Identifying Supportive Care Needs in an Adolescent and Young Adult Leukemia Clinic

Background: Adolescent & Young Adult (AYA) patients diagnosed with hematologic malignancies comprise a unique population of individuals in whom serious illness can have profound effects on physical and emotional health. Integrating palliative care into an outpatient AYA clinic requires a multidisciplinary team and tailored assessments to screen for supportive care needs. At this time, it is not fully known how AYA patients with leukemia perceive palliative care introduced at various stages of care in the outpatient environment.

Methods: Established AYA patients (median age 29 years at assessment, range 18-45 years) with a diagnosis of acute or chronic leukemia either undergoing active treatment or in survivorship were referred by the oncology team to the supportive care team for symptom burden assessment. Patients who received focused symptom assessments from the palliative care team were invited to participate in subsequent qualitative interviews regarding their experience. Content analyses of these transcribed interviews was conducted for thematic identification.

Results: Of the 15 completed patient interviews, all referenced symptom burden as a major thematic concern. Most commonly, patients reported nausea, vomiting, peripheral neuropathy, anxiety, and depression. The impact of life disruptions, including leaves of absence from work and school/education, were referenced by 11 of 15 patients. All interviewees also referenced the importance of social support networks, either through a significant other or spouse, parent, or children, during the patients’ clinical course. From the pool of 15 interviews, 11 patients had not heard of palliative care prior to the study. Two patients thought it was only for terminal illness, and 2 had an understanding consistent with the services of palliative care. Thirteen of 15 patients commented on how spiritual belief influenced their medical decision-making. Of those patients, 8 of 13 reported that spiritual beliefs influenced their care decisions, whereas a minority (N=5) felt that spirituality did not impact their decision-making.

Conclusion: Perceptions of palliative care varied among the interview responses. A common theme noted throughout the patient interviews was a lack of knowledge of the offerings of palliative care. After receiving supportive care services, patients overall had a positive perception of palliative care and reported appreciation for support that focused on both physical and emotional health. Qualitative analyses also highlighted the importance of spirituality and support networks, suggesting that early, active discussions related to these areas could result in spiritual care referral for interested patients. Integration of palliative care into the care of AYAs with leukemia offered a holistic clinical approach for addressing the patients’ supportive care needs.