P101 The leeds paediatric brain arteriovenous malformation (BAVM) outcomes

2019 ◽  
Vol 90 (3) ◽  
pp. e49.1-e49
Author(s):  
N Kalra ◽  
SP Solanki ◽  
AK Tyagi

ObjectivesThe commonest cause of stroke in a paediatric population is a ruptured brain ateriovenous malformation (bAVM). We aim to assess the functional outcomes of patients who have undergone operative intervention at our unit for ruptured and non-ruptured bAVMs.DesignA single centre retrospective cohort analysis of paediatric bAVM patients.Subjects10 paediatric patients at time of surgery between January 2007 – December 2017 mean age at follow up 15.9 years, range 2–26 years, mean time to follow up 6.3 years, range 1.5–11.2 years.MethodsPatients with bAVMs were identified via the paediatric neurovascular database. They were contacted via telephone and the Paediatric Quality of Life (PedsQL) questionnaire administered via parent proxy if the patient was under 18, and by the patient if above 18. Functional outcomes were assessed using the PedsQL questionnaire score and converted in to a health-related quality of life (HRQOL) score.Results10 patients underwent resection of their bAVMS, 9 survived and 7 were contactable. The mean HRQOL score 88.9 points, range 65.2–100. Only one patient had a HRQOL score below the mean of a child with chronic disease.ConclusionsThe mean HRQOL outcome score of operated paediatric bAVM was similar to that of healthy children. Patients having bAVM surgery within our unit have had a good functional outcome. Although there are small numbers in this series, there is a low incidence of operated paediatric bAVMs. Our findings suggests that such operations should be undertaken in units with expertise.

Author(s):  
Silva Hovsepian ◽  
Mostafa Qorbani ◽  
Mohammad Esmaeil Motlagh ◽  
Aryan Madady ◽  
Morteza Mansourian ◽  
...  

AbstractBackground:Considering the role of different ethnical, cultural and geographical factors in health related quality of life (HRQOL) as well as the perception of different populations regarding various weight disorders, we aimed to evaluate the association between body mass index (BMI) and HRQOL in Iranian children and adolescents.Methods:This cross-sectional study was part of the Weight Disorders Survey of the CASPIAN-IV study. During this study, students aged 6–18 years from urban and rural areas of 30 provinces of Iran were selected. HRQOL of the students was evaluated by using the Persian version of the Pediatric Quality of Life inventory (PedsQL™ 4.0™ 4.0) Generic Core Scales. The mean of total HRQOL and its subscales were compared in underweight, normal weight, overweight and obese students.Results:The mean of total HRQOL, physical functioning and psychological functioning scores in the total population were 83.31, 84.25 and 82.79, respectively. The mean of the total HRQOL score and the psychosocial score were significantly lower in underweight students aged 6–12 years than in other groups (p<0.05). The mean of the total HRQOL score and psychosocial score were significantly lower in obese students aged 13–18 years than in other groups (p<0.05). Overweight and obesity was negatively associated with total HRQOL, psychosocial and school functioning subscales (p<0.05). There was a significant negative association between emotional functioning and obesity (p<0.05).Conclusions:The findings or this study support the importance of personal perception and cultural norm roles in HRQOL. Given the association between weight disorders and psychosocial health, it is suggested that social and cultural factors have a more crucial role in the HRQOL of children and adolescents.


Reumatismo ◽  
2019 ◽  
Vol 71 (2) ◽  
pp. 62-67
Author(s):  
T. Schioppo ◽  
L. Scalone ◽  
P. Cozzolino ◽  
L. Mantovani ◽  
G. Cesana ◽  
...  

Systemic sclerosis (SSc)-related Raynaud’s phenomenon (RP) and digital ulcers (DU) can impair health-related quality of life (HRQoL). The aim of our study was to estimate HRQoL in SSc patients treated with two different intravenous (IV) iloprost (ILO) regimens and in patients not treated with IV ILO. 96 consecutive SSc patients were enrolled in a pragmatic, prospective and non-randomized study, and divided into 3 groups: not requiring therapy with IV ILO (N=52), IV ILO once monthly (N=24) or IV ILO for 5 consecutive days every 3 months (N=20). Patients were followed up for three months. We assessed HRQoL using the generic preference-based questionnaire EQ-5D-5L. We conducted multiple regression analyses to estimate, in each treatment group, the mean general health (GH) and the mean utility index of the EQ-5D-5L, adjusting for possible confounders. The mean adjusted utility index and GH score, after three months’ follow-up, were not different in the three groups: IV ILO was able to make patients requiring IV ILO similar to those not requiring it. Moreover, there was no difference in this model between the two ILO regimens (1 day monthly vs 5 consecutive days every 3 months). The two different IV ILO regimens (the most appropriate regimen was decided according to patients’ characteristics and needs) were able to stabilize HRQoL in RP secondary to SSc non-adequately controlled by oral therapy.


2017 ◽  
Vol 156 (3) ◽  
pp. 435-441 ◽  
Author(s):  
Sarah Drejet ◽  
Stacey Halum ◽  
Matthew Brigger ◽  
Elaine Skopelja ◽  
Noah P. Parker

Objectives (1) To systematically identify studies evaluating the use of intralesional cidofovir or bevacizumab as an adjunct in adult recurrent respiratory papillomatosis, determine disease severity and functional outcomes, and assess study quality. (2) To compare outcomes between the 2 adjuncts. Data Sources Ovid Medline, EMBASE, Scopus, and Clinical-Trials.gov . Review Methods Data sources were systematically searched. A priori inclusion and exclusion criteria were instituted. Quality was evaluated with the Newcastle-Ottawa Quality Assessment Scale. A priori criteria were instituted to select studies suitable for comparison. Results A total of 254 identified studies led to 16 for full-text review, including 14 for cidofovir and 2 for bevacizumab. Disease severity outcomes were reported in all studies, including remission rate, Derkay scores, time interval between operations, and/or lesion volume reduction. Remission rate was the most commonly reported (14 studies). Functional outcomes were reported in 5 studies (36%), including quality-of-life questionnaires, acoustic/aerodynamic analysis, and perceptual voice analysis. Voice-related quality of life was the most commonly reported (2 studies). Of 16 studies, 12 (75%) were rated poor quality. Reports almost invariably showed improved disease severity and functional outcomes following treatment; however, variable outcome measures and inadequate follow-up disallowed direct comparison of adjuncts. Conclusion Remission rate was the most commonly reported disease severity outcome, and voice-related quality of life was the most commonly reported functional outcome. Most studies were of poor quality. No studies met criteria for comparative analysis between adjuncts. Future research would be improved by reporting consistent and comparable disease severity and functional outcomes, treatment protocols, and follow-up.


2016 ◽  
Vol 45 (1) ◽  
pp. 70-76 ◽  
Author(s):  
Gregory L. Cvetanovich ◽  
Jonathan C. Riboh ◽  
Annemarie K. Tilton ◽  
Brian J. Cole

Background: Existing studies of autologous chondrocyte implantation (ACI) in adolescent patients have primarily reported outcomes that have not been validated for cartilage repair and have failed to include measures of general health or health-related quality of life. Purpose: This study assesses validated knee-specific functional outcomes and health-related quality of life after ACI in adolescent patients. Study Design: Case series; Level of evidence, 4. Methods: Patients younger than 18 years who underwent ACI between 1999 and 2011 with a minimum 2-year clinical follow-up were identified from a prospectively collected database. A total of 37 patients were included in the analysis. Patient demographic data and pre- and postoperative functional outcomes scores were collected and chondral lesion characteristics were assessed. Primary outcome measures were the International Knee Documentation Committee (IKDC) subjective score and the Knee Injury and Osteoarthritis Outcome Score–Quality of Life (KOOS-QOL) subscore; secondary outcome measures were Short Form–12 (SF-12) and other KOOS subscores. In subgroup analyses, we assessed whether primary outcome results differed based on lesion location, concurrent meniscal allograft transplantation (MAT), and subsequent surgery after ACI. Results: Study patients had a mean 4.6 ± 2.4 years of follow-up, a mean age of 16.7 ± 1.5 years, and a mean lesion size of 4.0 ± 2.2 cm2. The IKDC subjective score improved from 34.9 preoperatively to 64.6 postoperatively (mean improvement, 29.7 points [95% CI, 20.7 to 38.7 points]; P < .001) and the KOOS-QOL subscore improved from 24.3 to 55.3 (mean improvement, 31.0 points [95% CI, 21.3 to 40.7 points]; P < .001) at final follow-up. All other KOOS subscales and the SF-12 physical component score also showed significant improvements ( P < .008 in all cases), whereas the SF-12 mental component score showed no improvement ( P = .464). There was a 37.8% rate of subsequent surgery after ACI (most commonly, chondral debridement [54%], meniscectomy [11%], microfracture [9%], and loose body removal [9%]). Subgroup analysis showed no effect of lesion location, concurrent MAT, or subsequent surgery on improvement in IKDC subjective scores and KOOS-QOL subscores ( P > .05 in all cases). Conclusion: ACI is an effective treatment for adolescent patients with symptomatic, large chondral lesions, resulting in significant improvements in knee-specific functional outcome scores and health-related quality of life scores. Although patients must be cautioned on the relatively high reoperation rate (37.8%) and limitations in knee function even after ACI, all patients in this study exhibited improvements over preoperative knee function at the most recent follow-up regardless of ACI location, concurrent MAT, or subsequent surgery.


2016 ◽  
Vol 22 ◽  
pp. 4406-4414 ◽  
Author(s):  
Brandon Michael Henry ◽  
Waldemar Wrażeń ◽  
Leif Hynnekleiv ◽  
Michał Kłosiński ◽  
Przemysław A. Pękała ◽  
...  

2019 ◽  
Vol 101 (1) ◽  
pp. 40-43
Author(s):  
KM Konieczny ◽  
TN Pitts-Tucker ◽  
TC Biggs ◽  
MB Pringle

Introduction The T-14 questionnaire is a validated outcome measurement tool to assess the value of paediatric tonsillectomy from a parent’s perspective. There is a paucity of data regarding the long-term postoperative effects of tonsillectomy on quality of life in the paediatric population. Our previous study assessed T-14 scores up to year 2 postoperatively, with this study extending follow-up to 5 years. Materials and methods We undertook a prospective uncontrolled observational study examining 54 paediatric patients undergoing tonsillectomy at Portsmouth Hospitals NHS Trust. Parents of children undergoing surgery were invited to complete a T-14 questionnaire preoperatively, as well as at 3 months, 6 months, 1 year, 2 years and now 5 years postoperatively. Results In total, 44 of 54 patients completed questionnaires preoperatively and at all postoperative time points, with 46 being completed at 5 years. There was a highly significant (P < 0.001) difference between the preoperative scores and all other measured T-14 scores postoperatively. The mean score preoperatively was 33.3 compared with 1.0 at 5 years. Conclusions This is the first study to assess long-term quality of life following paediatric tonsillectomy using the T-14 questionnaire. The benefits of tonsillectomy on long-term quality of life further confirms its value within the paediatric population.


Author(s):  
Wen-Chieh Chang ◽  
Kuei-Hsiang Hsu ◽  
Chi-Kuang Feng

Purpose The purpose of this study was to investigate pulmonary function and health-related quality of life after traditional growing rod (TGR) procedures. Methods Between January 2006 and December 2017, a retrospective observational study of 17 early onset scoliosis (EOS) patients with a mean follow-up of 6.2 years (2.3 to 10.4) was conducted. The forced expiratory volume in one second (FEV1), expiratory forced vital capacity (FVC) and 24-Item Early Onset Scoliosis Questionnaire (EOSQ-24) score before the index surgery and at last follow-up were investigated. Results The mean percentage of predicted FEV1 improved from 50% (20% to 86%) to 53% (15% to 80%; p = 0.08); and the mean percentage of predicted FVC improved from 51% (24% to 81%) to 55% (25% to 89%; p = 0.06). The mean EOSQ-24 score was 78.2 (58 to 90) preoperatively and 77.2 (55 to 88) at last follow-up, there was no statistical difference (p = 0.70). The subdomain scores of pulmonary function (p < 0.01) and daily living (p < 0.01) significantly improved, whereas the subdomain scores of pain (p < 0.01), emotion (p < 0.01) and satisfaction (p = 0.02) significantly declined at last follow-up. Conclusion The TGR procedure was associated with stable pulmonary function and decline in EOSQ-24 pain, emotion and satisfaction scores. Level of Evidence Level III, retrospective cohort study.


2020 ◽  
Vol 22 (9) ◽  
pp. 1379-1387 ◽  
Author(s):  
Bree R Eaton ◽  
Saveli Goldberg ◽  
Nancy J Tarbell ◽  
Miranda P Lawell ◽  
Sara L Gallotto ◽  
...  

Abstract Background The purpose of this analysis is to report long-term health-related quality of life (HRQoL) among brain tumor survivors treated with proton therapy (PRT) at a very young age. Methods Fifty-nine children &lt;4 years old received PRT between 2000 and 2011. Forty families participated. HRQoL was assessed by child self-report (CSR; age ≥5) and parent proxy report (PPR; age 2+) using the PedsQL Core. Results The median age was 2.5 years (range, 0.3–3.8) at PRT and 9.1 years (5.5–18) at last follow-up. The most common diagnoses were ependymoma (n = 22) and medulloblastoma (n = 7). Median follow-up is 6.7 years (3–15.4). Follow-up mean CSR and PPR scores were: total core (78.4 and 72.9), physical (82.9 and 75.2), psychosocial (76.0 and 71.6), emotional (74.4 and 70.7), social (81.2 and 75.1), and school (72.4 and 69.9). Parent-reported HRQoL fell within a previously defined range for healthy children in 37.5% of patients, and for children with severe health conditions in 45% of patients. PPR HRQoL was stable from baseline to last follow-up among all domains except for social functioning. History of gastrostomy tube was significantly associated with poorer CSR and PPR HRQoL on multivariable analysis. Ninety percent of children functioned in a regular classroom, 14 (36%) used a classroom aid, 9 (23%) used an outside tutor, and 18 (46%) had an individualized education plan. Conclusion Long-term HRQoL among brain tumor survivors treated with PRT at a very young age is variable, with over a third achieving HRQoL levels commensurate with healthy children. Key Points 1. One third of survivors reported long-term HRQoL scores comparable to those of healthy children. 2. Treatment for hydrocephalus or a feeding tube was associated with significantly lower HRQoL. 3. Total core HRQoL scores remained stable from baseline to last follow-up.


2012 ◽  
Vol 15 (2) ◽  
pp. 103 ◽  
Author(s):  
Jing-bin Huang ◽  
Yong-tao Cao ◽  
Jian Liang ◽  
Xiao-dong Lv

<p><b>Objective:</b> The goal of the study was to evaluate the quality of life of children after the older corrective arterial switch operation (ASO) by means of the Pediatric Quality of Life Inventory (PedsQL), version 4.0.</p><p><b>Methods:</b> The records of 86 patients who had complete transposition of the great arteries plus a nonrestrictive ventricular septal defect, or a Taussig-Bing anomaly, and severe pulmonary arterial hypertension, and who underwent a corrective ASO at an older age (>6 months) between May 2000 and October 2008 were reviewed retrospectively. Eighty survivors were followed up, and the health-related quality of life of the survivors was evaluated with the PedsQL, version 4.0.</p><p><b>Results:</b> There were 6 hospital deaths. The mean (SD) follow-up interval was 3.5 � 2.3 years, and the mean age at last visit was 7.0 � 1.2 years. Two late deaths occurred, and 8 patients were lost to follow-up. Patients who underwent a corrective ASO at an older age showed acceptable scores for all scales, and they were all comparable with those of a healthy population.</p><p><b>Conclusions:</b> Our data suggest that the quality of life of children who undergo a corrective ASO at an older age (>6 months) is acceptable, compared with that of healthy children in China.</p>


2011 ◽  
Vol 26 (S1) ◽  
pp. s33-s33 ◽  
Author(s):  
J. Turner ◽  
J. Nicholl

BackgroundMost research into the outcomes of injury has focused on mortality rather than the physical, social, and psychological sequelae of non-fatal injuries. The health and long-term outcomes of a cohort of accidentally-injured patients were studied in order to assess the impact on quality of life.MethodsThe cohort of patients was derived from six previous studies spanning 1988–2003. Patients were followed-up with to ascertain if they were still alive, and survivors were sent a follow-up questionnaire in 2006. The questionnaire asked about current problems resulting from past injuries, use of health services, and measures of health related quality of life (the EQ-5D and SF-36 or Nottingham Health Profile (NHP)). A sample of 114 also received detailed face-to-face interviews.ResultsA total of 2,418 patients were followed-up on between 4–15 years post-injury, of whom 311 had died. There were 580 completed follow-up questionnaires, and of these 64% reported health problems related to past injuries. The mean EQ-5D score at follow-up was 0.132 tariff points below the mean for a normal age-sex matched population, and SF-36 scores were 5–15 points worse than population norms. At all ages, EQ-5D and SF-36 scores were similar to those of the normal population aged 75. Interviewed patients also reported substantially more disability than the general population. Increasing injury severity was associated with almost all aspects of worse health at follow-up, and severe lower extremity injuries were strongly associated with poorer outcomes.ConclusionsInjured patients continue to experience significant reductions in health and health-related quality of life for many years after their injury.


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