Promoting Stress Management and Resilience Among Individuals With Von Hippel- Lindau Disease

Mass General Brigham

Status: Invitation-only

Conditions: Genetic Disorder; Von Hippel-Lindau Disease

Treatments: Behavioral: 3RP-VHL

Study type: Interventional

Funder types: Other

Identifiers

NCT05737602

22-612

Details and patient eligibility

About

The Relaxation Response Resiliency Program (3RP) has shown efficacy in improving coping and resilience across diverse populations; however, little is known about how it helps individuals manage the challenges of living with a chronic illness. This study proposes to pilot test an adapted version of the 3RP among patients living with VHL.

Full description

The 3RP has not been carried out with VHL patients. As such, the investigators are looking to see if an adapted program, tailored to the needs of patients with VHL, is feasible, acceptable, and helpful in improving coping among individuals living with VHL.

This study is a two phase trial. Phase I is descriptive. It is comprised of conducting interviews with patients and caregivers to understand the challenges of living with VHL and patient's programatic needs. This information will be used to tailor the program for patients living with VHL. Phase II is a single-arm feasibility trial that will examine if the adapted program is feasible, acceptable, and helps promote stress management among VHL patients. To these means, we will test the adapted 3RP (3RP-VHL) in up to 40 patients living with VHL. Participants will complete surveys at baseline and post 3RP-VHL program completion. This record will reflect the trial component (Phase II) only, as feasibility and acceptability outcomes will be collected for this phase.

Enrollment: 40 estimated patients

Sex: All

Ages: 18+ years old

Volunteers: No Healthy Volunteers

Inclusion criteria

• Ages 18+
• Confirmed diagnosis of VHL

Exclusion criteria

• Is medically, psychiatrically, or otherwise unable to participate (as determined by a physician or study PI).
• Unwilling or unable to participate in study sessions delivered via Partners Telehealth videoconferencing.
• Participated in Phase 1 qualitative interview.

Trial design

Primary purpose: Supportive Care

Allocation: N/A

Interventional model: Single Group Assignment

Masking: None (Open label)

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40 participants in 1 patient group

3RP-VHL

Experimental group

Description:

* An adapted version of the 3RP (3RP-VHL) for individuals with VHL. The adapted program incorporates the three prongs of the 3RP: RR elicitation, stress awareness, and adaptive strategies. It will be delivered in weekly sessions over the course of approximately 8 weeks. * Complete pre- and post-intervention surveys.

Treatment:

Behavioral: 3RP-VHL