Constructing arguments for the interpretation and use of patient-reported outcome measures in research: an application of modern validity theory
AbstractThe past 100  years have witnessed an evolution of the meaning of validity and validation within the fields of education and psychology. Validity was once viewed as a property of tests and scales, but is now viewed as the extent to which theory and evidence support proposed interpretations and uses of test scor es. Uncertainty about what types of validity evidence were needed motivated the current “argument-based” approach, as reflected in the 2014Standards for Educational and Psychological Testing. According to this approach, investigators should delineate the assumptions required in order for a p...
Source: Quality of Life Research - February 25, 2021 Category: Health Management Source Type: research

A closer look at quality of life in the hepatocellular carcinoma literature
ConclusionThe results of this systematic review demonstrate the need for future research into QOL in the advanced stage of QOL. It also identified gap in the literature concerning the definition of QOL in HCC and the spiritual domain of QOL in HCC. (Source: Quality of Life Research)
Source: Quality of Life Research - February 24, 2021 Category: Health Management Source Type: research

The prediction of mortality by quality of life assessed with the WHOQOL-BREF: a longitudinal analysis at the domain and item levels using a seven-year follow-up period
ConclusionOur study showed that all four quality of life domains belonging to the WHOQOL-BREF predict mortality in a sample of Dutch community-dwelling older people using a follow-up period of 7 years. Two AUCs were above threshold (psychological, physical health). The findings offer health care and welfare professionals evidence for conducting interventions to reduce the risk of premature death. (Source: Quality of Life Research)
Source: Quality of Life Research - February 23, 2021 Category: Health Management Source Type: research

Effectiveness of motivational interviewing on anxiety, depression, sleep quality and quality of life in heart failure patients: secondary analysis of the MOTIVATE-HF randomized controlled trial
ConclusionClinicians may want to include both patients and caregivers when providing MI interventions. Further research is needed to investigate the required intensity of MI to be effective on sleep quality, anxiety and depression (ClinicalTrials.gov Identifier: NCT02894502). (Source: Quality of Life Research)
Source: Quality of Life Research - February 22, 2021 Category: Health Management Source Type: research

Demographic and functional differences among social security disability claimants
ConclusionDIF impacts function measurement and is important when assessing psychometric characteristics of instruments. Self-report measures should include diverse samples to conduct similar analyses. WD-FAB 2.0 scores are now reflections of function with reduced bias related to gender, race/ethnicity, or age. (Source: Quality of Life Research)
Source: Quality of Life Research - February 21, 2021 Category: Health Management Source Type: research

The impact of transvenous cardioverter-defibrillator implantation on quality of life, depression and optimism in dialysis patients: report on the secondary outcome of QOL in the randomized controlled ICD2 trial
ConclusionsIn our population of patients on dialysis, ICD implantation did not affect QoL, mood or dispositional optimism significantly during 1-year follow-up.Clinical Trial RegistrationUnique identifier: ISRCTN20479861.http://www.controlled-trials.com. (Source: Quality of Life Research)
Source: Quality of Life Research - February 19, 2021 Category: Health Management Source Type: research

Psychometric properties of the Patient-Reported Outcomes Measurement Information System (PROMIS ®) pediatric item bank peer relationships in the Dutch general population
This study aimed to validate the PROMIS Pediatric item bank v2.0 Peer Relationships and compare reliability of the full item bank to its short form, computerized adaptive test (CAT) and the social functioning (SF) subscale of the Pediatric Quality of Life Inventory (PedsQL ™).MethodsChildren aged 8 –18 (n = 1327), representative of the Dutch population completed the Peer Relationships item bank. A graded response model (GRM) was fit to the data. Structural validity was assessed by checking item-fit statistics (S-X2,p   0.50) was expected between Peer Relationships and the PedsQL SF s...
Source: Quality of Life Research - February 19, 2021 Category: Health Management Source Type: research

Comparison of the anxiety, depression and their relationship to quality of life among adult acute leukemia patients and their family caregivers: a cross-sectional study in China
In this study, adult AL Patients’ sex, patients’ depression score, whether patients achieving a CR or not, education, FCs’ depression score, patients’ social/family well-being and emotional well-being were significantly associated with patients’ anxiety or depression (p 
Source: Quality of Life Research - February 17, 2021 Category: Health Management Source Type: research

What ’s important when caring for a loved one? Population-based preference weights for the Adult Social Care Outcomes Toolkit for informal carers (ASCOT-Carer) for Austria
ConclusionThe paper provides preference weights for the German version of ASCOT-Carer to be used in Austrian populations. Furthermore, the results give insight into which LTC-QoL-outcomes are seen as particularly (un)desirable, and may therefore help to better tailor services directed at informal carers and the persons they care for. (Source: Quality of Life Research)
Source: Quality of Life Research - February 17, 2021 Category: Health Management Source Type: research

The association between social isolation and musculoskeletal health in older community-dwelling adults: findings from the Hertfordshire Cohort Study
AbstractPurposeSocial isolation has been associated with both physical and psychological adverse outcomes and is prevalent in older adults. We investigated the impact of social isolation on bone mineral density (BMD) and physical capability in community-dwelling older adults.MethodsData were collected in 2011 and 2017 from the Hertfordshire Cohort Study. In 2011, we assessed social isolation using the six-item Lubben Social Network Scale (LSNS-6) and the Maastricht Social Participation Profile (MSSP) and depressive and anxiety symptoms using the Hospital Anxiety and Depression Scale (HADS). Physical capability was assessed...
Source: Quality of Life Research - February 17, 2021 Category: Health Management Source Type: research

Critical examination of current response shift methods and proposal for advancing new methods
ConclusionNo single response shift method is optimal; each method has strengths and limitations. Additionally, extra steps need to be taken to correctly interpret the results. Advancing new methods and conducting computer simulation studies that compare methods are recommended to move response shift research forward. (Source: Quality of Life Research)
Source: Quality of Life Research - February 17, 2021 Category: Health Management Source Type: research

Identifying the minimal important difference in patient-reported outcome measures in the field of people with severe mental illness: a pre –post-analysis of the Illness Management and Recovery Programme
ConclusionTaking into account the low sample size and the gender covariate, we conclude that the MHRM was capable of showing the most relevant and meaningful change as a result of the IMR in persons with SMI. (Source: Quality of Life Research)
Source: Quality of Life Research - February 17, 2021 Category: Health Management Source Type: research

Continuous quality improvement in measure development: Lessons from building a novel clinical feedback system
ConclusionIn developing a new clinical feedback system, the less-frequently-discussed practical aspects of measure development require close attention. Specifically, being willing to embrace change, planning for iteration, and systematically seeking stakeholder feedback are identified as central methods for improving clinical feedback systems. (Source: Quality of Life Research)
Source: Quality of Life Research - February 16, 2021 Category: Health Management Source Type: research

Willingness to pay for a quality-adjusted life year for depressive disorders compared to heart disease based on population preferences
ConclusionResults indicate that respondents valued the necessity of paying for treatment higher when presented with heart disease compared to depression. (Source: Quality of Life Research)
Source: Quality of Life Research - February 15, 2021 Category: Health Management Source Type: research

Health-related quality of life and its predictors among adults living with HIV/AIDS and receiving antiretroviral therapy in Pakistan
ConclusionsThe current findings have shown that PLWHA in Pakistan adherent to ART had a good overall HRQoL, though with significantly higher depression. Some of the factors identified are amenable to institution-based interventions while mitigating depression to enhance the HRQoL of PLWHA in Pakistan. The HRQoL determined in this study could be useful for future economic evaluation studies for ART  and in designing future interventions. (Source: Quality of Life Research)
Source: Quality of Life Research - February 13, 2021 Category: Health Management Source Type: research

The longitudinal validity of proxy-reported CHU9D
The objective of this study was to examine the construct validity and responsiveness of the proxy-reported (parent) CHU9D in a mental health setting using utility weights derived from an adult and adolescent population, respectively.MethodsThe discriminant validity and convergent validity were examined using the mental health-specific ‘The Strengths and Difficulties Questionnaire’ (SDQ) and the generic KIDSCREEN-27. Responsiveness was assessed by examining the floor-ceiling effects, the magnitude of change over time, and the ability to differentiate between improvement and no improvement.ResultsThe study includ...
Source: Quality of Life Research - February 13, 2021 Category: Health Management Source Type: research

Patient-reported outcomes and the identification of subgroups of atrial fibrillation patients: a retrospective cohort study of linked clinical registry and administrative data
ConclusionUsing growth mixture models, we found that not all health trajectories are the same. These models can help to understand variability in trajectories with different patient characteristics that could inform tailored interventions and patient education strategies. (Source: Quality of Life Research)
Source: Quality of Life Research - February 12, 2021 Category: Health Management Source Type: research

Use of the Long-Term Conditions Questionnaire (LTCQ) for monitoring health-related quality of life in people affected by cognitive impairment including dementia: pilot study in UK memory clinic services
ConclusionLTCQ is a valid means of assessing health-related quality of life for people living with cognitive impairment (including dementia) in the early period of support following diagnosis. Owing to high levels of multimorbidity in this patient population, LTCQ offers an advantage over dementia-specific measures in capturing the cumulative impact of all LTCs experienced by the patient. (Source: Quality of Life Research)
Source: Quality of Life Research - February 11, 2021 Category: Health Management Source Type: research

Moving beyond family: unequal burden across mental health patients ’ social networks
ConclusionMental health patients put a burden on their frequent contacts outside core families, especially when their problems were more severe. Public health policies should attend to the quality of life of mental health patients ’ all types of acquaintances in the wider society. (Source: Quality of Life Research)
Source: Quality of Life Research - February 10, 2021 Category: Health Management Source Type: research

Mental component of health-related quality of life is an independent predictor of incident functional disability among community-dwelling older people: a prospective cohort study
ConclusionThe MCS is an independent predictor of functional disability among high-functioning older adults. This suggests that strategies focused on mental HRQOL are important for realizing a healthy, long-lived society. (Source: Quality of Life Research)
Source: Quality of Life Research - February 9, 2021 Category: Health Management Source Type: research

The hypospadias-specific health-related quality of life conceptual framework: a scoping review of the literature
ConclusionThis novel conceptual framework provides a foundation for understanding disease-specific HRQoL in individuals with HS and may serve as a guide for the conduct of future qualitative studies of the HS population. The overlapping biopsychosocial domains illustrate the possible effects of HS on day-to-day life. This framework may guide future surgical, clinical, and behavioral interventions that aim to improve medical care and quality of life outcomes for HS patients. (Source: Quality of Life Research)
Source: Quality of Life Research - February 9, 2021 Category: Health Management Source Type: research

Psycholinguistic features, design attributes, and respondent-reported cognition predict response time to patient-reported outcome measure items
ConclusionCompleting a PROM requires multiple cognitive skills (e.g., memory, executive functioning) and appraisal processes. Response time is a means of operationalizing the amount or difficulty of cognitive processing, and this report indicates several aspects of PROM design that relate to a measure ’s cognitive burden. However, future research with better experimental control is needed. (Source: Quality of Life Research)
Source: Quality of Life Research - February 8, 2021 Category: Health Management Source Type: research

Using structural equation modeling to investigate change and response shift in patient-reported outcomes: practical considerations and recommendations
ConclusionAppropriate applications and interpretations of SEM for the detection of response shift will help to improve our understanding of response shift phenomena and thus change in PROs. Better understanding of patients ’ perceived health trajectories will ultimately help to adopt more effective treatments and thus enhance patients’ wellbeing. (Source: Quality of Life Research)
Source: Quality of Life Research - February 7, 2021 Category: Health Management Source Type: research

What is QOL in children and adolescents with physical disabilities? A thematic synthesis of pediatric QOL literature
ConclusionsIn conclusion, pediatric QOL for children with disabilities is formed by their thoughts and feelings, being accepted by society, being able to forge an identity that is beyond their disability, having autonomy, and having a hope for the future. The resulting QOL framework proposed here can also aid future development of QOL measures in children with physical disabilities. (Source: Quality of Life Research)
Source: Quality of Life Research - February 7, 2021 Category: Health Management Source Type: research

Quality of life in patients with type 2 diabetes after switching to insulin degludec: results from a cross-sectional survey
AbstractPurposeFive quality of life (QoL) domains are particularly important to patients with type 2 diabetes (T2D) using basal insulin —sense of physical well-being, sense of safety regarding hypoglycemia, sense of diabetes as burdensome, feelings of freedom and flexibility, and sleep quality.MethodsAn online survey assessed these QoL domains in adult patients with T2D in the USA who had switched from a previous basal insulin to insulin degludec (IDeg): modified versions of the World Health Organization (Five) Well-Being Index (WHO-5), Hypoglycemia Attitudes and Behavior Scale (HABS; confidence and anxiety subscales...
Source: Quality of Life Research - February 7, 2021 Category: Health Management Source Type: research

Utility estimations of health states of older Australian women with atrial fibrillation using SF-6D
ConclusionThis study presents health utility estimates for older women with AF. These estimates can be used in future clinical and economic research. The study also highlights better health utilities for women living in regional and remote areas, which requires further exploration. (Source: Quality of Life Research)
Source: Quality of Life Research - February 7, 2021 Category: Health Management Source Type: research

Frequency and influence of “not relevant” responses on the Dermatology Life Quality Index among adults with atopic dermatitis
ConclusionNRRs on the DLQI are common among adults with atopic dermatitis and differ across sociodemographic characteristics, suggesting issues with content validity. There is not a clear association between NRRs and other measures of disease severity among adults with mostly mild atopic dermatitis. (Source: Quality of Life Research)
Source: Quality of Life Research - February 4, 2021 Category: Health Management Source Type: research

The measurement performance of the EQ-5D-5L versus EQ-5D-3L in patients with hidradenitis suppurativa
This study aims to compare the measurement properties of the two adult versions of EQ-5D (EQ-5D-3L and EQ-5D-5L) in patients with HS.MethodsWe recruited 200 consecutive patients with HS (mean age 37 years, 38% severe or very severe HS) to participate in a multicentre cross-sectional survey. Patients completed the EQ-5D-3L, EQ-5D-5L, Dermatology Life Quality Index (DLQI) and Skindex-16 questionnaires.ResultsMore than twice as many different health state profiles occurred in the EQ-5D-5L compared to the EQ-5D-3L (101 vs. 43). A significant reduction in ceiling effect was found for the mobility, self-care and usual activities...
Source: Quality of Life Research - February 3, 2021 Category: Health Management Source Type: research

Adverse childhood experiences and impact on quality of life in adulthood: development and validation of a short difficult childhood questionnaire in a large population-based health survey
We examined the DCQ’s factor structure, internal consistency, and discriminant validity in a multi-group confirmatory factor analysis. As a group variable, we used whether the respondent had the ACE of parental alcohol use disorder (adult children of alcoholics; ACOA). To assess the DCQ’s convergent validity, we used latent regression analysis with adulthood quality of life (QoL) as the outcome and mental distress and loneliness as potential mediators.ResultsThe DCQ ’s latent mean was 0.86 (95% CI 0.82–0.90,p 
Source: Quality of Life Research - February 3, 2021 Category: Health Management Source Type: research

Life experiences of adult heart transplant recipients: a new life, challenges, and coping
ConclusionAt the end of the study, the experiences of heart transplant recipients were obtained regarding a new life with a new heart, challenges, and coping. The study results provide an insight into the challenges that the heart transplant recipients face and their coping strategies, guiding the healthcare professionals. The challenges and relevant coping strategies of heart transplant recipients may be integrated into clinical practice and may help plan patient ’s care. The results may also be used to design and implement an intervention program to improve care for these patients. (Source: Quality of Life Research)
Source: Quality of Life Research - February 1, 2021 Category: Health Management Source Type: research

Relationship between quality of life and social integration among patients with schizophrenia attending a Nigerian tertiary hospital
ConclusionThere is a need to pay closer attention to social outcome measures such as quality of life and level of social integration among patients with schizophrenia who come in contact with psychiatry services, and not just on symptom remission only. (Source: Quality of Life Research)
Source: Quality of Life Research - February 1, 2021 Category: Health Management Source Type: research

Development of screening questions for doctor –patient consultation assessing the quality of life and psychosocial burden of glioma patients: an explorative study
ConclusionThese questions represent a basis for further research regarding their application in neuro-oncological clinical routine. (Source: Quality of Life Research)
Source: Quality of Life Research - January 31, 2021 Category: Health Management Source Type: research

Dutch utility weights for the EORTC cancer-specific utility instrument: the Dutch EORTC QLU-C10D
ConclusionDutch utility decrements were generated for the QLU-C10D. These are important for evaluating the cost-utility of new cancer treatments and supportive care interventions. Further insight is warranted into the added value of the QLU-C10D alongside other utility instruments. (Source: Quality of Life Research)
Source: Quality of Life Research - January 29, 2021 Category: Health Management Source Type: research

The validity of proxy responses on patient-reported outcome measures: Are proxies a reliable alternative to stroke patients ’ self-report?
ConclusionsBoth patient- and proxy-reported PROMs demonstrated strong validity. Only patient-reported PROMs were responsive to change, and proxies had worse validity for patients  ≤ 3 months from stroke but better validity for patients >  3 months from stroke. These findings justify the utilization of proxy responses in stroke patients >  3 months from stroke. (Source: Quality of Life Research)
Source: Quality of Life Research - January 28, 2021 Category: Health Management Source Type: research

Cross ‑cultural adaptation, construct validity, reliability, and responsiveness of the Thai version of the Patient-Rated Wrist/Hand Evaluation (Thai PRWHE)
AbstractPurposeTo translate the Patient-Rated Wrist/Hand Evaluation (PRWHE) which is widely used as the evaluation in healthcare and research system in wrist/hand disorder patients into Thai (Thai PRWHE) and to examine its psychometric properties.MethodsThe PRWHE was translated to Thai, including cross-cultural adaptations, following standard guidelines. Psychometric properties were evaluated with 292 wrist/hand musculoskeletal disorder patients. Internal consistency was assessed using Cronbach ’s alpha. Intraclass correlation coefficient (ICC) was used to determine test–retest reliability over a 7-day interval...
Source: Quality of Life Research - January 27, 2021 Category: Health Management Source Type: research

Development of an EORTC questionnaire measuring instrumental activities of daily living (IADL) in patients with brain tumours: phase I –III
ConclusionA phase IV validation study is needed to confirm the psychometric properties of the EORTC IADL-BN32 questionnaire in a larger international sample. (Source: Quality of Life Research)
Source: Quality of Life Research - January 26, 2021 Category: Health Management Source Type: research

Influences of health and environmental deprivation on family relationships among children with chronic disease
ConclusionsFamily relationships were weaker among older children and generally stable over time, yet fluctuated with physical and mental health. Monitoring PROMIS Family Relationships scores may facilitate referrals for chronically ill children who need support. (Source: Quality of Life Research)
Source: Quality of Life Research - January 26, 2021 Category: Health Management Source Type: research

Using confirmatory factor analysis and Rasch analysis to examine the dimensionality of The Patient Assessment of Care for Chronic Illness Care (PACIC)
ConclusionsImproving chronic disease care relies upon having validated measures to evaluate the extent to which care goals are met. With some modifications, four of the five PACIC subscales were found to be psychometrically robust. (Source: Quality of Life Research)
Source: Quality of Life Research - January 25, 2021 Category: Health Management Source Type: research

Response shift in results of patient-reported outcome measures: a commentary to The Response Shift —in Sync Working Group initiative
ConclusionFuture response shift research will benefit from collaboration among diverse people, formulating alternative hypotheses of response shift, and conducting the most conclusive studies aimed at testing these (falsification). (Source: Quality of Life Research)
Source: Quality of Life Research - January 22, 2021 Category: Health Management Source Type: research

Translation and cross-cultural adaptation of Nepali versions of the patient-reported outcomes measurement information system (PROMIS ®) pain intensity, pain interference, pain behavior, depression, and sleep disturbance short forms in chronic musculoskeletal pain
ConclusionsThe translation and review team, along with a sample from the target population with chronic musculoskeletal pain and the proofreaders considered all five PROMIS short forms relevant and comprehensible. An important next step is to evaluate the measurement properties of these instruments. (Source: Quality of Life Research)
Source: Quality of Life Research - January 22, 2021 Category: Health Management Source Type: research

COVID-19 pandemic reduces the negative perception of oral health-related quality of life in adolescents
ConclusionOverall and specific-domains CPQ-14 scores were significantly lower during the Brazilian Covid-19 outbreak, indicating a decrease in the perception of oral health problems by adolescents over that period. (Source: Quality of Life Research)
Source: Quality of Life Research - January 21, 2021 Category: Health Management Source Type: research

Subjective life expectancy and associated factors among cancer survivors over 45  years old: evidence from the CHARLS
ConclusionThe more challenging one ’s socioeconomic status is and the unhealthier one’s physical and mental conditions are, the lower one’s prospect of subjective life expectancy is. Further work is warranted to confirm the causal association between subjective life expectancy and certain characteristics in cancer survivors. (Source: Quality of Life Research)
Source: Quality of Life Research - January 19, 2021 Category: Health Management Source Type: research

Experience of women with breast cancer undergoing chemotherapy: a systematic review of qualitative research
ConclusionsAlthough the experience of women with breast cancer undergoing chemotherapy is individualized, we concluded that the distressing experience related to chemotherapy as a stimulus was viewed as a stressor that demands coping or adaptation. Based on the Lazarus stress and coping theory, the ability of a woman to appraise how chemotherapy changed her life and how she appraises her resources to cope with chemotherapy are essential. The results highlight that pre-chemotherapy care programmes, information support systems, social support groups and individual effective coping strategies are helpful in reducing treatment...
Source: Quality of Life Research - January 18, 2021 Category: Health Management Source Type: research

Health-related quality of life associated with risk of death in Brazilian dialysis patients: an eight-year cohort
ConclusionsOur data suggest that early and timely intervention measures aiming to enhance the HRQoL of dialysis patients are an essential component of professional practice and may contribute to improving the management of factors associated with dialysis patients' mortality. (Source: Quality of Life Research)
Source: Quality of Life Research - January 16, 2021 Category: Health Management Source Type: research

Properties of the EQ-5D-3L index distribution when longitudinal data from 27,328 spine surgery procedures are applied to nine national EQ-5D-3L value sets
ConclusionsWe found a marked variability in EQ-5D-3L index density functions when a single large data set was applied to 9 national EQ-5D-3L value sets. Consequently, studies that aggregate international data, e.g. meta-analyses, may produce misleading results if the underlying differences in EQ-5D-3L index density functions are inadequately handled. On the basis of the results of our study, we recommend against pooling of different national EQ-5D-3L index data. (Source: Quality of Life Research)
Source: Quality of Life Research - January 15, 2021 Category: Health Management Source Type: research

Valuing health-related quality of life using a hybrid approach: Tunisian value set for the EQ-5D-3L
ConclusionThis study provides utility values for EQ-5D-3L health states for the Tunisian population. This value set will be used in economic evaluations of health technologies and for Tunisian health policy decision-making. (Source: Quality of Life Research)
Source: Quality of Life Research - January 14, 2021 Category: Health Management Source Type: research

Differences in mental health and health-related quality of life between the Israeli and Italian population during a COVID-19 quarantine
ConclusionThe results suggest that early monitoring of anxiety and depression in situations such as quarantine may detect the risk for decline in health-related quality of life. Establishment of professional interventions is needed in order to prevent the negative health consequences of the pandemic-related policy. (Source: Quality of Life Research)
Source: Quality of Life Research - January 14, 2021 Category: Health Management Source Type: research

Gender differences in quality of life, physical activity, and risk of hypertension among sedentary occupation workers
ConclusionSedentary occupation workers reported modest level of QoL and were at high risk of hypertension. Socio-demographic factors, physical activity, and health status were correlated to QoL. Gender differences existed in QoL, physical activity, and risk of hypertension. Improving employees ’ QoL through adopting strategies to promote healthy lifestyle in work settings should be activated. Further studies are recommended to explore cultural factors that drive gender differences in QoL. (Source: Quality of Life Research)
Source: Quality of Life Research - January 14, 2021 Category: Health Management Source Type: research

Examination of individual and multiple comorbid conditions and health-related quality of life in older cancer survivors
We examined associations between HRQOL outcomes (pain, fatigue, physical function), individual comorbidities (cardiovascular disease [CVD], lung disease, diabetes, arthritis) and total comorbidity (cancer-only, cancer + 1 condition, cancer + 2 or more condition s).MethodsUtilizing a population-based sample of 2019 older cancer survivors, we tested associations between comorbid conditions and the HRQOL outcomes using generalized linear models. HRQOL domains were assessed using Patient-Reported Outcome Measurement Information System® (PROMIS®) measures. Comorbidity was assessed via self-re...
Source: Quality of Life Research - January 14, 2021 Category: Health Management Source Type: research

Evaluation of caregiver burden and coping strategies in parents of paediatric familial Mediterranean fever patients in relation to illness severity, therapy and health-related quality of life
AbstractPurposeThe study aimed to determine the caregiver burden and coping strategies in caregivers of familial Mediterranean fever (FMF) patients in relation to illness severity, therapy and health-related quality of life (HRQoL).MethodsThe study included 171 paediatric FMF patients and their caregivers (parents). The caregivers were asked to complete a socio-demographic form, the Zarit caregiver burden interview (ZCBI) and the Brief COPE. The patients and their caregivers were asked to complete the KINDer Lebensqualit ätsfragebogen questionnaire (self-report and proxy report, respectively) for assessing HRQoL. The ...
Source: Quality of Life Research - January 14, 2021 Category: Health Management Source Type: research