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)
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
74%
73%
72%
70%
68%
66%
66%
64%
62%
Hispanic
Caucasian
Blood 2002;100(6):1957-1964
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
Phases of Therapy for
Acute Lymphoblastic Leukemia
Intensification
Consolidation
Induction
Daily oral
chemotherapy
Interim
Maintenance
6 to 12 months
Therapy
Begins
Maintenance
18 to 30 months
Therapy
Ends
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
Important
factors for
Medication side effects
minority
Psychological and cognitive factors
populations
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 theorybased model to explain the reasons for nonadherence 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
Interviews:
Hispanic cohort
Parents/
Caregivers
Compare
Patients
Themes
Ongoing data analysis
Interviews:
Caucasian cohort
Patients
Parents/
Caregivers
Themes
Potential interventional
strategies
Focus Groups:
Validate model
Validate potential
interventions
Disseminate results
Final Model
Preliminary model to
explain adherence
Data analysis
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
12
10
8
Hispanic
Caucasian
6
4
2
Total = 36
0
Parent
Patient
7 interviews conducted in Spanish
(6 parents, 1 patient)
Characteristics of Cohort
Characteristic
Hispanic
Caucasian
Entire
cohort
Patients participating (#)
12
(57%)
9
(43%)
21
(100%)
Male
7
(33%)
5
(24%)
12
(57%)
Current age - median
(range)
15.5
(6-23)
16
(6-23)
16
(6-23)
Age at diagnosis - median
(range)
12
(3-18)
9
(2-15)
11
(2-18)
Current age of parent - median
(range)
42
(34-58)
46
(37-60)
45
(34-60)
Characteristics of Cohort
Characteristic
Hispanic
Caucasian
$20-49,999
$75-99,999
# household members - median
(range)
4
(3-7)
4
(1-7)
Single parent household
64%
22%
High school
diploma
2 year college
degree
45%
0%
Annual household income - median
Educational level of parent - median
Prefers language other than
English for healthcare interactions
Acculturation: Hispanic cohort
Characteristic
Parents
Patients
Entire Hispanic cohort - mean
(range)
35
(14-56)
44.1
(29-52)
Spanish interview - mean
(range)
23.2
(14-33)
29
(29)
SCALE:
Lowest level of acculturation = 12
Highest level of acculturation = 60
Hispanic J Behav Sci, 1987: 183-205
Analysis:
Initial Results
Findings: Teens/Young Adults

Phases involved in process of becoming
adherent:
1. Getting sick (leukemia diagnosis)
2. Figuring it out (becoming adherent)
3. Achieving/maintaining adherence
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
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
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
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
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
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
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
Phase 3: Themes associated with
Achieving/Maintaining Adherence






Delineation of roles/responsibilities
(“teamwork”)
Parental/caregiver vigilance
Making mid-course corrections
Staying motivated/“thinking positive”
Getting back to normal
Personal growth
Examples of Themes Associated with
Achieving/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
Examples of Themes Associated with
Achieving/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
Examples of Themes Associated with
Achieving/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
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
“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
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
Theory: Working Model
“Making the Connection”
Recognition of association between taking oral
chemotherapy and control/cure of leukemia


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
“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
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.