Psychiatric Functioning and Quality of Life in Young Patients With Cardiac Rhythm Devices

Due to its low prevalence, epidemiologic data on afibrinogenemia are limited and none are available on health-related quality of life (HRQoL). We conducted a cross-sectional international study to characterize the clinical features, the fibrinogen supplementation modalities and their impact on HRQoL in patients with afibrinogenemia. A total of 204 patients (119 adults and 85 children) from 25 countries were included. The bleeding phenotype was severe: 68 (33.3%) patients having at least one bleed per month and 48 (23%) a history of cerebral bleeding. About 35% (n=72) of patients were treated with fibrinogen concentrates or cryoprecipitates as prophylaxis, 18.1% (n=37) received more than one injection per week and 16.6% (n=34) were on home treatment. A thrombotic event was reported in venous and/or arterial territories by 37 (18.1%) patients. Thrombosis occurred even in young patients and recurrence was frequent (7.4%). The total HRQoL was lower in children than in adults. Discomfort linked to treatment and limitations to sports and leisure were the main concerns. Women and children were particularly affected in family relationships. In multivariate analyses, younger age, residence in Asia or Africa and a previous thrombotic event were statistically correlated with a worse HRQoL. In conclusion, our study underlines the severe bleeding and thrombotic phenotype and their impact on HRQoL in afibrinogenemia. The optimal strategy for fibrinogen supplementation needs to be determined.

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Reducing the Burden of Care: Multidisciplinary Management of Late-Manifested Crouzon Syndrome—A Case Report

Children ◽

10.3390/children8121122 ◽

2021 ◽

Vol 8 (12) ◽

pp. 1122

Author(s):

Sarah Achterrath ◽

Teresa Kruse ◽

Julia Neuschulz ◽

Isabelle Graf ◽

Joachim Zöller ◽

...

Keyword(s):

Quality Of Life ◽

Case Report ◽

Psychosocial Development ◽

Young Patients ◽

Crouzon Syndrome ◽

Burden Of Care ◽

Short Treatment ◽

Related Quality ◽

Health Related

The therapy of patients with Crouzon syndrome involves a multidisciplinary team. In most cases, this therapy is extensive, time-consuming, and exhausting for the patient. This case report illustrates a temporally coordinated therapy plan that succeeds in reducing the burden of care. Showing typical extraoral characteristics of Crouzon syndrome, the patient had a frontal and left-sided crossbite, and impaction of the maxillary canines. Multidisciplinary therapy included the extraction of multiple teeth, midface distraction at Le Fort III level, and alignment of the impacted teeth. Before starting, during, and after completion of the treatment, the patient’s oral health-related quality of life was assessed using COHIP-19. The combination of different treatment steps significantly reduced the duration of therapy. The therapy improved not only the patient’s oro- and craniofacial function, but also the patient’s facial appearance in a short treatment period. The patient’s quality of life improved considerably during this time. In the treatment of severe craniofacial anomalies, the highest priority should be given to keeping the burden of care low. All measures should encourage young patients’ appropriate psychosocial development despite extensive therapies, ensuring at the same time medically satisfactory treatment results.

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Disease-Specific Quality of Life in Young Patients With Tourette Syndrome

Pediatric Neurology ◽

10.1016/j.pediatrneurol.2012.10.006 ◽

2013 ◽

Vol 48 (2) ◽

pp. 111-114 ◽

Cited By ~ 25

Author(s):

Andrea E. Cavanna ◽

Chiara Luoni ◽

Claudia Selvini ◽

Rosanna Blangiardo ◽

Clare M. Eddy ◽

...

Keyword(s):

Quality Of Life ◽

Tourette Syndrome ◽

Young Patients ◽

Disease Specific

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Partial cystectomy: Is it a reliable option for the treatment of bladder

Canadian Urological Association Journal ◽

10.5489/cuaj.580 ◽

2013 ◽

Vol 5 (1) ◽

pp. 11 ◽

Cited By ~ 4

Author(s):

Yun-fei Xu ◽

Guang-chun Wang ◽

Jun-hua Zheng ◽

Bo Peng

Keyword(s):

Quality Of Life ◽

Young Patients ◽

Partial Cystectomy ◽

Mesenchymal Tumour ◽

Center Stage ◽

Primary Bladder

Bladder leiomyosarcoma is a unique mesenchymal tumour,accounting for less than 0.5% of all primary bladder malignancies.Bladder leiomyosarcoma used to be treated with radical surgeryin either old or young patients, often resulting in significantimpact on the patients’s quality of life after surgery. We reporton a case of bladder leiomyosarcoma in a 31-year-old femalewho was treated with partial cystectomy. Fortunately, no tumourmetastasis or relapse was observed during the 7-year follow-upperiod and the patient now has a good quality of life. We foundthat partial cystectomy may be an acceptable option to treat bladderleiomyosarcoma in the low MSKCC (Memorial Sloan-KetteringCancer Center) stage.

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Quality of Life in Patients with Psoriasis Seen in the Department of Dermatology, Antananarivo, Madagascar

BioMed Research International ◽

10.1155/2020/9292163 ◽

2020 ◽

Vol 2020 ◽

pp. 1-5

Author(s):

Fandresena Arilala Sendrasoa ◽

Naina Harinjara Razanakoto ◽

Volatantely Ratovonjanahary ◽

Onivola Raharolahy ◽

Irina Mamisoa Ranaivo ◽

...

Keyword(s):

Quality Of Life ◽

Negative Impact ◽

Young Patients ◽

The Body ◽

University Hospital ◽

Medical Decision ◽

Cross Sectional ◽

The Difference ◽

The Impact

Background. Psoriasis is a chronic, inflammatory, and multifactorial dermatosis that impairs quality of life (QoL). Health-related QoL has become an important element in medical decision-making along with the effectiveness and the harmlessness of the treatments. Objective. To assess the impact of psoriasis in the QoL of patients with psoriasis by using the DLQI scales. Methods. A cross-sectional study from January to June 2018 was conducted in the Department of Dermatology of the University Hospital Joseph Raseta Befelatanana, Antananarivo, Madagascar, including patients more than 18 years old with mild to severe psoriasis. The severity of psoriasis was assessed using the “Psoriasis Area and Severity Index (PASI)”. QoL of patients with psoriasis was evaluated by using the DLQI scales. Results. 80 patients were included, their mean age was 36.5 years, and the male to female was 1.5 : 1. The mean DLQI score was 13.8. Symptoms, feelings, and psychic were the most altered dimensions. QoL was impaired in young patients, single, having medium level education. Even though patients with disease duration more than 5 years had higher DLQI score than other patients, the difference was not statistically significant (p=0.36). Furthermore, the clinical presentation of psoriasis did not influence the patient’s QoL (p=0.73). Patients with nail involvement had QoL impaired but the difference with another localization was not statistically significant (p=0.2). The quality of life was influenced by body area involved. The higher the body surface area involved, the more QoL is impaired (p=0.002). Furthermore, the higher the PASI, the more QoL is altered (p=0.002). Conclusion. Psoriasis has a negative impact in the quality of life in Malagasy patients with psoriasis, especially in younger and single patients. Worse quality of life is correlated to severity of psoriasis.

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Quality of life assessment in children before and after a successful ablation for supraventricular tachycardia

Cardiology in the Young ◽

10.1017/s1047951120000256 ◽

2020 ◽

Vol 30 (3) ◽

pp. 413-417 ◽

Cited By ~ 2

Author(s):

M Cecilia Gonzalez Corcia ◽

Laura Peters ◽

Thierry Sluysmans ◽

Stephane Moniotte ◽

Karlien Carbonez ◽

...

Keyword(s):

Quality Of Life ◽

Negative Impact ◽

Accessory Pathway ◽

Young Patients ◽

Life Assessment ◽

Percutaneous Ablation ◽

Supraventricular Arrhythmias ◽

Ectopic Atrial Tachycardia ◽

Before And After

ABSTRACTBackground and Objectives:Young patients suffering from rhythm disorders have a negative impact in their quality of life. In recent years, ablation has become the first-line therapy for supraventricular arrhythmias in children. In the light of the current expertise and advancement in the field, we decided to evaluate the quality of life in young patients with supraventricular arrhythmias before and after a percutaneous ablation procedure.Methods:The prospective cohort consisted of patients <18 years with structurally normal hearts and non-pre-excited supraventricular arrhythmias, who had an ablation in our centre from 2013 to 2018. The cohort was evaluated with the PedsQL™ 4.0 Generic Core Scales self-questionnaire prior to and post-ablation.Results:The final cohort included 88 patients consisted of 52 males (59%), with a mean age at ablation of 12.5 ± 3.3 years. Forty-two patients (48%) had a retrograde-only accessory pathway mediating the tachycardia, 38 (43%) had atrio-ventricular nodal re-entrant tachycardia, 7 (8%) had ectopic atrial tachycardia, and 1 (1%) had atrial flutter. The main reason for an ablation was the patient’s choice in 53%. There were no severe complications. Comparison between the baseline and post-ablation assessments showed that patients reported significant improvement in the scores for physical health, emotional and social functioning, as well as in the total scores.Conclusions:The present study demonstrates that the successful treatment of supraventricular arrhythmias by means of an ablation results in a significant improvement in the quality of self-reported life scores in young patients.

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Mastectomy versus conservative surgical treatment: the impact on the quality of life of women with breast cancer

Revista Brasileira de Saúde Materno Infantil ◽

10.1590/s1519-38292010000100005 ◽

2010 ◽

Vol 10 (1) ◽

pp. 51-57 ◽

Cited By ~ 8

Author(s):

Daniela Francescato Veiga ◽

Fabíola Soares Moreira Campos ◽

Leda Marques Ribeiro ◽

Ivanildo Archangelo Junior ◽

Joel Veiga Filho ◽

...

Keyword(s):

Breast Cancer ◽

Quality Of Life ◽

Physical Functioning ◽

Negative Impact ◽

Young Patients ◽

Conservative Surgery ◽

Sf 36 ◽

Significant Difference ◽

The Impact

OBJECTIVES: to compare the impact of mastectomy and conservative surgery on the quality of life of patients with breast cancer. METHODS: an assessment was made of the quality of life of patients undergoing mastectomy or segmentary mastectomy, at the Pouso Alegre Clinical Hospital, in the Brazilian State of Minas Gerais, using SF-36. The patients were grouped by age (<50 years and >50 years) and years of schooling (<8 years and >8 years). The Mann-Whitney test was used to compare the groups with regard to the age and schooling domains of SF-36. RESULTS: a significant difference between the two groups was found in the domains of "physical functioning" (p=0.04) and "pain" (p=0.01): with the patients undergoing a mastectomy registering the worst scores. Young patients who had undergone a mastectomy displayed the worst quality of life in terms of "physical functioning" (p=0.03), "pain" (p=0.01) and "social functioning" (p=0.01); those undergoing conservative surgery aged over 50 years scored worst on "role emotional" (p=0.05). Patients undergoing a mastectomy with lower levels of schooling scored lower in "physical functioning" (p=0.01), "role physical" (p=0.05) and "pain" (p=0.05). Among those who had attended school for more than eight years, those having undergone a mastectomy scored less in the "pain" domain (p=0.04). CONCLUSIONS: patients who had undergone a mastectomy had worse results in the physical component of the evaluation of quality of life and this negative impact was more strongly felt among younger patients and those with lower levels of schooling.

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