IBSA’s Initiatives Focused on the Patients’ Experience and a Greater Knowledge of Thyroid Dysfunctions
The patient satisfaction and quality of life of people being treated for hypothyroidism are of considerable interest, and are very often associated with a lack of confidence and trust and with negative experiences with health care professionals. It is precisely on this aspect that IBSA would like to focus the general attention on the occasion of the International Thyroid Awareness Week (ITAW), celebrated each year from May 25th to 31st, that aims at raising awareness of the prevention of thyroid diseases and awareness of early recognition and adequate treatment of thyroid disorders to prevent further complications.
Thyroid dysfunctions are quite common: it is estimated that over 1.5 billion people worldwide are at risk of thyroid disorders, and that hypothyroidism alone affects 5% of the world’s population1, with a greater incidence among women. Early diagnosis is essential in the treatment of these conditions, but – since symptoms are almost always nonspecific (weight gain, decreased energy and malaise, sensitivity to cold, mood swings, to name but a few) – a timely and correct identification of the disease is difficult, compromising the quality of life of the people affected.
To shed some light on the matter, on May 25 at 2:00 pm (CEST), IBSA – in collaboration withThyroid Federation International(TFI), the international organisation of patients with thyroid diseases – promotes the webinar “Patient-centered approach to hypothyroidism” (registrations at this link), a meeting aimed at giving voice to some of the issues that often trouble hypothyroid patients, impacting their satisfaction with the management of the disease, as well as their quality of life.
These aspects have been evaluated in particular by the survey “E-MPATHY” (E-Mode Patient self-Assessment of THYroid therapy) – carried out by TFI with the contribution of IBSA – which electronically enrolled a total of 3,915 hypothyroid patients from 68 countries2. The survey investigated the impact of hypothyroidism on the patients’ satisfaction with the quality of daily life and their experiences with doctors and healthcare professionals: it emerged that about 50%of the intervieweesare dissatisfied with the management and treatment of the disease, mostly due to negative experiences with their doctor, characterised by a severe lack of trust; and that for the majority (nearly 70%) hypothyroidism had negatively affected their daily life2.
“Some aspects of hypothyroidism management continue to pose a challenge. Because symptoms are often non-specific, many people living with a thyroid disorder are currently undiagnosed and they can spend many years struggling with a poor quality of life before getting a diagnosis. However, another consequence of the non-specific symptomatology is unfortunately that up to 10-15% of those with a diagnosis of hypothyroidism do not fulfil the biochemical requirements for such a diagnosis. Importantly, at least 5-10% of those treated with thyroid hormones report a poor QoL, due to persistence of symptoms of hypothyroidism”, commented Laszlo Hegedüs,Emeritus Professor at the Department of Endocrinology in Odense (Denmark) and former president of the European Thyroid Association (ETA). “Increasing the awareness of thyroid disorders could stimulate patients to talk with their doctors, because only in the hands of a healthcare professional thyroid disorders can be well managed, which includes avoiding under- as well as over-substitution with thyroid hormone”.
“Faced with a condition such as hypothyroidism – and the difficulty in recognising it – patients need even more to be listened to and accompanied along their diagnosis and treatment path”, pointed out Ashok Bhaseen, Presidente of Thyroid Federation International. “As a Patient Organisation, we become the spokespersons for these still unsatisfied needs; our task is to echo them among doctors, institutions and the whole community, in order to improve the quality of life of the people living with thyroid dysfunction”.
To raise awareness of these conditions and support patients in their daily management, IBSA launches “Feel Thyroid”, the international campaign aimed at raise awareness on hypothyroidism in particular. Learning to recognise the symptoms of the disease and discussing it with the doctor as soon as possible are critical steps in order to obtain an early diagnosis or to improve the management of the disease, defined on the basis of one’s specific needs.
All the contents of the Feel Thyroid campaign are accessible on the dedicated platform www.feelthyroid.com, which offers useful information on the condition and, above all, interactive tools which allow to stimulate the patients in their daily management and to draw ideas for a proactive discussion with their doctor. The goal is to improve people’s quality of life favouring a greater collaboration and synergy between patient and specialist, in order to address hypothyroidism, promote dialogue and identify the most appropriate treatment.
“IBSA has always been attentive to the Person: helping improve the treatment path and the quality of life of the many patients who have to live with a thyroid disease every day is part of our commitment”, explainedMarialuisa Fino,Therapeutic Area Manager Endocrinology at IBSA. “We are pleased to announce the international launch of Feel Thyroid, a campaign born from listening to people’s real needs and designed to support them in their daily struggle with hypothyroidism. We want the campaign to be a real “empowerment” tool, aimed at increasing the knowledge and awareness of hypothyroidism, at stimulating doctor-patient interaction and, above all, at disseminating an important message: the disease is not a limit, and must not preclude the possibility of leading an active and quality life”.
And precisely in order to spread this message and make accessible all the information contained in the platform, IBSA created the contents of Feel Thyroid not only in English, but also in the original languages of several European geographical areas, including Italy, France, Spain, Germany, Switzerland and Poland.
IBSA Institut Biochimique SA
IBSA (Institut Biochimique SA) is a Swiss multinational pharmaceutical Company, founded in 1945 in Lugano. Today, its products are present in over 90 Countries on 5 continents, through the Company’s 17 subsidiaries located in Europe, China, and the United States. The company has a consolidated turnover of 800 million CHF, and employs over 2,000 people between headquarters, subsidiaries and production sites. IBSA holds 90 families of approved patents, plus others under development, as well as a vast portfolio of products, covering 10 therapeutic areas: reproductive medicine, endocrinology, pain and inflammation, osteoarticular, aesthetic medicine, dermatology, uro-gynaecology, cardiometabolic, respiratory, consumer health. It is also one of the largest operators worldwide in the area of reproductive medicine, and one of the world’s leaders in hyaluronic acid-based products. IBSA has based its philosophy on four pillars: Person, Innovation, Quality and Responsibility.
2 P. Perros, L. Hegedus, E. Vezekenyi Nagy, E. Papini, H.A. Hay, J. Abad-Madronero, A.J. Tallett, M. Bilas, P. Lakwijk, A.J. Poots, The Impact of Hypothyroidism on Satisfaction with Care and Treatment and Everyday Living: Results from E-Mode Patient Self-Assessment of Thyroid Therapy, a Cross-Sectional, International Online Patient Survey, https://pubmed.ncbi.nlm.nih.gov/37134204/
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