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The Truth about Sickle Cell Disease:

Findings from the SHAPE Survey

Sickle Cell Health, Awareness, Perspectives and Experiences Survey

  • Gathers insights from patients, caregivers and healthcare professionals (HCPs) in 10 countries
  • Highlights the quality of life (QoL) challenges and inequities faced by the sickle cell disease (SCD) community
  • Developed with SCD experts including advocates (patients and caregivers) and HCPs
SHAPE is a multinational survey aimed at better understanding the experiences and unmet needs of people living with, caring for and treating individuals with Sickle Cell Disease to provide a comprehensive picture of its impact.

In total 1,345 people participated in the SHAPE survey, across 10 countries:

919

people living with SCD ages 12 and older

207

caregivers

219

HCPs

Results

The survey explored the broader and longer-term implications and outcomes of SCD including:

SCD goes beyond the physical: understanding the impact of SCD on quality of life

Mental Health

symptoms such as low mood or feeling down affect almost two thirds (62%) of people living with SCD and more than half (57%) experience worry and anxiousness.

More than half

of those surveyed who look after someone with SCD stated their ability to attend and succeed at work/school (56%), long-term health (55%), earning potential (54%), overall wellbeing (53%) and mental health (52%) are impacted.

Fatigue

is the most common physical symptom of SCD experienced by 84% of SHAPE survey patient participants in the past year.

Overcoming inequities in SCD: need for improved awareness and education

More than half

(54%) of people with SCD, reported that they have experienced poor care in the past from emergency room professionals due to a lack of knowledge about SCD.

Over a third

(38%) of patients believe they received poor treatment from emergency medicine professionals because of their ethnicity or socio-economic background.

Over three quarters

of patients (77%) and caregivers (81%) feel that SCD continues to be overlooked by society and is not seen to be as important as other conditions.

The power of partnership: the importance of a positive doctor-patient relationship

78%

of patients reported they are interested in trying new treatments for SCD.

Over half

of HCPs (53%) say it’s difficult to get patients to try different treatments, highlighting a disconnect between patient and HCP perceptions around new therapies.

83%

of patients trusted specialist doctors more than other HCPs to offer new treatments, and 75% felt specialist doctors addressed the long term impacts of SCD.

Improving future outcomes in SCD: effective long-term management

Nearly All

patients (93%) feel it is important to reduce the risk of long-term health complications such as organ damage. Yet, patients’ perceived lack of understanding around the long-term effects of SCD is still a top concern for many HCPs (40%) and two thirds (66%) believe their patients don’t always understand the long-term effects of their SCD highlighting a disconnect between patient and HCP perceptions around long-term impact of SCD.

Over three quarters

(83%) of HCPs would like more support to educate their patients about the long-term effects of SCD and only half (50%) feel they have sufficient tools to manage this long-term damage.

Latest News

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June 13, 2022

GBT multinational sickle cell disease survey highlights the impact on quality of life, health and race inequities and the need for better management and care

Download the press release

Resources

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Press Release

SHAPE Survey Launch Press Release

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Poster

EHA SHAPE HCP Data Poster

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Presentation

GCSCD SHAPE Data Presentation

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Fact Sheet

About SHAPE Fact Sheet

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