Contributions
Abstract: PB2150
Type: Publication Only
Background
Sickle cell anemia (SCA) is a genetic disease causing a severe disease manifesting by painful crisis but which can also be marked by organ complications. Mortality is still happening at a young age. Many of these complications may be better taken care of if treated early. The best way to manage this disease is probably through Patient Education (PE)
Aims
Patient Education for children with sickle cell anemia has been a subject of research, organized in France by association such as ROFSED, but PE in adult patients has been little studied. The main objective of this work was to evaluate SCA patients followed in Haute-Normandie, from a sociodemographic, health and socio-demographic perspective in order to establish a PE program. The secondary objective was to give them the opportunity to express their expectations of such a program.
Methods
We did an observational multicenter study. A self-questionnaire of 39 items was sent to all patients suffering from SCA followed in Haute-Normandie.
Results
Fifty patients (male / female ratio 0.92) out of 123 (40.6%) responded, mean age 33 ± 10.5 years (SS genotypes [66%], SC[25%], S-beta-thalassemia [9%]). 56% of them were born outside of Metropolitan France, 36% came from French speaking African countries.
Aerage age was 18 ± 10.9 years. Despite the fact that their education has been disrupted by the disease for the majority (69.4%), the level of education was “satisfactory”: 68% of patients had graduated from high school or achieved a higher level, 18% had graduated from professional education, 10% had a primary / middle school level and 4% were illiterate. 68% of the patients had a job or were students. 48% of patients reported to practice physical activity at least once weekly. Tobacco was consumed on a daily basis by 14%, alcohol 2% and 4% for cannabis. Self-assessment of health status was 6.9 / 10, self-assessment of morale of 7.9 / 10 and impact of the disease on daily life was estimated at 5.4 / 10. The mean age at at which specialized follow-up was started was 11 ± 9 years. 88% of the subjects stated that they understood everything the doctor said during consultation. Missed appointments were reported by 26% which was justified by forgetfulness, lack of will or physical incapacity. Regarding sources of information regarding SCA, patients declared asking their specialist first and then looking on the internet. 68% of subjects had a first-degree relative suffering from the same disease, 71% were able to talk about the disease with their family.
While the triggers of crises and the management of crises were well-identified by patients (average scores of 13.8 and 12/20), “standards” were not met with chronic complications, prenatal diagnosis, and long term treatment (mean scores respectively of 7.4; 4.2 and 2.2 / 20). Average score on the whole questionnaire was 9/20. Most patients showed interested in PE (52.1%) vs. 31.3% that claimed were not interested, 17.7% did not decide.
Conclusion
A majority of SCA adults followed in Haute-Normandie are first-generation migrants. Even if the disease has heavy impact on everyday life and school access, their education level appeared correct. PE sessions will need to focus on chronic complications, prenatal diagnosis, and the long term treatment.
to a heterogeneous population in terms of educational level, ethnic origin and knowledge of the disease.
Session topic: 25. Sickle cell disease
Keyword(s): Sickle cell patient, Health care
Abstract: PB2150
Type: Publication Only
Background
Sickle cell anemia (SCA) is a genetic disease causing a severe disease manifesting by painful crisis but which can also be marked by organ complications. Mortality is still happening at a young age. Many of these complications may be better taken care of if treated early. The best way to manage this disease is probably through Patient Education (PE)
Aims
Patient Education for children with sickle cell anemia has been a subject of research, organized in France by association such as ROFSED, but PE in adult patients has been little studied. The main objective of this work was to evaluate SCA patients followed in Haute-Normandie, from a sociodemographic, health and socio-demographic perspective in order to establish a PE program. The secondary objective was to give them the opportunity to express their expectations of such a program.
Methods
We did an observational multicenter study. A self-questionnaire of 39 items was sent to all patients suffering from SCA followed in Haute-Normandie.
Results
Fifty patients (male / female ratio 0.92) out of 123 (40.6%) responded, mean age 33 ± 10.5 years (SS genotypes [66%], SC[25%], S-beta-thalassemia [9%]). 56% of them were born outside of Metropolitan France, 36% came from French speaking African countries.
Aerage age was 18 ± 10.9 years. Despite the fact that their education has been disrupted by the disease for the majority (69.4%), the level of education was “satisfactory”: 68% of patients had graduated from high school or achieved a higher level, 18% had graduated from professional education, 10% had a primary / middle school level and 4% were illiterate. 68% of the patients had a job or were students. 48% of patients reported to practice physical activity at least once weekly. Tobacco was consumed on a daily basis by 14%, alcohol 2% and 4% for cannabis. Self-assessment of health status was 6.9 / 10, self-assessment of morale of 7.9 / 10 and impact of the disease on daily life was estimated at 5.4 / 10. The mean age at at which specialized follow-up was started was 11 ± 9 years. 88% of the subjects stated that they understood everything the doctor said during consultation. Missed appointments were reported by 26% which was justified by forgetfulness, lack of will or physical incapacity. Regarding sources of information regarding SCA, patients declared asking their specialist first and then looking on the internet. 68% of subjects had a first-degree relative suffering from the same disease, 71% were able to talk about the disease with their family.
While the triggers of crises and the management of crises were well-identified by patients (average scores of 13.8 and 12/20), “standards” were not met with chronic complications, prenatal diagnosis, and long term treatment (mean scores respectively of 7.4; 4.2 and 2.2 / 20). Average score on the whole questionnaire was 9/20. Most patients showed interested in PE (52.1%) vs. 31.3% that claimed were not interested, 17.7% did not decide.
Conclusion
A majority of SCA adults followed in Haute-Normandie are first-generation migrants. Even if the disease has heavy impact on everyday life and school access, their education level appeared correct. PE sessions will need to focus on chronic complications, prenatal diagnosis, and the long term treatment.
to a heterogeneous population in terms of educational level, ethnic origin and knowledge of the disease.
Session topic: 25. Sickle cell disease
Keyword(s): Sickle cell patient, Health care