HRQOL Scores Research Articles

A06 - OGC LAsting Symptoms after Oesophageal Resectional Surgery (LASORS): Multicentre validation cohort study

Abstract Background Patients are living longer with the long-term morbidity of oncological and surgical therapies as oesophageal cancer outcomes improve. Existing symptomatology and quality of life tools are cumbersome and moreover not designed for the post-treatment survivorship setting. The LASER study identified six key symptoms thought to predict poor health-related quality of life. The current study aimed to validate this six-symptom LAsting Symptoms after Oesophageal Resection (LASOR) clinical tool, and assess its clinical utility. Method Between 2015 and 2019, patients from UK centres who underwent curative-intent oesophageal cancer treatment, and were disease-free at least one year postoperatively, were asked to complete LASOR, EORTC QLQ-C30 and QLQ-OG25 questionnaires. LASOR symptoms (low mood, reduced energy, thoracotomy pain, heartburn, diarrhoea, and bloating after eating) were correlated with EORTC HRQOL scores. Multivariable regression analysis identified symptoms associated with poor HRQoL. Receiver operating characteristic curve analysis was used to validate the LASOR tool. Results 263 patients, spanning a combination of surgical approaches (two-stage, three-stage, left thoracoabdominal, transhiatal), techniques (open, minimally invasive, hybrid), and disease stage, completed the questionnaires. Four of the six LASOR symptoms were associated with poor HRQoL: reduced energy (OR 2.13; 95% CI 1.20-2.87), low mood (OR 1.86; 95% CI 1.4503.12), diarrhoea (OR 1.48; 95% CI 1.06-2.05), and bloating after eating (OR 1.35; 95% CI 1.03-1.77). The LASOR tool produced an area under the curve of 0.85. Conclusion The six-symptom LASOR tool generated a reliable model for identification of patients with a poor HRQOL, with an overall diagnostic accuracy of over 80%. This is the first clinical symptom and quality of life tool to be validated in esophageal cancer patients post-curative treatment. The LASOR tool is straightforward to administer and acceptable to patients. Clinical utility lies both in identifying patients at risk of poor HRQoL and in planning survivorship services.

Associations between symptom-based long COVID clusters and long-term quality of life, work and daily activities among individuals testing positive for SARS-CoV-2 at a national retail pharmacy

BackgroundEvidence on long COVID symptom clustering patterns among patients with COVID-19 is limited. We summarized long COVID symptoms in clusters defined by number of symptoms co-occurring together, and we assessed Health-Related Quality of Life (HQRoL), Work Productivity and Activity Impairment (WPAI) outcomes across these clusters over time. We assessed associations between the clusters and BNT162b2 vaccination status.MethodsA prospective longitudinal patient-reported outcomes (PRO) study recruited laboratory-confirmed symptomatic COVID-19 patients seeking testing from a national retail pharmacy. Long COVID-19 symptoms were self-reported by participants at 4-week, 3-month and 6-month surveys. Patient classes identified via latent class analysis (LCA) with long COVID-19 symptoms were simplified into clusters based on number of symptoms. HRQoL and WPAI outcomes were collected using EQ-ED-5L and WPAI: GH questionnaires. Mixed models for repeated measures analyses were conducted to examine associations between exposure groups and outcomes.ResultsThe study included 328 participants that were segmented into three groups of long COVID-19 symptoms based on LCA and then simplified by the number of symptoms (Cluster 1 low, <2; Cluster 2 moderate, 2–6; and Cluster 3 high, >6 symptoms). The number of long COVID-19 symptoms was negatively associated with HRQoL and WPAI, whereby participants with high symptom burden (>6 symptoms) had the lowest HRQoL and WPAI scores assessed by absenteeism, presenteeism, work productivity loss, activity impairment, and hours worked metrics. Compared with those unvaccinated and not up-to-date with COVID-19 vaccination, subjects boosted with BNT162b2 consistently reported less symptom burden during the follow-up, regardless of their symptom-based cluster.ConclusionThree distinct patient clusters based on frequency of long COVID symptoms experienced different HRQoL and WPAI outcomes over 6 months. The cluster with more concomitant symptoms experienced greater burden than the others. Participants up-to-date with BNT162b2 reported lower symptom burden across all clusters and timeframes.Clinical trial registrationClinicaltrials.gov NCT05160636.

Health related quality of life in children following Fontan surgery: A Malaysian perspective

BackgroundChildren with Fontan circulation suffer from morbidities and physical limitations that affect their quality of life. The study examined the health-related quality of life (HRQoL) of children in Malaysia following the Fontan procedure. MethodsAll patients who are 8 years and older and who had undergone Fontan palliation for at least 1 year were assessed using electronically distributed, aged-based Pediatric Quality of Life Inventory™ (PedsQL) Generic and Cardiac modules. The scores from the patients were compared with those of aged-match students in the Klang Valley and patient's parents. ResultsA total of 133 patients [time after Fontan: 6.24 years (IQR: 2.54, 8.54); SpO2: 92 % (IQR: 88, 95)] and parents and 130 normal subjects participated in the study. Fontan patients have reduced HRQOL scores compared to their healthy peers in almost all domains. Patients with NYHA class I demonstrated higher PedsQL scores in almost all domains. Patients with SpO2 < 95 % and taking more medication had lower PedsQL scores in total and physical score. Similarly, those with many complications show significantly low PedsQL scores in all domains. There was poor agreement between patients' and parents' perceived HRQoL in most of the domains in the generic module, but the difference was not as explicit in the cardiac module. ConclusionsFontan patients had a lower perceived quality of life compared to healthy controls. Physical ability and Fontan complications influenced the perceived quality of life, especially in younger children. Parents generally underestimate the impact of Fontan towards their children's quality of life.

An assessment of the vision-related quality of life among adult patients with diabetes mellitus in Accra, Ghana

PurposeTo assess the overall vision-related quality of life (VRQoL) of adults with diabetes mellitus attending selected diabetic and eye care facilities in Accra, Ghana. MethodsThis was a hospital-based analytical cross-sectional study which took place from January to July 2023. A purposive consecutive sampling technique was used to select 150 participants. A questionnaire consisting of the WHO-PBD/VF20 and EuroQol Five Dimensional Scale instruments was used to obtain information pertaining to the demographic characteristics, vision-related quality of life and health-related quality of life of selected participants. ResultsThe median participant age was 61.0 years. Participants with diabetic retinopathy had a worse mean overall total VRQoL score (19.4) than those without (79.9) in all domains; general visual functioning, 41.3 vs. 78.7, p = 0.002; general functioning, 15.1 vs. 80.2, p = 0.001; psychosocial, 35.7 vs. 79.3, p = 0.001; and visual symptoms, 24.4 vs. 80.4, p = 0.001. Participants with diabetic retinopathy also had a worse mean overall HRQoL score (17.4) than those without (81.0) in all domains; mobility, 32.4 vs. 79.6, p = 0.001; self-care, 53.9 vs. 77.6, p = 0.001; usual activities, 30.2 vs. 79.8, p = 0.001; pain/discomfort, 36.3 vs. 79.2, p = 0.001; and anxiety, 31.5 vs. 79.7, p = 0.001. ConclusionOur findings suggest a significant deterioration in both vision-related and health-related quality of life with the development of diabetic retinopathy. They highlight the need for nationwide screening programs to identify people with diabetes mellitus, as well as effective glycemic control to prevent the development of complications such as diabetic retinopathy.

The impact of the COVID-19 surge after the end of China's Zero-COVID policy on the health-related quality of life of IBD patients

IntroductionIn December 2019, COVID-19 emerged in Wuhan, Hubei Province, China, and rapidly spread worldwide. On December 2022, the Chinese government ended the zero-COVID policy, leading to a surge in cases and significantly impacting daily life. IBD patients face heightened infection risks and substantial effects on their quality of life during the pandemic.MethodsThis cross-sectional study collected demographic, COVID-19-related, and HRQoL data from 224 IBD patients who had previously received treatment at Nanjing BenQ Medical Center. Participants completed an online survey between January 9, 2023, and January 23, 2023. The SIBDQ was used to assess HRQoL. Statistical analysis was performed using SPSS version 26.ResultsThe study found that UC patients reported higher HRQoL compared to CD patients (p = 0.037). Patients who perceived themselves as less susceptible to COVID-19 had higher scores (p = 0.006 and p = 0.009). Those whose work or study was unaffected also had higher scores (p < 0.001 and p = 0.002). Additionally, irregular medication adherence was associated with lower HRQoL scores (p = 0.014 and p = 0.007). Multivariate linear regression results showed that IBD patients whose work or study was affected during the COVID-19 pandemic scored lower than those who were not affected (p = 0.038; 95% CI, -7.96 to -0.25). Patients who discontinued IBD medication scored higher than those with irregular medication use (p = 0.020; 95% CI, 1.00 to 10.90).ConclusionsThis study highlights the significant impact of the COVID-19 pandemic on the HRQoL of IBD patients. The findings emphasize the need for integrated care addressing both the physical and psychological aspects of IBD.

Health-related quality of life of cancer patients: Findings from Western Rajasthan.

Cancer is one of the major public health concerns leading to high trends of mortality and morbidity in India. Health-related quality of life (HRQoL) is an indicator of the sense of well-being applicable, which includes all the domains of physical, social, emotional, and functional well-being. The inferences can strengthen the palliative care needs of patients. This study was conducted to assess the HRQoL of patients on anticancer therapy and to measure the perceived palliative care needs amongst diagnosed patients on cancer therapy. Mixed method approach was used to assess the objectives of the study. FACT-G questionnaire was used to assess the HRQoL of patients among a sample size of 290 participants for quantitative analysis and 9 for in-depth interviews. Data were generated and analyzed in SPSS version 23. Spearman correlation coefficient was used to test the association between the well-being score and demographic factors. The mean age of the study population was 52.46 ± 13.83 years with 65% females. The mean FACT-G score was 61.1 ± 17.1 with mean domain values of 14.97 (physical well-being), 16.55 (social well-being), 16.21 (emotional well-being) and 13.35 (functional well-being). FACT-G score was significantly associated with education level, type of cancer and type of anticancer therapy. Qualitative themes described pertaining to delayed diagnosis, financial distress, side effects, social isolation (factors worsening QoL) and support, and attitude (factors improving QoL). HRQOL scores were found low in all types of cancer and early referral for palliative care might have a positive effect on the quality of life of cancer patients. Cancer is the leading cause of morbidity and mortality with its profound social and economic consequences leading to impoverishment and societal inequity.

Health-related quality of life and its determinant factors in Thai children with cancer: parents vs. children perspectives

BackgroundHealth-related quality of life (HRQOL) is a vital assessment to demonstrate the achievement in pediatric cancer care parallels that of medical treatment. The Pediatric Quality of Life Inventory (PedsQL) 3.0 Cancer Module in the Thai Version has become a standard tool to access the HRQOL among Thai children with cancer and their families. This study aimed to explore the HRQOL and factors related to HRQOL among pediatric oncology patients using the PedsQL 3.0 Cancer Module.MethodsIn 2018–2019, a single-institution, cross-sectional study was conducted among children with cancer and their families in Bangkok, Thailand. A paired-sample t-test was performed to evaluate the differences between the HRQOL scores of the child and parents' reports. Linear regression was used to evaluate factors associated with HRQOL and which particular domains of the PedsQL 3.0 Cancer Module were influenced.ResultsEighty-five children with cancer and their families were enrolled. The patients’ mean age was 10.82 ± 5.48 years. The most common cancer types included acute lymphoblastic leukemia (n = 32, 67%), central nervous system tumors (n = 13, 15%), osteosarcoma (n = 10, 27%) and neuroblastoma (n = 9, 24%), in rank. The mean HRQOL scores in child and parent reports were 74.37 ± 15.7 and 70.42 ± 17.15, respectively (p = 0.034). Factors negatively correlated to HRQOL in parent reports were the number of outpatient visits (p = 0.019) and hospital admissions (p = 0.002). The number of hospitalizations was the only independent factor that affected HRQOL (p = 0.044). The number of outpatient visits and/or hospital admissions was influenced by pain and hurt, nausea, procedural anxiety and communication domains (p < 0.05). Only the number of hospitalizations was an independent factor influencing the procedural anxiety domain in HRQOL (p = 0.005).ConclusionHRQOL among Thai children with cancer was desirable from both children's and parent's perspectives. Differences between child and parent HRQOL scores were observed. The number of outpatient visits and hospital admissions affected HRQOL, particularly in the procedural anxiety aspect.Trial registrationThai Clinical Trials Registry (TCTR) Number: TCTR20200904001 (04/09/2020), https://www.thaiclinicaltrials.org/.

Effects of Exercise-Based Cardiac Rehabilitation in Patients After Myocardial Infarction

Background: Myocardial infarction (MI) is a leading cause of mortality and physical disability worldwide, particularly among the elderly. Despite advancements in percutaneous coronary intervention (PCI) and pharmacotherapy, many MI patients continue to experience health deterioration. Exercise-based cardiac rehabilitation has shown potential in improving myocardial perfusion, endothelial function, and reducing thrombotic activity, thereby enhancing patient outcomes. Objective: This study aimed to determine the effects of a supervised exercise-based cardiac rehabilitation program on quality of life, heart rate, and blood pressure in patients’ post-myocardial infarction. Methods: A randomized controlled trial was conducted with 36 participants aged 40 to 60 who experienced an MI within the previous three weeks. Participants were randomly assigned to Group A (exercise program) or Group B (educational interventions). Group A engaged in a 6-week supervised exercise program, including warm-up exercises, aerobic activities, and cool-down sessions. Quality of life was assessed using the CDC HRQOL-14 questionnaire, while heart rate and blood pressure were measured pre- and post-intervention. Data analysis was performed using SPSS 25, employing independent and paired sample t-tests. Results: Group A showed significant improvements in HRQOL scores: Module 1 (p=0.04), Module 2 (p=0.04), and Module 3 (p=0.02). Heart rate improved by 12 bpm (p=0.03), and systolic blood pressure reduced by 8.81 mmHg (p=0.01) in Group A compared to Group B. Conclusion: Exercise-based cardiac rehabilitation significantly improves quality of life, heart rate, and blood pressure in post-MI patients.

Effect of a pragmatic lifestyle modification intervention on physical activity levels and body mass index among obese and overweight adolescents in Udupi, India: a cluster randomized trial.

Determine the effects of a multifactorial lifestyle intervention on physical activity (PA), BMI and health-related quality of life (QoL) in obese and overweight adolescents. Nine schools in India were clustered randomly in a 12-month study with students allocated to a multifactorial intervention (MFI), or exercise only (EX) or control (CON) group. Participants were adolescents aged 11-16 years (n=671). In the MFI group, adolescents and their parents received lifestyle education using a validated booklet combined with a PA intervention for school students. The EX group received school-based PA only; the CON group continued regular activities. Primary outcomes were PA levels measured with the PAQ-A, and BMI; the secondary outcome was health-related QoL. A linear regression statistical model was used to analyse time, group effects and interactions, with Bonferroni correction for within-group differences at baseline (T0) and at 12-weeks (T1) (post-intervention), 6-month (T2) and 12-month (T3) follow-ups. Significant time and group effects observed for all groups with PA scores (p<0.001), with MFI group having largest increase in PA; with BMI (p<0.001) and MFI showing the least gain in BMI; and HRQOL (p<0.001), with MFI group showing greatest improvement in scores. There were significant increases in PA at T1 and T3 time-points with the EX group, and at T3 time-point only for MFI and CON, with MFI group showing largest increase in HRQOL scores. BMI increased significantly for all groups at T2 (MFI p=0.001, EX p<0.001) and T3 (p<0.001), while HRQOL increased significantly for both MFI and EX at both follow-ups (p<0.001). School-based lifestyle MFI was more effective for improving PA, lifestyle behaviours and HRQOL than exercise alone for adolescents, although BMI was not reduced. MFI with PA could be an effective school-based approach for behaviour modification but BMI has limitations for measuring body composition changes. CTRI/2019/04/018834 (30/04/2019).

Health-related quality of life and its associated factors among infertile women compared with fertile women in public hospital Addis Ababa, Ethiopia: a comparative cross-sectional study

BackgroundInfertility can have detrimental physical, psychological, and social effects that significantly impact health-related quality of life. Although the impact of infertility on quality of life is well established, there is a lack of research comparing the quality of life between fertile and infertile women in Ethiopia.MethodsA hospital-based comparative cross-sectional study was conducted among 287 infertile and 301 fertile women. Participants were selected using systematic random sampling. A structured, validated tool was used to collect data. An independent sample t-test was conducted to determine if there was a difference in the study participants' quality of life domains and the mean total quality of life score. Multiple linear regressions were used to correlate quality of life scores with significant predictor factors for the infertile group.ResultsInfertile women had a mean total Herbal of 66.54 ± 10.18, and fertile women (72.68 ± 7.57) were found to be statistically different between the groups. All domains except the physical domain were significantly different between the groups. Duration of marriage (β = -0.529), number of previous sexual partners (β = -0.410), total number of working hours per day (β = -0.345), types of infertility (β = -0.34), and history of the sexually transmitted disease (β = -0.277), in decreasing order of effect, were found to be associated with the quality of life of infertile women (R2 = 0.725).ConclusionsThe study found that infertile women had a lower mean HRQoL score compared to fertile women, with all domains except for the physical domain being significantly different between the two groups. This suggests that infertility can have a significant impact on various aspects of a woman's life, including her emotional well-being, social functioning, and psychological health. The factors associated with the quality of life of infertile women were the duration of marriage, the number of previous sexual partners, the total number of working hours per day, the types of infertility, and the history of sexually transmitted diseases, with duration of marriage having the strongest association. These findings highlight the need for healthcare providers to address the psychological and social aspects of infertility.

Changes in health-related quality of life in common variable immunodeficiency: an eight-year journey, including the COVID-19 pandemic

ABSTRACT Background Personalized medicine requires the assessment of the impact of health care interventions on Health-Related Quality of Life. Research design and methods We run an observational study of HRQoL in 140 CVID patients with biannual assessments over 8 years using a disease-specific tool, the CVID_QoL, and the GHQ questionnaires. Factors influencing changes in HRQoL scores were identified using multiple linear regression models with a stepwise procedure. Results Infections frequency, female gender, and chronic enteropathy were associated with worse global CVID_QoL scores. The presence of permanent organ damage and older age contributed to the perception of being at risk of health deterioration, while chronic enteropathy was associated with fatigue. The presence of permanent organ damage was also associated with perceived difficulties in usual activities. The frequency of infections was the main risk factor for difficulties in long-term planning and perceptions of vulnerability. Before COVID-19, improved HRQoL scores were associated with reduced respiratory infections and changes in immunoglobulin replacement route and setting. The COVID-19 pandemic caused a sudden deterioration in all HRQoL dimensions, and a further deterioration in the emotional dimension was observed during the pandemic period. Patients who died during the study had worse CVID_QoL scores at all time points, confirming that HRQoL performance is strongly related to patient outcome. Conclusions Periodic HRQoL assessments are needed to capture relevant issues that change over time in patients affected by long-term chronic conditions such CVID, possibly identifying areas of intervention.

Changes in Health-Related Quality of Life of Patients Treated for Esophageal Cancer in Eldoret, Kenya

Purpose: The study objectives were: to determine the demographic and clinical characteristics of patients treated for EC in Eldoret and to determine the change in health-related quality of life of patients treated for EC. Methodology: A longitudinal study was conducted at three cancer centers in Eldoret, Kenya. Participants were interviewed at enrollment (pre-treatment) and three months post-treatment. The study included patients aged 18 and above with histologically confirmed esophageal cancer. Consecutive sampling method was used to enroll study participants until a predetermined sample size of 59 was achieved. Independent variables considered were patient characteristics (demographic and clinical), and baseline HRQoL while the dependent variable was 3 months post-treatment HRQoL. Patients' characteristic data was analyzed using descriptive statistics (frequencies and percentages); change in HRQoL was calculated using the analysis of variance (ANOVA) test and the results were presented using tables. Findings: At baseline, 59 patients (68% female, mean age 56.3 years) were enrolled. The most common complaints were dysphagia (100%) and weight loss (74.6%). The baseline mean HRQoL score was 107.1, indicating a compromised quality of life at the start of treatment. After treatment, patients receiving chemotherapy plus surgery showed improved HRQoL, while radiotherapy alone was associated with deterioration. The differences were statistically significant (p-values: 0.04 and 0.0092, respectively). Multivariate regression revealed that only baseline HRQoL was significantly associated with post-treatment HRQoL (p=0.0065).This study sheds light on the underexplored aspect of HRQoL in Kenyan esophageal cancer patients. The findings emphasize the impact of treatment modalities on HRQoL, with chemotherapy plus surgery showing better outcomes. The study underscores the importance of considering patients' baseline HRQoL in assessing post-treatment outcomes. Addressing these factors can inform targeted interventions to improve the overall well-being of esophageal cancer patients in Kenya. Further research with larger, more diverse samples is warranted to enhance the generalizability of these findings. Unique Contribution to Theory Practice and Policy: This study highly recommends community sensitization and awareness of esophageal cancer to the at-risk population groups, further research on HRQoL as a prognostic marker for patients with esophageal cancer and more high-quality studies on HRQoL with large sample sizes are needed to determine the association between characteristics of the patients and health-related quality of life.

Efficacy of transcutaneous electrical nerve stimulation combined with mirabegron therapy compared with mirabegron monotherapy for overactive bladder: a prospective randomized controlled study.

The objective was to evaluate the efficacy of transcutaneous electrical nerve stimulation (TENS) combined with mirabegron therapy compared with mirabegron monotherapy in the treatment of female patients with overactive bladder (OAB). In this randomized controlled study, 100 female outpatients with OAB were screened. Among these patients, 86 who met the inclusion criteria were randomly divided into the TENS combined with mirabegron treatment group and mirabegron monotherapy treatment group, with 43 patients in each group. The voiding diary, Overactive Bladder Symptom Score (OABSS), Overactive Bladder Questionnaire Symptom Bother Score (OAB-q SBS), total health-related quality of life (OAB-q HRQoL), and treatment satisfaction-visual analog scale (TS-VAS) score before and after treatment were recorded to evaluate the efficacy of OAB treatment. Seventy-nine of the 86 patients (40 in the TENS plus mirabegron group and 39 in the mirabegron monotherapy group) completed 12 weeks of treatment. TENS combined with mirabegron therapy was superior to mirabegron monotherapy in improving the primary endpoints, including the daily number of micturition episodes and the daily MVV/micturition and secondary endpoints, including the daily number of urgency episodes, the OABSS, the OAB-q SBS, the HRQoL score and TS-VAS score. There were no statistically significant differences in urgency urinary incontinence and nocturia between the groups. Some minor adverse effects were observed, including muscle pain, local paresthesia and constipation. The combination of TENS and mirabegron was more effective than mirabegron alone in the treatment of female patients with OAB. ChiCTR2400080528 (31.01.2024, retrospectively registered).

P.041 3 year longitudinal health related quality of life in a spinal muscular atrophy cohort

Background: Spinal Muscular Atrophy (SMA) is a rare, genetic disorder marked by motor neuron degeneration, causing progressive muscle weakness. SMA significantly impacts patients and their families. This study investigates HRQOL in a longitudinal SMA cohort. Methods: The study used the Canadian Neuromuscular Disease Registry to examine HRQOL in children aged 6-10 years with genetically confirmed SMA. HRQOL was evaluated using the PedsQL™ Measurement Model. This tool is validated in children and adolescents with various health conditions. The PedsQL Neuromuscular Module which has been validated in SMA was also used. Results: Eight participants completed the PedsQL generic and Neuromuscular Module at timepoint 1 (TP1) and 2 (TP2). The mean scores at TP1 were 49.66 (SD=5.05) for the generic PedsQL and 61.06 (SD=18.37) for the Neuromuscular Module. At TP2, mean scores increased to 59.32 (SD=13.08) and 74.86 (SD=9.88), respectively. The overall mean change over the two timepoints was +9.66 (SD=15.16) for the Generic PedQL and +13.80 (SD=23.03) for the Neuromuscular Module. Six participants were on disease modifying treatment. Conclusions: HRQOL scores in SMA patients improved over the study period. The enhancement in HRQOL may indicate the positive impact of diseases modifying treatments of SMA that became available during that time.

Health-related Quality of Life in Patients With Liver Cirrhosis: A Randomized Study

BackgroundHealth-related quality of life (HRQoL) relates to how people perceive illness and treatment affects their physical health, emotional health, functional status, and social position. Along with clinical goals, HRQoL is significant. Therefore, the present study evaluates the effect of patient counseling and education on HRQoL of cirrhotic patients. MethodologyThis prospective study was conducted in a tertiary care center of coastal Karnataka, Kasturba Medical College, Manipal, Karnataka from October 2022 with a three-month follow-up. Patients with a confirmed diagnosis of liver cirrhosis visiting the outpatient department of age ≥18 were enrolled in the study and divided on the basis of compensated and decompensated cirrhosis. Patients were randomized into two groups i.e., case and control in compensated and decompensated group through the envelop method of randomization. The case group received patient education and counseling along with standard medical therapy. CLDQ was used to evaluate HRQoL scores on baseline and after the third month. ResultsA total of 104 patients were enrolled with a mean age of 53.49±11.25, with most being male (80.7%). Out of 104, 60 and 44 had compensated and decompensated cirrhosis. Case and control groups did not differ significantly on baseline. However, on follow-up, the compensated group showed significant improvement in abdominal symptoms, fatigue, and emotional functions. Meanwhile, the decompensated group showed significant improvement in activity, emotional function, and worry domain of CLDQ. Higher MELD scores were the significant factor associated with lower HRQoL scores. ConclusionPatient education and counseling positively impacted the fatigue, emotional, and worry domain of the CLDQ. Hence, the present study recommends making an effort to promote patient counseling and education via leaflets or videos.

P139 Self-assessment of scleroderma skin: validation of the PASTUL questionnaire

Abstract Background/Aims The PASTUL (Patient self-Assessment of Skin Thickness in Upper Limb) questionnaire was developed during the COVID pandemic to allow self-assessment of skin remotely in systemic sclerosis (SSc). The aim of this study was to validate PASTUL, evaluate responsiveness and assess impact of skin on quality of life. Methods SSc patients were included in four centres. The PASTUL questionnaire specifies a grading of skin (normal, mild, moderate, severe thickness (0-3)) at eight sites corresponding to the modified Rodnan Skin Score (mRSS) with maximum score assigned to each site. Validity was assessed by comparing PASTUL scores with mRSS assessed by trained rheumatologists. Health Related Quality of Life (EQ5D5L and SSc HRQoL) and Scleroderma Skin Patient reported Outcome (SSPRO) were collected for construct validity, using Pearson’s correlation coefficient (0-0.19 = negligible, 0.2-0.39 = weak, 0.4-0.59 = moderate, 0.6-0.79 = strong, 0.8-1.0 = very strong). Test-retest reliability was estimated using intraclass correlation coefficient (ICC). Patients were followed for six months. Results 149 patients were included, mean age 56.6 years (SD 13.2), 79.7% female, 78 (56.1%) had limited cutaneous SSc (lcSSc) and 61 (43.9%) diffuse cutaneous SSc (dcSSc). Mean disease duration was 12.8 years (SD 9.2), mean mRSS was 9.2 (SD 6.2). At baseline and six months follow-up, PASTUL and mRSS were strongly correlated (r = 0.63 and r = 0.78, p &amp;lt; 0.001, respectively). Test-retest reliability, assessed in 75 patients, was very good (ICC of 0.83, 95% CI 0.74-0.89, p &amp;lt; 0.001). Mean PASTUL scores were 9.3 (SD 6.2) at baseline and 8.5 (SD 6.6) at six months follow-up. In patients with &amp;gt;2 points increase in mRSS, change in PASTUL was significant (p = 0.042). The standardized response mean (SRM) of mRSS and PASTUL in patients with clinically significant change in HRQoL (&amp;gt;0.082) was 0.29 and 0.24, respectively. Correlation between PASTUL and mRSS was moderate in lcSSc and strong in dcSSc (r = 0.54 p &amp;lt; 0.001, and 0.63 p &amp;lt; 0.001, respectively). In patients with disease duration &amp;lt; 4 years, PASTUL was very strongly correlated with mRSS (r = 0.84, p &amp;lt; 0.001), and strongly correlated with HRQoL (EuroQoL, r= -0.67, p = 0.004). SSPRO scores were not correlated with mRSS or PASTUL, but were moderatedly associated with SSc HRQoL scores (r = 0.425, p &amp;lt; 0.001). Conclusion Our preliminary results show that PASTUL is a valid and feasible outcome tool that adds a self-reported measure of skin severity to impact assessments like SSPRO. HRQoL was associated with skin thickening in patients with early disease. SRM was low and needs further assessment in a larger group. Disclosure J. Spierings: None. V.H. Ong: None. P.M.J. Welsing: None. M. Hughes: None. J.D. Pauling: None. F. Del Galdo: None. A.L. Herrick: None. C.P. Denton: None.

The relationship between resting metabolic rate and quality of life is moderated by age and body composition in women: a cross-sectional study

BackgroundHealth-related quality of life (HRQOL) is related to body composition, which is also related to resting metabolic rate (RMR). RMR can be increased by exercise and diet interventions that are not dependent on changes in body composition, so a link between RMR and HRQOL may provide interventions that directly improve HRQOL in women.MethodsOne hundred twenty women (median age 63.5 [IQR: 53.0–71.0] years) completed one-time measurement of body composition (multi-frequency bioelectrical impedance), RMR (handheld calorimetry), and HRQOL (RAND-36). Physical (PCS) and mental (MCS) composite scores were calculated for the RAND-36. Pearson correlations were used to identify relationships between RMR, body composition, and HRQOL. Variables at the p < .01 level were entered into multiple regression models.ResultsMedian body mass index was 26.1 [IQR: 23.2–30.9] kg/m2 and median lean mass index was 16.1 [IQR: 14.6–17.3] kg/m2. Body composition consisted of fat mass (median 27.2 [IQR: 20.3–34.7] kg) and lean mass (median 42.7 [IQR: 38.2–46.9] kg). Median RMR was 1165.0 [IQR: 1022.5–1380.0] kcal/day. Median HRQOL scores were PCS (84.0 [IQR: 74.0–93.0]) and MCS (85.0 [IQR: 74.3–90.0]). RMR was not directly related to PCS, but was directly and negatively related to MCS (p = .002). RMR was significantly and positively related to body composition (lean mass: p < .001; fat mass: p < .001), body mass index (p = .005), and lean mass index (p < .001); but only fat mass (PCS: p < .001; MCS: p < .001) and body mass index (PCS: p < .001; MCS: p < .001) were related to HRQOL, although the relationship was negative. In addition, age was found to be significantly negatively related to RMR (p < .001) and PCS (p = .003). Regression models confirmed the moderating influence of age and body composition on the relationship between RMR and HRQOL. RMR, age, fat mass, and body mass index explained 24% (p < .001) of variance in PCS; and RMR, fat mass, and body mass index explained 15% (p < .001) of variance in MCS.ConclusionIn women, the relationship between RMR and HRQOL is moderated by age and body composition. Understanding these pathways will allow clinicians and researchers to direct interventions more effectively.

Is smokeless tobacco use associated with lower health-related quality of life? A cross-sectional survey among women in Bangladesh.

Bangladesh has 22 million adult users of smokeless tobacco (ST). The prevalence among women is higher (24.8%). Health-related quality of life outcome (HRQoL) for ST use is little known. We investigated the association between HRQoL and daily ST use among adult women in Bangladesh. Using multi-stage design, a cross-sectional survey was conducted. Adult women (randomly selected) were surveyed from 4 purposively selected divisions (Dhaka, Chittagong, Khulna and Rangpur). Female ST users and non-users were compared using HRQoL scores. Self-perceived Visual Analogue Scale (EQ-VAS) values and HRQoL scores were modelled to examine their association with ST use. A total of 2610 women (1149 users and 1461 non-users) were surveyed. The proportion reported any type of problem in all health dimensions was significantly higher among female ST users than non-users (mobility: 43.3% vs 19.5%, self-care: 29.6% vs 11.9%, usual activities: 48.7% vs 21.8%, pain or discomfort: 69.8% vs 40.6%, and anxiety or depression: 61.3% vs 37.5%). The average HRQoL scores were 0.79 (95% CI: 0.78-0.81) and 0.90 (95% CI: 0.89-0.90) for users and non-users, respectively. Moreover, EQ-VAS average values were significantly higher for non-users [80.7 (95% CI: 79.9-81.6) vs 70.27 (95% CI: 69.2-71.2)]. Controlling the sociodemographics, ST use significantly reduced the HRQoL score by an average of 0.15 points. The EQ-VAS values on average decreased by 0.04 points for ST use. ST use is significantly associated with the HRQoL of females in Bangladesh. Considering the higher prevalence of ST, especially among women, HRQoL hazards need to be communicated for awareness building.

Investigating the Health-related Quality of Life in Hepatitis C Patients with Liver Cirrhosis Using Oral Antivirals, Before and after the Treatment

Objectives: Liver Cirrhosis is a debilitating chronic complication of many liver diseases including hepatitis C virus infection. Oral treatment of anti-viral infection can have effect alleviation this complication. The present study was conducted to measure the effect of oral antiviral treatment on the health-related quality of life in the patients with chronic hepatitis C.Methods: A before and after the treatment intervention setting clinical trial was setup. Patients included cases of clinically hepatitis C with liver cirrhosis. Oral antiviral drugs were administrated as intervention. The quality of life was measured using Chronic liver disease questionnaire (CLDQ) before treatment and after treatment. Patient demographics, treatment information, and HRQoL scores were collected.Results: A total of 65 patients with hepatitis C and liver cirrhosis were included in the study. The mean score of the patients’ quality of life and all its dimensions, 12 weeks after treatment with oral antiviral drugs, was on average 23.59 points higher than before, and this difference was significant (p&lt;0.001). Significant improvements were observed in all dimensions of HRQoL, including emotions, worries, systemic symptoms, abdominal symptoms, activity, and fatigue (p &lt; 0.001). No significant correlations were found between the mean difference in HRQoL scores and age or disease duration (p &gt; 0.05). Conclusions: The present study shows that the use of oral antiviral drugs can improve the health-related quality of life. Health care providers can use the results of the study to plan regarding the treatment and care measures which increase the quality of life in hepatitis C patients.

Health-related quality of life measures in patients undergoing decompressive craniectomy for severe traumatic brain injury: a 6-year follow-up analysis

Purpose We aimed to assess the long-term neurological outcomes and the functionality and QoL in patients undergoing decompressive craniectomy for severe traumatic brain injury, respectively. Materials and methods Among the 120 patients who underwent decompressive craniectomy for severe TBI between 2002 and 2007, 101 were included based on the inclusion criteria. Long-term follow-up results (minimum 3 years) were available for 22 patients. The outcomes were assessed using the Glasgow Outcome Scale (GOS) and the functionality and HRQoL were assessed using the Short Form-36 (SF-36) (v2) and Quality of Life After Brain Injury (QoLIBRI) questionnaires. Results Among the patients with severe TBI, 62 (61.4%) died and 39 (38.6%) were discharged to either home or a physical therapy facility. Eleven of the thirty-nine patients could not be reached and were excluded from the final analysis. The mean GOS of the remaining 28 patients was 4.14 ± 0.8 after 6.46 ± 1.64 years of follow-up. The HRQoL was assessed in 22 of the 28 patients. The HRQoL scores were lower in patients with TBI than in healthy controls. Furthermore, there was a significant difference in the HRQoL scores in patients with improved GOS scores than in those with unimproved GOS scores. Conclusions Health-related outcome scores could help clinicians understand the requirements of survivors of severe TBI to create a realistic rehabilitation target for them. QoLIBRI served as a good way of communication in these subjects.