SIP 2017 - Key Statement
Paolo Rossi – European Headache Alliance, Italy
"At lessons from the expert patients (EP) : advices for the physicians to improve their care of cluster headache (CH) patients"
Alleanza Cefalalgici Cluster
Cluster headache (CH) in an excruciating form of primary headache characterised by recurrent unilateral, short lasting attacks of very severe headaches and most commonly appearing in clusters, that is active periods separated by pain-free remission periods. Despite the diagnosis of CH is very simple, and rapid and effective treatments for alleviating CH pain induced sufferings are available, data from literature have documented that CH is largely underrecognised, undertreated and underestimated. Barriers to a proper care for CH are strictly connected to its low prevalence. In fact, as for other rare or infrequent disorders CH is not adequately known, apart from few specialists, and - as a consequence - CH patients’ needs are largely unmet. As for other rare or infrequent disorders, a precious but untapped resource is represented by the expert patients. The aim of this project was to collect a list of recommendations from CH expert patients (EP) for the physicians engaged in the CH management, with the purpose to improve their ability in taking care of CH patients.
77% of the EP’ advices could be grouped in 7 main recommendations: 1) Prescribe the correct medication at the right dose and in the right quantities; 2) Consider few clinical clues to make the diagnosis: it is very simple! And educate other doctors; 3) Provide good information and be able to correct the misleading ones; 4) Take the patient seriously, listen to him to recognise his suffering and that CH is a valid medical disorder that can have a significant impact on the person, and support him (care, not cure); 5) Be sensitive to the CH consequences on the patient’s significant ones and provide, if necessary, family and carer’s consultations; 6) Suggest patient to not conceal and to be active in patients’ support; 7) Allow quick access for ECH patients to headache specialists. These commandments have been used as guidelines to propose pragmatic patient-centred changes in health care services dedicated to CH patients. The following actions were started: to encourage the national and international associations focused on headaches to multiply the initiatives to educate the physicians about this disorder; to call upon the EU parliament and the Member States to remove the barriers to the access to effective treatments and to acknowledge that CH is a highly disabling disorder; to invite the headache specialists to refer to the patient associations their CH patients; to encourage the physicians to create facilitated pathways to allow a quick access to headache specialists.
Information about Good Practice Applicant
Paolo Rossi is the Project Leader of the following good practice. He is also Vice President of European Headache Alliance, Chief of Alleanza Cefalalgici Cluster, Chief of the Headache Clinic INI Grottaferrata Research Associate University Centre for Adaptive Disorders and Headache (UCADH), Pavia, Italy.
In addition to that, he is Professor of Clinical Neurology at the Nursing School of the Tor Vergata University in Rome, assistant at the Neuro-Rehabilitation Unit, INI Grottaferrata. Main research areas: headache, pain medicine, clinical neurophysiology, integrative and alternative medicine. Other scientific activities: he is member of the Scientific and Editorial Committee and Reviewer for more than 20 international scientific journals, including Frontier in Neurology, BMJopen, BMCneurology, Complementary and Alternative medicine, Complementary therapies in medicine. He has written more than 70 Medline articles.