Abstract: EP1521
Type: e-Poster
Background
Sickle cell disease (SCD) is the most common genetic disease worldwide. Despite SCD being acknowledged as a national health priority since 2004, published epidemiological and disease burden data on SCD are limited in France.
Aims
Estimate SCD prevalence, complications incidence, and cost of care in the French setting.
Methods
A 1/97th random sample of the National Health Data System was used. This database includes all French beneficiaries except students and patients in the State Medical Assistance program. SCD patients were identified based on their reimbursement claims between 2006 and 2016 with two set of inclusion criteria:
- Group 1: An inpatient stay associated with a SCD diagnosis (ICD D570, D571 or D572 excluding D573 -sickle cell trait-), or chronic long-term disease status (ALD) for SCD, or a reimbursement for Siklos® or Hydrea® (excluding for Hydrea®, patients with ALD for haematologic cancer or above 30 yo).
- Group 2: At least two inpatient stays associated with SCD diagnosis, or ALD for SCD, or a reimbursement for Siklos® or Hydrea®. This group was selected to reduce the inclusion of miscoded SCD patients by including only the most symptomatic patient.
The incidence of Vaso-Occlusive Crises (VOC) was estimated based on hospitalizations, emergency visits, reimbursement for opioids, transfusions (routine transfusions excluded) or sick leave; incidence of hospitalized complications and costs of care were compared to randomly selected controls matched 1:1 on age, sex and residence area.
Results
| Group 1 | Group 2 |
n | 257 patients | 157 patients |
Women (%) | 64.6 | 58.5 |
Median age (years old) | 31 [IQR 12-42] | 33 [IQR 17-48] |
Hydroxyurea (%) | 23.3 | 37.6 |
2016 France Estimated prevalence | 48.6 per 100,000 or 32,400 patients | 29.7 per 100,000 or 19,800 patients |
Average incidence of VOC (hospitalized or not) | 1.5 / patient / year | 1.9 / patient / year |
Incidence of hospitalizations | 0.70 / patient / year | 1.11 / patient / year |
Including VOC (/ patient / year) | 0.40 | 0.62 |
Including transfusion (/ patient / year) | 0.07 | 0.12 |
Including renal failure (/ patient / year) | 0.06 | 0.10 |
Annual cost of care | €5,529 | €6,644 |
Incremental annual cost of care vs general population | €4,176 (p < 0.001) | €5,393 (p < 0.001) |
For both groups, patients hospitalized for VOC had an average length of stay of 4.3 (± 4.0) days, with 7.6% of hospitalizations requiring intensive care for an average of 6.3 (± 8.4) days.
Conclusion
SCD prevalence in France is estimated between 19,800 and 32,400 patients, higher than previously published. Outpatient VOC might be underestimate. The proportion of patients receiving hydroxyurea was lower than expected in group 1 but similar to previously published clinical practice data for group 2. This study confirms the economic cost associated with SCD.
Session topic: 26. Sickle cell disease
Keyword(s): Epidemiology, Sickle cell
Abstract: EP1521
Type: e-Poster
Background
Sickle cell disease (SCD) is the most common genetic disease worldwide. Despite SCD being acknowledged as a national health priority since 2004, published epidemiological and disease burden data on SCD are limited in France.
Aims
Estimate SCD prevalence, complications incidence, and cost of care in the French setting.
Methods
A 1/97th random sample of the National Health Data System was used. This database includes all French beneficiaries except students and patients in the State Medical Assistance program. SCD patients were identified based on their reimbursement claims between 2006 and 2016 with two set of inclusion criteria:
- Group 1: An inpatient stay associated with a SCD diagnosis (ICD D570, D571 or D572 excluding D573 -sickle cell trait-), or chronic long-term disease status (ALD) for SCD, or a reimbursement for Siklos® or Hydrea® (excluding for Hydrea®, patients with ALD for haematologic cancer or above 30 yo).
- Group 2: At least two inpatient stays associated with SCD diagnosis, or ALD for SCD, or a reimbursement for Siklos® or Hydrea®. This group was selected to reduce the inclusion of miscoded SCD patients by including only the most symptomatic patient.
The incidence of Vaso-Occlusive Crises (VOC) was estimated based on hospitalizations, emergency visits, reimbursement for opioids, transfusions (routine transfusions excluded) or sick leave; incidence of hospitalized complications and costs of care were compared to randomly selected controls matched 1:1 on age, sex and residence area.
Results
| Group 1 | Group 2 |
n | 257 patients | 157 patients |
Women (%) | 64.6 | 58.5 |
Median age (years old) | 31 [IQR 12-42] | 33 [IQR 17-48] |
Hydroxyurea (%) | 23.3 | 37.6 |
2016 France Estimated prevalence | 48.6 per 100,000 or 32,400 patients | 29.7 per 100,000 or 19,800 patients |
Average incidence of VOC (hospitalized or not) | 1.5 / patient / year | 1.9 / patient / year |
Incidence of hospitalizations | 0.70 / patient / year | 1.11 / patient / year |
Including VOC (/ patient / year) | 0.40 | 0.62 |
Including transfusion (/ patient / year) | 0.07 | 0.12 |
Including renal failure (/ patient / year) | 0.06 | 0.10 |
Annual cost of care | €5,529 | €6,644 |
Incremental annual cost of care vs general population | €4,176 (p < 0.001) | €5,393 (p < 0.001) |
For both groups, patients hospitalized for VOC had an average length of stay of 4.3 (± 4.0) days, with 7.6% of hospitalizations requiring intensive care for an average of 6.3 (± 8.4) days.
Conclusion
SCD prevalence in France is estimated between 19,800 and 32,400 patients, higher than previously published. Outpatient VOC might be underestimate. The proportion of patients receiving hydroxyurea was lower than expected in group 1 but similar to previously published clinical practice data for group 2. This study confirms the economic cost associated with SCD.
Session topic: 26. Sickle cell disease
Keyword(s): Epidemiology, Sickle cell