Patient-centric care: Managing celiac disease.

Sir,

In this era of evidence-based medicine, Indian Journal of Endocrinology and Metabolism has correctly supported the movement of patient empowerment and patient-centered care in endocrinology.[12] However, despite an increasing burden, Celiac Disease (CD) remains a neglected area in terms of Patient Centered Care (PCC).

Though not an endocrine dysfunction in strict sense, CD is an autoimmune gastrointestinal disorder with numerous related endocrinopathies. These patients are known to develop diabetes, osteoporosis, and other altered hormonal disorders that affect its severity and progression.[3] Also, undiagnosed CD may interfere with control of other endocrinal disorders, especially Type 1 Diabetes Mellitus,[4] hypothyroidism, and short stature.

The management of CD is similar to any other chronic disease and consists of lifelong gluten-free diet (GFD). However, this alone is not enough to ensure an optimal quality of life for patients with CD. It is essential to supplement GFD with (1) a group approach, which involves the patient, family members, caregivers, treating clinician, and dietitian; (2) consideration of patient concerns; (3) support therapy, through regular follow-ups; and (4) periodic compliance and well-being assessment of theindividual.[5] Therefore, a sound understanding of principles of PCC is necessary.

The clinician must understand the CD treatment barriers of poor palatability of GFD, ambiguous food labels, and frequent co-existing depression and anxiety.[6] Often, GFD prescriptions, strict regimens, and “consume-no-other-food” barrier seem to augment the practical, psycho-social, and emotional suffering of the patient and may even be counterproductive.[7] The treating doctor must be able to suggest solutions for such complex issues. This can be achieved by using a patient-centric approach, patient empowerment, and individualized treatment plans.[1]

The clinician must empower the patient clearly about CD, with a positive approach, and emphasize the lifelong role of GFD. A comprehensive dietary advice, nutritional assessment, diet education, meal planning, and counseling on how to adjust with gluten-free lifestyle must be taken promptly from a trained dietician. Similar to Food Allergen Labeling and Consumer Protection Act (FALCPA) of USA, regulations by FDA India for appropriate labeling of “gluten-free” food must be initiated. Cognitive, behavioral, and practical coping strategies, amalgamated with rationality, flexibility, and ease of the patient can be used additionally. Lastly, the health care costs, emotional issues, and other patient concerns must be dealt empathetically by the doctor in order to ensure better patient lifestyle and quality of life.[8] Patient focused initiatives of CD like websites (www.celiac.com and www.celiac.org), support groups, awareness campaigns, and GFD stores offer newer avenues to patient-centric care in CD.

Through this letter, and the global platform of Indian Journal of Endocrinology and Metabolism, we aim at sensitizing all its readers toward the need for patient-centered management plan for CD.