Future Health-related Quality Of Life Research Articles

Health-Related Quality of Life in severely injured patients in Finland: an observational cohort study of 325 patients with 1-year follow-up

BackgroundMajor trauma has a significant effect on Health-Related Quality of Life (HR-QoL). It is unclear, however, which factors most affect HR-QoL. This study aims to evaluate HR-QoL after severe injury in Finland and determine how different injury patterns and patient-related factors, such as level of education and socioeconomic group, are associated with HR-QoL. We also assess how well different injury scoring systems associate with HR-QoL.MethodsWe retrospectively analyzed 325 severely injured trauma patients (aged ≥ 18 years, New Injury Severity Score, (NISS) ≥ 16, and alive at 1 year after injury) treated in the Intensive Care Unit (ICU) or High Dependence Unit (HDU) of Tampere University Hospital (TAUH) from 2013 through 2016. HR-QoL was assessed with the EQ-5D-3L questionnaire completed during ICU stay and 1 year after injury. HR-QOL index values and reported problems were further compared with Finnish population norms.ResultsThe severity of the injury (measured by ISS and NISS) had no significant association with the decrease in HR-QoL. Length of ICU stay had a weak negative correlation with post-injury HR-QoL and a weak positive correlation with the change in HR-QoL. The largest mean decrease in HR-QoL occurred in patients with spinal cord injury (Spine AIS ≥ 4) (-0.338 (SD 0.136)), spine injury in general (Spine AIS ≥ 2 (-0.201 (SD 0.279)), and a lower level of education (-0.157 (SD 0.231)). Patient’s age, sex, or socioeconomic status did not seem to associate with smaller or greater changes in HR-QoL.ConclusionsAfter serious injury, many patients have permanent disabilities which reduce HR-QoL. Injury scoring systems intended for assessing the risk for death did not seem to associate with HR-QoL and are not, therefore, a meaningful way to predict the future HR-QoL of a severely injured patient. Recovery from the injury seems to be weaker in poorer educated patients and patients with spinal cord injury, and these patients may benefit from targeted additional measures. Although there were significant differences in baseline HR-QoL levels between different socioeconomic groups, recovery from injury appears to be similar, which is likely due to equal access to high-quality trauma care.

Determinants of Physical and Mental Health-related Quality of Life among Patients with Breast Cancer During COVID-19 Pandemic

Background: The concern surrounding the physical and mental health-related quality of life (HRQoL) among patients with breast cancer emerged during COVID-19. However, there is a lack of sufficient studies that have specifically addressed this issue. It is crucial to emphasize the evaluation of this aspect as it significantly impacts the enhancement of future physical and mental HRQoL for these patients.Purpose: This study investigated the determinants of physical and mental HRQoL among patients with breast cancer during COVID-19.Methods: In a cross-sectional study conducted between September and October 2022, participation involved 260 patients diagnosed with breast cancer, selected through convenience sampling. Our observation focused on assessing the outcomes of physical and mental HRQoL using the Short Form (SF-12) questionnaire for data collection. Additionally, the data underwent analysis via binary logistic regression.Results: Respondents aged <50 years (p=0.010; aOR=2.08; 95% CI=1.18–3.67), unemployed (p=0.022; aOR=2.29; 95% CI=1.16–4.53), and had high depression (p=0.026; aOR=2.41; 95% CI=1.13–5.12) have a more likelihood to have low physical HRQoL. In addition, unemployed respondents (p=<0.001; aOR=4.15; 95% CI=2.14–8.04) and had high anxiety (p=0.004; aOR=2.71; 95% CI=1.38–5.33) have more likelihood to have low mental HRQoL.Conclusion: In this study, it was found that anxiety, depression, and unemployed respondents were associated with a higher likelihood of experiencing lower physical and mental HRQoL. Nurses and healthcare workers should prioritize addressing psychological issues such as anxiety and depression among breast cancer patients, emphasizing the necessity for interventions aimed at alleviating these concerns.

Pain in patients with motor neuron disease: Variation of pain and association with disease severity, health-related quality of life and depression - A longitudinal study.

To describe levels of pain over time during disease progression in individual patients and for a total sample of patients with motor neuron disease (MND), respectively, and to examine associations between pain, disease severity, health-related quality of life (HRQOL), and depression. A prospective cohort study was conducted on 68 patients with MND, including data collected on five occasions over a period of 2 years. Pain was assessed using the Brief Pain Inventory - Short Form. Depression was assessed using the Amyotrophic Lateral Sclerosis (ALS)-Depression-Inventory (ADI-12). Disability progression was measured using the Amyotrophic Lateral Sclerosis Functional Rating Scale - Revised Version (ALSFRS-R). HRQOL was assessed using the Amyotrophic Lateral Sclerosis Assessment Questionnaire (ALSAQ-5). Participants reported great individual variation over time. The median level of pain was 4 (min 0 and max 10). Higher levels of pain during the last 24h were associated with higher depression scores (ADI-12), poorer quality of life (ALSAQ-5), and lower reporting of fine and gross motor skills (ALSFRS-R). Baseline pain levels did not predict future values of depression and function. Individuals reporting average pain >3 experienced more hopelessness toward the future and reported higher depression scores compared with participants reporting average pain <3. Great within-individual variation of pain intensity was reported. Pain intensity was associated with depression, function and HRQOL cross-sectionally, but it did not have a strong prognostic value for future depression, function, or HRQOL. Patients with MND should be offered frequent assessment of pain and depressive symptoms in person-centered care, allowing for individualization of treatment.

Generalized anxiety is a predictor of impaired quality of life in patients with atrial fibrillation: Findings from the prospective observational ARENA study

ObjectiveAtrial fibrillation (AF) is associated with impaired health-related quality of life (HRQoL), an increased risk of morbidity, and mortality. Traditional AF-related outcomes (e.g., AF recurrence) primarily demonstrate the physiological benefits of AF management but do not focus on the benefits experienced subjectively by the patient (i.e., patient-reported outcomes), which have been suggested as optimal endpoints in AF intervention studies. The aim of this study is to identify medical and psychological factors associated with impaired HRQoL at 1-year follow-up. MethodsUsing data from the prospective observational multicenter ARENA study in patients with AF, we analyzed associations between medical factors, anxiety, and HRQoL at 1-year follow-up assessed using 5-level EuroQoL-5D. ResultsIn 1353 AF patients (mean age 71.4 ± 10.3 years, 33.8% female), none of the medical predictors (e.g., heart disease) or history of cardioversion were associated with HRQoL at the 1-year follow-up. Higher generalized anxiety (β = -0.114, p < .001) but not cardiac anxiety (β = -0.006, p = .809) at baseline predicted decreased HRQoL, independent of confounding variables and patients' medical status. Furthermore, the worsening of patients' generalized anxiety was associated with decreased HRQoL (ß = -0.091, p < .001). In contrast, the improvement of generalized anxiety over time predicted higher HRQoL (ß = 0.097, p < .001). Finally, the worsening of patients' cardiac anxiety over time was associated with decreased HRQoL (ß = -0.081, p < .001). ConclusionOur results highlight the importance of anxiety as a predictor of future HRQoL in patients with AF. Additional studies to examine the impact of anxiety treatment on HRQoL in this population are needed. Clinical trial registrationThe investigators registered on ClinicalTrials.gov (NCT02978248) on November 30, 2016 https://clinicaltrials.gov/ct2/show/NCT02978248.

Health-related Quality of Life in 10 years Long-term Survivors of Chronic Kidney Disease: A From-J Study

ObjectiveThe Chronic Kidney Disease (CKD) practice facilitation program in the Frontier of Renal Outcome Modifications in Japan (FROM-J) study reduced cardiovascular disease (CVD) events in patients with CKD. 10-year long-term survivors with CKD lived with serious complications, including end-stage kidney disease (ESKD) and CVD. This study aimed to measure health-related quality of life (HRQOL) in 10-year long-term CKD survivors and examine the predictors and determinants of clinical indices for measured QOL scores. MethodsThe EQ-5D-5L, a generic preference-based instrument, was administered to 1,473 CKD survivors enrolled in the FROM-J study. The 10th-year data collection was performed by either primary care physicians or participants who filled out questionnaires from October 2018 to March 31, 2019. ResultsThe response rate was 38.2% (423/1,473). The mean QOL score was 0.893 (95% confidence interval (CI), 0.880–0.906), and the median QOL score was 1.000 (interquartile range (IQR), 0.806–1.000). The mean QOL score in participants with renal replacement therapy was 0.824 (95% CI, 0.767–0.881), and the median was 0.828 (IQR, 0.755–1.000). The mean QOL score in participants with CVD was 0.877 (95% CI, 0.811–0.943), and the median was 1.000 (IQR, 0.723–1.000). The mean QOL score in participants with 50% decline in eGFR was 0.893 (95% CI, 0.860–0.926), and the median was 0.889 (IQR, 0.825–1.000). The decrease in QOL scores with baseline CKD stages was significant according to the Jonckheere–Terpstra test for trend (P = 0.002). Baseline age, systolic blood pressure, and history of hyperuricemia were significant predictors of 10th-year QOL scores. ConclusionWe suggest that CKD complications negatively affect the QOL scores in 10-year long-term survivors with CKD. CKD guideline-based practices, prevention of ESKD/CVD and management of hypertension, diabetes and hyperuricemia, might contribute to future HRQOL in patients with CKD.

Depressive symptoms decrease health-related quality of life of patients with coronary artery disease and diabetes: a 12-month follow up study in primary care

Objective Health-related quality of life (HRQoL) is a multidimensional patient-related outcome. Less is known about the role of depressive symptoms on HRQoL in chronic diseases. This follow-up study analyzed depressive symptoms’ association with HRQoL change measured with 15D in patients with chronic diseases. Design and setting A total of 587 patients from the Siilinjärvi Health Center, Finland were followed up due to the treatment of hypertension (HA), coronary artery disease (CAD) or diabetes (DM). Depressive symptoms were based on Beck Depression Inventory (BDI) (BDI ≥10 =depressive symptoms). HRQoL was assessed at the baseline and after 12 months. Results There were 244 patients with HA (mean age 70 years, 59% women); 103 patients (72 years, 38%) with CAD and 240 with DM (67 years, 52%). The change from baseline to the 12-month follow-up in 15D was significantly different between patients without and with depressive symptoms in CAD (p < 0.001) and DM (p = 0.024). In CAD with depressive symptoms, the change was −0.064 (95% CI: −0.094 to −0.035) and in DM −0.018 (95% CI: −0.037 to 0.001). In the 15 HRQoL dimensions of 15D, a depressive symptoms-related decrease was found in three dimensions with HA, in 9 with CAD and in 7 with DM. As a function of the BDI at baseline, the 15D score decreased significantly among patients with CAD and DM. Conclusions Depressive symptoms impact negatively on future HRQoL among primary care patients with coronary artery disease and diabetes emphasizing that mood should be acknowledged in their care and follow-up. Trial registration Clinical Trials registration number: NCT02992431, registered December 14th 2016

Patient-reported outcomes in metastatic renal cell carcinoma trials using combinations versus sunitinib as first-line treatment.

Over the past 5 years, several new immunotherapy treatments have been tested for metastatic renal cell carcinoma (mRCC). Clinical trials assessing combinations of different immunotherapies, or of an immunotherapy with a tyrosine kinase inhibitor (TKI), have reported improved clinical outcomes compared with the standard of care - that is, treatments using TKIs alone. However, to understand the holistic impact of new treatments on patients, physicians must also consider effects on health-related quality of life (HRQoL). As patient-reported outcome measures (PROMs) on HRQoL are often treated as a secondary outcome in clinical trials, their collection and reporting are non-standardized and, therefore, difficult to compare and interpret. However, results from six clinical trials indicate that two immunotherapy treatments overwhelmingly outperform sunitinib in HRQoL measurements: nivolumab plus cabozantinib (CheckMate 9ER) and atezolizumab plus bevacizumab (IMmotion151). An additional two treatments generally outperform sunitinib: nivolumab plus ipilimumab (CheckMate 214) and lenvatinib plus pembrolizumab (CLEAR). Of three studies that reported no difference from sunitinib, two suffered design flaws that might have obscured HRQoL benefits (JAVELIN Renal 101and KEYNOTE-426). To ensure future HRQoL data are of the highest quality and comparable across trials, future studies should adopt best practices for the design, analysis and reporting of PROMs.

Health-related quality of life by race, ethnicity, and country of origin among cancer survivors.

Typical cancer research studies of health-related quality of life (HRQOL) in the United States do not include country of origin when examining race and ethnic group differences. This population-based, cross-sectional study used an innovative methodology to examine how self-reported racial and ethnic groups, by country of origin, report differential HRQOL experiences after adjusting for clinical and demographic characteristics, including socioeconomic status. Recruited from 4 cancer registries in California, Louisiana, and New Jersey, cancer survivors completed Patient-Reported Outcomes Measurement Information System measures of fatigue, pain interference, anxiety, depression, sleep disturbance, physical function, ability to participate in social roles, and cognitive function. Latent profile analysis clustered survivors in HRQOL clusters based on including all the Patient-Reported Outcomes Measurement Information System domains. The 5366 participants (60% female; 40% male; average age of 59.8 years) included 17% Asian, 18% Black, 21% Hispanic, and 41% White survivors. Survivors were grouped into 4 clusters: high HRQOL (26%), average HRQOL (34%), low HRQOL (29%), and very low HRQOL (11%). Among many differences by race, ethnicity, and country of origin, Caribbean cancer survivors were more likely to be in the very low HRQOL cluster (odds ratio = 2.67, 95% confidence interval = 1.31 to 5.43) compared with non-Hispanic White survivors. Similarly, American Indian and Alaska Native, Cuban, Dominican, and Puerto Rican cancer survivors had relatively high percentages in the very low HRQOL cluster. This study found statistically significant differences in HRQOL experience by race, ethnicity, and country of origin, even after adjusting for social determinants of health. These findings inform future HRQOL research to include these self-reported factors.

Symptoms reported by gastrointestinal stromal tumour (GIST) patients on imatinib treatment: combining questionnaire and forum data

PurposeTreatment with the tyrosine kinase inhibitor (TKI) imatinib in patients with gastrointestinal stromal tumours (GIST) causes symptoms that could negatively impact health-related quality of life (HRQoL). Treatment-related symptoms are usually clinician-reported and little is known about patient reports. We used survey and online patient forum data to investigate (1) prevalence of patient-reported symptoms; (2) coverage of symptoms mentioned on the forum by existing HRQoL questionnaires; and (3) priorities of prevalent symptoms in HRQoL assessment.MethodsIn the cross-sectional population-based survey study, Dutch GIST patients completed items from the EORTC QLQ-C30 and Symptom-Based Questionnaire (SBQ). In the forum study, machine learning algorithms were used to extract TKI side-effects from English messages on an international online forum for GIST patients. Prevalence of symptoms related to imatinib treatment in both sources was calculated and exploratively compared.ResultsFatigue and muscle pain or cramps were reported most frequently. Seven out of 10 most reported symptoms (i.e. fatigue, muscle pain or cramps, facial swelling, joint pain, skin problems, diarrhoea, and oedema) overlapped between the two sources. Alopecia was frequently mentioned on the forum, but not in the survey. Four out of 10 most reported symptoms on the online forum are covered by the EORTC QLQ-C30. The EORTC-SBQ and EORTC Item Library cover 9 and 10 symptoms, respectively.ConclusionThis first overview of patient-reported imatinib-related symptoms from two data sources helps to determine coverage of items in existing questionnaires, and prioritize HRQoL issues. Combining cancer-generic instruments with treatment-specific item lists will improve future HRQoL assessment in care and research in GIST patients using TKI.

Epistemic Beliefs: Relationship to Future Expectancies and Quality of Life in Cancer Patients

ContextExpectations about the future (future expectancies) are important determinants of psychological well-being among cancer patients, but the strategies patients use to maintain positive and cope with negative expectancies are incompletely understood. ObjectivesTo obtain preliminary evidence on the potential role of one strategy for managing future expectancies: the adoption of “epistemic beliefs” in fundamental limits to medical knowledge. MethodsA sample of 1307 primarily advanced-stage cancer patients participating in a genomic tumor testing study in community oncology practices completed measures of epistemic beliefs, positive future expectancies, and mental and physical health-related quality of life (HRQOL). Descriptive and linear regression analyses were conducted to assess the relationships between these factors and test two hypotheses: 1) epistemic beliefs affirming fundamental limits to medical knowledge (“fallibilistic epistemic beliefs”) are associated with positive future expectancies and mental HRQOL, and 2) positive future expectancies mediate this association. ResultsParticipants reported relatively high beliefs in limits to medical knowledge (M = 2.94, s.d.=.67) and positive future expectancies (M = 3.01, s.d.=.62) (range 0–4), and relatively low mental and physical HRQOL. Consistent with hypotheses, fallibilistic epistemic beliefs were associated with positive future expectancies (b = 0.11, SE=.03, P< 0.001) and greater mental HRQOL (b = 0.99, SE=.34, P = 0.004); positive expectancies also mediated the association between epistemic beliefs and mental HRQOL (Sobel Z=4.27, P<0.001). ConclusionsEpistemic beliefs in limits to medical knowledge are associated with positive future expectancies and greater mental HRQOL; positive expectancies mediate the association between epistemic beliefs and HRQOL. More research is needed to confirm these relationships and elucidate their causal mechanisms.

Neural Processes of Psychological Stress and Relaxation Predict the Future Evolution of Quality of Life in Multiple Sclerosis

Health-related quality of life (HRQoL) is an essential complementary parameter in the assessment of disease burden and treatment outcome in multiple sclerosis (MS) and can be affected by neuropsychiatric symptoms, which in turn are sensitive to psychological stress. However, until now, the impact of neurobiological stress and relaxation on HRQoL in MS has not been investigated. We thus evaluated whether the activity of neural networks triggered by mild psychological stress (elicited in an fMRI task comprising mental arithmetic with feedback) or by stress termination (i.e., relaxation) at baseline (T0) predicts HRQoL variations occurring between T0 and a follow-up visit (T1) in 28 patients using a robust regression and permutation testing. The median delay between T0 and T1 was 902 (range: 363–1,169) days. We assessed HRQoL based on the Hamburg Quality of Life Questionnaire in MS (HAQUAMS) and accounted for the impact of established HRQoL predictors and the cognitive performance of the participants. Relaxation-triggered activity of a widespread neural network predicted future variations in overall HRQoL (t = 3.68, pfamily−wise error [FWE]-corrected = 0.008). Complementary analyses showed that relaxation-triggered activity of the same network at baseline was associated with variations in the HAQUAMS mood subscale on an αFWE = 0.1 level (t = 3.37, pFWE = 0.087). Finally, stress-induced activity of a prefronto-limbic network predicted future variations in the HAQUAMS lower limb mobility subscale (t = −3.62, pFWE = 0.020). Functional neural network measures of psychological stress and relaxation contain prognostic information for future HRQoL evolution in MS independent of clinical predictors.

Quality of Life in the Swedish General Population During COVID-19 - Based on pre- and post-pandemic outbreak measurement

The outbreak of the pandemic COVID-19 (Coronavirus) has resulted in various international and national strategies, including non-pharmaceutical interventions (NPIs) such as social distancing and travel bans, which have purportedly mitigated the health loss due to the pandemic but also given rise to a severe economic crisis. Both factors, the pandemic and the NPIs, can be expected to have an impact on the Health-Related Quality-of-Life (HRQoL) of the population. The objective of this study was to estimate the impact on HRQoL of the Swedish adult population during the outbreak of the COVID-19 pandemic. A web-based survey was sent to randomised samples of the adult Swedish population before the outbreak of the pandemic in Sweden in February 2020 (n=1,016) and during the outbreak of the pandemic. The first wave pandemic data was collected in April 2020 (n=1,003), one-month after the outbreak and, the second wave data was collected in January 2021 (n=1,013), after 10-months living under the pandemic. HRQoL was measured using the EQ-5D-5L in the pandemic surveys, whereas the Visual Analogue Scale (VAS) was used in all surveys. The results suggested a reduction in average HRQoL as measured by VAS in the adult Swedish population, with 0.059 points reduction in VAS in April 2020 and 0.074 points reduction in January 2021, compared to the pre-pandemic measurement in February 2020. The loss in HRQoL was significant among respondents in the working age population (&lt;65 years), suggesting that the social and economic impact of NPIs were the primary drivers for this specific cohort. Findings of this study supports a wide public health perspective and future HRQoL measurements at the population level throughout the pandemic. Published: Online September 2021

How important is current physical fitness for future quality of life? Results from an 8-year longitudinal study on older adults.

A vast amount of research has focused on the effects of physical fitness (PF) on mortality, with little research evaluating the effects of PF on future expected health related quality of life (HRQoL). To evaluate how current PF influences future HRQoL measured in a prospective 8-year study in older adults. A total of 617 (157 males) older adults (>65y) participated in the study. PF was assessed with the EXERNET battery in 2008-2009 (baseline) and 2016-2017 (follow-up). HRQoL was assessed using the EQ-5D-3L questionnaire in both evaluations. PF tertiles were developed from baseline PF variables: FIT (highest PF values), REGULAR and UNFIT (lowest PF values) taking into account age and sex. Follow-up HRQoL values were compared to sex and age-specific expected values. Logistic regressions were performed to test differences between PF tertiles regarding future expected quality of life. Linear regressions were developed to test whether baseline PF could predict future HRQoL scores. The FIT group showed higher probabilities of an improved HRQoL when compared to the UNFIT group. All PF variables seemed to be important at some point of the study except upper extremities flexibility. Aerobic endurance was the variable that showed to be significant for most of the HRQoL predictions. PF influences future HRQoL in older adults who accordingly should try to remain fit to maintain an increased age-adjusted HRQoL.

Effectiveness of the Chiari Health Index for Pediatrics instrument in measuring postoperative health-related quality of life in pediatric patients with Chiari malformation type I.

The authors' previously published work validated the Chiari Health Index for Pediatrics (CHIP), a new instrument for measuring health-related quality of life (HRQOL) for pediatric Chiari malformation type I (CM-I) patients. In this study, the authors further evaluated the CHIP to assess HRQOL changes over time and correlate changes in HRQOL to changes in symptomatology and radiological factors in CM-I patients who undergo surgical intervention. Strong HRQOL evaluation instruments are currently lacking for pediatric CM-I patients, creating the need for a standardized HRQOL instrument for this patient population. This study serves as the first analysis of the CHIP instrument's effectiveness in measuring short-term HRQOL changes in pediatric CM-I patients and can be a useful tool in future CM-I HRQOL studies. The authors evaluated prospectively collected CHIP scores and clinical factors of surgical intervention in patients younger than 18 years. To be included, patients completed a baseline CHIP captured during the preoperative visit, and at least 1 follow-up CHIP administered postoperatively. CHIP has 2 domains (physical and psychosocial) comprising 4 components, the 3 physical components of pain frequency, pain severity, and nonpain symptoms, and a single psychosocial component. Each CHIP category is scored on a scale, with 0 indicating absent and 1 indicating present, with higher scores indicating better HRQOL. Wilcoxon paired tests, Spearman correlations, and linear regression models were used to evaluate and correlate HRQOL, symptomatology, and radiographic factors. Sixty-three patients made up the analysis cohort (92% Caucasian, 52% female, mean age 11.8 years, average follow-up time 15.4 months). Dural augmentation was performed in 92% of patients. Of the 63 patients, 48 reported preoperative symptoms and 42 had a preoperative syrinx. From baseline, overall CHIP scores significantly improved over time (from 0.71 to 0.78, p < 0.001). Significant improvement in CHIP scores was seen in patients presenting at baseline with neck/back pain (p = 0.015) and headaches (p < 0.001) and in patients with extremity numbness trending at p = 0.064. Patients with syringomyelia were found to have improvement in CHIP scores over time (0.75 to 0.82, p < 0.001), as well as significant improvement in all 4 components. Additionally, improved CHIP scores were found to be significantly associated with age in patients with cervical (p = 0.009) or thoracic (p = 0.011) syrinxes. The study data show that the CHIP is an effective instrument for measuring HRQOL over time. Additionally, the CHIP was found to be significantly correlated to changes in symptomatology, a finding indicating that this instrument is a clinically valuable tool for the management of CM-I.

Calidad de Vida: a systematic review of quality of life in Latino cancer survivors in the USA.

Cancer is the leading cause of death among Hispanics/Latinos. Thus, understanding health-related quality of life (HRQOL) needs among this diverse racial/ethnic group is critical. Using Ferrell's multidimensional framework for measuring QOL, we synthesized evidence on HRQOL needs among Hispanic/Latino cancer survivors. We searched MEDLINE/PubMed, EMBASE, CINAHL, and PsycINFO, for English language articles published between 1995 and January 2020, reporting HRQOL among Hispanic/Latino cancer survivors in the USA. Of the 648 articles reviewed, 176 met inclusion criteria, with 100 of these studies focusing exclusively on breast cancer patients and no studies examining end-of-life HRQOL issues. Compared with other racial/ethnic groups, Hispanics/Latinos reported lower HRQOL and a higher symptom burden across multiple HRQOL domains. Over 80% of studies examining racial/ethnic differences in psychological well-being (n = 45) reported worse outcomes among Hispanics/Latinos compared with other racial/ethnic groups. Hispanic/Latino cancer survivors were also more likely to report suboptimal physical well-being in 60% of studies assessing racial/ethnic differences (n = 27), and Hispanics/Latinos also reported lower social well-being relative to non-Hispanics/Latinos in 78% of studies reporting these outcomes (n = 32). In contrast, reports of spiritual well-being and spirituality-based coping were higher among Hispanics/Latinos cancer survivors in 50% of studies examining racial/ethnic differences (n = 15). Findings from this review point to the need for more systematic and tailored interventions to address HRQOL needs among this growing cancer survivor population. Future HRQOL research on Hispanics/Latinos should evaluate variations in HRQOL needs across cancer types and Hispanic/Latino subgroups and assess HRQOL needs during metastatic and end-of-life disease phases.

Health State Utilities in Children and Adolescents With Osteochondritis Dissecans of the Knee.

Background:The impact of osteochondritis dissecans (OCD) lesions of the knee on a child’s health-related quality of life has not previously been quantified. Preference-based health utility assessment allows patients to assign quality-of-life valuations (utilities) to different health states and conditions.Purpose:To determine (1) patient-reported utility scores for health states associated with pediatric OCD lesions of the knee and (2) whether these scores are associated with patient demographics or disease severity.Study Design:Cross-sectional study; Level of evidence, 3.Methods:Children, adolescents, and young adults being treated for OCD of the knee were interviewed to assess utilities for each of the 6 health states commonly encountered in the treatment of OCD: (1) symptomatic lesion, (2) nonoperative rehabilitation, (3) postoperative rehabilitation, (4) intermediate treatment success, (5) early degenerative knee changes, and (6) successful treatment (asymptomatic). Patients were asked to assign health utilities to each state using a standardized feeling thermometer (scale, 0-100), which were converted to a health state utility (scale, 0-1 [1 = perfect health]). Utilities were reported with descriptive statistics, and comparative analyses were performed to test whether assignments were associated with patient age, sex, or whether the OCD lesion required surgical intervention.Results:A total of 100 participants treated or undergoing treatment for OCD were prospectively enrolled; 74% were male (n = 74). The median age at the time of survey was 15 years (interquartile range, 13-16.5 years). Utility scores were as follows: symptomatic OCD lesion, 0.15; nonoperative rehabilitation, 0.30; postoperative rehabilitation, 0.30; early degenerative changes, 0.58; intermediate treatment success, 0.65; and successful treatment, 1.0. Utility scores were not associated with age, sex, or whether the participant underwent surgical treatment for the OCD lesion.Conclusion:The current study quantified patient-reported utilities for 6 OCD lesion health states, which may be used for future health-related quality of life, decision analysis, and quality/safety/value studies. These utility scores were stable and not affected by patient age, sex, or treatment strategy.

The Role of Grit in Health Care Management Skills and Health-related Quality of Life in College Students with Chronic Medical Conditions

PurposeAdolescents and young adults (AYAs) with chronic medical conditions are at risk for reduced health-related quality of life (HRQoL). Recent research on AYAs without chronic medical conditions found that greater health care management skills were related to higher HRQoL. In addition, grit, an intrapersonal strength, has been linked to greater health care management skills and HRQoL. The current study extended these findings to AYAs with a chronic medical condition. Design and methodsThree hundred and seventy-five undergraduates with a chronic medical condition completed questionnaires, including the short Grit Scale, Transition Readiness Assessment Questionnaire, and RAND 36-Item Short Form Survey. ResultsPath analysis revealed a significant direct effect of grit on health care management skills and on both mental and physical HRQoL. Further, health care management skills had a significant indirect effect on the grit → mental HRQoL association, but not on the grit → physical HRQoL association. ConclusionsHigher levels of grit were linked to better health care management skills and better mental and physical HRQoL. Further, grit and mental HRQoL were indirectly linked through health care management skills, suggesting the utility of these skills in improving mental HRQoL. Practice implicationsGiven the observed benefits of higher grit and health care management skills on emotional HRQoL, and the potential impact of health care management skills on future physical HRQoL, interventions targeting the enhancement of grit and health care management skills may be beneficial in improving the efficacy of transition readiness interventions.

Subjective health expectations of patients with age-related macular degeneration treated with antiVEGF drugs

BackgroundSubjective expectations regarding future health may influence patients’ judgement of current health and treatment effects, as well as adherence to therapies in chronic diseases. We aimed to explore subjective expectations on longevity and future health-related quality of life (HRQOL) of patients with age-related macular degeneration (AMD) treated with antiVEGF injections and analyse the influencing factors.MethodsConsecutive AMD patients in two ophthalmology centres were included. Demographics, clinical characteristics and informal care utilisation were recorded. Current health was evaluated by the EQ-5D generic health status questionnaire and time trade-off (TTO) methods. Happiness was measured on a visual analogue scale (VAS). Subjective life-expectancy and expected EQ-5D status at ages 70, 80 and 90 were surveyed. T-test was applied to compare subgroups and Pearson correlations were performed to analyse relationships between variables.ResultsOne hundred twenty two patients were involved (females 62%) with a mean (SD) age of 75.2 (7.9) years and disease duration of 2.9 (2.5) years. The majority were in AREDS-4 state, the better eye’s ETDRS was 64.7 (15.4). EQ-5D and TTO revealed moderate deterioration of health (0.66 vs. 0.72, p = 0.131), happiness VAS was 6.3 (2.2). Correlation between EQ-5D and ETDRS was moderate (R = 0.242, p < 0.05) and having both versus one eye in AREDS-4 resulted lower TTO (0.68 vs. 0.83; p = 0.013). Subjective life-expectancy did not differ significantly from statistical life-expectancy and had no significant impact on TTO. The self-estimated mean EQ-5D score was 0.60, 0.40 and 0.24 for ages 70, 80 and 90 which is lower than the population norm of age-groups 65–74, 75–84 and 85+ (0.77, 0.63 and 0.63, respectively). Age, gender, current EQ-5D, need for informal care and happiness were deterministic factors of subjective health expectations.ConclusionAMD patients with antiVEGF treatment have comparable HRQOL as the age-matched general public but expect a more severe deterioration of health with age. Older patients with worse HRQOL have worse subjective expectations. Exploring patients’ health expectations provides an opportunity for ophthalmologists to correct misperceptions and improve the quality of AMD care. Further studies should provide evidences on the relationship between subjective expectations and actual health outcomes, and on its impact on patients’ AMD-specific health behaviour.

Population-based reference values for the European Organization for Research and Treatment of Cancer Head and Neck module.

The purpose of this study was to establish population-based norms for the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-Head and Neck 35 (EORTC QLQ-HN35) to be used as references to facilitate the interpretation of results from health-related quality of life (HRQOL) studies of patients with head and neck cancer. The European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-Core 30 (EORTC QLQ-C30) and QLQ-HN35 were sent to a random sample representing the Swedish general population. The response rate was 69% (1504 participants of 2200 invited). The scores for the QLQ-C30 were comparable to previously published reference values. The reference values for the QLQ-HN35 were low, indicating few head and neck-specific problems in the population. For illustrative purposes, we also compared these reference values to our previously published HRQOL results obtained from patients with head and neck cancer at diagnosis and from 3-year survivors. These new reference values for EORTC QLQ-HN35 may be useful in future HRQOL studies.

Systematic review and meta-analysis of health-related quality of life in pediatric CNS tumor survivors.

Pediatric central nervous system (CNS) tumor survivors are at high risk for numerous late effects including decreased health-related quality of life (HRQOL). Our objective was to summarize studies describing HRQOL in pediatric CNS tumor survivors and compare HRQOL outcomes in studies that included a comparison group. EMBASE, MEDLINE, and PsychINFO were used to identify relevant articles published until August, 2016. Eligible studies reported outcomes for pediatric CNS tumor survivors diagnosed before age 21, at least 5 years from diagnosis and/or 2 years off therapy and used a standardized measure of HRQOL. All data were abstracted by two reviewers. Random-effects meta-analyses were performed using Review Manager 5.0. Of 1,912 unique articles identified, 74 were included in this review. Papers described 29 different HRQOL tools. Meta-analyses compared pediatric CNS tumor survivors to healthy comparisons and other pediatric cancer survivors separately. HRQOL was significantly lower for CNS (n = 797) than healthy comparisons (n = 1,397) (mean difference = -0.54, 95% confidence interval [CI] = -0.72 to -0.35, P < 0.001, I2 = 35%). HRQOL was also significantly lower for CNS (n = 244) than non-CNS survivors (n = 414) (mean difference = -0.56, 95% CI = -0.73 to -0.38, P < 0.00001, I2 = 0%). Pediatric CNS tumor survivors experience worse HRQOL than healthy comparisons and non-CNS cancer survivors. Future HRQOL work should be longitudinal, and/or multisite studies that examine HRQOL by diagnosis and treatment modalities.