LITERATURE REVIEW

Finding Each Other

The Evolution, Clinical Impact, and Future Horizons of Patient Advocacy in the Intestinal Failure Community

Andrew E. Jablonski, BA · Short Bowel Syndrome Foundation

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ABSTRACT

Background: Intestinal failure (IF) is a rare, life-threatening gastrointestinal condition requiring long-term, high-complexity home nutrition support—principally Home Parenteral Nutrition (HPN) and Home Enteral Nutrition (HEN). Due to the low incidence of IF, patients and family caregivers historically experienced profound psychosocial isolation, a steep learning curve regarding catheter/tubing management, and high rates of preventable complications such as Central Line-Associated Bloodstream Infections (CLABSIs).

Objective: To synthesize the historical development, structural evolution, and clinical-psychosocial contributions of patient advocacy networks within the IF community from the late 1960s to the present.

Methods: A narrative literature review methodology was utilized to analyze the historical transition from informal, home-based support groups to formal, disease-specific non-profit organizations, examining their impact on clinical care, patient safety, health policy, and translational research.

Results: The evolution of IF advocacy unfolded across three distinct paradigms:

  • The Foundational Era (late 1960s–1990s): Lifeline Foundation and The Oley Foundation — peer education, standardized home care protocols, reduced isolation.
  • The Disease-Specific Expansion Era (2010s): SBSF, Global Gastroschisis Foundation/Avery’s Angels, Transplant Unwrapped — pathophysiology-focused advocacy, transitions, GLP-2 therapies.
  • The Modern Co-Research Paradigm (2020s–Present): Patient-driven research, supply chain advocacy, and PROMs.

Conclusion: Patient advocacy in IF has transformed from a peer-support mechanism into an indispensable component of the multidisciplinary clinical care continuum. Active integration of advocacy organizations into clinical workflows improves patient outcomes, mitigates complication risks, and aligns clinical research with lived experience.

THREE PARADIGMS
How IF advocacy evolved
ERA 1

Foundational Era

Late 1960s–1990s · Lifeline & Oley · hybrid clinician–patient model, peer networks, safety protocols
ERA 2

Disease-Specific Era

2010s · SBSF & allied groups · SBS identity, transitions, GLP-2 access, specialized navigation
ERA 3

Co-Research Paradigm

2020s–Present · PROMs, trial co-design, supply-chain advocacy, patient-as-partner care

1. Introduction & Background (tap to expand)

Intestinal failure (IF) is defined as the reduction of gut function below the minimum level necessary for the absorption of macronutrients, water, and electrolytes, requiring intravenous supplementation—known as parenteral nutrition (PN)—to maintain health or growth. Type III IF represents a complex, lifelong condition that fundamentally alters a patient’s physiological and psychosocial baseline.

Primary etiologies include short bowel syndrome (SBS) from extensive surgical resection, congenital mucosal diseases, severe motility disorders, and radiation enteritis. Management relies on HPN or HEN—among the most technologically demanding therapies outside intensive care.

This literature review traces the historical trajectory, organizational paradigms, clinical impacts, and future directions of patient advocacy within the intestinal failure and home nutrition support communities.

2. Early Era of Home Nutrition Support (tap to expand)

Timeline: Late 1960s TPN (Dudrick) → late 1970s HPN → 1977–78 Lifeline Foundation (Lee & Marshall Koonin) → 1983 Oley Foundation (Clarence “Oley” Oldenburg & Dr. Lyn Howard) → 1990s ASPEN patient-facing integration.

The Oley Foundation established a hybrid model uniting patients, caregivers, physicians, nurses, dietitians, and pharmacists—clinical safety guidance, peer education, and patient outcome registries.

Oley remained the primary non-profit dedicated to the broad technology of home parenteral and enteral nutrition support through the 1980s and 1990s.

3. Disease-Specific Era & Rise of SBSF (tap to expand)

Beginning in 2010, advocacy shifted from technology-based support (HPN/HEN) toward pathophysiology-targeted navigation. Digital connectivity, stronger pediatric IR programs, and GLP-2 therapies (e.g., teduglutide) shaped this era.

SBSF was founded December 3, 2010, by Andrew “Andy” Jablonski, professionalizing disease-specific identity for SBS and building scalable patient-first infrastructure.

Allied organizations include Global Gastroschisis Foundation (Avery’s Angels), Transplant Unwrapped, and The Gutsy Perspective (patient-led translational research and PROMs).

4. Clinical, Psychosocial & Systemic Impacts (tap to expand)

Advocacy influences morbidity, mortality, and system use—not only emotional support. Key dimensions: clinical care continuum (CLABSI reduction, IRP referral), psychosocial QoL, and regulatory/supply-chain resilience.

Peer networks reinforce aseptic technique, antiseptic locks, early sepsis recognition, and referral to multidisciplinary IRPs shown to improve weaning and survival.

During parenteral component shortages, Oley and SBSF worked with ASPEN and the FDA on rationing guidance, emergency imports, and prioritization of home patients.

5. Future Horizons & Unmet Needs (tap to expand)

Priorities: global health equity in LMICs; integrated psycho-gastroenterology in IRP clinics; translational co-research (COAs, PROMs, patient-led registries).

Future trials for enterotrophic agents and dual agonists increasingly need advocacy input so endpoints include PN-free days, sleep quality, travel, and vocational participation—not only lab and volume metrics.

6. Conclusion (tap to expand)

What began in the late 1960s–1970s as a survival response to isolation has become a sophisticated multi-organizational advocacy network.

Patient advocacy does not replace the clinical realities of intestinal failure—but by turning isolated struggle into shared community infrastructure, it ensures patients and families no longer navigate life-sustaining technology alone. Integrating advocacy into clinical workflows remains essential for comprehensive, patient-centered IF care.

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Disclaimer
This literature review is for educational purposes only. It is not a substitute for professional clinical judgment, diagnosis, or treatment.