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

66%

73%

62%

64%

66%

68%

70%

72%

74%

Hispanic CaucasianBlood 2002;100(6):1957-1964

Background

Arch Dis Child 2004 Aug; 89(8): 785-8Med Pediatr Oncol 1998 Feb; 30(2): 85-90Br J Cancer 1995 Oct; 72(4):1004-06

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

Therapy Begins

Therapy Ends

Phases of Therapy for Acute Lymphoblastic Leukemia

6 to 12 months

Interim Maintenance

Ind

uct

ion

Co

nso

lidat

ion

Inte

nsi

fica

tio

nMaintenance

18 to 30 months

Daily oral chemotherapy

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

Important factors for minority

populations

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 SchemaInterviews:

Hispanic cohort

Interviews:Caucasian cohort

PatientsParents/

Caregivers

PatientsParents/

Caregivers

Ongoing data analysis

Themes

Themes

Co

mp

are

Study Schema

Preliminary model to explain adherence Focus Groups:

Validate modelValidate potential

interventions

Fin

al M

od

el

Potential interventional strategies D

ata

an

aly

sis

Disseminate results

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

Progress Report

Interviews Completed to Date

0

2

4

6

8

10

12

Parent Patient

Hispanic

Caucasian

Total = 36

7 interviews conducted in Spanish (6 parents, 1 patient)

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

Annual household income - median $20-49,999 $75-99,999

# household members - median (range)

4(3-7)

4(1-7)

Single parent household 64% 22%

Educational level of parent - median High school diploma

2 year college degree

Prefers language other than English for healthcare interactions

45% 0%

Characteristics of 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)

Acculturation: Hispanic cohort

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

“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 1: Examples of themes associated with “Getting Sick”

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

“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 2: Examples of themes associated with “Figuring it Out”

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

“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 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

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

Examples of Themes Associated withAchieving/Maintaining Adherence

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

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

“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

Examples of Themes Associated with Non-Adherence

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

“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.

Questions?