The Spanish Association of Thyroid Cancer (AECAT) has released the results of its "Survey on the experience and quality of life of people with hypoparathyroidism in Spain," which shows that around 20 percent of those affected stop participating in social activities due to the illness.
"Hypoparathyroidism cannot be understood solely through analytical figures or biochemical parameters," explained the president of this organization, Arantxa Sáez, who added that "listening to the patient becomes essential." With this premise, the study was carried out, developed by Nephila Health Partnership and presented coinciding with the celebration this Monday, June 1, of World Hypoparathyroidism Day.
Within the framework of this day, AECAT has launched the campaign "Numbers don't tell the whole story," supported by the pharmaceutical companies Alexion and Ascendis Pharma. The initiative emphasizes that this "rare, chronic, and very limiting disease" affects "thousands of people in Spain, most as a consequence of thyroid surgery."
"However, despite its impact on patients' quality of life, information about their real experience and unmet healthcare needs is still limited," lament from this entity. The survey is part of the "Hypoparathyroidism Observatory," a multidisciplinary action that "was born with the aim of promoting knowledge, visibility, and initiatives that improve the diagnosis, treatment, and quality of life of patients in Spain."
Deficiencies in the information and management of hypoparathyroidism
The analysis of the data reveals, according to AECAT, that "only one-third of participants report having received pre-surgical information about the risk of developing hypoparathyroidism, which highlights significant areas for improvement in the diagnostic and patient information process." Likewise, they point out that "the coexistence of comorbidities is high, especially renal, bone, and musculoskeletal manifestations, which demonstrates the clinical complexity and systemic impact of the disease."
"Conventional treatment, based on calcium and active vitamin D, constitutes the practically universal therapeutic basis for hypoparathyroidism," the association continued, adding that "there are relevant limitations associated with both access to and management of treatment."
In this context, they detail that "one in four patients declares difficulties with access or prescription, and they point to drug shortages and administrative barriers as the most frequent problems", while "the perception of insufficient knowledge of the disease by some healthcare professionals emerges".
Therapeutic Overload and Persistent Symptoms
Under the heading "THERAPEUTIC OVERLOAD", the organization indicates that "the results show signs of therapeutic overload and a large majority of participants express a preference for therapeutic alternatives other than current conventional treatment". In parallel, "they highlight relevant deficits in information and care experience", since "only four out of 10 patients say they have received information about complications associated with hypoparathyroidism".
On the other hand, the entity highlights that the report "shows a high persistent symptomatic burden despite conventional treatment". "Cognitive impairment - difficulty concentrating and memory loss - is the most frequent symptom with the greatest perceived functional impact, followed by fatigue and emotional state alteration, limitations in sleep quality, and impact on physical, work, and social activity", it has reported.
In this regard, it has been emphasized that "seven out of 10 perceive that the disease is not well or fully controlled and 43 percent that it impacts emotional well-being and interpersonal relationships moderately or to a great extent, which shows an impact that transcends the physical level".
Proposals to Improve Patient Care
Given this scenario, AECAT proposes "to reinforce information and the pre-surgical consent process", as well as "strategies for the prevention of hypoparathyroidism during thyroid and cervical surgery". Among its recommendations are also "to improve the early detection and initial management of hypoparathyroidism" and "to promote multidisciplinary and coordinated care models", in addition to "incorporating a comprehensive approach to complications and comorbidities".
The association also proposes "to improve access and continuity of treatments" and "to promote equitable access to new therapeutic alternatives". To this it adds the need to "reduce the therapeutic burden and improve adherence" and "to enhance the training and capacity building of healthcare professionals", along with "integrating the patient's perspective and quality of life in healthcare" and "to promote research and knowledge generation in hypoparathyroidism".