Results of a Licensure Needs Assessment Survey of Michigan Genetic Counselors

1
Results of a Licensure Needs Assessment Survey of
Michigan Genetic Counselors

• Jessica Mester, B.S.
• MAGiC Meeting, March 9th, 2005

2
What is a Needs Assessment?

• Important first step
• Literally, assesses a need in a community
  regarding a specific issue

3
Why Perform a Needs Assessment?

• Discover how Michigan genetic counselors and
  Ph.D. Medical Geneticists feel about licensure
• Uncover any misconceptions about licensure
• Gather opinions on controversial issues (i.e.
  eligibility, supervision, ordering tests)

4
Survey Design

• Summer 2004 Contacted leaders of licensure
  efforts in other states listed on NSGC website
• July 2004 Obtained sample surveys from Texas and
  California Licensure Working Groups

5
Survey Design

• Gathered input from a variety of sources
• Michigan Licensure Working Group
• NSGC Licensure Subcommittee
• U of M Research Committee
• Several revisions of survey instrument
• Reviewed and approved by IRBMED at the University
  of Michigan

6
Survey Methodology

• 36 questions long
• Sent by e-mail to 66 individuals in Michigan
• 63 genetic counselors, 3 Ph.D. Medical
  Geneticists
• 1 e-mail rejected, 3 GCs moved to other states
• Received responses from 41 individuals
• 38 genetic counselors, 3 Ph.D. Medical
  Geneticists
• 38 by e-mail, 3 by postal mail

7
Study Limitations

• Response rate at least 66 (41/62) within a 3
  week time period
• Ascertainment bias?
• Small sample sizes ? difficulty determining
  statistical significance
• only 3 Ph.D. Medical Geneticists surveyed

8
Data analysis

• Statistical significance plt0.05
• Trends plt0.10
• Used Chi-Square analysis and logistic regression
  as implemented in SPSS v. 13.0

9
Interpretation

• Unless specifically noted, there were no
  statistically significant differences between
  demographic groups (i.e. board-certified vs.
  board-eligible counselors, clinical vs. other
  roles, etc.)

10
Results Overview

• Section I Demographic Information
• Section III Thoughts on Licensure
• Section II Language in a Potential Bill

11
Certification Status

• 28 ABGC/ABMG-certified Genetic Counselors (GCs)
• 1 not currently in practice data not included
• 10 ABGC-eligible GCs
• All planning to take next board exam
• 3 ABMG-certified Ph.D. Medical Geneticists (MGs)

12
Years Employed

13
Gender

14
Highest academic degree

15
Primary Role
N26
N5
N3
N2
N1
16
Subspecialties (for Clinical GCs)
N
17
Primary Employment Setting

18
Outreach Participation

19
Primary Supervisor
N
20
Results Overview

• Section I Demographic Information
• Section III Thoughts on Licensure
• Section II Language in a Potential Bill

21
Q31 Overall thoughts about licensure
N19
N19
N1
N1
22
Groupwise Comparisons

• Board-certified counselors were about six times
  more likely than board-eligible counselors to
  strongly support licensure (vs. support)
  p0.044, CI1.049-34.317
• Cancer counselors were significantly more likely
  to strongly support licensure (vs. support)
  p0.026, OR12.9

23
Q32 Reasons to support

• I feel it is necessary to legally ensure that
  only individuals with the appropriate education
  are providing the public with information about
  their genetic risks.
• I feel it is necessary to have an enforceable
  method of penalization for those who violate
  ethical standards of practice.
• I believe it is necessary to have a legal
  definition for who may and may not use the job
  title genetic counselor.

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Q32 Reasons to support

• I feel it is important for genetic counseling to
  be in-line with other healthcare professions
  that require a license.
• I believe licensure would further legitimize
  genetic counseling as a distinct allied
  healthcare profession.
• I believe licensure will protect genetic
  counselors from litigation.
• Two spaces to write in other responses.

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Q32 Reasons to support

• 1st strongest
• Appropriate education (20/37)
• Legitimize GC as distinct HC prof. (10/37)
• Imp. for GC to be in-line (4/37)
• Legal definition for GC job title (3/37)

• 2nd strongest
• Tie Legal definition and Legitimize (10/37)
• Tie Appropriate education and In-line (7/37)
• Penalization for ethical violations (2/37)
• Other for billing purposes (1/37)

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Q32 Reasons to support
N
27
Q32 Significant Trends

• Those practicing adult genetics and those
  supervised by PhD Medical Geneticists all
  selected appropriate education as either their
  first or second choice
• No person supervised by a non-geneticist
  subspecialty physician chose job title as
  either their first or second choice p0.033

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Q32 Significant Trends

• Board-eligible counselors were more likely to
  select further legitimize than board-certified
  counselors p0.009, OR13.0
• Those working 5 or more years were more likely to
  select in-line p0.041, OR6.86
• Cancer and Adult Genetics counselors were less
  likely to select further legitimize than others
  p0.009, OR18.0 and p0.048, OR12.86
  respectively

29
Q29 Need for GC to be licensed?
N33
N7
30
Q30a Public protection
N30
N8
N2
31
Q30b Further legitimize
N39
N1
32
Q30c Lawsuits
N18
N21
N1
33
Q30d Practice independently
N13
N26
34
Q34-35 Harm caused by inaccurate information

• Q34 From a genetic counselor?
• 3 of 39 (7.7) answered Yes
• Q35 From another healthcare worker?
• 21 of 38 (55.3) answered Yes
• I clean up A LOT of messes, especially with VUS
  in BRCA ½. No patient has DIED, but the
  psychosocial impact is something difficult to
  measure.

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Results Overview

• Section I Demographic Information
• Section III Thoughts on Licensure
• Section II Language in a Potential Bill

36
Q11 Who should be eligible to obtain a GC
license?

37
Q11 GCs compared to MGs

38
Q12 What GC roles should require a license?

39
Q12 Trends

• Those whose primary role is teaching were less
  likely to say that GCs in a teaching role should
  require a license than those in other primary
  roles.

Teaching should NOT be included Teaching SHOULD be included
Primary role is teaching 2 1
Primary role is other than teaching 6 31
p0.096 OR10.3
40
Q12 Trends

41
Q13 What kind of exam?
Other responses If board certified- no exam
The Michigan licensure board should be
responsible for a licensing examination for those
who are waiting for the ABGC certification exam
ACMG boards Above should read ABMG OR ABGC
certification examination
N37
N4
42
Q14 Continuing education requirements?
Other response Not sure what they should be,
but individuals in specialized fields may not be
able/allowed to attend enough educational
activities to fulfill ABCG sic requirements.
N36
N1
43
Q15 Need for temporary licenses?
N30
N6
N3
44
Q15 Comparison between groups

45
Q16 Who should have a temporary license?

46
Q17 Limit on temporary licenses?
Other response I think that there is a
question missing here this is assuming that
ABGC is the key
N28
N1
47
Q22 Supervision required for fully licensed GCs?
N11
N17
N9
48
Q22 BC compared to BE GCs

49
Q23 Who may supervise?
N
50
Q24 Additional sup. for GCs with temp. licenses?
N23
N9
N5
51
Q24 BC compared to BE GCs

52
Q25 Who may supervise GCs with temp. licenses?
N
53
Q18 How are your visits arranged?
Other responses Part of my time is spent in
private practice and I have no supervision.
Note Supervisor in room only if a physical exam
is required. I am part of a team and MD sees
all patients. MD is available in person,
phone or page to discuss case if needed and
co-sign clinic notes for billing purposes.
N6
N8
N3
N12
54
Q19 How would you prefer visits arranged if
licensed?
Other responses Supervision only necessary if
a physical exam or medical treatment/procedure is
appropriate during the appointment.
Supervisor review non-routine cases. No
supervision for counseling visits, supervisor
present for cases involving exam. This needs
to be flexible, based on the setting.
Supervisor is available but not necessarily on
site
N9
N14
N1
N6
N7
55
Changes within groups

• Have Supervisor on site (8)
• 7 Same response
• 1 Supervisor reviews all cases
• 1 Supervision not necessary
• Have Supervisor reviews all cases (3)
• 2 Same response
• 2 Supervisor meets with each for billing
• 1 Other

56
Changes within groups

• Have Supervisor meets for billing (12)
• 7 Supervisor available on site
• 4 Supervisor reviews all cases
• 2 Same Response
• 1 Supervision not necessary
• 1 Other
• Have Other (5)
• 1 Supervisor reviews all cases
• 4 Same Response

57
Q20 What type for cases with only GC?
Other responses Supervisor available to
discuss cases, not required on site. A
supervisor reviews all cases with a GC on a
regular basis. Case dependent Available
being the operative word in the first option
and not mandatory supervision
N5
N6
N22
N5
N5
58
Q26 Support private practice?
N28
N10
N2
59
Q26 Trends

• Individuals who have a primarily clinical role
  were about 6 times less likely to support private
  practice. p 0.124

Yes No or Dont Know
Clinical 18 11
Not clinical 10 1
p0.124 OR6.1
60
Q27 Which components of genetic testing should a
fully-licensed GC be able to perform independent
of a physician?

• Deciding which genetic test to order
• Ordering the genetic test in the genetic
  counselors name
• Deciding which laboratorys testing services to
  utilize
• Obtaining informed consent from patients.
• Interpreting genetic test results for patients
• I do not feel that GCs should be able to perform
  any components of genetic testing independent of
  a physician.

61
Q27 Components of genetic testing
N23
N14
N2
62
Q27 Components of genetic testing
63
Q28 What types of genetic tests should a GC be
able to order independent of a physician?

• Prenatal screening tests
• Fetal diagnostic tests
• Carrier testing
• Diagnostic genetic testing for adults
• Diagnostic genetic testing for children
• Predictive genetic testing
• Presymptomatic genetic testing

64
Q28 Types of genetic tests
N11
N7
N20
65
Q28 Types of genetic tests
66
Q28 Notable comparisons

• Pediatric counselors were more likely to believe
  that GCs should be able to order presymptomatic
  genetic testing

Presymptomatic Not presymptomatic
Pediatric counselors 8 3
Non-pediatric counselors 7 11
p0.077 OR4.2
67
Q28 Notable comparisons

• Cancer counselors were more likely to believe
  that GCs should be able to order diagnostic
  testing for children.

Dx testing for children Not dx testing for children
Cancer counselors 4 2
Non-cancer counselors 5 17
p0.064 OR6.8
68
Q28 Trends

• Pediatric counselors were more likely to believe
  that GCs should be able to order fetal diagnostic
  tests.
• Cancer counselors were more likely to believe
  that GCs should be able to order diagnostic tests
  for adults.
• 100 of counselors who participate in outreach
  believe that GCs should be able to order some
  types of tests independently.

69
Final comments

• I support licensure as long as it does not
  prevent certified GCs from going into private
  practice. This would include seeing patients in
  other states. For instance, I currently live in
  Michigan but through my private practice I
  provide GC services for an IVF clinic in Florida.
  I would want to be able to continue this
  arrangement as a licensed GC whether or not in
  Florida, or any other state, had licensure laws.
  Furthermore, I would support that only licensed
  GCs would be able to go into private practice.

70
Final Comments

• I think that there are some important points
  that have been missed above. I feel that Myriad
  is a perfect example of ways that others will
  by-pass the need for using the term genetic
  counselor, but yet still provide these services.
  So, will all this effort be for nothing? Also,
  will all this effort only be to license a few
  select individuals in Michigan? Will the public
  and other HC professionals even realize this
  effort? Importantly, will this limit access to
  care??? This is the most important question from
  insurers and PH professionals! I think this
  question needs to be desperately examined, and
  very carefully considered!

71
Final Comments

• The only question I had difficulty in answering
  is regarding our involvement with independently
  ordering tests. I feel we have the capability to
  order prenatal tests for the majority of
  patients, but pediatric cases should be assessed
  a PhD or MD with their added medical training. I
  feel we would be opening ourselves up to
  tremendous liability and possible harm to our
  patients. On the other hand we are often the
  ones ensuring all and correct tests are ordered
  especially when working with other physician
  specialists. Not sure what the right answer is.

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Final Comments

• It is so clear that doing genetic counseling is
  a highly specialized area of expertise, and that
  only those that are licensed, following
  appropriate training and evaluation, should do
  GC.
• How is the issue of nursing in genetics being
  addressed? Genetic Nursing certification is
  available at the BS and MS level.

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Acknowledgements

• Licensure Working Group
• Cheryl Harper, MS
• Angela Trepanier, MS
• Helga Toriello, PhD
• Jacquelyn Riley, MS
• Breanna Cox, MS
• Rajani Aatre-Keshavamurthy, MS
• Carrie Couyoumjjian, MS
• NSGC Licensure Subcommittee
• Chris Miller, MS
• Sara Goldman, MPH
• Dan Riconda, MS
• Karen Potter, MS

• University of Michigan Research Committee
• Wendy Uhlmann, MS
• Laura Rozek, MPH
• Beverly Yashar, PhD, MS
• Edward Goldman, JD
• Cleopatra Caldwell, PhD
• Jerome Gorski, MD
• All survey participants!