Developing a Tailored Asthma Management Tool for Urban Teenagers

1. Developing a Tailored Asthma Management Tool for Urban Teenagers Presented by: Christine LM Joseph, PhD Henry Ford Health System Department of Biostatistics & Research Epidemiology

3. NIH-NHLBI R01: Tailored asthma management for urban teenagers • Development • Unique features • Implementation • Screening methods & results • Evaluation • Results from randomized trial • Expansion and next steps

4. Background: Asthma • DEFINITION • Reversible airway obstruction • Airway hyperresponsiveness • Pulmonary inflammation

5. Background Estimated Asthma Death Rates (per 100,000) for ages 0-19 years, Detroit, 1999-2001* • A leading chronic disease in adolescence. • 15-19 yrs asthma death rates higher than that of younger groups. • Racial disparities in this age group apparent. • Few programs aimed at this population. *Uses 2000 as mid-year population for 1999-2001 estimates **CDC, NCHS , 1997-2001

6. Objective: • Design a web-based asthma management tool targeting urban teenagers • Implement program in Detroit high schools • Evaluate program using randomized effectiveness trial design

7. Essential elements • Innovation • Identification of the issues (negative behaviors and/or attitudes that preclude good asthma self-regulation) • Assistance in reducing or eliminating financial, cultural, and perceived barriers to effective asthma self-regulation • Theory – based • Address concerns on an individual basis

8. Tailoring • Alternative to offering generic support to variety of specific motives/needs of individuals • Employs interactive, diagnostic elements of a clinical encounter + dissemination potential of mass media • Produce higher change rate than more generic approaches

9. Tailoring (continued) Definition “Assessment and provision of feedback based on information that is known or hypothesized to be most relevant for each individual participant of a program” Personalized (tailored) messages Algorithm (Expert System) Individual level characteristics • Feedback • Normative • Ipsative

10. Development • Identify asthma management behaviors key to reducing morbidity • Anti-inflammatory or controller medication adherence • Having a rescue (β-agonist) inhaler nearby • Smoking cessation/reduction • Identify appropriate models (Health Belief Model, Transtheoretical Model, etc.) • Identify barriers and benefits to behavior change • Develop messages, scenarios, etc. • Build logic model or flowchart

11. Development: Context and message sources • Context: • Urban environment • Message sources: • Normative: Gender-specific character • Formative: Radio DJ • Program vehicle: • Computer • Web-based

12. Developing messages • Benefits (You can expect this to happen if you do this….) • Barriers (If this prevents you from making a change, try this…) • Risk summaries (Doing well in this area, but this area needs attention..) • Perceived vs actual risk (Your asthma seems worse than you think…) • Action messages (You’ve decided to do a, b, and c…) • Good bye messages (Work on/think about a, b, c…and see you next time....)

13. 1 • Log-in • Intro to program • Identify behavior status Intervention flowchart Initial screening questions: Smoking, med adh, inhaler Follow-up screening questions: recent symptoms, functional status Medication use instructions Login screen Intro sequence Identify risk behavior to change Summary of risks and asthma counselor referrals if necessary Assess desire & motivation to change If motivated to change If 1+ risks Address barriers to change • 2 • Summarize risk behaviors • Assess motivation to change • No? Benefits of change & compare risk If no desire to change Checklist of smoking barriers: #1: Coping/affect regulation #2: Overcoming social benefits #3:Resisting peer pressure #4: Dealing with cravings #5: Fear of weight gain Checklist of Med. Ad. barriers: #1: Belief meds are unnecessary #2: Feeling weak/dependent #3:Fear of overdose #4: Too busy #5: Frequent change of residence #6: Forgetfulness #7:Lack of symptoms #8:Experience no immediate effect #9: Complexity of regimen Checklist of inhaler barriers: #1:No where to carry #2: Overconfidence #3: Negative social impact If no risks Depression screening Obtain feedback on how to help other teens with asthma high Refer to Asthma counselor • 3 • Select behavior • Identify barriers to behavior change • Receive tailored messages If many Assess severity & susceptibility Summarize recent asthma symptoms Refer to Asthma counselor Scenarios for all Relevant barriers Scenarios for all Relevant barriers Scenarios for all Relevant barriers Message: compare perceived risk to actual risk Triggers checklist Responses for all relevant barriers Responses for all relevant barriers Responses for all relevant barriers Message: advice on avoiding triggers (including ETS) Select benefit/value (options vary based on behavioral risks)* • 4 • Summarize • Action plan • Good-bye message Summarize benefits Summarize benefits Summarize benefits Message related benefit/value to behavior change Message: Good bye Action Plan & Good bye Message Action Plan & Good bye Message Action Plan & Good bye Message *User may exit after Minimum of one benefit message Message: Good bye

14. Puff City Flowchart Current medications MDI/Inhaler use Suggestions for peers Referrals Scenarios Trigger avoidance

15. Development: Scenarios Go ahead and take the cigarette and pretend to smoke it. Sonja has finally made it on the drill squad at school. After practice they all go to McDonald's. After eating, all the girls' light up and begin smoking. Someone offers Sonja a cigarette. She has wanted to be a part of this group for a long time, but knows that if her asthma kicks up she's bound to miss practices and will be off the squad. Sonja should: Tell them she doesn't smoke and change the subject by paying a compliment to one of the girls. Threaten to turn them all in for underage smoking. Say nothing, then go to the bathroom and use her rescue inhaler. Decide she'll just smoke one. Quit the drill squad. Deliver a sermon on the evils of smoking. These girls are obviously tripping.

16. Hypothesis for randomized trial Morbidity Behavior Reductions in: ED* visits Hospitalizations Symptom-Days Restricted Activity Etc. Controller medication adherence Inhaler nearby Quality of Life Web-based, tailored asthma management tool Smoking cessation/ reduction *Emergency Department 22

17. Overview of randomized trial Identify and enroll eligible students Fall 2003 Winter 2004 Fall 2004 Fall 2005 Parent Telephone Interview Baseline Survey Treatment Control Asthma Counselor Asthma Counselor Tailored Sessions 1-4 Generic Sessions 1-4 180 days 180 days 6, 9 month Follow-up 6, 9 month Follow-up 12 month Follow-up Parent Telephone Follow-up 12 month Follow-up P:\cjoseph1\text\teens\revtimeline.doc

18. Implementation: Screening process NOTIFICATION LTRS (9-11TH) FORMS WITH STUDENT IDENTIFIERS GIVEN TO ENGLISH TEACHERS DPS RES & EVAL APPROVAL ELIGIBILITY ALGORITHM ADMINISTER FORMS DURING ENGLISH CLASS RELAY NUMBER ELIGIBLE SCAN AND APPLY CRITERIA RETURNED CONSENTS/ASSENTS ENTERED INTO HFHS DATABASE MATCHING NUMBER OF UNADDRESSED PACKETS PACKETS ADDRESSED AND MAILED CMT HFHS

19. Implementation: Participating schools • Cody, Ford, Mackenzie, Mumford, Northwestern, Redford • 99% African American • 52% eligible for federal lunch program (range 39-61%) • School zip code: 31% of persons < 18 yrs of age in poverty* * 2000 Census

20. 9-11th grade enrollment 6 high schools N=10,451 English class enrollment Fall 2003 n=7446 9-11th grade enrollment 6 high schools N=10,451 English class enrollment N=7446 Screened n=5967 Screened N=59671 Diagnosed Not Diagnosed Diagnosed with symptoms n=655 Not Diagnosed with symptoms n=550 Diagnosed without symptoms N=290 Diagnosed with symptoms N=655 Not Diagnosed with symptoms N=550 No Diagnosis of asthma No symptoms N=4473 Current symptoms N=1205 Returned consent form N=350 Baseline completed n=350 Consent Not returned N=855 Transferred N=14 Baseline complete (Assess study outcomes) N=314 Moved N=3 Baseline incomplete N=36 Randomized N=314 Randomized n=314 12th grade N=1 Other N=18 Control (Generic asthma websites) N=152 Treatment (Tailored web-based program) N=162 Treatment = Tailored N=162 Controls = Generic N=152 Computer Session 1 (Initial assessment of core behavior) Computer Sessions 2-4 (Repeat assessment of core behavior) 12 month follow up (Assess study outcomes) Joseph et al., Journal of Urban Health, 2007

21. Results: Contextual variables from baseline survey (n=350) • Uninsured 3.6 % * • Medicaid 43.0 % • Share medication with family/relatives 18.3 % • Rarely see same provider for asthma 36.2 % • History of asthma “lost” with new doctor 20.1 % • Teenager prays or meditates when under stress 41.0 % • Teenager potentially fulfill criteria for depression** 6.7 % • Caregiver potentially fulfills criteria for depression † 30.0 % * 6-9% 0-17 uninsured in Detroit Consolidated Metropolitan Statistical Area (1998) ** Academy of Pediatrics, National estimates 8.3% for adolescents †Modified CES-D scale, National estimates 12-15% for adults 24

22. Results: Treatment control comparisons at 12 months for targeted behavior *Adjusted for severity and school at enrollment using multinomial logistic regression Joseph et al., Am J Resp and Crit Care Med, 2007

23. Results: Treatment/control comparisons at 12 months for functional status and morbidity

24. NIH Renewal • Develop and pilot new recruitment strategies • Identify factors related to behavior change and apply to Puff City II • Address resistance and relapse using theory-based methods • Resistance: Apply Self-Determination Theory via Motivational Interviewing • Relapse: Attribution theory • Evaluate Puff City II using a randomized trial

25. 9-11th grade enrollment 6 high schools N=10,451 English class enrollment n=7446 9-11th grade enrollment 6 high schools N=10,451 English class enrollment N=7446 Screened n=5967 Screened N=59671 Diagnosed Not Diagnosed Diagnosed with symptoms n=655 Not Diagnosed with symptoms n=550 Diagnosed without symptoms N=290 Diagnosed with symptoms N=655 Not Diagnosed with symptoms N=550 No Diagnosis of asthma No symptoms N=4473 Current symptoms N=1205 Returned consent form N=350 Students with height, weight for BMI Consent Not returned N=855 Transferred N=14 Baseline complete (Assess study outcomes) N=314 Moved N=3 Baseline incomplete N=36 Randomized N=314 12th grade N=1 Other N=18 Control (Generic asthma websites) N=152 Treatment (Tailored web-based program) N=162 Computer Session 1 (Initial assessment of core behavior) Computer Sessions 2-4 (Repeat assessment of core behavior) 12 month follow up (Assess study outcomes) Joseph et al., Journal of Urban Health, 2007

28. Exploratory: Factors related to lack of behavior change

29. Rebellion score Responses: (Low) [1] Strongly disagree [2] Disagree [3] Neutral [4] Agree (High) [5] Strongly agree Tyc, et al. 2003. Journal of Pediatric Psychiatry

30. Exploratory: Distribution of rebellion scores for students } 25%

31. Exploratory: Distribution of family support scores by number of sessions finished

32. Exploratory: Rebellion scores and other variables * Spearman correlation

33. Summary

35. End.

36. Evaluation: Risk behavior definitions Morbidity and Functional Status Behavior ED visits Hospitalizations Symptom Days Restricted Activity Etc. Non-adherent = took med < 5 of last 7 days No inhaler nearby= carried inhaler < 5 of last 7 days Quality of Life Smoker = smoked > 1 cigarette In last 30 days (last 7 days) 22

37. Evaluation: Study definitions Report of diagnosis Symptoms and utilization • > 1 ED or hosp OR • > 2 doctor visits for symptoms OR • Awakened >1 nights in last 30 days OR • Needed meds for symptoms >4 days in last 30 days OR • Refilled inhaler > 1 in last 12 months Physician Diagnosis Current, diagnosed = + • Wheeze limiting speech, with exercise, dry cough • at night w/o cold in last 12 months AND • > 4 days of symptoms in last 30 days AND • >1 days of restricted activity AND • >1 nights awakened in past 30 days • OR • >1 attacks of wheeze in last 12 months AND • wheeze limiting speech, with exercise, dry cough • w/o cold in last 12 months NO Physician Diagnosis + = Undiagnosed

38. Implementation: Results of screening NOTIFICATION LTRS (9-11TH) N=10451 PRE-PRINTED FORMS DISTRIBUTED TO ENGLISH TEACHERS APPROVAL ELIGIBILITY ALGORITHM ADMINISTER FORMS DURING ENGLISH CLASS N=7446 CRITERIA APPLIED N=5963 Did not Complete form N=1483 No English Class N=3005 (28.8%) DIAGNOSIS N=944 (15.8%) NO DIAGNOSIS N=5019 SYMPTOMS N=654 (11%) NOT ELIGIBLE N=290 SYMPTOMS N=546 (9.2%) NOT ELIGIBLE N=4473

39. Comparison of participants to non-participants*

41. Obesity and Asthma • Immunologic • TNFα, IL-6, and IL-10 • Leptin associated with AHR and • Th2 cytokine production • Genetic • Candidate genes (TNF α, • β2andrenergic receptor) • candidate regions (5q, 6p, 11q, 12q) • Environmental • Diet, physical activity • ↑ allergen exposure due to • sedentary lifestyle • Development/fetal programming Obesity-Asthma Association • Hormonal • Insulin resistance • Sex hormone effect • Mechanical • Decrease in airway caliber • Smooth muscle latching • Gastroesophageal reflux • Pulmonary vascular congestion • Other • Restrictive physiology • Altered perception of dyspnea • Non-specific nature of wheeze