Patient-centered outcomes research is a recent and promising development in healthcare that expands how we assess the impact of disease. In addition to tracking physiological and medical outcomes such as deaths or hospitalizations, patient-centered outcomes research seeks to measure how health conditions – and their management and treatment – affect quality of life.
Food allergy families know that the risk of anaphylaxis is an ongoing source of anxiety, and the steps taken to avoid allergic reactions can lead to social isolation and bullying. A June 2017 review in Current Allergy and Asthma Reports sheds light on the negative psychosocial aspects of food allergy, the studies that quantify these impacts, and the initiatives pursued by FARE and others to improve quality of life for food allergy patients and caregivers. Click here for a summary of the article with an annotated bibliography.
Food allergy influences every facet of life, detracting from experiences as diverse as meal planning, nutrition, social activities and educational opportunities. Researchers have reported that quality-of-life measures are lower for children with food allergy than children with insulin-dependent diabetes or asthma. Food allergy also taxes the family pocketbook, costing $25 million per year in added medical bills, high-priced “free-from” foods, time taken off from work, and opportunity costs incurred when a caregiver changes or leaves paid employment.
At the same time, we’ve learned that modest interventions can boost quality-of-life scores. Caregivers report that three sessions of phone counseling significantly improved their food allergy management skills. Workshops have also been effective in helping parents feel more competent and less burdened as they help their children navigate food allergies. Oral food challenges have been shown to improve patient quality of life even when the patient fails the challenge.
FARE initiatives are prominently featured among the patient support programs described in the review article. These include:
- The annual FARE Teen Summit
- Training programs and monthly webinars
- Community outreach events like FARE’s Food Allergy Heroes Walk
- The Teal Pumpkin Project, encouraging households to offer non-food goodies for trick-or-treaters with special diets
Also highlighted is the role that FARE and other advocates have played in supporting legislation and policies to protect the food allergy community:
- The Food Allergen Labeling and Consumer Protection Act of 2004 (FALCPA), which mandated the labeling of eight major allergens
- The Food Allergy and Anaphylaxis Management Act (FAAMA), signed in 2011 as section 112 of the Food Safety Modernization Act, which led to the establishment of guidelines for food allergy management in K-12 schools and early childhood education programs
- The School Access to Epinephrine Act of 2013, which incentivizes the availability of undesignated (stock) epinephrine in schools
- Advocacy campaigns underway to make airlines, restaurants and public venues of all kinds safer for those with food allergy
Efforts by FARE to align the interests of the research and patient communities were strengthened in 2016 by a two-year award from the Patient Centered Outcomes Research Institute. Stay tuned for reports on the work of FARE’s regional and national Outcomes Research Advisory Boards, whose volunteers are helping to define and measure how we can improve the lives of all those affected by life-changing and potentially life-threatening food allergies.