A Study to Develop a Learning Healthcare System for Distressed Children with Complex Disease

Overview

About this study

The purpose of this study to explore current practices for detecting, referring, and addressing psychosocial distress in pediatric patients with C-CD through qualitative interviews with key stakeholders, including patients, caregivers, and health systems clinicians and support staff members.

Participation eligibility

Participant eligibility includes age, gender, type and stage of disease, and previous treatments or health concerns. Guidelines differ from study to study, and identify who can or cannot participate. There is no guarantee that every individual who qualifies and wants to participate in a trial will be enrolled. Contact the study team to discuss study eligibility and potential participation.

Inclusion Criteria - Patient:

Children aged 18 and younger at the time of consent with C-CD.
Actively being followed by the Mayo Clinic Complex Care Clinic (ComPACT) with at least one visit in the past year.
English speaking.

Inclusion Criteria - Parent or Caregiver:

Parents, guardians, and caregivers of participating children with C-CD.
Aged 18 or older at time of consent.
English speaking.

Inclusion Criteria - Clinician Stakeholder:

ComPACT-affiliated physicians, nurse practitioners, nurses, social workers.

Inclusion Criteria - Health System Stakeholder:

Desk staff, administrators, clinical leaders, information technology staff within pediatrics or related practices.

Exclusion Criteria - Patient:

Clinical condition that would interfere with their ability to participate in an interview (e.g., severe developmental delay or other cognitive impairment).

Exclusion Criteria - Parent or Caregiver:

Clinical condition that would interfere with their ability to participate in an interview (e.g., severe developmental delay or other cognitive impairment).

Exclusion Criteria - Clinician/Health System Stakeholder:

None.

More information

Publications

Publications are currently not available

Clinical Trials