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

Abstract

Background: 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.

Methods: 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.

Results: 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.

Conclusion: 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.

Keywords: Asia; Healthcare professionals; Quality of life; Sickle cell disease.

Fig. 1

a Impact of SCD on younger patients’ (aged under 18) lives. b Impact of SCD on adult patients’ (aged above 18) lives. Impact of SCD on patients, by age. Figures show % of HCPs selecting ‘to some extent’ or ‘to a great extent’. *Small base size

Fig. 2

HCPs’ attitudes to SCD patient management. Figures show % of HCPs selecting ‘somewhat agree’ or ‘strongly agree

Fig. 3

Proportion of patients with SCD on treatments (mean %)

Fig. 4

a Attitude towards overall treatment. b Attitudes to personal treatment approach of SCD. HCP attitudes to treatment approach. Figures show % of HCPs selecting ‘somewhat agree’ or ‘strongly agree’

Fig. 5

Main reasons patients with SCD refuse treatment. Figures show % of HCPs ranking statements 1–3 and Rank 1

Fig. 6

HCP Knowledge and perceptions of SCD management. Figures show % of HCPs selecting ‘somewhat agree’ or ‘strongly agree’

Fig. 7

HCP Knowledge of the consequences of haemolytic anaemia and haemolysis (%)

Fig. 8

HCPs’ top five concerns for patients with SCD (%)