# Sickle cell health awareness, perspectives and experiences (SHAPE) survey: perspectives on sickle cell disease (SCD) from healthcare providers in India, Malaysia, and Thailand

## TL;DR

This survey explores healthcare providers' perspectives on sickle cell disease in India, Malaysia, and Thailand, highlighting treatment challenges and the financial burden on patients.

## Contribution

The study expands the SHAPE survey to Southeast Asia, revealing region-specific insights into SCD management and unmet needs.

## Key findings

- Fatigue and vaso-occlusive crisis pain are most commonly reported symptoms by patients.
- Hydroxyurea is the most commonly used treatment for SCD.
- Healthcare providers in India prioritize cost/benefit ratios when recommending treatments.

## Abstract

Sickle Cell Health Awareness, Perspectives and Experiences (SHAPE) Survey was previously developed for healthcare professionals, caregivers and patients from North America, Europe and Middle East. The current survey aims to broaden our understanding of the burden of Sickle Cell Disease (SCD), highlights the experiences of healthcare providers (HCPs) and identify unmet needs from Southeast Asia.

The survey was a cross-sectional quantitative study conducted by Ipsos UK on behalf of Pfizer. It involved a 12-minute online survey with HCPs from India, Malaysia, and Thailand if they were managing ≥ 3 patients with SCD for > 1 year. The survey covered aspects such as the impact of SCD on quality of life, treatment, and HCP knowledge and perceptions. The responses were collected either online or through face-to-face meetings.

The survey link was accessed by 205 HCPs across the three countries. Of these, 105 (51.2%) HCPs were found to be eligible. A total of 85 (80.9%) HCPs completed the survey. Fatigue/tiredness and vaso-occlusive crisis (VOCs) pain were the most commonly stated symptoms by the patients. HCPs believed that SCD impacts long-term health consequences, self-esteem, and mental health. Hydroxyurea was reported to be the most commonly used treatment. The Financial impact of SCD on patients was reported by 78% HCPs. More HCPs in India consider the cost/benefit ratio to the patient and healthcare system before recommending a treatment.

There is a need for greater recognition of the financial burden and impact on overall wellbeing of patients and their families. Surveyed HCPs are optimistic about using novel treatment options but need additional support for educating patients.

The online version contains supplementary material available at 10.1186/s13023-025-03765-6.