Promoting Resilience in Stress Management (PRISM): PRISM is based on stress and coping theory
and prior research. It is designed to improve resilience for patients with serious illness
and, for this study, has been modified for patients who have experienced healthcare
discrimination. The development of this novel resilience resource intervention is based off
of a conceptual framework of resilience and affirmed relationships between resilience
resources and outcomes. PRISM consists of five, one-on-one sessions lasting 30-50 minutes
targeting specific teachable resilience skills: stress management, problem solving, goal
setting, benefit finding, and meaning making. Biobehavioral models suggest that these
resources are related to health-related quality of life, health behaviors, and self-advocacy.
PRISM was refined with expert opinion and interviews with patients, psychologists, and social
workers. Initially designed for and successfully tested in seriously ill adolescents and
young adults (AYAs) with advanced cancer, PRISM has been successfully deployed in AYAs with
diabetes and parents of seriously ill AYAs. It is undergoing testing in patients with cystic
fibrosis, chronic renal failure, craniofacial surgery, and adult congenital heart disease.
Patients will be identified and approached, study goals explained, and consent obtained prior
to enrollment. Participants will complete three surveys: enrollment, 1- and 3- months post
randomization. At enrollment, they will complete demographic information, and the
Discrimination in Medical Setting (DMS), Microaggressions in Health Care (MHCS), and Group
Based Medial Mistrust (GBMM) scales. Patients will be randomized 1:1 to either PRISM or usual
care. Retention will be optimized via monthly contacts with all patients. A calendar of
appointments and study procedures will be created at randomization. Strategies used during
the collection of preliminary data for this proposal are described and utilized in Aim 1 to
help facilitate survey completion will be employed. Patients will receive reminder
phone-calls and emails 1 week before each survey, and in-person check-ins during clinic
visits during a 2-week window around each survey. If surveys are not completed within 1 week,
participants will receive a phone call and email to assess willingness to participate and
remind them.
PRISM is designed to be delivered by trained research associates to optimize dissemination.
Interventionists in prior trials have not held advanced degrees and there are no detectable
differences in fidelity or patient-engagement based on professional background. For this
pilot, I will conduct the intervention to facilitate feasibility and gain experience to train
future interventionalists. Sessions will occur at a time convenient to the patient with the
first session to occur within 1 week of enrollment. If the patient is discharged, the
intervention can continue in the outpatient setting in-person or by HIPPA-compliant Zoom.
After completion, participants will receive weekly "booster" contacts (invitations to
practice reviewing certain skills) until the occurrence of a planned patient-clinician
conversation, facilitated and arranged by study staff during the 5th session. All
participants will receive paper worksheets to practice skills between sessions, plus access
to a free, digital PRISM app (available only for patients enrolled in PRISM). The app was
designed and programed by two Seattle-based companies [Artefact (artefactgroup.com) and
General UI (generalui.com)], 3 prior PRISM recipients, a family-advisory team, and the
Seattle Children's Hospital Digital Health team. It is available on both iOS and Android
platforms and includes the same exercises as the worksheets. The app includes links to social
media and resources with options to enable push notifications and reminders. A digital
interface allows study staff to track user frequency, length spent on each practice page, and
use over time.