Michelle C Maciag1, Linda J Herbert2, Scott H Sicherer3, Michael C Young1, Fallon Schultz4, Amity A Westcott-Chavez4, Wanda Phipatanakul1, Theresa A Bingemann5, Lisa M Bartnikas6. 1. Department of Medicine, Division of Immunology, Boston Children's Hospital, Boston, Mass; Harvard Medical School, Boston, Mass. 2. Division of Allergy and Immunology, Children's National Hospital, Washington, DC. 3. Department of Pediatrics, Division of Allergy and Immunology, Icahn School of Medicine at Mount Sinai, New York, NY. 4. International FPIES Association (I-FPIES), Point Pleasant Beach, NJ. 5. Department of Allergy and Immunology, University of Rochester School of Medicine and Dentistry, Rochester, NY. 6. Department of Medicine, Division of Immunology, Boston Children's Hospital, Boston, Mass; Harvard Medical School, Boston, Mass. Electronic address: Lisa.Bartnikas@childrens.harvard.edu.
Abstract
BACKGROUND: Little is known about the psychosocial impact of food protein-induced enterocolitis syndrome (FPIES). OBJECTIVE: To characterize quality of life, stress, worry, anxiety, and self-efficacy in caregivers of children with FPIES and affected children, and determine risk factors for increased psychosocial burden. METHODS: Surveys completed by caregiver-members of the International FPIES Association at a conference (n = 42) and online (n = 368) were analyzed. RESULTS: There was significant burden, stress, worry, and anxiety among caregivers. There was a positive correlation among Food Allergy Quality of Life-Parental Burden, Perceived Stress Scale-10, Penn State Worry Questionnaire, and Beck Anxiety Inventory scores, and these were negatively associated with Food Allergy Self-Efficacy for Parents (FASE-P) scores. Lower income was associated with poorer caregiver health-related quality of life (HRQoL) (P = .039) and lower FASE-P (P = .028). Greater number of food groups avoided correlated moderately with poorer HRQoL (r = 0.386; P < .001), higher anxiety among preschoolers (r = 0.262; P = .013) and parents (r = 0.594, P = .025). Avoiding cow's milk due to FPIES was associated with poorer caregiver HRQoL (P < .001), higher stress (P = .001), and lower FASE-P (P = .013). Caregivers whose child was not attending daycare/school due to FPIES had poorer HRQoL (P < .001), higher stress (P < .014), and worry (P = .004). Compared with published cohorts of caregivers of children with IgE-mediated food allergy, the burden of FPIES on caregivers was significantly higher (mean = 3.4 vs 3.0; P < .001) and self-efficacy was significantly lower (mean = 63.9 vs 76.1; P < .001). CONCLUSIONS: There is increased stress, worry, anxiety, and reduced HRQoL and self-efficacy among caregivers of children with FPIES and increased general anxiety among preschoolers. Additional research is needed to inform effective psychosocial interventions.
BACKGROUND: Little is known about the psychosocial impact of food protein-induced enterocolitis syndrome (FPIES). OBJECTIVE: To characterize quality of life, stress, worry, anxiety, and self-efficacy in caregivers of children with FPIES and affected children, and determine risk factors for increased psychosocial burden. METHODS: Surveys completed by caregiver-members of the International FPIES Association at a conference (n = 42) and online (n = 368) were analyzed. RESULTS: There was significant burden, stress, worry, and anxiety among caregivers. There was a positive correlation among Food Allergy Quality of Life-Parental Burden, Perceived Stress Scale-10, Penn State Worry Questionnaire, and Beck Anxiety Inventory scores, and these were negatively associated with Food Allergy Self-Efficacy for Parents (FASE-P) scores. Lower income was associated with poorer caregiver health-related quality of life (HRQoL) (P = .039) and lower FASE-P (P = .028). Greater number of food groups avoided correlated moderately with poorer HRQoL (r = 0.386; P < .001), higher anxiety among preschoolers (r = 0.262; P = .013) and parents (r = 0.594, P = .025). Avoiding cow's milk due to FPIES was associated with poorer caregiver HRQoL (P < .001), higher stress (P = .001), and lower FASE-P (P = .013). Caregivers whose child was not attending daycare/school due to FPIES had poorer HRQoL (P < .001), higher stress (P < .014), and worry (P = .004). Compared with published cohorts of caregivers of children with IgE-mediated food allergy, the burden of FPIES on caregivers was significantly higher (mean = 3.4 vs 3.0; P < .001) and self-efficacy was significantly lower (mean = 63.9 vs 76.1; P < .001). CONCLUSIONS: There is increased stress, worry, anxiety, and reduced HRQoL and self-efficacy among caregivers of children with FPIES and increased general anxiety among preschoolers. Additional research is needed to inform effective psychosocial interventions.
Authors: Michelle C Maciag; Lisa M Bartnikas; Scott H Sicherer; Linda J Herbert; Michael C Young; Fallon Matney; Amity A Westcott-Chavez; Carter R Petty; Wanda Phipatanakul; Theresa A Bingemann Journal: J Allergy Clin Immunol Pract Date: 2020-01-28
Authors: Lisa M Bartnikas; Anna Nowak-Wegrzyn; Fallon Schultz; Wanda Phipatanakul; Theresa A Bingemann Journal: Ann Allergy Asthma Immunol Date: 2021-01-12 Impact factor: 6.347