To estimate the effect of change in weight and change in urinary incontinence (UI) frequency on changes in preference-based measures of health-related quality of life (HRQL) among overweight and obese women with UI participating in a weight loss trial.
We conducted a longitudinal cohort analysis of 338 overweight and obese women with UI enrolled in a randomized clinical trial comparing a behavioral weight loss intervention to an educational control condition. At baseline, 6, and 18 months, health utilities were estimated using the Health Utilities Index Mark 3 (HUI3), a transformation of the SF-36 to the preference-based SF-6D, and the estimated Quality of Well-Being (eQWB) score (a summary calculated from the SF-36 physical functioning, mental health, bodily pain, general health perceptions, and role limitations-physical subscale scores). Potential predictors of changes in these outcomes were examined using generalized estimating equations.
In adjusted multivariable models, weight loss was associated with improvement in HUI3, SF-6D, and eQWB at 6 and 18 months (p<.05). Increases in physical activity also were independently associated with improvement in HUI3 (p=.01) and SF-6D (p=.006) scores at 18 months. In contrast, reduction in UI frequency did not predict improvements in HRQL at 6 or 18 months.
Weight loss and increased physical activity, but not reduction in UI frequency, were strongly associated with improvements in health utilities measured by the HUI3, SF-6D, and eQWB. These findings provide important information that can be used to inform cost-utility analyses of weight loss interventions.
quality of life; weight loss; urinary incontinence; HUI; eQWB; SF-6D
This study aimed to: (1) determine the health-related quality of life (HRQoL) in mothers of five year old very low birth weight (VLBW) and normal birth weight (NBW) children; (2) determine what extent stress mediates the relationship between case status and maternal HRQoL; and (3) examine the pre-pregnancy, pregnancy, birth, and child health-related factors in predicting maternal HRQoL among mothers of five year old VLBW children.
A telephone interview was administered to 297 mothers of VLBW children and 290 mothers of NBW children who were enrolled in the Newborn Lung Project Statewide Cohort Study.
Mothers of VLBW children experienced worse physical and mental HRQoL than mothers of NBW children (52.8 versus 55.3 points, p<0.0001, and 48.9 versus 50.5 points, p=0.02, respectively). Adjusted analyses showed that maternal mental HRQoL was similar between cases and controls while physical HRQoL when children were age five was significantly different between cases and controls (Beta:−2.02, p=0.0006); this relationship was mediated by maternal stress. Among mothers of VLBW children, stress significantly contributed to adverse HRQoL outcomes when children were age five. Child behavior problems at age two were also associated with worse subsequent maternal mental HRQoL (Beta: −1.8 per SD, p=0.004), while each week of neonatal intensive care unit stay was associated with worse physical HRQoL (Beta: −0.26, p=0.02).
While caring for a VLBW child negatively impacts the HRQoL of mothers, this relationship was partially explained by maternal stress. Addressing maternal stress may be an important way to improve long-term HRQoL.
Very low birth weight; maternal stress; maternal health-related quality of life; life course
To validate a disease-specific scale to measure impact of symptoms of bladder pain syndrome/interstitial cystitis (BPS/IC), a condition that affects up to 6.5% of U.S. women.
Participants were drawn from the RAND Interstitial Cystitis Epidemiology Study (RICE), a telephone probability survey of 146,231 U.S. households. Women who met RICE BPS/IC symptom criteria (n=3,397) completed the 6 -item RAND Bladder Symptom Impact scale (RICE BSI-6). The RICE BSI-6 was adapted from a scale used to assess impact of diabetes on life and sexuality, and modified based on expert input on face validity and focus group work; items specific to diabetic symptoms were eliminated. Validated scales of symptom severity, mental-and physical -health-related QoL, depression, coping, and perceived control were used to assess convergent validity.
The RICE BSI-6 (α=.92) was significantly related to greater symptom severity, worse general mental and physical health-related QoL, more severe depression symptoms, and lower perceived control over life in general and over BPS/IC symptoms (p-values<.05). It was also associated with less use of distancing coping (p<.05).
The RICE BSI-6 shows excellent internal consistency and strong convergent validity. It can be used to examine effects of psychosocial and treatment interventions on QoL among women with BPS/IC.
Painful Bladder Syndrome; Interstitial Cystitis; quality of life; women
Stronger sense of control has been associated with improved health outcomes. This study tested whether the association between sense of control and self-reported health varied among demographic groups and whether sense of control attenuated sociodemographic differences in self-reported health.
Data from 6,815 participants in the Health and Retirement Study were used to examine moderation between demographic characteristics and sense of control (measured by the personal mastery and perceived constraints scales of the Midlife Developmental Inventory) in their associations with three self-reported health measures (global rating of fair/poor health, functional limitations, and number of comorbid conditions).
Higher personal mastery and lower perceived constraints were associated with better self-reported health. There were no significant interactions between the sense of control measures and age, gender, education level, income, or marital status in their associations with either global self-rated health or functional limitations. Higher levels of mastery were associated with lower likelihood of functional limitations among blacks and whites, but not among those of other races. Perceived constraints were slightly more strongly associated with number of comorbid conditions among older than younger individuals.
Sense of control measures were generally similarly associated with self-reported health across demographic groups and did not attenuate demographic differences in health.
Sense of control; Self-rated health; Functional limitations; Disease burden
The objective of the present study is to describe the item response theory (IRT) analysis of the National Institutes of Health (NIH) Patient Reported Out-comes Measurement Information System (PROMIS®) pediatric parent proxy-report item banks and the measurement properties of the new PROMIS® Parent Proxy Report Scales for ages 8–17 years.
Parent proxy-report items were written to parallel the pediatric self-report items. Test forms containing the items were completed by 1,548 parent–child pairs. CCFA and IRT analyses of scale dimensionality and item local dependence, and IRT analyses of differential item functioning were conducted.
Parent proxy-report item banks were developed and IRT parameters are provided. The recommended unidimensional short forms for the PROMIS® Parent Proxy Report Scales are item sets that are subsets of the pediatric self-report short forms, setting aside items for which parent responses exhibit local dependence. Parent proxy-report demonstrated moderate to low agreement with pediatric self-report.
The study provides initial calibrations of the PROMIS® parent proxy-report item banks and the creation of the PROMIS® Parent Proxy-Report Scales. It is anticipated that these new scales will have application for pediatric populations in which pediatric self-report is not feasible.
PROMIS®; Parent proxy report; Item response theory
To identify correlates of self-rated and caregiver-rated quality of life (QOL) in community-residing persons with dementia (PWD) for intervention development.
Cross-sectional data of 254 PWD and their caregivers participating in a clinical trial were derived from in-home assessments. Self-rated QOL was measured with the Quality of Life-Alzheimer Disease (QOL-AD) scale, and caregiver-rated QOL was measured using the QOL-AD and Alzheimer Disease Related Quality of Life (ADRQL) scales. Multivariate modeling identified correlates of the PWD’ QOL.
Self-rated QOL was related significantly to participant race, unmet needs, depression, and total medications. Caregiver-rated QOL-AD scores were significantly associated with participant function, unmet needs, depression, and health problems and with caregiver burden and self-rated health. Significant correlates of ADRQL scores included neuropsychiatric symptom severity, functional and cognitive impairment, and caregiver burden and depression.
Correlates of QOL in community-residing PWD depend on who rates the PWD’s QOL and which measure is used. Addressing health problems, medication use, and dementia-related unmet needs, reducing functional dependency, and treating neuropsychiatric symptoms in PWD, while reducing caregiver burden and depression, may maximize QOL in those with dementia.
Little attention has been paid to selecting and developing health-related quality of life (HRQOL) measurement tools for young adult survivors of childhood cancer (YASCC). The primary purpose of this study was to develop a HRQOL tool for YASCC based on three legacy instruments.
Data collected from 151 YASCC were analyzed. HRQOL was measured using the Medical Outcomes Study SF-36, Quality of Life in Adult Cancer Survivors, and Quality of Life-Cancer Survivor. We used the following stages to develop our HRQOL tool: mapping items from three instruments into a common HRQOL construct, checking dimensionality using confirmatory factor analyses (CFA), and equating items using Rasch modeling.
We assigned 123 items to a HRQOL construct comprised of six generic and eight survivor-specific domains. CFA retained 107 items that meet the assumptions of unidimensionality and local independence. Rasch analysis retained 68 items that satisfied the indices of information-weighted/outlier-sensitive fit statistic mean square. However, items in most domains possess relatively easy measurement properties, whereas YASCC’s underlying HRQOL was on the middle to higher levels.
Psychometric properties of the established tool for measuring HRQOL of YASCC were not satisfied. Future studies need to refine this tool, especially adding more challenging items.
Childhood cancer; measurement; quality of life; Rasch analysis; young adult survivor
Considerable research has demonstrated the negative psychosocial impact of cancer. Recent work has highlighted positive psychosocial outcomes. Research is now needed to evaluate the relationship between negative and positive impacts. This paper reports the development and validation of a measurement model capturing positive and negative psychosocial illness impacts.
The sample included 754 cancer patients on- or post-treatment. Item development was informed by literature review, expert input patient interviews and the results of a pilot study of 205 cancer patients, resulting in 43 positive and 46 negative items. Factor analyses were used to evaluate the dimensionality of the item pools. Analysis of variance (ANOVA) was used to examine relationships between psychosocial illness impact and other variables.
Unidimensionality was demonstrated within but not across negative and positive impact items. ANOVA results showed differential relationships between negative and positive impacts, respectively, and patient sociodemographic and clinical variables.
Positive and negative psychosocial illness impacts are best conceptualized and measured as two independent factors. Computerized adaptive tests and short-form measures developed from this comprehensive psychosocial illness impact item bank may benefit future research and clinical applications.
Psychosocial sequelae; Cancer; Cancer survivors; Bi-factor analysis
The PedsQL™ (Pediatric Quality of Life Inventory™) is a modular instrument designed to measure health-related quality of life and disease-specific symptoms. The PedsQL™ Cognitive Functioning Scale was developed as a brief generic symptom-specific instrument to measure cognitive functioning. The objective of the present study was to determine the feasibility, reliability, and validity of the PedsQL™ Cognitive Functioning Scale in pediatric liver transplant recipients.
The 6-item PedsQL™ Cognitive Functioning Scale and the PedsQL™ 4.0 Generic Core Scales were completed by pediatric liver transplant recipients ages 8–18 years (n = 215) and parents of pediatric liver transplant recipients ages 2–18 years (n = 502). Both patient self-report and parent proxy-report were available for 212 cases. The 72-item Behavior Rating Inventory of Executive Function (BRIEF), a widely validated measure of executive functioning, was completed by 100 parents and 56 teachers on a subset of patients.
The PedsQL™ Cognitive Functioning Scale demonstrated minimal missing responses (0.0%, child report, 0.67%, parent report), achieved excellent reliability (α = 0.88 child report, 0.94 parent report), distinguished between pediatric patients with liver transplants and healthy children supporting discriminant validity, and was significantly correlated with the PedsQL™ 4.0 Generic Core Scales and the BRIEF supporting construct and concurrent validity, respectively. Pediatric liver transplants recipients experienced cognitive functioning comparable to long-term pediatric cancer survivors.
The results demonstrate the feasibility, reliability, discriminant, construct and concurrent validity of the PedsQL™ Cognitive Functioning Scale in pediatric liver transplant recipients.
Cognitive functioning; PedsQL™; liver transplant; pediatrics; executive functioning; quality of life
Cancer survivors frequently experience worry about a variety of topics, including fear of recurrence. However, general measures of worry still require examination of reliability for this vulnerable population. This study utilized modern psychometric methods to examine the reliability of a worry measure in women with breast or gynecologic cancer.
Women with cancer (n = 332) completed the 16-item Penn State Worry Questionnaire (PSWQ), which has an abbreviated 8-item version (PSWQ-A). Categorical confirmatory factor analysis (CCFA) was used to determine the factor structure and item response theory (IRT) was used to examine score reliability.
CCFA supported a two-factor structure with 11 positively worded items and the 5 negatively worded items loading on different factors. IRT analysis of the 11 positively worded items showed that each was contributing meaningful information to the overall scores. The 11 positively worded items and the PSWQ-A produced the most reliable scores for levels of worry ranging from one θ below to two θ above the mean.
The 11 positively worded items of the PSWQ and the 8-item PSWQ-A were suitable for use in cancer patients while the full PSWQ was unsuitable due to inclusion of the negatively worded items. Future research should consider measuring worry when examining distress in cancer survivors.
Worry; Anxiety; Item response theory; Factor analysis; Cancer; Oncology
This study determined how the magnitude of change in positive subjective responses predicts clinical outcome in a treatment setting. Specifically, we attempted to define what constitutes a clinically important difference (CID) in subjective responses.
A 100-mm visual analog scale (VAS) measured subjective ratings of drug “high,” calculated via an anchor-based method with published data from participants receiving sustained-release naltrexone (NTX) and heroin in a laboratory setting. The data were then compared to clinical outcomes in a treatment trial with sustained-release naltrexone. A distribution-based method subsequently analyzed data from participants who received ALO-01 (extended-release morphine with sequestered NTX) to predict its abuse liability.
Differences in ratings of drug high of approximately 10 mm on a 100-mm line were clinically significant. By extrapolation, CIDs were also found between crushed or intact ALO-01 and immediate-release morphine sulfate (IRMS). No CIDs were found between intact and crushed ALO-01.
From laboratory and treatment trial data involving naltrexone, calculation of CIDs in subjective ratings of high is possible. Consequently, crushing/swallowing or injecting ALO-01 produces clinically significantly less drug high than oral or intravenous morphine alone, suggesting that ALO-01 has lower abuse liability by those routes than morphine formulations.
Analgesics; Opioid; Drug formulations; Morphine; Drug high; Abuse liability
The National Institutes of Health sponsored Patient-Reported Outcome Measurement Information System (PROMIS) aimed to create item banks and computerized adaptive tests (CATs) across multiple domains for individuals with a range of chronic diseases.
Web-based software was created to enable a researcher to create study-specific Websites that could administer PROMIS CATs and other instruments to research participants or clinical samples. This paper outlines the process used to develop a user-friendly, free, Web-based resource (Assessment CenterSM) for storage, retrieval, organization, sharing, and administration of patient-reported outcomes (PRO) instruments.
Joint Application Design (JAD) sessions were conducted with representatives from numerous institutions in order to supply a general wish list of features. Use Cases were then written to ensure that end user expectations matched programmer specifications. Program development included daily programmer “scrum” sessions, weekly Usability Acceptability Testing (UAT) and continuous Quality Assurance (QA) activities pre- and post-release.
Assessment Center includes features that promote instrument development including item histories, data management, and storage of statistical analysis results.
This case study of software development highlights the collection and incorporation of user input throughout the development process. Potential future applications of Assessment Center in clinical research are discussed.
Software; Software design; Outcome assessment (health care); Psychometrics; Quality of life; Health surveys; Questionnaires
Content validity of patient-reported outcomes (PROs) is evaluated primarily during item development, but subsequent psychometric analyses, particularly for item-response theory (IRT)-derived scales, often result in considerable item pruning and potential loss of content. After selecting items for the PROMIS banks based on psychometric and content considerations, we invited external content expert reviews of the degree to which the initial domain names and definitions represented the calibrated item bank content.
A minimum of four content experts reviewed each item bank and recommended a domain name and definition based on item content. Domain names and definitions then were revealed to the experts who rated how well these names and definitions fit the bank content and provided recommendations for definition revisions.
These reviews indicated that the PROMIS domain names and definitions remained generally representative of bank content following item pruning, but modifications to two domain names and minor to moderate revisions of all domain definitions were needed to optimize fit with the item bank content.
This reevaluation of domain names and definitions following psychometric item pruning, although not previously documented in the literature, appears to be an important procedure for refining conceptual frameworks and further supporting content validity.
content validity; conceptual framework; domain definition; item-response theory
The objective of the paper is to describe trajectories of health-related quality of life (HRQL) associated with categories of body mass index (BMI): underweight, normal weight, overweight, obese class I, and obese classes II and III.
Data come from the longitudinal Canadian National Population Health Survey. Analyses are based on data for 3864 males and 4745 females who were 40+ in 1998/99 and followed through 2006/07. HRQL was measured with the Health Utilities Index Mark 3. Multi-level growth modeling was used.
HRQL declined with age. For males, there was a large HRQL decrement for being underweight; trajectories for all other BMI categories were very similar. For females being underweight was associated with higher HRQL at younger ages but lower at older ages. Otherwise for females, HRQL was ordered from highest to lowest: normal, overweight, obese class I, and obese classes II and III.
Given that excess weight is a risk factor for mortality and the development of chronic conditions, the HRQL results for males are surprising. The HRQL results for females may reflect both the importance of body image on mental health and the health effects of excess weight.
Body Mass Index; Health-Related Quality of Life; Obesity; Health Utilities Index; Trajectories
This review examines psychometric performance of three widely used generic preference-based measures, that is, EuroQol 5 dimensions (EQ-5D), Health Utility Index 3 (HUI3) and Short-form 6 dimensions (SF-6D) in patients with hearing impairments.
A systematic search was undertaken to identify studies of patients with hearing impairments where health state utility values were measured and reported. Data were extracted and analysed to assess the reliability, validity (known group differences and convergent validity) and responsiveness of the measures across hearing impairments.
Fourteen studies (18 papers) were included in the review. HUI3 was the most commonly used utility measures in hearing impairment. In all six studies, the HUI3 detected difference between groups defined by the severity of impairment, and four out of five studies detected statistically significant changes as a result of intervention. The only study available suggested that EQ-5D only had weak ability to discriminate difference between severity groups, and in four out of five studies, EQ-5D failed to detected changes. Only one study involved the SF-6D; thus, the information is too limited to conclude on its performance. Also evidence for the reliability of these measures was not found.
Overall, the validity and responsiveness of the HUI3 in hearing impairment was good. The responsiveness of EQ-5D was relatively poor and weak validity was suggested by limited evidence. The evidence on SF-6D was too limited to make any judgment. More head-to-head comparisons of these and other preference measures of health are required.
Validity; Responsiveness; EQ-5D; HUI3; SF-6D; Hearing impairments
The Patient Reported Outcomes Measurement Information System (PROMIS) aims to develop patient-reported outcome (PROs) instruments for use in clinical research. The PROMIS pediatrics (ages 8–17) project focuses on the development of PROs across several health domains (physical function, pain, fatigue, emotional distress, social role relationships, and asthma symptoms). The objective of the present study is to report on the psychometric properties of the PROMIS Pediatric Anger Scale.
Participants (n=759) were recruited in public school settings, hospital-based outpatient and subspecialty pediatrics clinics. The anger items (k=10) were administered on one test form. A hierarchical confirmatory factor analytic model (CFA) was conducted to evaluate scale dimensionality and local dependence. Item response theory (IRT) analyses were then used to finalize the item scale and short form.
CFA confirmed that the anger items are representative of a unidimensional scale and items with local dependence were removed resulting in a six-item short form. The IRT-scaled scores from summed scores and each score’s conditional standard error were calculated for the new six-item PROMIS Pediatric Anger Scale.
This study provides initial calibrations of the anger items and creates the PROMIS Pediatric Anger Scale, version 1.0
PROMIS; Anger; HRQOL; PRO; Scale Development; Surveys; Pediatrics
Adverse symptom event reporting is vital as part of clinical trials and drug labeling to ensure patient safety and inform risk–benefit decision making. The purpose of this study was to assess the reliability of adverse event reporting of different clinicians for the same patient for the same visit.
A retrospective reliability analysis was completed for a sample of 393 cancer patients (42.8% men; age 26–91, M = 62.39) from lung (n = 134), prostate (n = 113), and Ob/Gyn (n = 146) clinics. These patients were each seen by two clinicians who independently rated seven Common Terminology Criteria for Adverse Events (CTCAE) symptoms. Twenty-three percent of patients were enrolled in therapeutic clinical trials.
The average time between rater evaluations was 68 min. Intraclass correlation coefficients were moderate for constipation (0.50), diarrhea (0.58), dyspnea (0.69), fatigue (0.50), nausea (0.52), neuropathy (0.71), and vomiting (0.46). These values demonstrated stability over follow-up visits. Two-point differences, which would likely affect treatment decisions, were most frequently seen among symptomatic patients for constipation (18%), vomiting (15%), and nausea (8%).
Agreement between different clinicians when reporting adverse symptom events is moderate at best. Modification of approaches to adverse symptom reporting, such as patient self-reporting, should be considered.
Drug toxicity; Reproducibility of results; Risk assessment; Statistical data interpretation
The aim of the study was to analyse the health-related quality of life (HRQoL) in Polish children with chronic kidney disease (CKD) dependant on the CKD stage, treatment modality and selected social life elements in families of the patients. Furthermore, potential differences between self-report and parent/proxy reports and the factors influencing them were assessed.
A total of 203 CKD children (on haemodialysis (HD), peritoneal dialysis (PD) and conservative treatment (CT)) and their 388 parent/proxies were enrolled into a cross-sectional national study. The demographic and social data were evaluated. We used the Paediatric Quality of Life Inventory 4.0 Generic Core Scales to assess the HRQoL in children.
Health-related quality of life scores for all CKD groups were significantly lower in all domains compared with population norms, the lowest one being in the HD group. In CT children, HRQoL did not depend on the CKD stage. Both parents assessed the HRQoL of their children differently depending on their involvement in the care. There are differences between the HRQoL scores of the children and their parents.
The HRQoL in children with CKD is lower than in healthy children. This is already observed in the early stages of the disease. The disease itself influences the child’s mental state. Children on HD require special support on account of the lowest demonstrated overall HRQoL. Children’s lower rating of the quality of life observed by their parents may render the patients unmotivated and adversely affect their adjustment to life in later years. It may also create conflicts between the parents and the children.
Chronic kidney disease; Children; Family life; Health-related quality of life
We examine the impact of menopausal status, beyond menopausal symptoms, on health-related quality of life (HRQoL).
Seven hundred thirty-two women aged 40–65, regardless of health condition or menopausal status, were enrolled from single general internal medicine practice. Women completed annual questionnaires including HRQoL, and menopausal status and symptoms.
The physical health composite of the RAND-36 is lower in late peri (45.6, P<.05), early post (45.4, P<.05), and late postmenopausal women (44.6, P<.01), and those who report a hysterectomy (44.2, P<.01) compared to premenopausal women (47.1), with effect sizes of Cohen’s d = .12-.23. The mental health composite of the RAND-36 is lower in late peri (44.7, P<.01), early post (44.9, P<.01), and late postmenopausal women (45.0, P<.05) and those who report a hysterectomy (44.2, P<.01) compared to premenopausal women (46.8), with effect sizes of Cohen’s d = .15–.20. Findings are comparable adjusted for menopausal symptom frequency and bother.
Over a 5-year follow-up period, we found a negative impact of menopause on some domains of HRQoL, regardless of menopausal symptoms. Clinicians should be aware of this relationship and work to improve HRQoL, rather than expect it to improve spontaneously when menopausal symptoms resolve.
Menopause; Health-related quality of life; Hot flashes; Vaginal dryness; Women’s health
According to the World Health Organization, quality of life (QOL) includes physical and mental health, emotional well-being, and social functioning. Using an adaptation of Andersen's behavioral model, we examined the associations between the three dimensions of QOL and needs and health behaviors in a nationally representative sample of adults 65 years and older.
A representative sample from the 2005–2006 National Health and Nutrition Examination Survey (NHANES) was used. NHANES over-samples persons 60 years and older, African Americans, and Hispanics. Frequencies and distribution patterns were assessed, followed by bivariate and multiple regression analyses.
These older adults reported high levels of QOL. However, associations between needs and health behaviors and QOL varied across dimensions. Activities of daily living (ADL) were associated with all three dimensions. Depression was associated with two dimensions and memory problems with one dimension. Physical activity was linked to social functioning, and health care utilization was linked to emotional well-being.
The differences in associations with different dimensions of QOL confirm that this is a multidimensional concept. Since depression, memory problems, and ADL function were all associated with some dimension of QOL, future interventions to improve QOL in older adults should include screening and treatment for these problems.
Quality of life; Social functioning; Emotional well-being; Older adults; NHANES 2005–2006
To construct a model to predict preference-adjusted EuroQol 5D (EQ-5D) health utilities for CS using the disease-specific health-related quality of life measure (CushingQOL).
Data were obtained from the European Registry on CS (ERCUSYN). ERCUSYN is a web-based, multicenter, observational study that enrolled 508 CS patients from 36 centers in 23 European countries. Patients included in the study completed both the EQ-5D and the disease-specific CushingQOL questionnaire. Socio-demographic and clinical data were also collected. The UK tariff values were used to calculate EQ-5D utility scores. Various predictive models were tested, and the final model was selected based on four criteria: explanatory power (adjusted R-squared), consistency of estimated coefficients (sign and parameter estimation), normality of prediction errors (mean error, mean absolute error, root mean squared error), and parsimony.
For the mapping analysis, data were available from a total of 129 patients. Mean (SD) age was 43.1 (13) years, and the sample was predominantly female (84.5 %). Patients had a mean (SD) CushingQOL score of 39.7 (17.1) and a mean (SD) ‘tariff’ value on the EQ-5D of 0.55 (0.3). The model which best met the criteria for selection included the intercept and 3 CushingQOL’s questions and had an R2 of 0.506 and a root mean square error of 0.216.
It was possible to find a mapping function which successfully predicted the EQ-5D UK utilities from disease-specific CushingQOL scores. The function may be useful in calculating EQ-5D scores when EQ-5D data have not been gathered directly in a study.
Cushing’s syndrome; Mapping; Questionnaire; Quality of life; EQ-5D
Limited research in health valuation analyzes samples with high proportions of racial/ethnic minorities within the United States. The primary objective was to explore patterns of health valuation across race/ethnicity using the Collaborative Psychiatric Epidemiology Surveys. A secondary objective was to analyze whether mental health disorder and immigrant status were associated with these estimates.
Health valuation questions using different metrics (time and money) were analyzed. Ordered logit models stratified across poor and moderate health tested differences by race/ethnicity, with mental health disorder and immigrant status as covariates.
Asians in moderate health and Latinos were willing to pay more for health than non-Latino whites. Asians in moderate health were willing to trade more time for health. Latinos in poor health were less willing to trade time and gave disproportionate zero-trade responses. Lifetime history of anxiety disorder was positively associated with both metrics. Immigrant status confounded money valuation for Asians in moderate health, and time valuation for Latinos in poor health.
Health valuation estimates vary across race/ethnicity depending upon the metric. Time valuation scenarios appear less feasible for Latinos in poor health. More research is necessary to understand these differences and the role of immigrant status in health valuation.
Health valuation; Utilities; Racial/ethnic minorities; Mental health
To examine the association of affective experience and health-related quality of life in lung cancer patients, we hypothesized that negative affect would be positively, and positive affect would be negatively, associated with perceived health.
A sample of 133 English-speaking lung cancer patients (33% female; mean age = 63.68 years old, SD = 9.37) completed a battery of self-report surveys.
Results of our secondary analysis indicate that trait negative affect was significantly associated with poor physical and social functioning, greater role limitations due to emotional problems, greater bodily pain, and poor general health. Positive affect was significantly associated with adaptive social functioning, fewer emotion-based role limitations, and less severe bodily pain. In a full model, positive affect was significantly associated with greater levels of social functioning and general health, over and above the effects of negative affect.
Reduction of negative affect is an important therapeutic goal, but the ability to maintain positive affect may result in greater perceived health. Indeed, engagement in behaviors that result in greater state positive affect may, over time, result in dispositional changes and enhancement of quality of life.
Positive and negative affect; Perceived health; Role limitations; Lung cancer; Oncology
The objective of this qualitative study was to develop the items and support the content validity of the PedsQL™ Sickle Cell Disease Module for pediatric patients with sickle cell disease (SCD).
The iterative process included multiphase qualitative methodology. A literature review on SCD was conducted to generate domains of interest for the individual in-depth interviews. Ten healthcare experts with clinical experience in SCD participated in the development of the conceptual framework. A total of 13 pediatric patients with SCD ages 5–18 and 18 parents of patients ages 2–18 participated in the individual in-depth interviews. A total of 33 pediatric patients with SCD ages 5–18 and 39 parents of patients ages 2–18 participated in individually conducted cognitive interviews that included both think aloud and cognitive debriefing techniques to assess the interpretability and readability of the item stems.
Six domains were derived from the qualitative methods involving patient/parent interviews and expert opinion, with content saturation achieved, resulting in 48 items. The six domains consisted of items measuring Pain Intensity/Location (9 items), Pain Interference (11 items), Worry (7 items), Emotions (3 items), Disease Symptoms/Treatment, (12 items), and Communication (6 items).
Qualitative methods involving pediatric patients and parents in the item development process support the content validity for the PedsQL™ SCD Module. The PedsQL™ SCD Module is now undergoing national multisite field testing for the psychometric validation phase of instrument development.
Sickle cell disease; PedsQL™; Health-related quality of life; Patient-reported outcomes; Pediatrics; Qualitative methods