Sickle Cell Health Awareness, Perspectives, and Experiences (SHAPE) survey: Perspectives of adolescent and adult patients, caregivers, and healthcare professionals on the burden of sickle cell disease

被引：2

作者：

de Montalembert, Mariane ^{[1
]}

Anderson, Alan ^{[2
]}

Costa, Fernando F. ^{[3
]}

Inusa, Baba P. D. ^{[4
]}

Jastaniah, Wasil ^{[5
]}

Kunz, Joachim B. ^{[6
]}

Tinga, Biba ^{[7
]}

Ingoli, Elvie ^{[8
]}

James, John ^{[9
]}

Hartfield, Regina ^{[10
]}

Beaubrun, Anne ^{[11
]}

Lartey, Belinda ^{[12
]}

Odame, Isaac ^{[13
]}

机构：

[1] Univ Paris Cite, Necker Enfants Malad Hosp, Assistance Publ Hop Paris AP HP, Sickle Cell Ctr,Dept Gen Pediat & Pediat Infectiou, Paris, France

[2] Univ South Carolina, Dept Pediat Hematol Oncol, PRISMA Hlth Comprehens SCD Program, Sch Med, Greenville, SC USA

[3] Univ Campinas UNICAMP, Haematol & Haemotherapy Ctr, Sch Med, Campinas, SP, Brazil

[4] Guys & St Thomas NHS Fdn Trust, Evelina London Childrens Hosp, Dept Paediat Haematol, London, England

[5] King Faisal Specialist Hosp & Res Ctr, Dept Pediat Oncol Hematol Bone Marrow Transplant, Jeddah, Saudi Arabia

[6] Heidelberg Univ, Hopp Childrens Canc Ctr Heidelberg KiTZ, Dept Pediat Oncol Hematol & Immunol, Heidelberg, Germany

[7] Sickle Cell Dis Assoc Canada, Toronto, ON, Canada

[8] German Sickle Cell Dis & Thalassaemia Assoc, IST eV, Eschweiler, Germany

[9] Sickle Cell Soc, London, England

[10] Sickle Cell Dis Assoc Amer Inc, Hanover, MD USA

[11] Pfizer Inc, New York, NY USA

[12] Ipsos Healthcare, London, England

[13] Hosp Sick Children, Div Hematol Oncol, 555 Univ Ave, Toronto M5G 1X8, ON, Canada

来源：

EUROPEAN JOURNAL OF HAEMATOLOGY | 2024年 / 113卷 / 02期

关键词：

anemia; caregivers; health personnel; patients; quality of life; sickle cell; QUALITY-OF-LIFE; AMERICAN SOCIETY; GUIDELINES; TRANSFUSION; PREVENTION; MANAGEMENT; CHILDREN; FATIGUE;

D O I：

10.1111/ejh.14211

中图分类号：

R5 [内科学];

学科分类号：

1002 ; 100201 ;

摘要：

Objectives: Sickle cell disease (SCD) is an inherited disorder that causes lifelong complications, substantially impacting the physical and emotional well-being of patients and their caregivers. Studies investigating the effects of SCD on quality of life (QOL) are often limited to individual countries, lack SCD-specific QOL questionnaires, and exclude the caregiver experience. The SHAPE survey aimed to broaden the understanding of the global burden of SCD on patients and their caregivers and to capture the viewpoint of healthcare providers (HCPs). Methods: A total of 919 patients, 207 caregivers, and 219 HCPs from 10, 9, and 8 countries, respectively, answered a series of closed-ended questions about their experiences with SCD. Results: The symptoms most frequently reported by patients were fatigue/tiredness (84%) and pain/vaso-occlusive crises (71%). Patients' fatigue/tiredness had one of the greatest impacts on both patients' and caregivers' QOL. On average, patients and caregivers reported missing 7.5 days and 5.0 days per month, respectively, of school or work. HCPs reported a need for effective tools to treat fatigue/tiredness and a desire for more support to educate patients on long-term SCD-related health risks. Conclusions: The multifaceted challenges identified using the SHAPE survey highlight the global need to improve both patient and caregiver QOL.

引用

页码：172 / 182

页数：11

共 46 条

[1]

Abboud Miguel R, 2020, Hematol Oncol Stem Cell Ther, V13, P85, DOI 10.1016/j.hemonc.2019.12.007

[2] Depression, quality of life, and medical resource utilization in sickle cell disease [J].