Quality Of Life Outcomes Research Articles

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.

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

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 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.

Use of a next-generation multilayered foam dressing in hard-to-heal wounds: a prospective, multicentre study

Objective: Hard-to-heal wounds present a significant healthcare challenge due to their complex aetiology, impact on quality of life (QoL) and consequent economic burden. The aim of this study was to assess the usability, safety and performance of a next-generation, multilayered foam dressing, ConvaFoam (Convatec Ltd., UK), in the management of indicated hard-to-heal wounds. Method: In this prospective, multicentre, interventional, non-comparator, open-label study, wounds included venous leg ulcers, arterial leg ulcers, diabetic foot ulcers and pressure injuries. The primary endpoint was percentage change in wound area at four weeks. Additional endpoints included percentage change in wound area at 12 weeks, satisfactory clinical progress (defined as ≥40% reduction in study wound area at four weeks), complete wound closure, adverse events, pain, QoL and health professional usability outcomes. Results: A total of 90 patients (109 wounds) were included in the full analysis set. The median percentage reduction in wound area from baseline was 47.88% (p&lt;0.0001) at week 4 and 93.75% (p&lt;0.0001) at week 12. Satisfactory clinical progress at four weeks was reported for 61 (55.96%) wounds. Complete wound closure by week 12 was observed in 43 (39.45%) wounds (p&lt;0.0001). The median Wound Quality of Life-14 score improved from 55.36 at baseline, to 80.36 at week 12. Of the 2935 dressing applications, there were only two adverse events which were reported to be related to the study dressings. The majority of health professionals rated ease of application, exudate management, ease of removal and conformity as excellent. Conclusion: The ConvaFoam dressings were shown to be effective at reducing wound size and promoting healing in indicated hard-to-heal wounds, particularly diabetic foot and venous ulcers.

Biomechanical Behavior of Female Breast—A Review

Introduction: Women wear exterior breast support for most of the day. A female’s breast tissue and skin affect the comfort of the ADLs, exercise, health, and work environments. Understanding the breast tissue’s normal anatomy and mechanical and material properties is related to a woman’s daily health and quality of life outcomes. Considering the importance and impact of female breasts throughout one’s lifespan, additional research is needed to address the research gaps to provide solutions to improve daily lives and clinical interventions. Breast stability and behavior are dependent on its internal mechanical properties and applied external forces. Objective: To evaluate the current knowledge and research gaps on the adult female breast tissue’s anatomy, the factors that impact its growth and development, variations among racial populations, the internal and external mechanical properties of the tissue, and the factors employed to evaluate the pathology risk. Review sections: The review sections are as follows: 3. Anatomy of Breast, 4. Effects of Age and Stages of Breast Development, 5. Breast Skin, and 6. Breast Tissue Mechanics. Conclusions: Numerous research gaps have been identified within the field of female breasts.

Potassium titanyl phosphate laser resection of tongue T1/T2 squamous cell carcinoma - a cross-sectional study of quality of life and nutritional outcomes.

Increasing emphasis has been placed on measurement of quality of life (QOL) as a central criterion for assessment of success of any medical treatment. The aim of our study was to assess the nutritional and quality of life of patient-reported outcomes among patients who have undergone laser resection of tongue cancer. A cross-sectional study was undertaken of patients treated with KTP laser resection of T1/T2 tongue squamous cell carcinoma (SCC) between 2011-2019. University of Washington Quality of life 4 questionnaire (UW-QOL) and the abridged scored patient-generated subjective global assessment (AB PG-SGA) were used. Scores were correlated to analyse the QOL and nutritional status. 20 patients participated and were categorised into three groups based on AB PG-SGA score. The physical and social-emotional QOL scores were higher for patients who had a better nutritional status. There was a linear negative correlation between the AB PG-SGA score, physical and social-emotional domains of the QOL. No association was found between histopathological differentiation, neck dissection surgeries and the AB PG-SGA score. The use of the KTP laser to excise tongue T1 and T2 SCC yields acceptable results in terms of QOL and patient-reported nutritional outcomes. There is a significant trend identifying that as a patient's nutritional status improves quality of life is enhanced and vice versa. The QOL and the nutritional status of patients were not affected by the different histopathological grades of SCC or whether they had undergone a neck dissection or not.

P1086 Achieving early symptom resolution and endoscopic outcomes is associated with improved long-term outcomes in ulcerative colitis: A post-hoc analysis of INSPIRE and COMMAND studies

Abstract Background Early disease control, which includes symptom remission with mucosal healing (endoscopic and histological remission) is emerging as a potential therapeutic goal in ulcerative colitis, which may be achieved by effective therapeutic intervention.1 This post-hoc analysis examined the impact of achieving individual symptom resolution, endoscopic improvement (EI) or endoscopic remission (ER) post 12 Weeks (Wk) of risankizumab (RZB; a specific inhibitor of interleukin-23) induction treatment on achieving long-term clinical, endoscopic, and quality of life (QoL) outcomes at maintenance Wk 52. Methods This analysis included patients (pts) who achieved a clinical response after 12 wks of intravenous RZB in Phase 2b and Phase 3 INSPIRE induction studies and received subcutaneous RZB 180 or 360 mg in COMMAND maintenance study. The frequency and proportions of pts achieving maintenance Wk 52 outcomes (clinical remission [CR], EI, ER, or meaningful change in QoL) between pts who achieved the absence of symptoms (abdominal pain, bowel urgency [BU], tenesmus, fecal incontinence [FI], sleep interruption [SI], nocturnal bowel movements [NBM]), achieved fatigue normalization, or achieved EI/ER at end of induction vs those who did not was determined. Adjusted predictive analyses assessed the relationship between achieving outcomes at induction Wk 12 and maintenance Wk 52, reported as logistic regression-derived odds ratios (ORs) and 95% confidence intervals. Results In total, 179 and 186 pts received RZB 180 and 360 mg during maintenance, respectively. After adjusting for pt characteristics, pts who achieved absence of symptoms at Wk 12 had significantly greater odds of achieving CR, EI, or ER at Wk 52; specifically, absence of BU, FI, and NBM were significantly associated with CR (OR 1.793, 1.722, 1.645), absence of BU and NBM were significantly associated with EI (OR 1.557, 1.563), and absence of FI, NBM, and SI were significantly associated with ER (OR 2.337, 2.318, 2.355). Similarly, pts who achieved endoscopic outcomes of EI/ER at induction Wk 12 had a significantly greater odds of achieving CR (OR 2.011/3.332) and maintaining EI (OR 2.278/5.974) and ER (OR 3.222/7.426) at Wk 52 (Figure). Pts achieving absence of BU, tenesmus, NBM, and ER at Wk 12 had significantly greater odds of achieving meaningful within-person change in QoL outcomes such as work time missed, impairment while working, and overall work and activity impairment at Wk 52 (Table). Conclusion Achieving early disease control with RZB treatment through symptom and specifically endoscopic outcome improvements at Wk 12 was generally associated with greater odds of achieving improved long-term clinical, endoscopic, and QoL outcomes at Wk 52.

Nutritional Status and Information Provided to Polish Cancer Patients Assessed Using the EORTC QLQ-INFO25 Questionnaire

Background/Objectives: Malnutrition in cancer patients may significantly affect various aspects of the quality of life, outcomes, and prognosis, while satisfaction with the information provided may also influence these aspects. This study aims to assess the nutritional status of Polish cancer patients and its association with the level of information received, their potential need for more information, and the resultant quality of life. Methods: A cross-sectional study was conducted in 104 cancer patients. Validated European Organization for Research and Treatment of Cancer questionnaires EORTC QLQ-C30 and EORTC QLQ-INFO25 were used, and nutritional assessment was conducted using Subjective Global Assessment (SGA). Results: Male patients reported receiving more information than females about the disease, treatment, and care options, as well as greater satisfaction, and a higher overall score. Patients receiving enteral nutrition were more satisfied compared to those not receiving it, even if the scores for the information obtained within the specific areas did not differ, but they still wished to receive more information. Older patients reported higher scores than younger patients, indicating a higher level of information received regarding medical tests and higher satisfaction. The EORTC QLQ-INFO25 global score showed strong or moderate positive correlations with the majority of modules, and the level of information provided significantly influenced satisfaction. Conclusions: Female patients, those not receiving enteral nutrition, and young patients were less satisfied with the information received, which may negatively influence their quality of life. Effective communication with patients highlights the need for personalized informational support to enhance quality of life.

P0492 Development and Assessment of a Novel Ulcerative Colitis–Specific Quality of Life Questionnaire: A Prospective, Multi-Institutional Study

Abstract Background Interest in the quality of life (QoL) of patients with inflammatory bowel disease (IBD) has recently increased. Althoughmeasurement tools have been devised for IBD in general, there is no specific tool for measuring the QoL of patients with ulcerativecolitis (UC). Therefore, we developed a QoL questionnaire specifically for patients with UC. Methods The Korean Ulcerative Colitis-Specific Questionnaire (K-UCSQ) was developed through item generation,raw-scale construction, focus group meetings, and multi-center field tests. Two hundred patients with UC were recruited for a fieldtest of the K-UCSQ, and subsequent responses to the Inflammatory Bowel Disease Questionnaire (IBDQ) were also obtained. Afterperforming factor analyses to ensure construct validity, the K-UCSQ was finalized as a four-domain, 28-item questionnaire. Subsequentanalyses evaluated the reliability of the K-UCSQ in terms of Cronbach’s alpha, concurrent validity in comparison with thepre-established IBDQ, and predictive validity of the area under the ROC curve (AUC) for clinically relevant QoL outcomes. Results A Cronbach’s alpha of 0.94 showed excellent reliability. Furthermore, correlation analyses demonstrated the concurrent validityof the K-UCSQ in comparison with the IBDQ. The K-UCSQ also showed high validity in predicting the perceived overall health(AUC of 0.812 vs. 0.797 using the IBDQ) and past 2-week QoL (AUC of 0.864 vs. 0.859 using the IBDQ). Conclusion The newly developed K-UCSQ is concise, bathroom problem-emphasizing, and UC-specific, suggesting that it couldbe a valid and reliable UC-specific instrument for QoL measurement.

Wellbeing and quality of life among parents of individuals with Fontan physiology.

To examine global and health-related quality of life (QOL) among parents of individuals with Fontan physiology and determine associations with sociodemographic, parent and child-related health, psychological, and relational factors. Parents participating in the Australian and New Zealand Fontan Registry (ANZFR) QOL Study (N = 151, Parent Mean age = 47.9 ± 10.2years, age range: 31.6-79.6years, 66% women; child Mean age = 16.3 ± 8.8, age range: 6.9-48.7years, 40% female) completed a series of validated measures. Health-related QOL was assessed using the PedsQL 4.0 Core Generic Scales for adults and global QOL was assessed using a visual analogue scale (0-10). Most parents (81%) reported good global QOL (≥ 6), consistent with broader population trends. Nearly one-third of parents (28%) reported at-risk health-related QOL (based on total PedsQL scores) with physical functioning most affected (44%). Psychological factors, including psychological stress and sense of coherence, emerged as the strongest correlates of global and health-related QOL, explaining an additional 16 to 30% of the variance (using marginal R2). Final models explained 35 and 57% and of the variance in global and health-related QOL, respectively (marginal R2). Relational factors, including perceived social support and family functioning contributed minimally when analyzed alongside psychological variables. While parents of individuals with Fontan physiology report good global QOL, challenges in health-related QOL exist. We identified key psychological, sociodemographic, and health-related factors associated with parental QOL outcomes. These data may aid early identification of physical and psychosocial difficulties and guide targeted health resource allocation for this population.

Psychological symptoms, quality of life and dyadic relations in family members of intensive care survivors: a multicentre, prospective longitudinal cohort study

BackgroundThere is scarce literature evaluating long term psychological or Quality of Life (QoL) outcomes in family members of ICU survivors, who have not experienced invasive ventilation. The objective was to compare long-term psychological symptoms and QoL outcomes in family members of intubated versus non-intubated ICU survivors and to evaluate dyadic relationships between paired family members and survivors.MethodsProspective, multicentre cohort study among four medical-surgical ICUs in Australia. Adult family members of ICU survivors and family-survivor dyads had follow-up assessments (3 and 12 months after ICU discharge), using Impact of Event Scale-Revised; Depression, Anxiety Stress Scales-21; EQ-5D-5L. Dyadic relationships examined associations of psychological symptoms or QoL impairments.ResultsOf 144 family members (75% female, 54% partners/spouses) recruited, 59% cared for previously intubated survivors. Overall, 83% (110/132) of eligible family members completed ≥ 1 follow-up. In family members of intubated vs non-intubated survivors, clinically significant psychological symptoms (PTSD/depression/anxiety) were reported by 48% vs 33% at 3-months (p = 0.15); and 39% vs 25% at 12-months (p = 0.23). Family self-rated their QoL with a mean score of 83 (SD 13) on a visual analogue scale (range 0–100), and > 30% reported problems in pain/discomfort or anxiety/depression domains at 12-months. Family members were more likely to have persistent psychological symptoms of PTSD [OR 4.9, 95% CI (1.47–16.1), p = 0.01] or depression [OR 14.6, 95% CI (2.9–72.6), p = 0.001]; or QoL domain problems with pain/discomfort [OR 6.5, 95% CI (1.14–36.8), p = 0.03] or anxiety/depression [OR 3.5, 95% CI (1.02–12.1), p = 0.04], when the paired survivor also reported the same symptoms.ConclusionsAlmost one-third of the family members of ICU survivors reported persistent psychological symptoms and QoL problems at 12-months. There was a noticeable dyad effect with family members more likely to have persistent symptoms of PTSD, depression, and problems in QoL domains when the paired ICU survivors experienced similar symptoms. The family members of non-intubated ICU survivors had an equal propensity to develop long-term psychological distress and should be included in long-term outcome studies. Future recovery intervention trials should be aimed at ICU family-survivor dyads.Trial registration ACTRN12615000880549