PIF-QoL
Pediatric Intestinal Failure Quality of Life Survey
The PIF-QoL is a disease-specific questionnaire that measures quality of life in children and adolescents with a history of intestinal failure (IF). It was developed by the gutsy perspective team with extensive feedback from clinicians and community stakeholders, including patients and caregivers.
Two parallel versions are available:
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Child self-report, completed by the child or adolescent (ages 8–18)
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Caregiver proxy-report, completed by a parent or primary caregiver (for children ages 4–18)
What the questionnaire covers
The PIF-QoL contains 39 quality-of-life items across seven domains. Five core domains are completed by everyone, and two supplemental domains are assessed only when they apply.
Core domains
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Symptoms
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Social Relationships
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Healthcare
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Emotional Wellbeing
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Food & Eating
Supplemental domains
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School
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Devices & Therapies
Administration
The PIF-QoL is available exclusively in electronic format through REDCap.
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Estimated completion time: approximately 10 minutes.
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Recommended setting: in clinic, on a dedicated tablet or similar device.
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Remote administration: the survey can also be emailed to respondents via a REDCap survey link.
Development and validation
The PIF-QoL was developed through a community-driven process led by the gutsy perspective team that included a literature review, an exploratory qualitative study with children and caregivers, review by content experts, including patients, caregivers, clinicians, and measurement specialists, focus groups and cognitive interviews with children, and field testing at a large intestinal failure center located in the United States.
Initial psychometric evaluation was conducted as part of the development of the PIF-QoL. Internal consistency was acceptable to good across most domains, and total-score test-retest reliability was strong in both versions (ICC = 0.90 caregiver, 0.92 child). Full results are reported here.
Access and licensing
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Research and clinical use: free of charge. The PIF-QoL is available at no cost for non-commercial academic research, educational use, and clinical practice. Use is non-commercial if its primary purpose is not the generation of revenue or direct financial benefit, regardless of whether your organization is a for-profit entity.
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Commercial and industry use: license required. Any use whose primary purpose is commercial gain, including industry-sponsored clinical trials, use under contract with a for-profit sponsor, or incorporation into for-profit products or services, requires a separate paid licensing agreement and prior written permission. Please contact us to request a commercial license.
How to obtain the PIF-QoL
1. Agree to the terms of use and submit your user information. This is required before any use of the instrument. The form collects basic information about the context of your intended use and your contact details, which allows us to track how the instrument is being used and to optionally let users know about relevant research collaborations. Complete the Agreement and User Information Form →
2. Import the instrument from the REDCap Shared Library. Both versions, with built-in automated scoring, are available through the REDCap Shared Library. You will need access to REDCap via your institution. Search the REDCap Shared Library for "PIF-QoL."
3. Receive the user manual. The manual will be sent directly to users once the Agreement and User Information Form has been submitted. This manual documents all PIF-QoL items, branching logic, scoring procedures, missing-data rules, and the published psychometric results.
Key conditions of use
All use is governed by the PIF-QoL Terms of Use and License Agreement. Briefly,
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The instrument must be used in its original, unmodified electronic form. Paper administration is not permitted, because the scoring functionality is embedded in the electronic format.
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Modification, adaptation, translation, abbreviation, and derivative works require prior written permission.
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The PIF-QoL may not be redistributed or reproduced in publications, presentations, or reports, or incorporated into any repository, platform, assessment library, or machine learning dataset.
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In multi-site studies, each investigator or site must agree to the Terms separately.
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Publications, presentations, and reports must cite the validation article.
Questions about access, permitted use, modifications, translations, commercial licensing, or collaboration should be directed to Marie Neumann, PhD.
How to cite
If you use the PIF-QoL in research or clinical practice, please cite:
Neumann, M. L., Ladner, A., Allen, J. Y., Kakani, S., Rauen, M. H., & Mercer, D. F. (2025). Measuring disease-specific quality of life in pediatric intestinal failure: Development and validation of the PIF-QoL. Intestinal Failure, 8, 100324.
Contact
For questions about the PIF-QoL, including access, licensing, permissions, scoring, or collaboration:
Marie L. Neumann, PhD
Assistant Professor
Department of Surgery
University of Nebraska Medical Center
988285 Nebraska Medical Center
Omaha, NE 68198
402.559.3935
Acknowledgments
Development and validation of the PIF-QoL was supported by Zealand Pharma and the J.A.R. Simmons Fund for Intestinal Failure Research. The authors thank the children and caregivers who took part in the focus groups, cognitive interviews, and field testing, and the clinical staff and patient community stakeholders who contributed to the instrument's development.