Effect of Angiofibromas on Quality of Life and Access to Care in Tuberous Sclerosis Patients and Their Caregivers

Crall Cary; Valle Molly; Kapur Kush; Dies Kira A.; Liang Marilyn G.; Sahin Mustafa; Huang Jennifer T.

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Effect of Angiofibromas on Quality of Life and Access to Care in Tuberous Sclerosis Patients and Their Caregivers

机译：血管纤维瘤对结节性硬化症患者及其护理人员生活质量和就医机会的影响

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Background/ObjectivesFacial angiofibromas (AF) have the potential to cause disfigurement in children with tuberous sclerosis complex (TSC). Facial disfigurement can impact the quality of life (QoL) of individuals and their families, leading to negative psychosocial outcomes. QoL has not been studied in TSC patients with AF.

机译：背景/目的面部血管纤维瘤（AF）可能会导致结节性硬化症（TSC）儿童的容貌下降。面孔毁容会影响个人及其家庭的生活质量（QoL），导致负面的社会心理结果。尚未在TSC房颤患者中研究QoL。

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《Pediatric dermatology》 |2016年第5期|共8页
作者
Crall Cary; Valle Molly; Kapur Kush; Dies Kira A.; Liang Marilyn G.; Sahin Mustafa; Huang Jennifer T.;
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正文语种 eng
中图分类皮肤病学与性病学;
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1. Effect of Angiofibromas on Quality of Life and Access to Care in Tuberous Sclerosis Patients and Their Caregivers [J] . Crall Cary, Valle Molly, Kapur Kush, Pediatric dermatology . 2016,第5期

机译：血管纤维瘤对结节性硬化症患者及其护理人员生活质量和就医机会的影响
2. Caregivers of patients with amyotrophic lateral sclerosis: investigating quality of life, caregiver burden, service engagement, and patient survival [J] . Burke Tom, Galvin Miriam, Pinto-Grau Marta, Journal of neurology . 2017,第5期

机译：肌营养侧面硬化症患者的护理人员：调查生活质量，护理人员负担，服务订婚和患者生存
3. Experience of follow-up, quality of life, and transition from pediatric to adult healthcare of patients with tuberous sclerosis complex [J] . Bar Claire, Ghobeira Rouba, Azzi Rita, Epilepsy & behavior: E&B . 2019,第期

机译：随访，生活质量和从小儿患者患者的患者的患者的过渡经验
4. Burdens and Quality of Life of Chronic Disease Patients' Family Caregivers: A Systematic Review [C] . Jum Natosba, Zulian Effendy, Firnaliza Rizona, Sriwijaya International Conference on Public Health . 2020

机译：慢性病患者家庭护理人员的负担和生活质量：系统审查
5. Influence of heart failure caregiving on caregiver burden, caregiver health-related quality of life and patient hospitalizations. [D] . Saunders, Mitzi M. 2006

机译：心力衰竭护理对护理人员负担，护理人员健康相关生活质量和患者住院治疗的影响。
6. Improved health-related quality of life in patients treated with topical sirolimus for facial angiofibroma associated with tuberous sclerosis complex [O] . Takashi Hatano, Yuki Ohno, Yu Imai, 2020

机译：局部西罗莫司治疗与结节性硬化症相关的面部血管纤维瘤患者的健康相关生活质量得到改善
7. Improved health-related quality of life in patients treated with topical sirolimus for facial angiofibroma associated with tuberous sclerosis complex [O] . Takashi Hatano, Yuki Ohno, Yu Imai, 2020

机译：用局部血管纤维瘤治疗的患者治疗健康相关的生活质量，用于与结核硬化复合物相关的面部血管瘤

Effect of Angiofibromas on Quality of Life and Access to Care in Tuberous Sclerosis Patients and Their Caregivers

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