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Purpose: In surveys and in research, proxies such as family members may be used to assess patient health-related quality of life. The aim of this research is to help cancer researchers select a validated health-related quality of life tool if they anticipate using proxy-reported data.Methods: Systematic review and methodological appraisal of studies examining the concordance of paired adult cancer patient and proxy responses for multidimensional, validated HRQOL tools. We searched PubMed, CINAHL, PsycINFO and perused bibliographies of reviewed papers. We reviewed concordance assessment methods, results, and associated factors for each validated tool.Results: A total of 32 papers reporting on 29 study populations were included. Most papers were cross-sectional (N = 20) and used disease-specific tools (N = 19), primarily the FACT and EORTC. Patient and proxy mean scores were similar on average for tools and scales, with most mean differences <10 points but large standard deviations. Average ICCs for the FACT and EORTC ranged from 0.35 to 0.62, depending on the scale. Few papers (N = 15) evaluated factors associated with concordance, and results and measurement approaches were inconsistent. The EORTC was the most commonly evaluated disease-specific tool (N = 5 papers). For generic tools, both concordance and associated factor information was most commonly available for the COOP/WONCA (N = 3 papers). The MQOL was the most frequently evaluated end-of-life tool (N = 3 papers).Conclusions: Proxy and patient scores are similar on average, but there is large, clinically important residual variability. The evidence base is strongest for the EORTC (disease-specific tools), COOP/WONCA (generic tools), and MQOL (end-of-life-specific tools). [ABSTRACT FROM AUTHOR]

Purpose: This paper aims to estimate the comorbidity of mental disorders and chronic physical conditions and to describe the impact of these conditions on health-related quality of life (HRQoL) in a sample of older primary care (PC) attendees by gender.Methods: Cross-sectional survey, conducted in 77 PC centres in Catalonia (Spain) on 1192 patients over 65 years old. Using face-to-face interviews, we assessed HRQoL (SF-12), mental disorders (SCID and MINI structured clinical interviews), chronic physical conditions (checklist), and disability (Sheehan disability scale). We used multivariate quantile regressions to model which factors were associated with the physical component summary-short form 12 and mental component summary-short form 12.Result: The most frequent comorbidity in both men and women was mood disorder with chronic pain and arthrosis. Mental disorders mainly affected 'mental' QoL, while physical disorders affected 'physical' QoL. Mental disorders had a greater impact on HRQoL than chronic physical conditions, with mood and adjustment disorders being the most disabling conditions. There were some gender differences in the impact of mental and chronic physical conditions on HRQoL. Anxiety disorders and pain had an impact on HRQoL but only in women. Respiratory diseases had an effect on the MCS in women, but only affected the PCS in men.Conclusions: Mood and adjustment disorders had the greatest impact on HRQoL. The impact profile of mental and chronic physical conditions differs between genders. Our results reinforce the need for screening for mental disorders (mainly depression) in older patients in PC. [ABSTRACT FROM AUTHOR]

Purpose: To compare the associations of alcohol-related variables with Quality of Life (QoL) in depressed and non-depressed individuals of the general population.Methods: This cross-sectional study utilized data from the FINRISK 2007 general population survey. A subsample (n = 4020) was invited to participate in an interview concerning alcohol use. Of them, 2215 (1028 men, 1187 women; response rate 55.1%) were included in the analyses. Bivariate associations between mean weekly alcohol consumption, frequency of binge drinking, Alcohol Use Disorders Identification Test (AUDIT)-score and QoL were analysed according to categorization into depressed and non-depressed using the Beck Depression Inventory, Short Form. Linear regression models were calculated in order to determine the associations of the alcohol variables and QoL after adjusting for socio-demographic variables as well as somatic and mental illness.Results: Depressed individuals had lower mean QoL and higher AUDIT-scores than non-depressed respondents. Bivariate correlations showed that mean weekly alcohol consumption, frequency of binge drinking and AUDIT-scores were statistically significantly associated with impaired QoL in depressed individuals. Abstinence was not associated with QoL. After adjustment for covariates, frequency of binge drinking and AUDIT-score were statistically significantly associated with QoL in depressed individuals and AUDIT-score in the non-depressed group. When analysing all respondents regardless of depression, both AUDIT-score and binge drinking were associated with QoL.Conclusions: Of the alcohol-related variables, binge drinking and alcohol problems indicated by AUDIT-score contributed to impaired QoL in depressed individuals and both should be assessed as part of the clinical management of depression. [ABSTRACT FROM AUTHOR]

Purpose: Unpaid care is an important source of support of people with long-term conditions. Interdependence of carers' and care recipients' quality of life would be expected due to the relational nature of caregiving. This study aims to explore interdependence of quality of life in carer/care-recipient dyads, especially in relation to mutual interdependence due to social feedback in the caregiving relationship and also the partner effects of one partner's experience of long-term care support on the other's outcomes.Methods: Using data collected in an interview survey of 264 adults with care support needs and their unpaid carers in England, we employed regression analysis to explore whether there is mutual interdependence of care-related quality of life within carer/care-recipient dyads for three quality of life attributes: Control over daily life, Social participation and Occupation. The influence of factors, including satisfaction with long-term care, were also considered on individuals' and dyad partners' care-related quality of life.Results: We found mutual interdependence of quality of life at the dyad-level for Control over daily life, but not Occupation or Social participation. A partner effect of care recipients' satisfaction with long-term care on carers' Control over daily life was also observed. Higher care recipient satisfaction with care services was associated with higher Control over daily life. By contrast, for Social participation and Occupation, there were only significant effects of care recipients' satisfaction with long-term care and their own quality of life.Conclusions: These findings highlight the importance of considering the wider impact beyond the individual of long-term care on quality of life in the evaluation of long-term care policy and practice. [ABSTRACT FROM AUTHOR]

Aims: The purpose of this article is to describe the psychometric development of the Hemophilia Caregiver Impact measure.Methods: Qualitative interviews (n = 22) and a cross-sectional web-based study (n = 458) were implemented with caregivers of people with hemophilia. Classical test theory and item response theory analyses were implemented to evaluate the psychometric characteristics of the measure.Results: The study sample had a mean age of 39 and a median level of college education. It was predominantly female (88%), and had an average of two children. 85% of this study sample had at least one child with hemophilia. The final 36-item Hemophilia Caregiver Impact measure is composed of seven subscales assessing relevant negative aspects of caregiver impact (Burden Summary) as well as one subscale reflecting a positive aspect of caregiver impact (Positive Emotions). These two summary scores are orthogonal and can be used together in analyses examining negative and positive aspects of caregiver impact. The items included within each subscale reflect a unidimensional construct, demonstrate good item information and trace lines, and lack of local dependence. The resulting subscales demonstrate high reliability, and good construct validity. They show moderate incremental and discriminant validity.Conclusions: The Hemophilia Caregiver Impact measure is a useful new tool for clinical research on hemophilia. In addition to having eight relevant subscales, the measure can also be summarized with two scores. This versatility can be useful in analyzing studies with very small samples, which is to be expected when dealing with a rare condition like hemophilia. [ABSTRACT FROM AUTHOR]

Purpose: Chronic kidney disease (CKD) can place restrictions upon biopsychosocial development in children; consequently, assessment of self-reported quality of life (QoL) is important in patient evaluations. This research aimed to evaluate a generic and renal-specific self-report QoL scale, assess children's attitudes towards living with CKD and propose an appropriate tool for future individual clinical use or departmental audit.Methods: Seventy-one children (41 male, 30 female; mean age = 13.60 years, range = 6.00-18.96) with CKD completed the Generic Children's QoL Measure (GCQ), PedsQL 3.0 End Stage Renal Disease Module (PedsQL) and Child Attitude Toward Illness Scale (CATIS). Descriptive and cross-sectional analyses were performed, along with an examination of associations between scores on each measure.Results: The mean GCQ score for patients was comparable with normative data (p = 0.27). Generic QoL, disease-specific QoL and attitudes towards CKD did not vary by CKD stage, age, time since diagnosis or duration of current treatment. Gender was not associated with QoL, although males had more negative CATIS scores than females (p < 0.05). Pre-emptive transplant patients had more positive GCQ and PedsQL scores (p < 0.05 for each), but there was no relationship between treatment and CATIS scores. Scores on all scales were moderately correlated (r = 0.35-0.59), suggesting that clinicians may choose the most appropriate measure for assessment of psychological/psychosocial functioning based on clinical judgement.Conclusions: This study further confirmed that using child self-reported QoL measures is possible and may help psychosocial teams to individualise work. The GCQ is simple and convenient, and could be used as an annual screening tool to facilitate discussion of QoL with children and young people. Further work is necessary before such things as cut-off scores can be recommended. [ABSTRACT FROM AUTHOR]

Purpose: This study aims to characterize the symptom burden and life challenges that chordoma patients and their caregivers experience.Methods: In this cross-sectional study, we analyzed data from the Chordoma Foundation online community survey conducted in 2014. Frequency counts and percentages were calculated to determine the prevalence of self-reported symptoms and life challenges in the sample. We used Fisher's exact test to compare self-reported symptoms among subgroups with different disease status, tumor locations, and treatments received.Results: Among the survey participants, 358 identified themselves as chordoma patients and 208 as caregivers. The majority of the patients were over 45 years (72%), male (56%), educated beyond high school degree (87%), and from North America (77%). Skull base was the most prevalent tumor location (40%). Chronic pain (38%) was the most commonly reported symptom followed by depression or severe anxiety (35%), and chronic fatigue (34%). Among patients, the most commonly-reported challenges included delayed diagnosis (37%), long-term disability (33%), and change in career or reduced ability to work (33%). For caregivers, grief (55%), delayed diagnosis (47%), and difficulty helping the patient cope with his or her disease (45%) were most common.Conclusions: Our study findings suggest a high symptom burden and life challenges among chordoma patients and their caregivers. This study provides preliminary, limited estimates of the prevalence of a wide range of self-reported symptoms and challenges that will inform the assessment of patient-reported outcomes in future clinical trials and help clinicians better manage chordoma patients' symptoms. [ABSTRACT FROM AUTHOR]

Purpose: Little is known about specific concerns facing long-term melanoma survivors. The goal of this study was to compare quality of life (QOL) and mental health between long-term melanoma survivors and population controls.Methods: Participants from a previously conducted case-control study of risk factors for melanoma were recruited for a cross-sectional survey. Generic QOL and emotional health were measured using the SF-36 and Hospital Anxiety and Depression Scale questionnaires. A total of 724 melanoma survivors and 660 controls participated. Most melanoma survivors had stage I disease (85.6%); mean time from diagnosis was 9.6 ± 1.0 years. Comparisons of QOL measures between melanoma survivors and controls were conducted using regression models, adjusting for potential confounders.Results: Melanoma survivors, compared to controls, reported statistically significant but only slightly higher physical functioning and bodily pain QOL subscale scores than controls and otherwise similar QOL as measured by the remaining six SF-36 subscale scores. Prevalence of anxiety (18.1% vs. 19.3%, adjusted OR = 1.00 (0.74, 1.36); p = 1.00) and depression (7.2% vs. 9.8%, adjusted OR = 0.74 (0.48, 1.16); p = 1.00) were similar between melanoma survivors and controls.Conclusion: Long-term early stage melanoma survivors report similar general QOL and mental health compared to population controls. Further research is needed to identify concerns more specific to melanoma. [ABSTRACT FROM AUTHOR]

Background: Currently, 2.5 million orphaned children are living in Kenya and 56 million orphaned children are living across sub-Saharan Africa. No empirical research has investigated meaningfulness of life among this population, and few studies provide perspectives on the life-course consequences of losing a parent during childhood.Methods: In this study, we assess life meaningfulness in cross section of Kenyan women (n = 1974) in a semi-rural area of the country (Meru County) collected during June 2015. We used two sets of mediation analyses to assess (1) whether meaningfulness of life was lower among women who reported a parental death during their childhood, and how this association was mediated by social support, family functioning, school completion and HIV+ status of household, and (2) the extent to which lower subjective overall health among women who experienced orphanhood during childhood was mediated by less meaningfulness of life.Results: Women who experienced a parental death during childhood reported significantly less meaningful lives as adults. Lower social support and family functioning explained approximately 40% of the disparity. Women who experienced a parental death during childhood also had significantly worse subjective overall health, 18% of which was explained by lower meaningfulness of life.Conclusions: Further study on life meaningfulness and family capital in the context of the orphan crisis in sub-Saharan Africa is warranted, and required to promote equity across the lifespan. Policy efforts to support orphans and vulnerable children should target strengthening support networks and family functioning to optimize self-reported health outcomes. [ABSTRACT FROM AUTHOR]

Purpose: To compare long-term (4-10 years) quality of life (QoL) of men with low-risk prostate cancer (PCa) treated by different modalities and a reference group without PCa.Methods: In this cross-sectional study, four groups were sent a one-time QoL-questionnaire; PCa patients (1) following the structured Prostate cancer Research International Active Surveillance protocol, (2) who underwent radical prostatectomy (RP) in the context of the European Randomized study of Screening for Prostate Cancer-section Rotterdam, (3) who underwent radiotherapy (RT) at an academic hospital in The Netherlands, and (4) an age-matched reference group of men without PCa. The QoL-questionnaire addressed prostate-specific health (EPIC), generic health (SF-12), and anxiety (STAI-6). Statistical significance (p ≤ 0.05) and clinical relevance (≥0.5 SD) of differences between groups were assessed.Results: The AS, RP, RT, and reference group response rates amounted to 74% (122/165), 66% (70/106), 66% (221/335), and 75% (205/273), respectively. At a mean of 6.6 years of follow-up, active surveillance (AS)-men reported better urinary function [M = 93.0 (SD = 10.6) vs. 80.0 (SD = 19.1), p ≤ 0.001], less urinary incontinence [M = 90.0 (SD = 14.6) vs. 70.1 (SD = 28.8), p ≤ 0.001], and better sexual function [M = 40.9 (SD = 24.6) vs. 14.8 (17.7), p ≤ 0.001, clinically relevant] than RP-men. Compared to RT, AS-men reported better sexual function [M = 40.9 (SD = 24.6) vs. 25.8 (SD = 25.0), p = 0.069]. The four groups reported similarly low anxiety levels; the number of highly anxious men (STAI ≥ 44) ranged from 8 to 13%. For all QoL domains, men on AS and men without PCa reported very similar scores.Conclusions: Prostate-specific function of AS-men was significantly better than that of RP-men. When comparing AS to RT, a borderline significant difference in sexual function was seen. Men who followed an AS strategy for a long-term period were not anxious and accepted it well, suggesting that AS may be a good treatment option for men with low-risk PCa. [ABSTRACT FROM AUTHOR]

Background: Sleep quality has been widely studied among western countries. However, there is limited population-based evidence on insomnia in Chinese adult populations, especially in middle-aged and older adults. The aims of present study are to (1) examine the prevalence of poor sleep among Chinese middle-age and older adults, (2) compare the Pittsburgh Sleep Quality Index (PSQI) seven domain scores across different physical health statuses, (3) explore factors associated with insomnia.Methods: A cross-sectional survey was conducted using a multi-instrument questionnaire. In total, 1563 residents aged 45 or older in the community were interviewed. The Chinese version of the PSQI was used to assess sleep quality while poor sleep was defined as a total PSQI score >5. Socio-demographic, lifestyle and physical health data were also collected.Results: The prevalence of poor sleep among adults aged over 45 years was 20.67 %. Clusters logistic regression analysis identified that migrant workers, single marital status, lower education level, no physical exercise, illness within 2 weeks, and a higher total number of chronic diseases contribute to increased risk of poor sleep (P < 0.05). Among three clusters, physical health has the biggest independent contribution on sleep quality.Conclusions: Our results indicated that poor sleep was common in middle-aged and older adults. It was associated with identity of migrant worker, education level, exercise, illness within 2 weeks and number of chronic disease. Being ill within 2 weeks and having more chronic diseases were the major physical health-related factors contributing to poor sleep in the middle-aged and older people. Physical health may be a major determinant in sleep quality. [ABSTRACT FROM AUTHOR]

Purpose: To analyse the clinical, sociodemographic and socioeconomic factors that influence perceived quality of life (QoL) in a community sample of 33,241 people aged 65+ and to examine the relationship with models of social welfare in Europe.Methods: This was a cross-sectional study of data from Wave 5 (2013) of the Survey of Health, Ageing and Retirement in Europe (SHARE). The instruments used in the present study were as follows: sociodemographic data, CASP-12 (QoL), EURO-D (depression), indicators of life expectancy and suicide (WHO), and economic indicators (World Bank). Statistical analysis included bivariate and multilevel analyses.Results: In the multilevel analysis, greater satisfaction in life, less depression, sufficient income, better subjective health, physical activity, an absence of functional impairment, younger age and participation in activities were associated with better QoL in all countries. More education was only associated with higher QoL in Eastern European and Mediterranean countries, and only in the latter was caring for grandchildren also related to better QoL. Socioeconomic indicators were better and QoL scores higher (mean = 38.5 ± 5.8) in countries that had a social democratic (Nordic cluster) or corporatist model (Continental cluster) of social welfare, as compared to Eastern European and Mediterranean countries, which were characterized by poorer socioeconomic conditions, more limited social welfare provision and lower QoL scores (mean = 33.5 ± 6.4).Conclusions: Perceived quality-of-life scores are consistent with the sociodemographic and clinical characteristics of participants, as well as with the socioeconomic indicators and models of social welfare of the countries in which they live. [ABSTRACT FROM AUTHOR]

Purpose: The Patient Activation Measure (PAM-13) measures patients' knowledge, skill, and confidence in chronic condition self-management. The purpose of this study was to assess the validity of PAM-13 (English version) among English-speaking adults with cardiac conditions in Singapore.Methods: A cross-sectional study was conducted in a convenient sample of 270 heart clinic patients. Using the unitary concept of validity, evidence of (1) internal structure via data quality, unidimensionality, differential item functioning, and internal consistency, (2) response process through item difficulty and item fit using Rasch modeling, and (3) relationship to other variables via correlations with depression and self-efficacy were examined.Results: The item response was high with only one missing answer. All items had a small floor effect, but nine out of 13 items had a ceiling effect larger than 15 %. Cronbach's α was 0.86, and average inter-item correlations was 0.324. Results suggested unidimensionality; however, differences in item difficulty ranking were found. A low, negative correlation was found with depression, while a moderate, positive correlation was found with self-efficacy.Conclusion: Evidence in all three areas of validity were mixed. Caution should be exercised when using categorical activation "level" to inform clinical decisions. [ABSTRACT FROM AUTHOR]

Purpose: Theories explaining the impact of intimate partner violence (IPV) on mental health have focused on heterosexual relationships. It is unclear whether mental health disparities between heterosexual and sexual minority people are due to IPV or factors related to sexual orientation. The present study aimed to investigate pathways of how sexual orientation influenced quality of life and mental health.Methods: The present cross-sectional study was conducted in 1076 young adults in a university population (934 heterosexual and 142 sexual minority groups). Structural equation modelling was used to examine the pathways of sexual orientation, dating violence, sexual orientation concealment, quality of life and mental health (perceived stress, anxiety and depression).Results: After adjusting for sociodemographic factors, quality of life in sexual minority people was poorer [estimate -2.82, 95 % confidence interval (CI) -4.77 to -0.86, p = 0.005], and stress (estimate 2.77, 95 % CI 1.64-3.92, p < 0.0001), anxiety (estimate 1.84, 95 % CI 1.13-2.56, p < 0.0001) and depression levels (estimate 0.62, 95 % CI 0.05-1.2, p < 0.0001) were higher than in heterosexual people. Dating violence and sexual orientation concealment were mediators, with the models showing a good fit.Conclusion: Our study has progressed investigation of the link between sexual orientation and quality of life and mental health in the Chinese context. It has helped identify health disparities between heterosexual and sexual minority people and determined specific factors affecting their quality of life and mental health. [ABSTRACT FROM AUTHOR]

Purpose: Oral health-related quality of life (OHRQoL) in children and adolescents can be assessed with two different approaches: children can directly report their own perceptions or parents can serve as proxies and rate their child's OHRQoL from their perspectives. It was the aim to investigate whether parents can accurately rate their children's OHRQoL and to compare agreement between OHRQoL domains and between age groups.Methods: In this cross-sectional study, a sample of 140 children aged 7-17 years was consecutively recruited at a university-based orthodontic clinic and a public school. OHRQoL was assessed with the 19-item Child Oral Health Impact Profile (COHIP) with one version for the child and one for the parent. Correlation between child and parent ratings and diagnostic accuracy of the parental rating to assess children's OHRQoL was calculated, and findings were compared between 7-11- and 12-17-year-old children.Results: COHIP summary score differed only slightly between parents (mean 60.7 ± 9.8 points) and children (mean 61.9 ± 8.9 points). Correlation of summary scores was r = 0.38, corresponding to a moderate agreement. Median of item prevalence of all 19 items was 29.5 % for children and 41.7 % for parents. Median of positive predictive values was 50.9 % and median of negative predictive values 76.7 %, with no substantial differences in age groups.Conclusions: Parents' perception of their children's OHRQoL is not accurate enough to detect oral health problems in an individual child aged between 7 and 17 years, and therefore, proxy OHRQoL assessment for individuals in this age group cannot be recommended. [ABSTRACT FROM AUTHOR]

Purpose: Chronic itch (CI) is a common symptom in haemodialysis (HD) patients affecting about every 4th HD patient. Though it is known that health-related quality of life (HRQOL) is impaired in HD patients, data are lacking on how CI influences HRQOL in this group of patients, also regarding sex differences and the role of sleep and pain.Methods: In order to investigate the itch prevalence and to investigate associated factors, GEHIS (German Epidemiology Haemodialysis Itch Study) was established as first cross-sectional study being representative for all dialysis units in Germany by considering their regional distribution and size of the located city according to population. HRQOL of 860 HD patients from a randomly selected cluster sample of 25 dialysis units was investigated using patient-reported outcomes as the Short-Form Health Survey (SF-12), the Hospital Anxiety and Depression Scale (HADS) as well as sleep and pain. Additionally, itch-specific QOL was assessed in HD patients affected by CI using the validated ItchyQoL.Results: 42.8 % of HD patients were female. The mean age was 67.2 years (SD ± 13.5). Female patients showed significantly worse values in the mental component summary of the SF-12 as well as in the HADS subscale anxiety compared to male patients. Itch-specific HRQOL did not subject to sex. Patients with impairments in quality of sleep showed significantly worse values in both the SF-12 and the HADS subscales, however not in the ItchyQoL. The occurrence of pain was significantly associated with impaired SF-12, HADS and the ItchyQoL. Multivariate linear regression showed the itch-specific HRQOL to be significantly impaired with rising severity of CI.Conclusions: Impairments in HRQOL are a serious problem in HD patients. CI means an additional burden in affected patients, also impairing their HRQOL. GEHIS showed significant sex differences in HRQOL outcomes also in HD patients. CI and pain as well as sleep frequently occur combined and significantly impair HRQOL in HD patients. The care of HD patients should be complemented by psychosocial support and mental health services. [ABSTRACT FROM AUTHOR]

Objective: In many jurisdictions, deterioration in quality of life assessed with Dermatology Life Quality Index (DLQI) is used for medical and reimbursement decisions in various dermatological conditions such as psoriasis. However, utility values for health states defined by the DLQI have not yet been evaluated. Therefore, we aim to estimate utilities for different health states described by the ten items of the DLQI.Methods: A cross-sectional survey was performed in a convenience sample of the general population. Seven DLQI health states with total scores of 6, 11 and 16 (3-3 and 1 states, respectively) were developed. All of them were different from each other in the number of affected items and severity levels of impairment. The 10-year time trade-off method was used to value health states.Results: Mean utilities elicited by the respondents (n = 308) for the three 6-, three 11- and one 16-point DLQI health states were 0.62-0.75, 0.59-0.66, and 0.56, respectively. In half of the six pairwise comparisons, where health states with the same total DLQI score were compared, significant difference between utilities was found. In eight out of the 15 comparisons between health states with different DLQI scores, utilities were not significantly different.Conclusions: Utility values for health states with identical DLQI total score may significantly vary. This result might be generalisable to various patient populations, in which the DLQI is used; nevertheless, further research is needed. The discrepancies between DLQI scores and utilities might have an impact on medical and reimbursement decisions as they make the utility gain from treatment uncertain. [ABSTRACT FROM AUTHOR]

Purpose: This study sought to compare the association between health-related quality of life (HRQoL) and four body health types by gender.Methods: The study included 6217 men and 8243 women over 30 years of age chosen from a population-based survey. Participants were grouped by body mass index and metabolic abnormality into four types: metabolically healthy normal weight, metabolically abnormal but normal weight (MANW), metabolically healthy obesity (MHO), and metabolically abnormal obesity (MAO). HRQoL was measured using the EQ-5D health questionnaire. The outcomes encompassed five dimensions (mobility, self-care, usual activity, pain/discomfort, and anxiety/depression), and the impaired HRQoL dichotomized by the EQ-5D preference score. Complex sample multivariate binary logistic regression analyses were conducted to adjust for sociodemographic variables, lifestyle factors, and disease comorbidity.Results: Among men, those in the MANW group presented worse conditions on all dimensions and the impaired HRQoL compared to other men. However, no significant effect remained after adjusting for relevant covariates. For women, those in the MAO group had the most adversely affected HRQoL followed by those females in the MHO group. The domain of mobility and impaired HRQoL variable of the MAO and MHO groups remained significant when controlling for all covariates in the model.Conclusions: The MANW is the least favorable condition of HRQoL for men, suggesting that metabolic health may associate with HRQoL more than obesity for males. In women, the MAO and MHO groups had the most adversely affected HRQoL, implying that MHO is not a favorable health condition and that obesity, in general, may be strongly associated with HRQoL in women. [ABSTRACT FROM AUTHOR]

Aims: We evaluated pedometry as a novel patient-centered outcome because it enables passive continuous assessment of activity and may provide information about the consequences of symptomatic toxicity complementary to self-report.Methods: Adult patients undergoing hematopoietic cell transplant (HCT) wore pedometers and completed PRO assessments during transplant hospitalization (4 weeks) and 4 weeks post-discharge. Patient reports of symptomatic treatment toxicities (single items from PRO-CTCAE, http://healthcaredelivery.cancer.gov/pro-ctcae ) and symptoms, physical health, mental health, and quality of life (PROMIS(®) Global-10, http://nih.promis.org ), assessed weekly with 7-day recall on Likert scales, were compared individually with pedometry data, summarized as average daily steps per week, using linear mixed models.Results: Thirty-two patients [mean age 55 (SD = 14), 63 % male, 84 % white, 56 % autologous, 43 % allogeneic] completed a mean 4.6 (SD = 1.5, range 1-8) evaluable assessments. Regression model coefficients (β) indicated within-person decrements in average daily steps were associated with increases in pain (β = -852; 852 fewer steps per unit increase in pain score, p < 0.001), fatigue (β = -886, p < 0.001), vomiting (β = -518, p < 0.01), shaking/chills (β = -587, p < 0.01), diarrhea (β = -719, p < 0.001), shortness of breath (β = -1018, p < 0.05), reduction in carrying out social activities (β = 705, p < 0.01) or physical activities (β = 618, p < 0.01), and global physical health (β = 101, p < 0.001), but not global mental health or quality of life.Conclusions: In this small sample of HCT recipients, more severe symptoms, impaired physical health, and restrictions in the performance of usual daily activities were associated with statistically significant decrements in objectively measured daily steps. Pedometry may be a valuable outcome measure and validation anchor in clinical research. [ABSTRACT FROM AUTHOR]

Purpose: Lipoedema is a chronic, progressive adipose disorder of unknown etiology, often underdiagnosed or misdiagnosed as obesity. It manifests itself with accumulation of the fat in lower parts of the body and associated edema and, due to numerous physical and psychological consequences, affects the quality of life (QOL) of those who suffer. The aim of this study was to investigate the psychological factors that might have an impact on the QOL of women with lipoedema from the contextual behavioral viewpoint.Methods: In an Internet-based cross-sectional study, women suffering from lipoedema (N = 120) were asked to fill in questionnaires assessing: symptom severity, QOL (WHOQOL-BREF), satisfaction with life (SWLS), psychological flexibility (Acceptance and Action Questionnaire-II), social connectedness (Social Connectedness Scale-Revised) and other psychological factors. The majority of participants were from the USA, the UK, and Australia.Results: Multiple hierarchical regression analyses showed that a higher level of QOL was predicted by higher levels of psychological flexibility and social connectedness, while controlling for symptom severity. Higher level of SWL was predicted only by higher level of social connectedness.Conclusions: Acceptance and Commitment Therapy with psychological flexibility as the target of change and Functional Analytic Psychotherapy with social connectedness as the target of change might be useful in treating women with lipoedema; however, further research in this area is needed. The authors conclude that psychological and biomedical interventions for women with lipoedema and their QOL merit more attention from researchers and the medical community than is currently received. [ABSTRACT FROM AUTHOR]

Aim: Many long-term ostomates are 'out-of-sight' of healthcare, and it is unknown how ostomates deal with ostomy-related problems and how these problems affect their quality of life (QOL). The aim is to examine patient-related studies describing ostomy-related problems and their impact on the perceived QOL of long-term colostomates.Methods: The electronic databases PubMed (MEDLINE), CINAHL, Cochrane Library and PsycINFO were systematically searched. All studies were included in which ostomy-specific QOL was measured using validated multidimensional instruments.Results: Of the 6447 citations identified, 14 prevailingly descriptive cross-sectional studies were included. Three different validated multidimensional instruments for measuring QOL in ostomates were used (EORTC C30/CR38, MCOHQOLQO, Stoma QOL Questionnaire). All studies demonstrated that living with a colostomy influences the overall QOL negatively. The ostomy-related problems described included sexual problems, depressive feelings, gas, constipation, dissatisfaction with appearance, change in clothing, travel difficulties, feeling tired and worry about noises.Conclusion: In conclusion, all 14 studies gave an indication of the impact of ostomy-related problems on the perceived QOL and demonstrated that a colostomy influences the QOL negatively. There is a wide range of ostomy-specific QOL scores, and there seem to be higher QOL scores in the studies where the MCOHQOLQO instrument was used. The MCOHQOLQO and the Stoma QOL Questionnaire gave the most detailed information about which ostomy-related problems were experienced. This review adds knowledge about the impact of stoma-related problems on QOL of long-term ostomates, but more research has to be conducted, to detect ostomy-related problems and especially possible care needs. [ABSTRACT FROM AUTHOR]

Purpose: The purpose of this study was to examine the incidence of psychological complaints and the relationship of these complaints with the quality of life (QOL) and accident- and patient-related factors among severely injured patients after the rehabilitation phase. Methods: Patients of 18 years or older with an injury severity score above 15 were included 15-53 months after their accident. Accident and patient characteristics were obtained from questionnaires and the trauma registry. Several questionnaires (Hospital Anxiety and Depression Scale, Impact of Events Scale, and Cognitive Failure Questionnaire) were used to determine the symptoms of psychological problems (anxiety or depression, post-traumatic stress disorder, or subjective cognitive complaints, respectively). The World Health Organization Quality of Life-Bref was used to determine QOL. A reference group of the Dutch general population was used for comparison of QOL scores. Results: The participation rate was 62 % ( n = 173). At the time of the study, 30.1 % ( n = 52) of the investigated patients had psychological complaints. No relation between psychological complaints and somatic severity or type of injury was found. Patients who were employed before the accident or resumed working reported less psychological complaints. Use of any medication before the accident and treatment for pre-accidental psychological problems were positively related to psychological complaints afterwards. QOL of severely injured patients was impaired in comparison with the general Dutch population, but only for those with psychological complaints. Conclusions: Psychological complaints seem to be an important and underestimated factor for a decreased QOL among severely injured patients. [ABSTRACT FROM AUTHOR]

This study aimed to find out whether General Practitioners (GPs) use quality of life (QOL) information in primary care, to explore their reasoning and to assess any barriers to use. A second purpose was to see whether the Trans-Theoretical Model (TTM) of behaviour change could be applied to doctor's use of QOL information in primary care. A representative, cross-sectional sample of 800 GPs was approached in a national postal survey; 280 (38%) provided qualitative and quantitative information. Most GPs said that QOL was interesting and important. Users had seen more information and scales, and were more aware of its uses; only 8% had ever used formal standardised questionnaires. The main barriers to implementation were a shortage of time and information, and experience with using QOL assessment. A sizable minority wanted to know more. Seventy-one percent would use QOL to monitor treatment effectiveness. The five stages of the TTM were used to identify whether GP's were predisposed to use QOL information from their knowledge levels and values. While there was some support for the model, the TTM did not sensitively and reliably discriminate between users and non-users on all variables, and so has limited value here. [ABSTRACT FROM AUTHOR]