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International development of four EORTC disease-specific quality of life questionnaires for patients with Hodgkin lymphoma, high- and low-grade non-Hodgkin lymphoma and chronic lymphocytic leukaemia
ConclusionsThis study provides four new EORTC modules for use in clinical research and routine practice in conjunction with the EORTC QLQ-C30 for assessing QoL in patients with lymphoma and CLL. (Source: Quality of Life Research)
Source: Quality of Life Research - November 10, 2017 Category: Health Management Source Type: research

Development of a practical outcome measure to account for individual differences in quality-of-life appraisal: the Brief Appraisal Inventory
ConclusionsThe BAI provides a practical, short tool for evaluating appraisal in a wide range of assessment situations. Future research might utilize the BAI in longitudinal research aimed at detecting response-shift effects over time, and in clinical settings to improve patient-provider communication about concerns related to health, health care, or QOL. (Source: Quality of Life Research)
Source: Quality of Life Research - November 10, 2017 Category: Health Management Source Type: research

Association between social support and health-related quality of life among Chinese rural elders in nursing homes: the mediating role of resilience
This study aims to confirm the relationship between social support and health-related quality of life (HRQOL) among rural Chinese elders in nursing homes, and to examine the mediating role of resilience in the impact of social support on HRQOL.MethodsA cross-sectional survey of 205 elders aged 60 and above was conducted in five rural public nursing homes. Sociodemographic characteristics, the SF-36 questionnaire, and information about social support and resilience were collected. The researchers administered the questionnaires to the participants in a face-to-face setting. Descriptive analysis and a correlation matrix were...
Source: Quality of Life Research - November 9, 2017 Category: Health Management Source Type: research

Effects of a 9-month resistance training intervention on quality of life, sense of coherence, and depressive symptoms in older adults: randomized controlled trial
ConclusionResistance training is beneficial for environmental quality of life and sense of coherence. Attending resistance training twice a week seems to be the most advantageous for these aspects of psychological functioning. (Source: Quality of Life Research)
Source: Quality of Life Research - November 9, 2017 Category: Health Management Source Type: research

Neighborhood structural differences and women ’s mental health: an empirical study in Accra, Ghana
ConclusionsThese findings suggest that policies and programs that improve the physical and economic conditions of deprived neighborhoods, as well as civic initiatives that improve social capital and cohesion, may be important for promoting collective actions and improving health outcomes in urban settings like Accra. (Source: Quality of Life Research)
Source: Quality of Life Research - November 8, 2017 Category: Health Management Source Type: research

New resilience instrument for patients with cancer
ConclusionThe RS-SC is a brief and specific self-report resilience instrument for Chinese patients with cancer and shows sound psychometric properties in this study. The RS-SC has potential applications in both clinical practice and research with strength-based resiliency interventions. (Source: Quality of Life Research)
Source: Quality of Life Research - November 8, 2017 Category: Health Management Source Type: research

Mental health, loneliness, and illness perception outcomes in quality of life among young breast cancer patients after mastectomy: the role of breast reconstruction
ConclusionsBreast reconstruction is not a panacea for patients in improving HRQoL. (Source: Quality of Life Research)
Source: Quality of Life Research - November 8, 2017 Category: Health Management Source Type: research

Measurement versus prediction in the construction of patient-reported outcome questionnaires: can we have our cake and eat it?
DiscussionThe answers are as follows: (1) Because measurement-based methods tend to maximize inter-item correlations by which predictive validity reduces. (2) Through selecting items that correlate highly with the criterion and lowly with the remaining items. (3) Yes, these methods may lead to different item selections. (4) For a single questionnaire: Yes, but it is problematic because reliability cannot be estimated accurately. For a test battery: Yes, but it is very costly. Implications for the construction of patient-reported outcome questionnaires are discussed. (Source: Quality of Life Research)
Source: Quality of Life Research - November 2, 2017 Category: Health Management Source Type: research

Presenting comparative study PRO results to clinicians and researchers: beyond the eye of the beholder
AbstractPurposePatient-reported outcome (PRO) results from clinical trials can inform clinical care, but PRO interpretation is challenging. We evaluated the interpretation accuracy and perceived clarity of various strategies for displaying clinical trial PRO findings.MethodsWe conducted an e-survey of oncology clinicians and PRO researchers (supplemented by one-on-one clinician interviews) that randomized respondents to view one of the three line-graph formats (average scores over time for two treatments on four domains): (1) higher scores consistently indicating “better” patient status; (2) higher scores indic...
Source: Quality of Life Research - November 2, 2017 Category: Health Management Source Type: research

A preliminary report on psychiatric impairments and quality of life among Kaohsiung gas explosion victims 6 months after the event
ConclusionThis study shows that probable PTSD/MDE is associated with lower QOL, supporting the need for early mental health rehabilitation after a disaster. Therefore, rapid screening and early mental rehabilitation are very important. (Source: Quality of Life Research)
Source: Quality of Life Research - November 1, 2017 Category: Health Management Source Type: research

Measuring everyday functional competence using the Rasch assessment of everyday activity limitations (REAL) item bank
ConclusionThe Rasch assessment of everyday activity limitations (REAL) item bank will hopefully prove a useful instrument for assessing everyday activity limitations. T-scores obtained using derived measures can be used to benchmark physical function outcomes against the general Dutch adult population. (Source: Quality of Life Research)
Source: Quality of Life Research - October 24, 2017 Category: Health Management Source Type: research

Long-term QALY-weights among spouses of dependent and independent midlife stroke survivors
AbstractPurpose The aim of this study was to investigate whether the dependency of midlife stroke survivors had any long-term impact on their spouses ’ QALY-weights.MethodData on stroke survivors, controls, and spouses were collected from the 7-year follow-up of the Sahlgrenska Academy Study on Ischemic Stroke. Health-related quality of life was assessed by the SF-36, and the preference-based health state values were assessed with the SF-6D. Spouses of dependent and independent stroke survivors were categorized according to their scores on the modified Rankin Scale. An ordinary least squares regression analysis was u...
Source: Quality of Life Research - October 24, 2017 Category: Health Management Source Type: research

Viability of the World Health Organization quality of life measure to assess changes in quality of life following treatment for alcohol use disorder
ConclusionsThese findings suggest that the WHOQOL-BREF is an appropriate measure to use in samples with AUD, that the WHOQOL-BREF scores may be examined over time (e.g., from pre- to post-treatment), and the WHOQOL-BREF may be used to assess improvements in quality of life in AUD research. (Source: Quality of Life Research)
Source: Quality of Life Research - October 24, 2017 Category: Health Management Source Type: research

Children ’s family experiences: development of the PROMIS ® pediatric family relationships measures
ConclusionThe PROMIS pediatric Family Relationships measures can be applied in research focused on determinants, outcomes, and the protective effects of children ’s subjective family relationship experiences. (Source: Quality of Life Research)
Source: Quality of Life Research - October 24, 2017 Category: Health Management Source Type: research

Understanding the post-surgical bariatric experiences of patients two or more years after surgery
ConclusionsGenerally, participants described positive improvements in their physical, psychological, and social state since surgery. However, concerns pertaining to several unanticipated outcomes of the surgery were underscored and informed the recommendations for other patients to be prepared to relearn about ones ’ body, utilize the support services available, and be aware that social relationships may change and/or require tending. Participants’ insights can be used to help others meet with long-term success post-bariatric surgery. (Source: Quality of Life Research)
Source: Quality of Life Research - October 24, 2017 Category: Health Management Source Type: research

Item usage in a multidimensional computerized adaptive test (MCAT) measuring health-related quality of life
ConclusionsOur results strengthen the claim that relatively short item banks may suffice when using polytomous items (and no content constraints/exposure control mechanisms), especially when using MCAT. (Source: Quality of Life Research)
Source: Quality of Life Research - October 24, 2017 Category: Health Management Source Type: research

Resilience to health challenges is related to different ways of thinking: mediators of physical and emotional quality of life in a heterogeneous rare-disease cohort
ConclusionsResilient people employ different appraisal processes than non-resilient people, and these processes differ for physical and emotional outcomes. Resilience was a stronger mediator of the relationship between physical rather than emotional functioning and appraisal. (Source: Quality of Life Research)
Source: Quality of Life Research - October 24, 2017 Category: Health Management Source Type: research

Biopsychosocial factors predict quality of life in thoracolumbar spine surgery
ConclusionThese results show that preoperative psychosocial variables are significantly associated with poorer postoperative health-related QoL outcomes following spinal surgeries, supporting a biopsychosocial pre-op care map. (Source: Quality of Life Research)
Source: Quality of Life Research - October 24, 2017 Category: Health Management Source Type: research

Psychometric evaluation of an item bank for computerized adaptive testing of the EORTC QLQ-C30 cognitive functioning dimension in cancer patients
ConclusionA CF item bank for CAT measurement consisting of 34 items was established, applicable to various cancer patients across countries. This CAT measurement system will facilitate precise and efficient assessment of HRQOL of cancer patients, without loss of comparability of results. (Source: Quality of Life Research)
Source: Quality of Life Research - October 24, 2017 Category: Health Management Source Type: research

Health-related quality of life as measured by the EQ-5D in the prevention, screening and management of cervical disease: A systematic review
ConclusionsOur results reveal the challenges of sourcing reliable estimates of HRQoL for use in CEAs of cervical cancer prevention and treatment. The EQ-5D appears insufficiently sensitive for some health states. A more general problem is the paucity of HRQoL estimates for many health states and their change over time. (Source: Quality of Life Research)
Source: Quality of Life Research - October 24, 2017 Category: Health Management Source Type: research

Socio-demographic, clinical characteristics and utilization of mental health care services associated with SF-6D utility scores in patients with mental disorders: contributions of the quantile regression
ConclusionsThe quantile regression may constitute a relevant complement for the analysis of factors associated with utility scores. For policy decision-making, the association of full-time hospitalization with lower utility scores while part-time care was associated with higher scores supports the further development of alternatives to full-time hospitalizations. (Source: Quality of Life Research)
Source: Quality of Life Research - October 24, 2017 Category: Health Management Source Type: research

Health-related quality of life in paediatric patients with congenital heart defects: association with the type of heart defect and the surgical technique
AbstractSummaryThe aim of the study was to investigate the impact of a number of surgical interventions for a various congenital cardiac defects (CHDs) on self-reported HRQoL.MethodsPatients who had received corrective surgery of several congenital heart defects (surgical VSD closure, Fallot, TGA after atrial or arterial switch or Fontan-type circulation for univentricular AV-connection) were interviewed in the office of their home peadiatric cardiologist. HRQoL in children along 7 dimensions was assessed using a standardised questionnaire (PEDQoL); information on the medical case history of each respondent was also collec...
Source: Quality of Life Research - October 24, 2017 Category: Health Management Source Type: research

Bias in retrospective assessment of perceived dental treatment effects when using the Oral Health Impact Profile
ConclusionFindings suggest that retrospective assessments of OHRQoL using the OHIP-49 are susceptible to bias. Cognitive dissonance is more likely to appear as a source of bias than implicit theory of change. (Source: Quality of Life Research)
Source: Quality of Life Research - October 23, 2017 Category: Health Management Source Type: research

Validation of a Chinese version of the stress overload scale-short and its use as a screening tool for mental health status
ConclusionThe SOS-SC exhibits acceptable psychometric properties in the Chinese context. That said, the two aspects of stress can be differentiated by the Chinese context, therefore, the SOS-SC can be used to measure stress and screen mental health status among the Chinese population, and monitor and evaluate health-promoting interventions. (Source: Quality of Life Research)
Source: Quality of Life Research - October 19, 2017 Category: Health Management Source Type: research

Developing a patient-reported outcome measure for HIV care on perceived barriers to antiretroviral adherence: assessing the needs of HIV clinicians through qualitative analysis
ConclusionOverall, this study ’s findings suggest that to support the clinical management of ART adherence, our PRO must meet the needs of a wide variety of patients and must perform multiple functions. (Source: Quality of Life Research)
Source: Quality of Life Research - October 13, 2017 Category: Health Management Source Type: research

The association between somatic and psychological discomfort and health-related quality of life according to the elderly and non-elderly
ConclusionOur study suggests that somatic and psychological discomfort symptoms are associated with HRQOL. The main factors related to HRQOL vary according to age and large prospective studies and clinical trials are needed to clarify the association between specific symptoms and HRQOL according to the age. (Source: Quality of Life Research)
Source: Quality of Life Research - October 12, 2017 Category: Health Management Source Type: research

Effects of perceived autonomy support and basic need satisfaction on quality of life in hemodialysis patients
ConclusionAutonomy support from physicians and nurses contributes to improving HD patients ’ HRQOL through basic need satisfaction. This indicates that staff caring for patients with severe chronic diseases should offer considerable support for patient autonomy. (Source: Quality of Life Research)
Source: Quality of Life Research - October 12, 2017 Category: Health Management Source Type: research

Associated and mediating variables related to quality of life among service users with mental disorders
ConclusionsDecision makers and mental health professionals should promote service continuity, and closer collaboration between primary care and specialized services, while supporting recovery-oriented services that encourage service user involvement in their treatment and follow-up. Community-based organizations should aim to reduce the seriousness of needs particularly for female service users and those living alone. (Source: Quality of Life Research)
Source: Quality of Life Research - October 11, 2017 Category: Health Management Source Type: research

Establishing clinical severity for PROMIS ® measures in adult patients with rheumatic diseases
ConclusionsWe used a modified educational method to estimate clinically relevant cut-points to classify severity for PROMIS measures This allows for meaningful interpretation of PROMIS® measures in a clinical setting of RD population. (Source: Quality of Life Research)
Source: Quality of Life Research - October 5, 2017 Category: Health Management Source Type: research

Lifetime traumatic events, health-related quality of life, and satisfaction with life in older adults
AbstractPurposesThe aims were to assess the association between lifetime traumatic events and post-traumatic stress syndrome (PTSS) and health-related quality of life (HRQOL) and satisfaction with life stratified by gender among a community-dwelling sample of older adults.MethodsData used came from the ESA-Services study (2011 –2013) and included a large convenience sample of 1811 older adults. Traumatic events were measured using a list of 14 events. PTSS was measured using the Impact of Event Scale-Revised. HRQOL and life satisfaction were measured with the EQ-5D-3L and the Satisfaction With Life Scale. Multivariat...
Source: Quality of Life Research - September 13, 2017 Category: Health Management Source Type: research

The impact of older person ’s frailty on the care-related quality of life of their informal caregiver over time: results from the TOPICS-MDS project
ConclusionsHealth professionals observing decreasing psychological well-being of an older person and increasing hours of informal care provision should be aware of the considerable problems this may bring to their informal caregiver, and should tailor interventions to support informal caregivers according to their specific needs and problems. (Source: Quality of Life Research)
Source: Quality of Life Research - September 13, 2017 Category: Health Management Source Type: research

Relationships between environmental factors and participation in adults with traumatic brain injury, stroke, and spinal cord injury: a cross-sectional multi-center study
AbstractPurposeTo develop and evaluate a model of environmental factors-participation relationships for persons with traumatic brain injury (TBI), stroke, and spinal cord injury (SCI), and test whether this model differed across three diagnostic groups, as well as other demographic and clinical characteristics.MethodsA cross-sectional observational study included 545 community-dwelling adults with neurological disorders (TBI  = 166; stroke = 189; SCI = 190) recruited at three academic medical centers. Participants completed patient-reported measures of environmental factors and participation.R...
Source: Quality of Life Research - September 13, 2017 Category: Health Management Source Type: research

Development of the life impact burn recovery evaluation (LIBRE) profile: assessing burn survivors ’ social participation
ConclusionsThe LIBRE Profile is a promising new measure of social participation following a burn injury that enables burn survivors and their care providers to measure social participation. (Source: Quality of Life Research)
Source: Quality of Life Research - September 13, 2017 Category: Health Management Source Type: research

Associations between illness duration and health-related quality of life in specified mental and physical chronic health conditions: results from a population-based survey
AbstractPurposeWe compared health-related quality of life (HRQOL) in incident ( ≤1 year since diagnosis), mid-term (>1 –5 years since diagnosis), and long-term (>5  years since diagnosis) cases of mental and physical chronic illness with the general population and assessed the modifying effects of age and gender on the association between HRQOL and illness duration.MethodsData from the 2007 Australian National Health and Mental Wellbeing Survey were used. HRQOL was captured by the Assessment of Quality of Life Scale 4D. Multivariable linear regression analyses compared HRQOL of individuals wit...
Source: Quality of Life Research - September 13, 2017 Category: Health Management Source Type: research

Relationship between subjective and actigraphy-measured sleep in 237 patients with metastatic colorectal cancer
ConclusionsSubjective report of sleep problems was not associated with worse objectively measured sleep parameters in patients with MCC although it was associated with disrupted circadian rest-activity rhythm and poorer QOL. These findings coincide with prior research in cancer patients in that an inconsistent relationship exists between subjective and objective sleep measurements on some sleep domains. This study supports the value of coupled evaluation of self-reported and objective measures of sleep and circadian function in cancer patients. (Source: Quality of Life Research)
Source: Quality of Life Research - September 13, 2017 Category: Health Management Source Type: research

Does exercise training augment improvements in quality of life induced by energy restriction for obese populations? A systematic review
ConclusionsA definitive conclusion regarding the capacity of exercise to facilitate greater improvement in HRQOL than diet alone, or, to formulate an exercise prescription for obese adults to address HRQOL is not feasible based on the existing evidence. Future studies should utilise comparable HRQOL assessment tools along with ensuring full reporting of results. (Source: Quality of Life Research)
Source: Quality of Life Research - September 13, 2017 Category: Health Management Source Type: research

Tooth loss and general quality of life in dentate adults from Southern Brazil
ConclusionsOral health as measured by tooth loss was associated with negative impacts on general quality of life assessed by the WHOQOL-BREF. There was a lack of evidence that SDA is a condition that negatively affects general quality of life. (Source: Quality of Life Research)
Source: Quality of Life Research - September 13, 2017 Category: Health Management Source Type: research

Comparison of quality of life among community-dwelling older adults with the frailty phenotype
AbstractPurposeTo compare the perception of the quality of life (QOL) of community-dwelling older adults with the phenotype of frailty.MethodsCross-sectional analysis of baseline data of the “Cohort of Obesity, Sarcopenia and Frailty of Mexican Older Adults” (COSFOMA). Operationalization of frailty was carried out using the phenotype as follows: weight loss, self-report of exhaustion, low physical activity, slow gait, and weakness. QOL was measured using two scales: World Health Org anization Quality of Life of Older Adults (WHOQOL-OLD), which is a specific instrument for the elderly population, and Short Form-...
Source: Quality of Life Research - September 13, 2017 Category: Health Management Source Type: research

Enrollment in early head start and oral health-related quality of life
ConclusionsThis study is the first to demonstrate that families of young children enrolled in EHS report improved OHRQoL compared to their non-enrolled peers. These results highlight the potential effectiveness of improving the quality of life of low-resource families through early childhood education. (Source: Quality of Life Research)
Source: Quality of Life Research - September 13, 2017 Category: Health Management Source Type: research

Everyday life following hematopoietic stem cell transplantation: decline in physical symptoms within the first month and change-related predictors
AbstractPurposeLower quality of life, especially in the physical domain (Physical-QOL), is common in patients after hematopoietic stem cell transplantation (HSCT). However, few studies explore changes in the Physical-QOL, i.e., physical symptoms, in everyday life of patients following HSCT. The present study addresses this gap by examining patient daily physical symptoms and their predictors in terms of demographic and clinical characteristics.MethodsPhysical symptoms were reported by 188 patients (56.9% men; aged 47.6  ± 13.4 years) for 28 consecutive days after post-HSCT hospital discharge. Mult...
Source: Quality of Life Research - September 12, 2017 Category: Health Management Source Type: research

Health-related quality of life, developmental milestones, and self-esteem in young adults with bleeding disorders
ConclusionThis study demonstrates some impairments in HRQOL and self-esteem in YA men with bleeding disorders. By monitoring HRQOL, problems can be identified early, especially with regard to their physical and professional/school functioning. (Source: Quality of Life Research)
Source: Quality of Life Research - September 12, 2017 Category: Health Management Source Type: research

Author index
(Source: Quality of Life Research)
Source: Quality of Life Research - September 12, 2017 Category: Health Management Source Type: research

24th Annual Conference of the International Society for Quality of Life Research
(Source: Quality of Life Research)
Source: Quality of Life Research - September 12, 2017 Category: Health Management Source Type: research

Perceived medication adherence barriers mediating effects between gastrointestinal symptoms and health-related quality of life in pediatric inflammatory bowel disease
AbstractObjectivesThe primary objective was to investigate the mediating effects of patient-perceived medication adherence barriers in the relationship between gastrointestinal symptoms and generic health-related quality of life (HRQOL) in adolescents with inflammatory bowel disease (IBD). The secondary objective explored patient health communication and gastrointestinal worry as additional mediators with medication adherence barriers in a serial multiple mediator model.MethodsThe Pediatric Quality of Life Inventory ™ Gastrointestinal Symptoms, Medicines, Communication, Gastrointestinal Worry, and Generic Core Scales...
Source: Quality of Life Research - September 8, 2017 Category: Health Management Source Type: research

Cross-cultural adaptation and measurement properties of generic and cancer-related patient-reported outcome measures (PROMs) for use with cancer patients in Brazil: a systematic review
ConclusionsThis review aids the selection process of Brazilian Portuguese PROMs for use in cancer patients. After acknowledging the methodological caveats and strengths of each tool, our opinion is that for quality of life and symptoms assessment the adapted FACT-G version and the ESAS could be recommended, respectively. Future research should rely on the already accepted standards of CCA and validation studies. (Source: Quality of Life Research)
Source: Quality of Life Research - September 8, 2017 Category: Health Management Source Type: research

How is weight stigma related to children ’s health-related quality of life? A model comparison approach
ConclusionsThe mediation model provided the best fitting and more parsimonious representation of the relations between body weight, stigma experiences, and HRQoL, meaning that an increased likelihood of experiencing weight-based teasing episodes, rather than excess weight per se, is associated with reduced quality of life in middle childhood. (Source: Quality of Life Research)
Source: Quality of Life Research - September 7, 2017 Category: Health Management Source Type: research

Assessing responsiveness over time of the PROMIS ® pediatric symptom and function measures in cancer, nephrotic syndrome, and sickle cell disease
This study evaluated the ability of the PROMIS Pediatric measures to detect change over time in children and adolescents with cancer, nephrotic syndrome (NS), or sickle cell disease (SCD).MethodsParticipants (8 –17 years) completed measures of fatigue, pain interference, anger, anxiety, depressive symptoms, mobility, upper extremity, and peer relationships at three or four time points (T1–T4). Between T1 and T2, children with cancer received chemotherapy and children with SCD experienced a pain exacer bation. Children with NS were first assessed during active disease (T2), with T3 and T4 conducted at disea...
Source: Quality of Life Research - September 7, 2017 Category: Health Management Source Type: research

One question might be capable of replacing the Shoulder Pain and Disability Index (SPADI) when measuring disability: a prospective cohort study
ConclusionThe single question is a reasonable substitute for the SPADI and can be used as a screening instrument for shoulder disability in primary clinical practice. It has slightly poorer predictive power and should therefore not be used for prognosis. (Source: Quality of Life Research)
Source: Quality of Life Research - September 7, 2017 Category: Health Management Source Type: research

Prevalence of patient-reported gastrointestinal symptoms and agreement with clinician toxicity assessments in radiation therapy for anal cancer
ConclusionsAcute GI toxicity during definitive CRT for anal cancer was most significant during weeks 4 –5, while rectal bleeding improved during treatment. Discrepancies in patient- and clinician-reported symptoms demonstrate the potential for patient-reported outcomes to be useful tools for anal cancer clinical assessments. (Source: Quality of Life Research)
Source: Quality of Life Research - September 7, 2017 Category: Health Management Source Type: research

Assessing reserve-building pursuits and person characteristics: psychometric validation of the Reserve-Building Measure
ConclusionsThe Reserve-Building Measure provides a measure of activities and person-factors related to reserve that may potentially be useful in prospective research. (Source: Quality of Life Research)
Source: Quality of Life Research - September 6, 2017 Category: Health Management Source Type: research