Psychological Needs and Services in a Pediatric Multidisciplinary Celiac Disease Clinic
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Psychological Needs and Services in a Pediatric Multidisciplinary Celiac Disease Clinic Shayna Coburn1,2,3 · Meredith Rose1 · Randi Streisand1,2 · Maegan Sady1,2 · Margaret Parker1 · William Suslovic1 · Vanessa Weisbrod1 · Benny Kerzner1,2 · Ilana Kahn1,2
© Springer Science+Business Media, LLC, part of Springer Nature 2019
Abstract This study aims to describe the psychological needs in children with celiac disease (CD) and to examine the feasibility of psychological consultation in a multidisciplinary clinic. Participants (N = 69) included children with CD and their parents who completed a pre-clinic mental health survey and a 30-min psychological consultation as part of a multidisciplinary clinic (including gastroenterology, nutrition, education, neurology, and neuropsychology). Quantitative and qualitative analyses examined psychological needs, experiences, and satisfaction. The psychologist identified clinically significant symptoms and provided referrals in 49% of children. There were no significant differences by time since CD diagnosis. During the psychology consultation, families discussed emotional adjustment, impact on life and physical well-being, and management of the gluten-free diet. Parents reported high levels of satisfaction from the clinic visit. We identified frequent psychological needs in pediatric CD. The multidisciplinary approach may be a feasible model for specialized, optimal treatment in this population. Keywords Celiac · Coeliac · Gluten-free · Pediatric · Child · Psychological · Multidisciplinary
Introduction Celiac disease (“CD”) is an autoimmune disease that affects approximately 1 out of 133 people (Fasano & Catassi, 2001), with diagnosis occurring at any point across the lifespan (Simell et al., 2007). The only treatment for CD is a strict, lifelong gluten-free diet (GFD), which has a perceived treatment burden and psychosocial impact comparable to end-stage renal disease in adults (Shah et al., 2014). Left untreated, CD is associated with osteoporosis, neurologic disorders, gut inflammation, and cancer (Fasano & Catassi, 2001). Multidisciplinary care has been identified as a key element of CD management to support the complexity of the demands of the GFD (Isaac, Wu, Mager, & Turner, 2016; James, 2005). Individuals with CD may be at
* Shayna Coburn [email protected] 1
Children’s National Hospital, Washington, DC, USA
2
George Washington School of Medicine, Washington, DC, USA
3
Attn: Gastroenterology, Children’s National Hospital, 111 Michigan Ave NW, Washington, DC 20010, USA
a higher risk for psychological disorders, reduced quality of life, and stress than healthy children and adults (Slim, Rico-Villademoros, & Calandre, 2018). Additionally, mental health comorbidities and other challenges have been associated with poorer adherence to the GFD (Ciacci & Zingone, 2015; Coburn, Puppa, & Blanchard, 2019; de Lorenzo, Xikota, Wayhs, Nassar, & de Souza Pires, 2012; Khurana et al., 2015; Rashid et al., 2005). This may be particularly important for childre
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