Myelomeningocele: a Brazilian University Hospital experience

We analyzed 31 children with myelomeningocele born between July 1990 and July 2000. Follow-up median was 24 months (6-68months). Only 2 mothers had a known etiologic factor (diabetes mellitus). Twelve had the correct prenatal diagnosis. All children were born at term; 23 by cesarean; 13 had rupture of the membrane. Surgical correction had a 4 days median (1 to 44 days). Lumbosacral lesions were the most frequent (46%). Thirty patients were hydrocephalic, shunt was placed in 27. Meningitis was 4 times more frequent in shunted patients. Seven became epileptic (19.4%). Denver II test showed significant delay in gross motor development . Neurogenic bladder was diagnosed in 12 patients. Congenital clubfoot was the main orthopedic malformation (53%). Six infants died. Nowadays, 17 patients are being followed. A multidisciplinary approach probably helps for a better quality of life.

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Integrated multidisciplinary diagnostic approach for dementia care: Randomised controlled trial

The British Journal of Psychiatry ◽

10.1192/bjp.bp.107.035204 ◽

2008 ◽

Vol 192 (4) ◽

pp. 300-305 ◽

Cited By ~ 46

Author(s):

Claire A. G. Wolfs ◽

Alfons Kessels ◽

Carmen D. Dirksen ◽

Johan L. Severens ◽

F. R. J. Verhey

Keyword(s):

Quality Of Life ◽

Multidisciplinary Approach ◽

Intervention Group ◽

Dementia Care ◽

Clinical Effects ◽

Health Related Quality ◽

Related Quality ◽

Health Related

BackgroundAn integrated multidisciplinary approach to dementia is often recommended but has rarely been evaluated.AimsTo evaluate the clinical effects of an integrated multidisciplinary diagnostic facility for psychogeriatric patients.MethodPatients suspected of having complex psychogeriatric problems were randomly allocated to the intervention (n=137) or to treatment as usual (n=93). They were assessed at baseline, and at 6 months and 12 months follow-up by means of personal interviews with the patient's proxy. The primary outcome was health-related quality of life, assessed using the visual analogue scale (VAS) of the EuroQd measure, EQ-5D.ResultsHealth-related quality of life had improved at 6 months in the intervention group, whereas that of the control group had decreased. Furthermore, more patients in the intervention group experienced a clinically relevant improvement of 10 points or more on the VAS at both follow-up measurements.ConclusionsAn integrated multidisciplinary approach improves dementia care.

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TREATMENT OF SPINAL TUMORS USING CYBERKNIFE FRACTIONATED STEREOTACTIC RADIOSURGERY

Neurosurgery ◽

10.1227/01.neu.0000338072.30246.bd ◽

2009 ◽

Vol 64 (2) ◽

pp. 297-307 ◽

Cited By ~ 79

Author(s):

Gregory J. Gagnon ◽

Nadim M. Nasr ◽

Jay J. Liao ◽

Inge Molzahn ◽

David Marsh ◽

...

Keyword(s):

Quality Of Life ◽

Stereotactic Radiosurgery ◽

University Hospital ◽

Postoperative Treatment ◽

Spinal Tumors ◽

Radiation Toxicity ◽

Pain Scores ◽

Component Scores

Abstract OBJECTIVE Benign and malignant tumors of the spine significantly impair the function and quality of life of many patients. Standard treatment options, including conventional radiotherapy and surgery, are often limited by anatomic constraints and previous treatment. Image-guided stereotactic radiosurgery using the CyberKnife system (Accuray, Inc., Sunnyvale, CA) is a novel approach in the multidisciplinary management of spinal tumors. The aim of this study was to evaluate the effects of CyberKnife stereotactic radiosurgery on pain and quality-of-life outcomes of patients with spinal tumors. METHODS We conducted a prospective study of 200 patients with benign or malignant spinal tumors treated at Georgetown University Hospital between March 2002 and September 2006. Patients were treated by means of multisession stereotactic radiosurgery using the CyberKnife as initial treatment, postoperative treatment, or retreatment. Pain scores were assessed by the Visual Analog Scale, quality of life was assessed by the SF-12 survey, and neurological examinations were conducted after treatment. RESULTS Mean pain scores decreased significantly from 40.1 to 28.6 after treatment (P < 0.001) and continued to decrease over the entire 4-year follow-up period (P < 0.05). SF-12 Physical Component scores demonstrated no significant change throughout the follow-up period. Mental Component scores were significantly higher after treatment (P < 0.01), representing a quality-of-life improvement. Early side effects of radiosurgery were mild and self-limited, and no late radiation toxicity was observed. CONCLUSION CyberKnife stereotactic radiosurgery is a safe and effective modality in the treatment of patients with spinal tumors. CyberKnife offers durable pain relief and maintenance of quality of life with a very favorable side effect profile.

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Health-Related Quality of Life in Survivors of Severe COVID-19 of a University Hospital in Northern Portugal

Acta Médica Portuguesa ◽

10.20344/amp.16277 ◽

2021 ◽

Vol 34 (9) ◽

pp. 601

Author(s):

Joana Fernandes ◽

Liliana Fontes ◽

Isabel Coimbra ◽

José Artur Paiva

Keyword(s):

Quality Of Life ◽

Critical Illness ◽

University Hospital ◽

Health Related Quality ◽

Whodas 2.0 ◽

Related Quality ◽

Health Related ◽

Anxiety Depression

Introduction: Long-term health impairments are often experienced among survivors of critical illness, which may have a negative impact on their quality of life. The aim of this study was to characterize COVID-19 survivors of critical illness and to evaluate health-related quality of life and disability following hospital discharge.Material and Methods: This is a retrospective case-series study that included COVID-19 survivors admitted to the Intensive Care Medicine Department of a University Hospital. Follow-up evaluation was performed between the 30th and the 90th day after discharge. Quality of life was explored using the five-level version of the EQ-5D instrument (EQ-5D-5L) and functionality using the 12-question World Health Organization Disability Assessment Schedule 2.0 (WHODAS 2.0).Results: Forty-five survivors were enrolled, 28 (62.2%) men, median age 63.0 years. The EQ-5D-5L questionnaire showed moderate to extreme problems in some dimension in 29 patients (64.4%): mobility in six (13.3%), self-care in seven (13.3%), usual activities in 23 (51.1%), pain/discomfort in 14 (31.1%) and anxiety/depression in 17 (37.8%). When using the 12-question WHODAS 2.0 questionnaire, moderate to extreme disability was reported in some question in 37 patients (82.2%): 19 (42.2%) in standing for long periods, 18 (40.0%) in long-distance walking; 14 (31.1%) on taking care of household responsibilities and 17 (37.8%) in their day-to-day work; 23 (51.1%) felt emotionally affected by their health problems.Discussion: Based on COVID-19 survivors-reported outcomes after critical illness, mobility, pain/discomfort, and anxiety/depression were the main problems that persisted one to three months after hospital discharge.Conclusion: An organized follow-up structure is crucial to improve health-related quality of life in critical COVID-19 survivors.

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Results of surgical treatment of children with PFAPA syndrome

Medical Council ◽

10.21518/2079-701x-2019-17-244-251 ◽

2019 ◽

pp. 244-251

Author(s):

A. S. Yunusov ◽

T. I. Garashchenko ◽

P. I. Belavina ◽

A. G. Ryazanskaya ◽

E. V. Molodtsova ◽

...

Keyword(s):

Quality Of Life ◽

Surgical Treatment ◽

Multidisciplinary Approach ◽

Pediatric Population ◽

Quality Of Life Indicators ◽

Before And After ◽

Pfapa Syndrome ◽

Primary School Age

Rationale. Currently, the literature describes about 374 cases of Marshall syndrome. According to some authors, the prevalence of Marshall syndrome is 2.3 per 10,000 children, in general, the epidemiology of PFAPA syndrome in the pediatric population is unknown.Purpose. The aim of our study is to justify surgical treatment in children with Marshall syndrome. Objectives. The objectives of this study are to give a comparative assessment of the effectiveness of tonsillectomy and adenotonzyllectomy for this syndrome and to evaluate the quality of life indicators before and after surgical treatment.Materials and methods. The study included 26 patients with Marshall syndrome, of which 18 patients underwent adenotonzyllectomy and 8 patients underwent bilateral tonsillectomy. A clinical case of a typical manifestation of Marshall syndrome is also described, and follow-up results of the effectiveness of surgical treatment for Marshall syndrome are presented. In the course of the work, an adapted questionnaire was developed to assess the quality of life of parents of children with Marshall syndrome.Results. The result of our work is the fact that in relation to the relief of PFAPA-syndrome, children of preschool and primary school age have more effective adenotonsillectomy (88.2%), while tonsillectomy was effective only in 55.6% of patients.Conclusion. A multidisciplinary approach is required to address the diagnosis and treatment of Marshall syndrome.

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Patients with psychiatric diagnoses have lower quality of life than other patients with juvenile rheumatic disease: a prospective study

Rheumatology ◽

10.1093/rheumatology/keab150 ◽

2021 ◽

Author(s):

Silja Kosola ◽

Heikki Relas

Keyword(s):

Quality Of Life ◽

Disease Activity ◽

Transition Phase ◽

University Hospital ◽

Psychiatric Diagnoses ◽

Adult Care ◽

The Difference ◽

Lower Hrqol

Abstract Introduction Transition of adolescents with chronic diseases from pediatric healthcare to adult care requires attention to maintain optimal treatment results. We examined changes in health-related quality of life (HRQoL) and disease activity among juvenile idiopathic arthritis (JIA) patients with or without concomitant psychiatric diagnoses after transfer to an adult clinic. Methods We prospectively followed 106 consecutive patients who were transferred from the New Children’s Hospital to the Helsinki University Hospital Rheumatology outpatient clinic between April 2015 and August 2019 and who had at least one follow-up visit. HRQoL was measured using 15D, a generic instrument. Results The patients’ median age at transfer was 16 years and disease duration 4.0 years. Patients were followed for a median of 1.8 years. Disease activity and overall HRQoL remained stable, but distress (dimension 13 of 15D) increased during follow up (P=0.03). At baseline, patients with at least one psychiatric diagnosis had lower overall 15D scores (0.89±0.14 vs. 0.95±0.05, P<0.01) and higher disease activity (Disease Activity Score 28; 1.88±0.66 vs. 1.61±0.31, P=0.01) than patients without psychiatric diagnoses. The difference in overall 15D persisted over the study period. Conclusions Transition phase JIA patients with psychiatric diagnoses had lower HRQoL than other JIA patients. Despite reduced disease activity and pain, HRQoL of patients with psychiatric diagnoses remained suboptimal at the end of follow-up. Our results highlight the necessity of comprehensive care and support for transition phase JIA patients.

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Experienced pain after stroke: a cross-sectional 5-year follow-up study

BMC Neurology ◽

10.1186/s12883-019-1584-z ◽

2020 ◽

Vol 20 (1) ◽

Cited By ~ 3

Author(s):

Emma Westerlind ◽

Ramanjit Singh ◽

Hanna C. Persson ◽

Katharina S. Sunnerhagen

Keyword(s):

Quality Of Life ◽

Pain Treatment ◽

University Hospital ◽

Cross Sectional ◽

Factors Associated ◽

Post Stroke ◽

Explanatory Factors ◽

Experienced Pain

Abstract Background Stroke is one of the most common cause of disability worldwide. Pain is common in both stroke survivors and in the general population. Consequences of post-stroke pain (PSP) include reduced quality of life and are important to consider. The aim of the current study was to explore the experience of pain 5 years after stroke, and factors associated with the experience of pain. Methods Inclusion criteria were: First ever stroke, treated at Sahlgrenska University Hospital, Sweden, during an 18 months period in 2009–2010, aged 18 years or older. Furthermore, the participants had to respond to a set of questionnaires 5 years post-stroke. Baseline data were collected from medical records and follow-up data from the set of questionnaires. The primary outcome was based on the question Do you experience pain? Predictors and explanatory factors for experiencing more frequent pain were analysed with logistic regression. Results A total of 281 participants were included. Almost 40% experienced pain to some degree 5 years post-stroke (15% reported pain frequently), and 25% felt that their needs for pain treatment were not met. The participants experiencing more frequent pain reported poorer quality of life, self-perceived health status and recovery post-stroke. Functional dependency at discharge from hospital, experiencing depression at follow up and restricted mobility at follow up were all associated with more frequent pain. Conclusion Pain is common 5 years post-stroke and the treatment is not perceived as optimal. The persons experiencing more frequent pain seem to rate their health and recovery worse than the persons experiencing less frequent pain. Most of the factors associated with more frequent pain were treatable and this emphasize the importance of standardised follow-up care that takes pain into consideration.

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Conservative management of knee arthropathy in a patient with Klippel Trenaunay syndrome

Jornal Vascular Brasileiro ◽

10.1590/1677-5449.200010 ◽

2020 ◽

Vol 19 ◽

Author(s):

Fanny Rodríguez Santos ◽

Victoria Loson ◽

Agustín Coria ◽

Hugo Martínez

Keyword(s):

Quality Of Life ◽

Soft Tissue ◽

Vascular Malformation ◽

Multidisciplinary Approach ◽

Venous Malformations ◽

Physiotherapy Program ◽

Associated Conditions ◽

Klippel Trenaunay Syndrome

Abstract Klippel-Trenaunay syndrome (KTS) is a rare vascular malformation characterized by capillary malformation, venous malformations, and soft tissue or bone hypertrophy that affect the extremities in most cases. Knee or hip arthropathy are common associated conditions and cause serious disability. We present the case of a patient with a diagnosis of KTS and severe knee arthropathy. A 34-year-old man with KTS was referred to our hospital with severe knee arthropathy, with the joint fixed in a 90° position. CT Angiography and MRI of the left leg showed important varicose development of the superficial venous system with intraarticular vessels. After discussion of the case by a multidisciplinary committee, the patient was enrolled on a physiotherapy program and had achieved significant improvements in movement and quality of life at 12-month follow-up. Treatment of KTS is primarily conservative and a multidisciplinary approach is necessary.

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Longitudinal analysis of quality of life in patients treated for differentiated thyroid cancer

Acta Endocrinologica ◽

10.1530/eje-19-0550 ◽

2019 ◽

Vol 181 (6) ◽

pp. 671-679 ◽

Cited By ~ 4

Author(s):

Evert F S van Velsen ◽

Elske T Massolt ◽

Hélène Heersema ◽

Boen L R Kam ◽

Tessa M van Ginhoven ◽

...

Keyword(s):

Quality Of Life ◽

Thyroid Cancer ◽

General Population ◽

Differentiated Thyroid Cancer ◽

University Hospital ◽

Cross Sectional ◽

Initial Surgery ◽

Over Time

Objective Earlier cross-sectional studies showed that patients with differentiated thyroid cancer (DTC) have a significant reduction of quality of life (QoL) compared to controls. However, recent longitudinal studies showed mixed results and had relative short follow-up or lacked knowledge about QoL before initial surgery. Therefore, we initiated a longitudinal study to assess changes of QoL in patients undergoing treatment for DTC. Methods We prospectively included patients, aged 18–80 years, who were treated for DTC at a Dutch university hospital. Using questionnaires, QoL was assessed before surgery, just before radioiodine (RAI) therapy, and regularly during follow-up. Repeated measurement analysis was used to assess changes of QoL over time, and we explored the influence of different characteristics on QoL. Results Longitudinal QoL assessments were available in 185 patients (mean age 47 years; 71% women). All patients were treated according to the Dutch guidelines with total thyroidectomy followed by RAI (83% after thyroid hormone withdrawal). Median time between baseline and final questionnaire was 31 months, and patients completed a median of three questionnaires. QoL at baseline was lower than that in the general population, developed non-linear over time, was lowest around RAI therapy, and recovered over time. Females, younger patients, and patients with persistent hypoparathyroidism had lower QoL scores. Conclusions In a population of DTC patients, QoL before initial therapy is already lower than that in the general population. Thereafter, QoL develops non-linearly over time in general, with the lowest QoL around RAI therapy, while 2 to 3 years later, it approximates baseline values.

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Evaluate the Results at Minimum 2-Years of Treating Rotator Cuff Tear by Arthroscopic Surgery

Open Access Macedonian Journal of Medical Sciences ◽

10.3889/oamjms.2019.358 ◽

2019 ◽

Vol 7 (24) ◽

pp. 4199-4203

Author(s):

Dung Tran Trung ◽

Duc Nguyen Anh ◽

Tuan Tran Duc ◽

Van Nguyen Trung ◽

Thien Chu Dinh

Keyword(s):

Quality Of Life ◽

Rotator Cuff ◽

Rotator Cuff Tear ◽

Arthroscopic Surgery ◽

University Hospital ◽

Rotator Cuff Tears ◽

Average Score ◽

Cuff Tear

BACKGROUND: Rotator cuff tear (RCT) is a common injury of the shoulder, especially middle-aged people. Nonoperative treatment, cortisone injections are only effective at an early stage. Open surgery causes postoperative atrophy of the deltoid muscle, so results are limited. Arthroscopic rotator cuff repair surgery has been performed in Vietnam for about ten years, with many advantages such as the ability to accurately assess the lesions and less invasive procedure. In order to have a clearer view, we performed a mid-term assessment of the effectiveness of this surgery. AIM: Evaluate results over 2 years of patients with rotator cuff tears treated with arthroscopic surgery and their quality of life. METHOD: A group of 30 patients were diagnosed with RCT and surgery by arthroscopy to treat at Hanoi Medical University Hospital and Saint Paul Hospital between Jun 2015 and April 2017. The results of the surgeries were assessed by the degree of pain, muscle power, motion of the shoulder joint according to UCLA shoulder score. Evaluate the quality of life through the Rotator Cuff-Quality of Life (RC-QoL) index. RESULTS: The average age was 60.7 years. Female / male ratio was 1.3. Thirty-six months ± 6.41 was the average follow-up time (min 27 – max 50 months). The shoulder function is recorded according to UCLA has an average score of 30.9, therein good and excellent result were 90 %. The mean RC-QoL index was 91.5%. CONCLUSION: Treatment of RCT by arthroscopic surgery that has been evaluated for a minimum of 2 years follow-up showed good results and high quality of patient’s life.

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Study protocol for You.Mind!: boosting first-line mental health care for YOUngsters suffering from chronic conditions with mindfulness: a randomised staggered within-subjects design

BMJ Open ◽

10.1136/bmjopen-2020-042648 ◽

2021 ◽

Vol 11 (4) ◽

pp. e042648

Author(s):

Merle Kock ◽

Eline Van Hoecke ◽

Filip Raes ◽

Katleen Van der Gucht

Keyword(s):

Quality Of Life ◽

Emotional Distress ◽

Chronic Conditions ◽

Ethics Committee ◽

Repeated Measurements ◽

University Hospital ◽

Baseline Phase ◽

Within Subjects

IntroductionAdolescents with chronic conditions often experience high levels of stress, anxiety and depression, and reduced quality of life. Mindfulness-based interventions (MBIs) have been found to improve emotional distress in clinical and non-clinical populations and are a promising technique to support adolescents with chronic conditions in managing their symptoms and ultimately enhance their quality of life.Methods and analysisTo test the effects of an MBI on emotional distress and quality of life and delineate the underlying mechanisms, the You.Mind! study uses a randomised staggered within-subjects design. Thirty adolescents with a chronic condition will be randomised to a baseline phase of 14–28 days followed by an MBI, consisting of four online group sessions and online support spread over 8 weeks. Outcomes will be assessed by short, repeated measurements throughout the baseline, intervention and follow-up phases and by standardised questionnaires and experience sampling measures before randomisation, at postintervention and at 3-months follow-up. Analysis will be based on general linear modelling and multilevel mixed-effects modelling.Ethics and disseminationEthical approval was obtained from the Ethics Committee Research UZ/KU Leuven and the Ethics Committee of Ghent University Hospital and Ghent University (S63485). Results will be disseminated through presentations at public lectures, scientific institutions and meetings, and through publication in peer-reviewed journals.Trial registration numberNCT04359563.

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