Laryngeal cancer cured, voice lost
A life-enhancing app
The primary goal of cancer treatment — including cancers of the head and neck — is to eliminate tumors. However, a frequent side effect of the treatment of laryngeal cancer is the patient’s loss of the ability to speak — a high price to pay in the sphere of social interaction. An app developed in Italy now gives these patients a voice.
Maurizio Sbraga, product manager in the Oncology franchise at Merck KGaA, Darmstadt, Germany, in Italy
© Merck KGaA, Darmstadt, Germany
Enrico Mariano’s gaze falls on the smokers who are lighting up in front of the entrance of the pizzeria, and he pauses for a moment. Is it envy, or disgust? A bit of both, he indicates by raising his hand and gently waving it back and forth. He types on his tablet computer, and a masculine voice says, “I’m fine.” Mariano’s face relaxes. For 25 years he was more or less a heavy smoker. Then he was diagnosed with laryngeal cancer, and many things ended overnight: not only his smoking but also his job as a teacher, because the operation that was part of his treatment had taken away his ability to speak. After that, his nicotine addiction was the least of his problems.
“The app supports the patients as they move through the different stages of therapy.“
Product manager in the Oncology franchise at Merck KGaA, Darmstadt, Germany, in Italy
Tumors of the head and neck account for 5% of all cases of cancer worldwide. In the past decade, the incidence of these types of cancer has increased significantly, with more than 600,000 new cases occurring annually all over the world. Many of the survivors have to struggle with the side effects of chemotherapy and the consequences of operations. One of the most difficult consequences, especially in terms of individuals’ social interactions, is the loss of their voice. If the larynx is partially removed in the early stages of cancer, the patient’s ability to speak can be limited; in the case of a complete removal, called a laryngectomy, this faculty may be completely destroyed.
Without the larynx, the esophagus is no longer separated from the trachea (windpipe). The patient therefore has to receive a tracheostomy, an artificial opening in the neck that enables him or her to breathe. In addition, the patient can no longer form a voice because the vocal cords that create sound are located in the larynx. The treatment of other tumors of the head and neck can also result in patients losing their voice and having to cope with a limited ability to communicate with doctors and caregivers, friends, partners, or the cashier in the supermarket.
Advanced laryngeal cancer often means losing one’s voice
As is often the case for many other patients, for Enrico Mariano, the diagnosis of advanced-stage laryngeal cancer came too late to save his voice. He will soon have the difficult task of learning to use a speaking valve via his tracheostomy. In summer 2014, Mariano’s temporary loss of his voice threatened to plunge him into depression. But then a physician told him about the free app “La mia voce”, which was developed by Merck KGaA, Darmstadt, Germany — and since then Mariano has been able to speak again. “My voice is not as flexible as it used to be in a normal conversation, but it works,” he says. The computer voice is even somewhat similar to his former voice, he jokes.
The "La mia voce" app contains more than 130 spoken sentences in categories such as "Conversation", "Meals," and "Pain", which can be accessed via icons
© Merck KGaA, Darmstadt, Germany
It all began when Maurizio Sbraga, a product manager in the Oncology franchise at Merck KGaA, Darmstadt, Germany, in Italy, was told by Lisa Licitra, a renowned oncologist from the National Cancer Institute in Milan that voiceless patients were in urgent need of help. Sbraga subsequently submitted an idea for an app to the Customer Innovation Initiative, a pilot project in which Merck KGaA, Darmstadt, Germany, gathers customers’ ideas on how to improve the company’s products and services. Sbraga then developed this application for smartphones and tablets. The app contains more than 130 standard sentences from categories of daily life, and it can also vocalize words that patients have typed themselves.
“Our primary concern was to provide a good service for patients who have had cancers of the head and neck. We wanted to show that we are familiar with these cancers, such as laryngeal cancer, and with their consequences — especially those affecting the patients’ social interactions. And we wanted to show that we would like to help them,” Sbraga explains. “The app supports the patients as they move through the different stages of therapy.” However, Sbraga adds that in many cases physicians have not yet found the best way to heal this type of cancer without damaging the patient’s voice: “Unfortunately, at this point we are no longer talking about healing, but rather about ongoing care.”
Restoring the quality of life
Various physicians and patients’ associations in Italy are supporting the project. As a result, the app has now reached a large proportion of the potential patients in Italy and has been downloaded more than 3,000 times. Umberto Tassini, a board member of the FIALPO (Italian Federation of Laryngectomy and Oncology Patients Associations) and AILAR (Italian Association of Laryngectomy) federations, which represent the interests of laryngectomy patients, is enthusiastic about the app and organizes loans of computer tablets to patients. He himself had a laryngeal operation, and now speaks with an “esophageal voice.” To create this voice, the esophagus is made to vibrate by sucking in air. He says he is only too familiar with the process, and with the feelings associated with the loss of one’s voice: “We are talking here about the quality of life, which we are enhancing for the patients.”
The app is currently being developed for use in other countries as well. Not only has it been presented in the international healthcare portal myhealthapps.net as one of the best health-related apps, but it also received the Customer Innovation Initiative Award of Merck KGaA, Darmstadt, Germany. In 2014, Merck KGaA, Darmstadt, Germany, won the Italian Aboutpharma Digital Award together with the patient association.