One in two patients have been misdiagnosed, sometimes only after seeing several specialists, and one in two feel that their neurologist does not spend enough time on their concerns. With the result that the patient with cervical dystonia looks elsewhere for the information he needs, primarily online. The point is that, without adequate doctor-patient communication, even the treatment strategies and management of the disease are not optimal.
These are some of the results that emerged from questionnaires administered to some patients (15) with cervical dystonia and disclosed on Orphanet Journal of Rare Diseases. A map, as it was called (Cervical Dystonia Patients Journey Map – CDPJM), which describes the experience of some of these rare patients from France, Italy and the United Kingdom.
“We, the invisible patients of cervical dystonia want assistance”
gianna milano
What is dystonia
Cervical dystonia, or spasmodic torticollis, is in fact a disease that affects 57 to 280 people in a million, and the cause is not known. It can strike at any age, but generally occurs around middle age: it arises slowly, and then stabilizes over months or years. What is it about exactly? A movement disorder that causes involuntary muscle contractions, especially in the neck muscles, and can involve tilting the head to one side or rocking back and forth. Headaches, degeneration of the spine and irritation of the nerve roots can make the disease quite painful.
Diagnosing it, as revealed by the newly presented Dystonia Europe survey and the European Reference Network for Rare Neurological Diseases, carried out by Ipsen, is not always easy.
rare diseases
“Focal dystonia, my way to fight it: dance to walk again”
by FEDERICO BITTI
The map that photographs the patients’ experience
The experience described by patients is that of multiple visits to their doctor, treatments with strong painkillers and muscle relaxants and difficulty in receiving a diagnosis: 53% declare that they have received one or more misdiagnoses. About half of the interviewees believe that the doctor does not spend enough time with them, with the risk of not having an optimal management of the disease, for example by ensuring home care for all patients.
So often we get information outside the doctor’s office: on the internet for about 87%, thanks to self-help groups for about 67% or through information brochures provided by health professionals for 60%. In fact, patients declare that they want more information on the disease and possible treatments, including complementary ones such as physiotherapy and psycho-social support.
The survey results show, on the one hand, the gaps in the care of these patients, on the other
what are the points on which to invest to improve it, as recalled Monika Benson, Executive Director of Dystonia Europe, leading the work: “The development of the first Cervical Dystonia Patients Journey Map has clearly highlighted the significant gaps in the provision of services, such as experienced by patients themselves; and the missed opportunities to provide multidisciplinary care. Addressing the lack of clear clinical pathways for patient care by physiotherapists and psychologists, identified as a major gap in all countries, should be a priority who participated in the study “.