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      Facioscapulohumeral  Gravis        Muscular Dystrophy  Linb-Girdle                    Becker Muscular   Mu...
• Myasthenia Gravis (n=29)              • Others: Facioscapulohumeral Muscular n= 45                Dystrophy, Becker Musc...
Structured                Sociodemographic and health data Interview                • SF-36 health survey questionnaireHea...
Anxiety/                 The Hospital Anxiety and Depression Scale (HAD)DepressionSelf-efficacy    General Self-Efficacy S...
Group videoconference with a1           psychologist     Individual videoconference2         with a neurologist    Forum a...
Group videoconference with a      1              psychologist 1 hour session  every two weeks 7 sessions 4/5 participan...
http://www.eitb.com/es/videos/detalle/809203/ed-asistencia
Online sessions1. Emotional reactions during neuromuscular disease:  Stress: distress, eustress; Anxiety: physical, cognit...
Individual videoconference        2             with a neurologist   Once every week   Individual sessions   Mean durat...
Forum about biopsychosocial3             topics
p < .05
p < .05
p < .05
p < .05
•   Sample not randomized•   Difficulties obtaining the sample due to diagnosis    delay, geographic dispersion, low preva...
Health-related quality of life is improved  Feeling of isolation can be reduced   Health care costs can be reduced        ...
•   Dr. Gerd Ahlström (Professor of the Faculty of Health Sciences and Dean of the University of    Jönköping, Sweden)•   ...
Neuro-e-motion    Neuromuscular andNeurodevelopment Disorders     Research Group     Neuro-e-Motion        Faculty of Psyc...
Thank you
Teleassistance and health related quality of life in people with neuromuscular diseases. Esther Lazaro.
Teleassistance and health related quality of life in people with neuromuscular diseases. Esther Lazaro.
Teleassistance and health related quality of life in people with neuromuscular diseases. Esther Lazaro.
Teleassistance and health related quality of life in people with neuromuscular diseases. Esther Lazaro.
Teleassistance and health related quality of life in people with neuromuscular diseases. Esther Lazaro.
Teleassistance and health related quality of life in people with neuromuscular diseases. Esther Lazaro.
Teleassistance and health related quality of life in people with neuromuscular diseases. Esther Lazaro.
Teleassistance and health related quality of life in people with neuromuscular diseases. Esther Lazaro.
Teleassistance and health related quality of life in people with neuromuscular diseases. Esther Lazaro.
Teleassistance and health related quality of life in people with neuromuscular diseases. Esther Lazaro.
Teleassistance and health related quality of life in people with neuromuscular diseases. Esther Lazaro.
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Teleassistance and health related quality of life in people with neuromuscular diseases. Esther Lazaro.

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Teleassistance and health related quality of life in people with neuromuscular diseases

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Teleassistance and health related quality of life in people with neuromuscular diseases. Esther Lazaro.

  1. 1. Research lines:1) Tele-assistance - people with neuromuscular disorders.2) Serious games - children.
  2. 2. Extracted from: 1. Journal of Telemedicine and Telecare, 2. Cognitive Behaviour Therapy, 3. Perspectives in Psychiatric Care
  3. 3. Extracted from: 4. Neurological Sciences, 5. Disability and Rehabilitation
  4. 4. Myasthenia Facioscapulohumeral Gravis Muscular Dystrophy Linb-Girdle Becker Muscular Muscular Dystrophy Dystrophy
  5. 5. • Myasthenia Gravis (n=29) • Others: Facioscapulohumeral Muscular n= 45 Dystrophy, Becker Muscular Dystrophy, Limb- girdle Muscular Dystrophy, etc. (n=16) Exp. Gr. Contr. Gr. Sample Total (n=45) (n=24) (n=21) Male 23 11 12Gender Female 22 13 9 Mean 50.56 45.38 56.48 Age Standard 14.075 11.798 14.379 Deviation
  6. 6. Structured Sociodemographic and health data Interview • SF-36 health survey questionnaireHealth Status • EuroQoL-5D (EQ-5D) • Sickness Impact Profile (SIP) World Health Organization Disability Disability Assessment Schedule II (WHO-DAS II) Social The MOS social support survey Support
  7. 7. Anxiety/ The Hospital Anxiety and Depression Scale (HAD)DepressionSelf-efficacy General Self-Efficacy Scale (GSE) Coping The COPE InventoryStressful life The Holmes and Rahe Stress Scale events
  8. 8. Group videoconference with a1 psychologist Individual videoconference2 with a neurologist Forum about biopsychosocial3 topics
  9. 9. Group videoconference with a 1 psychologist 1 hour session every two weeks 7 sessions 4/5 participants per group Program used: Skype
  10. 10. http://www.eitb.com/es/videos/detalle/809203/ed-asistencia
  11. 11. Online sessions1. 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
  12. 12. Individual videoconference 2 with a neurologist Once every week Individual sessions Mean duration of each session: 15 minutes Aim: to solve general doubts about the disease
  13. 13. Forum about biopsychosocial3 topics
  14. 14. p < .05
  15. 15. p < .05
  16. 16. p < .05
  17. 17. p < .05
  18. 18. • 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
  19. 19. Health-related quality of life is improved Feeling of isolation can be reduced Health care costs can be reduced High levels of satisfaction
  20. 20. • 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)
  21. 21. Neuro-e-motion Neuromuscular andNeurodevelopment Disorders Research Group Neuro-e-Motion Faculty of Psychology and Education UNIVERSITY 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)
  22. 22. Thank you

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