Research lines:

1) Tele-assistance - people with neuromuscular disorders.

2) Serious games - children.

Extracted from: 1. Journal of Telemedicine and Telecare, 2. Cognitive Behaviour Therapy, 3. Perspectives in Psychiatric Care

Extracted from: 4. Neurological Sciences, 5. Disability and Rehabilitation

Myasthenia Gravis

Becker Muscular Dystrophy

Facioscapulohumeral Muscular Dystrophy

Linb-Girdle Muscular Dystrophy

n= 45

• Myasthenia Gravis (n=29)

• Others: Facioscapulohumeral Muscular Dystrophy, Becker Muscular Dystrophy, Limb-girdle Muscular Dystrophy, etc. (n=16)

Sample Total (n=45)Exp. Gr. (n=24)

Contr. Gr. (n=21)

Gender

Male 23 11 12Female 22 13 9

AgeMean 50.56 45.38 56.48

Standard Deviation

14.075 11.798 14.379

Health Status

Disability

Social Support

• SF-36 health survey questionnaire• EuroQoL-5D (EQ-5D)• Sickness Impact Profile (SIP)

World Health Organization Disability Assessment Schedule II (WHO-DAS II)

The MOS social support survey

Structured Interview

Sociodemographic and health data

Anxiety/ Depression

The Hospital Anxiety and Depression Scale (HAD)

Self-efficacy General Self-Efficacy Scale (GSE)

Coping The COPE Inventory

Stressful life events

The Holmes and Rahe Stress Scale

2

3

1 Group videoconference with a psychologist

Individual videoconference with a neurologist

Forum about biopsychosocial topics

1 Group videoconference with a psychologist

1 hour session every two weeks

7 sessions 4/5 participants

per group Program used:

Skype

http://www.eitb.com/es/videos/detalle/809203/ed-asistencia-virtual-pacientes-padecen-enfermedades-raras/

1. Emotional reactions during neuromuscular disease:

Stress: distress, eustress; Anxiety: physical, cognitive and behavioral symptomatology; Anger to other and to oneself; Sadness; Fear; Hope.

2. Negative automatic thoughts:Definition; Consequences: negative emotions, adaptation

difficulties; Detection of negative thoughts and change for alternative ones.

3.Guided visualization.

4. Problems solving skills:Practical examples of problem definition and formulation;

Generation of alternative solutions; Decision making process; Solution implementation and verification

Online sessions

Once every week

Individual sessions

Mean duration of each session: 15 minutes

Aim: to solve general doubts about the disease

2 Individual videoconference with a neurologist

3 Forum about biopsychosocial topics

p < .05

p < .05

p < .05

p < .05

• Sample not randomized• Difficulties obtaining the sample due to diagnosis

delay, geographic dispersion, low prevalence, etc. • Participants who had access to a computer and

internet only benefited• Computer illiterate participants did not benefit• People with higher levels of disability demand this

type of assistance more than those with lower levels• Technical problems

Health-related quality of life is improved

Feeling of isolation can be reduced

Health care costs can be reduced

High levels of satisfaction

• Dr. Gerd Ahlström (Professor of the Faculty of Health Sciences and Dean of the University of Jönköping, Sweden)

• Dr. Giovanni Meola (Prof. in Neurology at the University of Milan; Head of the Department of Neurology at the San Donato Policlinic Institute, Milan, Italy)

• Dr. Corrado Angelini (Prof. of the Neuroscience Departament of the University of Padova; Head of the Department of Neurology at the San Antonio Hospital, Padova, Italy)

• Louise Hastings (Nurse specialized in genetics of the Newcastle Muscle Center, University of Newcastle, Great Britain)

• Dr. Urtizberea (Physiotherapist of the Marine Hospital of Hendaya, France)• Patricia Jouinot (Psychologist of the Department of Pediatrics, Intensive Care and Neurorespiratoy

Care of the Raymond Poincaré Hospital, Garches, France)• PhD. Andone Sistiaga (Neuropsychologist and Professor of the Department of Basic Processes and

their Development of the Faculty of Psychology of the UPV- University of the Basque Country)• Dr. María García Barcina (Head of the Genetics Unit of the Basurto Hospital, Biscay)• PhD. Natalia Martín (Faculty of Psychology of the University of Valladolid and Member of the

Spanish Association of Myasthenia Gravis)• Dr. José Bárcena Llona (Department of Neurology of the Cruces Hospital, Biscay)• Dr. Luis Varona Franco (Department of Neurology of the Basurto Hospital, Biscay)

Neuro-e-motionNeuromuscular and

Neurodevelopment Disorders Research Group Neuro-e-Motion

Faculty of Psychology and EducationUNIVERSITY OF DEUSTO

PhD. Imanol Amayra (University of Deusto)PhD. Juan Francisco López-Paz (University of Deusto)

PhD. Patricia Caballero (University of Deusto)PhD. Luis de Nicolás (University of Deusto)

PhD. Alberto Lasa Zulueta (University of Deusto)BA. Esther Lázaro Pérez (University of Deusto)

BA. Amaia Jometón Elorriaga (University of Deusto)BA. Oscar Martínez Gutiérrez (University of Deusto)

BA. Imanol Pérez Álvarez (University of Deusto)

Thank you