Primary Palliative Care for Patients With Advanced Hematologic Malignancies

Study investigators will develop and pilot-test an oncology nurse-led care management
intervention to meet the primary palliative care needs of patients with advanced hematologic
malignancies.

Aim 1 is a case series to develop and refine the intervention. During this time, we will
develop initial interventionist training materials, study protocols, and a web-based outcomes
database; train 2 hematology-oncology nurses; enroll 10 patients with advanced hematologic
malignancies and their informal caregivers to receive intervention visits; conduct debriefing
interviews; iteratively refine the intervention based on nurse, oncologist, patient, and
caregiver feedback; and prepare the protocol for Aim 2. Aim 2 is a pilot study to assess the
feasibility and acceptability of administering the intervention and assessing outcomes. We
will recruit 30 patients and their informal caregivers to receive the intervention developed
in Aim 1 and collect measures of quality of life, symptom burden, anxiety and depressive
symptoms, caregiver burden, and healthcare utilization at baseline and monthly for up to
three months. Trial outcomes will include: rates of enrollment, study completion, and outcome
completion; intervention fidelity; and self-reported measures of study burdensomeness and
effectiveness among patients, caregivers, and clinicians.

Participants will be (1) patients with advanced hematologic malignancies receiving care at
a participating clinic; (2) their caregivers; (3) participating clinicians.

Patient:

Inclusion Criteria:

- adults (≥ 21 years old)

- Refractory or Recurrent hematologic cancer: lymphoma, leukemia, myeloma, amyloidosis
(secondary manifestation myeloma & AL Amyloidosis), and CML (CML can only be
accelerated or blast phase)

- planning to receive ongoing care from a participating oncologist and willing to be
seen at least monthly.

Exclusion criteria:

- chronic myeloid leukemia (CML) OTHER THAN accelerated or blast phase

- unable to read and respond to questions in English

- lacks decision-making capacity, as determined by the patient's oncologist

- unable to complete baseline interview

Caregiver

Inclusion Criteria:

- adults (≥ 21 years old)

- family member or friend of an eligible patient

Exclusion criteria:

- unable to read and respond to questions in English

- unable to complete the baseline interview (patients will be asked to select as
caregiver the person who is most likely to accompany them to visits or help with their
care should they need it)

Eligible clinicians will be oncology nurses and oncologists practicing at participating
clinics.