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Results of a Licensure Needs Assessment Survey of Michigan Genetic Counselors Jessica Mester, B.S. MAGiC Meeting, March 9 th, 2005.

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Presentation on theme: "Results of a Licensure Needs Assessment Survey of Michigan Genetic Counselors Jessica Mester, B.S. MAGiC Meeting, March 9 th, 2005."— Presentation transcript:

1 Results of a Licensure Needs Assessment Survey of Michigan Genetic Counselors Jessica Mester, B.S. MAGiC Meeting, March 9 th, 2005

2 What is a Needs Assessment? Important first step Important first step Literally, assesses a need in a community regarding a specific issue 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 Discover how Michigan genetic counselors and Ph.D. Medical Geneticists feel about licensure Uncover any misconceptions about licensure Uncover any misconceptions about licensure Gather opinions on “controversial issues” (i.e. eligibility, supervision, ordering tests) 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 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 July 2004: Obtained sample surveys from Texas and California Licensure Working Groups

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

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

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

8 Data analysis Statistical significance: p<0.05 Statistical significance: p<0.05 Trends: p<0.10 Trends: p<0.10 Used Chi-Square analysis and logistic regression as implemented in SPSS v 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.) 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 I: Demographic Information Section III: Thoughts on Licensure Section III: Thoughts on Licensure Section II: Language in a Potential Bill Section II: Language in a Potential Bill

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

12 Years Employed %

13 Gender %

14 Highest academic degree %

15 Primary Role N=26 N=5 N=3 N=2 N=1

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

21 Q31: Overall thoughts about licensure N=19 N=1

22 Groupwise Comparisons Board-certified counselors were about six times more likely than board-eligible counselors to strongly support licensure (vs. support) [p=0.044, CI= ] Board-certified counselors were about six times more likely than board-eligible counselors to strongly support licensure (vs. support) [p=0.044, CI= ] Cancer counselors were significantly more likely to strongly support licensure (vs. support) [p=0.026, OR=12.9] Cancer counselors were significantly more likely to strongly support licensure (vs. support) [p=0.026, OR=12.9]

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 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 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’”. “I believe it is necessary to have a legal definition for who may and may not use the job title ‘genetic counselor’”.

24 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 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 would further legitimize genetic counseling as a distinct allied healthcare profession.” “I believe licensure will protect genetic counselors from litigation.” “I believe licensure will protect genetic counselors from litigation.” Two spaces to write in other responses. Two spaces to write in other responses.

25 Q32: Reasons to support 1 st strongest: 1 st 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) 2 nd strongest: 2 nd 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)

26 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 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 [p=0.033] No person supervised by a non- geneticist subspecialty physician chose “job title” as either their first or second choice [p=0.033]

28 Q32: Significant Trends Board-eligible counselors were more likely to select “further legitimize” than board- certified counselors [p=0.009, OR=13.0] Board-eligible counselors were more likely to select “further legitimize” than board- certified counselors [p=0.009, OR=13.0] Those working 5 or more years were more likely to select “in-line” [p=0.041, OR=6.86] Those working 5 or more years were more likely to select “in-line” [p=0.041, OR=6.86] Cancer and Adult Genetics counselors were less likely to select “further legitimize” than others [p=0.009, OR=18.0 and p=0.048, OR=12.86 respectively] Cancer and Adult Genetics counselors were less likely to select “further legitimize” than others [p=0.009, OR=18.0 and p=0.048, OR=12.86 respectively]

29 Q29: Need for GC to be licensed? N=33N=7

30 Q30a: Public protection N=30 N=8 N=2

31 Q30b: Further legitimize N=39 N=1

32 Q30c: Lawsuits N=18 N=21 N=1

33 Q30d: Practice independently N=26 N=13

34 Q34-35: Harm caused by inaccurate information Q34: From a genetic counselor? Q34: From a genetic counselor? –3 of 39 (7.7%) answered “Yes” Q35: From another healthcare worker? 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.”

35 Results: Overview Section I: Demographic Information Section I: Demographic Information Section III: Thoughts on Licensure Section III: Thoughts on Licensure Section II: Language in a Potential Bill 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. 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 21 Primary role is other than teaching 631 p=0.096 OR=10.3

40 Q12 Trends %

41 Q13: What kind of exam? N=37 N=1 N=4 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…”

42 Q14: Continuing education requirements? N=36 N=1 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.”

43 Q15: Need for temporary licenses? N=30 N=6 N=3

44 Q15: Comparison between groups %

45 Q16: Who should have a temporary license? %

46 Q17: Limit on temporary licenses? N=28 N=1 Other response: “I think that there is a question missing here – this is assuming that ABGC is the key”

47 Q22: Supervision required for fully licensed GCs? N=11 N=17 N=9

48 Q22: BC compared to BE GCs %

49 Q23: Who may supervise? N

50 Q24: Additional sup. for GCs with temp. licenses? N=23 N=9 N=5

51 Q24: BC compared to BE GCs %

52 Q25: Who may supervise GCs with temp. licenses? N

53 Q18: How are your visits arranged? N=8 N=3 N=12 N=6 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.”

54 Q19: How would you prefer visits arranged if licensed? N=14 N=7 N=6 N=9 N=1 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”

55 Changes within groups Have: Supervisor on site (8) Have: Supervisor on site (8) –7: Same response –1: Supervisor reviews all cases –1: Supervision not necessary Have: Supervisor reviews all cases (3) 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) 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) Have: Other (5) –1: Supervisor reviews all cases –4: Same Response

57 Q20: What type for cases with only GC? N=22 N=5 N=6 N=5 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…”

58 Q26: Support private practice? N=28 N=10 N=2

59 Q26: Trends Individuals who have a primarily clinical role were about 6 times less likely to support private practice. [p =0.124] Individuals who have a primarily clinical role were about 6 times less likely to support private practice. [p =0.124] Yes No or Don’t Know Clinical1811 Not clinical 101 p=0.124 OR=6.1

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 Deciding which genetic test to order Ordering the genetic test in the genetic counselor’s name Ordering the genetic test in the genetic counselor’s name Deciding which laboratory’s testing services to utilize Deciding which laboratory’s testing services to utilize Obtaining informed consent from patients. Obtaining informed consent from patients. Interpreting genetic test results for 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. 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 N=23 N=2 N=14

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

64 Q28: Types of genetic tests N=11 N=20 N=7

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 Pediatric counselors were more likely to believe that GCs should be able to order presymptomatic genetic testing Presymptomatic Not presymptomatic Pediatric counselors 83 Non- pediatric counselors 711 p=0.077 OR=4.2

67 Q28: Notable comparisons Cancer counselors were more likely to believe that GCs should be able to order diagnostic testing for children. 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 42 Non-cancer counselors 517 p=0.064 OR=6.8

68 Q28: Trends Pediatric counselors were more likely to believe that GCs should be able to order fetal diagnostic tests. 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. 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. 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.” “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!” “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.” “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.”

72 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.” “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.” “How is the issue of nursing in genetics being addressed? Genetic Nursing certification is available at the BS and MS level.”

73

74 Acknowledgements Licensure Working Group 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 NSGC Licensure Subcommittee –Chris Miller, MS –Sara Goldman, MPH –Dan Riconda, MS –Karen Potter, MS University of Michigan Research Committee 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! All survey participants!


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