Melissa Olfert, DrPH, MS, RD (Chair)Pamela J. Murray, MD, MHPMelanie Clemmer, PhD

1

Role of the Dietitian in Multidisciplinary Treatment of Polycystic Ovary Syndrome

Wendy Thompson

Outline

• Introduction/Background• Study Objectives• Study Design• Methodology• Results• Conclusions• Future Research • Questions

2

The Significance of the PCOS

3

National Institutes of Health Office of Disease Prevention, 2012

4 Billion Dollars!

Does NOT includeco-morbidities

Pathophysiology of PCOS

4

Alex Rotstein, Raginin Srinivasan, Erin WongMcMaster Pathophysiology Review (MPR), 2013

How is PCOS Diagnosed?NIH 1990 Rotterdam 2003 AE-PCOS Society 2006

• Hyperandrogenism• Chronic Anovulation

---Both criteria needed

• Hyperandrogenism• Oligo-and/or anovulation• Polycystic ovaries

---2 of 3 criteria needed

• Hyperandrogenism• Ovarian dysfunction

---Both criteria needed

First developed and most commonly used criteria today

Formulated to expand on NIH diagnostic definition

Formulated to provide an evidence-based definition

5

*All possible related disorders must be ruled out

NIH Evidenced Based Methodology Workshop on PCOS, 2012; Shannon et al. 2012 2

~ 50-75% will visit multiple clinicians before it is identified2

Health Implications of PCOS• Obesity• Type 2 Diabetes• CVD• Infertility• Depression/Anxiety• Dermatological Symptoms

• Metabolic Syndrome• Hypothyroidism• Eating Disorders• Obstructive Sleep Apnea• Endometrial/Ovarian

Cancer

6

Sirmans & Pate, 2014; Daniilidis A. & Dinas K., 2009

PCOS Treatment• Lifestyle intervention =

first line treatment1-3

• Support medical management

• Weight loss is best achieved though multidisciplinary lifestyle management4

• Requires ongoing support for long-term success5-6

7

Teede et al, 20111; Humphreys & Costarellil, 20082; Jeanes et al, 20093; Moran et al, 20094; Himelein, 20065; Stankiewicz, 20066

Physical Activity

DietSmoking Cessation

Stress

Benefits of Weight Loss in PCOS• Potential Benefits

Include1-3:• insulin levels

• testosterone

• risk for CVD and diabetes

• Improved dermatological symptoms

• Improved fertility8

• Weight loss of 5% to 10% can improve metabolic and reproductive aspects of PCOS1-2

• Does not reverse PCOS, but helps control associated co-morbidities3

Teede et al, 20111; Farhat et al, 20112; Barthelmess & Naz, 20143

Nutritional InterventionsCurrent diet recommendations:• Energy for weight

maintenance or loss1-2

• Moderate to low glycemic index1-3 • Carbohydrates2 (35-40%)3

• Evenly distribute energy intake1,3

• 4-5 meals/snacks per day

• General healthy guidelines

9

Moran et al, 20131; Academy of Nutrition and Dietetics, Nutrition Care Manual, 20142, Grassi, The Dietitian’s Guide to PCOS, 20073

No optimum dietary composition1

Current Utilization and Knowledge of Dietitians• Interview-Guided

Questionnaire (N=53)1

• 26% of overweight were referred to RD

• Patients reported diet advice from endocrinologist to be useful, but inadequate

• Survey Report (N=206)2

• 15% saw a dietitian• 3% over 2 visits with RD

• Knowledge of Dietitians• Survey (N=105)2

• Only 34% felt well informed

• 64% believed there was an insufficient evidence base for the dietary management of PCOS

10

Humphreys & Costarellil, 20081; Jeanes et al, 20092

There has been no published research on the current utilization or knowledge of dietitians and PCOS in the USA

Proposed Benefits of Dietitians

11

Geier et al, 2012

Ped. E

ndo.

Dietitian

Gynec

ologist

Psychologis

t

100%76% 71% 61%

% of Patients Seen by Providers

Only study that has assessed potential benefits of dietitians

Study Objectives

• Objective 1: To investigate the current trends and future implications for multidisciplinary treatment of PCOS across different providers

• Objective 2: To explore the role, importance and challenges for RDs in multidisciplinary PCOS treatment

12

Study Design

Phase 2: Focus Group Series (N=9)

Phase 1: Survey (N=261)

13

Timeline of Project

14

PHASE 1:Survey Tool

DevelopmentFebruary - April 2013

WVU's IRB Approval

March 2013

Survey RecruitmentMarch - June

2013

Survey OpenMay 15th - July 15th,

2013

Survey Data AnalysisAugust -

November 2013

PHASE 2:Focus Group

PlanningNovember -

January

WVU's IRBAddendum Approval

Early January 2014

Focus Group RecruitmentJanuary 2014

Focus Groups Conducted

Late January2014

Focus Group Data Analysis

February 2014

Survey Recruitment

Survey Participants

N=261

LISTSERVs:• SAHM• NASPAG• SART-ASRM• EmbryoMail

LinkedIn Groups

Direct Emails

15Inclusion Criteria:• Health Care Provider• Currently Treat PCOS

Phase 1

Focus Group Recruitment

16

Focus Group Participants

N=9

US Survey Participants

(n=22)

Additional PCOS Experts (n=12)

Referrals (n=4)

Inclusion Criteria:• Health Care Provider• Currently Treat PCOS

Phase 2

Survey Design• Development:• 30 Questions• Basic Demographics• Current Facility • Future Implications

• Developed based on reviewing existing literature and clinics• Expert reviewed

• Implementation:• Qualtrics• Open for 2 months 17

Phase 1

Focus Group Methodology• Development:• 7 Major questions1

• Expert review• Implementation:• Held via teleconference1

• 2-3 note takers and facilitator• Audio recorded• Similar providers were placed

together to promote group cohesiveness2-3 and compatibility4-5 18

Phase 2

Stewart & Shamdasani, 19901; Cartwright et al, 19682; Terborg et al, 19763; Haythorn et al, 19564; Sapolsky, 19605

Survey Data Analysis

• Quantitative • Numerical Data• Mean, Median, Mode, Standard

Deviation

• Qualitative• Assessed for themes and

categorized accordingly using Excel (clustering)• Frequencies

19

Phase 1

Focus Group Data Analysis• Braun & Clarke’s Thematic Analysis1-2

• Identify, analyze and report patterns (themes) within data

• Guide to Thematic Analysis2

1. Become familiar with the data – transcribe, clean, & compile data2. Generate initial codes – assign participant ID numbers &

categories3. Search for themes – create code-list4. Review themes – rearrange as needed5. Define and name themes – code and sort data6. Producing the report – synthesize data

20

Phase 2

Boyatzis, 19981; Braun & Clark, 20062

Survey Results

21

Phase 1

Survey Sample

22

59%

20%

5%

3%3%

3%7%

Provider Type

PhysiciansDietitiansFertility SpecialistResearchersMidlevel ProvidersEducator/CounselorsOther

N=210

64%

36%

Location

USAOther

N=184

Geographical Demographics

West

Mid-W

estSo

uth

Northeast

05

10152025303540

15%

36%

22%27%

USA Regions

% o

f par

ticip

ants

Australi

a

North Americ

a*

Central A

merica

South

America

Europe

Middle East Asia

05

101520253035

5%10%

5%10%

34%

24%

12%

World Regions

% o

f par

ticip

ants

23N=74N=41

Participant Settings

24Hospita

l/Clin

ic

Private

Office

Researc

h Facil

ityOth

er0

10203040506070 66%

45%

8% 4%

Setting for Care

71%

23%

6%

Population Setting

Urban

Suburban

Rural

N=205

N=141

Multidisciplinary Specialties Involved

59%

41%

Multidisciplinary Status

Yes

No

25

Specialty # Involved % Involved

Dietitian/Nutritionist 94 71%

Physician 89 67%

Nurse 63 48%

Fertility Specialist 46 35%

Mid-Level Providers 37 28%

Social Worker 37 28%

Psychologist 34 26%

N=132

Strengths and Weaknesses of the Current System

05

10152025303540

34%30%

10%

Needs Improvement

% o

f Pro

vide

rs

26More Multidisc

iplinary

Involve

ment

Expand Nutriti

on & Exercise

Programs Elim

inate Access

Barriers*

* Wait-Time, Cost, InsuranceN=88

0

5

10

15

20

2521% 21% 20%

17%

Current Strengths

% o

f Pro

vide

rs

Management of S

ymptoms

Lifesty

le Changes

N=87Patient E

ducation & Counseling

Multidisciplin

ary Collaboration

Potential Barriers for Future Multidisciplinary Clinics

27

Money and resources (30%)

Insurance/reimbursement (26%)

Difference of opinions (16%)

Time

(12%)

N=76

Potential Advantages for Multidisciplinary Clinics

28

Increased access to

more disciplines (10%)

Better communication between providers (15%)

Better results & long-term outcomes (18%)

Convenience & efficiency (30%)

Comprehensive and integrated care (32%)

N=82

Ideal Involvement of Providers

Specialty NHighly

InvolvedInvolved Neutral

Occasionally Involved

Never Involved

Dietitian 110 59% 30% 6% 3% 2%

Endocrinologist 109 48% 36% 6% 7% 3%

Gynecologist 110 45% 43% 5% 5% 2%

Fertility Specialist

97 30% 33% 14% 13% 9%

Exercise Physiologist

95 18% 40% 18% 9% 15%

Health Psychologist

105 11% 45% 21% 15% 8%

29

Survey Conclusions• Multidisciplinary clinics could provider greater convenience,

access to care, and ultimately lead to a better prognosis for patients with PCOS

• The most common barriers identified included money/resources, insurance, and difference of opinions

• 90% of responders believed that dietitians should be either highly involved or involved

30

Phase 1

Focus Group Results

31

Phase 2

Focus Group Demographics• Dietitians• PCOS (4)

• Physicians• Adolescent/Internal

Medicine• Pediatric

Endocrinologist (2)

• Other• LN/CNS • Health Psychologist

32

67%33%

Multidisciplinary Clinic

YesNo

71%

29%

Gender

Female

Male

Focus Group Questions

Participants’ Treatment Facilit

y

• “Describe any nutritional interventions that you provide to your patients”• “How are dietary interventions and patient care communicated between

providers?”

Utilization of

Nutritional Interventio

ns

• When is dietary intervention warranted for a patient with PCOS?• How accessible are nutritional interventions for the majority of PCOS patients?

Challenges and

Changes

• “What are some of the challenges for getting dietitians more involved with PCOS?”

• “Do you feel like providers know and understand the value of nutritional interventions for PCOS patients?”

• In your career, have you seen any shift in the awareness or interest of PCOS? 33

Phase 2

Nutritional Interventions Provided

Physicians• Basic diet history• Brief nutrition education

Psychologist• Motivational interviews

to facilitate changes• Explore

emotional/mindless eating • Clarify information

--“Dietitian provides the education but the psychologist gets the change.”

34

Nutrition Interventions

Tasks of the RD

• Individualized treatment• Assess food coping

mechanisms• Explore emotional or

disordered eating habits• Help understand

condition

Specific Interventions

• Managing insulin resistance • General healthy eating

guidelines• Sensible dietary

supplementation• Correct nutrient

deficiencies• Assist in treatment 35

Communication Differences

Solo Providers

• Limited opportunity • No face to face

communication • Only email and progress

notes • Confidentiality barriers

• Not ideal, but still effective

Multidisciplinary

• More verbal communication • More integration of care• Little formal case

management • Varies by setting

36“In an ideal world, there would be PCOS treatment clinics all around the world and all the providers would have the opportunity to converse about each patient.”

When is Dietary Intervention Warranted

For PCOS?

• Always important to discuss and provide nutrition counseling

• Equally important regardless of BMI

• Immediately upon on diagnosis patients should meet with RD• First line treatment

How Accessible are Dietary Interventions

for PCOS?

• Not very accessible!

37

Challenges for Dietitians

Insurance

Lack of PCOS knowledge

Lack of physician referrals

Patient follow-through

38

Lack of Referrals from Physicians• Lack of insurance coverage

• Limited access

• Quick to write off as uninterested or noncompliant

• Little confidence

• Value pharmacological treatment

• Feel they have treatment covered

• Not educated on the value 39

“Physicians are the gatekeepers”

Lack of Patient Follow-Through• Lack of insurance coverage

• Not ready for change

• Practicality

• Stigma or punishment

• Overwhelmed

• Already know what the dietitian is going to tell them

40“It is just food – you are just going to tell me to eat asparagus rather than a snickers bar and I already know that.“

Importance of Involving RDs• Access to adequate

lifestyle interventions

• Physicians should not be fully responsible:• Little to no training

• “They can only be the experts on so many things”

• Takes time • “More than just

handing the patient a 1,200 kcal diet plan”

41

CDC – NCHS, Ambulatory Health Care Data, 20101

Average length of visit = 18.7 minutes

Shift in Awareness

• More information in the lay press • Patient-driven diagnosis• Support groups• Websites

• More awareness in medical community

• Providers still do not understand it • “It’s starting to get mentioned but it

doesn’t get the attention it deserves.”

42The better the clinician understands PCOS, the better they are able to treat it!

Discussion• Supports the findings:• Multidisciplinary clinics provide access to more disciplines1,2

• Patients need dietitians for adequate lifestyle management3

• Strengthens the need for evidence on the benefits of dietitians1

• Uncovered the potential under-utilization of health psychologist in addition to the RD3,4 for PCOS despite potential benefits1

• First study to gain insight from a mix of PCOS providers on potential implications of multidisciplinary clinics and the challenges of involving dietitians in the care of PCOS

43

Geier, 20121; Bekx, 20102; Humphreys, 20083; Jeanes, 20094

Limitations

• Small sample size

• Completion rate

• Missing equal representation of disciplines

• Self-reported experience

• Not generalizable to the entire population of healthcare professionals

44

Conclusions• PCOS patients require special attention with individualized, focused,

multidisciplinary care – ideally in one facility

• The most common challenges for dietitians include insurance, lack of knowledge, and lack of physician referrals

• Dietitians and health psychologist are highly overlooked when it comes to the care of PCOS

• Education for PCOS and lifestyle interventions need to be increased across providers

45

“Often times, with PCOS, nutrition counseling is treated like dermatology and it needs to be treated more like psychology.”

Future Research Aims

• Assess factors influencing weight loss/maintenance• Delivery methods• Frequencies• Long-term success

• Determine how to effectively educate:• Dietitians on PCOS • Physicians on the importance lifestyle interventions

• Development of a screening tool

46

Acknowledgments

Committee MembersDr. Melissa Olfert

Dr. Pamela MurrayDr. Melanie Clemmer

ORL Research TeamJade White

Mackenzie BarrFellow Interns

Family and Friends

Study Participants 47

Questions

48