Registry to Referral Using Birth Defects Surveillance Programs to by thefrenchman

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									  Registry to Referral: Using
  Birth Defects Surveillance
     Programs to Improve
      Access to Services
              Anita Farel
           April Montgomery

         15th Annual MCH Leadership Conference Chicago 2002




Larry Edmonds, CDC
Bob Meyer, NC Birth Defects Registry
Birth Defects Surveillance Program Contacts
NC March of Dimes, Western Carolina Chapter
              Methods
• An 18-question survey sent
  electronically to 52 birth defect
  surveillance programs.
   • Took 5 minutes
   • 100% response rate
• Two or more fixed responses to
  each question and an open-ended
  response,where appropriate.
• Minimum of 2 questions appropriate
  for each state
   • Do you have, or are you developing a
     birth defect surveillance program ?
   • To what extent are you using or
     considering using it for identification
     and referral?
Birth Defect Surveillance Programs (BDSP)
                 in the US*
   N=52 (*includes DC and Puerto Rico)



        33 have a BDSP              19 have NO BDSP



13 have      14 are     6 are not    15 are    4 are not
  I&R       planning    planning    planning   planning
systems       I&R          I&R       BDSP       BDSP
            systems     systems     and I&R
                                    systems




 5 have      8 have
mandato     optional
 ry I&R       I&R
systems     systems

 all have    5 have
evaluated   evaluated
             Organizational Location Within the
            Department of Health of Birth Defect
           Surveillance Programs (BDSP) with an
         Identification and Referral System (N=13)
         6



         5



         4
States




         3



         2



         1



         0
                                                       2       2
             Epi/Env
                    1            1
                         Vital Stats MCH
                                          1,3
                                                Folic Acid CSHCN   Special   Regulatory   Community
                                                                   Child,    &            & Family
              Health
                                                                   Adult     Licensure    Health
                                                                   &EI       Data         Admin
                                                                             Managem
             1Organizational Location in these three                         ent
             offices (n=1)
             2Organizational Location in these three
             offices (n=1)
   States with BDSP and
        I&R (N=13)
 Methods for making referrals
                        mn op
Method                    d   t
                                      (n= (n=
• Letter/info about available            5
  services sent directly to                 8
                                         )   )
  families
                                       5   6
• Letter/info sent to child’s
  physician                           3
• Child’s name provided to                 0
                                      2
  local health department                  4
• Family is referred directly         2
  to Infant-Toddler Program                1
• Other (education and orientation)   0
                                           1

                                                 Q5
   States with BDSP and
        I&R (N=13)
  Conditions included in BDSP

Condition(s)                           N
• All birth defects (excluding minor   8
  anomalies)                           4
• Specific birth defects               4
• Developmental disabilities           5
• Hearing loss




                                           Q6
    States with BDSP and
         I&R (N=13)
     I&R system effectiveness
            evaluation
Effectiveness factor evaluated                   N
• Timeliness or referral                         7
• Number/percentage of children                  5
  identified by BDSP who were referred
• Number/percentage of children                  3
  receiving services who were referred
  by BDSP                                        4
• Other (patient satisfaction, agency surveys)   3
• Have not evaluated effectiveness




                                                     Q7
      States with BDSP and
           I&R (N=13)
           Other I&R mechanisms
                                                         mn op
Mechanisms*                                                d    t
                                                         (n= (n=
• Parents self-refer
                                                            5  8
• Discharge planners/staff at                               )
  hospitals
                                                                )
                                                          5   7
• Local health departments
                                                          4   8
• Referrals from private
                                                          4
  physicians/health care                                      8
  providers                                               4
                                                              8
• Infant-Toddler Program
                                                          5
• Other (toll-free resource line, a birth risk scoring        6
    system)                                               2
                                                              0

* “none” was not selected by any state

                                                                    Q8
     States with BDSP and
          I&R (N=13)
  Benefits of using BDSP for I&R

Benefits                                                        N
• Registry has a direct beneficial                              12
  impact on families                                            11
• Improves visibility and PR for                                11
  surveillance program
• Improves integration of surveillance                          2
  program with MCH programs and
  services
• Other (improved integration with all public health systems,
   improved efficiency in child identification)




                                                                     Q9
   States with BDSP and
        I&R (N=13)
 Drawbacks of using BDSP for
            I&R

Drawback                             N
• Additional work for staff          8
                                     9
• Need for additional resources
  for our surveillance program to
                                     5
  manage this component
                                     3
• Negative reactions from families   1
• Negative reactions from            2
  providers
• Other (legal issues with HIPAA)
• None


                                         Q10
  States planning an I&R
          (N=29)
 I&R system development stage

Stage                                N
• Recently begun investigating       15
  feasibility
                                     11
• Begun initial stages of
  implementation                      8
• Developed task group to address    10
  issue                               3
• Obtained buy-in from                2
  programs/stakeholders
                                      9
• Legislation has been proposed or
  drafted                             3
• Legislation has been introduced     1
• Legislation has been passed
• Have begun testing system
• Have partial system in place
                                          Q12
   States planning an I&R
           (N=29)
   Methods for making referrals

Method                                          N
• Letter/info about available                    10
  services sent directly to families
• Letter/info sent to child’s                     7
  physician                                      11
• Child’s name provided to local                  3
  health department                               3
• Family is referred directly to                 11
  Infant-Toddler Program
• Other (various health screening programs, e.g.
  hearing screening)

• Not sure

                                                      Q13
  States planning an I&R
          (N=29)
  Conditions included in BDSP

Condition(s)                           N
• All birth defects (excluding minor   11
  anomalies)                            8
• Specific birth defects                3
• Developmental disabilities            8
• Hearing loss                         10
• Not sure




                                            Q14
    States planning an I&R
            (N=29)
        I&R system effectiveness
               evaluation
Effectiveness factor evaluated*                             N
• Timeliness or referral                                    18
• Number/percentage of children                             18
  identified by BDSP who were referred
• Number/percentage of children                             12
  receiving services who were referred
  by BDSP                                                   3
• Other (referral source, completeness/accuracy)            9
• Not sure




* “do not plan to evaluate” was not selected by any state

                                                                 Q15
    States planning an I&R
            (N=29)
           Other I&R mechanisms

Mechanisms*                                 N
•   Parents self-refer                      22
•   Discharge planners/staff at hospitals   21
•   Local health departments                21
•   Referrals from private providers        23
•   Early intervention programs              4




* “none” was not selected by any state

                                                 Q16
    States planning an I&R
            (N=29)
          Barriers to I&R system
             implementation
Barriers                                                     N
• Lack of legislation                                           8
• Lack of funding/personnel/resources 19
• Opposition from legislature or other                          1
  groups                                                       10
• Lack of infrastructure                                        5
• Lack of interest/support from MCH or 16
  EI groups                                                     5
• Concerns about confidentiality                                2
• Other (timeliness, kinks in system, informed consent issues,
   physician’s prerogative)

• None


                                                                    Q17
    States with BDSP,
  Not Planning I&R (N=6)

Reason                                      N
• Not considered a priority or function     2
  of our program                            4
• Identification and referral of children
  is handled by another program or          2
  agency                                    2
• Lack of legislation                       1
• Lack of funding/personnel/resources
• Concerns about confidentiality




                                                Q18

								
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