Purpose: Lack of adherence to therapy is well known in youth with ALL. Through grounded theory methodology, we aimed to build a theory describing the process of adherence to oral chemotherapy, and to identify barriers and facilitators to adherence. As Hispanics could potentially be a vulnerable sub-group due to sociocultural barriers, we specifically sought to explore the process of adherence and to identify barriers and facilitators in Hispanic (HISP) and non-Hispanic white (NHW) youth with ALL to lay the foundation for development of culturally sensitive interventions.

Procedures: Qualitative, grounded theory methodology guided study conduct and analysis. HISP and NHW patients with ALL diagnosed at ≤21 years (yr) were interviewed; a separate interview was conducted with the parent. NHW patients and parents served as the referent group. Patients <12 yr at study participation were not interviewed. 35 semi-structured interviews were carried out (Patients: 8 HISP; 7 NHW; Parents: 11 HISP; 9 NHW). 7 interviews were conducted in Spanish. Data were coded and analyzed concurrently with data collection using the constant comparative method. Themes were identified and a working model explaining the process of adherence was developed.

Summary of Findings: Median age of patients was 9.9 yr (2.7 – 18.9) at diagnosis and 16 yr (6 – 23) at study participation; 53% were males. Median age of parents at study participation was 45 yrs (34–60). “Making the connection” was identified as the working model to explain the process of adherence to oral chemotherapy in youth with ALL. Youth who demonstrated an understanding of the association between taking oral chemotherapy and control/cure of their leukemia described medication-taking behaviors and patterns most consistent with adherence to their prescribed regimen. Youth who lacked this understanding described medication-taking behaviors and patterns less consistent with adherence despite the fact that they all clearly articulated the life-threatening nature of their illness. Three stages were identified in the process of adherence: Getting sick, Figuring it out, and Being adherent/Maintaining adherence. Themes associated with adherence included Forming alliances, Taking an active role, Delineation of roles/responsibilities, Overcoming challenges, Staying motivated, and Parental vigilance. Significant barriers were consistently described by all study participants, including problems with medication palatability, side effects, forgetfulness, and isolation from peers. However, youth who “made the connection” between taking oral chemotherapy as prescribed and leukemia control reported overcoming barriers - or adhering despite barriers that could not be overcome - while youth who failed to “make the connection” consistently cited barriers as reasons for not taking prescribed medication. Facilitators to “making the connection” included a positive relationship with the healthcare provider and having one parent freed from other responsibilities to focus efforts on the care of the youth with ALL.

Conclusion: This is the first report to describe the process of adherence to oral chemotherapy in the context of a multiethnic cohort of youth with ALL. Additional study is needed to identify effective interventions to improve adherence in youth who fail to “make the connection.”

Second AACR International Conference on the Science of Cancer Health Disparities— Feb 3–6, 2009; Carefree, AZ