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The impact of severe rare chronic neurological disease in childhood on the quality of life of families—a study on MLD and PCH2

机译：严重稀有慢性神经疾病在童年中对家庭生活质量的影响 - MLD和PCH2的研究

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摘要

Classification of disease type families and affected children

机译：疾病类型家庭和受影响儿童的分类

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期刊名称 Orphanet Journal of Rare Diseases
作者
Louisa Ammann-Schnell; Samuel Groeschel; Christiane Kehrer; Saskia Frölich; Ingeborg Krägeloh-Mann;
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作者单位

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年(卷),期 2021(-1),-1
年度 2021
页码 -1
总页数 16
原文格式 PDF
正文语种
中图分类医学史;
关键词
Disease burden; Metachromatic leukodystrophy; Pontocerebellar hypoplasia type 2; Parents; Quality of life;

机译：疾病负担;成种性白细胞萎缩;蓬皮甲虫发育不全类型2;父母;生活质量;

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1. The effect of neuropalliative care on quality of life and satisfaction with quality of care in patients with progressive neurological disease and their family caregivers: an interventional control study [J] . Radka Bu?gová, Radka Kozáková, Michal Bar BMC Palliative Care . 2020,第1期

机译：神经基础护理对患有渐进神经疾病和家庭护理人员患者的生活质量和满意度的影响：介入控制研究
2. Physical therapy and chiropractic use among childhood cancer survivors with chronic disease: impact on health-related quality of life [J] . Michele Montgomery, Sujuan Huang, Cheryl L. Cox, Journal of Cancer Survivorship . 2011,第1期

机译：在患有慢性疾病的儿童癌症幸存者中进行物理治疗和整脊疗法：对健康相关生活质量的影响
3. Physical therapy and chiropractic use among childhood cancer survivors with chronic disease: impact on health-related quality of life. [J] . Montgomery M, Huang S, Cox CL, Journal of cancer survivorship: research and practice . 2011,第1期

机译：具有慢性病儿童癌幸存者的物理治疗和脊椎按摩疗法：对与健康有关的生活质量的影响。
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. Maternal prepregnancy nutritional status as a key link of intergenerational risk of obesity and chronic disease in childhood and later life among US Pacific Islanders: A life course approach study. [D] . Techur-Pedro, Angela. 2015

机译：孕产妇的营养状况是美国太平洋岛民中儿童及以后生活中肥胖和慢性病的代际风险的关键链接：一项生命历程方法研究。
6. The effect of neuropalliative care on quality of life and satisfaction with quality of care in patients with progressive neurological disease and their family caregivers: an interventional control study [O] . Radka Bužgová, Radka Kozáková, Michal Bar 2020

机译：神经基础护理对患有渐进神经疾病和家庭护理人员患者的生活质量和满意度的影响：介入控制研究
7. The impact of severe rare chronic neurological disease in childhood on the quality of life of families—a study on MLD and PCH2 [O] . Louisa Ammann-Schnell, Samuel Groeschel, Christiane Kehrer, 2021

机译：严重稀有慢性神经疾病在童年中对家庭生活质量的影响 - MLD和PCH2的研究
8. Family Structure and Childhood Obesity, Early Childhood Longitudinal Study-Kindergarten Cohort: Preventing Chronic Disease, Public Health Research, Practice, and Policy, Vol 7., No 3 [R] . Chen, A. Y., Escarce, J. J. 2010

机译：家庭结构和儿童肥胖，早期儿童纵向研究 - 幼儿园队列：预防慢性病，公共卫生研究，实践和政策，第7卷，第3期

The impact of severe rare chronic neurological disease in childhood on the quality of life of families—a study on MLD and PCH2

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