EPIDEMIOLOGY AND DISEASE BURDEN OF SCD IN FRANCE: A DESCRIPTIVE STUDY BASED ON A FRENCH NATIONWIDE CLAIMS DATABASE
Author(s): ,
Henri Leleu
Affiliations:
public health expertise,Paris,France
,
Jean-Benoît Arlet
Affiliations:
Internal Medicine Department, Sickle Cell Referral Center,Georges Pompidou European Hospital (AP-HP),Paris,France
,
Anoosha Habibi
Affiliations:
Sickle Cell Referral Center, Internal Medicine Unit, IMRB team 2, UPEC, Labex GRex,Henri Mondor Hospital (AP-HP),Créteil,France
,
Maryse Etienne-Julan
Affiliations:
Referral Center for Sickle Cell Disease,Pointe à Pitre Hospital, Antilles University,Guadeloupe,France
,
Marine Pitel
Affiliations:
Pfizer,Paris,France
,
Anna Granghaud
Affiliations:
Pfizer,Paris,France
,
Cynthia Sinniah
Affiliations:
Pfizer,Paris,France
,
Mariane De Montalembert
Affiliations:
Department of General Pediatrics and Pediatric Infectious Diseases, Reference Center for Sickle Cell Disease,Necker Hospital for Sick Children (AP-HP),Paris,France
Frédéric Galacteros
Affiliations:
Sickle Cell Referral Center, Internal Medicine Unit, IMRB team 2, UPEC, Labex GRex,Henri Mondor Hospital (AP-HP),Créteil,France
(Abstract release date: 05/14/20) EHA Library. Leleu H. 06/12/20; 294006; EP1521
Dr. Henri Leleu
Dr. Henri Leleu
Contributions
Abstract

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

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