Trends In Health-related Quality Research Articles

Quality of life outcomes in patients with resectable dedifferentiated liposarcoma treated with neoadjuvant immunotherapy.

e23552 Background: Currently there is a lack of robust data on health-related quality of life outcomes for patients with retroperitoneal sarcoma. The purpose of this study was to look at trends in health-related quality of life outcomes for patients and determine what symptoms impacted patients the most. Patients with surgically resectable dedifferentiated liposarcoma who were participating in a randomized, phase II, non-comparative trial of combination nivolumab (nivo) and ipilimumab (ipi/nivo) were selected to participate in this study. Methods: Five patients were randomized to participate in structured qualitative interviews. Three patients were randomized to the nivo/ipi arm and 2 to the nivo arm. The interviews were conducted at 6 separate time points, both during receipt of neoadjuvant therapy and after tumor resection. Questions were structured around ten themes which included treatment side effects, abdominal complications, appetite, energy levels, quality of life effects, and financial complications. Patient responses were transcribed, coded, and themes in symptoms during treatment were identified. Results: Different themes in symptoms emerged during each time-period of treatment. During the pretreatment period patients were more likely to report abdominal complaints that they attributed to their primary tumor. During neoadjuvant immunotherapy (week 3) patients reported more skin complaints, including the development of rashes and pruritis. These tended to improve by their preoperative visit. Patients reported typical postoperative symptoms at their 6-week post operative visit including increases in pain medications, muscle pain, and some abdominal soreness. By one year patients reported no significant symptoms and demonstrated resolution of all prior symptoms. Overall patients reported few energy and sleep related symptoms throughout their treatment course. Conclusions: For patients with resectable dedifferentiated liposarcoma receiving immune checkpoint blockade, health-related quality of life symptoms were present throughout their treatment course. Common themes that emerged demonstrated a lack of severe symptoms experienced by patients in either arm and resolution of symptoms by one year post treatment. Our interview results can help clinicians focus on symptoms that are impactful to patients in future clinical trials.

A Pilot Study to Show Longitudinal Trends in Health-Related Quality of Life (HRQOL) in a Cohort of Breast Cancer Patients Under Treatment at a Tertiary Healthcare Facility in Bhubaneswar, India.

Breast cancer incidence has overtaken that of cervical cancer among women in India according to the Globacon 2020 reports. Cancer management is also being streamlined at the Center and district levels, such that comprehensive integrated management is offered to cases to optimize the best results. In breast cancer, there are two modes of surgery namely Breast Conservation Surgery(BCS) and Modified Radical Mastectomy (MRM) now over 2 decades, with recommended Chemo radiation depending on the extent of the disease. HRQOL (Health-related Quality of Life) studies have been done in these groups of patients, due to their added relevance in terms of the loss of a vital organ like the breast. EORTC 30 and BR23 are standardized and detailed tools that have been seen to estimate QOL, keeping in mind a whole array of domains that are affected by the disease. To evaluate the "Body Image" and "Quality of life" (QOL) in operated breast cancer patients using BR -23 and EORTC - QLQ- questionnaire at 1month (after surgery) and then 3 to 4 months after surgery. This article attempts to draw a comparison among of EORTC30 and BR 23 scores calculated for 46 breast cancer patients operated during the pandemic time in one center and consenting to repeat the measures at pre-decided three time periods during the course of management. No significant differences are noted in the mean scores for EORTC 30 and BR23 for the two types of surgeries. Visit 1 scores for both modes of surgery are over 75 and by Visit 3 become less than 55 for EORTC. BR 23 (which measures the symptoms core to Breast cancer) at all 3 visits are between 45 to 55. Friedman's test shows that the scores are not significant for age groups, the number of living children, or lifestyle factors like alcohol or tobacco chewing, though quadratic graphs depict the distinct variations in the scores at the 3 times reinforcing the need for follow-up of mental health in these subjects at intervals. The study largely brings out a strong need for repeated follow-up and counseling at regular and short intervals, post-surgery in breast cancer patients. EORTC 30 and BR 23 tools are excellent to use to essay information on the mental health of patients with breast cancer.

Sustained virologic response improved the long-term health-related quality of life in patients with chronic hepatitis C: a prospective national study in China

BackgroundTo investigate the trends in health-related quality of life (HRQoL) among hepatitis C virus (HCV) patients and to assess the longitudinal impact of antiviral therapy on their well-being.MethodsIn this prospective multicenter observational study in adults with HCV infection, sociodemographic, clinical characteristics and EQ-5D questionnaires were collected. Generalized estimating equation (GEE) models were used to assess the associations between these variables and changes in HRQoL over time.Results456 patients were included, with a median age of 46.5 (36.5–57.0) years, of which 262 (57.5%) were males and 44 (9.6%) had cirrhosis. 335 patients (73.5%) receiving antiviral therapy and 61.8% achieved sustained virologic response (SVR). The baseline EQ-5D utility and EQ-VAS were 0.916 ± 0.208 and 80.6 ± 13.0. In multivariable analysis of GEE estimation, achieving SVR24 was positively associated with EQ-5D utility (p = 0.000) and EQ-VAS (p = 0.000) over time. Age and income were shown to be significant predictors of EQ-5D utility, while gender, age and genotype were associated with EQ-VAS over time.ConclusionsSVR improved long-term HRQoL in HCV patients in the first few years following viral clearance. Certain sociodemographic factors, such as gender, age, income as well as genotype, significantly influenced long-term changes in patients’ quality of life.Trial registrationNCT01594554. Registration date: 09/05/2012.

National long-term trends in health-related quality of life using EQ-5D-3L in South Korea, 2008-2021, including the COVID-19 pandemic: a representative serial study of 2.8 million people.

There is a scarcity of literature investigating the impact of the coronavirus disease 2019 (COVID-19) pandemic on long-term trends in health-related quality of life (HrQoL) using large-scale and representative data. Thus, we aimed to investigate the nationwide and long-term trends in quality of life (QoL) using the European Quality of Life- 5 dimensions, 3-level version (EQ-5D-3L) from a Korean representative serial study of 2.8 million people, 2008-2021. This Korean study used data on adults between 2008 and 2021 who participated in the Community Health Survey. Timeframes were categorized as COVID-19 mid-pandemic (2021) and pre-pandemic (2008-2019). The mean EQ-5D-3L index for the whole population and subgroups stratified by demographic characters was evaluated for each timeframe, and differences between before and during the COVID-19 pandemic were also analyzed. 2,827,240 adults who responded to the survey, 2008-2021, were eligible for this study. Overall EQ-5D index persistently decreased from 2008-2016, then minimally decreased during the pandemic, still being much higher than forecasted before the COVID-19 pandemic. The reduction in the rate of decline in QoL after the COVID-19 outbreak was especially marked in white-collared, young adults, people with 'good' or 'very good' subjective health, and college-educated or above group. On the other hand, the previously increasing trend of QoL in the elderly group has decelerated during the pandemic, and QoL of the 'very bad' subjective health group recorded the lowest in the whole study period. The present study investigated the long-term trend of QoL in Korean adults using serial data over the past 14 years, with a special emphasis on comparing the pre- and mid-COVID-19 pandemic periods.

Time trends in health-related quality of life assessment and reporting within publications of oncology randomised phase III trials: a meta-research study

ObjectiveTo assess time trends in the inclusion of health-related quality of life (QoL) among study endpoints and in the reporting of QoL results in study publications, randomised phase III oncology...

Digital Therapeutic Self-Management Intervention in Adolescents With Inflammatory Bowel Disease.

The objective of this study was to design, code, and test the feasibility, acceptability, and preliminary efficacy of a digital therapeutic self-management tool for pediatric inflammatory bowel disease (IBD). The Self-Management Assistance for Recommended Treatment (SMART) portal development involved an iterative co-design process with a series of focus group/interview sessions with key stakeholders. Subsequently, a pilot, single-arm, open-label trial was conducted with 22 patients; medication adherence was the primary outcome. Usage data for the SMART portal were good, with patients demonstrating better engagement than parents. Results from the trial demonstrated improvement in medication adherence ( M = 24%-31%; t = 7.94, P < 0.05) and self-management barriers as well as trends in health-related quality of life and symptoms. The SMART portal is a feasible digital therapeutic self-management tool for pediatric IBD that demonstrated preliminary efficacy in this pilot trial. Large, controlled trials are needed to definitively determine the clinical efficacy of this tool.

Longitudinal trends in health-related quality of life (HRQoL) among patients treated with ivosidenib (IVO) for IDH1-mutated cholangiocarcinoma (CCA) in the ClarIDHy study.

388 Background: IVO—a first-in-class, oral, targeted inhibitor of the mutant IDH1 (mIDH1) protein, found mainly in intrahepatic CCAs (̃13% of patients globally)—is an FDA-approved therapy for the treatment of previously treated, locally advanced or metastatic mIDH1 CCA based on the results of the randomized, double-blind, phase 3 ClarIDHy study (NCT02989857). In this study, IVO significantly improved progression-free survival vs placebo (PBO) (HR = 0.37, p &lt; 0.0001), resulted in a favorable overall survival trend vs PBO, and was well tolerated (Zhu JAMA Oncol 2021; Abou-Alfa Lancet Oncol 2020). Herein we describe the longitudinal assessment of HRQoL. Methods: A total of 126 and 61 patients were randomized to IVO 500 mg daily or PBO, respectively, with crossover to IVO permitted at radiographic disease progression. HRQoL was a secondary endpoint based on assessments with the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 (EORTC QLQ-C30) and the Cholangiocarcinoma and Gallbladder Cancer module (QLQ-BIL21). Three domains of interest were prespecified: physical functioning (PF), pain, and appetite loss. After a protocol amendment, HRQoL was assessed predose on Cycle (C) 1 Day (D) 1, every 4 weeks on the first day of subsequent cycles until end of treatment (EOT), and every 12 weeks thereafter until start of new anticancer therapy (vs every 6 weeks between C1D1 and EOT in the original protocol). Mixed-effect models with repeated measurements were conducted on subscale score changes from baseline (BL). Results: At BL, EORTC QLQ-C30 and QLQ-BIL21 scores were available for 114 and 108 IVO patients and 53 and 52 PBO patients, respectively. Sample sizes for HRQoL analyses decreased in both arms over time, in part due to rapid disease progression, which is typical of CCA. No HRQoL assessments were available for PBO after C8 (Week 28), while change scores were available for some IVO patients beyond Week 52 (QLQ-C30 n = 17 at Week 52). From BL to C27D1, patients remaining on IVO tended to maintain their HRQoL, with no QLQ-C30 PF subscale change scores exceeding the threshold for clinically meaningful decline estimated from study data (12-13 points). For the small number of PBO patients with post-BL HRQoL assessments, clinically meaningful PF deterioration was observed at multiple cycles (C2D1, C3D1, C4D1, C5D1, C8D1). Similar preservation for IVO patients was observed on other prespecified subscales based on the published threshold of 10 points, indicating clinically meaningful change (ClarIDHy-based thresholds not estimable due to sample sizes). Conclusions: In ClarIDHy, patients with advanced mIDH1 CCA treated with IVO were likely to maintain their HRQoL over the duration of treatment, including those treated for relatively long periods of time (eg, 1 year). Clinical trial information: NCT02989857.

Impact of Intravenous Trehalose Administration in Patients with Niemann-Pick Disease Types A and B.

Background and Aims: Niemann–Pick disease (NPD) types A (NPA) and B (NPB) are caused by deficiency of the acid sphingomyelinase enzyme, which is encoded by the SMPD1 gene, resulting in progressive pathogenic accumulation of lipids in tissues. Trehalose has been suggested as an autophagy inducer with therapeutic neuroprotective effects. We performed a single-arm, open-label pilot study to assess the potential efficacy of trehalose treatment in patients with NPA and NPB patients. Methods: Five patients with NPD type A and B were enrolled in an open-label, single-arm clinical trial. Trehalose was administrated intravenously (IV) (15 g/week) for three months. The efficacy of trehalose in the management of clinical symptoms was evaluated in patients by assessing the quality of life, serum biomarkers, and high-resolution computed tomography (HRCT) of the lungs at the baseline and end of the interventional trial (day 0 and week 12). Results: The mean of TNO-AZL Preschool children Quality of Life (TAPQOL) scores increased in all patients after intervention at W12 compared to the baseline W0, although the difference was not statistically significant. The serum levels of lyso-SM-509 and lyso-SM were decreased in three and four patients out of five, respectively, compared with baseline. Elevated ALT and AST levels were decreased in all patients after 12 weeks of treatment; however, changes were not statistically significant. Pro-oxidant antioxidant balance (PAB) was also decreased and glutathione peroxidase (GPX) activity was increased in serum of patients at the end of the study. Imaging studies of spleen and lung HRCT showed improvement of symptoms in two patients. Conclusions: Positive trends in health-related quality of life (HRQoL), serum biomarkers, and organomegaly were observed after 3 months of treatment with trehalose in patients with NPA and NPB. Although not statistically significant, due to the small number of patients enrolled, these results are encouraging and should be further explored.

Trends in health-related quality of life of female breast cancer survivors using the Medical Expenditure Panel Survey (MEPS), 2008-2016.

In recent years, breast cancer detection and treatment have advanced. As a result, increased attention to breast cancer survivorship should have improved their health-related quality of life (HRQoL). Our aim was to examine the trends in the HRQoL of female breast cancer survivors between 2008 and 2016, to determine whether or not the increased focus on survivorship has translated into improved HRQoL. Furthermore, stratified analyses were conducted by race/ethnicity and age group and these were compared to a similar group of women without a breast cancer history. Repeated cross-sectional analyses using the Medical Expenditure Panel Survey between 2008 and 2016 were conducted. Pooled ordinary least squares (OLS) regression was used to examine the trends in physical component scores (PCS-12) and mental component scores (MCS-12) among breast cancer survivors and a similar population of women without a breast cancer history. Analyses stratified by race/ethnicity and age group were also conducted. Among breast cancer survivors, after adjusting for confounders, there was no change in PCS-12 scores over time, but the MCS-12 scores increased by 0.27 points (95% CI 0.09-0.45). Those without a history of breast cancer had mean PCS-12 scores that were 0.13 points greater each year (95% CI 0.02-0.24) while their mean MCS-12 scores were 0.10 (95% CI 0.00-0.21) points greater each year. After stratifying by race/ethnicity, Hispanic breast cancer survivors had a small increase in PCS-12 (β: 0.65; 95% CI 0.01-1.29), and MCS-12 scores (β: 0.70; 95% CI0.06-1.33) over time. Similar small effects were found when stratified by age group, both among breast cancer survivors and those without a history of breast cancer. The younger age group (< 50years) reported poorer MCS-12 than the older population (age 50years and above). Our study generated findings showing the trends in the HRQoL of breast cancer survivors and compared these to a similar population of women without a history of breast cancer. This paper highlights the importance of focusing on the mental health of young breast cancer survivors to improve their prospects at a good quality of life post-breast cancer diagnosis and treatment.

Age-specific trends in health-related quality of life among US adults: findings from National Health and Nutrition Examination Survey, 2001-2016.

Health-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. NHANES 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 unhealthy, mentally unhealthy, and inactive days to due to physical or mental health in the past 30days. Multiple linear or logistic regression analyses explored trends in HRQoL by age group, adjusting for demographics over time. Analysis revealed increasing fair/poor SRH over time for the entire sample (β = 0.34, 95% CI 0.08, 0.60, p = 0.011). However, age-specific analysis identified a bi-annual increase in fair/poor SRH only among young adults (β = 0.49, 95% CI 0.22, 0.76, p < 0.001) and a decrease among older adults (β = - 0.60, 95% CI - 1.14, - 0.06, p = 0.03). Closer inspection revealed increasing fair/poor SRH increased among young women (β = 0.52, 95% CI 0.11, 0.93, p = 0.013) and young men (β = 0.46, 95% CI 0.04, 0.88, p = 0.03) but decreased among older women (β = - 0.81, 95% CI - 1.59, - 0.03, p = 0.042) over time. Analyses also determined that there was a trend for a decreasing number of physically unhealthy days among young adults (p < 0.001), although no trends were observed for the other HRQoL items. Although there was a significant trend over time for increasing fair/poor SRH when considering the entire sample, this trend was not consistent between age groups or sexes. Given increasing fair/poor SRH among young adults, there is a need to understand and address factors relating to HRQoL among this age group.

The influence of the HEART Camp intervention on physical function, health-related quality of life, depression, anxiety and fatigue in patients with heart failure.

Regular exercise training has beneficial effects on quality of life, physical function, depression and anxiety in individuals with heart failure. Unfortunately, individuals with heart failure have low levels of adherence to exercise. Thus, studies are needed to assess intervention strategies which may enhance clinical outcomes. The aim of this study was to identify the components of the HEART Camp intervention, which contributed to optimizing clinical outcomes. The Heart Failure Exercise and Resistance Training Camp (HEART Camp) was a randomized controlled trial to evaluate the effect of a multicomponent intervention on adherence to exercise (6, 12 and 18 months) compared to an enhanced usual care group. This study assessed various components of the intervention on the secondary outcomes of physical function, health-related quality of life, depression, anxiety, and fatigue. Individuals participating (n=204) in this study were 55.4% men and the average age was 60.4 (11.5) years. A combination of individualized and group-based strategies demonstrated clinical improvements, HEART Camp versus enhanced usual care groups, in physical function, positive trends in health-related quality of life and positive changes in the minimally important differences for depression, anxiety, and fatigue. Individualized coaching by an exercise professional and group-based educational sessions were identified as important components of patient management contributing to improvements in the secondary outcomes of physical function, health-related quality of life, depression, anxiety and fatigue.

Contrasted trends in health-related quality of life across gender, age categories and work status in France, 1995–2016: repeated population-based cross-sectional surveys using the SF-36

BackgroundInterest in monitoring health-related quality of life (HRQoL) in general populations has increased in the past 20 years, reinforced by population ageing and repeated economic crises. This study aims to...

Declining Health-Related Quality of Life in the U.S.

Despite recent declining mortality of the U.S. population from most leading causes, uncertainty exists over trends in health-related quality of life. The 2001-2002 and 2012-2013 National Epidemiologic Surveys on Alcohol and Related Conditions U.S. representative household surveys were analyzed for trends in health-related quality of life (n=79,402). Health-related quality of life was measured with the Short Form-6 Dimension scale derived from the Short Form-12. Changes in mean Short Form-6 Dimension ratings were attributed to changes in economic, social, substance abuse, mental, and medical risk factors. Mean Short Form-6 Dimension ratings decreased from 0.820 (2001-2002) to 0.790 (2012-2013; p<0.0001). In regressions adjusted for age, sex, race/ethnicity, and education, variable proportions of this decline were attributable to medical (21.9%; obesity, cardiac disease, hypertension, arthritis, medical injury), economic (15.6%; financial crisis, job loss), substance use (15.3%; substance use disorder or marijuana use), mental health (13.1%; depression and anxiety disorders), and social (11.2%; partner, neighbor, or coworker problems) risks. In corresponding adjusted models, a larger percentage of the decline in Short Form-6 Dimension ratings of older adults (aged ≥55 years) was attributable to medical (35.3%) than substance use (7.4%) risk factors, whereas the reverse occurred for younger adults (aged 18-24 years; 5.7% and 19.7%) and adults aged 25-44 years (12.7% and 16.3%). Between 2001-2002 and 2012-2013, there was a significant decline in average quality of life ratings of U.S. adults. The decline was partially attributed to increases in several modifiable risk factors, with medical disorders having a larger role than substance use disorders for older adults but the reverse for younger and middle-aged adults.

Health-Related Quality of Life before and after Surgical Resection of Hepatocellular Carcinoma: A Prospective Study

Background and Objectives:This large-scale prospective cohort study of a Taiwan population applied generalized estimating equations (GEEs) to evaluate changing trends in health-related quality of life (HRQoL) and to compare predictors of HRQoL before and after surgical resection of hepatocellular carcinoma (HCC) performed during 2011-2014.Materials and Methods:The Short Form-36 Health Survey (SF-36) and Functional Assessment of Cancer Therapy-Hepatobiliary were used in a preoperative assessment and in 3- and 6-month postoperative assessments of 332 HCC patients.Results:The HRQoL was signficantly (p<0.05) improved at 3 months after surgical resection of HCC and plateaued at 6 months after surgery. Scores for both the SF-36 Physical Component Summary (PCS) and Mental Component Summary (MCS) were significantly higher at the third month after surgery (p<0.05) compared to the preoperative period. Both scores also exceeded the norms after hepatic resection of HCC. However, PCS scores were generally higher than MCS scores throughout the study period. After adjusting for time effects and baseline predictors, GEE approaches revealed the following explanatory variables for HRQoL: time of HRQoL assessment, gender, age, education, coresidence with family, chemotherapy, average length of hospital stay, and preoperative functional status.Conclusions:Hepatic resection significantly increased HRQoL in patients with HCC (p<0.05). However, an evaluation of HRQoL after hepatic resection should consider several factors other than outcomes of the surgery itself. Additionally, patients should be advised that their HRQoL improvement after surgery might depend not only on the success of surgery, but also on their preoperative functional status.

Design and feasibility of integrating personalized PRO dashboards into prostate cancer care.

Patient-reported outcomes (PROs) are a valued source of health information, but prior work focuses largely on data capture without guidance on visual displays that promote effective PRO use in patient-centered care. We engaged patients, providers, and design experts in human-centered design of "PRO dashboards" that illustrate trends in health-related quality of life (HRQOL) reported by patients following prostate cancer treatment. We designed and assessed the feasibility of integrating dashboards into care in 3 steps: (1) capture PRO needs of patients and providers through focus groups and interviews; (2) iteratively build and refine a prototype dashboard; and (3) pilot test dashboards with patients and their provider during follow-up care. Focus groups (n = 60 patients) prioritized needs for dashboards that compared longitudinal trends in patients' HRQOL with "men like me." Of the candidate dashboard designs, 50 patients and 50 providers rated pictographs less helpful than bar charts, line graphs, or tables (P < .001) and preferred bar charts and line graphs most. Given these needs and the design recommendations from our Patient Advisory Board (n = 7) and design experts (n = 7), we built and refined a prototype that charts patients' HRQOL compared with age- and treatment-matched patients in personalized dashboards. Pilot testing dashboard use (n = 12 patients) improved compliance with quality indicators for prostate cancer care (P < .01). PRO dashboards are a promising approach for integrating patient-generated data into prostate cancer care. Informed by human-centered design principles, this work establishes guidance on dashboard content, tailoring, and clinical use that patients and providers find meaningful.

Trends in health-related quality of life (HRQoL) and income over time in older adults with and without cancer: Evidence from the Surveillance, Epidemiology, and End Results–Medicare Health Outcomes Survey (SEER–MHOS) linked database.

9603 Background: The impact of cancer diagnosis (dx) on the financial health and HRQoL of older adults is not well understood. The goal of this study was to explore longitudinal changes in HRQoL an...

Temporal Trends in Health-Related Quality of Life after Stroke: Analysis from the South London Stroke Register 1995–2011

Survival after stroke has dramatically increased in the last two decades as the treatment of stroke has improved. However, time-trend analyses of health-related quality of life in stroke patients covering this time period are still not well investigated. The study aims to examine temporal trends in mental and physical health-related quality of life of stroke survivors between the period of 1995 and 2011. First in a lifetime strokes were registered in the South London Stroke Register between 1995 and 2011. Using the Short Form-12 Health Survey, trends in self-reported health-related quality of life at one-year after stroke were assessed over a 17-year period using linear regression, adjusting for socio-demographics, risk factors, and case-mix variables. Analyses stratifying by age, gender, race-ethnicity, and functional impairment were also performed. The overall trends of mental and physical health-related quality of life scores at one-year after stroke remained relatively unchanged over the period 1995-2011. However, mental health-related quality of life scores significantly improved between the period of 1995-2007 [β = 0·94 (95% CI; 0·15 to 1·74), P = 0·02], after which scores deteriorated [β = -2·02 (-3·82 to -0·22), P = 0·03]. Physical health-related quality of life scores remained stable until 2007, after which scores declined [β = -1·63 (-3·25 to -0·01), P = 0·05]. Despite declining health-related quality of life trends within the general population, stroke survivors' overall health-related quality of life remained unchanged, possibly due to lower expectations of health among stroke survivors. However, in recent years there has been a significant unexplained decline in both physical and mental health-related quality of life, suggesting that despite stroke policy aims to improve health-related quality of life, more needs to be done to target this decline.

Longitudinal Trends in Health-Related Quality of Life in Adults With Cystic Fibrosis

Health-related quality-of-life (HRQOL) measures have been used as patient-reported outcomes in clinical trials in cystic fibrosis (CF), but there are limited data on HRQOL changes over time in adults with CF. The Project on Adult Care in Cystic Fibrosis, a prospective, longitudinal panel study of 333 adults with CF at 10 CF centers in the United States, administered a disease-specific HRQOL measure, the Cystic Fibrosis Questionnaire-Revised (CFQ-R), seven times over 21 months. The CFQ-R assesses both physical and psychosocial domains of health. Growth curve regression models were developed for each CFQ-R domain, adjusting for demographic and clinical characteristics. Between 205 and 303 adults completed surveys (response rate, 70%-93%). Mean age at baseline was 33 years (range, 19-64 years); mean FEV1 % predicted was 59.8% (SD, 22%). Over the 21 months of follow-up, lung function, frequency of pulmonary exacerbations, and nutritional indices were associated with physical CFQ-R domain scores. There were no significant population trends over time in the physical domain scores; however, there were population time trends in three psychosocial domains: treatment burden (+8.9 points/y), emotional functioning (+3.2 points/y), and social functioning (-2.4 points/y). Individual variation in both physical and psychosocial subscales was seen over 21 months. In a longitudinal multicenter population of adults with CF, clinical variables such as FEV1, exacerbation frequency, and weight were correlated with related CFQ-R subscales. For the population as a whole, the physical domains of CFQ-R, such as respiratory symptoms, were stable. In contrast, population changes in several psychosocial domains of CFQ-R suggest that differentiating between the physical and the psychosocial trajectories in health among adults with CF is critical in evaluating patient-reported outcomes.

Trends in Health-Related Quality of Life Among Adolescents in the United States, 2001–2010

Health-related quality of life (HRQOL) measures are often used to track changes in population health, mostly among adults. Prompted by the recent US recession, we assessed trends in adolescent HRQOL by using cross-sectional data from the 2001–2010 National Health and Nutrition Examination Survey. Adolescents’ self-rated health and reported mental health declined significantly, especially among those in low-income families, but their physical health and activity limitation did not change. Because these HRQOL declines occurred at the end of the decade and especially among adolescents from low-income families, we conclude that these declines are consistent with recession effects and warrant further study.

Gesundheitsbezogene Lebensqualität und psychische Gesundheit von Kindern und Jugendlichen in Deutschland: Ergebnisse aus der deutschen HBSC-Studie 2006-2010

With medical advances, acute -disease in childhood and adolescence could be substantially reduced, thus shifting the focus towards chronic and mental health problems. Currently there is a lack of studies on trends in health-related quality of life (HRQoL) and mental well-being and their determinants in the context of children's and adolescents' environment (e. g., family, school). The aim of this paper is to describe the trend in HRQoL in children and adolescents from 2006 to 2010 and to analyse factors associated with HRQoL and mental well-being of children and adolescents.Results are based on the German sample (11-, 13- and 15-year-old school children) of the international WHO Study from the 2006 (n=6 896) and 2010 (n=4 723) surveys. HRQoL was assessed by means of KIDSCREEN-10. The Strengths and Difficulties Questionnaire (SDQ), a screening instrument for mental health problems, was used as an indicator of mental health. Logistic regressions were performed to analyse the effects of covariates on HRQoL as well as on mental health problems.HRQoL remained fairly stable between 2006 and 2010 for both boys and girls. Approximately 85% of the school children report a high or normal HRQoL, whereby girls indicate a lower HRQoL than boys. Overall, 14,3% of the pupils show signs of mental health problems. The model results show that poor communication with parents, spending little time with friends, lack of perceived support from classmates and a negative attitude towards school are negatively associated with mental health.The majority of children and adolescents report a high HRQoL over time. The fact that every 7th 11- to 15-year-old shows signs of mental health problems raises concern and suggests that addressing mental health problems needs to gain more priority in public health measures.