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Wendy Landier, MSN, RN, CPNP (COH) Cynthia Hughes, EdD, RN (CSULA)

Understanding the Barriers and Facilitators to Adherence to Oral Chemotherapy in Hispanic Youth with A.L.L. Wendy Landier, MSN, RN, CPNP (COH) Cynthia Hughes, EdD, RN (CSULA) Evelyn Calvillo, DNSc, RN (CSULA) Deborah Brise ño- Toomey, MSN, RN, PNP (COH) Nancy Anderson, PhD, RN, FAAN (UCLA)

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Wendy Landier, MSN, RN, CPNP (COH) Cynthia Hughes, EdD, RN (CSULA)

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  1. Understanding the Barriers and Facilitators to Adherence to Oral Chemotherapy in Hispanic Youth with A.L.L. Wendy Landier, MSN, RN, CPNP (COH) Cynthia Hughes, EdD, RN (CSULA) Evelyn Calvillo, DNSc, RN (CSULA) Deborah Briseño-Toomey, MSN, RN, PNP (COH) Nancy Anderson, PhD, RN, FAAN (UCLA) Smita Bhatia, MD, MPH (COH) Leticia Dominguez, BA, CRA (COH) Alex Martinez, BA, Student Research Assistant (CSULA) Cara Hanby, CCRP, Research Coordinator (COH) Funded by: City of Hope-CSULA Cancer Collaborative Pilot Project Research Program - 5P20CA118775 (Kane)

  2. Background • Acute lymphoblastic leukemia (A.L.L.) is the most common childhood malignancy • 5-year survival for Hispanic children/youth with A.L.L. significantly lower than for Caucasian youth • Represents significant health disparity Blood 2002;100(6):1957-1964

  3. Background • Therapy for A.L.L. requires a prolonged “maintenance” phase • Daily oral chemotherapy • Administered at home for ~ 2 years • Non-adherence to oral chemotherapy is a clinically prevalent problem Arch Dis Child 2004 Aug; 89(8): 785-8 Med Pediatr Oncol 1998 Feb; 30(2): 85-90 Br J Cancer 1995 Oct; 72(4):1004-06

  4. Intensification Induction Consolidation Interim Maintenance Maintenance Phases of Therapy for Acute Lymphoblastic Leukemia Daily oral chemotherapy 6 to 12 months 18 to 30 months Therapy Begins Therapy Ends

  5. Adherence to Therapy • May be influenced by many factors: • Complexity of medication regimen • Duration of therapy • Medication side effects • Psychological and cognitive factors • Family structure/dynamics • Health beliefs • Cultural beliefs • Socioeconomic status • Communication with/trust in healthcare providers • May include language barriers

  6. Adherence to Therapy • May be influenced by many factors: • Complexity of medication regimen • Duration of therapy • Medication side effects • Psychological and cognitive factors • Family structure/dynamics • Health beliefs • Cultural beliefs • Socioeconomic status • Communication with/trust in healthcare providers • May include language barriers Important factors for minority populations

  7. Specific Aims • Develop and validate a grounded theory-based model to explain the reasons for non-adherence to oral maintenance chemotherapy in Hispanic youth with A.L.L. • Identify culturally-relevant and acceptable interventional strategies to improve adherence in this group

  8. Methods • Qualitative (inductive) • Grounded theory • Methods of Strauss & Corbin • Designed to examine the process of adherence (and hence the barriers and facilitators)

  9. Eligibility Criteria • Diagnosis of A.L.L. within the past 10 years at age 21 or younger (and parent/caregiver of patient meeting inclusion criteria) • Treated at City of Hope • Hispanic or Caucasian • Received at least one year of maintenance chemotherapy • Has now completed therapy for A.L.L. • English or Spanish speaking • > 12 years old to participate in interview (if <12, parent/caregiver interviewed alone)

  10. Themes Compare Ongoing data analysis Themes Study Schema Interviews: Hispanic cohort Patients Parents/ Caregivers Interviews: Caucasian cohort Patients Parents/ Caregivers

  11. Data analysis Disseminate results Study Schema Focus Groups: Validate model Validate potential interventions Preliminary model to explain adherence Final Model Potential interventional strategies

  12. Understanding the Barriers and Facilitators to Adherence to Oral Chemotherapy in Hispanic Youth with A.L.L. Progress Report

  13. Interviews Completed to Date Total = 36 7 interviews conducted in Spanish (6 parents, 1 patient)

  14. Characteristics of Cohort

  15. Characteristics of Cohort

  16. Acculturation: Hispanic cohort SCALE: Lowest level of acculturation = 12 Highest level of acculturation = 60 Hispanic J Behav Sci, 1987: 183-205

  17. Analysis:Initial Results

  18. Findings: Teens/Young Adults • Phases involved in process of becoming adherent: • Getting sick (leukemia diagnosis) • Figuring it out (becoming adherent) • Achieving/maintaining adherence

  19. Phase 1: Themes associated with“Getting Sick” • Lack of knowledge about leukemia and its treatment • Recognition that illness is life-threatening • Loss of control • Dealing with emotions

  20. Phase 1: Examples of themes associated with “Getting Sick” “You know, I mean – twelve years old – you’re not gonna know much about cancer. And it’s just like ‘Okay.’ You’ve heard of it, and you know, it’s just like, ‘What is it? How serious is this?’” - 19 year old Caucasian male diagnosed at age 12 • Lack of knowledge about leukemia and its treatment

  21. Phase 1: Examples of themes associated with “Getting Sick” “When I first got diagnosed I mean I heard ‘cancer’ and I got a little scared . . . just seeing people with cancer and some people dying – it could happen to me and stuff at a young age – so I got a little scared.”- 21 year old Hispanic male diagnosed at age 17 • Recognition that illness is life-threatening

  22. Phase 2: Themes associated with“Figuring it Out” • Learning about disease/treatment • Forming alliances • Taking an active role in treatment • Mastering specific skills (e.g., pill-swallowing, organization) • Overcoming challenges/barriers (e.g., side effects, forgetfulness, interference with normal activities) • Having sources of support

  23. Phase 2: Examples of themes associated with “Figuring it Out” • “And the way I’d take ‘em was . . . every day at a certain time. So I would never pass that time.” • - 19 year old Hispanic male diagnosed at age 13 • Mastering specific skills: Organization

  24. Phase 2: Examples of themes associated with “Figuring it Out” “Cuz a lot of them tasted really nasty, and you would get this . . . metallic aftertaste, and it was the grossest thing ever. And so the gel caps really helped, because it takes the taste away and it’s easier to swallow.” - 18 year old Caucasian female diagnosed at age 11 • Overcoming challenges: Poor palatability of meds

  25. Phase 2: Examples of themes associated with “Figuring it Out” “All the encouragement from my friends and family and all that, cuz other than that I don’t think I would try. . . Cuz they kept me going and stuff saying that, you know, ‘You can do this,’ and ‘You got to get better,’ and stuff. So that really helped me a lot.” - 21 year old Hispanic male diagnosed at age 17 • Having sources of support

  26. Phase 3: Themes associated withAchieving/Maintaining Adherence • Delineation of roles/responsibilities (“teamwork”) • Parental/caregiver vigilance • Making mid-course corrections • Staying motivated/“thinking positive” • Getting back to normal • Personal growth

  27. Examples of Themes Associated withAchieving/Maintaining Adherence “Even if I didn’t forget . . . my mom would still always ask me no matter what, ‘Did you take your meds? Did you remember to take your meds?’” - 19 year old Hispanic male diagnosed at age 13 • Parental/caregiver vigilance

  28. Examples of Themes Associated withAchieving/Maintaining Adherence “When, you know - maintenance – things kind of start to like get back to normal little by little, by little, by little, by little . . . your hair starts to grow back and you start feeling and looking normal, and feel like yourself again.” - 23 year old Caucasian male diagnosed at age 15 • Getting back to normal

  29. Examples of Themes Associated withAchieving/Maintaining Adherence “When I was diagnosed . . . I was really just kind of like more materialistic and uh – just shallow. And then, you know – cancer slaps you in the face and kind of rearranges all your priorities.” - 23 year old Caucasian male diagnosed at age 15 • Personal growth

  30. Themes associated withNon-Adherence • Not overcoming barriers • Lack of teamwork/alliances • Not understanding disease • Not understanding treatment • Taking a passive role in treatment • Lack of organization • Rebellion

  31. Examples of ThemesAssociated with Non-Adherence “Then after a while on and off I just had fits where I just didn’t want to take them, or just get tired of it all . . . I was just so annoyed, and just all-out pissed with the situation.” - 23 year old Hispanic male diagnosed at age 18 • Rebellion

  32. Examples of Themes Associated with Non-Adherence “Sometimes I didn’t take ‘em I just – cuz I would get sick. And I would just wait a couple days and then take the rest of them.” - 21 year old Hispanic male diagnosed at age 17 • Not overcoming barriers: Side effects “I would take it and the following week I wouldn’t take it, I would forget. But since I didn’t like them, sometimes I would take them - or if not, I would throw them away.” - 15 year old Hispanic female diagnosed at age 12 • Lack of organization; Rebellion

  33. Theory: Working Model “Making the Connection” • Evident in all interviews with youth who described medication-taking behaviors most consistent with adherence • Not evident in interviews with youth who described medication-taking behaviors less consistent with adherence, despite the fact that all clearly articulated the life-threatening nature of their illness Recognition of association between taking oral chemotherapy and control/cure of leukemia

  34. “Making the Connection” “I knew that if I wanted to get better and I knew I was – that I had to take these . . . There was no way around it. I mean even if you felt fine I took them. And if you like felt sick you knew you had to take them.” - 19 year old Caucasian male diagnosed at age 12

  35. Theory: Working Model

  36. Plans: Year 2 • Conduct focus groups • Validate theory • Identify culturally sensitive interventional strategies • Finalize data analysis • Present at scientific meetings • Prepare and submit manuscripts • Grant submission (potential)

  37. Study Timeline: Year 1

  38. Study Timeline: Year 2

  39. Adherence to Oral Chemotherapy in Hispanic Youth with A.L.L. Questions?

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