Prospective Multisite Study of Quality of Life in Pediatric Intestinal Failure

Description

This study proposes to quantify and describe the quality of life of children with intestinal failure, and to identify the medical and socio-economic factors that impact this quality of life, using data from multiple multidisciplinary intestinal failure centers across the United States and Canada specializing in the care of these participants.

Conditions

Pediatric Intestinal Failure

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Study Overview

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Study Details

Study overview

This study proposes to quantify and describe the quality of life of children with intestinal failure, and to identify the medical and socio-economic factors that impact this quality of life, using data from multiple multidisciplinary intestinal failure centers across the United States and Canada specializing in the care of these participants.

Prospective Multisite Study of Quality of Life in Pediatric Intestinal Failure

Prospective Multisite Study of Quality of Life in Pediatric Intestinal Failure

Condition
Pediatric Intestinal Failure
Intervention / Treatment

-

Contacts and Locations

Birmingham

Children's of Alabama, Birmingham, Alabama, United States, 35233

Chicago

Lurie Children's Hospital, Chicago, Illinois, United States, 60611

Boston

Boston Children's Hospital, Boston, Massachusetts, United States, 02115

Ann Arbor

C.S. Mott Children's Hospital, Ann Arbor, Michigan, United States, 48109

Saint Louis

St. Louis Children's Hospital, Saint Louis, Missouri, United States, 63100

Durham

Duke Children's Hospital, Durham, North Carolina, United States, 27710

Dallas

Dallas Children's Hospital, Dallas, Texas, United States, 75390

Seattle

Seattle Children's Hospital, Seattle, Washington, United States, 98105

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

For general information about clinical research, read Learn About Studies.

Eligibility Criteria

  • * Participants will be followed in a participating institution's intestinal rehabilitation program
  • * Participants will have a diagnosis of intestinal failure due to functional or structural intestinal dysfunction with current or prior history of specialized nutritional support (parenteral nutrition requirement for 60 out of 74 consecutive days)
  • * Participants will be age 6 months to 25 years old.
  • * Parents/caregivers must be able to complete questionnaire without assistance.
  • * English or Spanish speaking
  • * Participants aged less than 6 months or greater than 25 years will not be included in this study
  • * Participants will not be enrolled less than 3 months from index admission or initial outpatient evaluation
  • * Participants will not be enrolled less than 1 month from inpatient admission (any admission greater than 24 hours in duration)
  • * Participants will not be enrolled less than 1 month from any operative intervention requiring general anesthesia.
  • * Primary language other than English or Spanish.
  • * Participants who have a currently functional small bowel, liver/small bowel or multivisceral transplant
  • * While other major co-morbidities may be excluded at a later time during data analysis, or may be analyzed as a specific sub-group, they will not be excluded outright. For example, participants with global developmental delay may have parent surveys only, and therefore would need to be excluded from paired analysis of proxy vs. participant perception of HRQOL

Ages Eligible for Study

6 Months to 25 Years

Sexes Eligible for Study

ALL

Accepts Healthy Volunteers

No

Collaborators and Investigators

Boston Children's Hospital,

Patrick J Javid, MD, PRINCIPAL_INVESTIGATOR, Seattle Children's Hospital

Biren P Modi, MD MPH, PRINCIPAL_INVESTIGATOR, Boston Children's Hospital

Study Record Dates

2025-12