Health-related Quality Of Life Domains Research Articles

Health-related quality of life in adults with hematological cancer: a 2023 cross-sectional survey from Qatar.

Hematological cancers impose a complex burden on individuals, affecting their physical health and mental and emotional well-being. This study evaluated the health-related Quality of Life (HRQOL) and its determinants among adults with hematological cancers in Qatar in 2023. A cross-sectional study used a validated structured questionnaire conducted among adult patients diagnosed with hematological cancers. All adult patients who attended The National Centre for Cancer Care and Research (NCCCR) in Qatar during the Data collection period (January to March 2023) and agreed to participate were included in the study. A total of 257 participants were enrolled in the study. The highest median (IQR) score of the HRQOL domain was observed in the functionating score of 90.6 (13.8), followed by the global health score of 83.3(25. 0). The median (IQR) of the symptoms burden score was 07.4(12.3). Gender significantly affects HRQOL, with males reporting better functioning and lower symptom burden than females. Employment status is positively associated with functioning scores. Regular exercise correlates with higher global health and functioning scores and lower symptom burden, while depressive symptoms are linked to poorer HRQOL outcomes. Patients experiencing cancer recurrence or active disease report lower global health and functioning scores and higher symptom burden. Treatment modalities such as chemotherapy and bone marrow transplant (BMT) timing also influence HRQOL, with recent treatment recipients showing lower global health and higher symptom burden scores. Depressive symptoms were the primary factor, lowering the global health score by 15.2%. Regarding the low functioning score predictors, female gender, depressive symptoms, and cancer recurrence emerged as significant predictors of the low functioning score. Furthermore, Regular exercise increased the functioning score by 03.4 units (p-value=0.018). Finally, Multiple linear regression analysis reinforced the significance of depressive symptoms, active disease status, and recurrence within the past five years as substantial predictors of higher symptom scores. The study emphasizes the profound impact of depressive symptoms on all aspects of Health-Related Quality of Life (HRQOL), mainly affecting global health. It highlights the positive role of regular exercise in enhancing global health, functioning, and symptom burden scores.

Extraarticular manifestations of juvenile idiopathic arthritis and their impact on health-related quality of life.

The objective of this study is to investigate extraarticular manifestations (EAMs) in patients with juvenile idiopathic arthritis (JIA) and assess their impact on health-related quality of life (HRQoL) among these patients. This cross-sectional analytic study was carried out on 117 patients with JIA. EAMs were identified clinically by history and examination. Sicca symptoms, peripheral neuropathy, enthesitis, and skin lesions were picked up during clinical examination. Pulmonary involvement was evaluated by high-resolution CT chest. Patients were assessed by abdominal ultrasonography to assess the size of liver and spleen. Atlantoaxial subluxation was evaluated by cervical spine x-rays. Patients were evaluated by Pediatric Quality of Life Inventory-4 (PedsQL-4) and PedsQL-3 arthritis module. The median age of patients was 14years with a median disease duration 4years, 82.9% were females. Of the studied 117 JIA patients, 85 patients (72.6%) had at least one EAM. Persistent fatigue (51.3%) was the most prevalent EAM, followed by recurrent skin rash (16.2%), enthesitis (15.4%), recurrent fever (13.7%), and uveitis (12%). Patients with EAMs scored significantly lower in physical functioning (p = 0.001), emotional functioning (p < 0.001), social functioning (p = 0.005), and school functioning (p = 0.001). Regarding PedsQL arthritis module, patients with EAM had also significantly lower scores than did patients without EAM on the domains of pain and hurt (p < 0.001), daily activities (p = 0.008), and worry (p = 0.001). EAMs are prevalent among JIA patients and have a negative impact on their HRQoL. So, early identification and treatment are highly recommended. Key Points • A large percentage of JIA patients experienced at least one extraarticular manifestation (EAM). • Persistent fatigue and recurrent skin rash are the most prevalent EAMs in JIA patients. • JIA patients with EAMs have worse scores in almost all domains of HRQoL.

#376 Self-efficacy, social support and hemodiafiltration are independently associated with better Self-Reported Health Status over time

Abstract Background and Aims Patients with kidney disease receiving dialysis are a highly vulnerable population. Psychosocial determinants of Self-Efficacy (SE) and Social Support (SS) have been suggested as potentially important outcomes for people with end stage kidney disease. We investigated whether these variables could explain differences in Health-Related Quality of Life (HRQL) outcome domains over time independently or in interaction with treatment modality of high-flux hemodialysis (HD) versus high-dose hemodiafiltration (HDF). Method HRQL in 1264 participants from the international multi-centre, prospective, randomized, open label, controlled CONVINCE trial were assessed, using screening and quarterly follow-up data up to 24 months. Measures included the MOS Social Support Scale, General Self-Efficacy Scale, and PROMIS short forms for fatigue, physical function, pain interference and intensity, sleep disturbance, anxiety, cognitive function, depression, ability to participate in social roles. SE, SS and interactions with modality were included as independent variables and HRQL domains as dependent variables in a linear mixed effects model with random intercept and slope for SE and SS. Results Participants were 20-92 (M=62.33, SD=13.50) years old, 62.9% were male. Linear mixed effect regression models showed significant main effects for self-efficacy (β = −0.15-1.09, all p &amp;lt; .0001) on all HRQL domains. Significant SE × time interactions were found for all variables (β = −0.02-0.04, all p &amp;lt; .01) but pain intensity. Main effects for SS were found for cognition (β = 0.31, p = .00) and sleep disturbance (β = −0.21, p = .00). A significant SS × time interaction was found for anxiety (β = 0.01, p = .02) and sleep disturbance (β = 0.02, p = .00). Plots for these associations can be found in Figs 1 and 2. Marginal means were plotted and 25%, 50% and 75% quantiles were used to separate the different levels of SE and SS. There were no significant interactions between treatment modality (HDF vs. HD) and SE/SS. Conclusion Our results indicate that higher SE and better SS are independently associated with higher HRQL of dialysis patients over time, showing no significant interactions with HDF. SE had the largest effects on HRQL. This bears the chance to develop targeted psychosocial interventions to improve health outcomes when introducing new therapy options for patients. However, patients achieving higher HRQL over the course of the treatment may also experience higher SE and SS over time. Future research should include longitudinal assessments on these psychosocial determinants to evaluate their effect further.

#2320 The impact of interventions for people with chronic kidney disease on health-related quality of life: a systematic review

Abstract Background and Aims Health-related quality of life (HRQoL) is poorer for those with chronic kidney disease (CKD) than the general population and worsens as CKD progresses. Evidence is mixed as to which interventions improve HRQoL for those with CKD, and HRQoL is often under-reported in randomised controlled trials where it is most commonly a secondary outcome. Reviews including HRQoL as an outcome have thus far focused on the impact per intervention, therefore we aimed to ascertain which interventions, of any type, have an impact on HRQoL outcomes for those with non-dialysis dependent CKD (NDD-CKD). Method The protocol was prospectively registered on PROSPERO (CRD42022364474) and PRISMA guidelines were followed. Inclusion criteria were randomised controlled trials in an NDD-CKD population (excluding transplant recipients), any intervention type, usual care/placebo comparators, using validated and reported HRQoL outcomes measures. Databases searched were Embase, Medline, PsychINFO, CINAHL plus, Web of Science, PubMed, and Google Scholar, with reference searching of included studies. Reports were independently screened by two researchers who also performed data extraction and quality assessment (using the Cochrane Risk of Bias 2.0 tool). Synthesis was undertaken using Synthesis without Meta-analysis (SWiM) methods. Conversion to one-sided p-values, synthesising outcomes in albatross plots and combining p-values via Fisher's method was performed using the metap package in R. HRQoL measures were broken down into physical, mental, kidney disease symptoms, adverse effects of kidney disease, burden of kidney disease, overall kidney disease, and overall HRQoL domains for analysis. Results Searches yielded 8983 records, and 39 studies met inclusion criteria, with a total of 11,940 participants. Nine groups were formed based on type of intervention, with data synthesis possible in the eight groups with more than one study (Fig. 1). 26 (66%) studies were rated as having high risk of bias, largely due to frequent lack of blinding and HRQoL being a patient reported outcome. 37 studies had sufficient data for presentation in albatross plots (Fig. 2). Using combined p-values for all HRQoL outcomes in each group of studies, benefit to HRQoL in at least one study was shown for education interventions (p &amp;lt; 0.001, seven studies, none with low risk of bias), exercise interventions (p &amp;lt; 0.001, eight studies, all with high risk of bias), medications to treat CKD-related anaemia (p &amp;lt; 0.001, eight studies, four with low risk of bias), nutritional interventions (p &amp;lt; 0.001, four studies, all with high risk of bias) and weight loss interventions (p &amp;lt; 0.001, two studies, one with low risk of bias). No benefit to HRQoL was shown for medications aimed at slowing CKD progression (p = 0.492, five studies), medications for depression (p = 0.266, two studies) and medications to treat acidosis (p = 0.99, two studies). Conclusion This review identified several interventions with evidence of benefit to HRQoL for people with NDD-CKD, including medications to treat anaemia and weight loss interventions. Studies of education, exercise and nutritional interventions showed potential benefit, but with high risk of bias. Further high-quality randomised controlled trials of interventions for people with NDD-CKD should include and report HRQoL outcomes, in addition to targeting potentially modifiable determinants of HRQoL in these groups.

Association of optimism and social support with health-related quality of life among Australian women cancer survivors - A cohort study.

Large-scale studies investigating health-related quality of life (HRQL) in cancer survivors are limited. This study aims to investigate HRQL and its relation to optimism and social support among Australian women following a cancer diagnosis. Data were from the Australian Longitudinal Study on Women's Health, a large cohort study (n=14,715; born 1946-51), with 1428 incident cancer cases ascertained 1996-2017 via linkage to the Australian Cancer Database. HRQL was measured using the Short Form-36 (median 1.7 years post-cancer-diagnosis). Multivariable linear regression was performed on each HRQL domain, separately for all cancers combined, major cancer sites, and cancer-free peers. Higher optimism and social support were significantly associated with better HRQL across various domains in women with and without a cancer diagnosis (p<0.05). Mean HRQL scores across all domains for all cancer sites were significantly higher among optimistic versus not optimistic women with cancer (p<0.05). Adjusting for sociodemographic and other health conditions, lower optimism was associated with reduced scores across all domains, with greater reductions in mental health (adjusted mean difference (AMD)=-11.54, p<0.01) followed by general health (AMD=-11.08, p<0.01). Social support was less consistently related to HRQL scores, and following adjustment was only significantly associated with social functioning (AMD=-7.22, p<0.01) and mental health (AMD=-6.34, p<0.01). Our findings highlight a strong connection between optimism, social support, and HRQL among cancer survivors. Providing psychosocial support and addressing behavioral and socioeconomic factors and other health conditions associated with optimism and social support may improve HRQL.

Impact of Real-World Outpatient Cancer Rehabilitation Services on Health-Related Quality of Life of Cancer Survivors across 12 Diagnosis Types in the United States.

Compared to adults without cancer, cancer survivors report poorer health-related quality of life (HRQOL), which is associated with negative treatment outcomes and increased healthcare use. Cancer-specialized physical and occupational therapy (PT/OT) could optimize HRQOL; however, the impact among survivors with non-breast malignancies is unknown. This retrospective (2020-2022), observational, study of medical record data of 12 cancer types, examined pre/post-HRQOL among cancer survivors who completed PT/OT. PROMIS® HRQOL measures: Global Health (physical [GPH] and mental [GMH]), Physical Function (PF), and Ability to Participate in Social Roles and Activities (SRA) were evaluated using linear mixed effect models by cancer type, then compared to the minimal important change (MIC, 2 points). Survivors were 65.44 ± 12.84 years old (range: 19-91), male (54%), with a median of 12 visits. Improvements in GPH were significant (p < 0.05) for all cancer types and all achieved MIC. Improvements in GMH were significant for 11/12 cancer types and 8/12 achieved MIC. Improvements in PF were significant for all cancer types and all achieved the MIC. Improvements in SRA were significant for all cancer types and all groups achieved the MIC. We observed statistically and clinically significant improvements in HRQOL domains for each of the 12 cancer types evaluated.

The impact of pharmacotherapy on sexual function in female patients being treated for idiopathic overactive bladder: a systematic review

BackgroundOveractive bladder (OAB) is a condition defined by urgency with or without incontinence which disproportionately affects female patients and has a negative impact on sexual enjoyment and avoidance behaviour. Pharmacotherapy can be considered one of the main options for treating OAB. This research set out to determine the impact of pharmacotherapy on sexual function in females with OAB.MethodsThis research used the robust methodology of a systematic review. The clinical question was formulated using the PICO (population, intervention, control, and outcomes) format to include females being treated with pharmacotherapy (anticholinergics or beta-3 adrenergic agonists) for idiopathic OAB with the use of a validated questionnaire assessing self-reported sexual function at baseline and post-treatment. The review incorporated the MEDLINE, PubMed and EMBASE databases. The AMSTAR 2 (A Measurement Tool to Assess Systematic Reviews) appraisal tool was used to guide the review process. Two reviewers worked independently in screening abstracts, deciding on the inclusion of full-texts, data extraction and risk of bias assessment.ResultsIn female patients with OAB, pharmacotherapy does seem to offer at least partial improvement in self-reported sexual function outcomes after 12 weeks of therapy. Still, the value of this finding is limited by an overall poor quality of evidence. Patients with a higher degree of bother at baseline stand to benefit the most from treatment when an improvement within this health-related quality of life domain is sought.ConclusionThis research should form the basis for a well-conducted randomized controlled study to accurately assess sexual function improvements in females being treated with pharmacotherapy for OAB.

Factors Associated with the Health-Related Quality of Life of Malaysian Young Adults Post-Pandemic.

The transition from school to university brings significant adjustments in lifestyle, body weight, and living environment for young adults, potentially impacting their quality of life. Emerging evidence suggests the coronavirus disease of 2019 (COVID-19) pandemic may have exacerbated these changes. This cross-sectional study involved 361 young adults (18-25 years) from Malaysian tertiary institutions, aiming to identify factors associated with health-related quality of life (HRQOL) post-COVID-19 restrictions. Data were collected online between April and July 2022, utilizing the WHOQOL-BREF for HRQOL assessment. Participants, with a median age of 23, scored highest in the physical health domain (mean: 63.2, SD = 16.2) and lowest in psychological health (mean: 58.2, SD = 16.9). Physical health domain scores varied by ethnicity, the field of study, weight category, and prescription medicine usage; environmental health scores by ethnicity and household income; and social health scores by age. Moderate perceived stress and low perceived support were significant predictors of poor HRQOL. Across the weight categories, sleep quality, perceived stress, and support have consistently impacted the HRQOL domain scores. This study underscores the multifaceted influences on young adults' quality of life during the transition to university, especially in post-pandemic adjustments, highlighting the importance of addressing factors such as perceived stress and support to enhance overall well-being.

Rehabilitation in obstructive sleep apnea: an ignored treatment adjunct.

Patients with obstructive sleep apnea (OSA) remain physically inactive during the day, are deconditioned, and have an impaired health-related quality of life (HRQoL). The role of rehabilitation is not yet defined in OSA, despite proven effective modalities for chronic illnesses like chronic obstructive pulmonary disease. In this prospective study, over a period of one year, 30 individuals with sleep-disordered breathing were included. Before recruitment, every patient was receiving continuous positive airway pressure treatment for at least 4 weeks. A statistically significant negative correlation was seen between the apnea hypopnea index and reductions in 6-minute walk distance, energy, and general health, which signified that patients with greater levels of daytime sleepiness have poor quality of life and are more deconditioned. Enrolled patients in the study underwent a 20-session rehabilitation program (with a minimum of 2 sessions per week). The patient received resistance and endurance exercises, dietary guidance, and counseling at each session. Before and after rehabilitation, target parameters such as 6MWD, HRQoL domains, Epworth sleepiness scale (ESS), and body mass index (BMI) were recorded. All 8 HRQoL domains showed improvement post-rehabilitation. Along with improvements in ESS and BMI, the 6MWD was also improved. No adverse event such as cardio-respiratory distress occurred in individuals undergoing rehabilitation. To conclude, rehabilitation is a safe and efficacious modality as an adjunct to positive airway pressure therapy in OSA patients.

Concizumab prophylaxis in persons with hemophilia A or B with inhibitors: patient-reported outcome results from the phase 3 explorer7 study

BackgroundPatient-reported outcomes (PROs) reflect patient perceptions of disease and treatment and are important for evaluating new therapies. ObjectivesEvaluate the effects of once-daily concizumab prophylaxis on health-related quality of life (HRQoL), treatment burden, and treatment preference in males aged ≥12 years with hemophilia A/B with inhibitors. MethodsPatients enrolled in the multicenter, open-label explorer7 phase 3 study (ClinicalTrials.gov identifier: NCT04083781) were randomized to receive no prophylaxis (arm 1) or concizumab prophylaxis (arm 2) or were nonrandomly allocated to concizumab prophylaxis (arms 3 and 4). The study included questionnaires to assess patients’ perception of HRQoL (Haemophilia Quality of Life Questionnaire for Adults), treatment burden (Hemophilia Treatment Experience Measure), and treatment preference (Haemophilia Patient Preference Questionnaire). ResultsThe estimated treatment difference between patients receiving concizumab prophylaxis vs no prophylaxis at week 24 for Haemophilia Quality of Life Questionnaire for Adults “total score” was −22.6 points (95% CI, −42.5; −2.7), directionally favoring patients receiving concizumab prophylaxis. For Hemophilia Treatment Experience Measure “total score,” the estimated treatment difference was −19.9 points (95% CI, −34.3, −5.6) in favor of concizumab vs no prophylaxis. The majority of patients receiving concizumab expressed a preference for concizumab over their previous treatment, the main reasons being “fewer bleeds,” “require less time,” and “less painful to inject.” Across all PROs, there were less responses collected than anticipated, limiting interpretations. ConclusionPROs collected during the explorer7 study showed improvements in some domains of HRQoL, treatment burden, and patient treatment preference in persons with hemophilia A or B with inhibitors receiving concizumab prophylaxis compared with no prophylaxis.

Statistical Analysis Methods and Reporting of Patient-Reported Outcomes in Randomized Controlled Trials for Cancer Conducted in Japan: A Systematic Review.

The Setting International Standards in Analyzing Patient-Reported Outcomes and Quality of Life Endpoints Data (SISAQOL) initiative was established in 2016 to assess the quality and standardization of patient-reported outcomes (PRO) data analysis in randomized controlled trials (RCTs) on advanced breast cancer. The initiative identified deficiencies in PRO data reporting, including nonstandardized methods for handling missing data. This study evaluated the reporting of health-related quality of life (HRQOL) in Japanese cancer RCTs to provide insights into the state of PRO reporting in Japan. The study reviewed PubMed articles published from 2010 to 2018. Eligible studies included Japanese cancer RCTs with ≥50 adult patients (≥50% were Japanese) with solid tumors receiving anticancer treatments. The evaluation criteria included clarity of the HRQOL hypotheses, multiplicity testing, primary analysis methods, and reporting of clinically meaningful differences. Twenty-seven HRQOL trials were identified. Only 15% provided a clear HRQOL hypothesis, and 63% examined multiple HRQOL domains without adjusting for multiplicity. Model-based methods were the most common statistical methods for the primary HRQOL analysis. Only 22% of the trials explicitly reported clinically meaningful differences in HRQOL. Baseline assessments were reported in most trials, but only 26% reported comparisons between the treatment groups. HRQOL analysis was based on the intention-to-treat population in 19% of the trials, and 74% reported compliance at follow-up; however, 41% did not specify how missing values were handled. Although the rates of reporting clinical hypotheses and clinically meaningful differences were relatively low, the current state of HRQOL evaluation in the Japanese cancer RCT appears comparable to that of previous studies.

Quality of life in 583 head and neck cancer survivors assessed with the FACE-Q head and neck cancer module

ObjectivesLong-term health-related quality of life (HRQOL) is frequently affected in head and neck cancer (HNC) survivors. Due to the shortage of studies investigating long-term patient-reported outcomes, we investigated long-term HRQOL using the novel FACE-Q HNC Module. MethodsA retrospective cross-sectional single-center study was performed, including all patients who underwent curative treatment for HNC between 2006 and 2013. All eligible patients (n = 863) were invited to participate of whom 540 completed the questionnaires. Additionally, a prospective longitudinal cohort of 43 HNC patients treated between 2020 and 2022 was included who preoperatively filled in the FACE-Q, and at three, six, and 12 months postoperatively. HRQOL domain scores were analyzed to visualize group characteristics by tumor site and type of surgical resection. ResultsBoth surgical and non-surgical HNC treatments predominantly affected long-term functional HRQOL domains (eating, salivation, speech, and swallowing), eating distress, and speaking distress, with distinct profiles depending on tumor site and type of treatment. In contrast, few long-term intergroup differences between HNC patients were observed for appearance, smiling, drooling distress, and smiling distress. Longitudinal data showed significant deterioration across all functional HRQOL domains in the short-term following treatment. Patients predominantly reported long-lasting negative treatment effects at 12 months follow-up for functional domains, whereas psychological domains showed near-complete recovery at group level. ConclusionsAt long-term, various function-related and psychosocial HRQOL domains still are affected in head and neck cancer survivors. The results may serve to better inform patients with regard to specific treatments and highlight HRQOL domains which may potentially be optimized.

Health-related quality of life in children and adolescents with Marfan syndrome or related disorders: a controlled cross-sectional study

BackgroundThis cross-sectional controlled study aims to assess health-related quality of life (HRQoL) of children and adolescents with a molecular diagnosis of Marfan syndrome (MFS) or related disorders and to evaluate the factors associated with HRQoL in this population. Sixty-three children with MFS and 124 age- and sex-matched healthy children were recruited. HRQoL was assessed using the Pediatric Quality of Life Inventory (PedsQL™) generic questionnaire. The correlation between HRQoL scores and the different continuous parameters (age, body mass index, disease severity, systemic score, aortic sinus diameter, and aerobic physical capacity) was evaluated using Pearson’s or Spearman’s coefficient. A multiple linear regression analysis was performed on the two health summary self-reported PedsQL™ scores (physical and psychosocial) to identify the factors associated with HRQoL in the MFS group.ResultsExcept for emotional functioning, all other domains of HRQoL (psychosocial and physical health, social and school functions) were significantly lower in children with MFS compared to matched healthy children. In the MFS group, the physical health summary score was significantly lower in female than in male patients (self-report: absolute difference [95%CI] = -8.7 [-17.0; -0.47], P = 0.04; proxy-report: absolute difference [95%CI] = -8.6 [-17.3; 0.02], P = 0.05) and also negatively correlated with the systemic score (self-report: R = -0.24, P = 0.06; proxy-report: R = -0.29, P = 0.03) and with the height Z-score (proxy-report: R = -0.29, P = 0.03). There was no significant difference in the physical health summary scores between the different genetic subgroups. In the subgroup of 27 patients who performed a cardiopulmonary exercise test, self- and proxy-reported physical health summary scores were highly correlated with their aerobic physical capacity assessed by peak oxygen consumption (VO2max) and ventilatory anaerobic threshold (VAT). In the multivariate analysis, the most important independent predictors of decreased physical health were increased height, decreased body mass index, decreased VAT and use of prophylactic therapy.ConclusionsThis study reports an impaired HRQoL in children and adolescents with MFS or related conditions, in comparison with matched healthy children. Educational and rehabilitation programs must be developed and evaluated to improve exercise capacity and HRQoL in these patients.Trial registrationClinicalTrials.gov, NCT03236571. Registered 28 July 2017.

Self-reported health related quality of life in children and adolescents with an eating disorder

BackgroundEating disorders in children and adolescents can have serious medical and psychological consequences. The objective of this retrospective quantitative study is to gain insight in self-reported Health Related Quality of Life (HRQoL) of children and adolescents with a DSM-5 diagnosis of an eating disorder.MethodCollect and analyse data of patients aged 8–18 years, receiving treatment for an eating disorder. At the start and end of treatment patients completed the KIDSCREEN-52, a questionnaire measuring HRQoL.ResultsData of 140 patients were analysed. Children diagnosed with Anorexia Nervosa, Bulimia Nervosa, and Other Specified Feeding or Eating Disorder all had lower HRQoL on multiple dimensions at the start of treatment, there is no statistically significant difference between these groups. In contrast, patients with Avoidant Restrictive Food Intake Disorder only had lower HRQoL for the dimension Physical Well-Being. HRQoL showed a significant improvement in many dimensions between start and end of treatment, but did not normalize compared to normative reference values of Dutch children.ConclusionThe current study showed that self-reported HRQoL is low in children with eating disorders, both at the beginning but also at the end of treatment. This confirms the importance of continuing to invest in the various HRQoL domains.

Experiences on health-related quality of life of Jordanian patients living with heart failure: A qualitative study.

Quantitative studies have provided valuable statistical insights into Health-Related Quality of Life (HRQoL) among patients with Heart Failure (HF), yet they often lack the depth to fully capture the nuanced, subjective experiences of living with HF particularly in the specific context of Jordan. This study explores the personal narratives of HF patients to understand the full impact of HF on their daily lives, revealing HRQoL aspects that quantitative metrics often miss. This is crucial in developing regions, where the increasing prevalence of HF intersects with local healthcare practices, cultural views, and patient expectations, providing key insights for tailored interventions and better patient care. Utilizing a phenomenological qualitative design, this study conducted face-to-face semi-structured interviews with 25 HF patients to deeply explore their lived experiences. Thematic analysis was employed to identify major themes related to their perceptions of HF as a disease, its impact on various HRQoL domains, and their recommended strategies to enhance HRQoL. The study involved 25 participants (13 males, 12 females), aged 26-88 years (mean 63), with diverse education and heart failure (HF) severities. It revealed three themes: HF perceptions, its impact on health-related quality of life (HRQoL) across physical, psychosocial, spiritual, cognitive, and economic domains, and HRQoL improvement strategies. Participants had varied HF knowledge; some lacked basic understanding. The physical impact was most significant, affecting daily life and causing symptoms like breathing difficulties, coughing, edema, and fatigue. This physical aspect influenced their psychosocial and spiritual lives, cognitive functions, and economic stability, leading to fear, frustration, worry, social isolation, spiritual and cognitive challenges, and employment problems. The results underscores the need for holistic healthcare approaches, integrating medical, psychological, and social support. Key recommendations include integrated care models, comprehensive patient education, support networks, and policy interventions to enhance HF patient care.

Predictors of damage accrual and its impact on health-related quality of life of thrombotic antiphospholipid syndrome: Independent validation of the damage index for antiphospholipid syndrome (DIAPS).

We aim to independently assess the validity of the damage index for antiphospholipid syndrome (DIAPS) in thrombotic antiphospholipid syndrome (APS) patients by exploring the prevalence and risk factors of organ damage and evaluating its impact on health-related quality of life (HR-QoL). Cross-sectional study including all thrombotic APS patients (Sydney criteria) attending a Portuguese tertiary centre. Damage was assessed using the DIAPS, and HR-QoL using the 3- and 5-level EuroQol HR-QoL (EQ-D5-3L and 5L), and Visual Analogue Scale (VAS) applied via a phone questionnaire. Spearman's correlation between DIAPS and the HR-QoL scales was performed. Risk factors for damage accrual and HR-QoL impairment were explored using univariate and multivariate logistic regression. Among the 108 patients (female, 65.7%; white, 90.7%; primary APS, 75.9%; median disease duration, 6years), damage (DIAPS≥1) developed in 48.2% of patients (mean ± SD DIAPS, 3.08 ± 1.83). DIAPS's neuropsychiatric domain was the most affected (24.2%), followed by the peripheral vascular domain (20.3%). No clinical, demographic nor laboratory parameters were significantly associated with damage. Regarding HR-QoL, pain/discomfort, anxiety/depression and usual activities domains were the most frequently impaired in both scales. DIAPS's domains correlated similarly with the EQ-5D-3L and 5L scales' individual domains. Female sex, medical disorders, secondary APS and type of presenting thrombosis (arterial) increased the risk of HR-QoL impairment. Total DIAPS was associated with higher odds of mobility, self-care and pain/discomfort impairment in both EQ-5D-3L and 5L scales but lost its independent risk in multivariable analysis. This external validation of DIAPS reinforces the ability of the score to correlate with HR-QoL while also highlighting risk factors for HR-QoL impairment other than damage accrual.

Long-Term Health-Related Quality of Life following Acute Type A Aortic Dissection with a Focus on Male-Female Differences: A Cross Sectional Study.

Objectives: Acute type A aortic dissection (ATAAD) is a life-threatening cardiovascular emergency, of which the long-term impact on health-related quality of life (HRQoL) and male-female-specific insights remain inadequately clarified. Methods: Consecutive adult ATAAD patients who underwent surgery were retrospectively included between 2007 and 2017 in four referral centers in the Netherlands, and baseline data were collected. The 36-Item Short-Form (SF-36) Health Survey was sent to all survivors between 2019 and 2021 and compared to validated SF-36 scores of the Dutch general population stratified by age group and sex. Results: In total, 324/555 surviving patients returned the SF-36 questionnaire (response rate 58%), of which 40.0% were female; the median follow-up was 6.5 years (range: 1.7-13.9, IQR: 4.0-9.4) after surgery for ATAAD. In comparison to the general population, ATAAD patients scored significantly lower on 6/8 SF-36 subdomains and higher on bodily pain. Differences in HRQoL domains compared to the sex-matched data were largely comparable between sexes, apart from bodily pain. In the age-matched subgroups impaired HRQoL was most pronounced in younger patients aged 41-60 (5/8 impaired domains). Female ATAAD patients scored significantly worse on 5/8 SF-36 subdomains and the physical component summary (PCS) scores than male patients. Age at ATAAD, female sex, hypertension, COPD, and prior thoracic aortic aneurysm were associated with worse PCS scores. Conclusions: Long-term HRQoL was impaired in both male and female ATAAD patients when compared to the general population. Further studies on the nature of this impairment and on interventions to improve HRQoL after ATAAD are clearly warranted, with special attention to females and younger patients.

A Qualitative Tool to Guide in the Interpretation of the Numerical Rating Scale for Pruritus Intensity in Patients with Atopic Dermatitis.

Atopic dermatitis is a cutaneous inflammatory disease characterized by intense pruritus, which is often underestimated despite its direct impact on patients' health-related quality of life and the high burden it poses. The authors' goal was to design a qualitative tool to guide patients and healthcare professionals in their assessment and interpretation of pruritus intensity using a numerical rating scale. The draft of this tool, henceforth "guideline", was developed based on a systematic literature review and focus groups comprising patients and a scientific committee. This draft was validated with an independent group of patients and the final version was designed following their feedback. According to the results of the systematic review, pruritus impacts 6 health-related quality of life domains: sleep quality; emotional status; overall health-related quality of life; physical function; social/sexual activity; productivity, particularly affecting sleep quality and the emotional domain. Patients considered that physical function was the most strongly affected domain, followed by sleep quality and emotional well-being, establishing that a minimum pruritus intensity of 4 and 7 points impacts moderately and severely, respectively, on the different domains of patients' health- related quality of life. The guideline may help patients and healthcare professionals to interpret and assess pruritus intensity using a numerical rating scale and to understand the impact of pruritus on patients' health-related quality of life.

Health-related Quality of Life of Omani Adult Patients with β-Thalassemia Major at Sultan Qaboos University Hospital.

The impact of beta-thalassemia major (β-TM) on health-related quality of life (HRQoL) in Oman is not yet known. Affected individuals suffer from a wide range of physical, mental, and social consequences due to the need for regular hospital visits for blood transfusions and complications related to iron overload. This study aimed to assess the HRQoL of adult patients with β-TM attending a single tertiary care center in Muscat, Oman, to identify factors influencing Omani patients' QoL for improved management and counseling. A cross-sectional study was conducted among adult patients (≥ 18 years) with β-TM at Sultan Qaboos University Hospital between September and November 2022. A validated Arabic version of the self-reported 36-item short-form health survey was used to determine HRQoL. A total of 78 patients with β-TM were enrolled in the study; 53.8% were male and the mean age was 26.0±0.8 years, ranging from 21-53 years. Most patients were from Al Batinah North governorate (n = 21; 26.9%) and Muscat (n = 20; 25.6%), unmarried (n = 44; 56.4%), did not have university-level education (n = 45; 57.7%), and were unemployed (n = 44; 56.4%). The HRQoL domain with the highest score was role limitations due to emotional problems (median score = 100), while general health and vitality received the lowest scores (mean scores were 60.2±15.9 and 59.1±20.5, respectively). Several variables were associated with better HRQoL in certain domains, including being married, having a high level of education, being employed, exercising regularly, and receiving family support (p < 0.05). However, iron overload and having ≥ 3 β-TM-related disease complications were associated with poorer general health scores (p = 0.031 and 0.038, respectively), while a history of mental issues was associated with poorer scores in six out of eight HRQoL domains (p < 0.05). Moreover, negative perceptions regarding the social impact of the disease including delayed marriage, workplace difficulties, and reduced academic achievement were associated with poorer HRQoL in various domains (p < 0.05). Although the studied sample reported generally good QoL, several factors were found to affect HRQoL in various domains. Healthcare providers should prioritize maintaining acceptable iron overload levels in Omani patients with β-TM to help avoid the development of disease-related complications, thereby ensuring better control of their clinical conditions and consequently improving their HRQoL.

Abstract 7441: Health-Related quality of life and DNA methylation-based aging biomarkers among survivors of childhood cancer: Results from the St. Jude Lifetime Cohort

Abstract Background: Childhood cancer survivors often reported poorer health-related quality-of-life (HRQOL) compared to age/sex-matched controls, indicating toxic stress resulting from high burden of treatment-related late effects. This study aimed to investigate cross-sectional associations between poorer HRQOL and epigenetic age acceleration (EAA) using several epigenetic clocks as well as other DNA methylation (DNAm)-based aging biomarkers. Methods: DNAm was generated using the Infinium EPIC BeadChip version 1 with blood-derived DNA (median [min-max] for age at blood draw = 34.5 [18.5-66.6] years) from 2,206 long-term survivors in the St. Jude Lifetime Cohort. DNAm-based aging biomarkers and epigenetic age using multiple clocks (e.g., GrimAge; DNAmB2M: beta-2-microglobulin; DNAmADM: adrenomedullin) were derived from the DNAm Age Calculator (https://dnamage.genetics.ucla.edu). HRQOL was measured using the Medical Outcomes Study 36-Item Short-Form Health Survey which assesses eight domains, and physical (PCS) and mental (MCS) component summaries. General linear models evaluated associations between HRQOL and epigenetic age acceleration (EAA, e.g., EAA_GrimAge) or other DNAm-based biomarkers (e.g., chronological age adjusted residuals of DNAmB2M, which was similar to the approach in which EAA was derived) after adjusting for age, sex and cancer treatment exposures. Results: Worse physical and mental HRQOL was associated with greater EAA_GrimAge (PCS: β [95%CI]=-0.621 [-0.744, -0.499] years, P=2.48 × 10−21; MCS: -0.548 [-0.667, -0.430] years, P=2.82 × 10−18; and all eight individual HRQOL domains), followed by chronological age adjusted residuals of DNAmB2M (PCS: -0.101[-0.144, -0.058], P=2.31 × 10−5; MCS: (-0.053 [-0.094, -0.011], P=0.030; and seven HRQOL domains), and chronological age adjusted residuals of DNAmADM (PCS: -0.096 [-0.139, -0.053], P=5.45 × 10−5; and five HRQOL domains). EAA_Horvath (Horvath clock, the representative 1st generation epigenetic clock) was the least informative biomarker, which was not associated with any HRQOL domains. Conclusions: Worse HRQOL in different domains was associated with EAA_GrimAge and chronological age adjusted residuals of DNAmB2M, although future longitudinal studies are needed to illuminate the cause and consequence relationship between HRQOL and aging biomarkers. Citation Format: Noel-Marie Plonski, Yue Pan, Cheng Chen, Qian Dong, Xijun Zhang, Nan Song, Kyla Shelton, John Easton, Heather Mulder, Jinghui Zhang, Geoffrey Neale, Emily Walker, Hui Wang, Rachel Webster, Tara Brinkman, Kevin R. Krull, Gregory T. Armstrong, Kirsten K. Ness, Melissa M. Hudson, Qin Li, I-Chan Huang, Zhaoming Wang. Health-Related quality of life and DNA methylation-based aging biomarkers among survivors of childhood cancer: Results from the St. Jude Lifetime Cohort [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2024; Part 1 (Regular Abstracts); 2024 Apr 5-10; San Diego, CA. Philadelphia (PA): AACR; Cancer Res 2024;84(6_Suppl):Abstract nr 7441.