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1.

Purpose

The Profile of Mood States-Short Form (POMS-SF) is a well-validated tool commonly used in medical/clinical research. Less attention has been paid to the measurement invariance of the POMS—the degree to which the structure and items behave similarly for different groups (e.g., women and men). This study investigated the measurement invariance of the POMS Depression subscale across gender groups in a sample of cancer survivors.

Methods

The POMS Depression subscale has 8 items (Unhappy, Sad, Blue, Hopeless, Discouraged, Miserable, Helpless, and Worthless). Invariance was measured using multigroup confirmatory factor analysis. This study used data from American Cancer Society Studies of Cancer Survivors-II, a population-based survey of adult cancer survivors (n = 9170).

Results

We found factor structures and factor loadings were invariant for gender groups, but moderate differential item functioning (DIF) in the question containing the word blue.

Conclusion

With regard to cancer survivors’ gender, we found the Depression subscale of the POMS-SF had configural invariance, and partial metric and scalar invariance. This suggests that results should be interpreted with caution, especially when gender is considered important. More broadly, our finding suggests that questions with the word blue may introduce DIF into other measures of depressive mood. More research is needed to replicate these findings in other samples and with other instruments.
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2.

Background

Individualized measures of health-related quality life (HRQL) have been used for decades and shown to provide unique information, but little work has been done to explain this uniqueness particularly across health conditions.

Aims

To estimate, across four health conditions, the magnitude of the association between scores derived from the Patient Generated Index (PGI) and those from fully standardized generic and disease-specific measures of the HRQL; to identify the extent to which the areas generated from the PGI are covered by the content of the fully standardized measures.

Methods

The PGI and other generic and disease-specific measures had been used in four different samples of people: stroke (n = 222), multiple sclerosis (MS; n = 185); advanced cancer (n = 173), and HIV+ (n = 690). Areas nominated on the PGI were harmonized to a standard nomenclature. Pearson correlations were estimated between PGI and other measures.

Results

Data from 1263 people indicated that PGI provided the lowest rating for HRQL across all health conditions. The areas nominated differed across conditions with walking/mobility: the most common for stroke (42%), work/school for MS (62%), health for HIV+ (97%), and fatigue for cancer (39%). Many of the aspects of health included in generic measures were not nominated using the PGI and vice versa. The highest correlations between the PGI and other measures were observed for people with MS, with correlations between 0.53 and 0.59; lowest correlations were observed for people with HIV and cancer, ≤0.33.

Discussion

The PGI scores reflect those aspects of quality of life that are important to patients in which they would most value an improvement. Heterogeneity in HRQL across health conditions is poorly discriminated using standardized measures. A “one-size-fits-all” approach to HRQL assessment may not provide the most useful representation of this important construct.
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3.
4.

Purpose

Long-term levodopa therapy and related fluctuating plasma concentrations are associated with between-dose periods of ‘off time’ resulting in substantial variation in symptoms and functioning throughout the day in people with Parkinson’s (PwP).

Methods

PwP across UK, France, Spain and Italy completed an online survey to explore: the impact of ‘off time’ on (1) health-related quality of life (HRQL) and (2) on functioning and ability to undertake usual activities; (3) the value of ‘off time’ relative to other factors associated with Parkinson’s through a stated preference discrete choice experiment (SPDCE).

Results

In total, 305 PwP completed the online survey. Overall mean HRQL (utility) score was significantly lower for ‘off time’ (0.37) than for ‘on time’ (0.60). All attributes within the SPDCE were significant predictors of treatment choice, although increased duration of ‘on time’ (per hour per day: odds ratio (OR) = 1.40) and predictability of ‘off time’ to within 30 min (OR = 1.42) were valued most highly.

Conclusions

‘On time’ and predictability of ‘off time’ are highly valued by PwP. Due to substantial diurnal variation of Parkinson’s symptoms, standard patient-reported outcome (PRO) assessments may not adequately capture the impact of ‘off time’ on HRQL and participation in daily activities.
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5.
6.

Purpose

The structural equation modeling (SEM) approach for detection of response shift (Oort in Qual Life Res 14:587–598, 2005. doi: 10.1007/s11136-004-0830-y) is especially suited for continuous data, e.g., questionnaire scales. The present objective is to explain how the SEM approach can be applied to discrete data and to illustrate response shift detection in items measuring health-related quality of life (HRQL) of cancer patients.

Methods

The SEM approach for discrete data includes two stages: (1) establishing a model of underlying continuous variables that represent the observed discrete variables, (2) using these underlying continuous variables to establish a common factor model for the detection of response shift and to assess true change. The proposed SEM approach was illustrated with data of 485 cancer patients whose HRQL was measured with the SF-36, before and after start of antineoplastic treatment.

Results

Response shift effects were detected in items of the subscales mental health, physical functioning, role limitations due to physical health, and bodily pain. Recalibration response shifts indicated that patients experienced relatively fewer limitations with “bathing or dressing yourself” (effect size d = 0.51) and less “nervousness” (d = 0.30), but more “pain” (d = ?0.23) and less “happiness” (d = ?0.16) after antineoplastic treatment as compared to the other symptoms of the same subscale. Overall, patients’ mental health improved, while their physical health, vitality, and social functioning deteriorated. No change was found for the other subscales of the SF-36.

Conclusion

The proposed SEM approach to discrete data enables response shift detection at the item level. This will lead to a better understanding of the response shift phenomena at the item level and therefore enhances interpretation of change in the area of HRQL.
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7.

Purpose

The purpose of this study was to compare differences in health-related quality of life (HRQOL) between African-American female breast cancer survivors, African-American female survivors of other cancers, and African-American women with no history of cancer.

Methods

Using data from the 2010 National Health Interview Survey (NHIS), the HRQOL of African-American women aged 35 years or older was compared by cancer status. Physical and mental health items from the Patient-Reported Outcomes Measurement Information System (PROMIS) global health scale were used to assess differences in HRQOL.

Results

For summary physical and mental health measures, no significant differences were found between breast cancer survivors and women with no history of cancer; survivors of other cancers reported poorer physical and mental health than did women with no history of cancer. Similar differences were found at the item level. When we examined the two African-American female cancer survivor groups, we found that cancer survivors whose cancer was being treated reported substantially poorer physical health and mental health than did those whose cancer was not being treated. Survivors who had private insurance and were cancer free reported better physical and mental health than did those who did not have private insurance and those who were not cancer free. Breast cancer survivors reported slightly better physical and mental health than did survivors of other cancers.

Conclusions

Our findings highlight the need for public health agencies to adopt practices to improve the mental and physical health of African-American female survivors of cancer.
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8.

Introduction

Given considerable focus on health outcomes among childhood cancer survivors, we aimed to explore whether survivor bias is apparent during long-term follow-up of childhood cancer survivors.

Methods

We identified all 1-year survivors of cancer diagnosed before 20 years of age in Denmark, Finland, Iceland, and Sweden. From the general population, we randomly sampled a comparison cohort. Study individuals were followed for hospitalizations for diseases of the gastroenterological tract, endocrine system, cardiovascular system, or urinary tract from the start of the cancer registries to 2010. We estimated cumulative incidence with death as competing risk and used threshold regression to compare the hazards of the diseases of interest at ages 20, 40, 60, and 75 years.

Results

Our study included 27,007 one-year survivors of childhood cancer and 165,620 individuals from the general population. The cumulative incidence of all four outcomes was higher for childhood cancer survivors during early adulthood, but for three outcomes, the cumulative incidence was higher for the general population after age 55 years. The hazard ratios (HRs) decreased for all outcomes with increasing age, and for two of the outcomes, the hazards were higher for the general population at older ages (endocrine diseases: age-specific HRs = 3.0, 1.4, 1.0, 0.87; Cardiovascular diseases: age-specific HRs = 4.1, 1.4, 0.97, 0.84).

Conclusions

Our findings provide empirical evidence that survivor bias attenuates measures of association when comparing survivors with the general population. The design and analysis of studies among childhood cancer survivors, particularly as this population attains older ages, should account for survivor bias to avoid misinterpreting estimates of disease burden.
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9.

Purpose

We examined the main and interactive effects of race, BMI, and social support on physical and mental health-related quality of life (HRQoL) among male and female cancer survivors using the stress and coping theory to inform findings.

Methods

HRQoL issues among 1768 cancer survivors were examined using the American Cancer Society’s cross-sectional Study of Cancer Survivors II. Two-step multiple linear regressions were conducted to assess the physical and mental HRQoL of male and female cancer survivors, respectively.

Results

The average age of participants was 67.36 (SD = 11.51); the majority were female (53.3 %; n = 941) and non-Hispanic White (85.9 %; n = 1517). The average BMI measurement for participants was 28.33 (SD = 5.90), with 41.3 % (n = 729) overweight and 30.3 % (n = 535) obese. Higher BMI was significantly associated with lower physical HRQoL across gender, while social support had significant main effects on physical and mental HRQoL across gender. Race moderated the relationship between social support and physical HRQoL among female cancer survivors and between BMI and mental HRQoL for both genders.

Conclusions

The results of this study contribute a unique gender- and racial-specific perspective to cancer survivorship research. While the buffering hypothesis of the stress and coping theory was not supported, the main effects of BMI and social support on HRQoL were different across gender and race.
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10.

Objectives

Physical activity (PA) is associated with health-related quality of life (HRQL). The specific PA types that provide beneficial effects in an older population remain unclear. We assessed the association of total PA, walking, cycling, domestic work, sports and gardening with HRQL in middle-aged and elderly adults.

Design

Cross-sectional study.

Setting

Rotterdam, the Netherlands.

Participants

5,554 participants, with a mean age of 69 years.

Measurements

Total PA was categorized in five groups to evaluate the dose-response effect of PA and specific PA types were categorized in tertiles. HRQL was measured with the EuroQoL 5-dimension. The outcome of every HRQL domain (i.e. mobility, self-care, daily activities, pain and mood) was expressed as having any problems versus not having problems. Logistic and linear regression analyses were used, adjusting for confounders, to examine associations of total PA and PA types with HRQL domains.

Results

In both middle-aged (<65 years) and elderly adults (>65 years), we found a dose-response association between total PA and better HRQL (i.e. lower odds of having problems in HRQL domains). In the middle-aged, sports was the only PA type associated with lower odds of having problems with all HRQL domains. In the elderly, all PA types were associated with less problems with HRQL domains, but cycling contributed most to the beneficial effect.

Conclusions

Total PA was associated with better HRQL. Sports and cycling were the activity types that contributed most to this association in the middle-aged and elderly, respectively. Since PA levels tend to decline with aging, cycling and sports should be promoted with the aim to improve HRQL.
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11.

Purpose

Ambivalence over emotional expression (AEE) is the inner conflict of desiring emotion expression and fearing consequence of emotion expression. Few studies to date have examined the effects of AEE within an ethnic group that prioritizes emotional self-control. The present study examined the associations between AEE and well-being (viz., quality of life and depressive symptoms) as a function of acculturation among a sample of Chinese American breast cancer survivors.

Methods

Ninety-six Chinese breast cancer survivors (M age = 54.64 years old, SD = 7.98) were recruited from Southern California. Participants filled out a paper-pen questionnaire containing the Ambivalence over Emotional Expression Questionnaire (AEQ), the Functional Assessment of Cancer Therapy-Breast (FACT-B), and the Center for Epidemiologic Studies Depression Scale—Short Form (CESD-10).

Results

Acculturation was a statistically significant moderator of the relations between AEE and depressive symptoms, and a statistically marginally significant moderator of the relations between AEE and quality of life. Simple slopes revealed that AEE was negatively associated with quality of life (B = ?.45, p < .001) and depressive symptoms (B = .20, p < .001) for women with high acculturation, but not associated for women with low acculturation (Bs = ?.15 and .04, ps > .05, for quality of life and depressive symptoms, respectively).

Conclusions

These results suggest that less acculturated Chinese breast cancer survivors are protected by Chinese cultural values of emotional self-control and restraint, and thus do not experience the detrimental effects of AEE on their depressive symptoms and quality of life. Implications are discussed.
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12.

Purpose

To identify the impact of clinical and socio-economic determinants on quality of life (QoL) among breast cancer (BC) survivors 5 years after diagnosis.

Methods

A cross-sectional survey was conducted in women diagnosed in 2007 for primary invasive non-metastatic BC and identified through the Côte d’Or BC registry. QoL was assessed with the Medical Outcomes Study 12-item Short Form Health Survey (SF-12), the European Organization for Research and Treatment of Cancer Quality of Life (EORTC-QLQ-C30) and the breast cancer (EORTC-QLQ-BR23) questionnaires. Social support was assessed with Sarason’s social support questionnaire, and deprivation was assessed by the EPICES questionnaire. Clinical variables were collected through the registry database. Determinants of QoL were identified using multivariable mixed model analysis for each SF-12 dimension. A sensitivity analysis was conducted with multiple imputations on missing data.

Results

Overall, 188 patients on 319 patients (59 %) invited to participate to the survey completed the questionnaires. Five years after breast cancer diagnosis, the disease stages at diagnosis, as well as the treatment received, were not determinants of QoL. Only the age at diagnosis and comorbidities were found to be determinants of QoL.

Conclusions

Five years after BC diagnosis, disease severity and the treatment received did not affect QoL.
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13.

Purpose

The aim of this 10-year follow-up study was to determine changes in health-related quality of life (HRQoL) over time among ambulatory persons with MS (PwMS) at the baseline using generic and disease-specific instruments.

Methods

Of 109 independently walking PwMS included in a population-based study in 2002, 77 (70.6 %) were re-assessed in 2012. HRQoL was captured using the 36-Item Short Form Survey Instrument (RAND-36), 15D instrument (15D), and the Multiple Sclerosis Quality of Life-54 (MSQOL-54). Repeated-measures ANOVA and effect size (ES) calculations (Cohen’s d) were used in the statistical analysis.

Results

The RAND-36 physical health composite score (p = 0.003, ES = 0.26) and 15D total score (p = 0.012, ES = 0.25) declined from the baseline levels. In particular, lower scores were observed on the RAND-36 scales of physical functioning (p = 0.001, ES = 0.27), pain (p = 0.020, ES = 0.25), and general health perceptions (p = 0.002, ES = 0.36), on the MSQOL-54 scales of physical functioning (p = 0.001, ES = 0.27), pain (p = 0.040, ES = 0.21), sexual functioning (p = 0.003, ES = 0.43), and satisfaction with sexual functioning (p = 0.012, ES = 0.38), and in the 15D dimensions of mobility (p = 0.004, ES = 0.31) and sexual functioning (p ≤ 0.001, ES = 0.59). Improvement was observed on the RAND-36 scale of social functioning (p = 0.049, ES = 0.25). The other composite scores, scales, and dimensions remained unchanged.

Conclusion

The results of this study suggest that ambulatory PwMS at baseline reported reduced HRQoL in physical functioning after a 10-year follow-up period, while emotional well-being was maintained and social functioning improved. The scores in the other HRQoL dimensions and scales remained unchanged. More long-term population-based studies are needed to precisely determine the development of HRQoL among PwMS.
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14.
15.

Purpose

Most women are diagnosed with breast cancer when they are of working age. How long are breast cancer patients absent? How many of them return to work?

Methods

ArboNed Occupational Health Services documents sickness absence data of 1 million workers of whom 40% were women. Between 2001 and 2005, 2,259 women had 2,361 episodes of sickness absence due to breast cancer. These absence episodes were followed for 2 years using Kaplan–Meier analysis.

Results

The mean ± standard error of mean duration of absence due to breast cancer was 349 ± 5 days. Thirty-seven percent of absences lasted longer than one year and 12% of absences lasted longer than 2 years particularly in women aged 25–34 years.

Conclusions

The mean duration of sickness absence due to breast cancer was nearly a year, but most women returned to work. The results of the study can be used as a reference for return to work of women following breast cancer.
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16.

Purpose

To examine the relative impact of 16 common chronic conditions and increasing morbidity on health-related quality of life (HRQL) in a population-based sample of home care clients in Ontario, Canada.

Methods

Participants were adult clients assessed with the Resident Assessment Instrument for Home Care (RAI-HC) between January and June 2009 and diagnosed with one (or more) of 16 common chronic conditions. HRQL was evaluated using the Minimum Data Set-Health Status Index (MDS-HSI), a preference-based measure derived from items captured in the RAI-HC. Multivariable linear regression models assessed the relative impact of each condition, and increasing number of diagnoses, on MDS-HSI scores.

Results

Mean (SD) MDS-HSI score in the study population (n = 106,159) was 0.524 (0.213). Multivariable analysis revealed a statistically significant (p < 0.05) and clinically important (difference ≥ 0.03) decrease in MDS-HSI scores associated with stroke (?0.056), osteoarthritis (?0.036), rheumatoid arthritis (?0.033) and congestive heart failure (CHF, ?0.030). Differences by age and sex were observed; most notably, the negative impact associated with dementia was greater among men (?0.043) than among women (?0.019). Further, HRQL decreased incrementally with additional diagnoses. In all models, chronic conditions and number of diagnoses accounted for a relatively small proportion of the variance observed in MDS-HSI.

Conclusion

Clinically important negative effects on HRQL were observed for clients with a previous diagnosis of stroke, osteo- and rheumatoid arthritis, or CHF, as well as with increasing levels of multimorbidity. Findings provide baseline preference-based HRQL scores for home care clients with different diagnoses and may be useful for identifying, targeting and evaluating care strategies toward populations with significant HRQL impairments.
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17.

Purpose

Health-related quality of life measurements are gaining in importance in clinical medicine. Little is known about the long-term quality of life changes after septorhinoplasty. This study was designed to analyse the long-term quality of life impacts of septorhinoplasty, using disease-specific instruments—rhinoplasty outcome evaluation (ROE) and Functional Rhinoplasty Outcome Inventory-17 (FROI-17); as well as a generic instrument—Short-Form 36 Health Survey (SF-36).

Methods

Patients completed the FROI-17, the ROE and the SF-36 preoperatively and at 12 and 60 months postoperatively. General demographic and clinical information (age, gender, allergies, medication, medical and surgical history) were collected from all patients.

Results

We report a significant increase in disease-specific QOL after primary septorhinoplasty (as measured with the ROE & FROI-17) and in two scales of the SF-36 generic instrument (role-functioning physical and mental health) 1 year after surgery. Our patients showed further significant increase in disease-specific QOL (FROI-17) after their primary septorhinoplasty (1 year vs. 5 years postoperatively). SF-36 results showed significant improvements 5 years postoperatively (compared to preoperative scores) in six out of eight scales (physical functioning, role-functioning physical, bodily pain, vitality, social functioning and mental health).

Conclusion

Septorhinoplasty can improve disease-specific and non-disease-specific QOL in the short- and long-term postoperative period. These improvements remain measurable 5 years after surgery.
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18.

Objective

The objective of the present study is to describe the extension of the National Institutes of Health Patient-Reported Outcomes Measurement Information System (PROMIS®) pediatric parent proxy-report item banks for parents of children ages 5–7 years, and to investigate differential item functioning (DIF) between the data obtained from parents of 5–7-year-old children with the data obtained from parents of 8–17 year-old children in the original construction of the scales.

Methods

Item response theory (IRT) analyses of DIF were conducted comparing data from the 5–7 age group with data from the established scales for ages 8–17 across 5 generic health domains (physical functioning, pain, fatigue, emotional health, and social health) and asthma.

Results

IRT DIF analyses revealed that the majority of the items functioned similarly with responses from parents of younger and older children. A small number of items were removed from the item bank for younger children, and a few items that exhibited statistical DIF were retained in the pools with the caveat that they should not be used in studies that involve comparisons of younger children with older children.

Conclusions

The study confirms that most of the items in the PROMIS parent proxy-report item banks can be used with parents of children ages 5–7. It is anticipated that these new scales will have application for younger pediatric populations when pediatric self-report is not feasible.
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19.

Objective

To examine the extent to which mindfulness skills influence psychological distress and health-related quality of life (HRQOL) in men with metastatic or castration-resistant biochemical progression of prostate cancer.

Patients and methods

A cross-sectional survey of 190 men (46 % response; mean age 71 years, SD = 8.7, range 40–91 years) with advanced prostate cancer, assessed psychological and cancer-specific distress, HRQOL. Mindfulness skills were assessed as potential predictors of adjustment outcomes.

Results

Overall, 39 % of men reported high psychological distress. One third had accessed psychological support previously although only 10 % were under current psychological care. One quarter had accessed a prostate cancer support group in the past six months.Higher HRQOL and lower cancer-specific and global psychological distress were related to non-judging of inner experience (p < 0.001).Higher HRQOL and lower psychological distress were related to acting with awareness (p < 0.001). Lower distress was also related to higher non-reactivity to inner experience and a lower level of observing (p < 0.05).

Conclusions

Men with advanced prostate cancer are at risk of poor psychological outcomes. Psychological flexibility may be a promising target for interventions to improve adjustment outcomes in this patient group.

Clinical Trial Registry

Trial Registration: ACTRN12612000306819
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20.

Purpose

Prior studies suggest that specialist care associates with improved health-related quality of life (HRQL) in asthmatic patients. However, there are limited studies focused on differences in HRQL among subspecialties. The aim of this study was to assess the differences in HRQL between adult asthmatic patients treated in pneumology or allergy practices, and to estimate to what extent the differences in HRQL can be explained by sociodemographic, clinical or psychological characteristics of patients from each specialty.

Methods

We recruited adult asthmatic outpatients from allergy and pneumology practices. Information on sociodemographic, clinical and psychological characteristics was collected, and HRQL was assessed with generic and disease-specific questionnaires. HRQL was compared between groups adjusting for sociodemographic, clinical and psychological characteristics.

Results

A total of 287 asthmatic patients participated in the study (105 from pneumology and 182 from allergy). Patients treated by pneumologists reported significantly poorer HRQL in physical dimensions of generic questionnaire and all dimensions of disease-specific questionnaire. Pneumology patients were older (p < .001) and had a lower education level (p < .001); a higher number of patients were in a non-active employment situation (p = .003) and had worse pulmonary function (p < .001), longer duration of disease (p = .020), higher prevalence of obesity (p < .001) and uncontrolled asthma (p < .001), and a higher rate of previous absenteeism (p = .001). Depression and the use of cognitive avoidance coping were also higher among pneumology patients (p = .050 and p = .022, respectively). There were not significant differences in HRQL between pneumology and allergy patients after adjustment for these sociodemographic, clinical and psychological characteristics.

Conclusions

Asthmatic patients treated by pneumologists reported poorer HRQL than patients treated by allergists, but this outcome is attributed to differences in several sociodemographic, clinical and psychological characteristics between the two groups of patients.
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