Integrated care of muscular dystrophies in Italy. Part 2. Psychological treatments, social and welfare support, and financial costs

Lorenza Magliano 1, Marianna Scutifero 2, Melania Patalano1, Alessandra Sagliocchi 1, Antonella Zaccaro 1, Federica Civati 3, Erika Brighina 3, Gianluca Vita 4, Sonia Messina 4, Maria Sframeli 4, Maria Elena Lombardo 5, Roberta Scalise 5, Giulia Colia 6, Maria Catteruccia 6, Angela Berardinelli 7, Maria Chiara Motta 7, Alessandra Gaiani 8, Claudio Semplicini 8, Luca Bello 8, Guja Astrea 9, Giulia Ricci 9, Maria Grazia D’Angelo 3, Giuseppe Vita 4, Marika Pane 5, Adele D’Amico 6, Umberto Balottin 7, Corrado Angelini 8, Roberta Battini 9 and Luisa Politano 2

1 Department of Psychology, Campania University “Luigi Vanvitelli”, (former denomination: Second University of Naples), Italy; 2 Cardiomyology and Medical Genetics, Department of Experimental Medicine, Campania University “Luigi Vanvitelli”, Italy; 3 NeuroMuscular Unit, Department of NeuroRehabilitation, IRCCS “E. Medea”, Bosisio Parini (Lc), Italy; 4 Department of Neurosciences, University of Messina; 5 Department of Paediatric Neurology, Catholic University, Rome, Italy; 6 Unit of Neuromuscular and Neurodegenerative Diseases, Bambin Gesù Children’s Hospital, Rome, Italy; 7 Child Neuropsychiatry Unit, Department of Brain and Behavioral Sciences, University of Pavia, Italy; 8 Department of Neurosciences, University of Padova, Italy; 9 Developmental Neuroscience, IRCCS Stella Maris, Pisa Italy; 10 Department of Brain and Behavioural Sciences, Child Neuropsychiatry Unit, University of Pavia, Italy

This paper describes the psycho-social treatments received by 502 patients with MDs and their relatives, and the costs for care sustained by the families in the previous six month period.

Data were collected by the MD-Care Schedule (MD-CS) and the Family Problems Questionnaire (FPQ).

Psycho-educational interventions were provided to 72 patients (14.3%), and social/welfare support to 331 patients (65.9%). Social/welfare support was higher in patients with DMD or LGMD, in those showing more severe disability, and in patients who were in contact with centres located in Northern Italy.

Psycho-educational interventions were received by 156 (31%) relatives, and social/welfare support by 55 (10.9%) and mainly provided by Family/Patients Associations (83.6%).

Relatives with higher educational levels, who spent more daily hours in the assistance of patients with DMD, and in contact with centres in Central Italy more frequently benefited from psycho-educational interventions.

In the previous year, costs for care were sustained by 314 (63.9%) relatives. Financial difficulties related to patient’s condition, were higher in families of patients who needed more intensive rehabilitation and daily hours of caregiving, and in families who lived further away from the reference’s centre.

These results showed that psycho-social aspects of MDs care are only partially met in Italy, and that ad hoc supportive interventions for these patients and their families should be potentiated.

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