Disease-specific Quality Research Articles

Demonstrating responsiveness of the pediatric cardiac quality of life inventory in children and adolescents undergoing arrhythmia ablation, heart transplantation, and valve surgery.

Pediatric Cardiac Quality of Life Inventory (PCQLI) is a disease-specific pediatric cardiac health-related quality of life (HRQOL) instrument that is reliable, valid, and generalizable. We aim to demonstrate PCQLI responsiveness in children undergoing arrhythmia ablation, heart transplantation, and valve surgery before and after cardiac intervention. Pediatric cardiac patients 8-18 years of age from 11 centers undergoing arrhythmia ablation, heart transplantation, or valve surgery were enrolled. Patient and parent-proxy PCQLI Total, Disease Impact and Psychosocial Impact subscale scores were assessed pre- and 3-12 months follow-up. Patient clinical status was assessed by a clinician post-procedure and dichotomized into markedly improved/improved and no change/worse/much worse. Paired t-tests examined change over time. We included 195 patient/parent-proxies: 12.6 ± 3.0 years of age; median follow-up time 6.7 (IQR = 5.3-8.2) months; procedural groups - 79 (41%) ablation, 28 (14%) heart transplantation, 88 (45%) valve surgery; clinical status - 164 (84%) markedly improved/improved, 31 (16%) no change/worse/much worse. PCQLI patient and parent-proxies Total scores increased (p ≤ 0.013) in each intervention group. All PCQLI scores were higher (p < 0.001) in the markedly improved/improved group and there were no clinically significant differences in the PCQLI scores in the no difference/worse/much worse group. The PCQLI is responsive in the pediatric cardiac population. Patients with improved clinical status and their parent-proxies reported increased HRQOL after the procedure. Patients with no improvement in clinical status and their parent-proxies reported no change in HRQOL. PCQLI may be used as a patient-reported outcome measure for longitudinal follow-up and interventional trials to assess HRQOL impact from patient and parent-proxy perspectives.

50182 Evaluating disease specific quality of life and chemoprevention utilization in patients with more than one lifetime skin cancer

50182 Evaluating disease specific quality of life and chemoprevention utilization in patients with more than one lifetime skin cancer

Counseling Intervention and Cardiovascular Events in People With Peripheral Artery Disease

It is unclear whether counseling to promote walking reduces the risk of major adverse cardiovascular events (MACE) in people with peripheral artery disease (PAD). To test whether a counseling intervention designed to increase walking reduced the risk of MACE in patients with PAD. The BIP trial was a randomized clinical trial, with recruitment performed between January 2015 and July 2018 and follow-up concluded in August 2023. Participants with walking impairment due to PAD from vascular departments in the Australian cities of Brisbane, Sydney, and Townsville were randomly allocated 1:1 to the intervention or control group. Data were originally analyzed in March 2024. Four brief counseling sessions aimed to help patients with the challenges of increasing physical activity. The primary outcome was the between-group difference in risk of MACE, which included myocardial infarction (MI), stroke, and cardiovascular death. The relationship between Intermittent Claudication Questionnaire (ICQ) scores, PAD Quality of Life (PADQOL) scores, and MACE was examined with Cox proportional hazard regression analyses. A total of 200 participants were included, with 102 allocated to the counseling intervention (51.0%) and 98 to the control group (49.0%).Participants were followed up for a mean (SD) duration of 3.5 (2.6) years. Median (IQR) participant age was 70 (63-76) years, and 56 of 200 participants (28.0%) were female. A total of 31 individuals had a MACE (composed of 19 MIs, 4 strokes, and 8 cardiovascular deaths). Participants allocated to the intervention were significantly less likely to have a MACE than participants in the control group (10 of 102 participants [9.8%] vs 21 of 98 [21.4%]; hazard ratio [HR], 0.43; 95% CI, 0.20-0.91; P = .03). Greater disease-specific quality of life (QOL) scores at 4 months (ICQ: HR per 1-percentage point increase, 0.97; 95% CI, 0.95-0.99; P < .001; PADQOL factor 3 [symptoms and limitations in physical functioning]: HR per 1-unit increase, 0.91; 95% CI, 0.84-0.98; P = .01) and at 12 months (ICQ: HR per 1-percentage point increase, 0.97; 95% CI, 0.95-0.99; P = .003; PADQOL factor 3: HR per 1-unit increase, 0.91; 95% CI, 0.84-0.98; P = .02) were associated with a lower risk of MACE. In analyses adjusted for ICQ or PADQOL factor 3 scores at either 4 or 12 months, allocation to the counseling intervention was no longer significantly associated with a lower risk of MACE. This post hoc exploratory analysis of the BIP randomized clinical trial suggested that the brief counseling intervention designed to increase walking may reduce the risk of MACE, possibly due to improvement in QOL. anzctr.org.au Identifier: ACTRN12614000592640.

Long-term disease-specific quality of life after laparoscopic Nissen fundoplication in patients with borderline GERD

BackgroundHistorically, DeMeester score over 14.7 has been used to diagnose GERD. The 2022 American Gastroenterological Association clinical guidelines define GERD based on acid exposure time (AET) instead of DeMeester score. We aim to compare outcomes after laparoscopic Nissen fundoplication (LNF) in patients based on differing GERD diagnostic criteria.MethodsPatients who underwent first-time LNF between 2009 and 2017 were identified. Demographics, objective GERD evaluation, and outcomes were maintained in an IRB-approved database. Disease-specific quality of life was assessed with a survey (GERD-HRQL) with higher values representing more symptomatic disease. Descriptive statistics, Fischer’s exact test and logistic regression were used to analyze the data, p-value < 0.05.Results225 patients were stratified into two groups: borderline GERD (AET 4–6%, n = 25.11%) and GERD (AET ≥ 6%, n = 200.89%). The mean age was 50.1 ± 13.4 years and 169 (75%) were female. Baseline GERD-HRQL was lower in the borderline group (24.3 vs 30.0, p = 0.031). Short-term (5 weeks [IQR 4, 8]), medium-term (14 months [IQR 7.25, 31]) and long-term (6.75 years [IQR 5.5, 8]) follow-up was performed. GERD-HRQL scores did not differ between borderline and GERD patients at short-(6.0 vs 7.1, p = 0.630), medium-(12.0 vs 12.1, p = 0.818), or long-term follow-up (10.0 vs 9.0, p = 0.757). The absolute long-term improvement in GERD-HRQL was −12.3 (p = 0.022) vs. −21.3 (p < 0.001). At long-term follow-up there was no difference in PPI use (50% vs 47%, p = 0.852), satisfaction (58% vs 76%, p = 0.187), willingness to repeat the procedure given the benefit of hindsight (75% vs 85%, p = 0.386), or need for reoperation (14% vs 13%, p = 0.910).ConclusionBoth patients with borderline GERD and GERD achieve GERD-HRQL improvements at 7 years following laparoscopic Nissen fundoplication and demonstrate similar long-term PPI usage and satisfaction with surgical results. Borderline GERD patients have lower GERD-HRQL at baseline, and thus have smaller improvements in their QOL scores. Anti-reflux surgery should be considered for patients with a diagnosis of borderline GERD refractory to medical therapy.

Association of Lifestyle Behaviors with Quality of Life in Patients with COPD: A Cross-Sectional Study in Primary Care.

Background/Objectives: The association between healthy lifestyle behaviors and their effect on quality of life among patients with COPD remains unclear. Therefore, the aim of this study was to explore the lifestyle behaviors and their association with the disease-specific quality of life among a primary care population with COPD in Greece. Methods: This cross-sectional study included 236 participants aged 40 years and older from the COCARE COPD study. The healthy lifestyle index (HLI) was created based on smoking, alcohol consumption, BMI, physical activity, and sleep duration, with each factor categorized as either healthy (1) or unhealthy (0). The HLI ranged from 0 (least healthy) to 5 (healthiest). COPD-specific quality of life was assessed using the COPD assessment test (CAT), where higher scores indicate poorer health status. Multiple logistic regression was used to analyze the association between HLI and CAT scores, adjusting for confounders. Results: Half of the participants were non-smokers or former smokers, while 92% reported consuming low levels of alcohol (less than 14 units per week). Additionally, 56% had a BMI below 30, indicating they were not obese. Surprisingly, only 32% engaged in regular exercise, with at least 150 min per week, and only 25% reported getting adequate sleep, ranging from 7 to 9 h per night. Importantly, poorer health status was inversely associated with non/former smoking (OR: 0.543, 95% CI: 0.282-1.049), physical activity (OR: 0.238, 95% CI: 0.122-0.463), and adequate sleep (OR: 0.337, 95% CI: 0.160-0.710). Patients with higher HLI scores were less likely to have poor health status. Conclusions: In conclusion, our findings indicate that a significant proportion of patients with COPD failed to adhere to a minimum of three out of five healthy behaviors. Additionally, a higher number of healthy lifestyle factors defined by a high HLI score were independently associated with a better disease-specific quality of life. This is particularly important for COPD where quality of life is in the epicenter of management. Therefore, healthcare providers could significantly improve the management of COPD and patient outcomes by targeting and improving these lifestyle behaviors with targeted and holistic intervention strategies.

Resilience in Adult Coeliac Patients on a Gluten-Free Diet: A Cross-Sectional Multicentre Italian Study.

Data on resilience, the ability to recover from adversity, in coeliac disease (CeD) are lacking. To assess the degree of resilience in patients with CeD on a gluten-free diet (GFD), and its association with clinical features, sociodemographic factors, psychological morbidity, and quality of life (QOL). A cross-sectional multicentre Italian study was conducted on adult CeD patients between May 2022 and April 2023. Connor-Davidson Resilience Scale (CD-RISC), the Coeliac Disease-specific Quality of Life Scale (CD-QOL), the State-Trait Anxiety Inventory scale (STAI-Y), and the Beck Depression Inventory scale (BDI) were used to evaluate resilience, QOL, anxiety, and depression, respectively. A multivariate analysis was conducted to identify factors independently associated with the degree of resilience. A total of 305 patients (221 F, mean age at CeD diagnosis 36 ± 16 years) on a long-term GFD (median 8 years, IQR 3-17) were enrolled. A total of 298/305 patients (98%) had a high level of resilience (CD-RISC ≥ 35). At univariate analysis, resilience was statistically associated with male gender (p = 0.03), age at enrolment (p = 0.02), marital status (p = 0.03), QOL (p < 0.001), anxiety (p < 0.001), and depression (p < 0.001). On multivariate regression analysis, trait anxiety (STAI-Y2, p < 0.001) and depression (BDI, p = 0.02) were independent predictors of lower levels of resilience. Higher trait anxiety predicts lower levels of resilience. Targeted interventions in this subgroup of patients may be helpful for their management and follow-up.

Comparing mechanochemical endovenous ablation using Flebogrif with endovenous laser ablation in the treatment of primary great saphenous vein incompetence: protocol for a multicentre, open-label, non-inferiority, observer-blinded, randomised controlled trial (REBORN trial)

IntroductionEndovenous laser ablation (EVLA) is associated with an excellent outcome in the treatment of great saphenous vein (GSV) incompetence. However, the use of thermal ablation requires tumescent anaesthesia and is...

Effectiveness of ClariFix (Cryoablation) of the Posterior Nasal Nerve on Nasal Symptoms in Patients With Chronic Rhinitis: A Systematic Review and Meta-Analysis

Background and Objectives: The present study evaluated the efficacy of cryoablation of the posterior nasal nerve in alleviating symptoms associated with chronic rhinitis.Methods: A systematic review of pertinent literature sourced from PubMed, Scopus, Embase, Web of Science, and Cochrane databases was conducted through May 2024. The analysis focused on studies that appraised changes in quality of life and rhinitis-associated symptomatology before and after cryoablation treatment.Results: A total of seven studies (495 patients) were included in the analysis. Significant improvements in rhinitis-related symptoms were observed in patients undergoing cryoablation, irrespective of etiology (allergic or nonallergic rhinitis). Furthermore, cryoablation yielded improvements in disease-specific quality of life, as measured by the Rhinoconjunctivitis Quality of Life Questionnaire. Notably, a clinically significant reduction (≥30% decrease from baseline) in total nasal symptomatology was noted in 71% of cases following cryoablation. Regarding the incidence of adverse effects, nasal dryness, epistaxis, ocular symptoms, and palatal numbness occurred in &lt;5% of patients, while postoperative pain occurred in 10% and headache in 20% of patients who underwent treatment. In subtype analysis, the total nasal symptom score in nonallergic rhinitis showed a significantly increasing pattern over time (p=0.0017).Conclusion: Cryoablation of the posterior nasal nerve appears to yield a decrease in subjective nasal symptom scores and an improvement in disease-specific quality of life. Notably, these effects persisted for up to 12 months post-treatment, with marked improvements observed in both allergic and nonallergic rhinitis subtypes.

The Effect of Sleep Impairment, as Assessed by the CASIS Questionnaire, in Patients with Chronic Obstructive Pulmonary Disease on Disease Severity and Physical and Mental Health: A Cross-Sectional Study in Primary Care.

The aim of our study was to assess the prevalence of sleep impairment among primary care patients with COPD and explore its impact on disease severity and overall health status. This cross-sectional study included 251 participants > 40 years old from the prospective COCARE COPD study. Data on sociodemographic characteristics, medical history, disease-specific quality of life [COPD Assessment Test (CAT)], COPD severity [Global Initiative for Chronic Obstructive Lung Disease (GOLD) 2023 categorization based on CAT score and exacerbations], fatigue [Fatigue Severity Scale (FSS)], psychological parameters [Patient Health Questionnaire-9 (PHQ-9) and General Anxiety Disorder-7 (GAD-7)], and sleep complaints [COPD and Asthma Sleep Impact Scale (CASIS) and Epworth Sleepiness Scale (ESS)] were collected. Multiple logistic regression analysis was conducted to test for associations of sleep impairment with COPD and overall health status, adjusting for confounders. Sleep impairment, indicated by a CASIS score ≥ 30, increased the risk of worse COPD health status (CAT ≥ 10 OR: 9.7, 95% CI: 5-19, p < 0.001), COPD severity (GOLD B OR: 8.9, 95% CI: 4.5-17.6, p < 0.001 and GOLD E OR: 17.4, 95% CI: 5.1-59.4, p < 0.001), excessive daytime sleepiness (ESS > 10, OR: 3.2, 95% CI: 1.3-8.1, p = 0.012), depressive symptoms (PHQ-9 ≥ 10, OR: 6.4, 95% CI: 2.1-19.1, p = 0.001), anxiety symptoms (GAD-7 ≥ 10, OR: 3.9, 95% CI: 1.6-9.2, p = 0.002), and fatigue (FSS ≥ 36, OR: 5.3, 95% CI: 2.8-9.8, p < 0.001). In conclusion, our findings suggest that sleep impairment, based on the CASIS questionnaire, is associated with worse physical and mental health in patients with COPD. Therefore, through consistent evaluation of sleep and targeted management strategies, healthcare providers could improve the quality of life for these patients.

Antibiotic Prescription Rates For Respiratory Tract Infections Treated In The Outpatient Sector Based On Routine Data From A German Health Insurance Company

Acute uncomplicated upper respiratory tract infections (RTIs) are common reasons for antibiotic prescriptions in the outpatient sector, although>90% are of viral origins and mostly self-limiting. Germany has a low antibiotic prescription rate compared to other European countries, but there are regional differences. Disease-specific quality indicators (QI) developed by the European Surveillance of Antimicrobial Consumption Network (ESAC-Net) address the prescription rates (target <20%) and choice of antibiotic (target>80%) in a general practitioner population. The aim of this analysis was to operationalise the ESAC-Net-QI using secondary data from a health insurance company at the level of diseases and healthcare facilities, as well as to analyse areas for improvement. The underlying database comprises the panel physician billing, hospital and prescription data in accordance with German law (§§ 295, 300 and 301 SGB V) of the Barmer health insurance company for the year 2022. Categorical features are presented as frequency and percentage. Maximum specificity was aimed, hence potentially risky disease courses were excluded. The overall RTI prescription rate of antibiotics was 25% in 2022 before applying inclusion and exclusion criteria (1,197,568/4,720,786). After applying the algorithm, the prescription rate for all RTI cases dropped to 6% (80,786/1,365,646). When specific RTI indications are considered, 35% (13,465/38,913) of acute bronchitis and acute sinusitis cases (4,971/14,051) received an antibiotic prescription each. At the facility level, 38% of practices (1,396/3,705) treating acute bronchitis and 41% of practices (539/1,300) treating acute sinusitis achieved the target of<20% antibiotic prescriptions. Only 29% of all RTI cases with antibiotic prescriptions (23,733/80,786) received a first-choice antibiotic. Our analysis indicates that the ESAC-Net-QI for RTIs can be calculated at case and facility levels using routine health insurance data. For specific RTIs, there were indications of improvement potential in the frequency and selection of prescribed antibiotics.

Integrating psychological assessment in achalasia management: addressing mental health to enhance patient outcomes.

Achalasia is a chronic esophageal disorder with a generally favorable prognosis; however, approximately 20% of patients experience persistent or recurrent symptoms despite therapeutic interventions. These ongoing symptoms can significantly diminish both disease-specific and overall quality of life. Although the physical manifestations of achalasia, such as regurgitation, dysphagia, chest pain, and weight loss, are well-documented and assessed using the Eckardt score, the psychological burden of the disease remains underexplored. Individuals with achalasia are at an increased risk of mental health issues, including depression, anxiety, and somatization, exacerbated by the emotional strain and social limitations imposed by the disease. Despite this, psychological impacts are often overlooked in clinical settings, leading to inadequate mental health support for these patients. This article underscores the necessity for prompt psychological assessments during the diagnosis of achalasia to better address these mental health challenges and improve overall patient care.

How do illness perceptions impact device acceptance in patients with an implantable cardioverter defibrillator?

Abstract Background The implantable cardioverter defibrillator (ICD) is the first-line treatment for the prevention of sudden cardiac death in patients at high risk of a life-threatening arrhythmia. Illness perceptions encompass the cognitive and emotional representations each ICD patient has about their health condition, thus influencing coping strategies and health behaviors essential to adjusting to life with their device and underlying heart disease. We investigate how illness perceptions are prospectively linked to device acceptance in ICD patients. Purpose To examine how illness perceptions at ICD implantation are associated with patient device acceptance one-year post-implantation. Methods Secondary analysis of the ACQUIRE-ICD, national, multi-center, randomised controlled trial. Illness perceptions were measured with the Brief Illness Perceptions Questionnaire (B-IPQ) with 350 first-time ICD or cardiac resynchronization therapy defibrillator (CRT-D) recipients filling out the questionnaire at ICD implantation. B-IPQ was only assessed at baseline. Patient device acceptance, a disease-specific quality of life measure for ICD patients, was measured at both ICD implantation and at 12 months follow-up with the Florida Patient Acceptance Survey (FPAS). Of the 350 patients, 261 patients (75%) completed FPAS at 12 months follow-up. Results The participants’ mean age was 59.7 ± 11.4 years with the majority being male (83%). Total illness perceptions scores were categorised into low experienced threat (n = 182, 52%), medium experienced threat (n = 82, 23%), and high experienced threat (n = 86, 25%). In the multivariate analysis, high experienced threat at ICD implantation was associated with significantly lower device acceptance at 12 months follow-up compared to low (B = -5.80, 95% CI [- 10.61, – -1.00], p = .018) and moderate experienced illness threat (B = -7.35, 95% CI [- 12.32, – -2.38], p = .004) while adjusting for device acceptance at baseline, age, sex, NYHA-class, indication, ischemic heart disease, education, intervention group and device type. In an exploratory analysis investigating associations of all 8 B-IPQ illness perception dimensions (single item-scores) simultaneously regressed on 12-months total FPAS-scores with baseline FPAS-scores as covariate, B-IPQ item 4 measuring treatment control showed the strongest association (B = 0.94, 95% CI [0.13, – 1.76], p = .023) with higher perceived treatment control linked with higher device acceptance. Conclusion ICD patients with high experienced illness threat at ICD implantation had substantially lower device acceptance at one-year post-implantation compared to patients with low-to-moderate experienced illness threat. Perceptions of treatment control at ICD implantation appear to be a potential mediator of this relationship.

Disease-specific health-related quality of life trajectories up to 15 years after curative treatment for esophageal cancer-a prospective cohort study.

The presence of distinct long-term disease-specific HRQL trajectories after curative treatment for esophageal cancer and factors associated with such trajectories are unclear. This population-based and longitudinal cohort study included 425 esophageal cancer patients who underwent curative treatment, including esophagectomy, in Sweden in 2001-2005 and were followed up until 2020, that is, 15-year follow-up. The outcomes were 10 disease-specific HRQL symptoms, measured by the well-validated EORTC QLQ-OES18 questionnaire at 6 months (n = 402 patients), and 3 (n = 178), 5 (n = 141), 10 (n = 92), and 15 years (n = 52) after treatment. HRQL symptoms were examined for distinct trajectories by growth mixture models. Weighted logistic regression models provided odds ratios (OR) with 95% confidence intervals (95% CI) for nine factors in relation to HRQL trajectories: age, sex, education, proxy baseline HRQL, comorbidity, tumor histology, chemo(radio)therapy, pathological tumor stage, and postoperative complications. Distinct HRQL trajectories were identified for each of the 10 disease-specific symptoms. HRQL trajectories with more symptoms tended to persist or alleviate over time, while trajectories with fewer symptoms were more stable. Eating difficulty had three trajectories: persistently less, persistently moderate, and persistently more symptoms. The OR of having a persistently more eating difficulty trajectory was decreased for adenocarcinoma histology (OR = 0.44, 95% CI 0.21-0.95), and increased for pathological tumor stage III-IV (OR = 2.19, 95% CI 0.99-4.82) and 30-day postoperative complications (OR = 2.54, 95% CI 1.26-5.12). Distinct trajectories with long-term persistent or deteriorating disease-specific HRQL symptoms were identified after esophageal cancer treatment. Tumor histology, tumor stage, and postoperative complications may facilitate detection of high-risk patients for unwanted trajectories.

Assessment of Quality of Life after Functional Endoscopic Sinus Surgery for Chronic Rhinosinusitis

Abstract Background: Chronic rhinosinusitis is the most common otolaryngologic disease that has a great impact on patient’s quality of life. Patients refractory to medical therapy require functional endoscopic sinus surgery (FESS). Aim: To evaluate and compare the disease specific quality of life in patients of chronic rhinosinusitis pre operatively and after FESS using the Sino Nasal Outcome Test 22 (SNOT 22). Patients and Methods: This prospective longitudinal study was conducted on 30 patients with chronic rhinosinusitis. History, clinical, diagnostic sinonasal endoscopy and radiological findings were recorded. For assessing the quality of life, the SNOT-22 questionnaire was used preoperatively and after 1 week, 1 month and 3 months after undergoing FESS. Results: About 43.3% of the patients were males and 56.7% were females. Seventy percentage were between 18 and 30 years. Nasal obstruction was the most common presenting symptom (96.6%), followed by nasal discharge (80%). Diagnostic sinonasal endoscopy and non-contrast computed tomography scan of paranasal sinuses reflected the extent of the disease. The mean pre-operative SNOT-22 score was 40.4 ± 12.06 and a decrease in mean post-operatives scores was observed during their post-operative visits at 1 week (11.77 ± 3.39), 1 month (4.67 ± 2.77) and 3 months (2.47 ± 1.28) which were statistically significant. Conclusion: Chronic rhinosinusitis patient’s refractory to medical treatment showed statistically significant improvement in their quality of life after undergoing FESS.

Impact of Kono-S anastomosis on quality of life after ileocolic resection in Crohn's disease: an analysis from the SuPREMe-CD trial.

Crohn's disease has debilitating effects on patients' quality of life. Currently, there are limited data on the effect of anastomotic configuration on health-related quality of life after ileocaecal resection for Crohn's disease. This study aimed to assess the impact of Kono-S anastomosis on quality of life after ileocolic resection, compared to the conventional side-to-side anastomosis. Patients with primary or recurrent Crohn's disease participating in the ongoing SuPREMe-CD trial were interviewed about quality of life using the Inflammatory Bowel Disease Questionnaire (IBDQ). The primary endpoint was disease-specific quality of life, assessed with IBDQ. Secondary outcomes were quality of life related to bowel symptoms, systemic symptoms, social function and emotional function. Of the 94 patients included, 51 (54%) received the conventional side-to-side anastomosis and 43 (46%) the Kono-S anastomosis. Demographics were comparable between the two groups. The IBDQ was assessed at a mean follow-up of 54.0 ± 18.7 months from surgical intervention. The mean total IBDQ score was 155.1 ± 28.07 in the conventional group and 163.8 ± 25.23 in the Kono-S group (P = 0.11). When considering bowel symptoms and social function, mean scores were 50.7 and 23.5 in the conventional group, and 56.3 and 26.5 in the Kono-S group (P = 0.002 and P = 0.02, respectively). Kono-S anastomosis was independently associated with improved quality of life regarding bowel symptoms (P = 0.006) and social function (P = 0.03) after correcting for other confounding factors on linear regression analysis. Compared to conventional side-to-side anastomosis, patients with Kono-S anastomosis presented significantly better bowel symptoms and social function scores at 54 months after surgery.

Preoperative subjective assessment of disease-specific quality of life significantly influenced the likelihood of achieving the minimal clinically important difference after surgical stabilization for recurrent lateral patellar instability.

To evaluate which factors exert a predictive value for not reaching the minimal clinically important difference (MCID) in patients who underwent a tailored operative treatment for recurrent lateral patellar dislocation(RLPD). A total of 237 patients (male/female 71/166; 22.4 ± 6.8 years) were included. The Banff Patellofemoral Instability Instrument 2.0 (BPII 2.0) and subjective rating of knee function and pain (numeric analogue scale [NAS]; 0-10) were used to evaluate patients' outcomes from pre- to postoperatively. Gender, age at the time of surgery, body mass index (BMI), nicotine abuse, psychiatric diseases, cartilage statusand pathoanatomic risk factors were evaluated as potential predictors for achieving the MCID using univariate logistic regression analysis. The MCID for the BPII 2.0was calculated at 9.5 points. Although the BPII 2.0 and NAS for knee function and pain improved significantly in the total cohort from pre- to postoperatively (all p < 0.001), 29 patients did not reach the MCID at the final follow-up. The analysis yielded that only the preoperative NAS for function and BPII 2.0 score values were significant predictors for reaching the MCID postoperatively. The optimal threshold was calculated at 7 (NAS function) and 65.2 points (BPII 2.0). Age at the time of surgery should be considered for patients with a preoperative BPII 2.0 score >62.5. The probability of reaching BPII 2.0 MCID postoperatively depends only on the preoperative BPII 2.0 value and subjective rating of knee function, as well as age at the time of surgery for patients undergoing surgical treatment of RLPD. Here, presented results can assist clinicians in advising and presenting patients with potential outcomes following treatment for this often complex and multifactorial pathology. Level III.

Predictive validity of Lupus Patient-Reported Outcome for damage accrual in patients with systemic lupus erythematosus: the LUNA Registry.

The predictive validity of disease-specific quality of life (QOL) remains unknown in patients with systemic lupus erythematosus (SLE), although disease-specific measures are equally or more responsive to changes than generic QOL. We aimed to examine the predictive validity of the Lupus patient-reported outcome (PRO) for damage accrual. Patients with SLE and ≥2 measurements over time were included in Japanese nationwide multicentre registry (LUNA). The Lupus PRO questionnaire contains both health-related (HR) and non-HR-QOL measures. Damage accrual was evaluated using the Systemic Lupus International Collaborating Clinics/American College of Rheumatology Damage Index (SDI). We examined the association between the Lupus-PRO score at baseline and longitudinal SDI scores using mixed-effects models adjusted for prognostic factors. Among 1295 patients, those with higher HR-QOL of Lupus PRO at baseline demonstrated a significantly lower increase in SDI (-0.005/year, 95% confidence interval [CI]: -0.007 to - 0.004, p < 0.001). According to the categorisation of HR-QOL based on tertile, a similar dose-dependent effect of HR-QOL on longitudinal SDI was identified (second vs first tertile category: -0.101/year, 95% CI: -0.172 to - 0.030; third tertile category: -0.211/year, 95% CI: -0.281 to - 0.142). Non-HR-QOL was not significantly associated with the SDI scores. Among the HR-QOL domains, cognition, procreation, and physical health were significantly associated with the total SDI scores over time. HR-QOL was associated with corticosteroid-dependent and -independent SDI scores. A higher HR-QOL of Lupus PRO was associated with a lower increase in SDI scores. Our findings imply the importance of disease-specific HR-QOL measurements in assessing prognosis.

Spontaneous intracerebral hemorrhage – patients retrospectively consent to fibrinolytic surgery despite poor neurological outcome and reduced health-related quality of life

Spontaneous intracerebral hemorrhage (ICH) might lead to devastating consequences. Nonetheless, subjective interpretation of life circumstances might vary. Recent data from ischemic stroke patients show that there might be a paradox between clinically rated neurological outcome and self-reported satisfaction with quality of life. Our hypothesis was that minimally invasive surgically treated ICH patients would still give their consent to stereotactic fibrinolysis despite experiencing relatively poor neurological outcome. In order to better understand the patients’ perspective and to enhance insight beyond functional outcome, this is the first study assessing disease-specific health-related quality of life (hrQoL) in ICH after fibrinolytic therapy. We conducted a retrospective analysis of patients with spontaneous ICH treated minimally invasive by stereotactic fibrinolysis. Subsequently, using standardized telephone interviews, we evaluated functional outcome with the modified Rankin Scale (mRS), health-related Quality of Life with the Quality of life after Brain Injury Overall scale (QOLIBRI-OS), and assessed retrospectively if the patients would have given their consent to the treatment. To verify the primary hypothesis that fibrinolytic treated ICH patients would still retrospectively consent to fibrinolytic therapy despite a relatively poor neurological outcome, we conducted a chi-square test to compare good versus poor outcome (mRS) between consenters and non-consenters. To investigate the association between hrQoL (QOLIBRI-OS) and consent, we conducted a Mann-Whitney U-test. Moreover, we did a Spearman correlation to investigate the correlation between functional outcome (mRS) and hrQoL (QOLIBRI-OS). The analysis comprised 63 data sets (35 men, mean age: 66.9 ± 11.8 years, median Hemphill score: 3 [2-3]). Good neurological outcome (mRS 0–3) was achieved in 52% (33/63) of the patients. Patients would have given their consent to surgery retrospectively in 89.7% (52/58). These 52 consenting patients comprised all 33 patients (100%) who achieved good functional outcome and 19 of the 25 patients (76%) who achieved poor neurological outcome (mRS 4–6). The mean QOLIBRI-OS value was 49.55 ± 27.75. A significant association between hrQoL and retrospective consent was found (p = 0.004). This study supports fibrinolytic treatment of ICH even in cases when poor neurological outcome would have to be assumed since subjective perception of deficits could be in contrast with the objectively measured neurological outcome. HrQoL serves as a criterion for success of rtPa lysis therapy in ICH.

Validation of the carolinas comfort scale (CCS) in Brazil: a hernia-specific quality of life questionnaire.

Ventral hernia surgery (VHS) has the intent to promote a better quality of life (QoL). VHS results were evaluated by recurrence incidence in the past, however the concept of Patient-Reported Outcomes Measures has changed this scenario. SF-36 is a generic questionnaire with some limitations on the hernioplasty postoperative evaluation. Disease-specific surveys such Hernia-Related Quality of Life Survey (HerQLes) and Carolinas Comfort Scale (CCS) were developed to improve specificity. The aim of this study was to validate a Brazilian version of the CCS as a QoL questionnaire for patients undergoing VHS in Brazil. The study consists of a retrospective cohort that reviewed the medical records of patients who underwent ventral hernia surgery for incisional hernias in the Hospital de Clínicas de Porto Alegre between January 2019 to December 2020. Participants answered both the HerQles questionnaire and the CCS, then we compared the patients' scores between scales. In-personal evaluations or surveys applied by telemedicine were performed. Intraclass correlation coefficient was utilized to assess the consistency of the agreement between the HerQLes and CCS scales. A sample of 80 patients were evaluated. Most were male (70%), mean age 61.11 years and BMI 28.4. The most common comorbidity was systemic arterial hypertension, one third were smokers and 77.5% of cases were ASA 2. The average HerQLes score was 30.40 and the CCS was 15.46 (SD: 21.81), with an intraclass coefficient of 0.68. This study suggests that CCS is a good and robust tool for assessing ventral hernia. Tools to measure QoL are increasingly used in the literature, as QoL seems to be important data to assess surgical success, since it shows the perception of the patient about the results of their surgery. Further studies with larger sample sizes should be performed to confirm our findings.

Psychometric properties of disease-specific health-related quality of life instruments for food allergy: A COnsensus-based Standards for the selection of health Measurement INstruments-based systematic review.

Food allergies severely impact the health-related quality of life (HRQoL) of patients and their caregivers (family or informal caregivers). Currently there is no comprehensive review to provide an overview and critical assessment of the instruments in the field. Six databases were searched from inception until 10 August 2023, and a combination of subject terms and free words was used to search the literature. We used the COnsensus-based Standards for the selection of health Measurement INstruments methodology (COSMIN) to evaluate the measurement properties of the instruments. Forty-one studies reported on ten eligible instruments. Based on COSMIN guidelines, one instrument was recommended for Grade A, and the remaining nine instruments were recommended for Grade B. The Grade A instrument identified, the Food Allergy Quality of Life Questionnaire-Parent Form (FAQLQ-PF), can help researchers assess the effectiveness of treatment for patients with food allergy and to understand the psychosocial impact of the disease on patients.