ArticleOrphanet journal of rare diseases2025
Sickle cell health awareness, perspectives and experiences (SHAPE) survey: perspectives on sickle cell disease (SCD) from healthcare providers in India, Malaysia, and Thailand.
Article in Orphanet journal of rare diseases, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
0 citing papers in PubMed.
No citing paper in PubMed yet.
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
2 authors.
Funding
Abstract
backgroundSickle 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.
methodsThe 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.
resultsThe 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.
conclusionThere 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.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.