Understanding What Matters Most to Patients: Establishing the Validity of a Best-Worst Scaling Survey

Completed

Brief Summary: This study will evaluate the validity of using a survey to quantify patient preferences at the point-of-care and the potential effectiveness of the survey to improve goal-concordant care. The primary hypothesis is that by identifying the strength of patient preferences for outcomes with this survey clinicians will be able to improve goal-concordant care by aligning clinical recommendations with patients' preferences. This study will have 50 patients with newly diagnosed hematologic malignancy complete the survey throughout their disease course (up to 2 years) and conduct qualitative interviews with a subset (n = 20) of participants. The information obtained from these participants will be used to refine the survey. Interviews with oncologists and palliative care specialists (up to 10) will inform implementation.

Recruitment & Eligibility

Inclusion Criteria

Confirmed new diagnosis of one of the following hematologic malignancies: aggressive lymphoma, multiple myeloma, CLL, CML, AML, ALL, MDS EB1 or EB2
Age≥60
Ability to read, understand, and communicate fluently in English
Ability to understand and comply with study procedures
Willingness and ability to provide written informed consent

Exclusion Criteria

Dementia, altered mental status, or psychiatric condition that would prohibit the understanding or rendering of informed consent or participation in the discrete choice experiment.
Significant medical conditions, as assessed by the investigators, that would substantially increase the burden on the patient to complete study assessments (such as multiorgan failure, respiratory failure, or other critical illness).

Arm && Interventions

Group	Intervention	Description
Qualitative Interviews: Other	Qualitative Interviews	10 participants (subset of the three pilot testing cohorts) that designate in their questionnaires that any other outcome besides "living longer" is the most important.
Pilot Testing: Aggressive Lymphoma	Assessment Surveys	20 patients diagnosed with aggressive lymphomas (e.g. diffuse large B-cell, advanced Hodgkin's) participating in the questionnaire portion of the study.
Qualitative Interviews: Living Longer	Qualitative Interviews	10 participants (subset of the three pilot testing cohorts) that designate in their questionnaires that "living longer" is the most important outcome for them.
Pilot Testing: Myeloma/CLL/CML	Assessment Surveys	10 patients diagnosed with either myelomas, chronic lymphocytic leukemia, or chronic myeloid leukemia that are participating in the questionnaire portion of the study.
Pilot Testing: Acute Leukemia	Assessment Surveys	20 patients diagnosed with acute leukemias participating in the questionnaire portion of the study.

Primary Outcome Measures

Name	Time	Method
Content Validity of Best-Worst Scaling (BWS) Survey	3 months after treatment decision	Cognitive interviewing will be used to evaluate the content validity of using a BWS survey to quantify the preferences of older patients with hematologic malignancies at the point-of-care. BWS survey asks patients a series of questions where they choose one attribute as best and one as worst - the 7 included in this survey are maintaining usual activities, living longer, avoiding dependence on others, avoiding short-term side effects, avoiding long-term side effects, avoiding hospitalizations, and avoiding high out-of-pocket costs.

Secondary Outcome Measures

Name	Time	Method
Completion Rate Over Time	Up to 1 year	The completion rate over time will be reported by the number of patients who complete the BWS survey at each time point, in 3 months intervals.
Acceptability of Best-Worst Scaling (BWS) Survey to Patients	Up to 7 days after treatment decision	Number of patients who respond with agree/strongly agree to "I found survey acceptable to clarify my preferences"
Preliminary Efficiency of Best-Worst Scaling (BWS) Survey	Up to 7 days after treatment decision	Number of patients who respond moderately effective/very affective to "how effective was the survey to help you and your doctor choose a treatment that was consistent with your goals?"