1 / 48

Wendy Landier, MSN, RN, CPNP Cynthia Hughes, EdD, RN Evelyn Calvillo, DNSc, RN

Understanding the Barriers and Facilitators to Adherence to Oral Chemotherapy in Hispanic Youth with A.L.L. Wendy Landier, MSN, RN, CPNP Cynthia Hughes, EdD, RN Evelyn Calvillo, DNSc, RN Debbie Brise ño- Toomey, MSN, RN, PNP Nancy Anderson, PhD, RN, FAAN Smita Bhatia, MD, MPH

wootton
Télécharger la présentation

Wendy Landier, MSN, RN, CPNP Cynthia Hughes, EdD, RN Evelyn Calvillo, DNSc, RN

An Image/Link below is provided (as is) to download presentation Download Policy: Content on the Website is provided to you AS IS for your information and personal use and may not be sold / licensed / shared on other websites without getting consent from its author. Content is provided to you AS IS for your information and personal use only. Download presentation by click this link. While downloading, if for some reason you are not able to download a presentation, the publisher may have deleted the file from their server. During download, if you can't get a presentation, the file might be deleted by the publisher.

E N D

Presentation Transcript


  1. Understanding the Barriers and Facilitators to Adherence to Oral Chemotherapy in Hispanic Youth with A.L.L. Wendy Landier, MSN, RN, CPNP Cynthia Hughes, EdD, RN Evelyn Calvillo, DNSc, RN Debbie Briseño-Toomey, MSN, RN, PNP Nancy Anderson, PhD, RN, FAAN Smita Bhatia, MD, MPH Leticia Dominguez, BA, CRA, City of Hope Alex Martinez, BA, CSULA Student Research Assistant Funded by: City of Hope-CSULA Cancer Collaborative Pilot Project Research Program - 5P20CA118775-02 (Kane)

  2. Background • Acute lymphoblastic leukemia (A.L.L.) is the most common childhood malignancy • Survival rates for A.L.L. have dramatically improved over the past 40 years American Cancer Society, 2006

  3. Hispanic Youth and A.L.L. • 5-year survival for Hispanic youth with A.L.L. is significantly lower than that of Caucasian youth • Represents a significant disparity in health outcomes for this minority group Blood 2002;100(6):1957-1964

  4. Ethnic Differences in Survival in Childhood A.L.L. *p<0.001

  5. Leukemia Relapse • Relapse of leukemia is still a significant problem in youth with A.L.L. • At least 15% will relapse • Most who relapse will not survive

  6. Therapy for A.L.L. • A.L.L. (unlike other pediatric cancers) requires a prolonged “maintenance” phase: • Self-/parent-administered oral chemotherapy • Taken at home over ~2 years • Significant relationship between systemic exposure to oral antimetabolite chemotherapy and EFS in childhood A.L.L. N Engl J Med 1990;323(1):17-21

  7. A.L.L. Therapy: Phases

  8. Goal = to “maintain” remission Usually antimetabolite-based Daily oral mercaptopurine (6-MP) Weekly oral methotrexate Monthly pulses of: IV Vincristine Oral glucocorticoid x 5 days (prednisone or dexamethasone) Therapy: Maintenance Phase

  9. Adherence to Therapy • Complex health behavior • Studied in a variety of chronic childhood diseases: • Diabetes • Asthma • Sickle cell disease • Cystic fibrosis • HIV • Cancer

  10. Adherence to Therapy “An active, intentional, and responsible process of care, in which the individual works to maintain his or her health, in close collaboration with healthcare personnel” J Clin Nurs 2000;9:5-12

  11. Non-Adherence to Therapy • “When the failure to comply is sufficient to interfere appreciably with achieving the therapeutic goal” J Pediatr Hematol Oncol, 2006, 12(28):816

  12. Measuring Adherence • Self-report (interviews, questionnaires) • Pill counts • Electronic pill monitoring • Drug assays

  13. Non-Adherence in Pediatric A.L.L.

  14. Non-Adherence to Therapy • Non-adherence may range from: • Complete non-adherence • Missed doses • Incorrect administration • Failure to heed instructions associated with taking medicine (e.g., do not take with dairy products) • All may potentially affect outcome

  15. 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

  16. Non-Adherence in A.L.L. • Clinically prevalent problem • Potentially modifiable • May increase risk of relapse • May contribute to disparity in survival rates among minority youth

  17. Current Study:Significance/Rationale • Understanding reasons for non-adherence necessary in order to develop effective interventions to improve adherence • There are currently no reports in literature of: • Interventions aimed at improving adherence in youth with A.L.L. • The potential influence of culture on adherence • This is despite the large number of studies that document non-adherence to oral chemotherapy in this population

  18. Current Study: Significance/Rationale • Address a significant “gap” in current knowledge:

  19. Current Study: Significance/Rationale • Address a significant “gap” in current knowledge: • Reasons for non-adherence in Hispanic youth with A.L.L. (including influence of acculturation) • Lay groundwork for identification and testing of culturally-relevant and acceptable interventions to improve adherence • Potentially contribute to reduction in current outcome disparity for Hispanic youth with A.L.L.

  20. 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

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

  22. Eligibility Criteria • Diagnosis of A.L.L. within the past 10 years at age 21 or younger • Treated at City of Hope • Hispanic or Caucasian • Received oral antimetabolite chemotherapy for at least one year during the maintenance phase of therapy • Has now completed therapy for A.L.L. • English or Spanish speaking • Interview participants must be age 12 years or older at time of study entry

  23. Study Phases: Year One • Individual interviews with: • 10 to 20 participants per group (4 groups total) Hispanic Patients Hispanic Parents/ Caregivers Caucasian Patients Caucasian Parents/ Caregivers Caucasians = Referent group Purpose: To develop a theoretical model and to identify potential interventional strategies

  24. Study Phases: Year Two • Focus groups with selected: • 6 to 10 participants/group; 2 – 4 planned groups Hispanic Patients Hispanic Parents/ Caregivers Caucasian Patients Caucasian Parents/ Caregivers Caucasians = Referent group Purpose: To validate the theoretical model and identification of potential interventional strategies

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

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

  27. Sampling – Data Saturation • Purposive (theoretical) sampling technique • Sample size determined by data saturation: • No new data are emerging • Major categories show considerable depth and breadth • Relationships to other categories have been made clear Corbin & Strauss, 2008

  28. Data gathering Analysis Analysis Data gathering Data gathering Analysis Analysis Sampling – Data Saturation Data gathering The analysis guides the sampling Data Saturation

  29. Data Collection • Training sessions prior to interviews and focus groups to assure consistency of data collection • Interviews and focus groups audiotaped • Transcribed verbatim • Translated and back-translated (if Spanish) • Investigator field notes

  30. Data Collection: Demographics

  31. Data Collection: Acculturation

  32. Data CollectionInterview: Sample Questions • “Tell me a little about your family. . .who lived at home when you were (your child was) in the maintenance phase of treatment for leukemia.” • “What was your (your child’s) experience like during this treatment phase?” • “What did you (your child) find difficult about this treatment?” • “Tell me about the pills that you (your child) took during this time.” • “Tell me about any problems you had (your child had) taking the pills or remembering to take the pills during the maintenance phase of treatment.”

  33. Data CollectionFocus Groups: Sample Questions • From our individual interviews with all of our participants, we learned that these (.......)were the most difficult (most helpful) things about taking your (your child’s) medications during treatment. How would you respond to this? • From our individual interviews with all of our participants, the following ideas about what would help you (your child) and your families to take medication during the maintenance phase of leukemia treatment were (……) How would you respond to this?

  34. Data Analysis • Ongoing throughout study • Periodic meetings of research team • Simultaneous data coding and analysis • Identification of key concepts/core variables • Guided by expertise of Dr. Nancy Anderson (UCLA School of Nursing) Corbin & Strauss, 2008

  35. Data Analysis • Qualitative software (Atlas.ti) to facilitate process • Allows data to be viewed from various perspectives • Allows relationships to be tested • Provides audit trail Corbin & Strauss, 2008

  36. Final End Products • A culturally appropriate, valid, and acceptable theoretical model to explain reasons for non-adherence to oral chemotherapy in Hispanic youth with A.L.L. • Culturally appropriate, valid, and acceptable interventional strategies aimed at improving adherence in this high-risk group

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

  38. Eligibility by Race n = 88

  39. Eligibility by Race 20/24 ineligible patients = s/p HCT* *HCT = Hematopoietic cell transplant

  40. Ineligibility Reasons

  41. Eligible Patients

  42. Interviews Completed to Date

  43. A brief look at some preliminary data . . .

  44. “Tell me about any problems you had taking or remembering to take the pills” “I have a theory that if you take all your meds at a certain time it’ll work for that certain time and then if you don’t take it at that certain time then it’ll work differently. I always had in mind, and it was always in my head bugging me, ‘oh, take your meds, take your meds’...knowing the fact that it was best for me and for my health, that’s really the reason why I always was – had time – to take my meds.” 19 year old Hispanic male with A.L.L.

  45. “What helped you take your medicines?” “I think the pill box ...especially helps, like having everything organized for you, definitely helps you remember, helps you know which ones to take.” 16 year old Hispanic female with A.L.L.

  46. “Do you have any other suggestions or ideas?” “Make them taste better (laughs), ‘cause like when you leave them in your mouth too long, it would disintegrate and taste so bad.” 16 year old Hispanic female with A.L.L.

  47. “What did you (your child) find difficult about this treatment?” “This is the problem, if you’re talking specifically about 6MP, I was told that she should not take it with milk products and that she should not take it with food...and at the time she didn’t have a whole lot of energy and she’d eat, and then she’d fall asleep...” Mother of 3-year-old Caucasian girl with A.L.L.

  48. “What did you (your child) find difficult about this treatment?” “...So I would wake her up, pull her out of bed, and she’d be tired, and it would take me a really long time to wake her up. And I’d put her in the kitchen and shake her and say ‘you’ve got to take this pill,’ and ‘No, no, I’m not taking it!’ And we’d go in this argument and I’d say ‘Well, you ate and I just can’t give it to you, and you had milk.’ And so finally we’d battle it out and she’d take it, put her right back to sleep and she’d fall asleep. And that was the worst part of my life, because I was up all night.” Mother of 3-year-old Caucasian girl with A.L.L.

More Related