Quality of life measures in older adults after traumatic brain injury: a systematic review
ConclusionsFindings based on the comparison of reliability and construct validity of the Qol measures reported in this review suggest that no single instrument is superior to all others for our study population. Future research in this field should include the enrollment of larger study samples of older adults. Without these future efforts, the ability to detect an optimal Qol measure will be hindered. (Source: Quality of Life Research)
Source: Quality of Life Research - September 14, 2019 Category: Health Management Source Type: research

Influence of elicitation procedure and phrasing on health state valuations in experience-based time trade-off tasks among diabetes patients in China
ConclusionsThe choice of elicitation procedure as well as the description of experience-based TTO tasks may influence the valuation of health states. Further research is warranted, also in other cultural contexts, to further explore these findings. (Source: Quality of Life Research)
Source: Quality of Life Research - September 12, 2019 Category: Health Management Source Type: research

Introduction to “Advancing quality‑of‑life research by deepening our understanding of response shift”
(Source: Quality of Life Research)
Source: Quality of Life Research - September 12, 2019 Category: Health Management Source Type: research

Conceptual and methodological considerations regarding appraisal and response shift
(Source: Quality of Life Research)
Source: Quality of Life Research - September 12, 2019 Category: Health Management Source Type: research

Orthostatic hypotension and health-related quality of life among community-living older people in Korea
AbstractPurposeTo investigate the association of orthostatic hypotension (OH) with health-related quality of life (HRQoL) in older people living in the community.MethodsA cross-sectional design was used. A total of 217 participants aged 65 and older were classified as having OH if their systolic or diastolic blood pressure showed a drop of  ≥ 20 mmHg systolic blood pressure or ≥ 10 mmHg diastolic blood pressure, respectively, within 3 min of standing. Participants provided demographic and medical information and responded to questionnaires about their HRQoL (EuroQoL-5D-3L), ...
Source: Quality of Life Research - September 12, 2019 Category: Health Management Source Type: research

The influence of the Pilates method on quality of life and bone remodelling in older women: a controlled study
ConclusionThe group of women submitted to Pilates presented improved quality of life but without changes in bone remodeling. (Source: Quality of Life Research)
Source: Quality of Life Research - September 11, 2019 Category: Health Management Source Type: research

Psychometric properties of the PROMIS ® Fatigue Short Form 7a among adults with myalgic encephalomyelitis/chronic fatigue syndrome
AbstractPurposeTo evaluate the psychometric properties of the Patient-Reported Outcome Measurement Information System ® Fatigue Short Form 7a (PROMIS F-SF) among people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).MethodsAnalyses were conducted using data from the Multi-Site Clinical Assessment of ME/CFS study, which recruited participants from seven ME/CFS specialty clinics across the US. Baseline and follow-up data from ME/CFS participants and healthy controls were used. Ceiling/Floor effects, internal consistency reliability, differential item functioning (DIF), known-groups validity, and respons...
Source: Quality of Life Research - September 10, 2019 Category: Health Management Source Type: research

Personality types and subjective well-being among people living with HIV: a latent profile analysis
ConclusionIdentifying personality types in clinical settings enables more comprehensive understanding of interrelations between personality and health. Regarding PLWH, the typological approach may shed new light on ambiguous results devoted to the role of personality in well-being of these patients. (Source: Quality of Life Research)
Source: Quality of Life Research - September 10, 2019 Category: Health Management Source Type: research

Appraisal as a unifying theory of response shift: continuing the conversation
(Source: Quality of Life Research)
Source: Quality of Life Research - September 10, 2019 Category: Health Management Source Type: research

Relationships between cognition, function, and quality of life among HIV+ Canadian men
ConclusionThe biopsychosocial model showed good fit, with RMSEA  
Source: Quality of Life Research - September 9, 2019 Category: Health Management Source Type: research

Author index
(Source: Quality of Life Research)
Source: Quality of Life Research - September 6, 2019 Category: Health Management Source Type: research

Feasibility and acceptability of intensive longitudinal data collection of activity and patient-reported outcomes during chemotherapy for breast cancer
ConclusionsFindings indicate EMA methods are feasible for breast cancer patients undergoing chemotherapy. EMA may help us better understand the biopsychosocial processes underlying breast cancer patients ’ activity in the context of daily life. (Source: Quality of Life Research)
Source: Quality of Life Research - September 6, 2019 Category: Health Management Source Type: research

The enhancing effects of Biobran/MGN-3, an arabinoxylan rice bran, on healthy old adults ’ health-related quality of life: a randomized, double-blind, placebo-controlled clinical trial
ConclusionThese results show that Biobran/MGN-3 is a promising psychoneuroimmune modulatory agent that could improve the HRQOL in healthy old adults. (Source: Quality of Life Research)
Source: Quality of Life Research - September 5, 2019 Category: Health Management Source Type: research

Viewing assessments of patient-reported heath status as conversations: Implications for developing and evaluating patient-reported outcome measures
AbstractPatient-reported outcome measures (PROMs) are frequently used in research to reflect the patient ’s perspective. In this commentary, I argue that further improvements can be made in how we develop and evaluate PROMs by viewing assessment as a type of conversation. Philosophically speaking, a PROM assessment can be conceptualized as a formal conversation that serves as a model of an informal, longer, and more nuanced conversation with a research participant about their health experience. Psychologically speaking, evidence from research in survey methodology and discursive psychology shows that respondents to s...
Source: Quality of Life Research - September 4, 2019 Category: Health Management Source Type: research

Development of Japanese utility weights for the Adult Social Care Outcomes Toolkit (ASCOT) SCT4
ConclusionsWe successfully obtained Japanese utility weights for ASCOT SCT4. This will contribute to the measurement and understanding of social care outcomes. (Source: Quality of Life Research)
Source: Quality of Life Research - September 4, 2019 Category: Health Management Source Type: research

German value sets for the EORTC QLU-C10D, a cancer-specific utility instrument based on the EORTC QLQ-C30
ConclusionThis study established German utility weights for the cancer-specific utility instrument QLU-C10D. (Source: Quality of Life Research)
Source: Quality of Life Research - September 4, 2019 Category: Health Management Source Type: research

26th Annual Conference of the International Society for Quality of Life Research
(Source: Quality of Life Research)
Source: Quality of Life Research - September 4, 2019 Category: Health Management Source Type: research

Age-specific trends in health-related quality of life among US adults: findings from National Health and Nutrition Examination Survey, 2001 –2016
AbstractPurposeHealth-related quality of life (HRQoL) is an important indicator of population health, yet no age-specific trend analyses in HRQoL have been conducted with a nationally representative sample since 2004. Therefore, to address this gap, an age-specific trend analysis of HRQoL was conducted using National Health and Nutrition Examination Surveys (NHANES) data.MethodsNHANES 2001 –2016 data (8 cycles) were examined to evaluate trends in HRQoL by age group (young adults: 21–39, middle-aged: 40–64, older adults: 65+). HRQoL was assessed by self-reported health (SRH) and number of physically unheal...
Source: Quality of Life Research - September 3, 2019 Category: Health Management Source Type: research

Factors associated with quality of life in systemic sclerosis: a cross-sectional study
AbstractIntroductionSystemic sclerosis (SSc) is a connective tissue disease characterized by progressive fibrosis of the skin and internal organs, leading to their failure and disturbances in the morphology and function of blood vessels. The disease affects people in different ways, and identifying how the difficulties and limitations are related to quality of life may contribute to designing helpful interventions. The aim of this study was to identify factors associated with quality of life in people with SSc.MethodsThis was a cross-sectional study conducted in 11 rheumatic centres in Poland. Patients diagnosed with SSc w...
Source: Quality of Life Research - September 3, 2019 Category: Health Management Source Type: research

Communicating psychosocial well-being in motor neurone disease to staff: results from a World Caf é approach
ConclusionsThis workshop raised staff awareness on communicating QoL in MND. Future work needs to look into implementing this training in clinical practice and evaluate their impact on QoL in MND. (Source: Quality of Life Research)
Source: Quality of Life Research - August 17, 2019 Category: Health Management Source Type: research

Posttraumatic stress and health-related quality of life in parents of children with cardiac rhythm devices
ConclusionsSpecial attention should be given to parental PTSD symptoms in the clinical follow-up of PM and ICD patients as some parents might probably benefit from psychological support. (Source: Quality of Life Research)
Source: Quality of Life Research - August 17, 2019 Category: Health Management Source Type: research

Psychometric properties and cross-language equivalence of the revised Bristol Rheumatoid Arthritis Fatigue and the Rheumatoid Arthritis Impact of Disease scales in rheumatoid arthritis
ConclusionThis study supports the cross-language measurement equivalence of BRAF-MDQ and RAID and provides further support for the psychometric properties of these measures in RA. (Source: Quality of Life Research)
Source: Quality of Life Research - August 17, 2019 Category: Health Management Source Type: research

Status of inflammation in relation to health related quality of life in hepatocellular carcinoma patients
ConclusionIn HCC patients, inflammatory status correlates with HRQoL at presentation. In particular, relatively stronger correlations with CRP-based markers have been observed in HRQoL scales that assess constitutional symptoms (QLQ-C30 ‘physical functioning’, ‘role functioning’, ‘fatigue’, ‘appetite loss’ and QLQ-HCC18 ‘fatigue’ and ‘nutrition’) and tumor burden (QLQ-C30 ‘pain’ and QLQ-HCC18 ‘abdominal swelling’ and ‘body image’). Future studies are warranted to evaluate whether intervention tha t reduces inflammati...
Source: Quality of Life Research - August 17, 2019 Category: Health Management Source Type: research

Methods for questionnaire design: a taxonomy linking procedures to test goals
ConclusionThe taxonomy is comprehensive, constitutes a useful tool for describing procedures used in questionnaire design, and allows for setting up a test construction plan in which the priorities among psychometric aspects are made explicit. (Source: Quality of Life Research)
Source: Quality of Life Research - August 17, 2019 Category: Health Management Source Type: research

Quality of life assessment scales in polio survivors: a scoping review
ConclusionThe information provided in this review could be used to guide instrument selection and identify the need to develop a new tool or to adapt a pre-existing scale for measuring quality of life among polio survivors. (Source: Quality of Life Research)
Source: Quality of Life Research - August 17, 2019 Category: Health Management Source Type: research

Use of an expert panel to identify domains and indicators of delirium severity
ConclusionsWe believe this work represents the first application of instrument development science to delirium. The identified content domains are inclusive of various, wide-ranging domains of delirium severity and are reflective of a consistent framework that relates delirium severity to potential clinical outcomes. Our content domain framework provides a foundation for development of delirium severity instruments that can help improve care and quality of life for patients with delirium. (Source: Quality of Life Research)
Source: Quality of Life Research - August 17, 2019 Category: Health Management Source Type: research

Health and oral health-related quality of life of children and adolescents with chronic kidney disease: a cross-sectional study
AbstractPurposeThe aim of this study was to evaluate if health and oral health status of children and adolescents with different stages of CKD are associated with their health-related quality of life (HRQoL), oral health-related quality of life (OHRQoL) and socioeconomic and demographic conditions.MethodsOne hundred children and adolescents with CKD were age and gender matched to 100 individuals without CKD (mean age  ± SD = 13.04 ± 2.57). Oral health was characterised by means of gingival bleeding index (GBI), plaque index (PI), the decayed, missing, and filled ...
Source: Quality of Life Research - August 17, 2019 Category: Health Management Source Type: research

Health state utilities associated with attributes of migraine preventive treatments based on patient and general population preferences
ConclusionsUtilities estimated from the general population sample may be used to represent route of administration and AEs in cost-utility models. Results from the patient sample indicate that these treatment characteristics have an impact on patient preference. (Source: Quality of Life Research)
Source: Quality of Life Research - August 17, 2019 Category: Health Management Source Type: research

Health utility and health-related quality of life of Japanese prostate cancer patients according to progression status measured using EQ-5D-5L and FACT-P
ConclusionsWe obtained health utility and HRQoL scores of Japanese PC patients stratified by disease progression in detail. Our results will be useful for establishing cost-effectiveness analyses in Japanese PC settings. (Source: Quality of Life Research)
Source: Quality of Life Research - August 17, 2019 Category: Health Management Source Type: research

Health-related quality of life in children after laparoscopic gastrostomy placement
AbstractIntroductionA gastrostomy placement (GP) is an established treatment to provide enteral feeding in pediatric patients with feeding difficulties aiming to improve nutritional status and health-related quality of life (HRQoL). The aim of this study was to evaluate HRQoL in children with severe feeding difficulties who have undergone GP.Materials and methodsA cross-sectional study was performed including 128 patients who had undergone laparoscopic GP (2004 –2011). HRQoL was evaluated using the validated Pediatric Quality of Life 4.0 Inventory. Multiple regression analysis was performed to identify predictors of ...
Source: Quality of Life Research - August 16, 2019 Category: Health Management Source Type: research

Next of kin ’s quality of life before and after implementation of a knowledge-based palliative care intervention in nursing homes
ConclusionThe results indicated small statistical changes regarding next of kins ’ QoL in favour of the intervention. Lessons learned from the study for future research are to include next of kin as participants at meetings about next of kin and to include more meetings about the theme next of kin. Both approaches would bring a stronger focus on the family-centred care aspect of the intervention into the education component, which this study indicates the need for.Trial registryTrial registration NCT02708498. Date of registration 26 February 2016. (Source: Quality of Life Research)
Source: Quality of Life Research - August 14, 2019 Category: Health Management Source Type: research

Establishing clinically-relevant terms and severity thresholds for Patient-Reported Outcomes Measurement Information System ® (PROMIS ® ) measures of physical function, cognitive function, and sleep disturbance in people with cancer using standard setting
ConclusionsBookmarking can be applied to develop provisional score interpretation for PROMIS measures. Patients and clinicians were frequently consistent in their bookmark placement. When there was variance, patients required more dysfunction before assigning more severity. Additional research with other cancer samples is needed to evaluate the replicability and generalizability of our findings. (Source: Quality of Life Research)
Source: Quality of Life Research - August 13, 2019 Category: Health Management Source Type: research

Increasing exercise frequency is associated with health and quality-of-life benefits for older adults
AbstractPurposeTo evaluate whether health-related quality-of-life measures can be improved in a senior population by increasing participation in an exercise program.MethodsThe study involved a nationwide sample of adults aged 65 and older (mean age 73.2 in first study year) who participated in the SilverSneakers fitness program between 2010 and 2016. We analyzed data from 7  years of program participation records and annual participant surveys. Study members completed ≥ 2 annual surveys (n = 46,564). Participation frequency change was measured by average visits per week (AVPW) to a fitne...
Source: Quality of Life Research - August 13, 2019 Category: Health Management Source Type: research

Reliability and validity of PROMIS ® pediatric family relationships short form in children 8–17 years of age with chronic disease
ConclusionsThe Family Relationships 8-item short form demonstrated adequate reliability and convergent/discriminant validity for use in pediatric chronic conditions, though scores above the mean displayed greater uncertainty. Evidence of the measure ’s reliability and validity in multiple contexts furthers the case for its use. (Source: Quality of Life Research)
Source: Quality of Life Research - August 10, 2019 Category: Health Management Source Type: research

Development of a mental health recovery module for the WHOQOL
ConclusionsImportant HRQoL issues central to mental health recovery can be reliably evaluated by using the recovery module with the WHOQOL tools. (Source: Quality of Life Research)
Source: Quality of Life Research - August 10, 2019 Category: Health Management Source Type: research

Low vision status and declining vision decrease Health-Related Quality of Life: Results from a nationwide 11-year follow-up study
ConclusionsHRQoL was significantly and meaningfully impaired even before the threshold of severe vision loss or blindness was reached. The results encourage the improvement of available treatment options aiming to postpone the onset of visual impairment or declining VA, to maintain better quality of life among the population. (Source: Quality of Life Research)
Source: Quality of Life Research - August 10, 2019 Category: Health Management Source Type: research

Cancer survivor perspectives on sharing patient-generated health data with central cancer registries
ConclusionsOur results suggest that registry-based collection of PGHD is acceptable to most cancer survivors and could facilitate registry-based efforts to collect PGHD/PROs. Central cancer registry-based collection of PGHD/PROs, especially on long-term effects, could enhance registry support of cancer control efforts including research and population health management. (Source: Quality of Life Research)
Source: Quality of Life Research - August 9, 2019 Category: Health Management Source Type: research

Exploring health-related quality of life of Spanish domestic adult adoptees: sociodemographic characteristics, chronic medical conditions, and gender differences
ConclusionsAdult adoptees are comparable to general population in terms of HRQoL, but there are associated variables (chronic medical conditions and gender) that should be considered. Post-adoption services should promote health and support in life transitions for this group. (Source: Quality of Life Research)
Source: Quality of Life Research - August 6, 2019 Category: Health Management Source Type: research

Health-related quality of life at hospital discharge as a predictor for 6-month unplanned readmission and all-cause mortality of acutely admitted older medical patients
AbstractPurposeTo assess whether health-related quality of life (HRQOL) status, using the European Quality of life-5 dimensions (EQ5D), in acutely admitted older medical patients was associated with a combined end-point including first unplanned readmission or death without prior readmission within 6  months. Secondly, to assess if HRQOL was associated with death regardless of previous readmissions.MethodsPatients from seven medical and two acute medical units were included and the EQ5D was obtained at discharge. Associations were assessed using Cox regression. Harrell ’sC-statistics indicated the predictive per...
Source: Quality of Life Research - August 3, 2019 Category: Health Management Source Type: research

Main and interactive effects of inflammation and perceived neighbourhood cohesion on psychological distress: results from a population-based study in the UK
ConclusionsPerceived neighbourhood cohesion was inversely related to psychological distress, over and above other important person- and neighbourhood-level characteristics. Inflammation was also associated with psychological distress, albeit less strongly. If these associations are causal, they suggest that promoting neighbourhood cohesion can alleviate some of the burden associated with psychological distress. (Source: Quality of Life Research)
Source: Quality of Life Research - July 10, 2019 Category: Health Management Source Type: research

The role of religious coping and social support on medication adherence and quality of life among the elderly with type 2 diabetes
ConclusionsThe impact of religiosity on medication adherence and HRQoL occurs through the mediators such as religious coping and social support. Therefore, to improve the adherence to treatment and quality of life, interventions may be designed based on these mediators. (Source: Quality of Life Research)
Source: Quality of Life Research - July 10, 2019 Category: Health Management Source Type: research

Correction to: Eculizumab improves fatigue in refractory generalized myasthenia gravis
The article “Eculizumab improves fatigue in refractory generalized myasthenia gravis”, written by “Henning Andersen, Renato Mantegazza, Jing Jing Wang, Fanny O’Brien, Kaushik Patra, James F. Howard Jr. and The REGAIN Study Group” was originally published electronically on the publisher’s internet po rtal (currently SpringerLink) on 23 March 2019 without open access. (Source: Quality of Life Research)
Source: Quality of Life Research - July 10, 2019 Category: Health Management Source Type: research

Development of a quality of life questionnaire for nursing home residents in mainland China
ConclusionsThe NH QOL questionnaire appears to be a reliable and valid instrument and should be incorporated into a set of quality measures for use with NH residents in mainland China (Source: Quality of Life Research)
Source: Quality of Life Research - July 10, 2019 Category: Health Management Source Type: research

Does social participation accelerate psychological adaptation to health shocks? Evidence from a national longitudinal survey in Japan
AbstractPurposeIt is well-known that people psychologically adapt to health shocks over time and social participation (SP) has a favourable impact on health. Combining these two understandings, the current study addresses how psychological adaptation to major health shocks was affected by SP experience one year prior to the initial diagnosis.MethodsData were collected from a twelve-wave nationwide panel survey conducted from 2005 to 2016, starting with 34,240 individuals aged 50 –59 years. Individuals who were initially diagnosed with cancer, stroke, heart disease or diabetes at any time between the second and t...
Source: Quality of Life Research - July 10, 2019 Category: Health Management Source Type: research

Measuring broader wellbeing in mental health services: validity of the German language OxCAP-MH capability instrument
ConclusionsBesides providing evidence that the OxCAP-MH measures broader wellbeing constructs beyond traditional health-related quality of life, the study also confirms the validity of the instrument for implementation in routine evaluation of mental health services. (Source: Quality of Life Research)
Source: Quality of Life Research - July 10, 2019 Category: Health Management Source Type: research

Comparison of three generic quality-of-life metrics in peripheral arterial disease patients undergoing conservative and invasive treatments
ConclusionsWe measured positive effects of revascularisation and conservative treatment on QoL a year after diagnosis, the effect of revascularisation was sustained over 2  years. The magnitude of effect varied between the metrics and was largest for the EQ-5D, which may be most suitable for QoL measurement in PAD patients. Baseline QoL influenced revascularisation effect, in clinical practice this may inform expected QoL gain in individual patients. (Source: Quality of Life Research)
Source: Quality of Life Research - July 10, 2019 Category: Health Management Source Type: research

The association between frailty and quality of life among rural community-dwelling older adults in Kegalle district of Sri Lanka: a cross-sectional study
ConclusionsFrailty was associated with a small but significant lower quality of life in this rural Sri Lankan population, which appears largely explained by ‘health’ and ‘independence, control over life and freedom’ QoL domains. Interventions aiming to improve quality of life in frail older adults should consider targeting these aspects. (Source: Quality of Life Research)
Source: Quality of Life Research - July 10, 2019 Category: Health Management Source Type: research

Exploring the patient experience of locally advanced or metastatic pancreatic cancer to inform patient-reported outcomes assessment
ConclusionsThis is the first study to develop a conceptual model of patients ’ experience of metastatic/recurrent pancreatic cancer and explore the content validity of the EORTC QLQ-C30/PAN26 following therapeutic advances. The EORTC QLQ-C30/PAN26 appears conceptually relevant; additional items to assess neuropathic side effects are recommended. A recall period should be s tated throughout to standardise responses. (Source: Quality of Life Research)
Source: Quality of Life Research - July 4, 2019 Category: Health Management Source Type: research

Lymphoma survivors ’ experience of participation in a home-based intervention post-chemotherapy
ConclusionsLymphoma survivors in this study reported participation in a home-based intervention following treatment beneficial and aided recovery.Implications for cancer survivorsA large proportion of lymphoma survivors would benefit from a rehabilitation intervention post-chemotherapy. Intervention programmes should include follow-ups to monitor progress and provide support and motivation. Health professionals should recommend healthy lifestyle guidelines to survivors on completion of treatment or refer patients to appropriate services for rehabilitation and advice. (Source: Quality of Life Research)
Source: Quality of Life Research - July 4, 2019 Category: Health Management Source Type: research

Impact of comorbidities and functional impairment on 5-year loss of health utility in patients with lower-limb osteoarthritis in the KHOALA cohort
ConclusionsFI and comorbidities are important and independent determinants of HU loss in patient with OA. Half of cases (50%) of HU loss during 5  years could be avoided by preventing comorbidities (30%) and limiting FI under patient acceptable function (20%). Caregivers should additionally pay close attention to the prevention and the treatment of comorbidities in routine management of OA. (Source: Quality of Life Research)
Source: Quality of Life Research - July 4, 2019 Category: Health Management Source Type: research