Health-related Quality Of Life Survey Research Articles

Utility Estimation of Rituximab Versus Bendamustine-Rituximab Induction in Indolent Non-Hodgkin Lymphomas Using Patient-Reported Quality of Life Survey Data

BackgroundRituximab induction (RI) and bendamustine-rituximab (BR) induction are both options for the frontline management of indolent non-Hodgkin lymphomas (NHLs). Although BR induces longer progression-free survival than RI, BR confers more toxicity and a longer duration of initial induction than RI. The effects of RI versus BR on health-related quality of life (HRQoL) after induction treatment, and the implications on patient utility and quality-adjusted life-years (QALYs), have not been previously studied. We conducted a cost-utility analysis of RI versus BR utilizing patient-reported HRQoL survey data.MethodsPatient-reported utility data were collected from the Hoogland Lymphoma Biobank, which enrolls patients with lymphoma at the University of Chicago and prospectively administers serial patient-level HRQoL surveys utilizing the Functional Assessment of Cancer Therapy-General (FACT-G) and FACT-Lymphoma (FACT-LYM) instruments. Patients with indolent NHLs (follicular lymphoma, marginal zone lymphoma, and lymphoplasmacytic lymphoma) who were treated with frontline RI (4 doses of weekly rituximab) or BR (6 months of monthly BR) and who had completed HRQoL surveys at both of the following timepoints were included: within 6 months of treatment completion (timepoint 1) and 6-12 months after treatment completion (timepoint 2). Individual FACT-G scores were converted into EQ-5D utility index scores using a United States-based validated mapping algorithm (Teckle et al., Health Qual Life Outcomes, 2013). Cost-utility analysis was performed by trial-based methodology in which patient-level QALYs are estimated using area-under-the-curve (AUC) between timepoints 1 and 2. Incremental cost utility ratio (ICUR) was calculated utilizing cost and life years gained inputs of RI and BR from previous cost-effectiveness literature. All HRQoL scores for RI versus BR at both timepoints were compared with unpaired two-tailed t-tests.ResultsThere were 19 patients treated with RI and 13 patients treated with BR (Table 1). At timepoint 1, the BR cohort had significantly worse physical and emotional wellbeing on the FACT-G compared to the RI cohort, with emotional wellbeing significantly worse in the BR cohort at timepoint 2 (Table 2). EQ-5D utility index was stable at both timepoints for the RI cohort, and was initially lower in the BR cohort at timepoint 1 compared to RI but improved by timepoint 2 (Table 2). During the initial 12-month observation period after treatment completion, quality of life was higher for RI compared to BR (+0.02); however, when accounting for life years gained, the BR cohort had more QALYs (+1.53) (Table 3). Compared with RI, BR had an ICUR of $37,442.ConclusionsAlthough HRQoL was inferior in the BR cohort in the first year after treatment completion, particularly in the emotional wellbeing domain on FACT-G, BR induction conferred higher QALYs owing to more life years gained as compared to RI induction. Given a cost-effectiveness threshold of $100,000 in the United States (Vanness et al., Ann Intern Med, 2021), BR induction is likely to be cost effective when considering patient-reported HRQoL over the first year after treatment completion. The present analysis is limited by the small number of patients from which utility values at each timepoint were derived; however, calculation of QALYs using a database of prospectively-collected HRQoL data is feasible. Further incorporation of patient-reported outcomes into cost-utility analysis is warranted, particularly with larger datasets. [Display omitted] DisclosuresSmith: Alexion, AstraZeneca Rare Disease: Other: Study investigator; Celgene, Genetech, AbbVie: Consultancy.

Disease Burden and Pre-Transplant Health-Related Quality of Life in Pediatric Sickle Cell Disease Patients Receiving Nonmyeloablative HLA-Identical Sibling Donor Transplantation

Title: Disease Burden and Pre-transplant Health-related Quality of Life in Pediatric Sickle Cell Disease Patients Receiving Nonmyeloablative HLA-identical Sibling Donor TransplantationBackground: Sickle cell disease (SCD) is a hemoglobinopathy characterized by recurrent pain crises, severe organ damage, and reduced health-related quality of life (HRQL). Bone marrow transplantation (BMT) is a proven curative treatment for SCD that can improve both disease burden and HRQL. Despite the benefits, relatively few patients pursue a cure through BMT. The decision to receive a BMT is nuanced and likely to be influenced by a number of factors. One study by Roth et al. showed SCD patients interested in BMT had a higher HRQL than those uninterested in BMT, suggesting some variability between SCD patients pursuing transplant and the general SCD patient population. To date the factors that may affect pre-transplant HRQL of pediatric SCD patients remain unclear, particularly in the nonmyeloablative setting.Objective: To evaluate the impact of disease-burden, patient demographics, and hydroxyurea treatment on pre-transplant HRQL.Methods: Children and young adults with SCD set to receive a nonmyeloablative HLA-identical sibling donor BMT were administered HRQL surveys (PedsQL) in the six months leading up to the start of the conditioning regimen. Patients' disease history and demographic information were captured and analyzed for their relationship to HRQL. PedsQL parent surveys were used when patient surveys were unavailable. The mean difference in HRQL between groups were compared using an unpaired t test or linear regression.Results: 32 patients were enrolled onto this study. Six of the 32 patients HRQL were not included due to withdrawal, delay of transplant, or completion of the survey outside of window. The median age at the time of survey administration was 13.5 years (range 2-21). 57.7% of patients were male and 88% of patients had genotypes hemoglobin SS or Sβ 0thalassemia. 12% of patients had a history of overt stroke. 52% of patients were hospitalized while receiving HU treatment. 32% of patients received chronic blood transfusions leading up to transplant. The median number of hospitalizations in the two years leading up to transplant was 2 (range 0-10). 16.7% of patients met the AAPT diagnostic criteria for chronic pain. 75% of patients received HU treatment leading up to transplant. The median hemoglobin F percentage was 10.4. The median HRQL for all patients was 77.17 (range 36.9-98.91, SD +/- 15.99).Sickle cell genotype (P=0.88), history of overt stroke (P=0.79), hospitalization while receiving HU treatment (P=0.78), and the number of hospitalizations in the two years before transplant (P=0.39) were not associated with lower HRQL. History of chronic transfusion leading up to transplant approached statistical significance for lower HRQL (P=0.06). Older age (P=0.17) and female gender (P=0.89) were not associated with worse HRQL. Patients receiving HU treatment had significantly higher HRQL than patients not receiving HU (P=0.0034), with median PedsQL scores of 80.06 and 58.64, respectively. The date of survey administration was not associated with HRQL (P=0.40). The number of eligibility criteria met (P=0.63), chronic pain (P=0.17), total number of RBC transfusions (P=0.45), and pre-transplant hemoglobin (P=0.25) were not associated with HRQL.Discussion: Patient demographics and several markers of disease burden appear to have minimal impact on HRQL. Interestingly, the use of HU therapy was associated with significantly higher pre-transplant HRQL. The etiology of this finding is unclear given that disease burden was not associated with HRQL and warrants further investigation. The absence of association between disease burden and HRQL through current disease severity eligibility paradigms suggests that other factors may impact HRQL in SCD patients choosing a low toxicity nonmyeloablative BMT. DisclosuresNo relevant conflicts of interest to declare.

Using Economic Evaluation to Hasten Health Equity.

Achieving health equity has proven elusive for two reasons. First, most research has focused on changing the behavior of individuals; however, policies that address socioeconomic factors or change the context to facilitate healthy decisions tend to be more effective. Second, health disparity science and evidence are not consistently used to guide policy makers, even those seeking health equity. In this perspective, we discuss economic evaluation tools that researchers can use to assist decision-makers in conducting research or evaluating policy: self-reported health-related quality of life surveys and cost–benefit analysis evaluations informed with willingness to pay research and analyses.

AML-084: Feasibility Study Integrating Electronic Patient-Reported Outcomes (PROs) and Palliative Care for High-Risk Acute Myeloid Leukemia (AML) Patients

Context: Despite recent lower-intensity therapies that have improved outcomes for older AML patients, AML remains associated with poor prognosis as well as high symptom burden. While the benefits of early palliative care and electronic PROs have been well-described in oncology patients, neither have been well-studied in AML, and they have never been studied in combination. Objective: To evaluate the feasibility of a virtually mediated supportive care model utilizing both electronic PROs and palliative care for patients with AML being treated with lower-intensity therapy (NCT04885127). Design: This will be a prospective, single-arm, non-blinded trial with a year of enrollment and six months of follow-up. Setting: All patients will be enrolled at Stanford Comprehensive Cancer Center. Patients or Other Participants: We plan on enrolling 40 patients who are on first-line lower-intensity therapy for AML, defined as therapy that allows patients to receive care exclusively in the outpatient setting. Interventions: Patients who are enrolled will be referred to the subspecialty palliative care clinic for virtual consultation and monthly follow-up visits for 6 months. Patients will also be instructed on the use of Noona, a digital application that allows real-time, remote monitoring of PROs. Patients will be requested to fill out a Noona symptom questionnaire prior to each palliative care visit and will be prompted to maintain a weekly symptom diary, which will be available to both their primary leukemia and palliative care providers. They will also fill out health-related quality of life surveys, including Functional Assessment of Cancer Therapy – Leukemia (FACT-Leu), Hospital Anxiety and Depression Scale (HADS), Patient Health Questionnaire-9 (PHQ-9), and Satisfaction with Decision-Making Scale, at baseline, three, and six months. Main Outcome Measures: The primary outcome to be measured at completion of the study will be the feasibility of palliative care referral, defined as completion of the initial virtual consultation and at least 50% of the six scheduled monthly follow-up visits. Secondary outcomes will include the proportion of patients who complete the digital symptom questionnaires and the proportion of patients who complete their health-related quality of life surveys. Scores obtained from surveys will be used to generate hypotheses for future work. Despite recent lower-intensity therapies that have improved outcomes for older AML patients, AML remains associated with poor prognosis as well as high symptom burden. While the benefits of early palliative care and electronic PROs have been well-described in oncology patients, neither have been well-studied in AML, and they have never been studied in combination. To evaluate the feasibility of a virtually mediated supportive care model utilizing both electronic PROs and palliative care for patients with AML being treated with lower-intensity therapy (NCT04885127). This will be a prospective, single-arm, non-blinded trial with a year of enrollment and six months of follow-up. All patients will be enrolled at Stanford Comprehensive Cancer Center. We plan on enrolling 40 patients who are on first-line lower-intensity therapy for AML, defined as therapy that allows patients to receive care exclusively in the outpatient setting. Patients who are enrolled will be referred to the subspecialty palliative care clinic for virtual consultation and monthly follow-up visits for 6 months. Patients will also be instructed on the use of Noona, a digital application that allows real-time, remote monitoring of PROs. Patients will be requested to fill out a Noona symptom questionnaire prior to each palliative care visit and will be prompted to maintain a weekly symptom diary, which will be available to both their primary leukemia and palliative care providers. They will also fill out health-related quality of life surveys, including Functional Assessment of Cancer Therapy – Leukemia (FACT-Leu), Hospital Anxiety and Depression Scale (HADS), Patient Health Questionnaire-9 (PHQ-9), and Satisfaction with Decision-Making Scale, at baseline, three, and six months. The primary outcome to be measured at completion of the study will be the feasibility of palliative care referral, defined as completion of the initial virtual consultation and at least 50% of the six scheduled monthly follow-up visits. Secondary outcomes will include the proportion of patients who complete the digital symptom questionnaires and the proportion of patients who complete their health-related quality of life surveys. Scores obtained from surveys will be used to generate hypotheses for future work.

Development and validation of a parent-proxy health-related quality of life survey for Australian First Nations children

ObjectiveWithin Australia, Aboriginal and Torres Strait Islander (First Nations) populations perceive health and well-being differently to non-Indigenous Australians. Existing health-related quality of life (HR-QoL) measurement tools do not account for...

Good Days and Bad Days: Measuring Health-Related Quality of Life in People With Epilepsy

ObjectivesCost-effectiveness analyses typically require measurement of health-related quality of life (HRQoL) to estimate quality-adjusted life-years. Challenges with measuring HRQoL arise in the context of episodic conditions if patients are less likely—or even unable—to complete surveys when having disease symptoms. This article explored whether HRQoL measured at regular time intervals adequately reflects the HRQoL of people with epilepsy (PWE). MethodsFollow-up data from the Epilepsy Support Dog Evaluation study on the (cost-)effectiveness of seizure dogs were used in which HRQoL is measured in 25 PWE with the EQ-5D at baseline and every 3 months thereafter. Seizure count is recorded daily using a seizure diary. Regression models were employed to explore whether PWE were more likely to complete the HRQoL survey on a good day (ie, when seizures are absent or low in frequency compared with other days) and to provide an estimate of the impact of reporting HRQoL on a good day on EQ-5D utility scores. ResultsA total of 111 HRQoL measurements were included in the analyses. Regression analyses indicated that the day of reporting HRQoL was associated with a lower seizure count (P<.05) and that a lower seizure count was associated with a higher EQ-5D utility score (P<.05). ConclusionsWhen HRQoL is measured at regular time intervals, PWE seem more likely to complete these surveys on good days. Consequently, HRQoL might be overestimated in this population. This could lead to underestimation of the effectiveness of treatment and to biased estimates of cost-effectiveness.

Multiple Myeloma Symptom Burden, Perceived Control, and Quality of Life: Findings from the Cancer Experience Registry

Background: The 5-year survival rate for multiple myeloma (MM) has nearly doubled from 25% in the 1970s to 49% (NCI SEER). Survivors can experience complications and adverse effects from treatment, yet our understanding of the psychosocial effects of MM has not kept pace with therapeutic advances. The goals of this study were to explore how MM patients describe their quality of life compared to other US population groups and to identify cancer-related correlates of poorer health-related quality of life.Methods: 288 individuals with MM enrolled in the Cancer Support Community's online Cancer Experience Registry, provided sociodemographic and clinical history, and completed the Patient-Reported Outcomes Measurement Information System (PROMIS-29v1.0) health-related quality of life survey. We used multiple regression analysis to identify predictors of continuous T-scores for PROMIS subscales (physical and social functioning, anxiety, depression, fatigue, and sleep disturbance). Independent variables included physical symptom burden (daily interference from peripheral neuropathy, bone pain, GI toxicity, and infection) and perceived control over four areas: emotional responses to MM, physical side effects of MM and its treatment, follow-up care, and MM course (i.e., MM recurrence/progression or development of another cancer). Other covariates included sociodemographic factors (age, gender, income, and race) and clinical history (time since diagnosis, relapse, number and type of bone marrow transplants, kidney disease, currently receiving treatment, and type(s) of therapy received).Results: The sample was 54% female, 90% White, 6% Black. Mean age was 62 (SD=9) years; time since MM diagnosis was 4 (SD=4) years. 54% received one or two autologous transplants and 10% three or more; 5% received allogeneic transplant; 31% had not received a stem cell transplant. 85% had received chemotherapy, and 73% reported currently receiving treatment. 39% had experienced a relapse of MM, and 12% reported MM-related kidney disease. On average, PROMIS T-scores for MM patients were worse than national averages for the U.S. population (95% CI) for anxiety (50.5-52.8), fatigue (53.4-55.9), sleep disturbance (51.9-53.3), physical functioning (42.7-44.6), and social functioning (44.8-47.1). When considering individual responses, many MM respondents reported substantially worse quality of life (>1 SD) than the national average for physical functioning (37% of respondents), fatigue (34%), social functioning (29%), anxiety (20%), depression (17%), and sleep disturbance (6%). Only 27% felt they had control (moderate, a great deal or complete) over the course of MM; 48% felt control over the physical side effects of MM; 84% felt they had control over their emotional responses to MM; and 88% over the follow-up care they receive.All regression models predicting PROMIS subscales were significant (R2 = .15 to .44, p s< .001). Greater symptom burden was associated with worse scores on all PROMIS subscales (semipartial r s = .23 to -.48, p s < .001). Perceiving less control over the physical side effects of MM and its treatment was associated with worse physical functioning (semipartial r=.11, p < .05). Perceiving less control over emotional responses to MM was associated with worse anxiety, depression, fatigue, sleep disturbance, and social functioning (semipartial r s = .17 to -.50, p s < .01). Additionally, Black race was associated with worse physical functioning (semipartial r= -.11, p < .05). Currently receiving treatment was associated with fatigue and sleep disturbance (semipartial r s = .13 to .14, p s < .01), and having received chemotherapy was associated with worse social functioning (semipartial r= -.13, p < .02). Having had a relapse of MM was associated with anxiety and worse social functioning (semipartial r s = .11 to -.12 p s < .05).Conclusion: Significant proportions of MM survivors experience worse health-related quality of life compared to the general U.S. population. Symptom burden, as well as a sense of less control over physical and emotional symptoms, were associated with poorer quality of life. These results suggest the need for more comprehensive symptom management efforts for people with MM throughout survivorship care, including increased access to palliative and supportive care services. DisclosuresLeBlanc:Boehringer Ingelheim: Membership on an entity's Board of Directors or advisory committees; Helsinn Therapeutics: Consultancy, Honoraria; AstraZeneca: Research Funding; Pfizer: Consultancy; American Cancer Society: Research Funding; Cambia Health Foundation: Research Funding; Otsuka: Membership on an entity's Board of Directors or advisory committees; Flatiron Health: Consultancy; Janssen: Honoraria; Seattle Genetics: Research Funding; Celgene: Honoraria. Buzaglo:Pharmacyclics, Inc: Research Funding; Pfizer Oncology: Research Funding; Novartis: Research Funding; Janssen Biotech, Inc: Research Funding; Genentech, Inc: Research Funding; Eli Lilly and Company: Research Funding; Celgene Corporation: Research Funding; Bristol-Myers Squibb: Research Funding; Boehringer Ingelheim: Research Funding; Bayer: Research Funding; Amgen Corporation: Research Funding; AbbVie: Research Funding; Takeda Oncology: Research Funding.

Monitoring Health Care Workers at Risk for COVID-19 Using Wearable Sensors and Smartphone Technology: Protocol for an Observational mHealth Study.

BackgroundHealth care workers (HCWs) have been working on the front lines of the COVID-19 pandemic with high risks of viral exposure, infection, and transmission. Standard COVID-19 testing is insufficient to protect HCWs from these risks and prevent the spread of disease. Continuous monitoring of physiological data with wearable sensors, self-monitoring of symptoms, and asymptomatic COVID-19 testing may aid in the early detection of COVID-19 in HCWs and may help reduce further transmission among HCWs, patients, and families.ObjectiveBy using wearable sensors, smartphone-based symptom logging, and biospecimens, this project aims to assist HCWs in self-monitoring COVID-19.MethodsWe conducted a prospective, longitudinal study of HCWs at a single institution. The study duration was 1 year, wherein participants were instructed on the continuous use of two wearable sensors (Fitbit Charge 3 smartwatch and TempTraq temperature patches) for up to 30 days. Participants consented to provide biospecimens (ie, nasal swabs, saliva swabs, and blood) for up to 1 year from study entry. Using a smartphone app called Roadmap 2.0, participants entered a daily mood score, submitted daily COVID-19 symptoms, and completed demographic and health-related quality of life surveys at study entry and 30 days later. Semistructured qualitative interviews were also conducted at the end of the 30-day period, following completion of daily mood and symptoms reporting as well as continuous wearable sensor use.ResultsA total of 226 HCWs were enrolled between April 28 and December 7, 2020. The last participant completed the 30-day study procedures on January 16, 2021. Data collection will continue through January 2023, and data analyses are ongoing.ConclusionsUsing wearable sensors, smartphone-based symptom logging and survey completion, and biospecimen collections, this study will potentially provide data on the prevalence of COVID-19 infection among HCWs at a single institution. The study will also assess the feasibility of leveraging wearable sensors and self-monitoring of symptoms in an HCW population.Trial RegistrationClinicalTrials.gov NCT04756869; https://clinicaltrials.gov/ct2/show/NCT04756869International Registered Report Identifier (IRRID)DERR1-10.2196/29562

The relationship between health-related quality of life, perceived social support, and social network size in African Americans with aphasia: a cross-sectional study

ABSTRACT Stroke significantly impairs health-related quality of life (HRQL). Stroke survivors with aphasia (SWA) experience lower HRQL than stroke survivors without aphasia (SSA) as a result of poorer communication and social functioning. The extent to which aphasia influences HRQL in African-Americans and the components of social functioning that are most important to HRQL warrants further exploration. There were two main objectives of this paper. The first was to survey HRQL domains of communication, physical, mental/emotional, role, and social functioning in African American SWA and SSA. The second was to examine if social support and social network predicted HRQL in SWA. A total of 39 African American adults (62.4 ± 11.10) participated in this descriptive cross-sectional case control study. Patient-reported outcome measures were used to assess HRQL, perceived social support, and social network in SWA, SSA, and normal-aging healthy controls (NAH). Data analysis included an ANOVA and moderator regression to determine if social support or social network predicted HRQL in SWA. SWA reported a significantly lower overall HRQL (p = <.000) than NAH adults. Communication HRQL was the hallmark difference found between SWA and SSA (p = <.000). Social support and social network were relatively similar among all three groups. However, social support and social network did not predict HRQL in SWA. Findings from this study suggest that social HRQL continues to be significantly lower in SWA; however, social support and social network factors do not drive differences among African-Americans. Moreover, communication HRQL remains the hallmark difference between SWA and SSA.

Patient Reported Outcome Measures of Health-Related Quality of Life and Asthenia after Thyroidectomy

After thyroidectomy some patients experience a chronic fatigue syndrome called asthenia. The purpose of this study was to determine the post-operative health related quality of life (HRQOL) and risk of asthenia in patients undergoing thyroidectomy. A single institution prospective observational cohort study of adults undergoing thyroidectomy from September 2016 to July 2019 with four HRQOL surveys: preoperative baseline, 2 wk-, 6 mo- and 12 mo-postoperatively. Patients were surveyed using the Short Form 36 version 2 and Brief Fatigue Inventory. Asthenia was defined as Brief Fatigue Inventory > 60 at 12 mo. HRQOL was compared between patients undergoing thyroid lobectomy (TL) or total thyroidectomy (TT) with benign (-B) or malignant (-Ca) final pathology. A total of 182 patients were included: 67 (37%) with TL-B, 32 (17%) with TL-Ca, 40 (22%) with TT-B, and 43 (24%) with TT-Ca. The incidence of asthenia was 42% for TT and 4% for TL. In the TL-B group, 2 patients (3%) developed asthenia, compared with 2 patients (6.25%) in the TL-Ca group, 14 patients (35%) in the TT-B group, and 21 (48.8%) in the TT-Ca group (P=0.0001). The odds ratio of asthenia for TT compared to TL was 10.4 (95% CI 3.86-28.16) and for patients with malignancy compared to benign disease was 2.05 (95% CI 1.17-3.61). Patients undergoing TT have a higher risk of developing asthenia than those undergoing TL, particularly if the final pathology shows malignancy.

The effects of pre‐dialysis blood pressure targets on prognosis and health‐related quality of life in haemodialysis patients

The aim of the study is to investigate the effects of pre-dialysis blood pressure targets on health-related quality of life and prognosis and to determine the optimal target for pre-dialysis blood pressure in haemodialysis patients. A total of 58 haemodialysis patients undergoing dialysis for more than 3months were enrolled in the study from 1 January 2018 to 31 December 2018. The subjects were divided into two groups according to their pre-dialysis blood pressure: a standard target group (pre-dialysis systolic blood pressure of 110-140mmHg) and a relaxed target group (pre-dialysis systolic blood pressure of 155-165mmHg). The Quality Metrics SF-36 survey instrument was used to assess health-related quality of life in the study participants. In addition, general clinical data and biochemical indicators including heart rate, respiration rate, blood pressure and ultrafiltration volume and rate during dialysis were observed and recorded. Patients were followed-up for 12months, and prognostic data were recorded. Death was regarded as the endpoint. Scores on the SF-36 in the standard target group were significantly higher than those in the relaxed target group, with the exception of the role-emotional (RE) and mental health (MH) dimensions. At the end of the study, the number of mortality events in the relaxed target group was higher than in the standard target group. There were no other significant differences between the two groups. The scores from the health-related quality of life survey were higher in standard target group, but no differences in mortality risk between the two groups were observed.

Socio-ecological perspective on factors influencing acute recovery of younger stroke survivors: A mixed methods study.

Stroke is affecting an increasing number of young and middle-aged adults. Given the substantial diversion from anticipated life trajectories that younger stroke survivors experience as a result of their stroke deficits, their health-related quality of life (HRQOL) is likely to be negatively impacted during the immediate post-acute recovery period. The aim of this study was to generate a comprehensive understanding of the influences on HRQOL and acute recovery during the first three months following stroke for younger adults using a socio-ecological perspective. Longitudinal, convergent mixed methods design. HRQOL survey data, assessed using the Patient Generated Index (N=31), and qualitative interview data about survivors' recovery experiences (N=20) were collected. Simple linear regression and effect size results were integrated with themes and sub-themes identified from conventional content analysis using joint data displays. Depression and fatigue negatively affected recovery at the individual level. At the family and societal level, family functioning, social support including being married, having insurance, working, adequate income and being unemployed post-stroke all positively impacted recovery. Qualitative findings revealed determination, coping, and accessing healthcare to positively affect recovery though a meta-inference could not be drawn as no quantitative data addressed these concepts. A variety of factors intersecting across socio-ecological levels were perceived by young stroke survivors to influence acute recovery experiences and outcomes. This study identified individual-, family- and societal-level factors in younger adults' environments that may affect the acute stroke recovery experience. Findings underscore the need for research and clinical approaches that consider environmental factors at multiple levels of influence when supporting stroke recovery for younger adults.

Stay Slim or Get Fat?: An Examination of the "Jolly Fat" Effect in Chinese Older Adults.

PurposeThe association between body mass index (BMI) and health-related quality of life (HRQOL) has not been verified neither in China nor in any other Asian country. This study aimed to examine the association between BMI and HRQOL in the Chinese older adults population.MethodsA total of 5018 older adults from the China’s Health-Related Quality of Life Survey for Older Adults 2018 was included in this study. The HRQOL was measured by the Chinese version of the World Health Organization Quality of Life Instrument-Older Adults Module (WHOQOL-OLD). Multiple linear regression analysis was used to explore the associations between BMI and HRQOL among the older adults in rural, urban, and total samples.ResultsAfter adjusting all the confounders, compared with normal weight group, underweight was negatively correlated with the total scores of HRQOL among the older adults in rural (B= −2.310, p < 0.01), urban (B= −1.019, p < 0.001), and total samples (B= −2.351, p < 0.001), whereas overweight was positively associated with the total scores of HRQOL among the older adults in rural samples (B= 0.888, p < 0.05). The results showed that obesity was not associated with the total scores of HRQOL among the older adults in rural (B= −1.214, p > 0.05), urban (B= −0.074, p > 0.05), and total samples (B= −1.461, p > 0.05).ConclusionThis study suggests that obese Chinese older adults did not show a better quality of life than those of normal weight. But this result does not deny the “jolly fat” hypothesis entirely, as the overweight older adults from rural areas showed better HRQOL. Moreover, underweight older people show a poorer HRQOL. The relationship between BMI and HRQOL in the older adults needs to be differentiated according to different characteristics of the population.

Health-related quality of life of middle-aged and elderly people with hypertension: A cross-sectional survey from a rural area in China.

ObjectiveTo evaluate health-related quality of life (HRQoL) of middle-aged and elderly people with hypertension in Enshi, China, and to explore the important correlates defining HRQoL.MethodsFrom April through July 2018, a self-monitoring intervention program for hypertension control was implemented in a remote area of central China. Participants completed a cross-sectional survey which included demographic characteristics, the Health-related Quality of Life Survey, and the Pittsburgh Sleep Quality Index Survey. Univariate analysis was performed by analysis of variance, and multiple linear regression analysis was used to analyze the influencing factors of HRQoL in middle-aged and elderly hypertensive patients. In the multivariate analysis, the variables with P≤0.05 in the single factor analysis were combined with the professional significance to establish a multiple linear regression model.ResultsInformation from 500 participants was available for analysis. Among them, the scores of PCS and MCS was 31.66 ± 9.50 and 41.38 ± 10.69, respectively. Multivariable regression analyses showed that higher education and sleep quality, and moderate physical activity (30 minutes for at least five days a week) had a positive influence on PCS scores. Higher monthly family income (3,000–5,000 ¥) and sleep quality, regular tea-drinking, having 30 minutes of moderate physical activity at least five days a week were positively associated with MCS scores.ConclusionThe overall HRQoL for rural middle-aged and elderly hypertensive patients in Xuan’en county of Hubei province was poor. Effective relevant measures for the above factors were urgently needed to improve the quality of life for the elderly in rural areas. Awareness of these relevant factors could help health care professionals provide better supportive care.

Validity of the Malay EQ-5D-3L in the Malaysian Transfusion-Dependent Thalassemia Population

ObjectiveThe objective of this study was to examine the cross-sectional convergent and known-group validity of the Malay-language EQ-5D-3L instrument in children and adults with transfusion-dependent thalassemia (TDT). MethodsA cross-sectional health-related quality of life survey involving TDT patients from 12 different treatment centers across Malaysia was conducted using the Malay PedsQL 4.0 Generic Core Scales and the Malay EQ-5D-3L questionnaire. Patients with non–TDT and other hemoglobinopathies were excluded. Convergent, discriminant, and known-group validity of the EQ-5D-3L was assessed against the PedsQL 4.0 Generic Core Scales in children. In the adult population, known-group validity of the EQ-5D-3L was assessed using an a priori hypothesis between patients’ demographic characteristics and health outcomes obtained from literature. ResultsA total of 370 children and 225 adults were sampled. The mean (standard deviation) EQ-5D-3L scores of the children were 0.892 (0.082) and the adults were 0.887 (0.085). Convergent and discriminant validity was identified when correlated with the PedsQL domain in children. In both groups, known-group validity was evident when comparing groups of patients with reported problems to the group of patients with no reported problems on the EQ-5D-3L domains based on the a priori hypothesis derived from literature. ConclusionThis study found convergent, discriminant, and known-group validity of the Malay EQ-5D-3L in a population-based sample of patients with TDT. Hence, the instrument is valid for the assessment of health-related quality of life in children and adults with TDT in Malaysia.

Development of otology specific outcome measure: Ear Outcome Survey-16 (EOS-16)

PurposeAn important outcome measure of patient care is the impact on the patient’s health-related quality of life (HRQoL). Current ear-specific HRQoL instruments are designed for one diagnosis and emphasize different subdivisions such as symptoms, hearing problems, psychosocial impact, and the need for care. The optimal length of the recall period has not been studied. For these reasons, a new survey is needed that would cover most chronic ear diseases. MethodsA preliminary 24-item survey (EOS-24) was created. Untreated adult patients (included n = 186) with one of seven different chronic otologic conditions from all university hospitals in Finland were recruited to respond to EOS-24 and the 15D general HRQoL instrument. The recruiting otologists evaluated the severity of the disease and the disability caused by it. A control group was recruited. Based on the patients’ responses in different diagnosis groups, the items were reduced according to pre-defined criteria. The resulting survey was validated using a thorough statistical analysis. ResultsThe relevance and necessity of the original 24 items were thoroughly investigated, leading to the exclusion of 8 items and the modification of 1. The remaining 16 items were well-balanced between subdivisions and were useful in all seven diagnosis groups, thus constituting the final instrument, EOS-16. The most suitable recall period was three months. ConclusionsEOS-16 has been created according to the HRQoL survey guidelines with a versatile nationwide patient population. The survey has been validated and can be used for a wide range of chronic ear diseases as a HRQoL instrument.

Meaning and Status of Health-related Quality of Life Recognized by Medical Professionals: a Qualitative Study.

BackgroundMedical professionals must maintain their health to provide quality medical care to patients safely. However, the health-related quality of life of medical professionals is a complex issue that currently lacks a standardized evaluation approach. Therefore, the purpose of this study was to identify their perceptions of the health-related quality of life of medical professionals and explore ways to measure their quality of life as accurately.MethodsThis study explored the subjective health status and well-being of Korean medical professionals by conducting three focus group discussions (FGDs) with 12 physicians and 6 nurses (November to December 2019). In the FGD, we elicited participants' opinions on existing health-related quality of life measurement tools. Also, we analyzed transcribed data through content analysis.ResultsParticipants in this study noted the ambiguity in the current definitions of health provided by the World Health Organization. They shared various problems of their health, mainly concerning fatigue and sleep disorders due to their work pattern. Also, participants shared anxiety, burden, and fear of negative consequences due to the complexity of their work. Participants voiced the necessity of a questionnaire on health-related quality of life that reflects the working lives of medical professionals.ConclusionMedical professionals in Korea were mainly criticizing about health-related quality of life problems caused by their work characteristics. The results of this study will provide valuable information for future health-related quality of life surveys targeting medical professionals in Korea, and also help to determine the method for monitoring the health-related quality of life for health professionals. In addition, the aspects and items identified by medical professionals as important for their health-related quality of life may be used as a basis for developing a new health-related quality of life measurement tools for medical professionals.

Clinical outcomes, quality of life, and costs evaluation of peritoneal dialysis management models in Shanghai Songjiang District: a multi-center and prospective cohort study

Background: The new Family-Community-Hospital (FCH) three-level comprehensive management aimed to improve the efficiency and scale of peritoneal dialysis (PD) to meet the increased population of end-stage renal disease (ESRD). Our study focused on the clinical outcomes, quality of life, and costs evaluation of this model in a multi-center and prospective cohort study. Methods: A total of 190 ESRD patients who commenced PD at Shanghai Songjiang District were enrolled. According to different PD management models, patients were divided into the Family-Community-Hospital three-level management model (n = 90) and the conventional all-course central hospital management model (n = 100). The primary outcome was clinical outcomes of PD. The secondary outcomes were health-related quality of life (HRQOL) and medical costs evaluation. Results: Compared to conventional management, community-based FCH management achieved a similar dialysis therapeutic effect, including dropout rate (p = 0.366), peritonitis rate (p = 0.965), patient survival (p = 0.441), and technique survival (p = 0.589). Follow-up data showed that similar levels of the renal and peritoneal functions, serum albumin, cholesterol and triglyceride, PTH, serum calcium, and phosphorus between the two groups (all p > 0.05). HRQOL survey showed that the FCH management model helped to improve the psychological status of PD patients, including social functioning (p = 0.006), role-emotional (p = 0.032), and mental health (p = 0.036). FCH management also reduced the hospitalization (p = 0.009) and outpatient visits (p = 0.001) and saved annual hospitalization costs (p = 0.005), outpatient costs (p = 0.026), and transport costs (p = 0.006). Conclusions: Compared with conventional management, community-based FCH management achieved similar outcomes, improved psychological health, reduced medical budgets, and thus had a good social prospect.

Health-Related Quality of Life among Elderly Population of Bangladesh

Introduction: Elderly population in Bangladesh is one of the largest in the world in term of absolute number and ageing is an emerging problem. Elderly are at risk from non-communicable diseases as well as mental problems and health-related quality of life (HRQoL) affects in urban and rural elderly.&#x0D; Objective: To find out and compare HRQoL in urban and rural elderly population of Bangladesh.&#x0D; Materials and Methods:A comparative cross-sectional study was carried out to compare HRQoL in urban and rural elderly. This was a two samples study; 130 each from urban and rural. Total 260 elderly were selected conveniently. Data were collected through face to face interview using a pre-tested semi structured questionnaire of SF-36 v2 HRQoL survey. This study was carried in urban elderly residing in Ward number 3, Race Course, Cumilla City Corporation and in rural elderly residing in Noapuskuni Village of Babutipara Union, Muradnager Upazila, Cumilla. This one-year study was conducted from 15 July 2017 to 14 June 2018.&#x0D; Results: Majority of the elderly were Muslim (91.5%), female (53.5%), married (59.6%) and from joint family (91%). The mean ± SD age of elderly was 69.26±6.337 years and mean ± SD monthly family income was Tk. 16561.54±9192.076. SF- 36 v2 HRQoL scale; a licensed software-based survey tool was used measure the health-related quality of life of elderly. Most of the elderly were found with average physical component summary (PCS) (53.1%) and mental component summary (MCS) (50.8%) of HRQoL. Age had significant negative correlation with PCS (p&lt;0.001) and MCS (p&lt;0.001) in urban and rural elderly. Education level of urban and rural elderly had significant positive correlation with PCS (p&lt;0.01) and MCS (p&lt;0.01). Marital status of urban and rural elderly had significant negative correlation with PCS (p&lt;0.001) and MCS (p&lt;0.001) of HRQoL. Among the rural respondents, the mean ± SD of PCS of male was 43.79±5.766 and female was 41.14±6.860. The difference was statistically significant (p&lt;0.05). Mean score of PCS of urban and rural respondents were 45.68±6.366 and 42.43±6.467 respectively. This difference was statistically significant (p&lt;0.001). Mean scores of MCS of urban and rural respondents were 43.96±4.921 and 42.56±7.028 respectively. This difference was not statistically significant (p&gt;0.05).&#x0D; Conclusion: Most of the elderly had average level of health-related quality life. Rural female elderly had significantly lower physical health of HRQoL than that of rural male elderly. Physical dimension of HRQoL of rural elderly was significantly lower than that of urban elderly.&#x0D; JAFMC Bangladesh. Vol 15, No 2 (December) 2019: 161-164

Health-Related Quality of Life in Patients with Philadelphia-Negative Myeloproliferative Neoplasms: A Nationwide Population-Based Survey in Denmark.

Simple SummaryThe aim of this research was to investigate the health-related quality of life (HRQoL) in patients with Philadelphia-negative myeloproliferative neoplasms (chronic blood cancers) in Denmark. A nationwide questionnaire survey covering functioning, symptom burden, symptom profile, QoL, and lifestyle was performed. Patients registered in the National Patient Register with a diagnosis of Philadelphia-negative myeloproliferative neoplasm were invited. A total of 2228 patients participated in the survey and these could be divided into groups of participants with different subtypes of Phildelphia-negative myeloproliferative neoplasms. The HRQoL across groups of participants with different subtypes of the disease was compared, and the HRQoL of all participants and the general population was compared in order to investigate for a potential difference. The participants reported their HRQoL to be inferior to the general population, but the difference was minor. The differences in HRQoL across groups of participants with different subtypes of the disease were subtle. Fatigue and sexual problems were prevalent and burdensome. Participants reported a slightly healthier lifestyle than the general population. Understanding HRQoL of these patients is a necessity to be able to provide the best treatment and rehabilitation activities. Previous studies have clarified that many patients with Philadelphia-negative myeloproliferative neoplasms (MPNs) have burdensome symptom profiles and accordingly impaired functioning and quality of life (QoL). In Denmark, all MPN patients are affiliated with public hospitals and because of a healthcare system financed by taxpayers these patients do not have any financial costs related to the hematological disease. Diagnoses are recorded for all patients in hospitals, and diagnosis codes are communicated to the National Patient Register (NPR). Owing to this, it was possible to contribute to the elucidation of Philadelphia-negative MPN patients’ health-related quality of life (HRQoL), by conducting a nationwide, population-based, cross-sectional HRQoL survey of these patients with cost-free access to the best available, suitable medical treatment. The survey contained validated questionnaires covering functioning, symptom burden, symptom profile, QoL, and additional questions on lifestyle. Information on comorbid diagnoses was obtained from the NPR. The participants’ HRQoL was compared to the general population. Moreover, differences in HRQoL across essential thrombocythemia, polycythemia vera, myelofibrosis, and unclassifiable MPN participants were investigated, adjusted for age, sex, comorbidity, and lifestyle. To the best of our knowledge this is the first survey of HRQoL in patients with unclassifiable MPN. A total of 2228 Philadelphia-negative MPN patients participated. The participants reported their HRQoL to be inferior to the general population, but the difference was minor. The differences in HRQoL across groups of participants with different MPN subtypes were subtle. Fatigue and sexual problems were prevalent and burdensome. Overall, participants reported a slightly healthier lifestyle compared to the general population.