Long-term Health-related Quality Research Articles

Temporal Relationships Between General Self-Efficacy, Social Support and Health-Related Quality of Life Among Adult Survivors of Childhood Acute Lymphoblastic Leukemia: A 9-Year Follow-Up Study.

Acute lymphoblastic leukemia (ALL) is the most prevalent childhood malignancy. To improve long-term health-related quality of life (HRQOL) in adult survivors of childhood ALL, more longitudinal studies are needed to assess outcomes and risk factors throughout treatment and survivorship. The aim of this study was to examine the long-term changes in HRQOL, self-efficacy, and social support among adult survivors of childhood ALL and to explore the temporal relationship between HRQOL, self-efficacy, and social support. The study includes 148 adult childhood ALL survivors who responded to a questionnaire assessing HRQOL (SF36), self-efficacy (General Self-Efficacy Scale, GSE), and quantitative and qualitative social support (AVSI and AVAT in SS13) in 2012 and 2021. Changes in the HRQOL, GSE, and social support were calculated using paired t-tests. Bayesian path models were specified, and separate models were estimated for each relationship between GSE and AVSI, and AVAT and HRQOL. Cross-sectional associations, autoregressive effects within constructs over time, and cross-lagged effects between two variables over time were specified within each model. The mean of six of the eight HRQOL dimensions, as well as quantitative and qualitative social support, deteriorated during the 9-year follow-up. Self-efficacy was unchanged. Temporal positive relationships were found between baseline GSE and the HRQOL dimension of social functioning, as well as between social support and the HRQOL dimensions of physical functioning, vitality, and mental health at follow-up. The findings highlight the importance of self-efficacy and social support as potential buffering factors for HRQOL in adult survivors of childhood ALL over time.

Parent-Reported Burn-Specific Health-Related Quality of Life in Children 5–7 Years After Burns: A Multicenter Cross-Sectional Study

Surviving a burn can dramatically alter a child’s life, yet few studies examined long-term health-related quality of life (HRQL). This study assessed HRQL 5–7 years post-burn in children with mild/intermediate and severe burns and identified associated factors. Parents of children (5− < 18 years) who were hospitalized or had burn surgery between 08/2011 and 09/2012 completed the Burn Outcomes Questionnaire (BOQ). Outcomes were compared between two subgroups: children with mild/intermediate burns (<10% total body surface area (TBSA) burned) versus severe burns ((1) aged <10 years old at the time of injury with >10% (TBSA) burned; (2) aged ≥10 years with >20% TBSA burned; or (3) >5% full-thickness burns). A total of 102 children were included (mean age at survey: 8.4 (3.0) years; mean former TBSA: 7.1%). At a mean of 5.7 years post-burn, many parents rated their child’s health as excellent (46.1%) or very good (35.3%), with few reporting issues with ‘pain’ (2.3%), ‘physical function and sports’ (1.6%), and ‘upper extremity function’ (0.9%). Parents of children with severe burns indicated significantly more problems with ‘appearance’ (89.2% versus 71.5%; p = 0.014) and ‘parental concern’ (94.1% versus 84.8%; p = 0.021). Upper limb burns, facial burns, burn size, length of hospital stay, full-thickness burns, and the number of surgeries predicted poorer outcomes. In general, these findings indicate positive long-term HRQL, though especially children with full-thickness burns and/or surgical interventions face a higher risk of reduced HRQL. The results can be used to inform children and their families about the long-term implications. Furthermore, healthcare professionals can use these insights to identify children at higher risk of poorer long-term HRQL.

Curve progression in non-surgically treated patients with idiopathic scoliosis: a cohort study with 40-year follow-up.

Treatment of idiopathic scoliosis in childhood aims to prevent curve progression. It is generally accepted that curves > 50° have the highest risk of progression, but less well described is what happens with mild to moderate curves. The aim of this study was to assess long-term curve progression and health-related quality of life (HRQoL) and compare thoracic and thoracolumbar/lumbar (TL/L) curves. We identified 177 patients diagnosed with a pediatric spinal deformity and treated at our institution from 1972 through 1983. 91 of 129 eligible patients with idiopathic scoliosis completed follow-up (71%). Patient files from treatment/observation in childhood were reviewed including detailed descriptions of radiographs. At follow-up we assessed long standing full-spine radiographs and HRQoL with the Scoliosis Research Society 22 revised questionnaire. Mean follow-up was 41 years (standard deviation [SD] 2.5 years). 21 patients underwent surgery in adolescence or early adulthood leaving 70 patients for analysis of curve progression, of whom 61 had complete radiographs. For patients with a main curve < 25° at the end of treatment in adolescence (n = 19) mean curve progression was 7° (SD 9); for 25-40° curves (n = 26) 16° (SD 13); for 40-50° curves (n =10) 22° (SD 8); and for curves > 50° (n = 6) 17° (SD 6). There was a linear association between main curve size at follow-up and SRS-22r subtotal score (P = 0.003). We found substantial curve progression for patients with main curves > 25° at end of treatment, but with a considerable variation between patients. Curve progression was not associated with curve size at the end of treatment and did not differ significantly between thoracic and TL/L curves. Larger main curve size at follow-up was associated with lower HRQoL.

Association of Pre- and Postinjury Mental Health With Long-term Clinical and Financial Outcomes.

As increased attention is placed on optimizing long-term outcomes of trauma patients by addressing mental health, little is known regarding the interplay of pre- and postinjury mental health on long-term financial and functional outcomes. Patients from 19 Level 1 and 2 trauma centers took part in serial surveys 1 to 24 months postdischarge. Preinjury mental health diagnoses were identified using trauma registry data and postinjury mental health symptoms from survey data. Outcomes included (1) health-related quality of life from the EuroQol-5D-5L and (2) elements of financial toxicity (e.g. medical debt, job/income loss, nonmedical bills, unaffordable care). Multivariable models were created, adjusting for patient, injury, and treatment factors, to evaluate the association of preinjury mental health diagnoses and postinjury mental health symptoms on health-related quality of life and financial toxicity. A total of 1,017 patients completed 1,297 surveys from July 2021 to December 2023, at a median of 6 months postinjury. Forty-six percent were female, the median age was 67.5 years, and 89% had blunt injuries. Thirty-two percent of patients had a preinjury mental health diagnosis, and 49% had self-reported mental health symptoms postdischarge. Patients with preinjury mental health diagnoses had higher odds of postinjury mental health symptoms (adjusted odds ratio, 3.6 [2.6-4.9]; p < 0.001); however, 55% of those with postinjury symptoms had no preinjury diagnosis. Postinjury symptoms alone were associated with worse health-related quality of life or financial toxicity. Notably, patients with new postinjury mental health symptoms (no preinjury mental health diagnosis) had the highest rate of foregone postinjury care because of costs (26% vs. 14%, p < 0.01). More than one-in-two patients had peri-injury mental health conditions, and patients with postinjury mental health symptoms experienced worse financial and functional outcomes. Addressing postinjury mental health may potentially improve long-term health-related quality of life of trauma survivors; however, efforts are needed to ensure that patients can afford the care needed for optimal health. Prognostic and Epidemiological; Level IV.

Prolonged mechanical ventilation in critically ill patients: six-month mortality, care pathways, and quality of life.

There is limited knowledge about long-term mortality, care pathways and health-related quality of life (HrQoL) among intensive care unit (ICU) patients receiving prolonged mechanical ventilation (PMV). What are the long-term mortality, care pathways, and HrQoL of patients receiving invasive PMV, stratified by weaning success? and methods: We conducted a secondary analysis of patients from the cluster-randomised controlled Enhanced Recovery after Intensive Care trial who were treated in two ICU clusters and received invasive PMV (≥21 days via endotracheal tube/tracheostomy or ≥four days via tracheostomy). Data on weaning success, mortality, care place transitions, readmissions, and HrQoL were collected for six months after ICU discharge. Of 90 patients receiving PMV in the ICU, 46% (41/90 patients) died (21 patients in the ICU and 20 patients within six months after ICU discharge). Of 69 patients discharged alive, 25% (17/69 patients) could not be weaned, whereas 75% (52/69 patients) were successfully weaned within six months. Patients experienced a median of 3 [Q1, Q3: 2, 5] care place transitions within six months, with more care place transitions among successfully weaned patients (median 4 [Q1, Q3: 2, 5] vs 2 [1, 3], p=0.004). The readmission rate among all patients was 46% after six months. Half of the successfully weaned patients transitioned home, whereas unsuccessfully weaned patients mostly transitioned from weaning centres to nursing homes or died. Unsuccessfully weaned patients had fewer quality-adjusted life days within six months than successfully weaned patients (median 0 [Q1, Q3: 0, 32.6] vs 73.1 [23.2, 135], p=0.002). Three quarters of patients receiving PMV who were discharged alive were weaned, but their HrQoL was reduced. The decision to proceed with PMV should weigh in patient preferences for living with HrQoL limitations and patients' likelihood of weaning. ClinicalTrials.gov (identifier: NCT03671447) on September 12, 2018.

Long-Term Health-Related Quality of Life in Kawasaki Disease-Related Coronary Artery Aneurysm: A Large Single-Center Assessment in Nanjing, China.

The impact of coronary artery aneurysms (CAAs) caused by Kawasaki disease (KD) on long-term health-related quality of life (HRQOL) in children has not been well documented. This study investigated long-term HRQOL in a large sample of children diagnosed with KD-related CAAs. A case-control, retrospective study included 66 patients with KD-related CAAs. A total of 98 hospitalized patients were matched as controls based on age and sex: 49 patients were allocated to a group with pneumonia and 49 patients were allocated to a group with arterio-arterial fistula. Both child-reported and parent-proxy-reported Pediatric Quality of Life Inventory surveys were collected. The median (IQR) follow-up period was 5.64 (3.81-7.47) years (range, 1.03-10.67 years). The mean (SD) age at diagnosis was 3.73 (1.93) years. At baseline, children and parents as their proxies reported similar HRQOL scores for KD-related CAAs and arterio-arterial fistula that were considerably lower than for pneumonia, respectively. At long-term follow-up, children in the small and medium-sized aneurysms group reported a mean (SD) score of 81.61 (19.50), which was comparable to the arterio-arterial fistula group (83.32 [18.24]), 9.51 points lower than that of the pneumonia group (P = .014), and 9.70 points higher than that of the giant aneurysms group (P = .012). Parents also reported a comparable mean (SD) score of 81.03 (12.57) vs 83.30 (15.17) in the small and medium-sized aneurysms group and arterio-arterial fistula group, both of which had statistically significantly lower scores than the pneumonia group (P = .010) and higher scores than the giant aneurysms group (P = .009). Despite improvement in HRQOL scores, children with documented KD-related CAAs without complete recovery often encountered issues that disrupted their well-being during long-term follow-up. Routine outpatient HRQOL screening could be instituted to help eliminate the risk of long-term disability following initial clinical improvement.

Long-term health-related quality of life issues associated with the COVID-19 pandemic

Long-term health-related quality of life issues associated with the COVID-19 pandemic

Long-term disease-free survival and health-related quality of life results of high-dose-rate brachytherapy as monotherapy for low and intermediate-risk prostate cancer treated in a community cancer center

PURPOSETo determine the long-term disease-free survival, long-term toxicity, and effect on health-related quality of life of a two-fraction regimen of high-dose-rate (HDR) prostate brachytherapy. METHODS AND MATERIALSPatients with low- or intermediate-risk prostate cancer were treated with CT-planned HDR brachytherapy as monotherapy in two implants of 13.5 Gy in one community cancer center. Prostate-specific antigen (PSA), International Prostate Symptom Score (IPSS) and Expanded Prostate Index Composite (EPIC) questionnaires were evaluated at each follow-up visit. Biochemical recurrence (Phoenix definition) was evaluated to determine disease-free survival at 5 and 7 years. Proportion of patients in each IPSS category (mild = 0–7, moderate = 8–18, severe = 19+) was evaluated at each follow-up interval. RESULTSThirty patients were accrued to the study between 2014 and 2016. Median prostate-specific antigen was 8,7 (range 4.1–17.5). T stages were T1c = 65%, T2a = 21%, and T2b = 14%. Twenty-seven percent of patients had a Gleason score of 6 and 73% had a Gleason score of 7. 13% were in low risk category and 87% in intermediate risk category. Median follow-up was 84 months. There were no deaths at 84 months after brachytherapy. Disease-free survival was 90% at 5 years and 86% at 7 years. Two patients experienced late Grade 3 GU toxicity (6.6%). CONCLUSIONSThis study serves as proof of concept that HDR monotherapy can be performed successfully with excellent long-term outcomes in a community cancer center with adequate training and experience. The long-term disease-free survival rate and the health-related quality of life seem acceptable as compared to other treatment modalities. Further study is ongoing with regard to the optimal dosing regimen for HDR monotherapy.

Unmet Needs in Spondyloarthritis: Pathogenesis, Clinical Trial Design, and Nonpharmacologic Therapy.

A program focused on pathogenesis, clinical trial design, and nonpharmacologic mind-body therapy for spondyloarthritis (SpA) was presented at the Spondylitis Association of America Unmet Needs Conference IV. SpA pathogenesis is incompletely understood but involves a complex set of drivers, including genetics, biomechanical stress, and microbial factors. Affected tissues may include axial and peripheral joints, entheses, skin, uvea, and intestines. The specific role of key cytokines like interleukin (IL)-23, IL-17, and tumor necrosis factor in the phases of this inflammatory process remains unclear. New insights into pathogenesis will continue to generate targets for novel therapeutics. How to optimally evaluate those therapeutics in clinical trials, and for the various manifestations of SpA, remains less clear. Future trials need better generalizability, robust subgroup analyses to assess differential responses for distinct disease manifestations, a focus on comparative efficacy, and outcomes relevant to the clinician and the patient. Additionally, study designs need to leverage available technology to facilitate subject participation in trials. In view of the interplay between biologic, physical, and psychological aspects of disease, there is increasing attention to nonpharmacologic agents, with the aim of maximizing long-term health-related quality of life through the control of symptoms and inflammation. Recent studies provide encouraging evidence that mind-body interventions such as tai chi, qigong, yoga, and meditation have benefits for patients with SpA, particularly those with pain. The advances in our understanding of pathogenesis, novel therapeutics, and nonpharmacologic interventions have revolutionized the management of SpA, but numerous questions around optimal management remain.

Health-related quality of life benefits of arsenic trioxide in patients with non-high-risk acute promyelocytic leukemia are sustained over time: long-term results of the GIMEMA APL0406 trial.

Very limited evidence is available on the long-term health-related quality of life (HRQoL) of patients with acute promyelocytic leukemia (APL) treated with arsenic trioxide (ATO). We performed an extended follow-up of the APL0406 randomized controlled trial to investigate HRQoL of patients treated with either ATO or chemotherapy. A secondary objective was to describe the prevalence of clinically important problems and symptoms of these patients by type of treatment. Overall, 117 patients were included in this analysis after a median follow-up of 10 years (IQR 8-11) since diagnosis. Of these, 60 (51.3%) were treated with ATO, and 57 (48.7%) with chemotherapy. A statistically significant and clinically relevant difference, favoring patients treated with ATO, was found in 2 of the 3 main prespecified EORTC QLQ-C30 scales, that is, cognitive functioning (∆ = 7.7; 95% CI 0.5 to 14.9; p = 0.036) and fatigue (∆ = -9.4; 95% CI -17.9 to -0.8; p = 0.031). The prevalence of clinically important problems and symptoms tended to be slightly higher in patients treated with chemotherapy. These findings suggest that previously observed HRQoL advantages of ATO therapy of patients included in the APL0406 trial are sustained over the long-term period. This study was registered at ClinicalTrials.gov (NCT03096496).

Radical Cystectomy with Ileal Orthotopic Neobladder after 70 Years Leads to Worse Health-Related Quality of Life

Background: Radical cystectomy (RC) with the formation of an ileal orthotopic neobladder (ONB) may adversely affect long-term health-related quality of life (HRQOL). An advanced age at the time of ONB construction could further exacerbate the decline in HRQOL. This study aims to establish an evidence-based age threshold at the time of RC with ONB, beyond which a significant deterioration in HRQOL is observed. Methods: We retrospectively analyzed all bladder cancer patients in our department between 2013 and 2022 that fulfilled the EORTC-QLQ-C30 questionnaire preoperatively, as well as at 3 and 12 months after RC with ONB. Patients receiving neoadjuvant or adjuvant chemotherapy or benign/palliative RC were excluded. Results: Overall, 120 patients (81% males) with a mean age of 66 ± 9.6 years underwent RC with ONB and fulfilled the selection criteria. The Global Health Status (GHS) of the EORTC-QLQ-C30 was 64 ± 23 preoperatively, was 64 ± 20 three months postoperatively, and was 68 ± 23 twelve months postoperatively. Overall, 80 (67%) patients presented an increase in GHS at twelve months compared to their preoperative values. The perioperative complications did not differ between patients with decreased and increased GHS. Patients with increased GHS had values of 58 ± 24 preoperatively, 67 ± 19 at 3 months, and 77 ± 16 at 12 months. Patients with decreased GHS had values of 76 ± 16 preoperatively, 57 ± 21 at 3 months, and 50 ± 25 at 12 months. Using ROC analyses with Youden’s index, we defined a threshold of 70 years, after which RC with ONB may lead to worse GHS twelve months postoperatively. Worse continence outcomes were the only perioperative and long-term parameters that predicted worse HRQOL in elderly patients. Conclusions: Based on HRQOL, we suggest that RC with an ileal conduit as a urinary diversion should be recommended in patients older than 70 years.

Postprostatectomy Radiotherapy Timing and Long-Term Health-Related Quality of Life

The association between radiotherapy (RT) timing after radical prostatectomy and long-term patient-reported health-related quality of life (HRQOL) in men with prostate cancer is unknown. To measure long-term HRQOL in men with prostate cancer up to 15 years after prostatectomy with or without RT and examine whether early vs late postprostatectomy RT is associated with differences in sexual, urinary, and bowel HRQOL. A prospective, multicenter, longitudinal cohort analysis using HRQOL data from the PROST-QA (2003-2006) and RP2 consortium (2010-2013) studies was conducted. Men with localized prostate cancer undergoing radical prostatectomy were included. Data were analyzed between May 8, 2023, and March 1, 2024. The study was conducted in 12 high-volume academic medical centers in the US. Men were stratified based on receipt and timing of postprostatectomy RT: prostatectomy only, early RT (<12 months), and late RT (≥12 months). Longitudinal sexual, incontinence, urinary irritation, bowel, and hormonal/vitality HRQOL were measured via the Expanded Prostate Cancer Index Composite at baseline; months 2, 6, and 12; and annually thereafter. Treatment groups were compared using multivariable linear mixed-effects models of change in longitudinal domain scores. Pad use for incontinence was measured longitudinally among men receiving postprostatectomy RT. A total of 1203 men were included in the study: prostatectomy only (n = 1082), early RT (n = 57), and late RT (n = 64). Median age for the entire cohort was 60.5 (range, 38.8-79.7) years, and 1075 men (92.0%) were White. Median follow-up was 85.6 (IQR, 35.8-117.2) months. Compared with men receiving prostatectomy alone, those receiving postprostatectomy RT had significantly greater decreases in sexual, incontinence, and urinary irritation HRQOL. However, timing of postprostatectomy RT, specifically early vs late, was not associated with a long-term decrease in any HRQOL domain. There was evidence of improved recovery of sexual, continence, and urinary irritation scores among men receiving early RT compared with those receiving late RT after prostatectomy. Before the start of postprostatectomy RT, 39.3% of men in the early RT cohort and 73.4% of men in the late RT cohort were pad-free. By the sixth visit post-RT, 67.4% in the early RT cohort and 47.6% in the late RT cohort were pad-free. In this multicenter, prospective analysis, postprostatectomy RT appeared to be negatively associated with long-term HRQOL across all domains. However, receipt of early vs late postprostatectomy RT may result in similar long-term HRQOL outcomes.

Long-term health-related quality of life and rhythm outcomes of catheter ablation versus antiarrhythmic drugs in patients with atrial fibrillation

BackgroundData on long-term effects of catheter ablation vs antiarrhythmic drugs (AADs) on health-related quality of life (HRQoL) and atrial fibrillation (AF) burden are limited. ObjectiveThe study aimed to assess long-term HRQoL and rhythm data in patients with symptomatic AF. MethodsThe 75 patients who underwent ablation and 74 receiving AADs in the Catheter Ablation compared with Pharmacological Therapy for Atrial Fibrillation (CAPTAF) trial were followed for 48 months. The General Health subscale of the 36-Item Short-Form Health Survey, time to first AF episode ≥1 hour, and AF burden, recorded by implantable cardiac monitors, were compared. ResultsOne hundred forty-seven patients completed follow-up, with 7 crossovers in the ablation group and 34 crossovers in the AAD group. General Health improved by ablation from a median of 62 points at baseline to 79.2 points at follow-up (P < .001) and by AADfrom a median of 67 to 77 points (P < .001), without treatment differences (P = .77). Time to first AF episode ≥1 hour was longer (median 257 days in the ablation group vs 180 days in the AAD group; P = .025). The cumulative AF burden during follow-up was lower in the ablation group (median 0.3%; interquartile range [IQR] 0%–1.4%) than in the AAD group (1.6%; IQR 0.1%–11.0%); P = .01. The cumulative reduction in AF burden compared with baseline was greater in the ablation group (median −89.5%; IQR −98.4% to −51.3%) than in the AAD group (−52.7%; IQR −92.6% to 263.6%); P < .001. ConclusionHRQoL improvement in long-term did not differ between ablation and AAD groups despite a larger reduction in AF burden after ablation. The results should be interpreted in the light of a high crossover rate in the AAD group.

Long-term health-related quality of life of patients after prolonged weaning depending on weaning status

Long-term outcome in patients with prolonged weaning is known to be impaired, particularly against the background of their weaning status; however, data on their health-related quality of life (HRQL) are sparse. HRQL was measured in patients with prolonged weaning using the Severe Respiratory Insufficiency Questionnaire (SRI). Overall, 39 out of 83 patients with prolonged weaning filled in the SRI questionnaire. The median interval between discharge from hospital and HRQL assessment was 3.5 years (IQR 2.4-4.5 years). In the total group, the median SRI summary score was 56.4 (IQR 38.8-73.5). Patients with unsuccessful weaning and subsequent invasive home mechanical ventilation (N=15) had worse HRQL as estimated from the SRI summary score when compared to those with successful weaning both without (n=13) and with subsequent long-term non-invasive ventilation (NIV) (n=11); Kruskal-Wallis-Test: H (2, n=39) = 7,875446; P=0.0195. Statistically significant differences indicating worse HRQL in patients with invasive home mechanical ventilation were particularly evident in the following SRI subscales: Social relationships (P=0.0325), Anxiety (P=0.0096), and Psychological well-being (P=0.0079). HRQL is substantially impaired in patients with unsuccessful prolonged weaning and subsequent invasive home mechanical ventilation compared to those with successful prolonged weaning. Further studies incorporating higher case numbers are needed to assess other conditions potentially affecting HRQL in patients with prolonged weaning.

Quality of Life in Lymphedema Patients Treated by Microsurgical Lymphatic Vessel Transplantation-A Long-Term Follow-Up.

Lymphedema is a chronic condition characterized by the accumulation of lymph fluid in the upper or lower extremities, leading to swelling, discomfort, and disability in everyday life. While various treatment modalities exist, microsurgical lymphatic vessel transplantation (LVT) has emerged as a promising option. However, there is little to no long-term follow-up data regarding patients' improvement in quality of life for this surgical technique. The present study conducts an investigation of the long-term health-related quality of life (HRQoL) over more than 20 years in patients with lymphedema treated with LVT and accomplishes this by utilizing an adapted SF-12 survey. A retrospective analysis was conducted on patients who underwent LVT between 1 January 1983 and 1 October 2010 at LMU Clinic Munich (n = 35). Quality of life scores were assessed preoperatively and today in terms of physiological conditions, psychological conditions, and burden of therapy using a SF-12 survey adapted to the symptoms and impairments that chronic lymphedemas are known to cause. Our findings demonstrate a significant improvement in HRQoL following LVT, with notable enhancements in physiological and psychological conditions such as burden of therapy. Physiological conditions showed a significant positive change of 3.2648 (p < 0.01). Psychological conditions improved significantly by a factor of 2.0882 (p < 0.01). Additionally, the burden of therapy improved significantly by 1.5883 points (p < 0.01). Previous studies have already shown a significant improvement of HRQoL within the first postoperative years for patients treated by LVT. This study also demonstrates significant long-term improvement after LVT, thus underlining the effectiveness of using LVT to improve the quality of live for patients with both primary and secondary lymphedema long-term.

Long-term health-related quality of life and related factors in children with severe hemophilia A who received regular low-dose prophylaxiss

Objective: To investigate long-term health-related quality of life (HRQoL) and related factors in children with severe hemophilia A (HA) who received regular low-dose prophylaxis. Methods: Clinical data of severe HA children who began to receive regular low-dose coagulation factor Ⅷ (FⅧ) prophylaxis in Peking Union Medical College Hospital from January 1, 2008 to December 31, 2011 were retrospectively enrolled. The longest last follow-up period was May 31, 2023. The attendance of school or work and daily physical activity during the last follow-up were investigated. The patients were divided into full attendance group and incomplete attendence group according to attendance. The patients were divided into into exercise attainment group (reached Chinese sports recommendation) and exercise nonattainment group according to the exercise status. Barthel score was used to assess activities of daily living and Haemo-QoL was used to assess quality of life. Long-term HRQoL for children aged 8-16 years and patients aged 17 years and above were assessed using Haemo-QoL SF and Haem-A-QoL versions, respectively. Spearman correlation analysis was used to examine the correlation between treatment conditions and Haemo-QoL scores. Results: A total of 22 cases were enrolled, the prophylaxis initiation age ranged from 1.8-17.9 (10.4±3.8) years old. The average prophylactic FⅧ dose during low-dose prophylaxis was 24.2 U/kg per week and the follow-up time was 6.3-15.1 (9.6±2.8) years. At the last follow-up, the age of the patients was (20.2±5.4) years, of which 14 (63.6%) were adults over 18 years old. There were 15 patients in the full attendance group and 7 patients in the incomplete attendence group. Compared with the full attendance group, the incomplete attendence group had a smaller preventive treatment dose [M(Q1, Q3), (28.4±11.1) vs (15.3±3.7) U/kg, P=0.012], shorter preventive treatment time [148. 1 (18.6, 346.5) vs 48.0 (32.0, 156.9) weeks, P=0.017], and higher annual joint bleeding rate (AJBR) [12.5 (6.0, 22.3) vs 14.2 (13.2, 17.8) times, P=0.017]. There were 7 cases in the exercise attainment group and 15 cases in the exercise nonattainment group. Compared to the exercise attainment group, the exercise nonattainment group had shorter preventive treatment time[313. 7 (156.9, 366.0) vs 48.0 (16.5, 108.9) weeks, P=0.006], a higher AJBR [7.0 (5.1, 10.0) vs 23.3 (12.5, 29.8), P=0.003] and a higher hemophilia joint health score (HJHS) [9.0 (2.0, 15.5) vs 23.0 (12.0, 27.8), P=0.014]. Barthel score showed 81.8% (18 cases) of the patients' living ability was not influenced by the illness. In Haemo-QoL score, the total score of Haemo-QoL SF in 7 cases was (47.6±17.0) scores, the total score of Haem-A-QoL in 15 cases was (45.2±22.6) scores. The daily activity dimension of the Haem-A-QoL score was the lowest [38.2 (10.9, 45.5) scores], which was positively correlated with the starting age of prophylactic initiation (r=0.501, P=0.057), and negatively correlated with the duration of prophylaxis (r=-0.545, P=0.036). Conclusions: Regular low-dose prophylaxis could improve the long-term HRQoL of some children with severe HA, and children with higher prophylactic doses and longer prophylactic treatment time have higher quality of life.

Chronic Pain Following Breast Reconstruction: A Scoping Review.

Breast cancer survival rates have increased significantly, underscoring the importance of enhancing long-term health-related quality of life. Breast reconstruction following mastectomy has emerged as a common approach that contributes to improved health-related quality of life. Nonetheless, chronic pain following breast reconstruction is a prevalent issue that has a negative impact on overall well-being. To examine recent findings on chronic pain after breast reconstruction and progress in pain management, we performed a review of the literature through independent searches using the MEDLINE database within NIH National Library of Medicine PubMed. The review suggested that autologous reconstruction causes chronic postsurgical pain, especially at specific donor sites, whereas implant-based reconstruction does not seem to increase the risk of chronic pain. Moreover, certain operational and patient factors are also associated with chronic pain. Appropriate pain management can reduce chronic pain and prevent the transition from acute to chronic pain. This scoping review evaluated the characteristics of long-term chronic pain after breast reconstruction. The findings provide patients with important treatment information and will assist with their decision on their preferred treatment.

HTA39 Long-Term Health-Related Quality of Life in Esophageal Cancer Survivors: A Literature Review

HTA39 Long-Term Health-Related Quality of Life in Esophageal Cancer Survivors: A Literature Review

Lost in transition? Loss of follow-up and quality of life in adults after resection of choledochal malformation in childhood.

Choledochal malformation (CM) is a rare disease that can lead to malignancy and potential long-term sequelae despite surgical resection. There is no long-term follow-up data on patients after CM resection in Germany. We aimed to determine the long-term outcome of our patients with a duration of follow-up >10 years and focused on long-term sequelae and health-related quality of life (HRQOL). All patients who had undergone CM-resection in our department from 01/1978 to 06/2009 were contacted. Patients were interviewed about postoperative complications and their present medical attendance. HRQOL was determined using Pediatric Quality of Life Inventory 4.0 (PedsQL), version for adults. The PedsQL scales the HRQOL from 0 to 100, with higher scores indicating a better HRQOL. Scores were compared to those published for a healthy population. Out of 56 patients who were contacted, 23 (41 %) participated. The median age at time of surgery was 3.1 years (6days-16.1 years) and at time of the survey 24.3 years (11.1-53.8 years). Eighteen patients (78 %) had ceased their gastroenterologic follow-up at a median time of 4.3 years after surgery. Five (22 %) were still in gastroenterologic follow-up, two of these had an uneventful clinical course, and three (13 %) had ongoing complications attributed to the CM. One of these had undergone hemihepatectomy 34 years postoperatively due to bile duct stenosis, one had undergone removal of bile duct stones 14 years postoperatively, and one suffered from portal vein thrombosis with esophageal and jejunal varices. There was no mortality in our series. Median total HRQOL score was 89. There was no significant difference in the median total health, physical health, and psychosocial health scores of our patients in comparison to the healthy population. We confirmed that the majority of patients after CM resection are lost to follow-up. Those who answered our questionnaire showed a good HRQOL. Given the high rate of severe long-term complications and the life-long risk of malignancy, we recommend a transition program for all patients.

Long-Term Quality of Life After Pediatric Traumatic Brain Injury Treated in the Intensive Care Unit

BackgroundTo examine the long-term health-related quality of life (HRQL) after pediatric traumatic brain injury (TBI) treated in the intensive care unit (ICU). MethodsThis retrospective cohort study was conducted using data from four university hospital ICUs in Finland. Children aged < 18 years with TBI treated in the ICU during 2003 to 2013 were included. Patients alive at the end of 2020 were sent two different HRQL questionnaires 15/16-dimensional (15D/16D) and RAND-36 and questions regarding chronic diseases, socioeconomical status, and the need for health care support. HRQL was defined as poor when the 15D/16D score total score was below the age- and sex-matched mean population score in Finland minus the minimal clinically important difference. ResultsA total of 150 of 337 (44%) patients responded (n = 144 15D/16D responses). Median follow-up time was 11 years. Seventy patients (49%) had a poor HRQL according to 15D/16D score. Patients with TBI had significantly poorer 15D scores in every dimension when compared with the matched population mean values. A higher Helsinki CT score, mechanical ventilation, and female sex were associated with poor long-term HRQL according to the 15D/16D. Patients with poor 15D/16D scores also needed significantly more health care services and medications and had more comorbidities than patients with normal scores. A poor 15D/16D score was associated with lower socioeconomic status. ConclusionsHalf of long-term pediatric ICU-treated TBI survivors had poor HRQL 11 years after injury. More severe head computed tomographic findings at admission and female sex associated with poor HRQL.