Multidimensional Health-related Quality Of Life Research Articles

Decomposition of Quality-Adjusted Life Expectancy Inequalities by Mortality and Health-Related Quality of Life Dimensions.

Quality-adjusted life expectancy (QALE) combines mortality risk and multidimensional health-related quality of life (HRQoL) information to measure healthy life expectancy in terms of quality-adjusted life years (QALYs). This paper estimates the relative importance of individual quality of life dimensions in explaining inequalities in QALE. We combined EQ-5D-5L data from the Health Survey for England for 2017 and 2018 (N = 14,412) with full population mortality data from the Office for National Statistics to calculate QALE by age, sex and deprivation quintile. The effect of HRQoL dimensions on the socioeconomic gradient in QALE was decomposed using an iterative imputation approach, in which inequalities associated with socioeconomic status in each domain were removed by imputing the response distribution of the richest quintile for all participants. Sampling uncertainty in the HRQoL data was evaluated using bootstrapping. People in the least deprived fifth of neighbourhoods in England can expect to live 7.0 years longer and experience 11.1 more QALYs than those in the most deprived fifth. Inequalities in HRQoL accounted for 28.0% and 45.7% of QALE inequalities for males and females, respectively. Pain/discomfort, anxiety/depression and mobility were the most influential HRQoL domains. Our results identify the extent of inequalities associated with socioeconomic status in lifetime health and the relative importance of inequalities by mortality and HRQoL. The contributions of the individual dimensions of HRQoL towards lifetime inequalities vary substantially by sex. Our findings can help to identify the types of interventions most likely to alleviate health inequalities, which may be different for males and females.

Prospective evaluation of multidimensional health-related quality of life after endoscopic endonasal surgery for pituitary adenomas using the endoscopic endonasal sinus and skull base surgery questionnaire.

Social functioning is an important factor in the evaluation of postoperative health-related quality of life (HRQoL) for pituitary adenoma patients. In a prospective cohort study multidimensional HRQoL of non-functioning (NFA) and functioning (FA) pituitary adenoma patients were evaluated following endoscopic endonasal surgery using the endoscopic endonasal sinus and skull base surgery questionnaire (EES-Q). Prospectively, 101 patients were included. The EES-Q was completed preoperatively and postoperatively (2 weeks, 3months, 1year). Sinonasal complaints were completed daily during the first week postoperatively. Preoperative and postoperative scores were compared. A generalized estimating equation (uni- and multivariate) analysis was performed to identify significant HRQoL changes related to selected covariates. Two weeks postoperatively, physical (p < .05) and social (p < .05) HRQoL are worse and psychological (p < .05) HRQoL improved compared with preoperatively. Three months postoperatively, psychological HRQoL (p=.01) trended back to baseline and no differences in physical or social HRQoL were reported. One year postoperatively, psychological (p=.02) and social (p=.04) HRQoL improved while physical HRQoL remained stable. FA patients report a worse HRQoL preoperatively (social, p < .05) and 3months postoperatively (social, p < .02 and psychological, p < .02). Sinonasal complaints peak in the first days postoperatively and gradually return to presurgical levels 3months postoperatively. The EES-Q provides meaningful information on multidimensional HRQoL to improve patient-centred health care. Social functioning remains the most difficult area in which to achieve improvements. Despite the relatively modest sample size, there is some indication that the FA group continues to show a downward trend (and thus improvement) even after 3months, when most other parameters reach stability. Level II-B.

A multicenter international prospective study of the validity and reliability of a COVID-19-specific health-related quality of life questionnaire

PurposeTo develop and validate a health-related quality of life (HRQoL) questionnaire for patients with current or previous coronavirus disease (COVID-19) in an international setting.MethodsThis multicenter international methodology study followed standardized guidelines for a four-phase questionnaire development. Here, we report on the pretesting and validation of our international questionnaire. Adults with current or previous COVID-19, in institutions or at home were eligible. In the pretesting, 54 participants completed the questionnaire followed by interviews to identify administration problems and evaluate content validity. Thereafter, 371 participants completed the revised questionnaire and a debriefing form to allow preliminary psychometric analysis. Validity and reliability were assessed (correlation-based methods, Cronbach’s α, and intra-class correlation coefficient).ResultsEleven countries within and outside Europe enrolled patients. From the pretesting, 71 of the 80 original items fulfilled the criteria for item-retention. Most participants (80%) completed the revised 71-item questionnaire within 15 min, on paper (n = 175) or digitally (n = 196). The final questionnaire included 61 items that fulfilled criteria for item retention or were important to subgroups. Item-scale correlations were > 0.7 for all but nine items. Internal consistency (range 0.68–0.92) and test–retest results (all but one scale > 0.7) were acceptable. The instrument consists of 15 multi-item scales and six single items.ConclusionThe Oslo COVID-19 QLQ-W61© is an international, stand-alone, multidimensional HRQoL questionnaire that can assess the symptoms, functioning, and overall quality of life in COVID-19 patients. It is available for use in research and clinical practice. Further psychometric validation in larger patient samples will be performed.

Extending the use of the Endoscopic Endonasal Sinus and Skull Base Surgery Questionnaire in a cross-sectional study: Patients with chronic rhinosinusitis versus healthy controls.

There are several instruments to assess health-related quality of life (HRQoL) in chronic rhinosinusitis (CRS). Unfortunately, none of them evaluates all three health domains (physical, social and psychological) important to assess the overall well-being of the patient. The Endoscopic Endonasal Sinus and Skull Base Surgery Questionnaire (EES-Q) does assess all these elements. Initially, the EES-Q is validated to evaluate the impact of endoscopic endonasal surgery (EES) on HRQoL. The aim of this study is to assess whether EES-Q outcomes differ in patients with CRS compared with healthy individuals. Therefore, extending the use of the EES-Q for all CRS patients. Cross-sectional study. Tertiary referral hospital. One hundred patients with uncontrolled CRS (50% with nasal polyps) scheduled to receive EES. The questionnaire was completed preoperatively. Healthy control subjects (n= 100) without any history of sinusitis or a known current medical treatment at a hospital were included. Mann-Whitney U test was performed to identify differences in EES-Q scores (domain scores and EES-Q score). The median EES-Q score in CRS patients (33.8) was significantly higher (p< 0.001) than in the control group (10.4). As well as the physical (52.5 vs. 16.4, p< 0.001), psychological (13.8 vs. 5.0, p< 0.001) and social (37.5 vs. 2.5, p< 0.001) domain scores. With this study, we are extending the use of the EES-Q. It indicates that the EES-Q can be a valuable clinical tool to assess multidimensional HRQoL in all patients with CRS.

Machine learning predicts clinically significant health related quality of life improvement after sensorimotor rehabilitation interventions in chronic stroke

Health related quality of life (HRQOL) reflects individuals perceived of wellness in health domains and is often deteriorated after stroke. Precise prediction of HRQOL changes after rehabilitation interventions is critical for optimizing stroke rehabilitation efficiency and efficacy. Machine learning (ML) has become a promising outcome prediction approach because of its high accuracy and easiness to use. Incorporating ML models into rehabilitation practice may facilitate efficient and accurate clinical decision making. Therefore, this study aimed to determine if ML algorithms could accurately predict clinically significant HRQOL improvements after stroke sensorimotor rehabilitation interventions and identify important predictors. Five ML algorithms including the random forest (RF), k-nearest neighbors (KNN), artificial neural network, support vector machine and logistic regression were used. Datasets from 132 people with chronic stroke were included. The Stroke Impact Scale was used for assessing multi-dimensional and global self-perceived HRQOL. Potential predictors included personal characteristics and baseline cognitive/motor/sensory/functional/HRQOL attributes. Data were divided into training and test sets. Tenfold cross-validation procedure with the training data set was used for developing models. The test set was used for determining model performance. Results revealed that RF was effective at predicting multidimensional HRQOL (accuracy: 85%; area under the receiver operating characteristic curve, AUC-ROC: 0.86) and global perceived recovery (accuracy: 80%; AUC-ROC: 0.75), and KNN was effective at predicting global perceived recovery (accuracy: 82.5%; AUC-ROC: 0.76). Age/gender, baseline HRQOL, wrist/hand muscle function, arm movement efficiency and sensory function were identified as crucial predictors. Our study indicated that RF and KNN outperformed the other three models on predicting HRQOL recovery after sensorimotor rehabilitation in stroke patients and could be considered for future clinical application.

Quality of Life of Adolescents Facing a Parental Illness: A Person-Oriented Approach.

Studies that have investigated the health-related quality of life (HRQoL) of adolescents facing a parental illness showed inconsistent results, and none used a person-oriented approach allowing for a deeper understanding of their experience. The aim of this study was to compare the HRQoL of adolescents facing a parental illness to that of their peers, and to explore their HRQoL through a person-oriented approach. The sample consisted of 1324 adolescents recruited in secondary schools (11–15 years old). Adolescents completed questionnaires assessing sociodemographic characteristics, parental illness, HRQoL (KIDSCREEN-52), and academic performance and caring activities (MACA-YC18). Adolescents facing a parental illness showed significantly lower HRQoL than their peers on all dimensions. The cluster analysis yielded five patterns of HRQoL among adolescents facing a parental illness: Low HRQoL; High HRQoL; Moderate HRQoL with High Social Acceptance; High Well-Being, High Moods and Emotions, and High Social Support and Peers. These clusters differed according to demographics, the type of parental illness, illness perception, academic performance, and level of caring activities. The Low HRQoL cluster showed especially low academic performance and high level of caring activities. This multidimensional HRQoL evaluation thus helps to foreground the diversity of these adolescents’ experiences in order to better address their needs.

Clustering of EORTC QLQ-C30 health-related quality of life scales across several cancer types: Validation study

IntroductionThe European Organisation for Research and Treatment of Cancer Quality of Life Core Questionnaire (EORTC QLQ-C30) measures 15 health-related quality of life (HRQoL) scales relevant to the disease and treatment of patients with cancer. A study by Martinelli (2011) demonstrated that these scales could be grouped into three main clusters: physical, psychological and gastrointestinal. This study aims to validate Martinelli's findings in an independent dataset and evaluate whether these clusters are consistent across cancer types and patient characteristics. MethodsPre-defined criteria for successful validation were three main clusters should emerge with a minimum R-squared value of 0.51 using pooled baseline-data. A cluster analysis was performed on the 15 QLQ-C30 HRQoL-scales in the overall dataset, as well as by cancer type and selected patient characteristics to examine the robustness of the results. ResultsThe dataset consisted of 20,066 patients pooled across 17 cancer types. Overall, three main clusters were identified (R2 = 0.61); physical-cluster included role-functioning, physical-functioning, social-functioning, fatigue, pain, and global-health status; psychological-cluster included emotional-functioning, cognitive-functioning, and insomnia; gastro-intestinal-cluster included nausea/vomiting and appetite loss. The results were consistent across different levels of disease severity, socio-demographic and clinical characteristics with minor variations by cancer type. Global-health status was found to be strongly linked to the scales included in the physical-functioning-related cluster. ConclusionThis study successfully validated prior findings by Martinelli (2011): the QLQ-C30 scales are interrelated and can be grouped into three main clusters. Knowing how these multidimensional HRQoL scales are related to each other can help clinicians and patients with cancer in managing symptom burden, guide policymakers in defining social-support plans and inform selection of HRQoL scales in future clinical trials.

Correction to: Trends and predictors of multidimensional health-related quality of life after living donor kidney transplantation

In its original publication, an erroneous version of Fig.2d was included in the manuscript. The corrected figure has now been added.

Trends and predictors of multidimensional health-related quality of life after living donor kidney transplantation.

Living donor kidney transplant (LDKT) imparts the best graft and patient survival for most end-stage kidney disease (ESKD) patients. Yet, there remains variation in post-LDKT health-related quality of life (HRQOL). Improved understanding of post-LDKT HRQOL can help identify patients for interventions to maximize the benefit of LDKT. For 477 LDKT recipients transplanted between 11/2007 and 08/2016, we assessed physical, mental, social, and kidney-targeted HRQOL pre-LDKT, as well as 3 and 12months post-operatively using the SF-36, Kidney Disease Quality of Life-Short Form (KDQOL-SF), and the Functional Assessment of Cancer Therapy-Kidney Symptom Index 19 item version (FKSI-19). We then examined trajectories of each HRQOL domain using latent growth curve models (LGCMs). We also examined associations between decline in HRQOL from 3months to 12months post-LDKT and death censored graft failure (DCGF) using Cox regression. Large magnitude effects (d > 0.80) were observed from pre- to post-LDKT change on the SF-36 Vitality scale (d = 0.81) and the KDQOL-SF Burden of Kidney Disease (d = 1.05). Older age and smaller pre- to post-LDKT decreases in serum creatinine were associated with smaller improvements on many HRQOL scales across all domains in LGCMs. Higher DCGF rates were associated with worse physical [e.g., SF-36 PCSoblique hazard ratio (HR) 1.18; 95% CI 1.01-1.38], mental (KDQOL-SF Cognitive Function HR 1.27; 95% CI 1.00-1.62), and kidney-targeted (FKSI-19HR: 1.18; 95% CI 1.00-1.38) HRQOL domains. Clinical HRQOL monitoring may help identify patients who are most likely to have failing grafts and who would benefit from post-LDKT intervention.

Multidimensional Health-Related Quality-of-Life Among Patients with Pulmonary Tuberculosis in Saudi Arabia

This study aimed to explore the multi-dimensional health-related quality of life (HRQOL) among tuberculosis patients and examined its association between with their demographic profiles. A cross-sectional survey using the Functional Assessment of Chronic Illness Therapy-Tuberculosis (FACIT-TB) was carried out on a convenience sample of 87 tuberculosis patients at a large tertiary hospital operating the National TB Control Program (NTP) under the Ministry of Health, Western Region, Saudi Arabia. The overall HRQOL of the respondents is poor, whereas the different dimensions were rated as poor to moderate. The respondents’ age, smoking status, duration of TB, experience of travelling outside KSA, and educational attainment exhibited significant association to some degree with some of the dimensions of HRQOL. Strategies to strengthen the treatment support could sustain acceptable levels of physical, social and emotional functioning among TB patients. The need to increase public awareness about tuberculosis is needed to ensure prompt healthcare seeking, early detection, adherence to remedy, and better prognosis.

The Minneapolis-Manchester Quality of Life Instrument: reliability and validity of the Adult Form in cancer survivors.

Childhood cancer survivors are at risk for deficits in health-related quality of life (HRQL) as they age. Youth (8-12years) and adolescent (13-20years) versions of the Minneapolis-Manchester Quality of Life Instrument (MMQL) have been developed to address survivor-specific issues and are currently in use; the MMQL-Adult Form has now been developed to assess HRQL in childhood cancer survivors aged 21-55years. The MMQL-Adult Form was administered to 499 adults: 65 cancer patients on-therapy, 107 off-therapy, and 327 healthy controls. Forty-four percent of patients were under 30years old at cancer diagnosis. Principal components analysis was performed. We evaluated internal consistency reliability, stability (re-administration of the MMQL-Adult Form 2weeks later), construct validity (concurrent administration of the SF-36), and known-groups validity (score comparisons across the three groups). Principal components analysis resulted in retention of 44 items across six scales: social functioning, physical functioning, cognitive functioning, outlook on life, body image, and psychological functioning. Internal consistency (Cronbach's α) was 0.80-0.90 for individual scales and 0.95 overall. Strong intraclass correlations (0.98 overall) indicated high stability. The MMQL-Adult Form distinguished between known groups; healthy controls scored better than patients on four of six scales. The MMQL-Adult Form scales correlated highly with similar SF-36 scales, demonstrating construct validity. The MMQL-Adult Form is a reliable and valid self-report instrument for measuring multidimensional HRQL in cancer survivors. Development of this instrument ensures availability of a tool enabling cross-sectional and longitudinal assessment of HRQL in childhood cancer survivors as they age.

Changes in health-related quality of life over a 1-year follow-up period in children with inflammatory bowel disease.

Little is known about disease-specific health-related quality-of-life (HRQoL) changes over time in paediatric patients with inflammatory bowel disease (IBD), and about their associations with baseline medical characteristics. In this study, 153 paediatric patients with IBD from the multicentre prospective Swiss IBD cohort study were included at baseline. Of these, 90 patients were analysed at a 1-year follow-up. Medical data were extracted from hospital records, while HRQoL data were measured using the standardized, self-report disease-specific IMPACT-III questionnaire. The IBD diagnosis of the included children was made an average of 2.0 years before their baseline assessment. Over the 1-year follow-up period, a significant increase in overall HRQoL and in the HRQoL domain 'physical functioning' was evident. On multivariate analysis, overall HRQoL changes over time were predicted by baseline HRQoL, baseline disease activity, and disease activity changes over time. HRQoL improvements were significantly associated with decreases in physician-assessed disease activity. Children reporting a low baseline HRQoL and children with inactive or mildly-active disease experienced greater improvements. Children with more severe baseline disease activity had the greatest risk for HRQoL deterioration over the 1-year follow-up period. However, among possible factors that might influence HRQoL changes over time, the child's medical characteristics explained only a small proportion of their variability in our sample. We, therefore, recommend that researchers and clinicians focus on factors that are not incorporated within the multidimensional HRQoL concept if they seek to gain better insights into factors that influence HRQoL changes over time in children with IBD.

The suitability of the GERDyzer instrument in pH-test-proven laryngopharyngeal reflux patients.

The use of validated patient-reported outcome (PRO) instruments for the treatment outcome measure of laryngopharyngeal reflux (LPR) is crucial given the lack of objective markers. However, current symptom-based PRO instruments can only partially capture the impact of LPR. The GERD Analyzer (GERDyzer), an existing disease-specific PRO instrument, which measures multidimensional health-related quality of life (HRQL) affected by the illness rather than by any specific symptoms, has been validated in patients with erosive gastroesophageal reflux disease (GERD). Following the U.S. Food and Drug Administration PRO guidance, we cross-culturally adapted the GERDyzer instrument into Chinese, and examined the qualitative and quantitative psychometric properties of the Chinese version GERDyzer in pH-test-proven LPR patients.The GERDyzer comprises 10 dimensions of HRQL, including general well-being, pain/discomfort, physical health, diet, energy, activities, leisure activities, social life, mood, and sleep. To examine the content validity, we recruited 26 pH-test-proven LPR participants to conduct 4 focus group meetings for direct patient input on clinical manifestations and HRQL impacts. We also tested the quantitative psychometric properties, including reliability, validity, and responsiveness in 100 pH-test-proven LPR patients.Saturation of concept elicitation was achieved from the 4 focus groups, and a strong conceptual match was evident between the GERDyzer contents and responses from the focus group participants. Cognitive debriefing assessment showed that the Chinese version GERDyzer was adequate for use by patients as it demonstrated linguistic validation and cultural harmonization. Quantitative psychometric properties showed evidence of high internal consistency (Cronbach α: 0.96), good to excellent test-retest reliability (intraclass correlation coefficient: 0.84-0.98). Confirmatory factor analysis supported a 2-factor structure. Convergent validity was confirmed by moderate correlation assessments referencing the Reflux Symptoms Index and the Reflux Questionnaire. The discriminant validity was supported by the ability to discriminate moderate-to-severe disease from mild disease. The responsiveness was also high in participants with and without typical GERD symptoms (effect sizes 1.20 and 1.21, respectively).In conclusion, the Chinese version GERDyzer instrument is a reliable, valid, and responsive instrument for assessing HRQL in Taiwanese patients with LPR.

Health-related quality of life in Hodgkin lymphoma: a systematic review

PurposeHodgkin Lymphoma (HL) is highly curable with well-established treatment regimens; however, the impact on patient’s health-related quality of life (HRQL) from diagnosis through survivorship is unclear. This systematic review aimed to describe the available literature on HRQL in HL, assess the quality of these studies, identify gaps in the literature and recommend further areas of research.MethodsFollowing PRISMA guidelines, we performed a systematic review to include studies assessing the HRQL in HL patients. Articles identified through database searches were screened and data extracted. Quality was evaluated using a 6-point scale, adapted from published HRQL systematic reviews.ResultsSixty five articles published between 1986 and 2015 met inclusion criteria. These included 53 (82 %) cross-sectional studies; 12 (18 %) longitudinal studies, including three embedded in randomized trials; and three additional longitudinal studies that began assessment at diagnosis. Study sample sizes of HL patients varied considerably with only five (42 %) longitudinal studies including more than 50 patients. Multidimensional HRQL was assessed in 45 studies, single HRQL domains in 22 studies, and symptoms, including fatigue, in 28 studies.ConclusionsThe majority of studies employed a cross-sectional design, enrolling HL survivors at least 10 years after the completion of therapy. Emphasis on HRQL following therapy may inform initial treatment decisions and long-term survivorship goals. We recommend that future research include prospective, longitudinal randomized designs across both treatment and time.

Development and psychometric evaluation of a health-related quality of life instrument for individuals with adult-onset hearing loss

Objective: Self-reports of ‘hearing handicap’ are available, but a comprehensive measure of health-related quality of life (HRQOL) for individuals with adult-onset hearing loss (AOHL) does not exist. Our objective was to develop and evaluate a multidimensional HRQOL instrument for individuals with AOHL. Design: The Impact of Hearing Loss Inventory Tool (IHEAR-IT) was developed using results of focus groups, a literature review, advisory expert panel input, and cognitive interviews. Study sample: The 73-item field-test instrument was completed by 409 adults (22–91 years old) with varying degrees of AOHL and from different areas of the USA. Results: Multitrait scaling analysis supported four multi-item scales and five individual items. Internal consistency reliabilities ranged from 0.93 to 0.96 for the scales. Construct validity was supported by correlations between the IHEAR-IT scales and scores on the 36-item Short Form Health Survey, version 2.0 (SF-36v2) mental composite summary (r = 0.32–0.64) and the Hearing Handicap Inventory for the Elderly/Adults (HHIE/HHIA) (r ≥ −0.70). Conclusions: The field test provides initial support for the reliability and construct validity of the IHEAR-IT for evaluating HRQOL of individuals with AOHL. Further research is needed to evaluate the responsiveness to change of the IHEAR-IT scales and identify items for a short-form.

Health-related quality of life (HRQL) in Hodgkin lymphoma (HL): A systematic review (SR).

234 Background: AlthoughHL is highly curable with well-established treatment regimens, the impact on patients' HRQL from diagnosis through survivorship is unclear. This SR aimed to: (1) describe the literature on HRQL in HL, (2) assess the quality of these studies and (3) identify gaps for future research. Methods: We performed a PRISMA-guided SR on HRQL in HL patients. Identified articles were double-screened and data extracted; quality was evaluated using a 6-point scale adapted from published HRQL SR. Results: Sixty-two articles published between 1986- 2014 met inclusion criteria. These included 50 (81%) cross-sectional studies and 12 (19%) longitudinal studies of which three were embedded in randomized trials (RTC). Only two of the RCTs followed patients from diagnosis into survivorship; three additional longitudinal studies began assessments at diagnosis. The majority (75%) of longitudinal studies were performed over the last decade. The sample size of HL patients varied considerably with only five (41%) longitudinal studies including &gt;50 patients. On average, patients in the cross sectional studies were 10-plus years off treatment. Multidimensional HRQL was assessed in 40 studies, single HRQL domains in 21 studies, and symptoms, including fatigue, in 24 studies. Quality varied by study design. Conclusions: The number and quality of studies on HRQL in HL have increased over time. To capture HRQL trajectory from diagnosis through survivorship, we recommend that future research include prospective, longitudinal randomized design across treatment and time. [Table: see text]

Talking about Height and Quality of Life: A Content-Analysis of Focus Group Discussions with Short-Statured Children and Their Parents in the US

Background: To understand what life is like for US children with a diagnosis of Growth Hormone Deficiency or Idiopathic Short Stature, the impact of short stature on Health related Quality of Life (HrQoL) was qualitatively examined and needs for care from the young patients and their parents perspective were identified. Methods: Focus group discussions with 26 American-English speaking and nine American-Spanish speaking children and their parents were conducted, transcribed verbatim and subsequently qualitatively analyzed by two independent raters, using an existing coding guideline, based on the multidimensional HrQoL concept and a special software (VERBI-Software MAXQDA 10). Results: A total of 1313 statements for the English-speaking and 447 statements for the Spanish-speaking families were categorized. In the US, the strongest frequency of mention was found for the HrQoL dimension “Social” across respondents, followed by “Treatment” and “Emotion”. Conclusion: Conducting and analyzing data generated from focus groups ensure that young patients’ experiences of disease are represented in the measure of outcomes for use in clinical trials and patient care.

Illness perceptions within 6months of cancer diagnosis are an independent prospective predictor of health-related quality of life 15months post-diagnosis.

Studies have found that illness perceptions explain significant variance in health outcomes in numerous diseases. However, most of the research is cross-sectional and non-oncological. We examined, for the first time in breast, colorectal and prostate cancer patients, if cognitive and emotional illness perceptions near diagnosis predict future multidimensional health-related quality of life (HRQoL). UK-based patients (N = 334) completed the illness perception questionnaire-revised within 6 months post-diagnosis and the quality of life in adult cancer survivors scale 15 months post-diagnosis. Sociodemographic and clinical data were obtained from medical records. Hierarchical multiple regression analyses were conducted. The sociodemographic and clinical factors collectively significantly predicted 8/12 HRQoL domains, although for 5/8 accounted for <10% of the variance. For all 12 HRQoL domains, illness perceptions collectively explained significant substantial additional variance (∆R(2) range: 5.6-27.9%), and a single illness perception questionnaire-revised dimension was the best individual predictor of 9/12 HRQoL domains. The consequences dimension independently predicted 7/12 HRQoL domains; patients who believed their cancer would have a more serious negative impact on their life reported poorer future HRQoL. The emotional representations and identity dimensions also predicted multiple HRQoL domains. Future research should focus on realising the potential of illness perceptions as a modifiable target for and mediating mechanism of interventions to improve patients' HRQoL.

Quality of Life and Functional Capacity after Long‐Term Right Ventricular Pacing in Pediatrics and Young Adults with Congenital Atrioventricular Block

Although several studies have demonstrated deleterious consequences of chronic right ventricular (RV) pacing on ventricular function and synchronicity, its effects on health-related quality of life (HRQoL) and functional exercise capacity remain uncertain. We aimed to evaluate the effect of RV pacing on HRQoL and functional capacity of children and young adults with congenital complete atrioventricular block (CCAVB). We included 66 consecutive subjects with RV cardiac pacemaker due to CCAVB and under clinical follow-up for more than 1 year. Multidimensional HRQoL scores were evaluated by Short Form-36 Health Survey (SF-36) and Child Health Questionnaire-Parent Form 50 (CHQ-PF50). Functional capacity was tested by a 6-minute walk distance test (6MWDT). Association analysis was performed to examine if any demographic and clinical characteristics were associated with lower HRQoL scores and shorter distances at the 6MWDT. Domains presenting lower HRQoL scores were vitality (64.0 ± 17.3), mental health (67.3 ± 8.0), role emotional (69.7 ± 35.8) in the SF-36 questionnaire; general health perceptions (61.3 ± 8.3), general behavior (61.9 ± 15.6), parental impact-emotional (67.7 ± 28.7) in the CHQ-PF50. Female gender (P = 0.009), left ventricular ejection fraction lower than 55% (P = 0.013), cardiovascular drugs (P = 0.003) were significantly associated with lower HRQoL scores. Average distance traveled during the 6MWDT was 539.8 ± 82.9 m. The 6MWDT showed significant association with age (P = 0.006) and cardiovascular drugs (P = 0.024). Chronic RV pacing did not affect the HRQoL and physical capacity of pediatrics and young subjects. Female gender, ventricular function, and cardiovascular drugs were associated with lower HRQoL scores. Older subjects walked shorter distances in the 6MWDT, as well as subjects who were taking cardiovascular drugs.

Patient reported outcome instruments used in clinical trials of HIV-infected adults on NNRTI-based therapy: a 10-year review.

BackgroundPatient-reported outcomes (PROs) may provide valuable information to clinicians and patients when choosing initial antiretroviral therapy.ObjectiveTo identify and classify PRO instruments used to measure treatment effects in clinical trials evaluating NNRTIs.MethodsWe conducted a structured literature review using PubMed to identify NNRTI trials published from March 2003 to February 2013. Studies identified--based on disease, instrument, PRO, and NNRTI medication terms were reviewed--to identify PRO instruments. Domains measured within each instrument were recorded to understand key areas of interest in NNRTIs.ResultsOf 189 articles reviewed, 27 validated instruments were administered in 26 unique trials, with a mean of 1.9 instruments (median: 1; range: 1–7) per trial. The Medical Outcomes Study HIV Health Survey (MOS-HIV) was the most commonly used instrument (n = 8 trials). Seventeen trials (65%) included at least one multidimensional health-related quality of life (HRQL) instrument (HIV-targeted, n = 11; general, n = 8). Other validated instruments measured sleep (n = 5), depression (n = 5), anxiety (n = 4), psychiatric symptoms (n = 2), beliefs about HIV medications (n = 2), HIV symptoms (n = 1), and stress (n = 1).ConclusionsAlthough review of recent NNRTI trials suggests a lack of consensus on the optimal PRO instruments, a typical battery is comprised of a multidimensional HRQL measure coupled with one or more symptom measures. Further work is needed to clarify advantages and disadvantages of using specific PRO instruments to measure relevant constructs and to identify the most useful batteries of instruments for NNRTI trials.