Patient empowerment in endocrinology

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Editorial

Patient empowerment in endocrinology Sanjay Kalra, Ambika Gopalakrishnan Unnikrishnan1, Soren Eik Skovlund2 Department of Endocrinology, Bharti Hospital and BRIDE, Karnal, Haryana, 1Department of Endocrinology, Amrita Institute of Medical Sciences, Kochi, India, 2Global Director, Patient Research, Advocacy and Support; Global DAWN (Diabetes Attitudes, Wishes and Needs) Studies, Novo Nordisk A/S, Denmark

As patient load increases in endocrine and metabolic clinics across the globe, it is not uncommon to find endocrinologists discussing the difficulties of managing larger numbers of patients. This is especially true in resource-challenged settings. The 600 odd members of the Endocrine Society of India (ESI), in close cooperation with other colleagues, today are faced with the treatment demands of 51 million people with diabetes,[1] nearly 36 million people with osteoporosis,[2] and 42 million individuals with thyroid disease.[3] A high proportion of subjects also have thyroid disorders, even in iodine sufficient areas.[4] The patient burden of endocrine illness was estimated in 2000 by Kochupillai et al.,[3] and the figures run into 108 million for the combined burden of all endocrine and metabolic diseases. Thirteen percent women and 9% men in India are thought to be overweight or obese.[5] If Dr. Kochupillai’s figures are valid with a denominator population of 1,028,737,436 (based on the 2001 census data),[6] the 2011 census data which reports an Indian population of 1,210,193,422,[7] can be extrapolated to assume that we have at least 130 million people with endocrinopathy. While the demand–supply mismatch in endocrinology has been highlighted in other countries as well,[8] this overload on existing endocrine services is particularly severe in developing economies such as India. What can be done to improve endocrine care and endocrine Access this article online Quick Response Code: Website: www.ijem.in DOI: 10.4103/2230-8210.91173

services? One obvious solution would be to increase the number of endocrinologists across the country. Newer fellowship programs have begun to offer D.M. and D.N.B. degrees to a greater number of medical graduates,[9] thus increasing the talent pool available. Indian medical students have also begun to prefer choosing endocrinology as a career option.[10] However, this inclination to pursue endocrinology as a career alone is not enough to handle the vast burden of endocrine morbidity. Endocrinologists have been using, with success, the services of paramedical staff, such as dieticians, psychologists, physiotherapists, and multipurpose diabetes workers,[11,12] in managing their patients, especially those with diabetes. Other endocrinologists have chosen to empower a motivated group of patients, using them as lay educators for their peers. Such peer educator or lay educator projects have been successful in improving the quality of care too.[13] Yet, such approaches to empowerment seem to be utilized only for patients with diabetes, and that too, not on a sufficiently large scale. Empowerment means different things to different people. It assumes that we treat patients as equals, listen to their concerns, and invite and encourage them to be involved in decision-making processes according to their own capabilities; and show confidence in their ability to take co-responsibility for daily management. It also demands that we ensure access for patients to ongoing education and self-management support from all relevant disciplines, recognizing the holistic nature of needs of patients and the complementary value of paramedical professions in relation to provision of support for social, psychological, educational and practical support needs.[14] It is routine for endocrinologists to teach their patients with diabetes the difficult nuances of self-monitoring, selfadjustment of insulin dosage, and sick day management. At the same time, it is surprising that endocrinologists do

Corresponding Author: Dr. Sanjay Kalra, Department of Endocrinology, Bharti Hospital and BRIDE, Kunjpura Road, Karnal – 132 001, Haryana, India. E-mail: [email protected]

Indian Journal of Endocrinology and Metabolism / Jan-Feb 2012 / Vol 16 | Issue 1

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Kalra, et al.: Patient empowerment in endocrinology

not spend time in explaining (much simpler) concepts of thyroid or fracture risk reduction to their clients. Perhaps, the nature of diabetes, which requires selfmanagement on a day-to-day basis, makes the need for patient education and participation more self-evident, while the chronic nature of other endocrine illnesses makes its need seem less critical to the health care provider. It is also possible that amongst endocrinologists, diabetes carries a perception of a dynamic, severe disease, needing multiple therapeutic options and patient participation, while other endocrine illnesses are perceived to be mild and indolent. Perhaps, once upon a time, this was true, but not any longer. The massive burden of endocrine and metabolic morbidity and mortality calls for action to be spearheaded by endocrinologists for the sake of their patients, and for the sake of endocrinology. One evidence-based approach, by which we can handle our growing patient load, is by involving our endocrine patients as active educated partners in their management. In close cooperation with relevant paramedical groups, we need to make it a priority that all patients are educated about their condition and that they learn what they can do to improve their condition and be a partner in the care process. Furthermore, we must make sure that patients feel encouraged and supported in being active partners in the care and decision-making process. In this way, by building partnerships for better care, endocrinologists can reduce the burden of care and help improve treatment outcomes in a sustainable way. This move should include all endocrine and metabolic patients, and not be limited to people with diabetes alone. Most endocrine diseases are chronic in nature and need day-to-day management, which can be improved if patient education and participation is integrated into the treatment process. For all diseases, patient’s understanding of the basic etiology, pathophysiology, symptoms of undertreatment or overmedication, and symptoms suggestive of impending crisis or need for medical consultation is necessary to ensure optimization of therapy. Empowering the patient with this knowledge during the initial stages of consultation and at regular intervals thereafter can help improve adherence to prescribed therapy. Empowerment, in the form of education and involvement of patients as partners in the care process, also facilitates proactive health care-seeking behavior. For example, a patient who has been explained the symptoms of overtreatment with thyroxine or insulin, or the side effects 2

of calcium or testosterone, or the symptoms suggestive of impending Addisonian crisis or myxedema coma, will seek endocrine care earlier than an uninformed peer. Early and appropriate endocrine care will certainly improve outcomes. Empowerment also is about helping the patient decide his or her therapeutic goals in conjunction with the endocrinologist and other health care providers.[15] A person with polycystic ovarian disease or late-onset congenital adrenal hyperplasia will be able to plan her obstetric career (and other aspects of treatment) once she has an idea of the natural history of the disease and the limitations/ benefits of various therapeutic modalities. This will also help improve coping skills which are an essential part of dealing with chronic disease.[16] As the pandemic of endocrine and metabolic diseases grows, endocrinologists will find it more and more challenging to manage their patients optimally. To do so, we need help. And what better fellow soldier to enlist in the war against endocrine disease than the patient her/himself ? One can train the existing diabetes nurses and paramedical staff to provide endocrine education. One can create a separate cadre of endocrine nurses to carry out the task of educating and empowering patients. One can also begin by direct endocrinologist–patient training during, or apart from, regular outdoor consultations. The process can be facilitated by the use of various media, including internet, television, radio and print media. The Thyroid Society of India, e.g. has a portal which provides patient education related to thyroidology (www. indianthyroidsociety.com). Similarly, the ESI offers patient information at its portal http://www.endocrinesocietyindia. org/. The validated tools and resources available for diabetes can be utilized, after modification, for other chronic diseases as well.[17] The ESI has also taken a lead by encouraging members to hold educational and diagnostic camps for various endocrine illnesses. The first such camp was held on 3 September 2011 at Allahabad by Dr. Sarita Bajaj. The IJEM supports the movement to empower patients in all fields of endocrinology and metabolism, including diabetes. With this editorial, IJEM hopes to spearhead a national campaign for endocrine awareness in India. It hopes that this will motivate endocrinologists to include patient education as an integral part of all disease management. It should also stimulate various stakeholders, including the government, social organizations and community leaders, to promote prevention programs, which will check the



Kalra, et al.: Patient empowerment in endocrinology

rapidly increasing pandemics of endocrine and metabolic diseases.

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IDF Diabetes Atlas. 4th ed. International Diabetes Federation; 2009. Facts and statistics about osteoporosis and its impact. Available from: http://www.iofbonehealth.org/facts-and-statistics/references. html#fsref-161. [Last accessed 2011 Oct 26]. Kochupillai N. Clinical endocrinology in India. Curr Sci 2000;79: 1061-7. Usha Menon V, Sundaram KR, Unnikrishnan AG, Jayakumar RV, Nair V, Kumar H. High prevalence of undetected thyroid disorders in an iodine sufficient adult south Indian population. J Indian Med Assoc 2009;107:72-7. Arnold F, Parasuraman S, Arokiasamy P, Kothari M. Nutrition in India. National Family Health Survey (NFHS-3) India 2005-06. International Institute for Population Sciences; 2009. p. 43. Variation in Population since 1901. Available from: http://www. censusindia.gov.in/Census_Data_2001/India_at_glance/variation. aspx. [Last accessed on 2011 Oct 27]. Figures at a glance-India. Available from: http://www.censusindia. gov.in/2011-prov-results/paper2/prov_results_paper2_har.html. [Last accessed on 2011 Oct 27]. Toledo FG, Stewart AF. The academic and clinical endocrinology

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physician workforce in the U.S (Editorial). J Clin Endocrinol Metab 2011;96:942-4. Bajaj S, Kalra S. AV Gandhi Award for excellence in endocrinology. Indian J Endocrinol Metab 2011;15:227-8. Kalra S, Agrawal N, Unnikrishnan AG, Sahay R, Kalra B. Pursuit endocrinology – perceptions, understanding and reactions of students undertaking internal medicine training regarding endocrinology. Endocrine Abstracts 2010;22:177. Kalra S, Kalra B. Answering the urgent need for diabetes care professionals in Northern India. Diabetes Voice 2006;51:11-3. Kalra S, Kalra B, Kumar N. Prevention and management of diabetes: The role of the physiotherapist. Diabetes Voice 2007;52:12-5. Agrawal N, Kalra S, Kalra B, Agrawal S. Telephonic patient support: The didi (elder sister) project. Pediatric Diabetes 2010;11 Suppl 14:S65. Skovlund SE, Peyrot M; The DAWN International Advisory Panel. The Diabetes Attitudes, Wishes, and Needs (DAWN) Program: A new approach to improving outcomes of diabetes care. Diabetes Spectrum 2005;18:136-42. Kalra S, Baruah M, Ganapathy M, Ganie A, Sahay R, Unnikrishnan A. Patient centered approach to diabetes management. The Dawn Philosophy. Internet J Fam Pract 2010;8. Kalra S, Kalra B, Agrawal N, Sahay R, Unnikrishnan A, Chawla R. Coping strategies in diabetes. Internet J Geriatr Gerontol 2010;5. Tools and Resources. Available from: http://www.dawnstudy.com/ ToolsAndResources/default.asp. [Last accessed on 2011 Nov 11].

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