Quality Of Life Outcomes Research Articles

Quality of Life Outcomes Following Radioactive lodine 131 Therapy in Hyperthyroid Patients: Insights from the Thyroid Patient-Reported Outcome Questionnaire.

This study aimed to evaluate the impact of Radioactive iodine 131 (RAI 131) therapy on the quality of life (QoL) of patients with hyperthyroidism using the Thyroid Patient-Reported Outcome (ThyPRO) questionnaire and to quantify the extent of these improvements. This two-year, prospective, single-center study was conducted at the University Medical Faculty Hospital. Eighty-four patients (39 males and 45 females) diagnosed with hyperthyroidism due to Graves' disease, toxic multinodular goiter, or toxic adenoma received RAI 131 therapy at doses of 10, 15, 20, or 30 mCi. The ThyPRO questionnaire, consisting of 84 questions across 12 domains, was administered before treatment and six months post-treatment to assess QoL. The primary outcome was the change in ThyPRO scores. Significant improvements in all post-treatment QoL measures were observed in both males and females (p<0.001). The average age of the patients was 58.33±12.45 years. QoL improvements were consistent across all age groups (<50, 50-60, >60 years) and at all levels of hyperthyroidism severity (mild, moderate, and severe). All RAI 131 dose groups (10, 15, 20, and 30mCi) showed significant improvements in QoL, with no significant differences between dose groups. The correlation analysis revealed that age had a weak negative correlation with QoL improvement (r=-0.20, p=0.05), whereas thyroid hormone levels were significantly correlated with QoL improvement. Multiple regression analysis identified initial ThyPRO score and age as significant predictors of QoL improvement, whereas sex and RAI 131 dose were not significant predictors. RAI therapy significantly enhanced the QoL of hyperthyroid patients according to demographic and disease severity. These findings support the use of RAI 131 as a primary treatment for hyperthyroidism, highlighting the importance of personalized treatment approaches for optimizing patient outcomes. Future research should focus on long-term QoL outcomes and refine therapeutic strategies.

Effectiveness of relaxation techniques for stress management and quality of life improvement in cardiovascular disease and hypertensive patients: a systematic review

ABSTRACT Background and objectives Cardiovascular diseases (CVD) and hypertension are leading causes of morbidity and mortality worldwide, significantly affecting quality of life (QoL). Stress, anxiety, and poor psychological well-being often exacerbate these conditions, creating a vicious cycle. Relaxation techniques, including progressive muscle relaxation (PMR) and diaphragmatic breathing, assist in contracting and relaxing muscle groups to aid individuals in identifying and reducing physical tension and foster relaxation due to increased parasympathetic nerve activity, resulting in emotional tranquility. This systematic review explores the efficacy of relaxation techniques in reducing stress and improving QoL in patients with CVD and hypertension. Materials and methods The review adhered to PRISMA guidelines, searching five major databases (PubMed, EBSCOhost, Web of Science, PsychINFO, and Scopus) with a search time range from 2014 to 2024. This review has been registered on Open OSF (n) 6HYG9. Results The results from several studies highlight the positive effects of relaxation techniques on both cardiovascular health and psychological well-being. Various methods, such as PMR, breathing exercises, and biofeedback, significantly reduced blood pressure (BP), anxiety, and stress levels in hypertensive and cardiovascular patients. Additionally, interventions like Benson’s relaxation and jaw relaxation demonstrated improvements in patient QoL and cardiovascular health outcomes, underscoring the potential benefits of integrating relaxation techniques into treatment programs for heart-related conditions. Conclusions By targeting both the physiological and psychological aspects of the patient’s well-being, these methods contribute to improved BP regulation, reduced heart rate, and alleviation of anxiety and stress symptoms. When incorporated into cardiac rehabilitation programs, these techniques have shown positive effects on emotional well-being and overall QoL, making them a valuable tool for patients recovering from cardiovascular events or managing chronic CVD. More robust, high-quality studies are needed to refine the optimal methods, duration, and frequency of these interventions.

The first comparative analysis of open and robotic tracheobronchoplasty for excessive Central airway collapse.

Tracheobronchoplasty is an operation to treat excessive central airway collapse by stabilizing the posterior tracheal membrane. In 2020, our institution transitioned from the traditional open approach to the robotic-assisted tracheobronchoplasty in select patients. This retrospective cohort study compares postoperative complications and short-term outcomes for patients undergoing open versus robotic tracheobronchoplasty at a high-volume complex airway center. A retrospective review of all patients who underwent open tracheobronchoplasty (2018-2020) and robotic tracheobronchoplasty (2020-2023) was conducted. During the study period, 43 and 69 patients underwent robotic and open tracheobronchoplasty, respectively. Robotic tracheobronchoplasty had longer median operative times than open (8.4 vs 6.2 hours; p = <0.01). Both median ICU length of stay (1.0 vs 3.0 days, p = <0.01) and hospital length of stay (5.0 vs 7.0 days, p = <0.01) were shorter after robotic tracheobronchoplasty. There were no significant differences in major or minor complications, total Clavien-Dindo Score, estimated blood loss, discharge to home, and 30-day readmission. The robotic group had two reoperations during the index hospitalization and three conversions to open. There were no mortalities in either group. Short-term (3-month) functional and quality of life outcomes were equivalent between groups. In selected patients with severe and symptomatic excessive central airway collapse, robotic tracheobronchoplasty is a safe and feasible alternative to the traditional open approach. Patients undergoing robotic tracheobronchoplasty have shorter ICU and total hospital stays with equivalent complication rates. As the robotic approach becomes more prevalent, further comparative outcomes are necessary with longer follow-up to ensure durability of the robotic-assisted repair.

Preoperative ANemiA among elderly undergoing Major Abdominal surgery (PANAMA) is associated with early postoperative morbidity and worse quality of life outcomes.

Preoperative anemia is associated with poor outcomes, but less is known about its impact on quality of life (QoL). This study investigates the association between preoperative anemia and QoL in elderly undergoing major abdominal surgery. This prospective observational study was conducted from 2017 to 2021 in a tertiary hospital's preoperative anesthesia clinic. QoL outcomes were assessed using the EuroQol 5-Dimension 3-Level (EQ-5D-3L) and the EuroQol-Visual Analogue Scale (EQ-VAS). Data was collected at baseline, 1-, 3-, and 6-month postoperatively. Patients were included if they were 65years or older, could provide written informed consent and were planned for elective major abdominal surgery. Patients were excluded if they were going for organ transplant surgery. A total of 469 patients were analyzed, of which 176 (38%) had anemia. There was no significant difference across varying anemia severity in EQ-5D-3L dimensions of mobility, self-care, usual activities, and pain/discomfort. Moderate-to-severe anemic patients generally have more issues across EQ-5D-3L dimensions. At baseline, these patients exhibited more issues with self-care (3%), pain/discomfort (13%), and anxiety/depression (19%), along with a lower mean EQ-VAS score of 77. However, there was a significant improvement in mobility, usual activities, and pain/discomfort over time. EQ-VAS score significantly improved for all groups of patients over time. The dimensions of EQ-5D-3L and EQ-VAS scores improved as the severity of anemia decreased. Preoperative anemia is associated with a significant decrease in QoL based on EQ-VAS. Recognizing and managing preoperative anemia may improve the recovery of elderly patients undergoing major abdominal surgery.

Quality of Life Outcomes With a Risk-Based Precision Testing Strategy Versus Usual Testing in Stable Patients With Suspected Coronary Disease: Results From the PRECISE Randomized Trial.

The PRECISE (Prospective Randomized Trial of the Optimal Evaluation of Cardiac Symptoms and Revascularization) trial compared an investigational precision diagnostic testing strategy (n=1057) with usual testing (n=1046) in patients with stable chest pain and suspected coronary artery disease. Quality of life (QOL) outcomes were a prespecified secondary end point. We assessed QOL by structured interviews in all trial participants at baseline and 45 days, 6 months, and 12 months postrandomization. QOL assessments included angina-related QOL (19-item Seattle Angina Questionnaire [SAQ-19]), generic health status (EQ-5D), and a 4-item care satisfaction survey (at 45 days only). The prespecified primary comparison was the 6-month SAQ Summary score outcomes (scale, 0 to 100; higher scores indicate greater health status). QOL data collection rates were high, with 99% complete baseline SAQ scores and 86.5% complete at the 6-month primary comparison follow-up. All comparisons were made as randomized. At baseline, mean SAQ Summary scores were 70.9 in the Precision Strategy group (n=1050) and 70.4 in the Usual Testing group (n=1042). By 6 months, mean SAQ Summary scores had improved to 89.9 in the Precision Strategy group and 89.2 in the Usual Testing group, with a mean adjusted difference of 0.8 (95% CI, -0.3 to 2.0). The SAQ component scores showed similar improvement from baseline in both groups and no statistically significant or clinically meaningful differences between the 2 groups at any follow-up time point. By 6 months, 66% of patients in both groups were chest pain-free. EQ-5D visual analog scores also improved from baseline and showed no difference between groups during follow-up. Care satisfaction scores were high and similar at 45 days. In stable patients with symptoms suggesting coronary artery disease, angina-related and overall QOL improved substantially over the initial 6 months independent of the testing strategy assigned. URL: https://www.clinicaltrials.gov; Unique identifier: NCT03702244.

Quality-of-Life Outcomes Following Endoscopic Resection of Sinonasal Inverted Papilloma.

There is growing interest in assessing patient quality of life (QOL) following treatment of sinonasal tumors, including inverted papilloma (IP). We aimed to elucidate the natural history of postoperative QOL outcomes in IP patients treated with surgery. Cases of sinonasal IP treated surgically at 4 tertiary academic rhinology centers were retrospectively reviewed. SNOT-22 scores were used to evaluate QOL preoperatively and postoperatively (1, 3, 6, 12 months). Repeated-measures ANOVA assessed for differences in mean scores over time. Linear regression identified factors associated with QOL longitudinally. 373 patients were analyzed. Mean preoperative SNOT-22 score was 20.6 ± 20.4, which decreased to 16.3 ± 18.8 (p = 0.041) and 11.8 ± 15.0 (p < 0.001) at 1 and 3 months postoperatively, respectively. No further changes in SNOT-22 scores occurred beyond 3 months postoperatively (p > 0.05). When analyzed by SNOT-22 subdomains, nasal, sleep, and otologic/facial subdomain scores (all p < 0.05) demonstrated improvement at 12-month follow-up compared with preoperative scores; this was not observed for the emotional subdomain score (p = 0.800). Recurrent cases were associated with higher long-term SNOT-22 scores (β = 7.08; p = 0.017). Age, sex, degree of dysplasia, prior surgery, primary site, and smoking history did not correlate with symptoms (all p > 0.05). QOL outcomes related to IP resection are largely driven by nasal, sleep, and otologic/facial subdomains, though patients appear to experience enduring improvement as early as 3 months postoperatively. Recurrent disease is a major driver of negative QOL. 4 Laryngoscope, 135:579-585, 2025.

Evaluating single-level vs. multi-level lateral lumbar interbody fusion: Clinical outcomes and complications.

Lateral Lumbar Interbody Fusion (LLIF) treats lumbar degenerative diseases (LDD) with spinal alignment and decompression advantages but can cause sensory and motor disturbances, especially in multilevel procedures. This study compares single-level and multi-level LLIF focusing on sensory and motor disturbances, surgical duration, and quality of life (QOL). A retrospective review of 139 patients (84 males, 55 females; average age 70years) with LDD who underwent LLIF and posterior fixation between May 2018 and January 2023 was conducted. Patients were divided into two groups: 89 patients who underwent single-level LLIF and 50 patients who underwent multi-level LLIF (two or more levels). Data on demographics, surgical details, perioperative complications, and clinical outcomes, including pain scores (Numeric Rating Scales: NRS) and QOL assessments (Japanese Orthopaedic Association Back Pain Evaluation Questionnaire: JOABPEQ), were collected preoperatively and one year postoperatively. Statistical analysis was performed to compare the outcomes between the two groups. Patients who underwent multi-level LLIF had significantly longer operative times (145.1min vs. 98.9min, p<0.001) and higher estimated blood loss (126.5mL vs. 62.9mL, p<0.001) compared with the single-level group. Both groups significantly improved pain intensity and QOL, including NRS and JOABPEQ score, with no significant differences in perioperative complication rates (cage subsidence, motor paralysis, thigh pain/numbness) or revision rates (4% vs. 8%, p=0.396). Short-term clinical outcomes suggested that both single-level and multi-level LLIF effectively improved pain and QOL outcomes in patients with LDD.

Patient Competence, Recurrence, and Quality of Life Outcomes in Chronic Subdural Hematoma

Patient Competence, Recurrence, and Quality of Life Outcomes in Chronic Subdural Hematoma

Long-term motor function and quality of life outcomes in patients with alpha-mannosidosis: Data from two velmanase alfa extension studies over 10 years

Long-term motor function and quality of life outcomes in patients with alpha-mannosidosis: Data from two velmanase alfa extension studies over 10 years

Psychological and Quality of Life Outcomes Following Orthognathic Surgery: A Comprehensive Systematic Review

Psychological and Quality of Life Outcomes Following Orthognathic Surgery: A Comprehensive Systematic Review

Abstract WP119: Sex differences in longitudinal functional, neurological, cognitive, and quality of life outcomes in the year after first-ever ischemic stroke

Abstract WP119: Sex differences in longitudinal functional, neurological, cognitive, and quality of life outcomes in the year after first-ever ischemic stroke

Abstract TP190: Intracerebral Hemorrhage Laterality and Associations with Mood and Quality of Life Outcomes: A MISTIE III Substudy

Abstract TP190: Intracerebral Hemorrhage Laterality and Associations with Mood and Quality of Life Outcomes: A MISTIE III Substudy

Effect of Precise Pulmonary Rehabilitation Nursing Intervention Combined With Simultaneous Inhalation Therapy and Noninvasive Ventilation for Chronic Obstructive Pulmonary Disease Patients With Chronic Hypercapnic Respiratory Failure.

Chronic obstructive pulmonary disease (COPD) is a progressive heterogeneous pulmonary disorder with an increasing high prevalence, particularly in the older. The objective of this study is to assess the effect of noninvasive ventilation combined with simultaneous nebulization during precise pulmonary rehabilitation nursing intervention in COPD patients with chronic hypercapnic respiratory failure, compared to pulmonary rehabilitation nursing alone. In total, 240 elderly COPD patients with chronic hypercapnic respiratory failure were randomized controlled into either a precise pulmonary rehabilitation nursing model group (control group) or noninvasive ventilation coupled with simultaneous nebulization during pulmonary rehabilitation nursing (intervention group). For our evaluation, we considered general information, pulmonary function, exercise endurance, mental health, blood gas, inflammation, COPD severity, life quality, and overall efficacy of subjects before and on the 5-, 30-, 90-day intervention. The total effective rates were 95% and 77.5% in the intervention and control group, respectively. In detail, the intervention group showed statistically significant improvements in lung function, exercise endurance, psychological health, blood gas inflammation, overall severity, and quality of life outcomes, especially on the 90-day intervention (p < 0.001). The complex COPD patients with chronic hypercapnic respiratory failure may confer more gains from precise pulmonary rehabilitation nursing intervention combined with simultaneous inhalation therapy and noninvasive ventilation.

Outcomes Measures in Subarachnoid Hemorrhage Research.

Despite advancements in acute management, morbidity rates for subarachnoid hemorrhage (SAH) remain high. Therefore, it is imperative to utilize standardized outcome scales in SAH research for evaluating new therapies effectively. This review offers a comprehensive overview of prevalent scales and clinical outcomes used in SAH assessment, accompanied by recommendations for their application and prognostic accuracy. Standardized terminology and diagnostic criteria should be employed when reporting pathophysiological outcomes such as symptomatic vasospasm and delayed cerebral ischemia. Furthermore, integrating clinical severity scales like the World Federation of Neurosurgical Societies scale and modified Fisher score into clinical trials is advised to evaluate their prognostic significance, despite their limited correlation with outcomes. The modified Rankin score is widely used for assessing functional outcomes, while the Glasgow outcome scale-extended version is suitable for broader social and behavioral evaluations. Avoiding score dichotomization is crucial to retain valuable information. Cognitive and behavioral outcomes, though frequently affected in patients with favorable neurological outcomes, are often overlooked during follow-up outpatient visits, despite their significant impact on quality of life. Comprehensive neuropsychological evaluations conducted by trained professionals are recommended for characterizing cognitive function, with the Montreal Cognitive Assessment serving as a viable screening tool. Additionally, integrating psychological inventories like the Beck Depression and Anxiety Inventory, along with quality-of-life scales such as the Stroke-Specific Quality of Life Scale, can effectively assess behavioral and quality of life outcomes in SAH studies.

Effect of baseline geriatric and quality of life assessments on treatment outcomes in ECOG-ACRIN EA2186 (GIANT): A randomized phase II study of gemcitabine and nab-paclitaxel compared with 5-fluorouracil, leucovorin, and liposomal irinotecan in older patients with treatment-naïve metastatic pancreatic cancer.

676 Background: Data is lacking to guide the care of vulnerable older adults (OA) with newly diagnosed metastatic pancreatic adenocarcinoma (mPDAC). EA2186 trial demonstrated poor outcomes among vulnerable OA with mPDAC treated with dose-reduced chemotherapy. To understand the factors driving treatment outcomes in this patient population, we analyzed the correlation between baseline geriatric and quality of life (QOL) assessments and treatment outcomes. Methods: Vulnerable OA ≥70 yo with mPDAC, ECOG PS 0-2 were enrolled. Vulnerability was defined by screening geriatric assessment (GA) demonstrating mild abnormalities in function, comorbidities, cognition, or age≥80y. Pts were randomized to Arm A: Gemcitabine (1000mg/m2) + Nab-Paclitaxel (125mg/m2) q14 days or Arm B: 5-Fluorouracil (2400mg/m2 46hr) + Leucovorin (400mg/m2) + Liposomal Irinotecan (50mg/m2) q14 days. GA and QOL evaluations were completed at baseline and 3 time points. Secondary endpoints of the study included evaluating the correlation between baseline GA, QOL and treatment outcomes. Regression models were used to evaluate the associations between baseline GA and QOL factors, survival and grade 3 or higher toxicity, with 80% power to detect doubling in grade 3 toxicity for GA/QOL measures. Results: 176 pts (88 per arm) enrolled with median age 77 (range 70-90), 24% ECOG-0, 64% ECOG-1 and 12% ECOG-2. Pts were deemed vulnerable by cognition (46%), age (36%) or comorbidities (31.4%), with 35% meeting vulnerability criteria in ≥2 domains. No significant difference was seen in median OS (4.7 vs. 4.4 months; p=0.72) or ≥grade 3 toxicity rate (45.6% vs. 58.7%; p=0.10) between arms A and B, respectively. Strong correlation was found between OS and baseline instrumental activities of daily living score (HR 0.84; p=0.02), nutritional scores (HR 0.82; p&lt;0.0001), depression scores (HR 1.07; p=0.02), and scores of all QOL measures (HR 0.98; p&lt;0.0001). No correlation was found between OS and comorbidity, cognition, and Activities of Daily Living scores. After adjustment for age and PS, only baseline WBC level (OR=0.35; p=0.0054), and depression scores (OR=1.20 per score unit; p=0.021) and to a lesser extent FACT-G score (OR=0.98 per score unit; p=0.061) were found to correlate with rates of ≥grade 3 toxicity. Conclusions: Baseline GA and QOL factors among vulnerable older adults with mPDAC correlate strongly with survival and treatment tolerance. Supportive care to address these factors may favorably affect outcomes in this patient population. Clinical trial information: NCT04233866 .

HEalth-Related Quality of Life-Intervention in Survivors of Breast and Other Cancers Experiencing Cancer-Related Fatigue and Associated Cognitive Symptoms Using TraditionAL Chinese Medicine: The 'HERBAL' Trial.

As pharmacological strategies remain limited for relieving fatigue and associated cognitive symptoms, integrative modalities such as traditional Chinese medicine (TCM) could be explored as therapeutic strategies in cancer survivors. Here, we evaluate and report the efficacy and safety of a TCM concoction, modified Xiang Bei Yang Rong Tang (XBYRT), on quality of life (QOL), cancer-related fatigue (CRF), and cognitive symptoms, compared to placebo. In a single-centered, randomized, double-blinded, placebo-controlled pilot trial conducted from 2019 to 2022, fatigued cancer survivors ≥21 years old were recruited to receive the XBYRT intervention or placebo (5% diluted) once daily for the duration of 8 weeks. Patient-reported outcomes for QOL, CRF, cognition, blood samples for biomarker testing, and adverse events were collected at baseline (T0), 4 weeks (T1), 8 weeks (T2), and 10 weeks (T3) after baseline. Linear regression was performed to evaluate differences between groups at T2 and T3. A total of 1502 patients were screened, with 672 patients considered eligible. Of the eligible, 15 XBYRT and 13 placebo subjects with similar mean ages (58.5 vs 58.4) were recruited. Both groups were predominantly Chinese (93% vs 62%), breast cancer patients (87% vs 62%), and diagnosed with stage 2 cancer (60% vs 46%). Although no significant difference was found in QOL between groups, the XBYRT group exhibited improved emotional fatigue at T3 (P = .045) and higher BDNF levels at T2 (P = .047) and T3 (P = .029). After baseline adjustment, XBYRT was associated with better perceived cognitive impairment at T2 (P = .011) and T3 (P = .017), as well as overall perceived cognitive function at T3 (P = .028). XBYRT is well tolerated, with grade 3 adverse events reported in three XBYRT (20%) and two placebo (15%) subjects. In this pilot study, XBYRT as an integrative therapy is safe and generates encouraging improvements in cognitive and fatigue symptoms. Difficulties with recruitment limited the generalizability of trial findings, thus findings should be verified through a larger, multi-centered trial.

Severity of skin disease strongly correlates with quality of life in people with psoriatic arthritis: a systematic review.

This systematic review aims to summarise the association between skin disease and quality of life (QoL) in people with psoriatic arthritis (PsA) and identify areas for future research and management. This review was registered on PROSPERO (CRD42024500994). Databases were searched for articles in English published until 7th January 2025. All study types were included except editorials, conference abstracts and reviews. Data gathered included demographics, treatment, type and severity of skin disease and QoL. Data were analysed using descriptive statistics and summarised using vote-counting. 2338 articles were retrieved with 18 ultimately included (10 cross-sectional; 7 observational cohort; 1 randomised controlled trial). A pooled total of 16,960 patients with PsA were included, with 48.1% male and mean age of 47.6years (SD 5.78). Tools for assessing psoriasis included the Psoriasis-Area-Severity-Index (PASI, n = 9), Body-Surface-Area (BSA, n = 7), with four using others, and several using a combination. PASI scores ranged from 2.6 (mild) to 9.88 (moderate); BSA was reported as ≥ 3%, 5-10%, or ≥ 10%. QoL was assessed using Dermatology-Life-Quality-Index (DLQI; n = 10); EuroQol-5 Dimension (EQ-5D; n = 3); 36-Item-Short-Form-Survey (SF-36; n = 3); and four studies used other measures. 13 studies reported an association between worse skin disease and poorer QoL in PsA. Three studies reported no association between severity of skin disease and quality of life, while two were undecided. This review highlights that there is an association between dermatological symptoms and QoL in PsA patients, even in milder disease, indicating the importance of multidiscplinary management to facilitate greater QoL and patient outcomes.

Self-compassion, mindfulness, and emotion regulation predict multiple dimensions of quality of life in US post-9/11 veterans.

Quality of life (QoL), defined by satisfaction, capacity for activities, and functional role performance, is an outcome of interest for both medical and psychological interventions. Among US veterans, QoL is lower than the general population and is associated with mortality and suicide. Third-wave psychosocial interventions (e.g., Acceptance and Commitment Therapy) emphasize QoL as the primary outcome of interest, and specific third-wave intervention targets (e.g., self-compassion, mindfulness, emotion regulation) may contribute to the satisfaction, capacity, and functional domains of QoL of veterans. To evaluate the longitudinal associations of self-compassion, mindfulness, and emotional regulation with three domains of QoL (psychosocial satisfaction, psychosocial capacity, and psychosocial relationship functioning) in US veterans. 351 US combat-deployed veterans self-reported measures of QoL, self-compassion, mindfulness, and emotional regulation at four timepoints across 24months. Bayesian multivariate multilevel models were fit to the QoL outcomes. Results indicated that all three domains of QoL remained relatively stable over the course of the study period. Increased psychosocial satisfaction and psychosocial capacity were both associated with increased mindfulness and emotion regulation, whereas self-compassion was only related to greater psychosocial capacity for male veterans. Increased functional role performances in romantic and family relationships were associated with increased emotion regulation, with romantic relationship functioning also being associated with increased mindfulness and family relationship functioning with increased self-compassion. These results suggest that mechanisms of third-wave interventions have an impact on QoL among US veterans and that veteran QoL may be improved by broader integration of mindfulness and emotion regulation-based interventions.

Quality-of-Life Measurement in Epidermolysis Bullosa. Position Statement of the European Academy of Dermatology and Venereology Task Force on Quality of Life and Patient-Oriented Outcomes and External Experts.

In this paper, the European Academy of Dermatology and Venereology (EADV) Task Force on Quality of Life (QoL) and Patient-Oriented Outcomes presents its position statements on health-related (HR) QoL assessment in epidermolysis bullosa (EB). The EADV TF on QoL and Patient-Oriented Outcomes recommends the use of the EB-specific instrument QOLEB in patients over the age of 10 years and, in addition to the QOLEB, the use of iscorEB-p in moderate-to-severe EB; the IntoDermQoL proxy instrument with its EB-specific module should be used in children aged under 5 years. The EB-specific instrument iscorEB-p, and the dermatology-specific instrument CDLQI may measure HRQoL in children with EB aged from 5 to 10 years. Dermatology-specific and/or generic HRQoL instruments should be used to compare the impact on QoL of EB with other diseases; family QoL of patients with EB should be studied using the EB-specific EB-BoD, dermatology-specific family measures, and/or generic family QoL instruments.

Medium term health and quality of life outcomes in a cohort of children with MIS-C in Cape Town, South Africa

BackgroundMultisystem inflammatory syndrome in children (MIS-C) is a disease that occurs after exposure to severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2). Its short-term effects have been documented but little data exist on the longer term effects of MIS-C on the health and quality of life (QOL) of patients. The objective of this study was to assess the long-term effects of MIS-C on the QOL of children.MethodsThis study was a descriptive prospective study. We included 24 participants with previous MIS-C and 20 children with juvenile idiopathic arthritis (JIA) as a positive comparator group. All children were examined and completed a paediatric quality of life (PedsQL) generic inventory score. This score was used to evaluate the School Functioning, Social, Emotional, and Physical QOL domains.ResultsAll participants with previous MIS-C made a full recovery, with no medical complaints, and normal physical examinations after a median of 705 days post acute diagnosis. The PedsQL inventory revealed that 16.7% of the children with previous MIS-C showed a deficit in the physical domain compared to 60% of the children with JIA (p &amp;lt; 0.001). 12.5% of the children with previous MIS-C had a deficit in their psychosocial domain which included emotional, social, and educational scores, compared to 40% of the children with JIA (p = 0.035).ConclusionsIn a cohort of 24 South African children with previous MIS-C, no medical complications were reported. A small proportion felt a prolonged effect on their QOL even after making a full recovery, although this was not as severe as children with JIA, a known chronic disease that affects QOL. This highlights the need to continue to follow up these patients and offer more comprehensive long-term care.