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Health Care Services For Patients With Pws


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Health Care Services For Patients With Pws

  1. 1. Health care services for patients with PWS Dorica Dan – president APWR/ ANBRaRo Prof. Dr. Maria Puiu, UMFT, vicepresident ANBRaRo Eastern European Conference about PWS Timisoara 24-25 Aprilie 2009
  2. 2. The start <ul><li>- initiating services for patients with PWS in 2004: </li></ul><ul><ul><li>Center for Information about Rare Diseases Zalau (RPWA) -2005 </li></ul></ul><ul><ul><ul><li>Providing information and counseling for parents </li></ul></ul></ul><ul><ul><ul><li>Helping patients to get a genetic test in country and abroad </li></ul></ul></ul><ul><ul><ul><li>Providing information for professionals through different events: seminars, conferences, workshops; </li></ul></ul></ul>
  3. 3. The first research project coordinated by UMF TImisoara (APWR – one of the partners) <ul><ul><ul><li>The research will enable: </li></ul></ul></ul><ul><ul><ul><li>establishment of a strategy in definition for genotypes PWS/AS </li></ul></ul></ul><ul><ul><ul><li>correct identification of the genetic defect, </li></ul></ul></ul><ul><ul><ul><li>desciphering the variation in gene expression/ gene sub sequention and their regulation pathway  mechanism, </li></ul></ul></ul><ul><ul><ul><li>the involvement of epigenetic factors that modulate (enhancing/decreasing) the severity of phenotypic aspects into the diagnosis protocols </li></ul></ul></ul>
  4. 4. NoRo Center <ul><li>Increase independent living skills and vocational opportunities through life skill training </li></ul><ul><li>Provide behavioral therapy as needed for unique sensory and behavioral needs </li></ul><ul><li>Train professionals in behavioral therapy techniques so that they may utilize these tools within, and outside of, the center. </li></ul>
  5. 5. Aims… <ul><li>Support the transition of children into the school system </li></ul><ul><li>Deliver services tailored to the families needs </li></ul><ul><li>Development of specialized classrooms (exercise, computer, art, music) that allow for creative and enjoyable playtime for the children </li></ul><ul><li>Provide early identification and intervention services through the development of individualized plans for each child; </li></ul>
  6. 6. Weight management <ul><li>Interdisciplinary approach on the weight management in the Rehabilitation Hospital ”Acasa” and NoRo Center; </li></ul><ul><ul><li>Multi-disciplinary approach-program should include psychosocial, behavioral, exercise, communication interventions, a child’s obesity is directly correlated with many factors </li></ul></ul>
  7. 7. Critical Components of a Successful Management Intervention in PWS <ul><li>Family based - must include parents and target child </li></ul><ul><li>parents and kids team up to make lifestyle, diet and exercise changes </li></ul><ul><li>children’s weight are correlated directly with the behaviors and reinforcement of the family </li></ul>
  8. 8. Professionals <ul><li>the right range of professionals to implement this program will include: </li></ul><ul><ul><li>a dietitian, a mental health professional, an exercise specialist, nurse or physician </li></ul></ul><ul><ul><li>a physical therapist – to plan the exercise program; </li></ul></ul><ul><ul><ul><li>could research PWS plan a program to maximize what can be done? Any proposals from the audience? </li></ul></ul></ul><ul><ul><ul><li>A physical therapist able to train others or write some exercise guidelines for an instructor to use? </li></ul></ul></ul>
  9. 9. Behavior therapy component included in program design <ul><li>increase understanding of healthy diet and exercise programs </li></ul><ul><li>promote an understanding of basic behavior modification principles </li></ul><ul><li>self-monitoring </li></ul><ul><li>social reinforcement-caregiver praise, positive reinforcement given if child meets well defined goals </li></ul><ul><li>modeling-parents must reinforce good health habits through conscious awareness that their behaviors influence that of their children </li></ul>
  10. 10. Support group aspect <ul><li>both parents and children with obesity can feel isolated </li></ul><ul><li>an effective program could help learn coping strategies from individuals in similar situations as themselves </li></ul><ul><li>Support groups may also foster independence and social integration </li></ul>
  11. 11. Individualized Action Plan <ul><li>each patient needs a team of professionals consulting and sharing ideas weekly about the most effective strategies to take in order to achieve a healthier life for that patient </li></ul><ul><li>disabilities, weights, body types may vary each situation needs to be looked at separately </li></ul>
  12. 12. Exercise Component <ul><li>Toning and strengthening, flexing and stretching, and formal physiotherapy are all useful for patients with PWS. </li></ul><ul><li>Activities they may find acceptable include: walking, bicycling, dancing, and ball playing. </li></ul><ul><li>Also, including pressure/stress free exercise into the everyday schedule is critical. (Ex. Taking a 20 min. walk every night after dinner, dancing in front of the mirror to a favorite song every morning for 10 min. as part of routine). </li></ul>
  13. 13. Sample diet Plan for Parents to Use at Home <ul><li>Stoplight Diet </li></ul><ul><li>Link foods to signals on a traffic light so that better diet choices can be made: </li></ul><ul><ul><li>Red foods: high calorie foods such as soda, cookies, chips, are rarely to be eaten </li></ul></ul><ul><ul><li>Yellow foods: moderate calorie foods such as cereal, lean meats like chicken, are the basic foods needed for balanced nutrition </li></ul></ul><ul><ul><li>Green foods: vegetables, go ahead can be eaten without restriction </li></ul></ul>
  14. 14. Programs Components of Day Programs: <ul><li>Programs Components of Day Care Programs: </li></ul><ul><li>individualized (person centered planning ) to reflect the child's developmental level, strengths and needs, and likes and dislikes (the specific goals, the reinforces and the teaching methods are chosen based on what is appropriate for the particular child) </li></ul><ul><li>data-based and monitored frequently using behavior observation methods such as graphing, inter-observer reliability, so that clinical decisions are based on data (to determine when the child has progressed enough to have specific goals, specific methods of instruction, or larger program parameters adjusted and/or to make the transition to less formal training and/or a more natural setting) </li></ul>
  15. 15. …. <ul><li>involve the parents/caregivers directly in the child's treatment and give them the training they need to supplement the program at home </li></ul><ul><li>occur in Least Restrictive Environment -naturalistic setting that allows for interactions with non-disabled peers as frequently as possible ( as close as possible to reality) </li></ul>
  16. 16. … <ul><li>include community based element to ensure integration and independent functioning in community settings (supermarket, library, post office) </li></ul><ul><li>involve self-advocacy exercises where self-esteem is encouraged through awareness of rights presentations and encouragement of self-expression </li></ul><ul><li>have staff that are well-trained in general knowledge of PWS and autistic behaviours, medical and dietary needs of the patients; </li></ul>
  17. 17. Thank you!