Parent Training to Address Pediatric Functional Abdominal Pain: A Researcher’s Perspective

Rona L. Levy, MSW, PhD, MPHProfessor and Director

Behavioral Medicine Research GroupUniversity of Washington

Seattle WA

Acknowledgements

• Dr. Kim Swanson

• National Institutes of Health

– National Institute of Child Health and Human Development

Illness BehaviorA cognitive and behavioral phenomenon

• Illness behavior refers to the ways people perceive and react to somatic sensations that may or may not be associated with disease.

• Illness Behavior is on a continuum ranging from denial to over-reaction.

• Research on Illness Behavior focuses on excessive somatic complaints and disability.

Some examples of illness behavior include…

• Noticing physiological sensations• Defining a sensation as “pain”, “bloating”, etc.• Having thoughts about the sensation such as “I

have a serious illness”, “I am going to be unable to function today”, etc.

• And engaging in illness behaviors…

Communicating pain to others Seeking medical care

Missing schoolEven how we think about illness!

Illness Behavior

in Gastrointestinal Disorders

IBSIrritable bowel syndrome (IBS): Frequent episodes of abdominal pain or discomfort relieved with defecation and/or associated with a change in frequency of stool and/or a change in form (appearance) of stool...

with NO physical or laboratoryfindings which could explain the symptoms.

Similar disorders in children: IBS,functional/recurrent abdominal pain

Debilitating stomach pain runs in families

15-37% of relatives of IBS patients affected with IBS

4-16% of controls

Familial patterns:Children of IBS patients

• Cases: 631 children of parents with IBS (fathers included)

• Controls: 646 children of parents without IBS

• Number and type of clinic visits from automated medical records

Study I MethodsAm J Gastroenterol 2000; 95, 451-456.

00

500500

10001000

15001500

20002000

CaseCase ControlControl00

55

1010

1515

2020

2525

DiarrheaDiarrhea AbdominalPain

AbdominalPain

AnyGI visits

AnyGI visits

%%$$

Children of IBS parentsChildren on non-IBS parentsChildren of IBS parentsChildren on non-IBS parents

Outpatient Costs Health Care VisitsOutpatient Costs Health Care Visits

Levy RL, Am J Gastro. 2000Levy RL, Am J Gastro. 2000 1235

Health care costs are higher for all problems as well as GI problems for children of IBS parents

Children of IBS patientsChildren of IBS patients

Children of parentsnot diagnosed with IBSChildren of parentsnot diagnosed with IBS

Levy RL et al., Am J Gastroenterol. 2000 Feb;95(2):340Levy RL et al., Am J Gastroenterol. 2000 Levy RL et al., Am J Gastroenterol. 2000

Feb;95(2):340Feb;95(2):340

Children of IBS patients make more healthcare Children of IBS patients make more healthcare visits overall than children of nonvisits overall than children of non--IBS parentsIBS parents

00

55

1010

1515

Number of visitsNumber Number of visitsof visits

Ambulatory care visitsfor all causes

Ambulatory care visitsAmbulatory care visitsfor all causesfor all causes

44

Study II MethodsAm J Gastroenterol 2004; 99(12) 2442-2451

• Children were interviewed separately from parents re symptoms

• 296 children of 208 mothers with IBS

• 335 children of 241 mothers without IBS

• Visits and health care costs from automated records

Control Case Control CaseChild Report of Symptoms Parent Report of Symptoms

Children of IBS parents (Case children) report more severe GI symptoms

when interviewed separately from their mothers.

How each of us explains pain/any medical phenomenon is influenced by several factors

Biology

Social

Gender

ChildhoodBiology

Biopsychosocial Approach

There is a relationship between parents’ and children’s disability and illness behavior for functional gastrointestinal disorders.

What is the etiology of this relationship?

Progression of Research Program Can genetics explain these observations?

Twin Study

n Aim of our twin study: Compare the concordance of IBS in monozygotic (MZ) and dizygotic (DZ) twin pairs to assess heritability

Familial Genetics:Concordance Among Twins

Familial Genetics:Concordance Among TwinsMonozygoticMonozygotic DizygoticDizygotic

Concordant(both twins reporting IBS)

Concordant(both twins reporting IBS)

Discordant(only one twin reporting IBS)

Discordant(only one twin reporting IBS)

Levy, et al, Gastro. 2001Levy, et al, Gastro. 2001 1236

16.7% 6.7%

Partial Conclusion

There is a genetic contribution to IBS (p=.03)

Having a MZ twin with IBS increases one’s risk of developing IBS by about 9%

What we did next that was novel

Investigate possible social learning effects by comparing the prevalence of IBS in mothers of twins with IBS to the prevalence of IBS in children who have a MZ-twin with IBS

Evidence for Social Learning more powerful than genetics

Evidence for Social Learning more powerful than genetics

Rates of IBS among dyzygotic twins are significantly less (p<.001) than rates of IBS in mothers of twins. If genetics, rather than learning, were dominant we would expect these figures to be comparable.

Rates of IBS among dyzygotic twins are significantly less (p<.001) than rates of IBS in mothers of twins. If genetics, rather than learning, were dominant we would expect these figures to be comparable.

Levy, et al.. Gastroenterology 2001 Levy, et al.. Gastroenterology 2001

Chance of dyzygotic twin having IBS if his/her dyzygotic twin does

DZ MZChance of mother of twins

having IBS if a twin has IBS

Interpretation

While genes appear to contribute to the manifestation of IBS, at least in this sample there is evidence for a stronger social learning component to its manifestation

Is there a relationship between parents’ and children’s disability and illness behavior for functional gastrointestinal disorders?

What is the etiology of this relationship?- Social factors

Progression of Research Program

Is there evidence for the role of parent and child psychological traits on this relationship?

Is the decision to take a child to the clinic for abdominal painrelated to maternal psychological distress?

(Levy, et al., Archives of Pediatrics & Adolescent Medicine, 2006)

*psychological symptoms of the mother,*psychological symptoms of the child,*severity of child abdominal pain and *family stress

Familial Traits

Objective: Determine the relative contributions to consultation of:

to child medical visits for abdominal pain

Methodology

• Design: Observational• Setting: HMO• Participants: 275 mothers of 334 children who had

abdominal pain in the past two weeks, as per child self-report

• Measures: Mothers completed questionnaires about themselves (SCL-90R) and their children (school absences, medication use, Child Behavior Checklist). Children completed the Pain Beliefs Questionnaire to assess perceived pain severity

Results

• 39 children taken to the clinic for GI symptoms at least once in the past 3 months (consulters) whereas 295 were non-consulters.

• Although children who consulted physicians had significantly more psychological symptoms, this was not a significant predictor of consultation after adjusting for maternal psychological symptoms.

• Family stress did not predict consultation.

Logistic regressions for GI consulting behavior

Univariate Multivariate

B (SE) OR p B (SE) OR p

Maternal psychological distress (parent)

.27 (.09)

1.31 .003 .26 (.10) 1.30 .006

Perceived pain severity (child) .06 (.02)

1.06 .000 .06 (.02) 1.06 .000

Child psychological distress (parent) .04 (.02)

1.04 .018 --- --- ---

Family stress (parent) .04 (.03)

1.04 .146 --- --- ---

Maternal psychological distress = sum of Anxiety, Depression, and Somatization subscales of the SCL90-R; Perceived pain severity = Pain Beliefs Questionnaire total severity score; child psychological distress = Achenbach Child Behavior Checklist Internalizing Scale; family stress = Family Inventory of Life Events.Predictors associated with the outcome at the p < .05 level in univariate models were entered into a multivariate model

Reference: Levy, RL, Langer, SL, Walker, LS, Feld, LD, Whitehead, WE. (2006). Relationship between the decision to take a child to the clinic for abdominal pain and maternal psychological distress. Archives of Pediatrics & Adolescent Medicine. Archives of Pediatrics & Adolescent Medicine, Sept: 160, 961-965.

Summary

The decision to take a child to the clinic for abdominal pain is best predicted by:

• the child’s perceived pain severity and

• maternal psychological distress.

Is there a relationship between parents’ and children’s disability and illness behavior for functional gastrointestinal disorders?

What is the etiology of this relationship?- Social factors

What are some mechanisms creating and maintaining this relationship?

Progression of Research Program

Is there evidence for the role of parent and child psychological traits on this relationship? –Yes for parents

Familial Mechanisms or processescontributing to Illness Behavior

• Modeling: Children imitate their parentsWhen parents discuss their illness in certain ways, or stay homefrom work and expect special consideration (e.g., help with chores), children become hypervigilant – they notice more – their somatic sensations, report more symptoms, and want to stay home from school

• Reinforcement: Behaviors that are rewarded are repeated When parents pay special attention or give gifts to a child who complains of a stomachache, the complaints are likely to increase

Modeling research question

• Partially answered by prior research

• Children of IBS parents do exhibit more illness behavior

Reinforcement research question

• Is the way parents respond to children’s somatic complaints related to the magnitude of these complaints?

• Specifically, do children of parents who are more solicitous/reinforcing experience more school absenses, clinic visits, and severe symptoms?

Adult Response to Child Symptoms scale *(ARCS)

Sample Questions:When your child has a stomachache or abdominal pain,

how often do you…(Once in a while...Sometimes...Never...Often...Always)

• Ask your child what you can do to help?• Express irritation or frustration with your child?• Do your child’s chores or pick up your child’s

things instead of making him/her do it?• Try to get your child to rest?

*Walker et al, 2002

Maternal Solicitousness (reinforcement) and School absencesMaternal Solicitousness (reinforcement) and School absences

School absences

for GI3 months

School absences

for GI3 months

R. Levy, et al,. Am J Gastro 2004; 99:2442R. Levy, et al,. Am J Gastro 2004; 99:24420.7

50.7

5

0.50.5

0.25

0.25

00LowLow MiddleMiddle HighHigh

Parents without IBS

Parents without IBS

LowLow MiddleMiddle HighHigh

Parents with IBSParents with IBS

p <0.001 for parent statusp <0.05 for illness

reinforcement

p <0.001 for parent statusp <0.05 for illness

reinforcement

Parent Encouragement of Illness Behavior

Low Middle High Low Middle High

Maternal Solicitousness (reinforcement) and Parental IBS related to medical clinic visits for stomachaches

Parents without IBS Parents with IBS

Parent Encouragement of Illness Behavior Low Middle High Low Middle HighParent Encouragement of Illness Behavior

Maternal Solicitousness (reinforcement) and Parental IBS related to the child’s perception of the seriousness of stomachaches

Parents without IBS Parents with IBS

There is a relationship between parents’ and children’s disability and illness behavior for functional gastrointestinal disorders.

What is the etiology of this relationship?- Social factors

What are some mechanisms creating and maintaining this relationship?-Modeling and reinforcement

Progression of Research Program

What are the best treatments?

Is there evidence for the role of parent and child psychological traits on this relationship?-Yes, for parents

Experimental Research

Can we reduce/eliminate/prevent pain and related disability when there is no known

physiological cause for the pain ?

Laboratory SettingGastrointestinal discomfort induced by water loading

Participants:• Child abdominal pain

patients and their parents

• Matched well-child controls and their parents

3 Conditions of Instructions to parents• No instructions

• Distract Child

• Pay attention to symptom complaints 0

5

10

15

20

25

Distraction No Instruction Attention

Chi

ld S

ympt

om T

alk

*

Pain Patients

PainPatients

PainPatients

WellChildren

WellChildren

WellChildren

Walker et al., 2006, Pain

Results: When parents are trained to attend to children’s symptom talk, symptom talk is higher, especially in pain patients

Does this work in real life –Can we take this into the clinic and

alter children’s illness behavior by teaching parents and children to respond differently?

Participants:

200 children referred for functional abdominal pain and their parents (parents: 91% female; mean age = 43.8 years; children: 71% female, mean age = 11.4 years)

Randomized Controlled Trial with Two Conditions

• SLCBT: Social Learning and Cognitive Behavior Therapy (working with children and parents)– Parental response– Relaxation– Cognitive Behavior Therapy

• ES - Education/Support: Controlling for therapist time and attention, with content on the GI system, food pyramid, food labeling

Three Sessions!

The Social Learning/Cognitive behavior Therapy Model:A Three-Legged Stool

RelaxationSocial Learning:

ModelingReinforcement

Cognitions

Changing parents’ responses to children• Do not focus on or reward, symptoms/

“illness behavior”

Encourage wellness

XSelected Measures

– GI Symptom Index (a subscale of the Child Somatization Inventory)

– Pain Scale comprised of 6 line drawings of faces – Functional Disability Inventory (FDI)– Pain Response Inventory (PRI; including

catastrophizing subscale)– Multidimensional Anxiety Scale for Children (MASC)

Parent responses

Adult’s Responses to Children’s Symptoms (Van Slyke & Walker, 2006; Walker, Levy, & Whitehead, 2006)Solicitousness subscale•15 items •Assesses parental solicitousness to child’s abdominal pain episodes

Pain Belief Beliefs Questionnaire (Walker, et al., 2008; Walker, Smith, Garber, & Claar, 2005)

Perceived pain threat subscale•20 items•Assesses perceived condition seriousness, duration, and frequency, as well as pain episode intensity and duration

Parent cognitions

Pain Belief Beliefs Questionnaire•“My child’s stomachaches mean he/she has a serious illness”•“My child will always have stomachaches”•“My child’s stomachaches hurt a whole lot”•“My child’s stomachaches go on forever”•Rated on a 0 (not at all true) to 4 (very true) scale

Sample questions

Study Time Line:

Base-line

Assessments: 1 week 3 mos. 6 mos. 1 yearpost tx. post tx. Post tx. Post tx.

3 Treatment Week 1 Week 2 Week 3Sessions:

Participants(200 children with FAP and their parents)

Parents Children

Gender, % female

91 71

Age, M 43.8 11.4

Publication of ResultsLevy, R. L., et al. (2010). Cognitive-behavioral therapy for children with functional abdominal pain and their parents decreases pain and other symptoms, American Journal of Gastroenterology, 105, 946-56

Levy, R. L., et al. (2013). Twelve Month Follow-up of Cognitive Behavioral Therapy for Children with Functional Abdominal Pain, JAMA Pediatrics.

Baseline End of tx 3mo post-tx 6mo post-tx0.0

0.5

1.0

1.5

2.0

2.5

Chi

ld c

urre

nt p

ain

(FA

CE

S)

SLCBT ES

Current Pain*

*Levy et al., 2010

Parental Solicitousness – 12 month follow up

Baseline End of tx 3mo post-tx 6mo post-tx 12mo post-tx0.0

0.2

0.4

0.6

0.8

1.0

1.2

1.4

Par

enta

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icito

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SLCBT ES

Mediational Analyses

Changes in several outcomes, including disability

were significantly mediated by changes in

*parent-reported beliefs about their child’s pain and

*parent solicitousness in response to children’s pain behaviors.

What does this mean?• The statistical analysis asked the question:

• What variables that we tried to change by our intervention seemed to be associated with changes in our outcomes?

• The answer was “a change in the way parents reacted to, and their beliefs about their child’s abdominal pain.”

Summary of our observational and experimental findings

• Children’s illness behavior/reported pain is related to their parents’- and learning seems to account for much of this phenomenon

• Children and adult illness behavior/reported pain is related to environmental response-especially how parents respond

• In children and adults, reported pain and other symptoms can be altered by changing parent and child responses to illness behavior.

• Outcomes were mediated by changes in parent-reported beliefs about their child’s pain and parent solicitousness

Current Experimental Research Questions

Can treatment for children’s pain work if we only treat parents?

Also, we were interested in whetherthese techniques be delivered remotelyto improve access

Remote technology

• Training of staff

• Access to equipment

• Comfort with technology

Challenges to computer-based deliver

One of the Biggest Challenges to telephone delivery

Multitasking, distraction

Can we treat the childrenby treating only the parents?

Current Study

• 300 families

• Recruitment sites: Washington, Oregon and North Carolina

• 3 telephone sessions

• Only with the primary parent

Random Assignment

• SLCBT

• SLCBT-Remote

• Information: Nutrition, Food Handling, etc.

In process!

Thank you for your attention!