QOL Assessment Research Articles

Effect of Tai Ji and/or Qigong on patients with stable chronic obstructive pulmonary disease: A meta-analysis and systematic review.

Chronic obstructive pulmonary disease (COPD) is a global health problem with high morbidity and mortality. Tai Ji and Qigong are traditional Chinese meditative movements, benefit COPD patient's physical and mental health. We searched the following 7 databases Web of Science, EBSCO, Medline, PubMed, CINAHL, Cochrane Library online, and CNKI from inception to July 2023. Any RCTs managed with Tai Ji and/or Qigong on stable COPD were eligible without age, and comparison management restrict, however should be published in English. Outcome measures comprised pulmonary function, 6WMT, physical and/or cognitive function, and any assessment of people QoL. Tai Ji and/or Qigong significant increased %PredFEV1 on stable COPD people (MD: 3.46, 95% CI: 1.69-5.23), and 6MWT (MD: 45.07, 95% CI: 31.16-58.97). 5/6 studies reported a meaningful change in CAT/SGRQ total (MD: -4.04, 95% CI: -7.76 to -0.32; MD: -11.95, 95% CI: -21.22 to -2.68). However, 6MWT, CAT and SGRO total were debated on high heterogeneity. Tai Ji and Qigong increase %PredFEV1 and promote QoL. However, the evidences are not sufficient, a proper subgroup analysis should be considered.

Assessing Donor Site Morbidity and Impact on Quality of Life in Free Flap Microsurgery: An Overview.

Donor site morbidity remains a significant concern in free flap microsurgery, with implications that extend beyond immediate postoperative outcomes to affect patients' long-term quality of life. This review explores the multi-faceted impact of donor site morbidity on physical, psychological, social, and occupational well-being, synthesizing findings from the existing literature. Particular attention is given to the functional limitations, sensory deficits, aesthetic outcomes, and chronic pain associated with commonly utilized free flaps. Advancements in surgical techniques, including nerve-sparing and muscle-sparing methods, as well as innovations, like perforator flaps, have demonstrated the potential to mitigate these morbidities. Furthermore, the integration of regenerative medicine strategies, such as stem cell therapy and fat grafting, and technological innovations, including virtual reality rehabilitation and biofeedback devices, has shown promise in enhancing recovery and minimizing long-term complications. Despite these advances, challenges persist in standardizing QoL assessments and optimizing donor site management. This review emphasizes the need for a holistic, patient-centered approach in reconstructive microsurgery, advocating for further research to refine current strategies, improve long-term outcomes, and develop robust tools for QoL evaluation. By addressing these gaps, reconstructive surgeons can better align surgical objectives with the comprehensive well-being of their patients.

Evaluation of the Accuracy of IOL Calculation from the Standpoint of the Medical and Social Model of Health in Patients with Visually Intense Work and Bilateral Cataracts

Purpose: to compare the accuracy of IOL calculation from the standpoint of the social model of health (based on the study of “quality of life”, QOL) in patients with visually intense work (VIW) and bilateral cataract.Methods. We observed 108 patients with binocular cataract (216 eyes) aged 40 to 69 years (mean age 55.9 ± 1.4 years), everyday activities were characterized as VIW (at least 4 hours per day). All patients underwent (sequentially on both eyes) ultrasound phacoemulsification using the standard technique. All patients were operated on by the same surgeon (N.I. Ovechkin). To correct aphakia, a monofocal IOL “Flex HB Medicontur” (Switzerland) with a predicted emmetropic “target refraction” (TR) was implanted. All patients were divided into two groups: a group of patients (56 patients, 112 eyes) in which the IOL calculation was performed using the Kane formula (KF); a group of patients (52 patients, 104 eyes) in which the IOL calculation was performed using the Barrett Universal II formula (BU-II). The patients were examined 3 months after the second surgery based on a comparative study of refraction between the RC and the calculated one. The basic research method in relation to the target objectives of the work was a study of QOL using two questionnaires — Catquest-9SF and FEC22.Results. The data obtained indicate an insignificant, statistically insignificant trend towards improvement in traditional refraction indices and QOL according to the Catquest-9SF questionnaire when calculating IOL using the KF compared to BU-II. At the same time, these differences in relation to the assessment of QOL using the FEK-22 questionnaire are characterized by pronounced (by 2.3 %), statistically significant (p < 0.05) differences.Conclusion. The use (based on the original FEK-22 questionnaire) of the “medical and social” health model in the context of assessing the effectiveness of IOL calculation in VIW patients indicates a higher accuracy of the Kane formula compared to the Barrett Universal II formula. The identified differences are due to the fact that calculations using the Kane formula are performed in a comprehensive manner based on basic eye parameters, theoretical optics, regression analysis and, most importantly, artificial intelligence.

The Association Between Patient-Reported Outcomes and Surgical Attrition During Neoadjuvant Therapy for Gastrointestinal Malignancies.

Neoadjuvant therapy (NT) is increasingly used for gastrointestinal (GI) and hepatopancreatobiliary (HPB) cancers. Risk factors for surgical attrition during NT are poorly understood. A planned secondary analysis of patient-reported outcomes (PROs) from a prospective cohort study of patients undergoing NT was performed to identify factors associated with surgical attrition. Adult patients with GI/HPB cancer receiving NT were provided a mobile phone application administering QOL assessments every 30days and measuring mood/symptoms until NT completion. Univariate and multivariate logistic regression were performed to determine the association between demographic, clinical characteristics, and PROs with surgical attrition (no surgery (NS) versus surgery or watchful waiting (SWW)). Mixed-effects regression models evaluated trends of QOL and symptoms between the cohorts. Among 104 enrolled patients, mean age was 60.5 ± 11.5years, 57 (55%) were male, and 95 (91%) were Caucasian. After a mean duration of 3.4months of NT, 76 (73%) patients underwent SWW, while 28 (27%) did not (NS). Cancer type (HPB vs GI, OR 7.0, CI 2.7-19.3, p < 0.001), comorbidities (OR 1.72, CI 1.0-2.99, p = 0.05), and severe complications during NT (OR 4.2, CI 1.2-15.3, p = 0.03) were associated with NS. There were no differences between longitudinal QOL scoresor PROs among patients who underwent SWW versus NS except for the lack of appetite, which was associated with NS (OR 3.6, CI 1.0-12.2, p = 0.04). Among patients undergoing NT for GI/HPB malignancies, type of cancer, comorbidities, and severe complications during NT were associated with failure to undergo surgery, whereas QOL and PROs were largely not.

Abstract 207: Beyond the Hospital: Evaluating the Durability of Outcomes for Stroke Survivors Receiving Principal Illness Navigation Services

Introduction/Purpose Post‐acute navigation services for stroke survivors have started to emerge over the last few years, spurred on by high readmission rates and subpar quality of life in the months after stroke discharge. While there is limited but promising evidence related to the outcomes of these navigation services post‐stroke, there have been few studies that have reviewed the durability of outcomes such as longitudinal readmission rates, quality of life metrics or functional status. This study aims to assess the 6‐months and 1‐year post‐discharge outcomes for stroke patients receiving post‐acute of Principal Illness Navigation (PIN) services. Measures will include inpatient readmission rates, quality of life via the PROMIS Global 10 and the modified Rankin Scale. Materials/Methods This is a mixed methods design including the retrospective analysis of readmissions data via historical HIE and ADT feeds along with the assessment of QoL and mRS based on patient report (PROMIS Global and 1 question mRS, respectively). In addition, patient and care partner surveys were conducted at 6‐months and 1‐year to assess ongoing recovery challenges as well as the longitudinal impacts of participation in PIN services after hospital discharge following stroke. Results Our abstract will review inpatient readmission rates for patients who reached at least 6 months post‐discharge, and those who reached at least 12 months post‐discharge. We will compare these results to published benchmarks, reporting 12‐month readmission rates ranging from 30% to nearly 50%. We will also report on patient self‐reported health challenges, SDOH concerns, and ability to live independently at 6 and 12 months post‐stroke. Conclusion The findings from this study will highlight the potential durability and long‐term benefits of Principal Illness Navigation (PIN) services for stroke survivors, particularly in reducing readmission rates compared to published data. Stroke patients historically experience very high and recurrent readmissions, and persistent challenges related to ambulation, fatigue, mental health, and socioeconomic stressors. Our preliminary results suggest that PIN improves key outcomes and that there is still a need for ongoing, comprehensive support beyond the first year of recovery. Addressing these long‐term needs, particularly mental health, will be critical to further enhancing stroke survivors’ quality of life and functional independence.

A real-world study on the clinicopathological profile, treatment outcomes and health-related quality of life, anxiety and depression among patients with desmoid tumor at two tertiary care centers in India.

The medical management of DT comprises tyrosine kinase inhibitors (TKIs), hormonal agents, anti-inflammatory drugs with the recently approved gamma secretase inhibitor nirogacestat being the current standard of care. Real-world data on evolving treatment landscapes of DT remains scarce. This is a retrospective study of patients with DT registered between 1995 and 2020 at All India Institute of Medical Sciences, New Delhi and Tata Medical Center, Kolkata. Baseline characteristics were analyzed in form of median values and interquartile range. Categorical and continuous variables were compared by chi square and independent samples T- tests respectively. Anxiety, depression and QoL were prospectively measured among 30 patients using Hospital Anxiety and Depression (HADS) and Functional Assessment of Cancer Therapy-General (FACT-G) scales respectively between 2022 to 2023. 200 patients were included with a male-predominant (n=111, 55.5%) population and median age 26.5 (2.5-75) years. Extremity (n=100, 50%) and abdomen (n=65, 32.5%) were commonest primary sites and median of 2 (1-4) lines of treatment were received. First-line included surgery (n=116, 58%), systemic therapy (n=67, 33.5%), radiotherapy (10, n=5%) and active surveillance (n=7, 3.5%). First-line systemic agents included tamoxifen (n=55, 27.5%), imatinib (n=7, 3.5%), sorafenib (n=1, 0.5%) and chemotherapy (n=4, 2%). 2019 onward, 3% and 63% underwent active surveillance and surgery respectively. Best radiological response obtained with tamoxifen was stable disease (SD) (n=76, 59%) and partial response (PR) (n=31, 24.2%). Best radiological response obtained with sorafenib was PR (n=17, 60.7%) and SD (n=9, 32.1%). Thirty patients underwent HADS and FACT-G scale assessment. Mean HADS-Anxiety subscale score was 3.6 (+/-3.9 SD) and HADS-Depression sub-scale score was 2.6 (+/-3.5 SD) with clinically significant anxiety and depression in 2 (6.7%) patients each. The overall mean FACT-G score was 87.5 (+/-12.6 SD) and lower mean physical well-being (p=0.006) and emotional well-being (0.017) scores were significantly associated with higher HADS-anxiety (>/=8) scores. Assessment of anxiety, depression and QoL are paramount to gauge the psychological impact of DT. This study gives an overview of clinical and management profile of patients with DT in India, with limitations of selection bias, heterogeneous population and small sample size for QoL assessment.

Effect of Nutritional Status and Haemodialysis Parameters on Health Related Quality of Life and Post Dialysis Recovery Time in Prevalent Haemodialysis Patients

Abstract Background The majority of patients with an impaired renal function may be classified as to a certain stage of chronic kidney disease (CKD) progressing to end-stage renal disease (ESRD) and requiring renal replacement therapy (RRT). Aim of the Work To study the effect of current nutritional status of haemodialysis patients and other variables (socio-demographic, physical, biochemical and dialysis treatment parameters) on health related quality of life and post dialysis recovery time among haemodialysis patients in haemodialysis units in Desouq general hospital, Kafr-Elshiekh Governorate. Patients and Methods Type of Study: We conducted an observational cross-sectional study. Study Setting: The study was conducted in haemodialysis units in Desouq general hospital, Kafr-Elshiekh governorate. Study Period: from July to September in 2021. Study Population: 100 prevalent End Stage Renal Disease (ESRD) patients on regular haemodialysis 3 times per week in Desouq general hospital. Results The result of this study concluded that the factors affecting nutritional status for those patients were age &amp; dialysis wintage, serum HB, serum calcium, both serum albumin &amp; serum pre-albumin, intake of: (carbohydrate, potassium, calcium, phosphorous &amp; magnesium) &amp; anthropometric measurement of; (Weight, BMI, calf circumference, BSF, TSF, MAMC &amp; MAC). Also, our study concluded that the factors affecting QOL for our patients were; SGA score (as a surrogate for nutritional status), duration of session, serum albumin &amp; prealbumin, height, MAC, MAMC &amp;calf circumference. Patients with poor nutrition have a poor physical and mental quality of life. Hence, it becomes important (not only for us but also for them) to identify such patients and intervene earlier, in order to improve their quality of life and also reduce morbidity which in turn helps in reducing mortality. Conclusion Malnutrition is one of the most commonly encountered (&amp;treatable) problems in haemodialysis population in Egypt as it increases the morbidity and mortality. SGA (M- SGAS) and HRQOL SF 36 (Kidney Disease and Quality of Life--Short Form (KDQOL- SF™) version 1.3) are simple to use, bedside and readily available tools for nutritional &amp; QOL assessment of MHD patients, respectively.

Comparing Ribociclib versus Palbociclib as a Second Line Treatment in Combination with Fulvestrant in Metastatic Breast Cancer: A Randomized Clinical Trial.

Assessment of CBR, PFS, QOL and toxicity profile of palbociclib and ribociclib. This is an interventional concurrent randomised phase III open label clinical trial. It took place at the Oncology Centre Mansoura University, Egypt from July 2022 till December 2023. Patients with pathologically proved ER+ HER2- metastatic breast cancer who either progressed on adjuvant hormonal or progressed on 1st line hormonal for metastatic disease. Patients in arm A received palbociclib 125 mg/day orally for 3 weeks and 1 week rest, plus fulvestrant. Patients in Arm B received ribociclib at a dose of 600 mg, administered orally once daily for 3 weeks and 1 week rest, plus fulvestrant. Pre- and peri-menopausal women received the LHRH agonist goserelin. Patients who lost their endorsement and were considered to be lost to follow up. Quality of life was analysed using the (EORTC) quality-of-life questionnaire (QLQ)-C30 V3.0. Patients were asked to complete the questionnaires at screening; at the 2nd and 6th month. Toxicity was assessed and graded using (CTCAE) v5.0. Patients were evaluated clinically for response and toxicity monthly and radiologically by CT and tumor markers/ 3 months. Treatment continued until objective Progressive Disease (PD), symptomatic deterioration, unacceptable toxicity or death. Both arms had similar baseline characteristics. There was no statistically significant difference regarding the CBR (58.6% for both arms at 6 months and 13.8% in the palbociclib VS 17.2% in the ribociclib arm at 12 months). The median PFS to the whole population was 13 months. COX multivariate analysis revealed that postmenopausal had 2.85 more likely to survive than premenopausal patients. Patients with ECOG performance status 2 and 3 are 0.13 and 0.39 less likely to survive compared to patients with PS 1. Dose reduction increased the likelihood of survival 3.36 compared with no dose reduction. The median PFS was 13.67 months in the palbociclib arm and 12.69 months in the ribociclib arm with no statistically significant difference. During follow up, there was statistically significant improvement in insomnia in both arms and constipation in the palbociclib arm alone. Comparing the two arms, no statistically significant deterioration in the QOL domains except in fatigue and financial difficulties, with more deterioration in the palbociclib arm. Regarding common toxicities there was no statistically significant difference between the 2 arms. Both Ribociclib and palbociclib have similar CBR, PFS and toxicity profile.

(139) THE ARTIFICIAL URINARY SPHINCTER IMPROVES DEPRESSION, ANXIETY AND OVERALL EMOTIONAL HEALTH IN MEN WITH STRESS URINARY INCONTINENCE; ANALYSIS OF THE ARTIFICIAL URINARY SPHINCTER CLINICAL OUTCOMES TRIAL (AUSCO)

Abstract Introduction The artificial urinary sphincter (AUS) has been available for over 50 years with excellent outcomes for the treatment of male stress urinary incontinence (SUI). However, few reports focus on the effects an AUS may have on mental health in men with SUI. Objective We examined the effects on depression, anxiety and overall emotional health in patients treated for SUI with the AUS. Methods The Artificial Urinary Sphincter Clinical Outcomes Trial (AUSCO) is a single-arm, prospective, multi-center study designed to evaluate objective and subjective outcomes of men with SUI treated with the AMS 800 AUS. This was approved by each institutional committee on ethics in human investigation (NCT04088331). A total of 115 subjects were implanted at 17 sites. Subjects served as their own controls and follow-up assessments at 3-, 6-, and 12-months post device activation were compared to baseline values. The Incontinence QoL (IQoL), Incontinence Impact Questionnaire (IIQ-7), and EQ-5D-5L were administered at these intervals. Results Of the 115 implanted subjects, 100 completed QoL assessments at 12 months as of May 2024. Depression rating (Item 5, IQoL) significantly improved from baseline to 12 months, with 85% (85/100) of patients reporting feeling at least “a little” depressed at baseline decreasing to 39% (39/100) at 12 months (p &amp;lt; 0.0001). Emotional health rating (Item 6, IIQ-7) also improved, with 16% (16/100) patients reporting being “greatly” affected by incontinence at baseline decreasing to 3% (3/100) at 12 months (p &amp;lt; 0.0001). The anxiety/depression domain on the EQ-5D-5L (Item 5) was also significantly improved, with 50% (50/100) of patients reporting being at least “slightly” anxious or depressed at baseline decreasing to 30% (30/100) at 12 months (p = &amp;lt;0.0001) (Table). Conclusions The AUS has been commonly referred to as the “gold standard” for treatment of men with stress urinary incontinence for over half a century. While multiple reports focus on improvement in volume of leakage, fewer concentrate on quality of life with emphasis on its effects on depression and related mental health scores. This data clearly demonstrates that treatment of SUI in patients with the AUS improves depression symptoms and anxiety for these patients. Disclosure Yes, this is sponsored by industry/sponsor: Boston Scientific. Clarification: Industry initiated, executed and funded study. Any of the authors act as a consultant, employee or shareholder of an industry for: Boston Scientific.

“How long is life worth living for the horse?” A focus group study on how Austrian equine stakeholders assess quality of life for chronically ill or old horses

BackgroundQuality of life (QoL) provides a comprehensive concept underpinning veterinary decision-making that encompasses factors beyond physical health. It becomes particularly pertinent when seeking responsible choices for chronically ill or old horses that emphasise their well-being and a good QoL over the extension of life. How different stakeholders use the concept of QoL is highly relevant when considering the complexity of these decisions in real-life situations.MethodsSeven focus group discussions (N = 39) were conducted to gain insights into how stakeholders assess and use equine QoL in veterinary care decisions for chronically ill and/or old horses. The discussions included horse owners (n = 17), equine veterinarians (n = 7), veterinary officers (n = 6), farriers (n = 4), and horse caregivers (n = 5). The combination of deductive and inductive qualitative content analysis of the group discussions focused on identifying both similarities and differences in the views of these groups regarding QoL for old and/or chronically ill horses.ResultsFindings show agreement about two issues: the importance of the individuality of the horse for assessing QoL and the relevance of QoL in making decisions about veterinary interventions. We identified differences between the groups with respect to three issues: the time required to assess QoL, stakeholders’ contributions to QoL assessments, and challenges resulting from those contributions. While owners and caregivers of horses emphasised their knowledge of a horse and the relevance of the time they spend with their horse, the veterinarians in the study focused on the differences between their own QoL assessments and those of horse owners. In response to challenges regarding QoL assessments and decision-making, stakeholders described different strategies such as drawing comparisons to human experiences.ConclusionsDifferences between stakeholders regarding equine QoL assessments contribute to challenges when making decisions about the care of chronically ill or old horses. The results of this study suggest that individual and collaborative reflection about a horse’s QoL should be encouraged, for example by developing practicable QoL assessment tools that support relevant stakeholders in this process.

Prospective comparative study of quality of life in patients with bladder cancer undergoing cystectomy with ileal conduit or bladder preservation

ObjectiveTo compare health-related quality of life (HRQOL) in patients undergoing radical cystectomy with ileal conduit (RC) or bladder preservation (BP) with (chemo)radiotherapy for bladder cancer.Methods and analysisPatients with bladder cancer,...

Cardiac Health Assessment Using a Wearable Device Before and After Transcatheter Aortic Valve Implantation: Prospective Study.

Due to aging of the population, the prevalence of aortic valve stenosis will increase drastically in upcoming years. Consequently, transcatheter aortic valve implantation (TAVI) procedures will also expand worldwide. Optimal selection of patients who benefit with improved symptoms and prognoses is key, since TAVI is not without its risks. Currently, we are not able to adequately predict functional outcomes after TAVI. Quality of life measurement tools and traditional functional assessment tests do not always agree and can depend on factors unrelated to heart disease. Activity tracking using wearable devices might provide a more comprehensive assessment. This study aimed to identify objective parameters (eg, change in heart rate) associated with improvement after TAVI for severe aortic stenosis from a wearable device. In total, 100 patients undergoing routine TAVI wore a Philips Health Watch device for 1 week before and after the procedure. Watch data were analyzed offline-before TAVI for 97 patients and after TAVI for 75 patients. Parameters such as the total number of steps and activity time did not change, in contrast to improvements in the 6-minute walking test (6MWT) and physical limitation domain of the transformed WHOQOL-BREF questionnaire. These findings, in an older TAVI population, show that watch-based parameters, such as the number of steps, do not change after TAVI, unlike traditional 6MWT and QoL assessments. Basic wearable device parameters might be less appropriate for measuring treatment effects from TAVI.

A phase 1, open-label, dose escalation study on the safety and tolerability of ANK-101 in advanced solid tumors.

TPS2689 Background: IL-12 is a cytokine that can stimulate both innate and adaptive tumor immunity. Clinical trials of intravenous IL-12 demonstrated anti-tumor activity limited by significant systemic toxicity, including patient deaths. ANK-101 is an anchored immunotherapy that links IL-12 to aluminum hydroxide through an alum-binding protein (ABP). The ANK-101 complex anchors IL-12 in the tumor microenvironment (TME), resulting in prolonged local retention and low levels of systemic absorption. Preclinical studies in murine tumor models showed that ANK-101 is retained at the injection site for up to 28 days, recruits and activates T and NK cells, promotes M1 myeloid cell differentiation, induces regression of both injected and un-injected tumors, and induces immunologic memory. Methods: This is a first-in-human, open-label dose escalation study of ANK-101 in advanced solid tumors with a planned sample size of 12-36 participants. The first three dose escalation cohorts include a single participant, and then study enrollment follows a standard 3+3 dose escalation design. If no dose limiting toxicity (DLT) is observed, the dose level will be escalated until ≥1/3 or ≥2/6 patients experience a DLT. An additional ten patients will be enrolled at the recommended dose for expansion (RDE). Participants will be treated with intratumoral ANK-101 every 3 weeks for 4 cycles. Imaging or clinical assessments will be performed at week 12. If there is no significant clinical deterioration or unacceptable toxicity at this visit, participants may receive four more cycles. Eligible patients must have an advanced solid malignancy refractory to standard treatment and be accessible for injection and biopsy, measurable disease by RECIST v1.1, and ECOG PS of 0-1. Key exclusion criteria include tumors close to vital structures, uncontrolled bleeding disorders, and active autoimmune disease. Primary objectives of the study are to determine the safety and tolerability of ANK-101 and identify the RDE. Secondary objectives include pharmacokinetics (PK) and immunogenicity (ADA) of ANK-101 and clinical activity as measured by ORR, DCR, DOR and PFS by RECIST v1.1. Exploratory objectives include assessment of QOL using FACT-G and profiling immune-based pharmacodynamic (PD) changes. PD assessments will include serum cytokines and circulating immune cells, and local levels of PD-L1, CD8+ T cells, and CD68+ macrophages, and changes in gene expression within the TME. This clinical trial is in progress. Clinical trial information: NCT06171750 .

A Descriptive Study to Assess the Quality of Life of Patients Undergoing Hemodialysis in Sharda Hospital, Greater Noida

Background of the Study: Assessment of QoL of patients with ESRD and CKD has been serving a notable purpose in evaluating the influence of the disease on patients. ESRD is a chronic disease condition that significantly degrades a patient’s health-related QoL, mostly because it places barrier on a patient’s health and wellness inclusive of physical health, psychological health, and social health.  Aim of the Study: The main purpose of the research study is to assess the QoL of patients undergoing haemodialysis and to find out the relationship between QoL with selected socio- demographic variables. This study also examines the effects of haemodialysis on patient’s ability to perform activities of daily living (ADLs).  Methods: It is a descriptive study carried out among 50 patients of Sharda Hospital, Greater Noida. Non- probability convenience sampling technique was used. The data was collected through a WHOQOL-BREF assessment scale and a validated, self-designed socio- demographic tool.  Results: The result shows that there is a notable association (p&lt;0.05) between gender and QOL (i.e. males are having better quality of life than females.). Majority 48.0% of the patients describe their overall QoL as fair 38.0% describe it as bad and about 14.0% describe it as good.  Conclusion: The quality of life assessment revealed that approximately half of the patients who participated in the research have rated their quality of life as fair, while a significant portion considered it to be bad and a smaller percentage reported a good quality of life.  Activities of Daily Living: Collectively describes fundamental skills required to independently care for oneself, such as bathing, eating etc.

P.039 Informing treatment advancement and innovation in a tertiary care neurocritical care (NCC)) program

Background: Children with neurological injuries/insults carry the highest risk of death and disability in Pediatric and Neonatal ICUs. These patients comprise 25-30% of admissions and have a myriad of diagnoses. Longitudinal outcome data is required to inform treatment effects and innovation strategies. NCC at the Alberta Children’s Hospital (ACH) participates in acute, subacute, and long-term/outpatient management with an aim to use comprehensive clinical data to improve outcomes. Methods: A prospective, longitudinal, population-based observational cohort study of NCC patients from local NICUs, PICU, and a NCC follow-up program, with comprehensive data from clinical records, development scores and QoL assessments. Results: Since 2019, 929 patients have been enrolled including: 407 neonates, 167 infants, 106 preschool-age and 100 school-age children, and 152 adolescents. The most common reasons for NCC consult were paroxysmal events (36%), encephalopathy (27%) and neonatal HIE (20%). Conclusions: Our database encapsulates the diverse nature of NCC patients and has enabled cohort-specific studies (e.g., neonatal HIE and ECLS outcomes). Program evolution will further facilitate higher powered research studies through large enrollment, comprehensive data capture (with a provincial EHR), and longitudinal outcomes. Engagement with staff and families will also inform treatment and afford evidence-based counseling to families.

Item analysis on the quality of life scale for anxiety disorders QLICD-AD(V2.0) based on classical test theory and item response theory

BackgroundAnxiety disorders can cause serious physical and psychological damage, so many anxiety scales have been developed internationally to measure anxiety disorders, but due to the cultural differences and cultural dependence of quality of life between Chinese and Western cultures, it is difficult to reflect the main characteristics of Chinese patients. Therefore, we developed a scale suitable for Chinese patients with anxiety disorders: the Anxiety Disorders Scale of the Quality of Life Instruments for Chronic Diseases (QLICD-AD), hoping to achieve satisfactory QOL assessments for anxiety disorders.ObjectivesItems from the Anxiety Disorders Scale of the Quality of Life in Chronic Disease Instrument QLICD-AD system were analyzed using CTT and IRT to lay the groundwork for further refinement of the scale to accurately measure anxiety disorders.Methods120 patients with anxiety disorder were assessed using the QLICD-AD (V2.0). Descriptive statistics, variability method, correlation coefficient method, factor analysis and Cronbach’s coefficient of CTT, and graded response model (GRM) of item response theory were used to analyze the items of the scale.ResultCTT analysis showed that the standard deviation of each item was between 0.928 and 1.466; Pearson correlation coefficients of item-to-domain were generally greater than 0.5 and also greater than that of item-to-other domain; the Cronbach ‘s of the total scale was 0.931, α of each domain was between 0.706 and 0.865. IRT analysis showed that the discrimination was between 1.14 and 1.44. The difficulty parameter of all items increased with the increase of grade. But some items (GPH6,GPH8,GPS3,GSO2-GSO4,AD2,AD5) difficulty parameters were less than 4 or greater than 4. The average of information amount was between 0.022 and 0.910.ConclusionBased on CTT and IRT analysis, most items of the QLICD-AD (V2.0) scale have good performance and good differentiation, but a few items still need further revision. Suggests that the QLICD-AD (V2.0) appears to be a valid measure of anxiety disorders. It may effectively improve the diagnosticity of anxiety disorders, but due to the limitations of the current sample, further validation is needed in a broader population extrapolation trial.

Long-term outcomes in non-CAH 46,XX DSD.

Differences/disorders of sex development (DSD) comprise a large group of rare congenital conditions. 46,XX DSD, excluding congenital adrenal hyperplasia (CAH), represent only a small number of these diseases. Due to the rarity of non-CAH 46,XX DSD, data on this sex chromosomal aberration were confined to case reports or case series with small numbers of patients. As the literature is still relatively sparse, medical data on the long-term effects of these pathologies remain scarce. In this review, we aim to provide an overview of current data on the long-term follow-up of patients with non-CAH 46,XX DSD, by covering the following topics: quality of life, gender identity, fertility and sexuality, global health, bone and cardiometabolic effects, cancer risk, and mortality. As non-CAH 46,XX DSD is a very rare condition, we have no accurate data on adult QoL assessment for these patients. Various factors may contribute to a legitimate questioning about their gender identity, which may differ from their sex assigned at birth. A significant proportion of gender dysphoria has been reported in various series of 46,XX DSD patients. However, it is difficult to give an accurate prevalence of gender dysphoria and gender reassignment in non-CAH 46,XX DSD because of the rarity of the data. Whatever the aetiology of non-CAH 46,XX DSD, fertility seems to be impaired. On the other hand, sexuality appears preserved in 46,XX men, whereas it is impaired in women with MRKH syndrome before treatment. Although there is still a paucity of data on general health, bone and cardiometabolic effects, and mortality, it would appear that the 46,XX DSD condition is less severely affected than other DSD conditions. Further structured and continued multi-center follow-up is needed to provide more information on the long-term outcome of this very rare non-CAH 46,XX DSD condition.

Effect of myofascial release and muscle energy technique on patients with chronic neck pain: a scoping review.

To identify the effects of muscle energy techniques and myofascial release in patients with chronic neck pain. To conduct a literature search and identification; PRISMA-ScR guidelines were followed. Relevant articles were searched for from the following medical and health sciences electronic databases: PubMed, EBSCOhost, CENTRAL of the Cochrane Library, and the Physiotherapy Evidence-Based Database (PEDro). Patients with chronic neck pain were eligible for the scoping review. Seven articles were included in this review. This scoping review found that there is heterogeneity in the prescription of MFR and MET and a greater tendency to check three major physical dimensions (pain, range of motion, and disability). Various studies have opted for distinct intervention regimens, resulting in disparities in the frequency of weekly interventions, which can range from biweekly to five times a week. These inconsistencies may lead to perplexity among practitioners, as each intervention modality demonstrates favorable outcomes for individuals with persistent cervical discomfort. Moreover, a significant proportion of research projects have employed the numeric pain rating scale (NPRS) and visual analog scale (VAS) for data quantification. According to results, majority of the studies were focused on pain and missing components of range of motion and quality of life. Work-related factors can act as risk factors for chronic neck pain. Future investigations should adopt a comprehensive methodology and incorporate QoL assessments of quality of life.

Clinical Course, Treatment and Management of Generalised Pustular Psoriasis from a United Kingdom Extension of a Global Delphi Panel

This article presents the results of the UK extension of a previously conducted global Delphi panel on generalised pustular psoriasis (GPP). Five UK based dermatologists experienced in GPP management have expressed their level of agreement on 101 questionnaire statements addressing four aspects of GPP: clinical course and flare definition, diagnosis, treatment goals, and holistic management. Consensus was achieved for 89 of 101 statements (88%). Disagreement was detected on issues around the prognostic value of age, QoL assessment tools and the nature of comorbidities associated with GPP. Overall, the panelists corroborated the results of the global study and confirmed that the clinical algorithm derived from the global study is in accordance with the UK clinical practice.

Factors Associated with Health-Related Quality of Life Among Breast Cancer Survivors in Saudi Arabia: Cross-Sectional Study.

Assessment of health-related quality of life (HRQOL) is a major concern among breast cancer survivors. Little is known about HRQO and its determinants in Saudi women with breast cancer (BC). This study aimed to describe the HRQOL of Saudi women with breast cancer and the association between HRQO and sociodemographic and clinical variables. This cross-sectional study involved 147 BC participants who completed the 36-item Short Form Health Survey (SF-36). Multivariable linear logistic regression analysis was conducted to determine factors associated with HRQOL. For the physical component scale, general health scored the highest (55.41±17.99) while, role physical function scored the lowest (48.61±22.51). The mean scores in the mental component were higher for social function (56.91±20.84), while the lowest score was observed for energy and vitality (49.62±20.84). Significant differences were observed in many SF-36 domains across the sociodemographic and clinical variables. Older age, having had a mastectomy as well as comorbid conditions, and receiving chemotherapy and hormonal therapy were associated with decreased HRQOL. However, being physically active, employed, and having more education were associated with higher HRQOL. HRQOL is generally poor among breast cancer survivors in Saudi Arabia, depending on a variety of factors. These findings highlight the need for routine QOL assessment. Furthermore, recognizing these predictors may play a key role in maximizing HRQOL for breast cancer participants.