 who reported current sildenafil use. Change scores in these patients were calculated using the International Index of Erectile Function, marital interaction scale from the Cancer Rehabilitation Evaluation System Short Form, 5-item emotional well-being scale of the RAND 36-Item Health Survey and 12-Item Short Form Health Survey. RESULTS: Sildenafil users reported an 88% increase in erectile function scores, 60% increase in overall sexual satisfaction and 36% increase in intercourse satisfaction related to the use of sildenafil (p <0.001). Of the respondents 38% indicated that using sildenafil had definitely improved quality of life. Likewise 29% of respondents indicated that using sildenafil had definitely improved the relationship with their partner. With sildenafil there was a statistically significant improvement in the scores of erectile and sexual function (p <0.001), sexual partner relationship (p = 0.007) and emotional well-being (p <0.001). In a multivariate model improved erectile function and sexual partner relationship were each significantly associated with improved emotional well-being (R2 = 0.20, p <0.001). CONCLUSIONS: Sildenafil users reported significant improvements in erectile and sexual function that were associated with positive changes in emotional well-being and the sexual partner relationships with their sexual partner.

Expectations regarding aging among older adults and physicians who care for older adults.

BACKGROUND: Understanding older adults' expectations regarding aging is important for both clinicians and policy-makers. OBJECTIVES: 1) To identify the content for a survey to measure expectations regarding aging; 2) to qualitatively compare older adults' and physicians' expectations regarding aging. SETTING: Three senior centers and one university-based internal medicine faculty practice. PARTICIPANTS: Forty-nine adults (mean age 78 years); 11 primary care clinicians (mean age 37 years). MEASUREMENTS: A facilitator conducted five focus groups of older adults and two of physicians using a standardized script designed to elicit expectations regarding aging. Qualitative analysis by two independent reviewers identified domains of expectations, with a 3rd reviewer used to resolve discrepancies. A corresponding coding scheme was applied to each line of the transcripts. Content and frequency of expectations regarding aging and beliefs regarding care seeking were examined and compared. RESULTS: Content analysis identified 26 domains of expectations regarding aging. Each of the seven most frequently mentioned domains of expectations was mentioned by at least 50% of participants. Of 760 unique statements coded, the most frequently described domains in both the older adult and physician groups were physical function, cognitive function, social function, pain, and sexual function. Older adults differed from physicians by describing five mental-health related domains: anxiety, emotional-well-being, happiness, sleep, and length of life/death. CONCLUSIONS: Using focus groups of older adults and physicians, we identified consistent content for a closed-ended patient-centered survey to measure expectations regarding aging. Further study should determine whether physicians address mental health aspects of aging valued by older persons.

Case-mix adjustment of the National CAHPS benchmarking data 1.0: a violation of model assumptions?

OBJECTIVE: To compare models for the case-mix adjustment of consumer reports and ratings of health care. DATA SOURCES: The study used the Consumer Assessment of Health Plans (CAHPS) survey 1.0 National CAHPS Benchmarking Database data from 54 commercial and 31 Medicaid health plans from across the United States: 19,541 adults (age > or = 18 years) in commercial plans and 8,813 adults in Medicaid plans responded regarding their own health care, and 9,871 Medicaid adults responded regarding the health care of their minor children. STUDY DESIGN: Four case-mix models (no adjustment; self-rated health and age; health, age, and education; and health, age, education, and plan interactions) were compared on 21 ratings and reports regarding health care for three populations (adults in commercial plans, adults in Medicaid plans, and children in Medicaid plans). The magnitude of case-mix adjustments, the effects of adjustments on plan rankings, and the homogeneity of these effects across plans were examined. DATA EXTRACTION: All ratings and reports were linearly transformed to a possible range of 0 to 100 for comparability. PRINCIPAL FINDINGS: Case-mix adjusters, especially self-rated health, have substantial effects, but these effects vary substantially from plan to plan, a violation of standard case-mix assumptions. CONCLUSION: Case-mix adjustment of CAHPS data needs to be re-examined, perhaps by using demographically stratified reporting or by developing better measures of response bias.

Racial and ethnic differences in parents' assessments of pediatric care in Medicaid managed care.

OBJECTIVE: This study examines whether parents' reports and ratings of pediatric health care vary by race/ethnicity and language in Medicaid managed care. DATA SOURCES: The data analyzed are from the National Consumer Assessment of Health Plans (CAHPS) Benchmarking Database 1.0 and consist of 9,540 children enrolled in Medicaid managed care plans in Arkansas, Kansas, Minnesota, Oklahoma, Vermont, and Washington state from 1997 to 1998. DATA COLLECTION: The data were collected by telephone and mail, and surveys were administered in Spanish and English. The mean response rate for all plans was 42.1 percent. STUDY DESIGN: Data were analyzed using multiple regression models. The dependent variables are CAHPS 1.0 ratings (personal doctor, specialist, health care, health plan) and reports of care (getting needed care, timeliness of care, provider communication, staff helpfulness, plan service). The independent variables are race/ethnicity (white, African American, American Indian, Asian, and Hispanic), Hispanic language (English or Spanish), and Asian language (English or other), controlling for gender, age, education, and health status. PRINCIPAL FINDINGS: Racial/ethnic minorities had worse reports of care than whites. Among Hispanics and Asians language barriers had a larger negative effect on reports of care than race/ethnicity. For example, while Asian non-English-speakers had lower scores than whites for staff helpfulness (beta = -20.10), timeliness of care (beta = -18.65), provider communication (beta = -17.19), plan service (beta = -10.95), and getting needed care (beta = -8.11), Asian English speakers did not differ significantly from whites on any of the reports of care. However, lower reports of care for racial/ethnic groups did not translate necessarily into lower ratings of care. CONCLUSIONS: Health plans need to pay increased attention to racial/ethnic differences in assessments of care. This study's finding that language barriers are largely responsible for racial/ethnic disparities in care suggests that linguistically appropriate health care services are needed to address these gaps.

Differences in CAHPS adult survey reports and ratings by race and ethnicity: an analysis of the National CAHPS benchmarking data 1.0.

OBJECTIVE: To examine racial/ethnic group differences in adults' reports and ratings of care using data from the National Consumer Assessment of Health Plans (CAHPS) survey Benchmarking Database (NCBD) 1.0. DATA SOURCE: Adult data from the NCBD 1.0 is comprised of CAHPS 1.0 survey data from 54 commercial and 31 Medicaid health plans from across the United States. A total of 28,354 adult respondents (age > or = 18 years) were included in this study. Respondents were categorized as belonging to one of the following racial/ethnic groups: Hispanic (n = 1,657), white (n = 20,414), black or African American (n = 2,942), Asian and Pacific Islander (n = 976), and American Indian or Alaskan native (n = 588). STUDY DESIGN: Four single-item global ratings (personal doctor, specialty care, overall rating of health plan, and overall rating of health care) and five multiple-item report composites (access to needed care, provider communication, office staff helpfulness, promptness of care, and health plan customer service) from CAHPS 1.0 were examined. Statistical Analyses. Multiple regression models were estimated to assess differences in global ratings and report composites between whites and members of other racial/ethnic groups, controlling for age, gender, perceived health status, educational attainment, and insurance type. PRINCIPAL FINDINGS: Members of racial/ethnic minority groups, with the exception of Asians/Pacific Islanders, reported experiences with health care similar to those of whites. However, global ratings of care by Asians/Pacific Islanders are similar to those of whites. CONCLUSIONS: Improvements in quality of care for Asians/Pacific Islanders are needed. Comparisons of care in racially and ethnically diverse populations based on global ratings of care should be interpreted cautiously.

The RAND-36 measure of health-related quality of life.

The RAND-36 is perhaps the most widely used health-related quality of life (HRQoL) survey instrument in the world today. It is comprised of 36 items that assess eight health concepts: physical functioning, role limitations caused by physical health problems, role limitations caused by emotional problems, social functioning, emotional well-being, energy/fatigue, pain, and general health perceptions. Physical and mental health summary scores are also derived from the eight RAND-36 scales. This paper provides example applications of the RAND-36 cross-sectionally and longitudinally, provides information on what a clinically important difference is for the RAND-36 scales, and provides guidance for summarizing the RAND-36 in a single number. The paper also discusses the availability of the RAND-36 in multiple languages and summarizes changes that are incorporated in the latest version of the survey.

Translation, cultural adaptation, and initial reliability and multitrait testing of the Kidney Disease Quality of Life instrument for use in Japan.

BACKGROUND: The Kidney Disease Quality of Life instrument (KDQOL) consists of 79 items: 36 asking about health-related quality of life (HRQOL) in general (the Medical Outcomes Study SF-36) and 43 asking about QOL as it is affected by kidney disease and by dialysis. AIM: Translation, cultural adaptation and initial reliability and multitrait testing of the KDQOL for use in Japan. METHODS: Translation and cultural adaptation began with two translations into Japanese, two backtranslations into English, and discussions among the translators, the project coordinators in Japan, and the developers of the original (US-English) version. Focus-group discussions and field testing were followed by analyses of test-retest reliability, internal consistency, and convergent and discriminant construct validity. RESULTS: All eight of the SF-36 scales met the criterion for internal consistency (Cronbach's alpha ranged from 0.73 to 0.92) and were reproducible (intraclass correlations between test and retest scores ranged from 0.60 to 0.82). Of the 10 kidney-disease-targeted scales, only two had alpha coefficients of less than 0.70: 'sleep' (0.61) and 'quality of social interaction' (0.35). One item on the 'quality of social interaction' scale had a very weak correlation with the remainder of that scale (r = 0.10). Eliminating that item from scoring increased the alpha coefficient of the scale from 0.35 to 0.64. All three items on the 'quality of social interaction' scale had very strong correlations with other scales. CONCLUSIONS: First, in Japanese patients receiving dialysis the SF-36 scales are internally consistent and their scores are reproducible. Second, with the possible exception of the 'quality of social interaction' scale, the Japanese version of the KDQOL, can provide psychometrically sound kidney-disease-targeted data on quality of life in such patients.

Development of the 25-item National Eye Institute Visual Function Questionnaire.

OBJECTIVE: To develop and test the psychometric properties of a 25-item version of the National Eye Institute Visual Function Questionnaire (NEI VFQ-25). DESIGN: Prospective observational cohort study of persons with 1 of 5 chronic eye diseases or low vision who were scheduled for nonurgent visits in ophthalmology practices and a reference sample of persons without eye disease. SETTING: Eleven university-based ophthalmology practices and the NEI Clinical Center. PATIENTS: Eligible participants had to have 1 of the following eye conditions: age-related cataracts, age-related macular degeneration, diabetic retinopathy, primary open-angle glaucoma, cytomegalovirus retinitis, or low vision from any cause. Seven of the 12 sites also enrolled persons in a reference sample. Reference sample participants had no evidence of underlying eye disease but were scheduled for either screening eye examinations or correction of refractive error. All eligible persons had to be 21 years or older, English speaking, and cognitively able to give informed consent and participate in a health status interview. MEASUREMENTS AND MAIN RESULTS: To provide the data needed to create the NEI VFQ-25, all subjects completed an interview that included the 51-item NEI VFQ. Estimates of internal consistency indicate that the subscales of the NEI VFQ-25 are reliable. The validity of the NEI VFQ-25 is supported by high correlations between the short- and long-form versions of the measure, observed between-group differences in scores for persons with different eye diseases of varying severity, and the moderate-to-high correlations between the NEI VFQ-25 subscales that have the most to do with central vision and measured visual acuity. CONCLUSIONS: The reliability and validity of the NEI VFQ-25 are comparable to those of the 51-item NEI VFQ field test version of the survey. This shorter version will be more feasible in settings such as clinical trials where interview length is a critical consideration. In addition, preliminary analyses indicate that the psychometric properties of the NEI VFQ-25 are robust for the eye conditions studied; this suggests that the measure will provide reproducible and valid data when used across multiple conditions of varying severity.