Acknowledgements. Illness Behavior A cognitive and behavioral phenomenon. Seeking medical care. Communicating pain to others

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1 Acknowledgements Parent Training to Address Pediatric Functional Abdominal Pain: A Researcher s Perspective Dr. Kim Swanson National Institutes of Health Rona L. Levy, MSW, PhD, MPH Professor and Director Behavioral Medicine Research Group University of Washington Seattle WA National Institute of Child Health and Human Development Illness Behavior A 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

2 Missing school Even how we think about illness! Illness Behavior in Gastrointestinal Disorders IBS Irritable 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 laboratory findings 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 Study I Methods Am J Gastroenterol 2000; 95, 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

3 Health care costs are higher for all problems as well as GI problems for children of IBS parents $ Outpatient Costs Case Control Levy RL, Am J Gastro % Health Care Visits Diarrhea Abdominal Any Pain GI visits Children of IBS parents Children on non-ibs parents 1235 Children of IBS patients make more healthcare visits overall than children of non-ibs parents 15 Children of IBS patients Children of parents not diagnosed with IBS 10 Number of visits 0 Ambulatory care visits for all causes Levy RL et al., Am J Gastroenterol Feb;95(2): Study II Methods Am J Gastroenterol 2004; 99(12) 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 Children of IBS parents (Case children) report more severe GI symptoms when interviewed separately from their mothers. Control Case Control Case Child Report of Symptoms Parent Report of Symptoms

4 How each of us explains pain/any medical phenomenon is influenced by several factors Biopsychosocial Approach Social Gender Childhood Biology Biology Progression of Research Program Can genetics explain these observations? What is the etiology of this relationship? There is a relationship between parents and children s disability and illness behavior for functional gastrointestinal disorders. n Twin Study 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 Monozygotic Dizygotic 16.7% 6.7% Concordant (both twins reporting IBS) Discordant (only one twin reporting IBS) Levy, et al, Gastro

5 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 Interpretation Chance of dyzygotic twin DZ MZ having IBS if his/her dyzygotic twin does Chance of mother of twins having IBS if a twin has IBS 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. 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 Levy, et al.. Gastroenterology 2001 Progression of Research Program Familial Traits Is the decision to take a child to the clinic for abdominal pain related to maternal psychological distress? (Levy, et al., Archives of Pediatrics & Adolescent Medicine, 2006) Objective: Determine the relative contributions to consultation of: Is there evidence for the role of parent and child psychological traits on this relationship? What is the etiology of this relationship?- Social factors Is there a relationship between parents and children s disability and illness behavior for functional gastrointestinal disorders? *psychological symptoms of the mother, *psychological symptoms of the child, *severity of child abdominal pain and *family stress to child medical visits for abdominal pain

6 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 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, Summary Univariate Multivariate B (SE) OR p B (SE) OR p The decision to take a child to the clinic for abdominal pain is best predicted by: Maternal psychological distress (parent).27 (.09) Perceived pain severity (child).06 (.02) Child psychological distress (parent).04 (.02) Family stress (parent).04 (.03) (.10) (.02) the child s perceived pain severity and maternal psychological distress. 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 Progression of Research Program What are some mechanisms creating and maintaining this relationship? Is there evidence for the role of parent and child psychological traits on this relationship? Yes for parents What is the etiology of this relationship?- Social factors Is there a relationship between parents and children s disability and illness behavior for functional gastrointestinal disorders? Familial Mechanisms or processes contributing to Illness Behavior Modeling: Children imitate their parents When parents discuss their illness in certain ways, or stay home from 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

7 Modeling research question Reinforcement research question Partially answered by prior research Children of IBS parents do exhibit more illness behavior 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 absences School 0.5 absences for GI 3 months p <0.001 for parent status p <0.05 for illness reinforcement Low Middle High Low Middle High Parent Encouragement of Illness Behavior Parents without IBS R. Levy, et al,. Am J Gastro 2004; 99:2442 Parents with IBS Maternal Solicitousness (reinforcement) and Parental IBS related to medical clinic visits for stomachaches Maternal Solicitousness (reinforcement) and Parental IBS related to the child s perception of the seriousness of stomachaches Low Middle High Low Middle High Parent Encouragement of Illness Behavior Low Middle High Low Middle High Parent Encouragement of Illness Behavior Parents without IBS Parents with IBS Parents without IBS Parents with IBS

8 Progression of Research Program What are the best treatments? Experimental Research What are some mechanisms creating and maintaining this relationship?- Modeling and reinforcement Is there evidence for the role of parent and child psychological traits on this relationship?- Yes, for parents Can we reduce/eliminate/prevent pain and related disability when there is no known physiological cause for the pain? What is the etiology of this relationship?- Social factors There is a relationship between parents and children s disability and illness behavior for functional gastrointestinal disorders. Laboratory Setting Gastrointestinal discomfort induced by water loading Results: When parents are trained to attend to children s symptom talk, symptom talk is higher, especially in pain patients 25 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 Child Symptom Talk Pain Patients Well Children Pain Patients Well Children Pain Patients Distraction No Instruction Attention * Well Children Walker et al., 2006, Pain 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!

9 The Social Learning/Cognitive behavior Therapy Model: A Three-Legged Stool Changing parents responses to children Do not focus on or reward, symptoms/ illness behavior Relaxation Cognitions Social Learning: Modeling Reinforcement Encourage wellness X Selected 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 Parent cognitions 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

10 Sample questions 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 Study Time Line: Assessments: 1 week 3 mos. 6 mos. 1 year post tx. post tx. Post tx. Post tx. Baseline 3 Treatment Week 1 Week 2 Week 3 Sessions: Participants (200 children with FAP and their parents) Gender, % female Parents Children Age, M Publication of Results Levy, 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, Levy, R. L., et al. (2013). Twelve Month Follow-up of Cognitive Behavioral Therapy for Children with Functional Abdominal Pain, JAMA Pediatrics. 2.5 Current Pain* SLCBT ES Parental Solicitousness 12 month follow up Child current pain (FACES) Baseline End of tx 3mo post-tx 6mo post-tx Parental solicitousness SLCBT ES 0.0 Baseline End of tx 3mo post-tx 6mo post-tx 12mo post-tx *Levy et al., 2010

11 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 whether these techniques be delivered remotely to improve access Remote technology Challenges to computer-based deliver Training of staff Access to equipment Comfort with technology

12 One of the Biggest Challenges to telephone delivery Multitasking, distraction Can we treat the children by treating only the parents? 300 families Current Study Recruitment sites: Washington, Oregon and North Carolina 3 telephone sessions Random Assignment SLCBT SLCBT-Remote Information: Nutrition, Food Handling, etc. Only with the primary parent In process!

13 Thank you for your attention!