Health-related Quality Of Life Deficits Research Articles

Fatores associados à qualidade de vida de mulheres a partir de 50 anos com HIV/AIDS

OBJETIVO: Identificar fatores associados à qualidade de vida relacionada à saúde (QVRS) de mulheres com síndrome da imunodeficiência adquirida (AIDS).MÉTODOS: Estudo correlacional, realizado nos Serviços de Assistência Especializada (SAEs) em doenças sexualmente transmissíveis (DST)/AIDS das regiões norte e leste de São Paulo/SP. A amostra foi constituída por 200 mulheres. Os dados foram coletados com uso dos instrumentos: caracterização sociodemográfica e clínica, Escala de Autoestima de Rosenberg (EAER), Escala de Esperança de Herth (EEH) e HIV/AIDS-Targeted Quality of Life Instrument HAT-QoL; e foram analisados por estatística descritiva e regressão logística binária multivariada.RESULTADOS: Houve maior déficit da QVRS nos domínios Preocupações com o sigilo (30,65±30,22) e Preocupações financeiras (35,50±35,97), e melhor pontuação em Confiança no profissional (79,79±21,27) e Preocupações com a medicação (76,49±21,06). Maior renda per capita mensal, apresentar CD4 acima de 200 células/mm3, fazer uso de medicamentos antirretrovirais (ARV), maior tempo de diagnóstico de HIV/AIDS, não ter companheiro, possuir de boa a excelente percepção do estado de saúde e maior nível de esperança e de autoestima foram fatores associados.CONCLUSÕES: Mulheres a partir de 50 anos com HIV/AIDS apresentam pior QVRS nos aspectos Preocupações com o sigilo e Preocupações financeiras e melhor na Confiança no profissional e nas Preocupações com a medicação. Ter maior renda per capita mensal, apresentar CD4 acima de 200 células/mm3, fazer uso de medicamentos ARV, ter maior tempo de diagnóstico, não ter companheiro fixo, possuir de boa para excelente percepção do estado de saúde e maior nível de esperança e de autoestima são fatores preditores de melhor QVRS na amostra do presente estudo. Os achados vão ao encontro de pesquisas realizadas com mulheres a partir de 50 anos com HIV/AIDS, com exceção da variável não ter companheiro fixo.

Age-specific health-related quality of life in long-term and very long-term colorectal cancer survivors versus population controls – a population-based study

Background: Previous research suggests an age differential in health-related quality of life (HRQOL) among long-term (5–10 years post-diagnosis, LTS) colorectal cancer (CRC) survivors. Few studies have specifically addressed the association of age differentials with HRQOL for very long-term CRC survivors (>10 years post-diagnosis, VLTS) and non-cancer population controls. We aimed to assess possible deficits in HRQOL of disease-free CRC-LTS and CRC-VLTS in comparison with non-cancer population controls, and whether the observed pattern varies by age and time since diagnosis.Methods: We used data from the CAncEr Survivorship - A multi-Regional (CAESAR+) study in collaboration with five population-based German cancer registries. HRQOL from controls was accessed from the Lebensqualität in DEeutschland (LinDE) study. All respondents completed the European Organization for Research and Treatment of Cancer Quality of Life Core-30 questionnaire. We calculated least square means of HRQOL scores. Analyses were adjusted for age, sex, and education, where appropriate.Results: The sample included 862 CRC-LTS, 400 CRC-VLTS and 1689 controls. CRC survivors reported overall good HRQOL but significantly poorer social functioning and more problems with dyspnea, constipation, diarrhea and finances than controls. When stratified by age, deficits in functioning and global health, and more problems with symptoms and finances were noted mainly among younger CRC survivors. Further stratification by time since diagnosis showed that similar deficits in HRQOL and symptoms were noted mainly among the younger CRC-LTS group when compared with controls. Generally, CRC-VLTS reported comparable HRQOL to controls. An exception was noted for diarrhea, whereby CRC survivors, regardless of age and time since diagnosis, reported significantly more problems with this symptom than controls.Conclusions: In comparison with non-cancer controls, disease-free CRC survivors reported overall good HRQOL but experience persistent specific detriments in HRQOL many years after diagnosis. In age stratified analyses, HRQOL deficits were noted mainly among younger CRC-LTS.

Health-related quality of life loss associated with first-time stroke.

ObjectivesThis study aimed to quantify health-related quality of life (HRQoL) loss associated with first episode of stroke by comparing patient-reported HRQoL before and after stroke onset. The impact of stroke in local population was also evaluated by comparing the pre- and post-stroke HRQoL with that of the general population.MethodsThe HRQoL of stroke survivors was assessed with the EQ-5D-3L index score at recruitment, for recalled pre-stroke HRQoL, and at 3 and 12 month post-stroke. Change in HRQoL from pre-stroke to 3 and 12 month was self-reported by 285 and 238 patients, respectively. Mean EQ index score at each time point (baseline: 464 patients; 3 month post-stroke: 306 patients; 12 month post-stroke: 258 patients) was compared with published population norms for EQ-5D-3L.ResultsThere was a significant decrease in HRQoL at 3 (0.25) and 12 month (0.09) post-stroke when compared to the retrospectively recalled patients’ mean pre-stroke HRQoL level (0.87). The reduction at 3 month was associated with the reduction in all EQ-5D-3L health dimensions; reductions remaining at 12 month were limited to dimensions of mobility, self-care, usual activities, and anxiety/depression. Stroke patients had a lower mean EQ index than the general population by 0.07 points pre-stroke (0.87 vs. 0.94), 0.33 points at 3 month (0.61 vs. 0.94) and 0.18 points at 12 month (0.76 vs. 0.94) post-stroke.ConclusionsStroke has a substantial impact on HRQoL in Singapore, especially in the first three months post-stroke. Compared to the general population, stroke survivors have lower HRQoL even before stroke onset. This pre-stroke deficit in HRQoL should be taken into account when quantifying health burden of stroke or setting goals for stroke rehabilitation.

Patient-Reported Outcomes in Systemic Light-Chain Amyloidosis

Background: Patients with systemic light-chain (AL) amyloidosis have a high symptom burden which can negatively impact their health-related quality of life (HRQoL). However, there is a lack of data on patient-reported outcomes (PROs) in this population in the current era of effective plasma cell directed therapies. The primary objectives of our study were to assess baseline HRQoL using FACT-G (Functional Assessment of Cancer Therapy-General) and PROMIS-GH (Patient Reported Outcomes Measurement Information System-Global Health), evaluate the degree of correlation between FACT-G and PROMIS-GH, and compare HRQoL by hematologic response to first-line therapy in systemic AL amyloidosis.Method: This was an observational study using the Cleveland Clinic Knowledge Program database, which contains HRQoL data captured at outpatient visits. FACT-G was administered every 90 days since its implementation on September 2012. PROMIS-GH was implemented in October 2015, initially administered every 30 days and subsequently every 90 days since July 2017.Results: A total of 81 patients with systemic AL amyloidosis diagnosed between September 2012 and December 2017 and ≥1 HRQoL measurement were included in our analysis. The median age at diagnosis was 64 years. Cardiac involvement at diagnosis was present in 49% of patients. The most common induction therapy was Bortezomib-Cyclophosphamide-Dexamethasone (86%). Autologous stem cell transplantation was performed in 38% of patients.Data on HRQoL at baseline (≤2 months from diagnosis) using FACT-G was available for 43 patients. The mean FACT-G total score at baseline was 74 (standard deviation [S.D.] ±15). In comparison, the mean FACT-G total score for general US population is 80.1 (±18.1) and that of US cancer patients is 79.3 (±17.0) [Normative data from Pearman et al; Cancer. 2014]. Maximal HRQoL deficit was seen in the functional well-being (FWB) domain of FACT-G, with the mean score being >0.5 S.D. below that of the general population (Table 1). Data on HRQoL at baseline using PROMIS-GH was available for 18 patients. There was a significant deficit in global physical health (GPH) compared to the general population, with a mean T-score of 37.7 (±7.8) [Mean T-score in general US population being 50±10]. The mean T-score for global mental health (GMH) was 44.4 (±6.7).A total of 72 patients had 128 outpatient visits where FACT-G and PROMIS-GH were captured concurrently (range, 1-4 visits per patient). Using Cohen's criterion, GPH domain of PROMIS-GH had a large and statistically significant correlation with FACT-G total (r=0.66), physical well being (PWB) (r=0.77) and FWB (r=0.66) scores. PROMIS GMH domain also had a strong and statistically significant correlation with FACT-G total (r=0.73), PWB (r=0.60), emotional well-being (EWB) (r=0.64) and FWB (r=0.73) scores. The scatterplots for correlation between PROMIS-GH domains and FACT-G total score is shown in Figure I.At follow-up, a total of 50 patients had data on best hematologic response and HRQoL assessment. Patients achieving a complete response (CR) to first-line therapy had a significantly superior FACT-G score at all domains compared to those with less than CR or no response. Maximal benefit in complete responders was noted in the FWB domain of FACT-G (Mean score ≥2 S.D. higher than patients with less than CR or no response; P=0.002).Conclusion: Patients with AL amyloidosis have a worse HRQoL at diagnosis compared to US cancer and general adult population. Deficit in HRQoL was most prominent in the FWB domain of FACT-G and GPH domain of PROMIS-GH. Most domains of FACT-G and PROMIS-GH had strong and significant correlation. Patients achieving a CR to first-line therapy had significantly superior HRQoL at all FACT-G domains. Clinical trials in AL amyloidosis should include patient-reported HRQoL as a key endpoint and focus on the domains of physical health and functioning to assess meaningful benefit of novel therapies. Psychometric validation of FACT-G and PROMIS-GH in AL amyloidosis would be helpful in generating robust PRO data in future studies. DisclosuresMajhail:Anthem, Inc.: Consultancy; Incyte: Honoraria; Atara: Honoraria.

Sexual health and health-related quality of life among women with pulmonary arterial hypertension.

Pulmonary arterial hypertension (PAH) is characterized by progressive limitations in physical activity and health-related quality of life (HRQoL). HRQoL deficits may extend beyond the traditional domains of physical activity, psychological health, and emotional wellbeing to sexual health and function. Sexual HRQoL has not been studied in PAH, nor has the impact of PAH therapies themselves on sexual health and intimacy. In this initial investigation, we sought to explore HRQoL among women diagnosed with PAH and to determine if PAH treatment type (intravenous or subcutaneous prostanoids versus oral medications) was associated with levels of self-reported HRQoL assessed by validated measures for PAH-specific, general, and sexual HRQoL. We administered the emPHasis-10, Short Form (SF)-36, Female Sexual Dysfunction Scale-Revised (FSDS-R), and the Arizona Sexual Experience Scale (ASEX) to 35 women with self-reported World Health Organization Group 1 PAH at the 2016 Pulmonary Hypertension Association International Conference and Scientific Sessions. HRQoL instruments demonstrated excellent internal reliability. Women with PAH had high levels of sexual distress captured with the FSDS-R scale. The FSDS-R (but not ASEX) was significantly correlated to emPHasis-10 (r = 0.64, p < 0.01) and most SF-36 domains (r = − 0.36 to − 0.64, p < 0.05). Participants treated with intravenous or subcutaneous prostanoids had higher (worse) FSDS-R scores than those on oral therapies while ASEX, emPHasis-10, and SF-36 scores were similar across treatment types. Sexual HRQoL may impact overall quality of life in PAH and specific assessment of sexual health and functioning within intimate relationships may detect deficits in wellbeing not addressed by established HRQoL metrics. Further study to address all aspects of HRQoL in PAH is required.

Health Related Quality of Life and Neurocognitive Outcomes in the First Year after Pediatric Acute Liver Failure

To determine health-related quality of life (HRQoL) and neurocognitive impairment in survivors of pediatric acute liver failure (PALF). A longitudinal prospective study was conducted. At 6 and 12 months after PALF presentation, surveys of HRQoL were completed for 2- to 19-year-olds and executive functioning for ages 2-16 years. At 12 months, patients 3-16 years of age completed neurocognitive testing. HRQoL scores were compared with a healthy, matched sample. Neurocognitive scores were compared with norms; executive functioning scores were examined categorically. A total of 52 parent-report HRQoL surveys were completed at 6 months, 48 at 12 months; 25 patients completed neurocognitive testing. The median age at 6 months was 7.9 years (range 3.5-15.0), and final diagnosis was indeterminate for 46.2% (n = 24). Self and parent-report on Pediatric Quality of Life Inventory Generic and Multidimensional Fatigue scales fell below the healthy sample at 6 months and 12 months (almost all P < .001). Children reported lower mean scores on cognitive fatigue at 12 months (60.91 ± 22.99) compared with 6 months (73.61 ± 27.49, P = .006) . The distribution of Behavior Rating Inventory of Executive Function scores was shifted downward on parent-report (preschool) for all indices at 6 months (n = 14, P ≤ .003); Global Executive Composite and Emergent Metacognition at 12 months (n = 10, P = .03). Visual Motor Integration (VMI-6) Copying (mean = 90.3 ± 13.8, P = .0002) and VMI-6 Motor Coordination (mean = 85.1 ± 15.2 P = .0002) fell below norms, but full scale IQ (Wechsler Scales) and Attention (Conners' Continuous Performance Test) did not. Survivors of PALF appear to show deficits in motor skills, executive functioning, HRQoL, and evidence for worsening cognitive fatigue from 6 to 12 months following PALF presentation.

Health-related quality of life of people with multimorbidity at a community-based, interprofessional student-assisted clinic: Implications for assessment and intervention.

Objective This study examined the relationship between the number of comorbidities and health-related quality of life (HRQoL) and between select physical conditions and HRQoL. Differences in HRQoL in comparison to a normative sample were also examined. Method A cross-sectional study among people with multimorbidity ( n = 401) attending a community-based, interdisciplinary health clinic was conducted. HRQoL was measured using the eight dimensions of the SF-36. Multiple linear regression and t-tests were used to analyse the data. Results A downward trend in HRQoL continued from 2 to 14 concurrent comorbidities. Patients with a higher number of comorbidities reported greater deficits in HRQoL, when age, gender, education and perceived social support were controlled for (beta = -0.11 to -0.31). The impact of the number of comorbidities was greatest for the bodily pain dimension of the SF-36 (beta = -0.31). Deficits were greatest for people with gastrointestinal conditions and back pain or sciatica. Moderate to large deficits in HRQoL compared to a normative population were found (Cohen's d = 0.54-1.16). Discussion Understanding associations between the number and type of physical comorbidities and HRQoL may assist clinical services to design broad but targeted interventions to optimize HRQoL in this group of people.

Functional status and quality of life among breast cancer survivors with heart failure: results of the Medicare Health Outcomes Survey.

The purpose of this population-based study was to examine health-related quality of life (HRQOL) and functional status among breast cancer survivors with heart failure. We examined Medicare Health Outcomes Survey data from women aged 65 and older diagnosed with breast cancer in the past 5years. Surveys were linked to Surveillance, Epidemiology, and End Results cancer registries. Each woman identified with self-reported heart failure (n=239) was matched to controls without heart failure (n=685) using propensity scores. The Short Form-36/Veterans Rand-12 measured eight domains of HRQOL. Functional status impairment was measured by limitations in six activities of daily living (ADLs). Linear models estimated associations between heart failure status and HRQOL. Logistic regression models estimated odds ratios for associations between heart failure and ADL impairment. We examined associations for the total study population and subgroups stratified by cancer stage. Among all study participants, heart failure was associated with significant deficits in every HRQOL domain and impairment in all ADLs (p<0.01, ORs ranged from 1.74 to 2.47). After stratification by cancer stage, heart failure was associated with physical HRQOL deficits across all cancer stages (physical function, vitality, general health) and mental HRQOL deficits only in women with stage I/II cancer (role-emotional, social function). Women with early stage cancer experienced the greatest HRQOL deficits associated with heart failure. Heart failure in breast cancer survivors is associated with substantial HRQOL deficits and functional status impairment, particularly in early stage cancer. Tailored interventions are needed to improve physical function and mental wellbeing in this high-risk population.

Burden of AL Amyloidosis on Health-Related Quality of Life in Clinic-Based, Community-Based, and Trial-Based Studies

Introduction: Light chain (AL) amyloidosis is a rare disease characterized by misfolded amyloid protein deposits in tissues and vital organs which may lead to organ failure, disability, and death. Little is known about the burden of AL amyloidosis on health-related quality of life (HRQoL) - particularly whether patients in different types of studies experience the same degree and type of burden or whether there are unique differences.The objective of this study is to compare the HRQoL profile of patients with AL amyloidosis from clinic-, community-, and clinical trial-based samples to a general population (GP) sample and other benchmarks from more commonly known diseases.MethodsSampleData were drawn from three different samples of AL amyloidosis patients:1. A clinic-based sample of AL amyloidosis patients seen at the Amyloidosis Center at Boston University between 1994 and 2014 who completed the HRQoL survey within 30 days of their initial evaluation (n=1,438)2. A community-based sample of patients who completed a cross-sectional online survey in the Fall of 2015 (n=341)3. A trial-based sample of treatment naïve patients with cardiac involvement who completed the HRQoL survey during baseline data collection of the VITAL Amyloidosis Study, a Phase 3 randomized control trial (RCT) of NEOD001 (clinical trials.gov ID: NCT02312206; n=85)MeasuresAll three studies assessed HRQoL using the SF-36® Health Survey (SF-36). The SF-36v1 was administered to the clinic-based sample and the SF-36v2 was administered to the community- and trial-based samples. The SF-36 measures eight domain scales (physical functioning (PF), role limitations due to physical health problems (RP), bodily pain (BP), general health (GH), vitality (VT), social functioning (SF), role limitations due to emotional health problems (RE), and mental health (MH)) and two component summary measures: physical (PCS) and mental (MCS).AnalysisAnalysis of variance was used to compare the norm-based SF-36 scores from patients with AL amyloidosis to that from samples representing a GP norm. The GP data were adjusted to the age and gender distribution of the patient samples using separate ordinary least-squares regression models, with each SF-36 scale or summary score as a dependent variable. Using the same method, mean SF-36 scales and summary scores in the three AL amyloidosis patient samples were compared to the mean SF-36 scores in other disease populations, including congestive heart failure (CHF) and kidney disease (KD). Established minimally important differences (MIDs) were used to determine whether deficits in HRQoL were clinically meaningful, as well as statistically significant.Results: Differences between AL amyloidosis patients’ SF-36 scores and those of the GP are presented in Table 1 by sample. Relative to the GP, patients with AL amyloidosis exhibited broad deficits in HRQoL, particularly related to physical well-being. Deficits were more prominent for PCS where the differences between the GP scores and the scores observed in all three AL amyloidosis samples were both statistically significant and clinically meaningful (p < 0.001 and D ≥ 2.0 points for all).Differing patterns of relative burden emerged when AL amyloidosis samples were compared to other common disease benchmarks:· As compared to the CHF benchmarks, scores for PCS among the community-based sample were statistically and clinically better (p < 0.001 and D=4.5); whereas, PCS scores were significantly worse among the trial-based sample (p < 0.01 and D=-8.9).· Relative to KD benchmarks, the trial-based, treatment naïve sample reported significant deficits across many scores that were comparable in the community-based sample, including RP, VT, and PCS.Conclusions: Regardless of the data source, patients with AL amyloidosis exhibited significant and clinically meaningful deficits in HRQoL compared to the GP. Despite heterogeneity across the three samples in terms of duration and severity of disease, deficits related to physical well-being were consistent and clinically meaningful. Different patterns of deficits emerged when comparing the three samples to other disease benchmarks. This may be due to the heterogeneity in the community-based sample where patients varied in duration of disease and course of treatment versus the other AL amyloidosis samples which were comprised of newly diagnosed and/or treatment naïve patients. [Display omitted] DisclosuresBayliss:Prothena Biosciences Inc: Research Funding. White:Prothena Biosciences Inc: Research Funding. McCausland:Prothena Biosciences Inc: Research Funding. Guthrie:Prothena: Employment, Equity Ownership, Other: Leadership.

Changes in Health-Related Quality of Life (HRQoL) Between an Initial and Six-Month Follow-Up Survey in an Observational, Community-Based Study of Patients with AL Amyloidosis

IntroductionLight-chain (AL) amyloidosis is a rare disease in which misfolded light chains are deposited in tissues, which may lead to organ failure, disability, and death. We present changes in health-related quality of life (HRQoL) between an initial and a six-month follow-up survey from an observational, community-based study of patients with AL amyloidosis.MethodsWe partnered with patient advocacy groups to recruit a diverse sample of AL amyloidosis patients (n = 341 initial, n=226 at six-months; 66%) to participate in a non-interventional, community-based study. Online surveys were used to assess demographics, disease and treatment characteristics, and health-related quality of life (HRQoL). HRQoL measures included the patient global assessment of change (PGAC), a five-level ordinal item that asks patients to rate how much their condition has improved or worsened since their initial survey, and the SF-36v2® Health Survey (SF-36v2). The SF-36v2 measures HRQoL across eight scales and two component summary scores of functional health and well-being. Higher scores represent better functioning. Paired t-tests were used to examine significant changes within the full sample and key subgroups. ANCOVA methods, controlling for baseline scores, were conducted to compare changes for the following groups: 1) recently treated patients who received treatment during the past year vs. those whose most recent treatment was more than one year ago; and 2) patients who reported improvement vs. worsening over the six-month period on the PGAC. Analysis of variance was used to compare the SF-36v2 scores from AL amyloidosis patients to a sample representing a general population (GP) norm. The GP data were adjusted to the age and gender distribution of the patient sample using separate ordinary least-squares regression models, with each SF-36 scale or summary score as a dependent variable.ResultsAt six-month follow-up, patients were 56.3% female, 91.6% white, and an average of 61.3 years of age. Patients’ average time since diagnosis was 5 years, and almost half had three or more organs affected by AL amyloidosis (48.7%). The most reported symptoms were fatigue (81.9%), shortness of breath (52.7%), and numbness of arms and legs (46.2%). Over a quarter of patients had received ≥ 5 treatment series (26.1%), and about half were currently or had recently received treatment (49.1%), with 44.7% of patients currently in complete hematologic response. Nearly a third (31.3%) of patients reported that their AL amyloidosis had somewhat or very much improved since the initial survey and 21.0% described their condition as somewhat or very much worse.No significant changes in SF-36v2 scores were observed in the full sample after adjusting for multiple comparisons. Given the stability of SF-36v2 scores over time, significant deficits existed at both baseline and follow-up relative to a GP (Figure 1).For most scales, the SF-36v2 scores changed positively among patients who described their condition as improved and declined among those whose condition reportedly worsened (Figure 2). Mean change differed significantly by improvement status for Physical Functioning, Role Physical, General Health, and Vitality scales, as well as the Physical Component Score (P<0.05 for all).Mean changes in the General Health scale of the SF-36v2 differed significantly by time since last treatment (P=0.003), where the scores declined among recently treated patients and improved among those treated more than a year ago (-0.9 vs. 1.2, respectively).ConclusionsThis study describes patients with AL amyloidosis in a community-based online study and provides insight into changes in HRQoL over a six-month period. Since this is a non-interventional study with almost half of patients in remission, we examined change in HRQoL with three approaches (full sample, by time since last treatment, and by patients' self-assessment of their condition). Although there was little significant change in HRQoL in the six-month period, positive changes were observed among patients who described their condition as improved. Furthermore, significant deficits in HRQoL persisted over time. It may be that six months is not a long enough period to observe change, particularly in a sample where the majority of patients are not newly diagnosed. Our study will continue to follow these patients through 24 months post-study entry which may provide a broader view. [Display omitted] [Display omitted] DisclosuresWhite:Prothena Biosciences Inc: Research Funding. Bayliss:Prothena Biosciences Inc: Research Funding. McCausland:Prothena Biosciences Inc: Research Funding. Oliver:Prothena Biosciences, Inc.: Employment, Equity Ownership. Guthrie:Prothena: Employment, Equity Ownership, Other: Leadership.

Association of Persistent Postconcussion Symptoms With Pediatric Quality of Life

ImportancePersistent postconcussion symptoms (PPCS) pose long-term challenges and can negatively affect patients’ health-related quality of life (HRQoL). To date, no large comprehensive study has addressed the association between PPCS and HRQoL.ObjectivesTo determine the association between HRQoL and PPCS at 4 weeks after concussion and assess the degree of impairment of HRQoL in the subsequent 12 weeks.Design, Setting, and ParticipantsIn a prospective, multicenter cohort study (Predicting Persistent Postconcussive Problems in Pediatrics [5P]) from August 14, 2013, to September 30, 2014, children aged 5 to 18 years who presented to the emergency department within 48 hours after head injury and were considered to have an acute concussion were enrolled across 9 pediatric emergency departments within the Pediatric Emergency Research Canada Network. Persistent postconcussion symptoms were defined as 3 or more persistent symptoms on the validated Post-Concussion Symptom Inventory at 4 weeks. Linear mixed effects random coefficients models evaluated the association between PPCS and HRQoL, adjusting for potential confounders including age, sex, prior concussions, migraine, anxiety, learning disability, depression, and sleep disorder.Main Outcomes and MeasuresThe primary outcome was HRQoL assessed with the validated Pediatric Quality of Life Inventory version 4.0 (PedsQL-4.0) at 4, 8, and 12 weeks after head injury.ResultsOf 2006 children enrolled (median age, 11.8 years [interquartile range, 8.9-14.6 years]; 1241 boys and 765 girls), 1667 (83.1%) completed the PedsQL-4.0 at all 3 time points. Of these 1667 children, the 510 with PPCS (30.6%) had lower total PedsQL-4.0 scores (mean, 70.0) than did those without PPCS (mean, 80.3; mean difference, –10.3; 95% CI, −9.4 to −11.2). Patients with PPCS also had significantly lower physical, emotional, social, and school PedsQL-4.0 subscores at 4, 8, and 12 weeks. Patients with PPCS had lower HRQoL than published healthy norms at 4 weeks (mean difference, 13.89; 95% CI, 11.55-16.23), 8 weeks (mean difference, 11.63; 95% CI, 9.34-13.93), and 12 weeks (mean difference, 9.38; 95% CI, 7.01-11.75; P < .001). Patients who recovered from concussion also had lower HRQoL than norms at 4 weeks (mean difference, 3.56; 95% CI, 1.28-5.85) and 8 weeks (mean difference, 2.75; 95% CI, 0.48-5.02; P < .05). School functioning PedsQL-4.0 subscores were significantly lower for all children regardless of PPCS status at all time points.Conclusions and RelevanceChildren with PPCS have lower HRQoL compared with those who have recovered from concussion, yet deficits in HRQoL are pervasive across all domains and may persist for months even in children whose symptoms have resolved. Future interventional research should target the effect of concussion on HRQoL.

Worse quality of life in young and recently diagnosed breast cancer survivors compared with female survivors of other cancers: A cross-sectional study.

Literature focusing on health-related quality of life (HRQoL) by cancer site among women only is scarce. This study examines HRQoL of breast cancer (BC) survivors compared with female survivors of other cancers, and to understand which subgroups of BC survivors were particularly at risk of reduced HRQoL. We placed emphasis on young (<50 years) and recently diagnosed (≤5 years) survivors, where the deficits in HRQoL were most pronounced. The cross-sectional study consisted of 2,224 BC survivors, 8,504 non-cancer controls and 2,205 other cancer survivors in the Karma study. We examined HRQoL differences using linear regression analyses in the whole cohort and in a subset of young and recently diagnosed BC survivors (n = 242) and female survivors of other cancers (n = 140) with comparable ages at diagnosis (43.6 vs 43.6, p = 0.917) and time since diagnosis (2.3 vs 2.8 years, p < 0.001). HRQoL was assessed using the EORTC QLQ-C30 questionnaire. While only cognitive functioning was significantly compromised in BC survivors compared with survivors of other cancers when women of all ages were included, young BC survivors reported significantly lower HRQoL on multiple functional scales (global quality of life, emotional, role, social and cognitive functioning) and experienced more fatigue and insomnia. BC survivors with any prior medical history of mental disorders reported poorer HRQoL than those without such a history. We also observed a close-knit relationship between tumor and treatment characteristics. BC survivors perform poorly in HRQoL in comparison with female survivors of other cancers. Our results emphasize the importance of age- and gender-appropriate comparison groups.

Quality-of-Life Impairments Persist Six Months After Treatment of Graves' Hyperthyroidism and Toxic Nodular Goiter: A Prospective Cohort Study.

The treatment of hyperthyroidism is aimed at improving health-related quality of life (HRQoL) and reducing morbidity and mortality. However, few studies have used validated questionnaires to assess HRQoL prospectively in such patients. The purpose of this study was to assess the impact of hyperthyroidism and its treatment on HRQoL using validated disease-specific and generic questionnaires. This prospective cohort study enrolled 88 patients with Graves' hyperthyroidism and 68 with toxic nodular goiter from endocrine outpatient clinics at two Danish university hospitals. The patients were treated with antithyroid drugs, radioactive iodine, or surgery. Disease-specific and generic HRQoL were assessed using the thyroid-related patient-reported outcome (ThyPRO) and the Medical Outcomes Study 36-item Short Form (SF-36), respectively, evaluated at baseline and six-month follow-up. The scores were compared with those from two general population samples who completed ThyPRO (n = 739) and SF-36 (n = 6638). Baseline scores for patients with Graves' hyperthyroidism and toxic nodular goiter were significantly worse than those for the general population scores on all comparable ThyPRO scales and all SF-36 scales and component summaries. ThyPRO scores improved significantly with treatment on all scales in Graves' hyperthyroidism and four scales in toxic nodular goiter, while SF-36 scores improved on five scales and both component summaries in Graves' hyperthyroidism and only one scale in toxic nodular goiter. In Graves' hyperthyroidism, large treatment effects were observed on three ThyPRO scales (Hyperthyroid Symptoms, Tiredness, Overall HRQoL) and moderate effects on three scales (Anxiety, Emotional Susceptibility, Impaired Daily Life), while moderate effects were seen in two ThyPRO scales in toxic nodular goiter (Anxiety, Overall HRQoL). However, significant disease-specific and generic HRQoL deficits persisted on multiple domains across both patient groups. Graves' hyperthyroidism and toxic nodular goiter cause severe disease-specific and generic HRQoL impairments, and HRQoL deficits persist in both patient groups six months after treatment. These data have the potential to improve communication between physicians and patients by offering realistic estimates of expected HRQoL impairments and treatment effects. Future studies should identify risk factors for persistent HRQoL deficits, compare HRQoL effects of the various therapies, and thereby aid in determining the optimal treatment strategies.

The relationship between post-injury measures of cognition, balance, symptom reports and health-related quality-of-life in adolescent athletes with concussion

Background: Little is known about the relationship between post-concussion impairments and health-related quality-of-life (HRQoL). The primary purpose of this study was to determine the relationship between traditional concussion assessments and HRQoL in adolescent athletes post-concussion. The secondary purpose was to determine the association between HRQoL deficits and time lost.Methods: In total, 1134 athletes completed a baseline assessment battery. HRQoL measures included the Pediatric Quality of Life Inventory (PedsQL), Multidimensional Fatigue Scale (MFS) and Headache Impact Test-6. In total, 122 athletes sustained a concussion and underwent follow-up testing at 3 and 10 days post-injury.Results: The strongest relationships were between symptom severity and HRQoL. For concurrent regression analyses at Day 3, PedsQL-Physical accounted for 17.9% of the variance in time lost beyond that accounted for by traditional measures. At Day 10, PedsQL-School accounted for 15.2% and symptom severity for 7.1% of this variance. In predictive analyses, at Day 3, PedsQL-Physical accounted for 3.9% and MFS-General for 3.3% of the variance in time lost beyond that accounted for by traditional measures. At Day 10, MFS-Cognitive accounted for 12.0% of this variance.Conclusions: HRQoL appears to play a role in time lost post-concussion and should be measured in combination with traditional concussion assessments.

Long-term quality of life in children after open airway surgery for laryngotracheal stenosis

ObjectivesThe purpose of this study is to evaluate the long-term health related quality of life (HRQoL) in a cohort of children surgically treated for laryngotracheal stenosis (LTS). Study designProspective cohort study. MethodsParents of children between 4 and 18 years at follow-up completed the Child Health Questionnaire Parent Form (CHQ-PF50). Children between 11 and 18 years at follow-up completed the Child Health Questionnaire Child Form (CHQ-CF87). Biographical and pre-operative data were extracted from the hospital records. Post-operative measurements consisted of the Bruce treadmill test and pulmonary function testing (PFT). ResultsFifty-four parents completed the CHQ-PF50; twenty-one children completed the CHQ-CF87. The CHQ-PF50 was significantly worse than the norm population on the subscales physical functioning, role functioning: emotional/behavior, general health perceptions, family activities, parental impact: emotional, and time. CHQ-CF87 was significantly worse than the norm population on physical functioning and better on mental health. After multivariate analysis, presence of co-morbidities and glottic stenosis are the most important pre-operative factors for worse scores on general health. As post-operative measurements, the Bruce treadmill test and peak expiratory flow (PEF) correlate well with HRQoL physical subscales. ConclusionsAt long-term follow-up after treatment for LTS, deficits in HRQoL may still exist. Presence of co-morbidities and glottic stenosis are important negative factors for long-term HRQoL. The Bruce treadmill test and peak expiratory flow on pulmonary function testing correlate well with physical subscales on HRQoL. A long-term multidisciplinary follow-up with assessment of HRQoL is advised in patients treated for LTS. Level of evidence2B, individual prospective cohort study.

Health-Related Quality of Life in Patients with Idiopathic Pulmonary Fibrosis.

Idiopathic pulmonary fibrosis (IPF) produces symptoms and activity limitations that impair health-related quality of life (HRQOL). The Patient-Reported Outcomes Measurement Information System(®) (PROMIS(®)) includes measures of self-reported health and HRQOL for a range of conditions. This study evaluated the HRQOL of individuals with IPF using PROMIS measures and examined associations between HRQOL and key symptoms or supplemental oxygen need. Individuals who reported being told by a doctor that they have IPF completed an online battery of measures at baseline and 7-10days later (for test-retest reliability). Measures included a brief survey of demographic and health-related questions, the PROMIS-29 profile, the Modified Medical Research Council Dyspnea Scale (MMRC), PROMIS dyspnea severity short form, A Tool to Assess Quality of life in IPF (ATAQ-IPF) and one cough item from the Functional Assessment of Chronic Illness Therapy (FACIT). 220 individuals were included in the final sample. Except for sleep disturbance, all PROMIS domain scores significantly (p<.01) differed by MMRC level. Supplemental oxygen users were more impaired than non-users in fatigue, physical function, and social role participation (p<0.01). The test-retest reliability was acceptable to excellent (>0.7) for all scales, but was lower for sleep disturbance (0.64). People with IPF report substantial deficits in HRQOL across a range of PROMIS domains, and deficits vary by dyspnea and cough severity. These deficits warrant monitoring in clinical practice and consideration when investigating new therapies. Further research is required to further evaluate the psychometric performance of the PROMIS-29 in IPF.

Patient-Reported Outcome Measures in Individuals With Chronic Ankle Instability: A Systematic Review.

A comprehensive systematic literature review of the health-related quality-of-life (HRQOL) differences among individuals with chronic ankle instability (CAI), ankle-sprain copers, and healthy control participants has not been conducted. It could provide a better indication of the self-reported deficits that may be present in individuals with CAI. To systematically summarize the extent to which HRQOL deficits are present in individuals with CAI. We searched for articles in the electronic databases of EBSCO Host and PubMed Central using key words chronic, functional, mechanical, coper, instability, sprains, and patient-assessed. We also performed a hand search of reference lists, authors, and patient-reported outcomes (PROs) of the articles screened for inclusion. Studies were included if they (1) incorporated a PRO as a participant descriptor or as a study outcome to compare adults with CAI to ankle-sprain copers or healthy controls, (2) were written in English, and (3) were published in peer-reviewed journals. Two authors independently assessed methodologic quality using the modified Downs and Black Index. Articles were filtered into 3 categories based on between-groups comparisons: CAI and copers, CAI and healthy control participants, copers and healthy participants. We calculated Hedges g effect sizes and 95% confidence intervals to examine PRO group differences. Of the 124 studies assessed for eligibility, 27 were included. A total of 24 articles compared PROs in individuals with CAI and healthy controls, 7 compared individuals with CAI and copers, and 4 compared copers and healthy controls. Quality scores on the modified Downs and Black Index ranged from 52.9% to 88.2%, with 8 high-, 16 moderate-, and 3 low-quality studies. Overall, we observed moderate to strong evidence that individuals with CAI displayed deficits on generic and region-specific PROs compared with copers and healthy controls. However, evidence that differences exist between copers and healthy controls was conflicting. In addition, for dimension-specific outcomes, evidence to suggest that fear of reinjury is heightened in individuals with CAI was limited. The evidence suggested that CAI is associated with functional and HRQOL deficits, particularly when examined with region-specific PROs. However, PROs do not appear to differ between copers and healthy controls.

Quantifying the importance of disease burden on perceived general health and depressive symptoms in patients within the Mayo Clinic Biobank.

BackgroundDeficits in health-related quality of life (HRQOL) may be associated with worse patient experiences, outcomes and even survival. While there exists evidence to identify risk factors associated with deficits in HRQOL among patients with individual medical conditions such as cancer, it is less well established in more general populations without attention to specific illnesses. This study used patients with a wide range of medical conditions to identify contributors with the greatest influence on HRQOL deficits.MethodsSelf-perceived general health and depressive symptoms were assessed using data from 21,736 Mayo Clinic Biobank (MCB) participants. Each domain was dichotomized into categories related to poor health: deficit (poor/fair for general health and ≥3 for PHQ-2 depressive symptoms) or non-deficit. Logistic regression models were used to test the association of commonly collected demographic characteristics and disease burden with each HRQOL domain, adjusting for age and gender. Gradient boosting machine (GBM) models were applied to quantify the relative influence of contributors on each HRQOL domain.ResultsThe prevalence of participants with a deficit was 9.5 % for perception of general health and 4.6 % for depressive symptoms. For both groups, disease burden had the strongest influence for deficit in HRQOL (63 % for general health and 42 % for depressive symptoms). For depressive symptoms, age was equally influential. The prevalence of a deficit in general health increased slightly with age for males, but remained stable across age for females. Deficit in depressive symptoms was inversely associated with age. For both HRQOL domains, risk of a deficit was associated with higher disease burden, lower levels of education, no alcohol consumption, smoking, and obesity. Subjects with deficits were less likely to report that they were currently working for pay than those without a deficit; this association was stronger among males than females.ConclusionsComorbid health burden has the strongest influence on deficits in self-perceived general health, while demographic factors show relatively minimal impact. For depressive symptoms, both age and comorbid health burden were equally important, with decreasing deficits in depressive symptoms with increasing age. For interpreting patient-reported metrics and comparison, one must account for comorbid health burden.

Health-related quality of life is associated with stroke deficits in older adults.

although the functional impairments of stroke survivors are associated with poor health-related quality of life (HRQoL), few studies have demonstrated the impact of individual stroke deficits on the quality of life of survivors. In this study, we investigated the association between HRQoL and stroke-related deficits, especially with respect to the number and types of deficits, in older adults. the data were obtained from the 2008 and 2009 Korean Community Health Survey. The EuroQoL 5 Dimension (EQ-5D) questionnaire used as the HRQoL index, and stroke-related information included the number of stroke deficits and five types of deficits. of the 122,095 participants, 6,698 (5.5%) subjects had a history of stroke, of whom 2,222 patients (33.2%) reported one or more stroke-related deficits. After adjustments for potential variables, the EQ-5D scores of the stroke survivors with persisting deficits were significantly reduced as the number of stroke deficits increased (β = -0.080, -0.147, -0.229, -0.252 and -0.293 for one, two, three, four and five deficits, respectively). The type of stroke deficits was associated with the level of HRQoL. Specifically, the adjusted EQ-5D score of patients who suffered from hemiplegia (β = -0.143; P value < .00001) was worse than that of patients with any stroke deficits. The most frequent problems were related to mobility and pain/discomfort, regardless of the number or type of stroke deficits. we found that impaired HRQoL was significantly associated with the number and type of stroke deficits in older adults with a history of stroke.

Quality of life in patients with benign nontoxic goiter: impact of disease and treatment response, and comparison with the general population.

While health-related quality of life (HRQoL) issues often prompt treatment of benign nontoxic goiter (NTG), few clinical studies have systematically assessed HRQoL in patients with this condition. The purpose of the present study was to evaluate thyroid-related and generic HRQoL in patients with benign NTG, as compared to the general population, before and six months after treatment. Thyroid-related and generic HRQoL were assessed with Thyroid Patient-Reported Outcome (ThyPRO) and Medical Outcomes Study 36-item Short Form (SF-36), respectively. Baseline and six-month post-treatment HRQoL assessments were obtained from 111 patients with NTG who underwent radioiodine therapy (32%), hemithyroidectomy (53%), total thyroidectomy (12%), or cyst aspiration with ethanol sclerotherapy (4%). Euthyroid patients were enrolled at baseline, 80% of whom remained euthyroid six months post-treatment, with 20% experiencing subclinical thyroid dysfunction. Normative ThyPRO (n=739) and SF-36 (n=6638) data were collected from representative general population samples. Score differences between patients and the general population were analyzed with multivariate linear regression analysis, adjusting for age, sex, comorbidity, and educational status. Changes in scores between baseline and follow-up were analyzed with the paired t-test, and magnitudes of score changes were evaluated as effect sizes (mean difference/SDbaseline; 0.2-0.5 indicating small, 0.5-0.8 moderate, and >0.8 large effects). Patients' baseline scores were significantly worse than those in the general population on 9 of the 13 ThyPRO scales. Six months after treatment, the patients' ThyPRO scores had improved on six scales, with large/moderate effects on the Goiter Symptoms and Anxiety scales. However, on eight scales, the post-treatment patient scores were still significantly worse than the general population scores. At baseline, patients had worse scores than the general population on four of the eight SF-36 scales and the SF-36 Mental Component Summary, none of which improved after treatment. Compared with the general population, patients with NTG had greatest HRQoL impairment at baseline on the Goiter Symptoms and Anxiety scales, which also demonstrated the largest post-treatment improvements. However, both disease-specific and generic HRQoL deficits persisted six months after treatment. In order to improve individualized care, future studies should focus on identifying risk factors for persistent HRQoL deficits and compare HRQoL effects of the various goiter treatment modalities in relation to thyroid phenotype.