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1.  [No title available] 
PMCID: PMC3825836  PMID: 23743855
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PMCID: PMC3849217  PMID: 23740167
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PMCID: PMC3852145  PMID: 23836435
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PMCID: PMC3834226  PMID: 23760529
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PMCID: PMC3883886  PMID: 23824606
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PMCID: PMC3883907  PMID: 23771709
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PMCID: PMC3890371  PMID: 23709097
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PMCID: PMC3910422  PMID: 23877585
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PMCID: PMC3961825  PMID: 23722635
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PMCID: PMC4295627  PMID: 22476611
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PMCID: PMC4291119  PMID: 22286223
12.  Mindfulness: A systematic review of instruments to measure an emergent patientreported outcome (PRO) 
Mindfulness has emerged as an important health concept based on evidence that mindfulness interventions reduce symptoms and improve health-related quality of life. The objectives of this study were to systematically assess and compare the properties of instruments to measure self-reported mindfulness.
Ovid Medline®, CINAHL®, and PsycINFO® were searched through May 2012, and articles were selected if their primary purpose was development or evaluation of the measurement properties (validity, reliability, responsiveness) of a self-report mindfulness scale. Two reviewers independently evaluated the methodological quality of the selected studies using the COnsensus-based Standards for the selection of health status Measurement INstruments (COSMIN) checklist. Discrepancies were discussed with a third reviewer, and scored by consensus. Finally, a level of evidence approach was used to synthesize results and study quality.
Our search strategy identified a total of 2,588 articles. Forty-six articles, reporting 79 unique studies, met inclusion criteria. Ten instruments quantifying mindfulness as a unidimensional scale (n=5) or as a set of 2 to 5 subscales (n=5) were reviewed. The Mindful Attention Awareness Scale (MAAS) was evaluated by the most studies (n=27), and had positive overall quality ratings for most of the psychometric properties reviewed. The Five Facet Mindfulness Questionnaire (FFMQ) received the highest possible rating (“consistent findings in multiple studies of good methodological quality”) for two properties, internal consistency and construct validation by hypothesis testing. However, none of the instruments had sufficient evidence of content validity. Comprehensiveness of construct coverage had not been assessed; qualitative methods to confirm understanding and relevance were absent. In addition, estimates of test-retest reliability, responsiveness, or measurement error to guide users in protocol development or interpretation of scores were lacking.
Current mindfulness scales have important conceptual differences, and none can be strongly recommended based solely on superior psychometric properties. Important limitations in the field are the absence of qualitative evaluations and accepted external referents to support construct validity. Investigators need to proceed cautiously before optimizing any mindfulness intervention based on the existing scales.
PMCID: PMC3745812  PMID: 23539467
Mindfulness; Instruments; Psychometrics; Measurement properties; COSMIN checklist; Systematic review
13.  An Examination of the PROMIS® Pediatric Instruments to Assess Mobility in Children with Cerebral Palsy 
The Patient Reported Outcomes Measurement Information System (PROMIS®) provides adult and pediatric self-report measures of health-related quality of life designed for use across medical conditions and the general population. The purpose of this study was to examine the feasibility and validity of the PROMIS® pediatric short form and computer adaptive test (CAT) mobility measures in children with cerebral palsy (CP).
Eighty-two children with CP completed self-report (PROMIS® Mobility Short Form, PROMIS® Mobility CAT, Pediatric Quality of Life Inventory™) and performance-based assessments of mobility (Timed Up-and-Go, Gross Motor Function Measure). Parents provided three proxy reports of child mobility (Pediatric Outcomes Data Collection Instrument, Functional Assessment Questionnaire, Shriners Hospitals for Children CP-CAT). Validity of PROMIS® instruments was examined through correlations with other measures and “known groups” analyses determined by Gross Motor Function Classification System (GMFCS).
On average, the PROMIS® CAT required less than seven items and two minutes to administer. Both PROMIS® measures showed moderate to high correlations with child- and parent-proxy report of child mobility; correlations with performance-based measure were small for the PROMIS® Short Form and non-significant for the PROMIS® CAT. All measures except for the PROMIS® CAT were able to distinguish between GMFCS categories.
Results support the convergent and discriminant validity of the pediatric PROMIS® Mobility Short Form in children with CP. The PROMIS® Mobility CAT correlates well with child- and parent-report of mobility but not with performance-based measures and does not differentiate between known mobility groups.
PMCID: PMC3758380  PMID: 23543391
cerebral palsy; PROMIS®; mobility; computer adaptive test; validity
14.  Using the EORTC QLQ-C30 in Clinical Practice for Patient Management: Identifying Scores Requiring a Clinician’s Attention 
Patient-reported outcomes (PROs) are used increasingly for individual patient management. Identifying which PRO scores require a clinician’s attention is an ongoing challenge. Previous research used a needs assessment to identify EORTC-QLQ-C30 cut-off scores representing unmet needs. This analysis attempted to replicate the previous findings in a new and larger sample.
This analysis used data from 408 Japanese ambulatory breast cancer patients who completed the QLQ-C30 and Supportive Care Needs Survey-Short Form-34 (SCNS-SF34). Applying the methods used previously, SCNS-SF34 item/domain scores were dichotomized as no vs. some unmet need. We calculated area under the receiver operating characteristic curve (AUC) to evaluate QLQ-C30 scores’ ability to discriminate between patients with no vs. some unmet need based on SCNS-SF34 items/domains. For QLQ-C30 domains with AUC≥0.70, we calculated the sensitivity, specificity, and predictive value of various cut-offs for identifying unmet needs. We hypothesized that compared to our original analysis (1) the same six QLQ-C30 domains would have AUC≥0.70, (2) the same SCNS-SF34 items would be best discriminated by QLQ-C30 scores, and (3) the sensitivity and specificity of our original cut-off scores would be supported.
The findings from our original analysis were supported. The same six domains with AUC≥0.70 in the original analysis had AUC≥0.70 in this new sample, and the same SCNS-SF34 item was the best discriminated by QLQ-C30 scores. Cut-off scores were identified with sensitivity≥0.84 and specificity≥0.54.
Given these findings’ concordance with our previous analysis, these QLQ-C30 cut-offs could be implemented in clinical practice and their usefulness evaluated.
PMCID: PMC3843980  PMID: 23532341
EORTC QLQ-C30; patient-reported outcomes; clinical practice; cancer
15.  A Mixed Method Exploration of Survivorship among Chinese American and Non-Hispanic White Breast Cancer Survivors: The Role of Socioeconomic Well-Being 
Cancer-related stress is heavily influenced by culture. This study explored similarities and differences in survivorship care concerns among Chinese American and Non-Hispanic White (NHW) breast cancer survivors.
A sequential, mixed-method design (inductive/qualitative research-phase I and deductive/quantitative research-phase II) was employed. Eligible women identified from the Greater Bay Area Cancer Registry were age ≥21, diagnosed with stage 0-IIa breast cancer between 2006–2011, and had no recurrence or other cancers. In phase I, we conducted 4 Chinese (n=19) and 4 NHW (n=22) focus groups, and 31 individual telephone interviews (18 Chinese immigrants, 7 Chinese US-born, and 6 NHW). Content analysis was conducted to examine qualitative data. In phase II, another 296 survivors (148 NHW age-matched to 148 Chinese cases) completed a cross-sectional survey. Descriptive statistics and linear regression analysis were conducted to examine quantitative data.
Qualitative data revealed “socioeconomic wellbeing” (SWB) as a dominant survivorship concern, which was operationalized as a cancer survivor’s perceived economic and social resources available to access care. Quantitative data showed that low-acculturated Chinese immigrants reported the poorest SWB, controlling for covariates. Highly-acculturated Chinese immigrants and the US-born Chinese/NHW group reported similar SWB. Women who had low income levels or chemotherapy had poorer SWB.
SWB emerged as an important aspect of breast cancer survivorship. Immigration stress, cancer care costs, and cultural values all contributed to immigrants’ socioeconomic distress. Immigrant and US-born breast cancer survivors experienced different socioeconomic circumstances and well-being following treatment. Our findings warrant further investigation of socioeconomic distress and survivorship outcomes.
PMCID: PMC3855903  PMID: 23591710
Socioeconomic well-being; Mixed-method; Cancer survivorship; Ethnicity; Chinese Americans; Acculturation
16.  Development of a vision-targeted health-related quality of life item measure 
To develop a vision-targeted health-related quality of life (HRQOL) measure for the NIH Toolbox for the Assessment of Neurological and Behavioral Function.
We conducted a review of existing vision-targeted HRQOL surveys and identified color vision, low luminance vision, distance vision, general vision, near vision, ocular symptoms, psychosocial well-being, and role performance domains. Items in existing survey instruments were sorted into these domains. We selected non-redundant items and revised them to improve clarity and to limit the number of different response options. We conducted 10 cognitive interviews to evaluate the items. Finally, we revised the items and administered them to 819 individuals to calibrate the items and estimate the measure’s reliability and validity.
The field test provided support for the 53-item vision-targeted HRQOL measure encompassing 6 domains: color vision, distance vision, near vision, ocular symptoms, psychosocial well-being, and role performance. The domain scores had high levels of reliability (coefficient alphas ranged from 0.848 to 0.940). Validity was supported by high correlations between National Eye Institute Visual Function Questionnaire scales and the new-vision-targeted scales (highest values were 0.771 between psychosocial well-being and mental health, and 0.729 between role performance and role difficulties), and by lower mean scores in those groups self-reporting eye disease (F statistic with p < 0.01 for all comparisons except cataract with ocular symptoms, psychosocial well-being, and role performance scales).
This vision-targeted HRQOL measure provides a basis for comprehensive assessment of the impact of eye diseases and treatments on daily functioning and well-being in adults.
PMCID: PMC3722299  PMID: 23475688
Vision-related quality of life; NIH Toolbox; Instrument development; Instrument psychometric evaluation and calibration
17.  Development and validation of the positive affect and well-being scale for the neurology quality of life (Neuro-QOL) measurement system 
To develop and validate an item-response theory-based patient-reported outcomes assessment tool of positive affect and well-being (PAW). This is part of a larger NINDS-funded study to develop a health-related quality of life measurement system across major neurological disorders, called Neuro-QOL.
Informed by a literature review and qualitative input from clinicians and patients, item pools were created to assess PAW concepts. Items were administered to a general population sample (N = 513) and a group of individuals with a variety of neurologic conditions (N = 581) for calibration and validation purposes, respectively.
A 23-item calibrated bank and a 9-item short form of PAW was developed, reflecting components of positive affect, life satisfaction, or an overall sense of purpose and meaning. The Neuro-QOL PAW measure demonstrated sufficient unidimensionality and displayed good internal consistency, test–retest reliability, model fit, convergent and discriminant validity, and responsiveness.
The Neuro-QOL PAW measure was designed to aid clinicians and researchers to better evaluate and understand the potential role of positive health processes for individuals with chronic neurological conditions. Further psychometric testing within and between neurological conditions, as well as testing in non-neurologic chronic diseases, will help evaluate the generalizability of this new tool.
PMCID: PMC3855608  PMID: 23526093
Positive affect; Psychological well-being; Quality of life; Measurement; Patient-reported outcomes; Neurological conditions
18.  Development and Psychometric Properties of the PROMIS® Pediatric Fatigue Item Banks 
This paper reports on the development and psychometric properties of self-reported pediatric fatigue item banks as part of the Patient Reported Outcomes Measurement Information System (PROMIS).
Candidate items were developed by using PROMIS qualitative methodology. The resulting 39 items (25 tiredness- and 14 energy-related) were field tested in a sample that included 3,048 participants aged 8–17 years. We used confirmatory factor analysis (CFA) to evaluate dimensionality, differential item functioning (DIF) analysis to evaluate parameter stability between genders and by age; we examined residual correlations to evaluate local dependence (LD) among items, and estimated the parameters of item response theory (IRT) models.
Of 3,048 participants, 48% were males, 60% were white and 23% had at least one chronic condition. CFA results suggest two moderately correlated factors. Two items were removed due to high LD, and three due to gender-based DIF. Two item banks were calibrated separately using IRT: Tired and (Lack of) Energy, which consisted of 23 and 11 items, respectively; ten- and 8-item short-forms were created.
The PROMIS assessment of self-reported fatigue in pediatrics includes two item banks: Tired and (Lack of) Energy. Both demonstrated satisfactory psychometric properties and can be used for research settings.
PMCID: PMC3695011  PMID: 23378106
PROMIS; Fatigue; Children; Item Response Theory; Health-related Quality of Life; Patient Reported Outcomes
19.  Using group-based trajectory modeling to examine heterogeneity of symptom burden in patients with head and neck cancer undergoing aggressive non-surgical therapy 
Treatment-related symptom burden varies significantly among patients undergoing radiotherapy or chemoradiotherapy, yet such variation is typically not reflected in the results from single-group studies. We applied group-based trajectory modeling (GBTM) to describe the heterogeneity of symptom burden among patients with head and neck cancer and to identify subgroups with distinct symptom development trajectories.
Patients (n = 130) were recruited pretherapy, and rated multiple symptoms weekly for 10 weeks via the M. D. Anderson Symptom Inventory. With the mean of five most-severe symptoms over time as an outcome measure, GBTM was used to identify patient subgroups with distinct symptom trajectories. Linear mixed-effects modeling (LMM) was applied to compare with GBTM’s ability to describe the longitudinal symptom data.
The five most-severe symptoms were: problems with taste, difficulty swallowing or chewing, problems with mucus, fatigue, and dry mouth. A two-group GBTM model identified 68% of patients as having high symptom burden, associated with older age, worse baseline performance status, and chemoradiotherapy treatment. A four-group GBTM model generated one stable group (4% of patients) and three groups varying in symptom severity with both linear and quadratic functions over time. LMM revealed symptom-change patterns similar to that produced by GBTM but was inferior in identifying risk factors for high symptom burden.
For cancer patients undergoing aggressive therapy, GBTM is capable of identifying various symptom-burden trajectories and provides severity groupings that will aid research and may be of clinical utility. These results may be generalizable to other cancer types and treatments.
PMCID: PMC3718875  PMID: 23475689
symptom burden; group-based trajectory model; head and neck cancer; MDASI
20.  Increases in physical activity may affect quality of life differently in men and women: The PACE project 
Obesity is associated with impaired quality of life (QoL), but less is known about physical activity. We investigated how decreases in body mass index (BMI) and increases in activity affect obesity-specific QoL and potential gender differences in associations.
In a large worksite-randomized trial of a multilevel intervention on diet and physical activity behaviors, we conducted a cohort analysis at two years of follow-up. Self-reported activity and Obesity and Weight-Loss Quality Of Life (OWLQOL) were analyzed for individual-level associations using linear mixed models accounting for random worksite effects.
Gender modified the BMI-OWLQOL relationship, so analyses were conducted for males and females separately. Adjusting for demographic confounders, baseline OWLQOL, and several worksite-level variables including intervention arm, a 1.9 unit decrease in BMI (the interquartile range) was associated with an OWLQOL increase of 1.7 (95% CI: 1.2, 2.2) in males and 3.6 (95% CI: 3.2, 4.0) in females. Similarly, a 23 unit increase in physical activity score was associated with an OWLQOL increase of 0.9 (95% CI: 0.5, 1.4) in males and 1.6 (95% CI: 1.0, 2.3) in females. Physical activity associations were attenuated when adjusting for change in BMI, but remained significant for women (mean BMI 27.8 kg/m2).
This is the first study to demonstrate that increasing physical activity may improve obesity-specific QoL to a greater extent in women, particularly among overweight women, independent of BMI. Results may inform the design of interventions tailored to women targeting well-being through messages of increasing physical activity.
PMCID: PMC3760977  PMID: 23504523
Body mass index; physical activity; quality of life; weight loss; women
22.  Patient-Reported Outcomes in the Practice-based Opportunities for Weight Reduction (POWER) Trial 
To evaluate effects of two behavioral weight loss interventions (in-person, remote) on health-related quality of life (HRQOL) compared to a control intervention.
415 obese US adults with at least one cardiovascular risk factor completed five measures of HRQOL and depression: MOS SF-12 physical component summary [PCS] and mental component summary [MCS]; EuroQoL 5-Dimensions [EQ-5D] single index and visual analog scale; PHQ-8 depression symptoms, and PSQI sleep quality scores at baseline and 6 and 24 months after randomization. Change in each outcome was analyzed using outcome-specific mixed effects models controlling for participant demographic characteristics.
PCS-12 scores over 24 months improved more among participants in the in-person active intervention arm than among control arm participants (P<0.05, ES = 0.21); there were no other statistically significant treatment arm differences in HRQOL change. Greater weight loss was associated with improvements in most outcomes (P<0.05 to <0.0001).
Participants in the in-person active intervention improved more in physical function HRQOL than participants in the control arm did. Greater weight loss during the study was associated with greater improvement in all PRO except for sleep quality, suggesting that weight loss is a key factor in improving HRQOL.
PMCID: PMC4137865  PMID: 23515902
weight reduction trial; comparative effectiveness trial; patient-reported outcomes; quality of life; depression
23.  Does abortion reduce self-esteem and life satisfaction? 
This study aims to assess the effects of obtaining an abortion versus being denied an abortion on self-esteem and life satisfaction.
We present the first 2.5 years of a 5-year longitudinal telephone-interview study that follows 956 women who sought an abortion from 30 facilities across the USA. We examine the self-esteem and life satisfaction trajectories of women who sought and received abortions just under the facility’s gestational age limit, of women who sought and received abortions in their first trimester of pregnancy, and of women who sought abortions just beyond the facility gestational limit and were denied an abortion. We use adjusted mixed effects linear regression analyses to assess whether the trajectories of women who sought and obtained an abortion differ from those who were denied one.
Women denied an abortion initially reported lower self-esteem and life satisfaction than women who sought and obtained an abortion. For all study groups, except those who obtained first trimester abortions, self-esteem and life satisfaction improved over time. The initially lower levels of self-esteem and life satisfaction among women denied an abortion improved more rapidly reaching similar levels as those obtaining abortions at 6 months to one year after abortion seeking. For women obtaining first trimester abortions, initially higher levels of life satisfaction remained steady over time.
There is no evidence that abortion harms women’s self-esteem or life satisfaction in the short term.
PMCID: PMC4186981  PMID: 24740325
Abortion; Self-esteem; Life satisfaction; Well-being
24.  Quality of life, human insecurity, and distress among Palestinians in the Gaza Strip before and after the Winter 2008–2009 Israeli war 
This study investigates changes in the quality of life (QoL) of Gaza Palestinians before and after the Israeli winter 2008–2009 war using the World Health Organization’s WHOQOL-Bref; the extent to which this instrument adequately measures changing situations; and its responsiveness to locally developed human insecurity and distress measures appropriate for context.
Ordinary least squares regression analysis was performed to detect how demographic and socioeconomic variables usually associated with QoL were associated with human insecurity and distress. We estimated the usual baseline model for the three QoL domains, and a second set of models including these standard variables and human insecurity and distress to assess how personal exposure to political violence affects QoL.
No difference between the quality of life scores in 2005 and 2009 was found, with results suggesting lack of sensitivity of WHOQOL-Bref in capturing changes resulting from intensification of preexisting political violence. Results show that human insecurity and individual distress significantly increased in 2009 compared to 2005.
Results indicate that a political domain may provide further understanding of and possibly increase the sensitivity of the instrument to detect changes in the Qol of Palestinians and possibly other populations experiencing intensified political violence.
PMCID: PMC4213857  PMID: 23479210
Quality of life; Distress; Human insecurity; Palestinians; Gaza strip; Comparing QoL
25.  Biological pathways, candidate genes and molecular markers associated with quality-of-life domains: an update 
There is compelling evidence of a genetic foundation of patient-reported QOL. Given the rapid development of substantial scientific advances in this area of research, the current paper updates and extends reviews published in 2010.
The objective is to provide an updated overview of the biological pathways, candidate genes and molecular markers involved in fatigue, pain, negative (depressed mood) and positive (well-being/happiness) emotional functioning, social functioning, and overall QOL.
We followed a purposeful search algorithm of existing literature to capture empirical papers investigating the relationship between biological pathways and molecular markers and the identified QOL domains.
Multiple major pathways are involved in each QOL domain. The inflammatory pathway has the strongest evidence as a controlling mechanism underlying fatigue. Inflammation and neurotransmission are key processes involved in pain perception and the COMT gene is associated with multiple sorts of pain. The neurotransmitter and neuroplasticity theories have the strongest evidence for their relationship with depression. Oxytocin-related genes and genes involved in the serotonergic and dopaminergic pathways play a role in social functioning. Inflammatory pathways, via cytokines, also play an important role in overall QOL.
Whereas the current findings need future experiments and replication efforts, they will provide researchers supportive background information when embarking on studies relating candidate genes and/or molecular markers to QOL domains. The ultimate goal of this area of research is to enhance patients’ QOL.
PMCID: PMC4199387  PMID: 24604075
biological pathways; genes; molecular markers; quality of life; patient-reported outcomes (PROs)

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