Surveys of health care professionals, patients, and caregivers explored unmet needs in sickle cell disease (SCD), as well as the significant impact the disease has on everyday life.
Health care professionals (HCPs) find it challenging to understand the needs of patients with sickle cell disease (SCD), highlighting a need for additional support for HCPs, according to a survey of unmet needs reported by more than 1300 patients, caregivers, and HCPs in 10 countries.
The findings from the HCP portion of the survey were presented as a poster at the European Hematology Association (EHA) 2022 Congress. The results of the patients and caregivers survey were part of an oral presentation at EHA2022.
The results were from the Sickle Cell Health Awareness, Perspectives and Experiences (SHAPE) survey conducted in Bahrain, Brazil, Canada, France, Germany, Oman, Saudi Arabia, United Arab Emirates, United Kingdom, and the United States.
A total of 219 HCPs participated in the survey and 31% said they found it challenging to understand the needs of patients. More than half (57%) said their patients regularly missed their appointments. There were cultural challenges with 43% of respondents attributing difficulties to having different ethnic/national backgrounds from patients.
Among the HCPs, 48% were hematologists, 37% were hematologist/oncologists, 11% were pediatric hematologists, 1% were internists, 1% were pediatricians, and less than 1% were general/family practitioners. Patients reported in their survey that they had more positive experiences with specialist HCPs vs general HCPs.
“SCD is the reality of so many people around the world, and yet patients often experience poor care, especially by non-specialist health care providers who may lack the training to provide good comprehensive care,” Dianaba Ba said in a statement. Ba is a patient with SCD and is director of operations of SOS GLOBI: The Federation of Sickle Cell and Thalassemic Patients, an SCD patient advocacy organization in France. “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.”
The HCPs believed their patients were most impacted by fatigue/tiredness, and patients/caregivers agreed with 84% identifying it as the symptom they experienced most in the past year and the symptoms that had the greatest negative impact on their ability to attend school or work and be successful. According to patients, they missed an average of 7.5 days of school/work in the past month due to their SCD.
“Although fatigue/tiredness has one of the biggest impacts on patients’ lives, only half (53%) of HCPs felt they have effective tools to treat this symptom,” the authors wrote.
A majority of patients also reported feeling depressed, having a low mood, or down (62%) or feeling worried or nervous (57%) in the last year. HCPs were more likely to believe SCD greatly impacted patients’ mental health for patients 18 years or older (55%) compared with patients younger than 18 years (45%).
Finally, HCPs acknowledged the financial burden of SCD on patients with 82% saying the disease causes financial difficulties, and 64% reported they consider cost factors when recommending a treatment.
HCPs noted patient education remains an issue. While 78% were confident in their own knowledge of the long-term effects of SCD, 83% said they needed more support to educate their patients on this. In addition, 66% said their patients do not always understand the long-term effects of the disease, but 37% admitted they were reluctant to raise potential future challenges or complications.
More than 60% of HCPs said SCD greatly impacts the overall well-being of their patients and that it impacted their long-term health prospects. In the patient/caregiver study, caregivers said patient symptoms negatively impacted their own career and education (56%), long-term health prospects (55%), and overall well-being (53%).
“These findings highlight the complex environment that HCPs face when treating patients with SCD, including differences in socioeconomic status and ethnic background, the need for education, and a lack of resources,” the researchers concluded.
De Montalembert M, Anderson A, Costa F, et al. Sickle Cell Health Awareness, Perspectives and Experiences (SHAPE) survey: findings on the burden of sickle cell disease on patients and their unmet needs as reported by healthcare professionals. Presented at: EHA2022 Congress; June 9-12, 2022; Vienna, Austria. Poster P1487.