日期 影响因子
日期:
2020 年 — 2026 年
2020
2021
2022
2023
2024
2025
2026
影响因子:
–

Quality of life in people with syndromic heritable thoracic aortic disease and their relatives: a qualitative interview based study

患有综合征性遗传性胸主动脉疾病及其亲属的生活质量：一项基于定性访谈的研究

期刊:Orphanet Journal of Rare Diseases
影响因子:3.5
doi:10.1186/s13023-024-03485-3
Velvin, Gry; Johansen, Heidi; Aune, Gunnbjørg; Fugl-Meyer, Kerstin; Geirdal, Amy Østertun
发表日期：2025
文献求助 收藏

Exploring patient experiences of pain fatigue and physical activity in syndromic heritable thoracic aortic disease using mixed methods

采用混合方法探索综合征型遗传性胸主动脉疾病患者的疼痛、疲劳和身体活动体验

期刊:Scientific Reports
影响因子:
doi:10.1038/s41598-025-16184-1
Velvin, Gry; Johansen, Heidi; Bostrøm, Katrine
发表日期：2025
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A scoping review of health literacy in rare disorders: key issues and research directions

罕见病健康素养的范围界定综述：关键问题和研究方向

期刊:Orphanet Journal of Rare Diseases
影响因子:3.5
doi:10.1186/s13023-024-03332-5
Stenberg, Una; Westfal, Lydia; Dybesland Rosenberger, Andreas; Ørstavik, Kristin; Flink, Maria; Holmen, Heidi; Systad, Silje; Westermann, Karl Fredrik; Velvin, Gry
发表日期：2024
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Work participation in adults with rare genetic diseases - a scoping review

患有罕见遗传疾病的成年人的工作参与情况——一项范围界定综述

期刊:BMC Public Health
影响因子:3.6
doi:10.1186/s12889-023-15654-3
Velvin, Gry; Dammann, Brede; Haagensen, Trond; Johansen, Heidi; Strømme, Hilde; Geirdal, Amy Østertun; Bathen, Trine
发表日期：2023
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Fatigue in patients with syndromic heritable thoracic aortic disease: a systematic review of the literature and a qualitative study of patients' experiences and perceptions

综合征型遗传性胸主动脉疾病患者的疲劳：文献系统综述及患者体验和感受的定性研究

期刊:Orphanet Journal of Rare Diseases
影响因子:3.5
doi:10.1186/s13023-023-02709-2
Velvin, Gry; Johansen, Heidi; Østertun-Geirdal, Amy; Bathen, Trine
发表日期：2023
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Parental Intervention Program for Preschool children with Rare Diseases - a mixed methods evaluation of parents' experiences and utility

针对患有罕见病的学龄前儿童的家长干预项目——一项关于家长经验和效用的混合方法评估

期刊:Orphanet Journal of Rare Diseases
影响因子:3.5
doi:10.1186/s13023-023-02935-8
Velvin, Gry; Johnsen, Vigdis; Lidal, Ingeborg Beate; Berg, Ellen
发表日期：2023
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Patient involvement in rare diseases research: a scoping review of the literature and mixed method evaluation of Norwegian researchers' experiences and perceptions

患者参与罕见病研究：文献范围综述及挪威研究人员经验和看法的混合方法评估

期刊:Orphanet Journal of Rare Diseases
影响因子:3.5
doi:10.1186/s13023-022-02357-y
Velvin, Gry; Hartman, Thale; Bathen, Trine
发表日期：2022
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Experienced fatigue in people with rare disorders: a scoping review on characteristics of existing research

罕见病患者疲劳体验：现有研究特征的范围综述

期刊:Orphanet Journal of Rare Diseases
影响因子:3.5
doi:10.1186/s13023-021-02169-6
Bathen, Trine; Johansen, Heidi; Strømme, Hilde; Velvin, Gry
发表日期：2022
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Education and employment status among adults with Loeys-Dietz syndrome and vascular Ehlers-Danlos syndrome in Norway, a questionnaire based study

挪威患有洛伊斯-迪茨综合征和血管型埃勒斯-当洛斯综合征的成年人的教育和就业状况：一项基于问卷调查的研究

期刊:PLoS One
影响因子:2.6
doi:10.1371/journal.pone.0279848
Johansen, Heidi; Velvin, Gry; Lidal, Ingeborg B
发表日期：2022
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Adults with Loeys-Dietz syndrome and vascular Ehlers-Danlos syndrome: A cross-sectional study of life satisfaction

患有洛伊斯-迪茨综合征和血管型埃勒斯-当洛斯综合征的成年人：一项关于生活满意度的横断面研究

期刊:Journal of Rehabilitation Medicine
影响因子:2.3
doi:10.2340/jrm.v53.572
Johansen, Heidi; Velvin, Gry; Fugl-Meyer, Kerstin; Lidal, Ingeborg Beate
发表日期：2021
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