Sickle Cell Health Awareness, Perspectives and Experiences (SHAPE) survey developed with international steering committee of medical experts and patient advocates
One of the largest global burden of disease surveys conducted in SCD, SHAPE identified long-term health complications of SCD as a key concern among patients and HCPs. The survey also revealed that SCD patient caregivers face profound physical, psychosocial, and economic burdens resulting from taking care of people living with the disease.1,2
“Sickle cell disease is a lifelong condition that causes damage in the body and has a profound impact on the quality of life of those who suffer from it and their caregivers. The SHAPE survey is important because it illustrates how vital it is that we understand our patients’ needs, and it suggests what we within the medical community can do to help change perspectives, increase education and awareness, and improve care,” said Dr.
SHAPE Survey HCP Results
The findings from the HCP portion of the survey were presented during a poster presentation on
- Despite fatigue/tiredness being identified as having the biggest impact on patients’ lives (84%), only half (53%) of HCPs felt they have effective tools to treat this symptom.
- Most HCPs (84%) believed that treating hemolytic anemia (low hemoglobin due to red blood cell destruction) can improve most aspects of SCD, including reducing organ damage.
- Most HCPs (78%) felt confident in their knowledge of the long-term effects of SCD, but 83% wanted more support in educating their patients on this topic.
- Nearly one third (31%) of HCPs found it challenging to understand patients’ concerns, with 43% citing difficulties due to having different ethnic background from their patients.
- Two-thirds (66%) of HCPs felt that patients do not always understand the long-term effects of SCD, and more than one third (37%) were reluctant to raise potential future challenges or complications with a patient or their family.
- Most HCPs (82%) agreed that SCD causes financial difficulties for patients, which may consequently affect their access to care.
SHAPE Survey Patient and Caregiver Results
The findings from patients and caregivers highlight that the realities of SCD for both patients and caregivers extend beyond the significant pain often experienced by patients and comprise a broad, lifelong series of physical, emotional and social barriers.
“SCD is the reality of so many people around the world, and yet patients often experience poor care, especially by non-specialist healthcare providers who may lack the training to provide good comprehensive care. In recent years, we’ve started to see some positive change, but it is still not enough. The challenges for patients seem endless and this survey highlights that, in spite of this, patients do not feel heard. They continue to face acute physical but also emotional damage, stigma and discrimination.” said Dianaba Ba, who lives with SCD and is director of operations, SOS GLOBI:
Results from the patient and caregiver portions of the survey, which will be featured in an oral presentation on
- Most patients (93%) agreed that reducing their risk of long-term health issues due to SCD, such as organ damage, was important to them.
- Fatigue/tiredness was a symptom experienced by most patients (84%) in the past year, which also had the greatest negative impact on their ability to attend and be successful at school or work, and, thereby, on their earning potential.
- Patients reported that due to SCD they missed an average of 7.5 days of school/work in the past month.
- Mental health symptoms affected the majority of patients with SCD in the past year, including 62% who reported feeling depressed, low mood or down, and 57% who indicated they felt worry or nervousness.
- Patients reported more positive experiences with specialist HCPs as compared with emergency departments and general HCPs.
- More than half (54%) of SCD patients reported they believe they had experienced poor care in the past from emergency medicine professionals due to such providers’ lack of knowledge about SCD.
- Over half of caregivers reported that patient symptoms negatively impact their own lives, such as their career and education (56%), long-term health prospects (55%) and overall well-being (53%).
“Our aim for this survey is to add to the body of knowledge around better understanding and characterizing the misunderstood, under-reported experiences and unmet needs of people living with SCD, as well as those caring for and treating people with the condition,” said
Members of the SHAPE survey
Alan Anderson , M.D.,University of South Carolina School of Medicine Greenville ; Comprehensive Sickle Cell Program,Prisma-Health Upstate ,Greenville, SC , USAAshley Clark ,Sickle Cell Association of America (SCDAA) (formerly)Baba Inusa , M.D., Paediatric Haematology,Evelina Children's Hospital ,Guy's and St Thomas' Hospital,London, United Kingdom Biba Tinga ,Sickle Cell Disease Association of Canada - Dianaba Ba, SOS GLOBI:
The Federation of Sickle Cell and Thalassemic Patients ,France ; sickle cell patient - Elvie Ingoli,
German Sickle Cell Disease and Thalassaemia Association Fernando Ferreira Costa , M.D., Ph.D., Haematology and Haemotherapy Centre, School of Medicine,University of Campinas - UNICAMP,Campinas ,São Paulo, Brazil - Isaac Odame, MB, ChB,
Department of Hematology/Oncology ,The Hospital for Sick Children ,Toronto, Canada Joachim B. Kunz , M.D.,Department of Pediatric Oncology, Hematology and Immunology , Hopp Children’s Cancer Center (KiTZ) Heidelberg,University of Heidelberg ,Heidelberg ,Germany - John James, OBE,
Sickle Cell Society ,London, UK Mariane de Montalembert , M.D., Hôpital universitaire Necker-Enfants maladies,Paris, France Wasil Jastaniah , MBBS,King Faisal Specialist Hospital & Research Center ,Jeddah ,Kingdom of Saudi Arabia Zakareya Al Kadhem ,Bahrain Society for Sickle Cell Anaemia Patient Care
About the SHAPE Survey
Commissioned by GBT, the SHAPE survey was conducted by
For more information on the SHAPE survey visit https://www.gbt.com/shape.
About Sickle Cell Disease
Sickle cell disease (SCD) affects more than 100,000 people in the
About Global Blood Therapeutics
Forward-Looking Statements
Certain statements in this press release are forward-looking within the meaning of the Private Securities Litigation Reform Act of 1995, including statements containing the words “will,” “anticipates,” “plans,” “believes,” “forecast,” “estimates,” “expects” and “intends,” or similar expressions. These forward-looking statements are based on GBT’s current expectations and actual results could differ materially. Statements in this press release may include statements that are not historical facts and are considered forward-looking within the meaning of Section 27A of the Securities Act of 1933, as amended, and Section 21E of the Securities Exchange Act of 1934, as amended. GBT intends these forward-looking statements, including statements regarding GBT’s priorities, dedication, commitment, focus, goals, mission, vision and positioning; safety, efficacy and mechanism of action of Oxbryta and other product characteristics; significance of the SHAPE survey and related findings and possible future activities; commercialization, delivery, availability, use and commercial and medical potential of Oxbryta; impacting the treatment, course and care of SCD; safety, efficacy, mechanism of action, advancement and potential of GBT’s drug candidates and pipeline; and working on new targets and discovering, developing and delivering treatments, to be covered by the safe harbor provisions for forward-looking statements contained in Section 27A of the Securities Act and Section 21E of the Securities Exchange Act, and GBT makes this statement for purposes of complying with those safe harbor provisions. These forward-looking statements reflect GBT’s current views about its plans, intentions, expectations, strategies and prospects, which are based on the information currently available to the company and on assumptions the company has made. GBT can give no assurance that the plans, intentions, expectations or strategies will be attained or achieved, and, furthermore, actual results may differ materially from those described in the forward-looking statements and will be affected by a variety of risks and factors that are beyond GBT’s control, including, without limitation, risks and uncertainties relating to the COVID-19 pandemic, including the extent and duration of the impact on GBT’s business, including commercialization activities, regulatory efforts, research and development, corporate development activities and operating results, which will depend on future developments that are highly uncertain and cannot be accurately predicted, such as the ultimate duration of the pandemic, travel restrictions, quarantines, social distancing and business closure requirements in the U.S. and in other countries, and the effectiveness of actions taken globally to contain and treat the disease; the risks that GBT is continuing to establish its commercialization capabilities and may not be able to successfully commercialize Oxbryta; risks associated with GBT’s dependence on third parties for research, development, manufacture, distribution and commercialization activities; government and third-party payer actions, including those relating to reimbursement and pricing; risks and uncertainties relating to competitive treatments and other changes that may limit demand for Oxbryta; the risks regulatory authorities may require additional studies or data to support continued commercialization of Oxbryta; the risks that drug-related adverse events may be observed during commercialization or clinical development; data and results may not meet regulatory requirements or otherwise be sufficient for further development, regulatory review or approval; compliance with obligations under the Pharmakon loan; and the timing and progress of activities under GBT’s collaboration, license and distribution agreements; along with those risks set forth in GBT’s Annual Report on Form 10-K for the fiscal year ended December 31, 2021, and in GBT’s most recent Quarterly Report on Form 10-Q filed with the U.S. Securities and Exchange Commission, as well as discussions of potential risks, uncertainties and other important factors in GBT’s subsequent filings with the U.S. Securities and Exchange Commission. Except as required by law, GBT assumes no obligation to update publicly any forward-looking statements, whether as a result of new information, future events or otherwise.
Contact:
Steven Immergut (media)
+1 650 410 3258
simmergut@gbt.com
Claudia Nabaie (media
+41 79 906 5814
cnabaie@gbt.com
+1 650-351-7881
croberts@gbt.com
References
- De Montalembert. M et al. Sickle Cell Health Awareness,
Perspectives and Experiences (SHAPE) Survey : Findings on the Burden of Sickle Disease on Patients and Their Unmet Needs As Reported by Healthcare Professionals. Presented at theEuropean Hematology Association 2022Hybrid Congress ;June 9-12, 2022 ,Vienna, Austria , and Virtual. - Odama I et al. Sickle Cell Health Awareness,
Perspectives and Experiences (SHAPE) Survey : Findings on the Burden of Sickle Cell Disease an Unmet Needs as Reported by Patients and Caregivers. To be presented at the 4thGlobal Congress on Sickle Cell Disease ;June 16-18, 2022 ,Paris , France. Centers for Disease Control and Prevention website.Sickle Cell Disease Research . https://www.cdc.gov/ncbddd/hemoglobinopathies/scdc-understanding-sickle-cell-disease.html. Last accessed June 2022.European Medicines Agency . https://www.ema.europa.eu/en/medicines/human/orphan-designations/eu3182125. Last accessed June 2022.- Ministério da Saúde (Brasil), Protocolo Clínico e Diretrizes Terapêuticas da Doença Falciforme,
Feb. 19, 2018 Centers for Disease Control and Prevention website. Sickle Cell Disease (SCD). https://www.cdc.gov/ncbddd/sicklecell/data.html. Last accessed June 2022.- National Heart, Lung, and Blood Institute website. Sickle Cell Disease. https://www.nhlbi.nih.gov/health-topics/sickle-cell-disease. Last accessed June 2022.
- Kato GJ et al. Nat Rev Dis Primers. 2018;4:18010
- Rees DC, et al.
Lancet . 2010;376(9757):2018-2031. - Kato GJ et al. J Clin Invest. 2017;127:750-760
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- Kanter J, et al. Blood Rev. 2013 Nov;27(6):279-87.
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