Impact of Social Support Networks on

Quality of Life in Celiac Disease

Anne Roland Lee, EdD, RD, LD

Director of Nutritional Services

Dr. Schar USA, Inc.

Overview

• The changing gluten-free market

• Impact of GFD on quality of life

• Unique role of social support systems

• Solutions and Practical Tips

Slide 2

The Gluten-free category

today

Slide 3

Focus on GF Diet for:

Weight loss

Healthy choice

Clean Eating

Evolving uses of the gluten-free diet – beyond Celiac Disease

• Gluten sensitivity, IBS,

Crohns

Estimated 6% of U.S. pop

Intolerance to gluten treated

through avoiding gluten in diet

Only treatment is the gluten-

free diet

• Wheat allergies

Estimated 5-7% of U.S. pop

Only treatment is avoidance of

wheat

Can be transient or seasonal

Treatment is diet

• Autism Spectrum Disorder &

Attention Deficit Syndromes

Estimated 2-5% of U.S. pop

Follow a recommended

gluten/casein-free diet

Very active and vocal

national/local support groups

Treatment : OT, PT and diet

• MS, Arthritis, Migraines

Estimated 2% of U.S. pop

Gluten-free diet is thought to

reduce inflammation and pain

Used in conjunction with other

therapies and medications

• Up to 43M people have an interest in gluten-free foods

Slide 4

Gluten-free category today – Consumer behavior

• General Consumer Trends

18 % of general consumers purchased a GF product in the past 3

months ( ^ of 3% vs. 2010)

65 % believe Gluten-Free is healthier

28 % of adults report avoiding gluten

24 % believe Gluten-Free products are higher quality

• Celiac and Gluten Sensitive Consumer

55 % spend over 30% of their total grocery budget

on Gluten Free

68 % shop 3 or more stores to find

Gluten-Free products

71 % want to do GF shopping in

their regular grocery store

Slide 5

Gluten-free category today

Slide 6

• Category growth and sales continue to rise

• Category evolution – Variety

Original assortment primarily mixes, frozen breads, cookies

600 items in 2007

By 2017 – sales will exceed $14 billion

Expected to continue to grow by 10 % through 2019

• Product quality

Significant improvement in taste, texture, nutritional value

More products comparable to mainstream products

• Manufacturers

Original dedicated companies & small regional packers, bakeries etc.

Natural and Organic add GF to portfolio

Large CPG Companies i.e. General Mills, Ralston, NBC, Anheuser-Busch

Gluten-Free Category Growth

Slide 7

0

2

4

6

8

10

12

14

2011 2012 2013

Core GF Category

Total GF Category

2013 Sales in billions of dollars

Core category $ 1.5

Total category $13.6

0%

5%

10%

15%

20%

25%

30%

2012 2013

Total Category

Core Category

Number of products

Core category ^ 29.4%

Total category ^ 16.1%

Source: SPINS 2013 data

What is Gluten?

Slide 8

Gluten is the general term for the storage protein found in grains

Gluten refers to the specific protein in:

Wheat

Rye

Barley

Gluten gives elasticity to dough,

- helping it rise and keep its shape

- gives the final product a chewy texture.

Gluten can be found in non food products

- Hair products

- Soaps

- Lotions

- Cosmetics

- Arts and craft materials

GFD and Quality of Life (QOL)

•For those with medical necessity - only treatment is the GFD

•Requires:

lifelong compliance to a rigid dietary pattern

Benefits are a well balanced intake of a variety of foods which

provide nutrients required for growth and repair

•Issues

limited awareness of GFD requirements in food service industry

increased reliance on manufactured GF products, associated with

increased weight and decreased nutrient status

creates challenges for individual and their social circle

•family, friends, coworkers

Slide 9

QOL Background

Why have QOL studies played such an important role in celiac research?

QOL encompasses the multifaceted well being of an individual

physical

economic **

social **

psychological

• Treatment of Gluten related disorders is also multifaceted

Only treatment is a highly restrictive diet

Initially poor availability of products

Increased cost of products

Impact on individuals daily lives

Slide 10

Economic Impact on Quality of Life

•Stevens & Rashid (2008) Canadian study

2 large chain grocery stores

Price comparison of gluten-free and gluten containing products

Gluten-free products – 242% more expensive (p< 0.0001)

•Lee et al (2009) US study

USDA market basket of gluten-free and gluten containing counterparts

Compared prices across • 4 types of stores

• Online venues

• 5 different regions of the US

Gluten-free products - 240% more expensive

•Singh & Whelan (2011) UK study

30 stores across 5 categories (regular stores, budget, corner shops

10 gluten-free products and 10 gluten containing counterparts

Gluten-free products availability varied by location

Gluten-free generally more expensive (2 – 124%)

Slide 11

Cost comparisons of Gluten-Free and Regular products

Slide 12

Celiac is a “social” disease

•Diet – is the only treatment

•However

•Food is more than just meeting basic physiologic needs

•Diet and food are social in nature Sharing food

Meal preparation

Food choices

•Treatment is complex

requires elimination of gluten

complete avoidance of cross contamination

any exposure causes intestinal damage

Slide 13

Impact of the GFD on QOL

•Review of Studies (Samasca, et al., 2014 and Rose & Howard, 2013)

After 1 year on GFD quality of life improved

Levels of anxiety decreased

Increased BMI, reduced adiposity, moderation of associated

health risks

•However

Overall QOL and health perception improved but did not meet

general population

GFD associated with increased levels of depression, social

phobia, and feelings of isolation

GFD was associated with changed social identities and lifestyle

and experiences of grief

Children with celiac have low compliance with GFD: poor

palatability (32%), dining out (17%), decreased availability (11%)

Slide 14

The Issue – QOL is negatively affected, especially in the social domain.

European studies

Ciacci – 2002 Dig Dis Sci 47 (9)

• 114 on gluten free diet vs 25 untreated

• Measured emotional impact of diagnosis and feelings at follow up – Relief and reassurance at diagnosis - (p=0.0001)

– Anger, anxiety and fear most prominent at follow up (p= 0.0005)

Hallert -2006, Digestive and Liver Disease 38 (3)

• Population; 51 celiacs, 182 controls

• Psychological Well-Being Index - overall similar – 103 (95% CI 99-107) vs 103 (95% CI 100-106)

• Gender specific – celiac females significantly lower scores than males – 97 (95% CI 91-103) vs 111 (95% CI 106-117) P<0.003

Barratt et al. -2011,

• Population; 573 biopsy proven male celiacs, 348 male controls

• SF 36, Hospital Anxiety & Depression Scale – CD had reduced QOL compared to controls ( 44.9 vs 53.4; p>0.05)

– QOL score reduced with increasing difficulty in following GFD

– 80% reported difficulty following GFD

North American studies

Green et al: (2001, Am J Gastro)

• Quality of life prior to diagnosis “bad” 30%

• Quality of life after diagnosis “improved” 77%

• 20% of study population diagnosed > 60 years of age

• Average 11 years to diagnosis

Lee & Newman (2003, JADA)

• Pilot study: population 253 support group members

• Standard quality of life survey; SF12 with additional diet specific questions

– Women more negatively affected than men

– Largest impact on “social aspects” of life

» Areas of dining out, travel, and family life

Canadian support group population (2007, JHND)

• Females experienced greater negative impact

• 90% reported improvement on the diet

• 83% reported difficulties following diet included:

– Safe foods gluten free, locating foods in stores

– Avoiding restaurants and travel

Lee et all (2012, JHND)

• Population: 1735 celiac and 1186 controls

• SF 12 - - additional disease specific questions

• Initial improvement in QOL scores

– Overall health perception lower than controls (p=.001)

– 85% celiacs vs. 94% controls positive health perception ( p< .0001)

– 74% reported continued feeling “blue” vs. 59% controls

– Social domain most negatively affected

– Negative effect persists over time

Figure 2: Negative Impact of Gluten Free Diet on Quality of Life Over Time

0.0%

10.0%

20.0%

30.0%

40.0%

50.0%

60.0%

0-1 2-5 6-10 More than 10

Years Since Diagnosis

Perc

en

tag

e o

f P

op

ula

tio

n Im

pacte

d

Family Impact

Dine Out

Travel

Work

Quality of Life: impacted by GFD

Slide 18

47.0% felt limited in eating

with co-workers (Quite a

bit or A great deal)

35.5% felt limited in not

being able to have special

foods like birthday cake

and pizza

35.8% felt afraid to eat out

because of cross

contamination

Eating in social situations was most

impacted (Zarkadas, et al 2013 and Lee, et al, 2012)

This is how being gluten free should feel !

Slide 19

However….

This is how it often feels….

Slide 20

Impact of the GFD

•Real life responses •Ross & Howard ( 2013)

Social life • “I just want to be normal … I would rather go hungry”

GF diet is embarrassing • “I now wear gloves to make my children's’ sandwiches , which I hate”

• “worry about the negative perception of hosts when I have to turn down food, or the host

goes out of their way to find something I can eat”

Dining out on GF diet • “I have had to have a plain salad while I watched everyone eat real food in front of me!”

GFD is socially isolating • “Peoples’ reaction to me changed when I said I couldn’t eat certain foods…”

Family and friends do not understand the need to follow the diet • “Because you can’t see the effects of the disease people think it is in your head”

Percentage and location of intentional noncompliance by gender

0

10

20

30

40

50

60

70

80

90

restaurants social friends

Females

Males

Why they cheat

•Even though it will cause damage…… •(Lee et al, 2012)

46.3 % GF diet limits social life

55.3 % report GF diet is embarrassing

24.9 % report difficulty in dining out on GF diet

30.8 % report diet is socially isolating

33.3 % report family and friends do not understand the need

to follow the diet

Are there solutions?

•Social support crucial to adherence Several studies show increased dietary adherence with support groups

•Four forms of social support had impact

Accommodation by family and friends

School and community support

Group support

Others in circle on GFD

Slide 24

Social Support Networks and QOL in chronic diseases

No data on social support network participation and QOL scores in patients with celiac disease

BUT……

Studies in other chronic diseases have shown an association between social support network participation and QOL scores

• Face-to-Face

• Chao, et al., 2013 (Hepatitis C)

• Vakharia, et al., 2007 (Head and Neck Cancer)

• Online

• Idriss, et al., 2009 (Psoriasis)

• Gustafson, et al., 2001 (Breast Cancer)

Slide 25

Celiac Disease and Social support study - in press 2015 JHND

•Study design Cross sectional study

Convenience sample of adults with celiac disease

Recruited from 2 sources • Online support networks (August 6 -21, 2013)

– announcement and link posted on celiac sites with link to survey: Facebook, Twitter, celiacdiva, glutendude, scharclub

– Completed survey on Survey Monkey

• In person events (September, 2012 – February 2013)

– distributed at celiac support group meetings

» Buffalo, NY, Albany, NY, Orange, NJ Chester, PA, Toms River, NJ, Livingston, NJ,

– distributed at gluten free expos

» Denver, CO, Dallas, TX, Rye, NY, Carmel, IN, Boston, MA, Columbus, OH

Significance

• We know that QOL is affected by social support in chronic

diseases – but currently do not know the role of different types

of social support networks, especially in health care in general

or specifically in celiac disease (Eysenbach, 2004)

• Social media and social support research with general

population indicates increased use of social media and social

support in health care (Fisher & Clayton, 2012)

56% of respondents use social media for appointment

reminders, cancellations, test results, and prescription

notifications

Of those not currently using social media 41.6% said they

would if their health care provider use it

Slide 27

Type of Social Support Used

Slide 28

Face-to-face Online Both Neither

Neither = 58%

Face-to-face = 11%

Online = 18%

Both = 13%

Results: type of social support by age

0

5

10

15

20

25

30

18 - 25 26 - 35 36 - 55 56 - 65 > 65

Face to Face

Online

Both

% p

opula

tion

Age categories

QOL score by social support network

Slide 30

63

64

65

66

67

68

69

70

71

72

73

Face-to-face Neither Online Both

QOL score

QOL score

Type of social support used

had a statistically significant

impact (p< 0.0001) on the

QOL scores - across age

and gender. Lee, 2014 – in press

Issues of online use

•Kraut, et al., 1998

73 families followed for 2 years

4 measures of social involvement:

• family communication, size of local social network, size of distant network, and social support, loneliness measure, depression scale interpersonal support evaluation

Increased loneliness and depression was associated with increased use of the internet (p<0.05)

Increased use of the internet associated with decreased family communication

•Kross, et al., 2013

82 individuals, SWLS (Satisfaction with Life Survey)

sent five messages a day for 2 weeks, each text had a link to an online survey to determine sense of well being, worry, and loneliness

Increasing use was associated with decreasing sense of well being (p=0.02), increasing sense of worry (p<0.001), and increasing loneliness (p<0.01)

However

- Increased number of face-to-face contacts

diminished the negative results of online use

QOL score by frequency and duration

Variable

Parameter

Estimate

Standard

Error t Value Pr > |t|

Intercept 70.29 0.43 161.84 <.0001

Face-to-face -0.13 0.23 -0.55 0.5813

Online -0.07 0.01 -7.35 <.0001

Summary of regression analysis for type of celiac support and frequency of use

Variable

Parameter

Estimate

Standard

Error t Value Pr > |t|

Intercept 68.07 0.62 110.32 <.0001

Face-to-face 0.59 0.17 3.48 0.0005

Online -0.16 0.08 -2.06 0.0393

Summary of regression analysis for type of celiac support and duration of use

Duration interval = 1/month

Frequency interval = 1/event

Key Findings

•42% reported using social support networks for social support

• Overall CD-QOL scores were generally good (68.9/100)

• QOL scores were associated with the type of social support used

Face-to-face social support participation had a positive associated

(p<0.0001)

Increased duration of face-to-face was positively associated with CD-

QOL (p<0.001)

Increased frequency of use of online social support was negatively

associated with CD-QOL (p<0.0001)

•Social domain of QOL remains problematic

• Respondents felt limited in eating with co-workers, felt isolated,

embarrassed and limited their social life

Thoughts, conclusion, and solutions

Individuals with celiac disease are negatively impacted by the gluten-free diet

Social and economic domains are most impacted

Need to identify areas that intervention can make a difference

Adolescents vulnerable group

Teens with celiac are at increased risk

So what do we do ?

Need to be empowered, need to:

Title Presentation 4/20/2011 Slide 35

Be Brave ……

Set targets high

Don’t be discouraged

Always have a back up

Work together

Support can come in many shapes and sizes

Don’t be afraid to ask

Get connected – use available resources

Local Support Groups

• Manitoba Chapter

Regional and National

• Canadian Celiac

• Gluten Intolerance Group (GIG)

• Celiac Disease Foundation (CDF)

• Celiac Sprue Association (CSA)

– Annual education conferences

– Educational materials

• National Foundation for Celiac Awareness

– Resources and information

– Family testing

– events

Slide 36

Don’t get Frozen out

Slide 37

Take a chance

Reach out

Be empowered

Support can come from the most unlikely places

In connecting –

You can help yourself

And others !!!

Social Support = Opportunities to change lives

• Support groups have a unique position

Offer social support

Feeling of community

Educational opportunities

• Many established groups

Go on line to find the one that meets your needs

• Start a new one

• Remember – the connection is the key

Age , interest, or activity based

Slide 38

New Strategy Need to re – think our ideas of support

need to include all domains of QOL - economic, social, psychological

How do we connect to the community ?

What opportunities and services are available

Most consumers actually see their retail dietitian more often than they see their doctor, priest, minister or rabbi

Retail dietitian and grocery stores provide a unique solution

Store based support groups

Store based events for education, sharing, and connections

• GF sampling

• Education days

Store level opportunities to change lives:

Future Possibilities

• Be brave – partner with the retailer

• Cooking classes for teens, children, families

• Store sponsored date night for tweens and teens

• Family night with pizza and a movie

• College connection

The possibilities are endless –

Dare to be creative

• it could make all the difference

Slide 40

Most important remember

- you don’t have to go it alone

Title Presentation 4/20/2011 Slide 41

Even the Lone Ranger had a

partner!!

There is a feeling of safety and

security in numbers

Do what is comfortable for you

Doesn't have to be a group

take a class

join a club

Key is -

Face to face social connection

improves quality of life

Take Home message

• Solutions

Social Support is key to QOL

Face-to-face – most effective

Social support will change long term outcomes

• Family, friends and HCP’s need to provide

• Support, Knowledge, and Compassion

AYU https://www.youtube.com/watch?v=t39LWNDOAYU

Thank you !

QOL score by demographics

Demographic Characteristic n CD-QOL Score

p Mean (SD)

Gender 0.25 Female 1857 68.8 (16.49) Male 270 69.7 (17.35) Age < 0.0001 18 - 25 170 65.0 (17.13) 26 - 35 326 65.9 (16.88) 36 - 55 897 67.3 (16.30) 56 - 65 446 70.8 (15.99) > 65 282 76.8 (15.01) Level of education 0.0009 High school 387 68.1 (17.83) Technical

176 67.0 (18.13) /vocational 2 years of college 419 68.0 (16.86) 4 years of college 641 68.5 (16.42) Advanced degree 494 71.7 (14.72) Length of time since diagnosis < 0.0001 < 1/2 year 119 62.7 (18.35) 1/2 - 1 year 168 64.4 (14.72) 1 - 3 years 560 65.2 (16.36) > 3 years 1287 71.7 (16.19)