Impact Quality Of Life Research Articles

Assessing impact of postoperative outcomes and quality of life on decisional regret after resection of pancreatic ductal adenocarcinoma.

699 Background: Surgery is potentially curative for patients with localized pancreatic ductal adenocarcinoma (PDAC). Given the high rate of complications, decline in quality of life (QoL) postoperatively, and high rates of recurrence, clear preoperative communication and expectation setting is critical. This study investigates clinical outcomes that affect postoperative decisional regret (DR) in patients with PDAC. Methods: This mixed-methods study investigates the impact of clinical outcomes and QoL on the degree of DR in patients with PDAC who have undergone curative-intent resection at least 6 months prior to study recruitment. Patients completed validated surveys assessing DR and QoL by the European Organization for Research and Treatment of Cancer (EORTC). Groups are stratified by presence or absence of DR, assessed by the Decisional Regret Scale (DRS). Characteristics and survey scores were compared by chi-square, independent t-test, and median test. Narrative responses were thematically analyzed. Given significant findings, results of this interim analysis are reported below. Results: 45 patients met inclusion criteria and completed all questionnaires. 19 (42.2%) patients expressed regret about their decision to pursue curative-intent surgery, with 5 patients expressing moderate to severe regret (DRS ≥ 25). There was no significant difference in median postoperative timing of survey completion between groups (56 months in DR group vs 34 months, P=0.465). Baseline characteristics, medical treatments, and operative approaches were similar. Both groups had similar recurrence rates at time of survey completion. While 30 and 90 day readmission rates were similar, a greater proportion of the DR group had 30 day complications (42.1% vs 15.4%, P=0.045). Those expressing regret reported poorer physical functional status (mean score 79.30 ± 18.84 vs 92.31 ± 10.27, P=0.011) and greater impact on social activities (mean score 67.54 ± 33.55 vs 84.67 ± 19.19, P=0.038). Thematic analysis of narrative responses revealed that a majority of patients expressed a strong desire to have a greater focus on potential QoL changes during preoperative discussions. Conclusions: Patients expressing postoperative DR experienced more 30 day complications, and still report lasting effects on their current physical status and social activities. This emphasizes the importance of thorough preoperative counseling on surgical risks and potential changes in postoperative QoL so that patients may make the best informed decision.

Comparison of efficacy between micro-osteoperforations and alveolar corticotomies on the rate of orthodontic tooth movement: A systematic review and meta-analysis.

Micro-osteoperforations and corticotomies are two surgical techniques commonly used to increase the rate of tooth movement. The aim of this systematic review was to respond to the question: Which method used for accelerating orthodontic tooth movement, micro-osteoperforations or alveolar corticotomy, produces a higher rate of tooth movement and present less adverse effects? Searches were performed in the electronic databases of PubMed, Scopus, Cochrane CENTRAL, Web of Science, Lilacs and Science Direct, as well as grey literature (Opengrey), up to March 2024. All the included studies were controlled, randomized clinical trials, cohort, case-control, cross-sectional, and multicentre studies of patients treated with orthodontics and corticotomies or micro-osteoperforations. Cochrane Collaboration risk of bias tool was used for quality assessment. For the quantitative analysis, studies were analyzed with a mixed-effect (random effect) meta-regresion model, with beta coefficients and R2 values, with I2 index and with Q and Egger tests. 31 articles were included for the qualitative analysis and 17 for the quantitative analysis. The rate of tooth movement of the corticotomy was 0.539mm per month (CI95%: 0.117,0.961) higher than with micro-osteoperforations, being the values statistically significant (p=0.012) but in a context of strong heterogeneity (89.6%). Adverse effects such as pain, quality of life impact and swelling were reported to be longer and harder after corticotomies. After corticotomy a greater rate of tooth movement has been observed during canine retraction compared to micro-osteoperforations. However, more well-designed randomized clinical trials directly comparing both techniques are needed. REGISTRATION NUMBER: CRD42020156448.

Prevalence and predictive factors of chemotherapy-induced peripheral neuropathy in cancer patients: A cross-sectional single-center study in Pakistan.

Chemotherapy-induced peripheral neuropathy is a debilitating pain condition resulting from cancer treatment and is known to be associated with a decrease in health-related quality of life. This single-center cross-sectional study, conducted at Institute of Nuclear Medicine Oncology and Radiotherapy (INOR), Abbottabad, Pakistan, assessed the prevalence and severity of chemotherapy-induced peripheral neuropathy and its impact on quality of life in cancer patients undergoing chemotherapy. Patients completed the European Organisation for Research and Treatment of Cancer QLQ-C30 and QLQ-CIPN20 questionnaires. Subscales are scored from 0 to 100, with higher scores indicating greater symptom severity. A total of 154 patients participated, with a mean age of 48.57 years (SD 14.22); 33.8% were male and 66.2% were female. The prevalence of sensory CIPN was 36.4%. The mean scores for the sensory, motor, and autonomic subscales of the QLQ-CIPN20 were 23.2 (SD 19.1), 16.6 (SD 15.8), and 14.8 (SD 17.2), respectively. CIPN symptom severity was negatively correlated with global health status/quality of life and physical, role, emotional, cognitive, and social functioning. There was no significant association with age, sex, body surface area, height, weight, or type of chemotherapeutic agent used. However, symptom severity increased with the number of treatment cycles completed (e.g., sensory, p = 0.003). CIPN was prevalent in this healthcare center and significantly impacted function and quality of life. These findings highlight the importance of developing strategies to mitigate CIPN and the need for routine screening of CIPN.

Comparative efficacy and safety of the novel Picosecond Alexandrite Laser and the traditional combined Q-switched and long-pulse Nd: YAG lasers in melasma treatment: a randomized evaluator-blinded trial

Melasma significantly impacts life quality, and while various laser therapies show promise, rigorous comparative studies, especially between the novel Picosecond Alexandrite Laser (PSAL) and the traditional combined modality of Q-switched and Long-pulse Nd: YAG Lasers (QLNYL), are notably lacking. This study aims to fill this gap by evaluating the efficacy and safety of these modalities, providing insights into their comparative advantages for clinical practice. In a prospective, evaluator-blinded study, 40 participants with Fitzpatrick Skin Types (FST) III and IV underwent three treatment sessions at four-week intervals with either PSAL or QLNYL. Efficacy was primarily assessed by changes in Melasma Area and Severity Index (MASI) scores at baseline, 4, 8, 12, and 24 weeks, along with patient satisfaction evaluations at the 12- and 24-week marks, and safety assessments conducted throughout the study. Both groups experienced significant reductions in MASI scores post-treatment. Overall, the improvement in MASI scores in the QLNYL group significantly surpassed that in the PSAL group (P = 0.010). Patient satisfaction was comparably high between groups, and no significant differences were noted in safety profiles. The PSAL group showed a slightly higher incidence of adverse reactions (not significant) and significantly higher pain scores (P = 0.018). Recurrence rates at the 24-week follow-up were 10.5% for PSAL and 0% for QLNYL, with no significant difference. Both PSAL and QLNYL proved effective in treating melasma, with the traditional combined modality of QLNYL demonstrating superior efficacy in FST III-IV. Safety profiles were similar comparable.

P1188 Real-world quality of life experience of subcutaneous infliximab use in children with Inflammatory Bowel Disease (IBD) at a tertiary paediatric centre

Abstract Background Subcutaneous infliximab (SC-IFX) use offers relative pharmacokinetic stability and efficacy and safety profiles comparable to intravenous-infliximab (IV-IFX) in adult patients with IBD (1-4). Regular hospital admissions for infusions have an impact Quality of Life (QoL), impacting work and school commitments as well as increasing financial burden. Aim to assess tolerability and QoL in patients switched from IV to SC infliximab collected 12 weeks after the switch. Methods A prospectively identified cohort of 33 children with IBD commenced 120mg fortnightly SC-IFX dosing between February to July 2024 in an Australian tertiary paediatric IBD service. QoL and medication tolerability questionnaires (SIAQ and Costs For Patient’s questionnaire) included assessment of tolerability, convenience, satisfaction along with data about travel time and costs were completed at week 12. Assessment of disease activity, inflammatory biomarkers and therapeutic drug monitoring occurred 4 weekly for the first 12 weeks. Results 31(94%) patients completed the 12-week study treatment period. 21 patients (68%) responded to the QOL questionnaires. Satisfaction with SC treatment was 20 (95%) across respondents, only 1 patient reporting ‘somewhat dissatisfied’ experience. 18 (85%) described ease of administration, with 3 (14%) finding injections "not easy". Respondents described financial impacts to be greatest, followed by time-commitment for attendance, loss of school and work time for attendance for infusions. Nearly 2/3 caregivers required formal leave from employment to facilitate infusion attendance, and 1/3 of patients required full day off school. 100% described a definite or probable willingness to continue SC injections beyond the 12-week period. Conclusion We describe the largest cohort of children with IBD prescribed SC-IFX with short-term follow-up. There was high treatment persistence with the drug. QOL data demonstrates high patient satisfaction, with positive impacts on patient quality-of-life with treatment described. Our real-world experience of paediatric SC-IFX use suggests this well tolerated and preferable alternative to IV-IFX dosing in children in with IBD. Further large-cohort and long-term paediatric data is required. References 1)Schreiber S, Ben-Horin S, Leszczyszyn J et al. Randomized Controlled Trial: Subcutaneous vs Intravenous Infliximab CT-P13 Maintenance in Inflammatory Bowel Disease. Gastroenterology 2021; 160: 2340-53. 2)Buisson A, Nachury M, Bazoge M et al. Long-term effectiveness and acceptability of switching from intravenous to subcutaneous infliximab in patients with inflammatory bowel disease treated with intensified doses: The REMSWITCH-LT study. Aliment Pharmacol Ther 2024; 59: 526-34. 3)Gianolio L, Armstrong K, Swann E et al. Effectiveness of Switching to Subcutaneous Infliximab in Pediatric Inflammatory Bowel Disease Patients on Intravenous Maintenance Therapy. J Pediatr Gastroenterol Nutr 2023; 77: 235-9. 4)Gianolio L, Armstrong K, Swann E et al. OC5 Effectiveness and safety of switching to subcutaneous infliximab in paediatric inflammatory bowel disease patients on established intravenous biosimilar infliximab maintenance therapy: real world data from a regional cohort. Frontline Gastroenterology 2024; 15: A4-A.

Gait patterns in unstable older patients related with vestibular hypofunction. Preliminary results in assessment with time-frequency analysis

Background Gait instability and falls significantly impact life quality and morbi-mortality in elderly populations. Early diagnosis of gait disorders is one of the most effective approaches to minimize severe injuries. Objective To find a gait instability pattern in older adults through an image representation of data collected by a single sensor. Methods A sample of 13 older adults (71-85 years old) with instability by vestibular hypofunction is compared to a sample of 19 adults (21-75 years old) without instability and normal vestibular function. Image representations of the gait signals acquired on a specific walk path were generated using a continuous wavelet transform and analyzed as a texture using grey level co-occurrence matrix metrics as features. A support vector machine (SVM) algorithm was used to discriminate subjects. Results First results show a good classification performance. According to analysis of extracted features, most information relevant to instability is concentrated in the medio-lateral acceleration (X axis) and the frontal plane angular rotation (Z axis gyroscope). Performing a ten-fold cross-validation through the first ten seconds of the sample dataset, the algorithm achieves a 92,3 F1 score corresponding to 12 true-positives, 1 false positive and 1 false negative. Discussion This preliminary report suggests that the method has potential use in assessing gait disorders in controlled and non-controlled environments. It suggests that deep learning methods could be explored given the availability of a larger population and data samples.

Geometric Study and Clinical Case Series for Mandible Reconstruction With a Single-Piece Scapular Free Flap.

Virtual surgical planning (VSP) with simple cutting templates could help surgeons preoperatively plan scapula reconstructions in the vertical and horizontal orientations. Virtually, eight defects were created in ten healthy mandibles and reconstructed with the subject-specific scapula vertically and horizontally. In the clinical series, 15 single-piece scapula mandible reconstructions planned with in-house VSP and guided with simple templates were compared with 15 freehand reconstructions. Virtually, the vertical placement outperformed the horizontal placement in dice score (DSC) and Hausdorff-95 for all but one defect. Clinically, the VSP cohort had shorter operative time (386.6 ± 111.6 min vs. 268.9 ± 50.6 min, p = 0.002), fewer tracheostomies (73% vs. 15%, p = 0.002), lower length of hospital stay (16.6 ± 13.5 days vs. 12.2 ± 8.1 days, p = 0.319), and higher complete/partial union to a non-significant degree (78% vs. 100%, p = 0.471). A single-piece scapula free flap is a versatile option for mandibular reconstruction. VSP has time and cost savings potential and quality of life impact that should be further investigated.

Olfactory impairment in Italian patients with chronic rhinosinusitis with nasal polyps: a patient-centered survey.

Chronic rhinosinusitis with nasal polyps (CRSwNP) is an inflammatory condition characterized by persistent nasal obstruction, discharge, facial pressure, and olfactory dysfunction. CRSwNP significantly impairs quality of life (QoL), with olfactory loss being a particularly distressing symptom that affects food enjoyment, personal safety, and social interactions. This study investigated the experiences of Italian patients with CRSwNP. A cross-sectional quantitative and qualitative survey (Google Forms questionnaire), collecting data on diagnosis, symptomatology, QoL impact, and treatment experiences was developed and distributed. There were 155 respondents, with over half diagnosed with CRSwNP for more than a decade. Nasal obstruction was the primary symptom leading to medical consultation. Corticosteroid therapy and surgery showed limited and variable effectiveness in olfactory restoration. Biologic therapy, particularly dupilumab, demonstrated promising results, with approximately half of the patients reporting complete smell restoration. CRSwNP significantly affected patients' QoL, with olfactory dysfunction being a common and impactful symptom. While current treatments provide symptom relief, they do not always result in sustained olfactory improvement. Biologic therapy emerged as a promising option for olfactory restoration, underscoring the importance of personalized treatment strategies. Further research is warranted to explore the mechanisms of olfactory recovery and to optimize treatment protocols for CRSwNP.

Changes in Subjective Cognitive and Social Functioning in Parkinson's Disease from Before to During the COVID-19 Pandemic.

Background/Objectives: Social isolation and health-related consequences of the COVID-19 pandemic may have significantly impacted quality of life in people with Parkinson's disease (PwPD). The effect of the COVID-19 pandemic specifically on subjective cognition and social functioning in PwPD is poorly understood. We conducted a longitudinal analysis of changes in subjective cognitive and social functioning in PwPD before (T1, 2017-2019) and during (T2, 2021) the COVID-19 pandemic. Methods: At T1, 347 PwPD completed online surveys. At T2, 123 of them (54 males, 69 females) responded to follow-up questionnaires including Quality of Life in Neurological Disorders (Neuro-QoL) subscales, Beck Depression Inventory-II, Parkinson's Anxiety Scale, motor and non-motor experiences of daily living from the MDS-Unified Parkinson's Disease Rating Scale, and the Coronavirus Impact Scale. Results: T1-T2 declines in subjective cognition and social functioning both were correlated with more anxiety, fatigue, and motor symptoms. Additionally, declines in subjective cognition correlated with depression, and with decline in social functioning. Women reported greater COVID-19 impact than men, unrelated to cognition and social functioning; in men, personal experience with COVID-19 was associated with decline in subjective cognition. Conclusions: Our finding that subjective cognition and social functioning are associated with different motor and non-motor symptoms of PD suggests that the impacts of PD on subjective cognition and social functioning are complex, which has important implications for treatment.

Social Determinants of Uncorrected Distance and Near Visual Impairment in an Older Adult Population.

Uncorrected visual impairment (VI) significantly impacts life quality and exacerbates age-related health issues. Social determinants of health (SDOH) are associated with uncorrected VI, but quantitative evidence is limited. This study investigated the link between SDOH and uncorrected VI among aging adults to identify disparities and improve vision care. We used data from the Atherosclerosis Risk in Communities (ARIC) study visits 4 and 6 and the ancillary Eye Determinants of Cognition (EyeDOC) study. We included subjects who were >70years old and extracted their sex, race, residence, household income, education level, having an eye doctor, health insurance status, and Area Deprivation Index (ADI) and vision outcomes. Uncorrected VI was categorized into uncorrected distance (UDVI) or near visual impairment (UNVI). Associations between SDOH indicators and VI were evaluated using logistic regressions. Among 967 adults (mean ± SD age, 78.6 ± 4.35years; 37.9% male), UDVI was found in 293 and UNVI in 186. Living in Jackson, MS, was associated with lower odds for UNVI (adjusted odds ratio [aOR] = 0.36; 95% CI, 0.20-0.65). Higher odds for UNVI were associated with male sex (aOR = 2.01; 95% CI, 1.41-2.87), low educational attainment (aOR for not completing high school = 2.32; 95% CI, 1.37-3.92; aOR for high school only = 1.92; 95% CI, 1.26-2.92), no eye doctor (aOR = 1.58; 95% CI, 1.05-2.39), and having government health insurance only (aOR = 1.48; 95% CI, 1.00-2.17). Associations between SDOH factors and UDVI were weaker or non-existent. This study links SDOH factors to uncorrected VI among older adults. SDOH should be considered when designing interventions to reduce VI in vulnerable communities.

Assessing eczema severity: A comprehensive review of scoring systems

Eczema, a chronic inflammatory skin condition, requires accurate severity assessment for effective management, and research. This review highlights the importance of various standardized scoring systems used in eczema management including Eczema Area and Severity Index (EASI), SCORing Atopic Dermatitis (SCORAD), Investigator’s Global Assessment (IGA), Patient-Oriented Eczema Measure (POEM), and Atopic Dermatitis Severity Index (ADSI).These scoring systems evaluate disease extent, severity, and quality of life impact, guiding treatment decisions, monitoring disease progression, and comparing outcomes across studies. Technology integration, including mobile apps and digital platforms, enhances scoring data collection and analysis. Scoring systems play a vital role in eczema management, enabling personalized, evidence-based care, and improving patient outcomes. Continued development and refinement of these tools will help guiding the management of of patients with eczema.

Examining the Influence of Optimal Guideline-Directed Medical Therapy on Patient-Reported Outcomes in Adults With Heart Failure

Background Multidrug, guideline-directed medical therapy (GDMT) improves mortality and hospitalizations for heart failure (HF), but little is known about how optimization of multidrug GDMT influences patient-reported outcomes. Trials of single GDMT medications demonstrate improvements in patient-reported outcomes; however, the effect of the multidrug GDMT regimen on patient-reported outcomes is unclear. Objective The objective of this study is to determine how multidrug optimization during a multidisciplinary, advanced practice provider HF clinic impacted patient-reported symptoms and quality of life in adults with HF. Methods This retrospective cohort study examined patient-reported outcomes at baseline and 12 weeks during a multidrug GDMT optimization clinic for HF. Outcomes were compared across time and male and female sex. Quality of life was measured with the EQ5D. Symptoms were measured using the PROMIS-29 and PROMIS-Dyspnea Severity score. Descriptive statistics describe sample characteristics. Paired and independent t tests were used for comparisons. Results Of 301 adults with HF enrolled in a clinic, 101 completed patient-reported outcome measures at baseline and 12 weeks. Patients (predominantly White/Caucasian males; mean age, 59 years) reported significant improvement in the EQ5D domains of mobility and performance of usual activities, and PROMIS-29 subscales for physical function, fatigue, and ability to participate in social roles. Sex differences were noted for pain and depression, with females reporting improved pain and males reporting slightly less depression. Conclusions Multidisciplinary, advanced practice provider–led optimization clinics can promote optimization of multidrug GDMT that can improve patient-reported outcomes in adults with HF. Future studies are needed to comprehensively examine sex differences in patient-reported response to GDMT and patient-reported response to updated, “quadruple-therapy” GDMT recommendations.

HIV Patients' Mindfulness Moderates How Death Anxiety and Depression Impact Life Quality.

Many people living with HIV (PLWH) experience death anxiety and depression, which may impact negatively on their health-related quality of life (HRQoL). Mindfulness is a psychological resource that protects against death anxiety and depression and promotes HRQoL. Although a direct association among these variables exist, little is known about their interactive effect. This study examined the role of PLWH mindfulness in the relationship between (a) death anxiety and HRQoL, and (b) depression and HRQoL. Participants included 311 HIV patients (199 women, 122 men, mean age = 30.52) selected from a tertiary healthcare institution in Nigeria. They completed relevant measures. Results showed that mindfulness moderated the effect of death anxiety on HRQoL. Mindfulness also buffered the effect of depression on HRQoL. Clinical efforts to improve HRQoL of PLWH should consider mindfulness-based training program due to its potentials in mitigating the effects of death anxiety and depression on health and recovery.

Clinical Evaluation, Patch Testing, and Quality of Life Assessment in Patients With Cosmetic Dermatitis.

Background Cosmetics have become an integral part of the contemporary lifestyle. Contact dermatitis (CD) is an inflammatory skin disease resulting from exposure to an external chemical present in cosmetics. A patch test is considered the criterion standard method for detecting CD. CD has been demonstrated to be detrimental to the quality of life (QoL). Objective The present study aims to investigate the clinical-epidemiological profile of CD and identify the possible allergens involved in it through patch testing. We also aim to assess the impact of QoL on patients presenting with CD. Methodology A total of 65 patients with CD were enrolled in the study. A comprehensive history of cosmetic products was obtained, along with dermatological and systemic examination. Patch testing was done to identify possible allergens with the Indian Cosmetic and Fragrance series and allergens from the Indian Standard Battery as and when required. A quality-of-life assessment was done using the Dermatology Life Quality Index (DLQI) questionnaire. Results The mean age of the patients was 43.2 ± 11.9 years, with a high preponderance of females (40; 61.5%). The most common cosmetic used was hair dye (45; 69.2%), followed by moisturizer/lotion/cream (23; 35.4%) and soap/shampoo/cleanser (16; 24.6%). The most prevalent site of allergy was the face (53; 81.5%), followed by the scalp (35; 53.8%), eyelids (33; 50.8%), and neck (22; 33.8%). The most common allergen was para-phenylenediamine (22; 33.8%), followed by fragrance mix (10; 15.4%) and Kathon CG (methylchloroisothiazolinone + methylisothiazolinone) (8; 12.3%). The mean DLQI score was 8.61 ± 5.36. Most patients had mild to moderate DLQI scores (45; 69.2%). Conclusion The present study was a prospective study that analyzed the clinical-epidemiological profile and impairment of QoL in CD. We identified the possible allergens involved in cosmetic CD by patch testing with the Indian cosmetic and fragrance series. We also assessed the impact on the quality of life in patients with cosmetic dermatitis. Further multicentric studies with ample sample sizes are required to validate the findings of this study.

Development of proactive care model for patients with chronic kidney disease stage 4–5 to clinical outcomes and quality of life: an action research

ABSTRACT Background Patients with chronic kidney disease often struggle to control clinical symptoms and need help from the healthcare team. This study aimed to develop a proactive care model for stage 4–5 chronic kidney disease patients and investigate its effectiveness on their clinical outcomes and quality of life in Thailand. Methods The study was a comprehensive, collaborative effort conducted in North Thailand involving a multidisciplinary team of healthcare professionals. This team, which included physicians, professional nurses, pharmacists, and nutritionists from the Chronic Kidney Disease Clinic at a secondary hospital, worked together to develop and implement a proactive care model for stage 4–5 chronic kidney disease patients. The research instruments used were a proactive care model for CKD stages 4–5 patients, the clinical outcomes assessment form, and the Kidney Disease Quality of Life Short Form. Quantitative data were analyzed using descriptive statistics, Chi-Square, and dependent t-tests, while qualitative data were analyzed using content analysis. Results The proactive care model for patients with chronic kidney disease stage 4–5 consists of 1) a multidisciplinary team providing chronic kidney disease standards, 2) providing knowledge and counseling for behavior change, and 3) supporting self-management of patients with chronic kidney disease. After the experiment, mean systolic blood pressure, diastolic blood pressure, and mean potassium were significantly lower than before, and Hematocrit significantly increased. In contrast, glomerular rate, fasting blood sugar, and hemoglobin A1C did not change after the intervention compared to before (p > .05). After the experiment, patients’ overall quality of life significantly increased. Conclusions This study demonstrated that the proactive care model for Chronic Kidney Disease stage 4–5 patients significantly improved clinical outcomes and profoundly impacted quality of life. Therefore, all components of the proactive care model should be applied, including working as a multidisciplinary team and helping patients adjust their behaviors and manage their health.

FC15 Psoriasis in skin of colour patients: where are we now?

Abstract Psoriasis is a chronic immune-mediated inflammatory disease affecting individuals across all races and ethnicities with reports of varying prevalence in different populations. Apart from similarities, there are nuances in various aspects of psoriasis in populations with skin of colour (SOC) as well as disparities in access to care and research.1 Our objective was to further understand the unique characteristics of plaque psoriasis in SOC patients. A literature search from January 2018 until August 2023 in Pubmed/MEDLINE and Cochrane Library was performed. Level of evidence for each study was assessed using the Oxford Centre for Evidence-Based Medicine recommendations and only studies with a level of evidence of I–III were included. The prevalence of plaque psoriasis is higher in White populations compared with those with SOC, although the disease is more severe, with higher body surface area affected and with a greater impact on quality of life in the latter group. The clinical picture in SOC patients may vary as lesions can appear as violaceous/grey and postinflammatory pigmentary alteration is a common associated feature. High-impact site involvement might be more common and more severe in patients with SOC. In terms of management, disparities in care have been reported. Data about the use of biologics or oral small molecules have shown similar efficacy and safety profiles across self-identified racial and ethnic groups. Psoriasis has been shown to have a greater impact on quality of life (QoL) in patients with SOC and new QoL tools that are more culturally appropriate for SOC patients may be required for use in global populations. Historically, access to clinical care and research has been more limited in people with SOC due to multiple factors. Inclusion of representative patient populations in registration trials has not changed significantly over the last years; however, postmarketing studies specifically involving SOC populations in North America have recently emerged. A limitation of our study is the lack of a universal definition and use of terms, such as ethnicity, race and SOC. In conclusion, racial and ethnic variations in epidemiology, clinical presentation, access to care, and QoL impact in psoriasis have been reported. However, data involving global populations with SOC are limited. This study raises awareness about the need to better understand psoriasis in patients with SOC so as to improve patient care globally.

EE608 Assessing the Economic Burden of Rare Disease Across Europe: A Health Economic Study of Financial and Quality of Life Impacts

EE608 Assessing the Economic Burden of Rare Disease Across Europe: A Health Economic Study of Financial and Quality of Life Impacts

Quality of life and clinical gout assessments during pegloticase with and without methotrexate co-therapy: MIRROR randomized controlled trial exploratory findings.

Pegloticase lowers serum urate (SU) but is limited by anti-drug antibodies. Methotrexate (MTX) co-administration increases urate-lowering response rate and decreases infusion reaction risk. This is of importance in uncontrolled gout patients who have few treatment options and highly impacted quality of life (QOL). Here, we report exploratory QOL/clinical endpoints of MIRROR RCT (NCT03994731). Patients with uncontrolled gout (sUA ≥ 7 mg/dl, urate-lowering tehraoy (ULT) failure/intolerance, and ≥1 gout sign/symptom [≥1 tophus, ≥2 flares in past year, chronic gouty arthritis]) were administered pegloticase (biweekly 8 mg infusion; 52 weeks) with oral MTX (15 mg/week) or placebo co-therapy. Key exploratory outcomes included change from baseline (CFB) in Physician Global Assessment of Gout [PhGA, score: 0-10], CFB in tender/swollen joint counts [TJC/SJC, score: 0-68/0-66], and gout chronic response rate (GCR50, GCR70; 50%/70% reduction in ≥3 of TJC, SJC, HAQ-Health, HAQ-Pain). Least-square mean (±S.E.) CFB to week 52 was estimated using a mixed model for repeated measures. In total, 100 patients were randomized to pegloticase + MTX; 52 to pegloticase + PBO. At baseline, patients had poor overall health (HAQ-Health [MTX, PBO]: 44.9 ± 28.6, 39.1 ± 27.4; PhGA: 5.5 ± 2.1, 5.4 ± 2.2) and many affected joints (TJC: 5.4 ± 7.8, 6.7 ± 8.4; SJC: 8.3 ± 12.2, 11.0 ± 15.9). QOL progressively improved during treatment, with similar CFB at week 52 in MTX vs. PBO groups in PhGA (-4.2 ± 0.2 vs. -3.8 ± 0.3) and TJC/SJC (-6.1 ± 0.5 vs. -7.0 ± 0.8/-5.1 ± 0.4 vs. -6.0 ± 0.6). However, at week 52, more MTX patients met GCR50 (58.0% vs. 38.5%) and GCR70 (52.0% vs. 30.8%) criteria. In the MIRROR RCT, pegloticase treatment with or without MTX co-therapy led to meaningful clinical/QOL improvements in uncontrolled gout patients. However, patients receiving MTX co-therapy had greater benefits because of a higher sustained SU-lowering rate (60.0% vs. 30.8% in the PBO group at week 52). ClinicalTrials.gov, http://clinicaltrials.gov, NCT03994731.

A Cross-Sectional Evaluation of Disability in Inflammatory Bowel Disease Using IBD Disk in a Tertiary Center from Romania.

Background/Objectives: The management of inflammatory bowel disease (IBD) includes, besides the control of symptoms, the prevention of organ damage and the improvement of the overall disability. Methods: A single-centered, cross-sectional, non-interventional and population-based study was conducted between October 2023 and August 2024 in the Department of Internal Medicine 2 and Gastroenterology of Bucharest Emergency University Hospital to assess the disease disability and quality of life impact using IBD-disk and correlation with different parameters. Results: We included 112 patients; their mean age was 52.35 ± 16.67 years, with a disease duration of 114.9 ± 97.93 months. The majority of patients were represented by men (51.79%). We observed a strong correlation between the CDAI score and overall disability compared to the Mayo score for UC (p = 0.0068). Also, patients with CD and stenotic patterns, as well as the presence of extraintestinal complications, have associated high disability scores. Low hemoglobin levels are associated with high disability (p = 0.0164), while biological treatment is associated with low disability (p = 0.0481). Conclusions: IBD-disk can be used as a valuable tool to assess disability in patients with IBD, also in terms of the activity of the disease, but mostly in terms of the psychological burden of the disease.

Real-world data in lupus nephritis: results from a European survey on renal function testing and burden of disease progression

Objective Patients with lupus nephritis (LN), a severe renal manifestation of systemic lupus erythematosus, should be monitored for progression of chronic kidney disease to end-stage renal disease but data on renal function testing in LN patients are limited. This real-world analysis aimed to evaluate nephrologists’ use of renal function tests to support LN diagnosis and monitoring and to examine the impact of disease progression in LN patients in Europe. Methods Data were drawn from the Adelphi Lupus Disease Specific Programme, a cross-sectional survey of nephrologists and their next five consulting patients with LN in France, Germany, Italy, Spain, and the United Kingdom in 2021. Nephrologists provided demographic and clinical information for each patient and the same patients completed a self-reported questionnaire. Using a checkbox, patients provided informed consent to take part in the survey. Results Nephrologists (n = 72) provided data on 376 patients with LN. Estimated glomerular filtration rate (eGFR) or proteinuria testing was not undertaken in around 10% and 50% of these patients, respectively. Regression analysis predicted reduction in renal function (disease progression) following LN diagnosis whilst bivariate analyses showed significantly worse outcomes for patients with progressed disease: worse pain, fatigue, treatment satisfaction, and patient-reported health state and activity impairment. Conclusion Our study revealed lower-than-expected nephrologist-reported use of renal function testing to support diagnosis/monitoring of patients with LN in real-world clinical settings in Europe. Lower quality of life (QoL) was observed in patients with more progressed disease. Increased use of renal function testing is needed so that all LN patients are monitored closely to manage disease progression and avoid the associated QoL impact.