Health-related Quality Of Life In Adults Research Articles

Risk and Protective Factors of Psychosocial Functioning inSurvivors of Childhood Cancer: Results of the DCCSS-LATER Study.

This study examines the association between psychosocial risk and protective factors and a wide range of psychosocial outcomes including emotional, social, cognitive, and physical domains in childhood cancer survivors (CCS). CCS from the Dutch Childhood Cancer Survivor Study (DCCSS)-LATER cohort (diagnosed 1963-2001) part 2 (age≥18years, diagnosed < 18years, ≥ 5years since diagnosis) completed questionnaires on psychosocial risk and protective factors (Benefit and Burden Scale, Illness Cognition Questionnaire, Rosenberg Self-Esteem Scale, and Impact of Cancer Scale), and psychosocial outcomes (Hospital Anxiety and Depression Scale, Self-Rating Scale for Post-Traumatic Stress Disorder, TNO-AZL Questionnaire for Adult Health-Related Quality of Life, and Short Form-36). Associations were assessed with regression analysis, adjusting for attained age, sex, number of health conditions, and time since diagnosis, while correcting for multiple testing (p< 0.004). A total of 1382 CCS participated, all diagnosed ≥ 15years ago. The mean age of participating CCS was 36years, and 51% were female. Perceived benefit and burden, acceptance, and helplessness, self-esteem and social support were associated with the psychosocial outcomes. In the models including all psychosocial factors, most associations with psychosocial outcomes were seen for self-esteem (10×), and perceived burden (9×). Self-esteem (all β≤ 0.47) and perceived burden (all β≤ 0.38) demonstrated strongest associations of medium/large size. Perceptions of childhood cancer, illness cognitions, self-esteem, and social support play a role in explaining psychosocial functioning in CCS, outweighing the influence of socio-demographic and medical variables. Addressing negative perceptions and reducing feelings of helplessness, while promoting acceptance, self-esteem, and social support, could provide intervention targets for CCS who encounter psychosocial challenges.

The impact of clinically relevant health conditions on psychosocial outcomes in survivors of childhood cancer: results of the DCCSS-LATER study.

Investigate the association between presence, number and type of clinically relevant health conditions and a range of psychosocial outcomes (emotional, social, cognitive, physical) in survivors of childhood cancer (CCS). CCS from the Dutch Childhood Cancer Survivor Study (DCCSS)-LATER cohort (diagnosed between 1963-2001, attained age ≥ 18, diagnosed < 18, ≥ 5years since diagnosis) completed a questionnaire on health conditions (2013-2014), and questionnaires on psychosocial outcomes (2017-2020): Hospital Anxiety and Depression Scale, Short form 36, TNO-AZL Questionnaire for Adult Health-Related Quality of Life, and the Self-Rating Scale for Post-Traumatic Stress Disorder. Associations among health conditions and psychosocial outcomes were assessed with regression analysis, adjusting for attained age, sex, and time since diagnosis, and adjusting for multiple testing (p < 0.004). A total of 1437 CCS, mean age 36.3years, 51.1% female, ≥ 15years since diagnosis, completed questionnaires on health and psychosocial outcomes. CCS with a clinically relevant health condition, and those with more conditions had worse emotional, social, and physical outcomes; regression coefficients were small to moderate. CCS with gastro-intestinal conditions, endocrine, nervous systems, eye, or ear conditions, and especially those with secondary malignant neoplasms, reported worse psychosocial functioning; regression coefficients were small/moderate to large. Health care professionals should be aware of the increased risk for psychosocial problems among CCS with health conditions, especially for survivors with secondary malignant neoplasms, gastro-intestinal, endocrine, nervous system, eye, and ear conditions. CCS may benefit from psychological interventions to develop coping strategies to manage health conditions and psychosocial consequences of the cancer trajectory.

Quality of life in adults with food protein-induced enterocolitis syndrome (FPIES)

FPIES infrequently debuts in adulthood. There is limited information about how FPIES could impact on health-related quality of life (HRQL). The goal of this work is to analyze the HRQL in adults with FPIES through the validated food allergy-specific questionnaire for quality of life (FAQLQ-AF).

Relationship between Adult Health-Related Quality of Life and Oral Health Status

Relationship between Adult Health-Related Quality of Life and Oral Health Status

Psychosocial functioning of parents of Dutch long-term survivors of childhood cancer.

To describe health-related quality of life (HRQoL), post-traumatic stress and post-traumatic growth of parents of long-term survivors of childhood cancer (CCS) and study associated factors. Parents of survivors of the Dutch Childhood Cancer Survivor Study LATER cohort below 30years and diagnosed 1986-2001 were invited to complete the TNO-AZL Questionnaire for Adult's HRQoL (e.g., sleep and aggressive emotions), Self-Rating Scale for Post-traumatic Stress Disorder, Post-traumatic Growth Inventory, and Illness Cognition Questionnaire. HRQoL domain scores were compared to references using Mann-Whitney U tests. Correlations between post-traumatic stress, growth and HRQoL were evaluated. Medical characteristics of their child and illness cognitions were studied as associated factors of HRQOL, post-traumatic stress and growth. p<0.05 was considered statistically significant. Parents (n=661 of n=448 survivors, 56% female, mean time since child's diagnosis: 21.3 [SD: 3.3] years) reported better HRQoL in social functioning and aggressive emotions than references (r=.08-0.17). Mothers additionally reported better HRQoL in pain, daily activities, sexuality, vitality, positive and depressive emotions (r=.07-0.14). Post-traumatic stress was symptomatic in 3%, and associated with worse HRQoL (r=-0.27-0.48). Post-traumatic growth was positively associated to post-traumatic stress and better HRQoL (r=0.09-0.12). Cancer recurrence was associated to better HRQoL (β=0.37-0.46). Acceptance illness cognitions were associated to better (β=0.12-0.25), and helplessness to worse outcomes (β=0.14-0.38). HRQoL of parents of young adult survivors of CCS is comparable to references or slightly better. Only a small proportion reports symptomatic post-traumatic stress. Improving acceptance and reducing feelings of helplessness may provide treatment targets for parents with psychosocial problems.

A Systematic Literature Review of Patient-Reported Outcome Instruments Used in Sickle Cell Disease

Introduction: Patients with sickle cell disease (SCD) often have recurrent episodes of acute severe pain (vaso-occlusive crises, VOCs), which result in repeated hospital admissions and use of pharmacological treatments, and can negatively impact patients' health-related quality of life (HRQL). Most SCD randomized clinical trials (RCTs) are designed to evaluate efficacy in relation to changes in the number of VOCs and their impact on HRQL. We conducted a systematic literature review (SLR) to identify patient-reported outcome (PRO) and healthcare resource utilization (HCRU) instruments used in RCTs and real-world studies and to evaluate their psychometric properties with a view to provide recommendations of appropriate PRO endpoints for use in clinical trials for SCD treatments in the United States (US).Methods: An SLR was conducted to search, identify and summarize validated PRO instruments that have been used by patients with SCD in the US and their caregivers. MEDLINE and EMBASE were searched using terms synonymous with “sickle cell disease” and “psychometric properties” of PRO instruments for articles published in English between 1997 and March 2017 focusing on pediatric patients (5-17 years) and their caregivers, and adults (≥18 years). Studies were included if results were based on assessing psychometric properties of PRO instruments and if the studies were interventional or observational in design. Exclusion criteria included studies conducted in non-US populations, reporting on non-validated generic questionnaires or without any psychometric data. Conference abstracts, narrative reviews, letters to the editor, laboratory studies and case reports/series were excluded. The quality of PRO instruments in the included studies was assessed using the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) checklist, a well-established checklist to measure the methodological quality and performance of PRO instruments across a number of domains as reported in psychometric evaluation studies.Results: The SLR identified 504 references for title/abstract screening. Of these, 46 full-text articles were further assessed for inclusion and 19 articles were included. Two additional articles were identified from manual reference checks of relevant SLRs. Thus, a total of 21 US-based studies assessing 10 child and 15 adult PRO instruments in SCD were included in the review. No validated PRO instruments were found that measured caregiver burden in SCD and no validated HCRU instruments for any SCD population were identified. The review of pediatric studies identified the most commonly reported instrument to be the Pediatric Quality of Life Inventory (PedsQL), while most of the adult instruments (9 of 15) focused on evaluating self-efficacy/-esteem and pain in relation to SCD. Only one instrument, the Adult Sickle Cell Quality of Life Measurement (ASCQ-Me), was identified as evaluating HRQL in adults. Out of the 25 PRO instruments reviewed for both children and adults, only 3 out of 10 and 5 out of 15 instruments, respectively, were specifically developed for these age groups with SCD. There were little or no data on validation conducted in SCD development cohorts for most instruments. Additionally, the included studies did not assess minimally important differences in any of the instruments reviewed. In terms of instruments' psychometric properties, most instruments (9 of 15) identified for adult populations had strong internal reliability; however, there was often insufficient information to assess the content validity, construct validity, responsiveness and test-retest reliability of the instruments identified for both child and adult populations.Conclusions: Limited evidence on the psychometric properties of PRO instruments used in patients with SCD was identified. Furthermore, among the instruments reviewed, none was found to sufficiently capture all the PRO aspects of SCD and its complications on patients' HRQL for use as key trial endpoints. Further research should validate, or develop if no instrument is in existence, PRO instruments to assess HRQL of patients with SCD, PRO instruments for caregivers and HCRU instruments. DisclosuresSarri:Evidera: Employment. Bhor:Novartis: Employment, Equity Ownership, Research Funding. Abogunrin:Evidera: Consultancy; Novartis: Research Funding. Farmer:Evidera: Employment; Novartis: Research Funding. Nandal:Novartis: Employment, Equity Ownership, Research Funding. Revicki:Novartis: Consultancy, Research Funding.

Understanding the impact of group therapy on health-related quality of life of people with Aphasia: a scoping review

ABSTRACT Aphasia is a communication disorder, resulting in difficulty with speaking, understanding, reading, and writing. Aphasia has been linked to decreased social networks, depression, and low health-related quality of life (HRQL). Speech-language pathologists provide therapy through various models for adults with aphasia, including group speech and language therapy. This scoping review aimed to identify, summarize, and appraise peer-reviewed texts that consider HRQL in adults with aphasia who are receiving group speech and language therapy. The research questions that guided the review were: What measures were used to capture HRQL outcomes? Does HRQL change as a result of participation in group language treatment? A systematic literature search developed and implemented by a health sciences librarian identified full-text journal articles via electronic searches of five databases. To be included, studies had to explore adults with aphasia, participating in group language therapy, with a HRQL outcome measure. Relevant studies were assessed for methodological quality and level of evidence. Thirteen articles met inclusion criteria, including two randomized control trials, eight case studies, and three qualitative studies. HRQL measures used and type of intervention varied across studies. HRQL measures showed generally positive outcomes of group language therapy, and participants reported improved HRQL after group language therapy. The current evidence is not comprehensive due to the overall lack of high-quality studies and the low level of evidence available. Further well-designed studies would benefit our understanding of how group therapy may improve HRQL for adults with aphasia.

The Burden of Illness of Congenital Adrenal Hyperplasia (CAH) in Adults: Results: of a Structured Literature Review

Objectives: Congenital adrenal hyperplasia (CAH) is a group of rare autosomal-recessive disorders that arise from genetic deficiencies in key enzymes involved in cortisol synthesis. The burden of CAH has never been comprehensively reviewed; this literature review was conducted to summarise the existing burden of illness evidence available for these patients. Methods: A structured, comprehensive literature review was conducted to identify articles describing the burden and treatment landscape of CAH. Literature databases (MEDLINE, Embase, the Cochrane Library and EconLit), websites and conference proceedings were searched. Searches were performed in 2016 and updated in June 2020; eligible articles presented evidence for patients with CAH or paediatric patients with adrenal insufficiency (AI), for ≥1 topic of interest (epidemiology; natural history; clinical characteristics; humanistic, caregiver and economic burden; treatment options; or clinical guidelines). The evidence presented here focusses on the humanistic and economic burden of CAH in adults. Results: A total of 3,711 citations were identified and 336 were included; 84 references reported humanistic or economic burden data relevant to adult patients with CAH. 51 publications were identified reporting patient symptoms, comorbidities and cardiometabolic risk factors; 38 reporting on the impact of CAH on health-related quality of life (HRQL); 5 reporting patient views and 2 reporting economic burden associated with CAH. Compared to the general population, adult patients with CAH were found to be significantly shorter, have poorer bone health, increased levels of obesity, impaired male and female fertility, higher blood pressure and cholesterol levels, have more psychiatric and neurological disorders and have poorer cognitive performance. Adult patients with CAH were also found to have greater insulin resistance and higher levels of type 2 diabetes (T2D). CAH patients are also at risk of adrenal crisis, which contributes to excess mortality. The reported HRQL in adults with CAH varies, with increased impairment observed in more severe forms of CAH, and challenges due to living with a chronic disease impacting HRQL varying according to sex. “Sick day rules” where patients need to double or triple treatment doses, have a significant impact on patients’ HRQL and also have an impact on patients’ resource use, with a UK study reporting that CAH patients will implement these rules 171 times over their lifetime, and be hospitalised for adrenal crises on 11 occasions. CAH was also found to have a significant economic impact, with significantly higher annual healthcare costs compared to matched controls (p=0.007 for patients aged 18–40 years; p<0.001 for patients aged ≥40 years). Conclusions: This comprehensive review highlights that CAH in adults is associated with a significant humanistic and economic burden.

&lt;p&gt;Patient-Reported Outcomes and Economic Burden of Adults with Sickle Cell Disease in the United States: A Systematic Review&lt;/p&gt;

PurposeTo systematically estimate the patient-reported outcomes (PROs) and economic burden of sickle cell disease (SCD) among adults in the United States (US).Patients and MethodsTwo systematic literature reviews (SLRs), one each for the PROs and economic topics, were performed using MEDLINE and Embase to identify observational studies of adults with SCD. Included studies were published between 2007 and 2018 and evaluated health-related quality of life (HRQL), function, healthcare resource utilization (HCRU), or costs. Given the high degree of clinical and methodological heterogeneity, findings were summarized qualitatively.ResultsThe SLRs identified 7 studies evaluating the PROs and 15 studies evaluating the economic burden meeting the pre-specified selection criteria. The PRO evidence showed the prevalence of depression and anxiety to be 21–33% and 7–36%, respectively, in adults with SCD. The mean SF-36 physical summary scores ranged from 33.6 to 59.0 and from 46.3 to 61.5 for the mental summary scores. Overall HRQL for adults with SCD was poor and significantly worse in those with opioid use. Adult SCD patients were found to have varying rates of emergency department (ED) utilization (0.3–3.5 annual ED visits), hospitalizations (0.5–27.9 per patient per year), and/or readmission (12–41%). Key factors associated with significant HCRU were age, dental infection, and SCD-related complications. SCD specialized care settings and SCD intensive management strategy were reported to significantly decrease the number of hospitalizations.ConclusionThis systematic evidence synthesis found that disease burden measured by PROs and economic burden of SCD on adults in the US are substantial despite the availability of approved SCD treatments during 2007–2018. The use of hydroxyurea, optimal management with opioids, and employing intensive treatment strategies may help decrease the overall burden to patients and healthcare systems. Published data on costs associated with SCD are limited and highlight the need for more economic studies to characterize the full burden of the disease.

Improvements in frailty contribute to substantial improvements in quality of life after lung transplantation in patients with cystic fibrosis.

While lung transplantation (LTx) improves health-related quality of life (HRQL) in cystic fibrosis (CF), the determinants of this improvement are unknown. In other populations, frailty-a syndrome of vulnerability to physiologic stressors-is associated with disability and poor HRQL. We hypothesized that improvements in frailty would be associated with improved disability and HRQL in adults with CF undergoing LTx. In a single-center prospective cohort study from 2010 to 2017, assessments of frailty, disability, and HRQL were performed before and at 3- and 6-months after LTx. We assessed frailty by the short physical performance battery (SPPB). We assessed disability with the Lung Transplant Valued Life Activities scale (LT-VLA) and HRQL by the Medical Outcomes Study Short Form Physical and Mental Component Summary scales (SF12-PCS, -MCS), the Airway Questionnaire 20-Revised (AQ20R), and the Euroqol 5D (EQ5D). We tested the association of concurrent changes in frailty and lung function on disability and HRQL by linear mixed-effects models adjusted for sex and body mass index. Among 23 participants with CF, improvements in frailty and lung function were independently associated with improved disability and some HRQL measures. For example, each 1-point improvement in SPPB or 200 mL improvement in FEV1 was associated with improved LT-VLA disability by 0.14 (95%CI: 0.08-0.20) and 0.07 (95%CI: 0.05-0.09) points and improved EQ5D by 0.05 (95%CI: 0.03 to 0.07) and 0.02 (95%CI: 0.01-0.03) points, respectively. Improvement in frailty is a novel determinant of improved disability and HRQL in adults with CF undergoing LTx.

Self-Efficacy and Emotional Stability Buffer Negative Effects of Adverse Childhood Experiences on Young Adult Health-Related Quality of Life

PurposeThe impact of adverse childhood experiences (ACEs) on various health outcomes is a major public health concern. This study aimed to provide a comprehensive overview of direct and indirect effects of ACEs on young adult mental and physical health-related quality of life (HRQoL) and to identify protective factors that could be addressed by public health interventions. MethodsWe used structural equation modeling to investigate associations between ACE exposure and mental and physical HRQoL in 3,704 young adults (44.5% male) who participated at baseline (2003–2006; mean age = 12.2 years, 95% confidence interval = 12.1–12.3) and at the second follow-up (2014–2017; mean age = 25.0 years, 95% confidence interval = 24.9–25.1) of the KiGGS cohort study, a population-based study of children and adolescents in Germany. We investigated the mediating role of protective factors in associations between ACEs and adult HRQoL while controlling for child/adolescent HRQoL. ResultsA substantial proportion of young adults (65.6%) reported an ACE. Emotional abuse, neglect, depression/suicide of a household member, and ACE co-occurrence affected HRQoL negatively. Some of the negative effects of ACEs on HRQoL were attenuated, and cumulative effects from ACE co-occurrence were buffered by protective factors. ConclusionsSelf-efficacy and emotional stability seem to play a key role in buffering the effects of ACEs on mental and physical HRQoL. To reduce the negative impact of ACEs, public health measures should pay additional attention to emotional abuse and promote coping and adaption competencies in children and adolescents with ACE and in general.

Social Determinants of Health Associated With Michigan Residents 50 Years and Older Health-Related Quality of Life and Cardiovascular Health.

Objective: Studies show perceived health-related quality of life (HRQL) is associated with cardiovascular health (CVH) status; however, there is a limited understanding of underlying determinants of the CVH and HRQL of adults ≥50 years. Therefore, this study’s objective was to examine social determinants of health (SDOH) associated with Michigan residents ≥50 years HRQL measures and CVH status. Methods: Michigan-level data was extracted from the 2017 Behavioral Risk Factor Surveillance System to complete the study’s objective. The data were weighted to obtain state-level estimates. Multinomial and binary logistic regression analyses identified SDOH significantly associated with Michiganders ≥50 years CVH status and HRQL measures. Results: The sample consisted of 10,889 participants. Compared to residents with a moderate CVH and mental health status, residents who reported unable to visit a doctor due to costs were two times more likely than those who were able to visit a provider to have a non-ideal CVH and mental health status (OR = 2.65; 95% CI: 1.39–5.07). Discussion: SDOH were significantly associated with non-ideal CVH and HRQL measures. Interventions that seek to address the CVH and perceive HRQL of residents ≥50 years should also address their underlying SDOH. Research should be performed to determine the generalizability of these findings.

Health related quality of life in adults after burn injuries: A systematic review.

ObjectivesMeasurement of health-related quality of life (HRQL) is essential to qualify the subjective burden of burns in survivors. We performed a systematic review of HRQL studies in adult burn patients to evaluate study design, instruments used, methodological quality, and recovery patterns.MethodsA systematic review was performed. Relevant databases were searched from the earliest record until October 2016. Studies examining HRQL in adults after burn injuries were included. Risk of bias was scored using the Quality in Prognostic Studies tool.ResultsTwenty different HRQL instruments were used among the 94 included studies. The Burn Specific Health Scale–Brief (BSHS-B) (46%), the Short Form–36 (SF-36) (42%) and the EuroQol questionnaire (EQ-5D) (9%) were most often applied. Most domains, both mentally and physically orientated, were affected shortly after burns but improved over time. The lowest scores were reported for the domains ‘work’ and ‘heat sensitivity’ (BSHS-B), ‘bodily pain’, ‘physical role limitations’ (SF-36), and ‘pain/discomfort’ (EQ-5D) in the short-term and for ‘work’ and ‘heat sensitivity’, ‘emotional functioning’ (SF-36), ‘physical functioning’ and ‘pain/discomfort’ in the long-term. Risk of bias was generally low in outcome measurement and high in study attrition.ConclusionConsensus on preferred validated methodologies of HRQL measurement in burn patients would facilitate comparability across studies, resulting in improved insights in recovery patterns and better estimates of HRQL after burns. We recommend to develop a guideline on the measurement of HRQL in burns. Five domains representing a variety of topics had low scores in the long-term and require special attention in the aftermath of burns.

Stigma and Health-Related Quality of Life in Sexual Minorities

Stigma against sexual minorities is well documented, but its long-term consequences for health-related quality of life (HRQL) are unknown. This study examined stigma-related predictors of sexual orientation disparities in HRQL and their contribution to young adult HRQL disparities. In 2013, participants (N=7,304, aged 18-31 years) reported sexual orientation (completely heterosexual [CH], mostly heterosexual, bisexual, and lesbian/gay). The EQ5D-5L, preference weighted for the U.S. population, was used to assess HRQL (range, -0.109 [worse than dead] to 1 [full health]). In prior waves conducted during adolescence, participants reported past-year bullying victimization (range, 1 [never] to 5 [several times/week]) and subjective social status (SSS) in their school (range, 1 [top] to 10 [bottom]). Analyses conducted in 2016 used longitudinal, multivariable linear and logistic regression to assess the contribution of bullying victimization and SSS in adolescence to sexual orientation disparities in HRQL in young adulthood, controlling for confounders and stratified by gender. Compared with CHs, both female and male sexual minorities reported more bullying victimization and lower SSS in adolescence and lower HRQL in young adulthood (HRQL score among women: mostly heterosexual, 0.878; bisexual, 0.839; lesbian, 0.848; CH, 0.913; HRQL score among men: mostly heterosexual, 0.877; bisexual, 0.882; gay, 0.890; CH, 0.925; all p-values <0.05). When bullying and SSS were added into multivariable models, orientation group effect estimates were attenuated substantially, suggesting bullying and lower SSS in adolescence partly explained HRQL disparities in young adulthood. Stigma-related experiences in adolescence may have lasting adverse effects on sexual minority health in adulthood.

Health literacy and health-related quality of life in adults with type 2 diabetes: a longitudinal study

To examine the association of health literacy (HL) with changes in health-related quality of life (HRQL) among patients with type 2 diabetes. Data from a cohort study of type 2 diabetes patients were used. HL was assessed using 3 previously validated screening questions and HRQL using the EQ-5D-5L and SF-12 [physical and mental composite summary scores (PCS, MCS)]. The associations of baseline HL with changes in EQ-5D, PCS, and MCS scores over 1year and with directions of changes (no change; declined; improved) were examined. Missing data were handled with multiple imputation and sensitivity analyses. Average age of participants (N=1948) was 64.6±10.9years, 45% were female, and 12.6% had inadequate HL. Participants had mean decrements of 0.01 in EQ-5D, 1.0 in PCS, and 1.2 in MCS over 1year. In adjusted analysis, HL was not associated with changes in EQ-5D over 1year (β=0.01, P=0.146); however, patients with adequate HL had 2.1 points greater increase in PCS (P<0.001) and 3.1 points in MCS (P<0.001) compared to those with inadequate HL. Patients with adequate HL were less likely to have a decline in EQ-5D (RR 0.66; 95% CI 0.44, 0.98), PCS (RR 0.51; 95% CI 0.34, 0.76), and MCS (RR 0.49; 95% CI 0.33, 0.72) compared to those with inadequate HL. Patients with adequate HL were more likely to have an improvement in MCS compared to those with inadequate HL (RR 1.78; 95% CI 1.04, 3.04); such associations were not observed for PCS or EQ-5D. All results were robust in sensitivity analyses. Inadequate HL was independently associated with worsening HRQL in adults with type 2 diabetes, particularly in the mental health domain.

Adverse childhood experiences and health-related quality of life in adulthood: revelations from a community needs assessment.

BackgroundAdverse childhood experiences (ACE) have been previously linked to quality of life, health conditions, and life expectancy in adulthood. Less is known about the potential mechanisms which mediate these associations. This study examined how ACE influences adult health-related quality of life (HRQoL) in a low-income community in Florida.MethodsA community-based participatory needs assessment was conducted from November 2013 to March 2014 with 201 residents of Tampa, Florida, USA. HRQoL was measured by an excessive number of unhealthy days experienced during the previous 30-day window. Mediation analyses for dichotomous outcomes were conducted with logistic regression. Bootstrapped confidence intervals were generated for both total and specific indirect effects.ResultsMost participants reported ‘good to excellent health’ (76 %) and about a fourth reported ‘fair to poor health’ (24 %). The mean of total unhealthy days was 9 days per month (SD ±10.5). Controlling for demographic and neighborhood covariates, excessive unhealthy days was associated with ACE (AOR = 1.23; 95 % CI: 1.06, 1.43), perceived stress (AOR = 1.07; 95 % CI: 1.03, 1.10), and sleep disturbance (AOR = 8.86; 3.61, 21.77). Mediated effects were significant for stress (β = 0.08) and sleep disturbances (β = 0.11) as they related to the relationship between ACE and excessive unhealthy days.ConclusionACE is linked to adult HRQoL. Stress and sleep disturbances may represent later consequences of childhood adversity that modulate adult quality of life.Electronic supplementary materialThe online version of this article (doi:10.1186/s12955-015-0323-4) contains supplementary material, which is available to authorized users.

Adverse childhood events: incarceration of household members and health-related quality of life in adulthood.

Incarceration of a household member has been associated with adverse outcomes for child well-being. We assessed the association between childhood exposure to the incarceration of a household member and adult health-related quality of life (HRQOL) in the 2009/2010 Behavioral Risk Factor Surveillance System controlling for age, race/ethnicity, education, and additional adverse childhood experiences. Adults who lived in childhood with an incarcerated household member had higher risk of poor HRQOL compared with adults who had not (adjusted relative risk [ARR] 1.18; 95% CI 1.07, 1.31). Among Black adults the association was strongest with the physical health component of HRQOL (ARR 1.58 [95% CI 1.18, 2.12]); among White adults, the association was strongest with the mental health component of HRQOL (ARR 1.29, [95% CI 1.07-1.54]). Living with an incarcerated household member during childhood is associated with higher risk of poor HRQOL during adulthood, suggesting that the collateral damages of incarceration for children are long-term.

Quality of Life Depends on the Drinking Pattern in Alcohol-Dependent Patients

In patients with alcohol dependence, health-related quality of life (QOL) is reduced compared with that of a normal healthy population. The objective of the current analysis was to describe the evolution of health-related QOL in adults with alcohol dependence during a 24-month period after initial assessment for alcohol-related treatment in a routine practice setting, and its relation to drinking pattern which was evaluated across clusters based on the predominant pattern of alcohol use, set against the influence of baseline variables The Medical Outcomes Study 36-Item Short-Form Survey (MOS-SF-36) was used to measure QOL at baseline and quarterly for 2 years among participants in CONTROL, a prospective observational study of patients initiating treatment for alcohol dependence. The sample consisted of 160 adults with alcohol dependence (65.6% males) with a mean (SD) age of 45.6 (12.0) years. Alcohol use data were collected using TimeLine Follow-Back. Based on the participant's reported alcohol use, three clusters were identified: 52 (32.5%) mostly abstainers, 64 (40.0%) mostly moderate drinkers and 44 (27.5%) mostly heavy drinkers. Mixed-effect linear regression analysis was used to identify factors that were potentially associated with the mental and physical summary MOS-SF-36 scores at each time point. The mean (SD) MOS-SF-36 mental component summary score (range 0-100, norm 50) was 35.7 (13.6) at baseline [mostly abstainers: 40.4 (14.6); mostly moderate drinkers 35.6 (12.4); mostly heavy drinkers 30.1 (12.1)]. The score improved to 43.1 (13.4) at 3 months [mostly abstainers: 47.4 (12.3); mostly moderate drinkers 44.2 (12.7); mostly heavy drinkers 35.1 (12.9)], to 47.3 (11.4) at 12 months [mostly abstainers: 51.7 (9.7); mostly moderate drinkers 44.8 (11.9); mostly heavy drinkers 44.1 (11.3)], and to 46.6 (11.1) at 24 months [mostly abstainers: 49.2 (11.6); mostly moderate drinkers 45.7 (11.9); mostly heavy drinkers 43.7 (8.8)]. Mixed-effect linear regression multivariate analyses indicated that there was a significant association between a lower 2-year follow-up MOS-SF-36 mental score and being a mostly heavy drinker (-6.97, P < 0.001) or mostly moderate drinker (-3.34 points, P = 0.018) [compared to mostly abstainers], being female (-3.73, P = 0.004), and having a Beck Inventory scale score ≥8 (-6.54, P < 0.001), at baseline. The mean (SD) MOS-SF-36 physical component summary score was 48.8 (10.6) at baseline, remained stable over the follow-up and did not differ across the three clusters. Mixed-effect linear regression univariate analyses found that the average 2-year follow-up MOS-SF-36 physical score was increased (compared with mostly abstainers) in mostly heavy drinkers (+4.44, P = 0.007); no other variables tested influenced the MOS-SF-36 physical score. Among individuals with alcohol dependence, a rapid improvement was seen in the mental dimension of QOL following treatment initiation, which was maintained during 24 months. Improvement was associated with the pattern of alcohol use, becoming close to the general population norm in patients classified as mostly abstainers, improving substantially in mostly moderate drinkers and improving only slightly in mostly heavy drinkers. The physical dimension of QOL was generally in the normal range but was not associated with drinking patterns.

Health related quality of life and perceptions of child vulnerability among parents of children with a history of Kawasaki disease

Kawasaki disease (KD) is an acute paediatric vasculitis. The psychosocial consequences of this sudden illness for parents are unknown. This study aimed to evaluate health related quality of life (HRQOL) and parental perceptions of child vulnerability (PPCV) in parents of children with KD, and to identify variables associated with PPCV. This cross-sectional study included 288 parents (83% mothers) of KD patients (mean age 8.7years). HRQOL was assessed using the TNO-AZL Questionnaire for Adult's HRQOL (TAAQOL) and PPCV using the Child Vulnerability Scale (CVS). Scores of KD parents were compared with reference groups of Dutch parents. Logistic regression analyses were performed to examine associated variables. The HRQOL of KD parents was comparable to the HRQOL of parents of healthy children. However, KD parents showed significantly higher PPCV, regarding both the median CVS total score and the percentage in the clinical range. No differences were found in CVS outcomes between KD parents and parents of a chronically ill child. None of the studied parental, child and disease characteristics were significantly associated with PPCV. Parents perceived their KD child more vulnerable to illness than healthy children, while in reality the majority had fully recovered from KD.

Validity of the Neurology Quality-of-Life (Neuro-QoL) measurement system in adult epilepsy

Epilepsy is a chronic neurological disorder that results in recurring seizures and can have a significant adverse effect on health-related quality of life (HRQL). The Neuro-QoL measurement initiative is an NINDS-funded system of patient-reported outcome measures for neurology clinical research, which was designed to provide a precise and standardized way to measure HRQL in epilepsy and other neurological disorders. Using mixed-method and item response theory-based approaches, we developed generic item banks and targeted scales for adults and children with major neurological disorders. This paper provides empirical results from a clinical validation study with a sample of adults diagnosed with epilepsy. One hundred twenty-one people diagnosed with epilepsy participated, the majority of which were male (62%) and Caucasian (95%), with a mean age of 47.3 (SD=16.9). Baseline assessments included Neuro-QoL short forms and general and external validity measures. The Neuro-QoL short forms that are not typically found in other epilepsy-specific HRQL instruments include Stigma, Sleep Disturbance, Emotional and Behavioral Dyscontrol, and Positive Affect and Well-Being. Neurology Quality-of-Life short forms demonstrated adequate reliability (internal consistency range=.86–.96; test–retest range=.57–.89). Pearson correlations (p<.01) between Neuro-QoL forms of emotional distress (anxiety, depression, stigma) and the QOLIE-31 Emotional Well-Being subscale were in the moderate-to-strong range (r's=.66, .71 and .53, respectively), as were relations with the PROMIS Global Mental Health subscale (r's=.59, .74 and .52, respectively). Moderate correlations were observed between Neuro-QoL Social Role Performance and Satisfaction and the QOLIE-31 Social Function (r's=.58 and .52, respectively). In measuring aspects of physical function, the Neuro-QoL Mobility and Upper Extremity forms demonstrated moderate associations with the PROMIS Global Physical Function subscale (r's=.60 and .61, respectively). Neuro-QoL measures of perceived cognitive function (executive function and general concerns) produced moderate-to-strong correlations with the QOLIE-31 Cognition subscale (r's=.65 and .75, respectively) and moderate relations with the Liverpool Adverse Events Profile (r's=.51 and .69, respectively). Finally, the Neuro-QoL Fatigue measure demonstrated moderate associations with the QOLIE-31 Energy/Fatigue subscale (r=−.65), Liverpool Adverse Events Profile (r=.69), and the Liverpool Seizure Severity Scale (r=.50). Five Neuro-QoL short forms demonstrated statistically significant responsiveness to change at 5–7months, including Fatigue, Sleep Disturbance, Depression, Positive Affect and Well-Being, and Emotional and Behavioral Dyscontrol. Overall, Neuro-QoL instruments showed good evidence for internal consistency, test–retest reliability, convergent validity, and responsiveness to change over several months. These results support the validity of Neuro-QoL to measure HRQL in adults with epilepsy.