outline_expanded.htm

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–o-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)

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

Background
Therapy for A.L.L. requires a prolonged ÒmaintenanceÓ phase
Daily oral chemotherapy
Administered at home for ~ 2 years
Non-adherence to oral chemotherapy is a clinically prevalent problem

Slide 4
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

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

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

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

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)

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

Interviews Completed to Date
Characteristics of Cohort
Characteristics of Cohort
Acculturation: Hispanic cohort
Slide 17
Findings: Teens/Young Adults
Phases involved in process of becoming adherent:
Getting sick (leukemia diagnosis)
Figuring it out (becoming adherent)
Achieving/maintaining adherence

Phase 1: Themes associated with
ÒGetting SickÓ
Lack of knowledge about leukemia and its treatment
Recognition that illness is life-threatening
Loss of control
Dealing with emotions

Phase 1: Examples of themes associated with ÒGetting SickÓ
Phase 1: Examples of themes associated with ÒGetting SickÓ
Phase 2: Themes associated with
ÒFiguring it OutÓ
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

Phase 2: Examples of themes associated with ÒFiguring it OutÓ
Phase 2: Examples of themes associated with ÒFiguring it OutÓ
Phase 2: Examples of themes associated with ÒFiguring it OutÓ
Phase 3: Themes associated with
Achieving/Maintaining Adherence
Delineation of roles/responsibilities (ÒteamworkÓ)
Parental/caregiver vigilance
Making mid-course corrections
Staying motivated/Òthinking positiveÓ
Getting back to normal
Personal growth

Examples of Themes Associated with
Achieving/Maintaining Adherence
Examples of Themes Associated with
Achieving/Maintaining Adherence
Examples of Themes Associated with
Achieving/Maintaining Adherence
Themes associated with
Non-Adherence
Not overcoming barriers
Lack of teamwork/alliances
Not understanding disease
Not understanding treatment
Taking a passive role in treatment
Lack of organization
Rebellion

Examples of Themes
Associated with Non-Adherence
Examples of Themes
Associated with Non-Adherence
Theory: Working Model ÒMaking the ConnectionÓ
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

ÒMaking the ConnectionÓ
Theory: Working Model
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)

Study Timeline: Year 1
Study Timeline: Year 2
Adherence to Oral Chemotherapy in Hispanic Youth with A.L.L.