Psychosocial issues in paediatric pulmonary hypertension using a Multidisciplinary approach
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1 Psychosocial issues in paediatric pulmonary hypertension using a Multidisciplinary approach 1 st European Conference on Neonatal Pediatric Pulmonary Vascular Disease October 3-4, 2013 Groningen, The Netherls University Medical Center Groningen Theresia Kazemier, RN, MANP Paediatric cardiology Beatrix Children s Hospital University Medical Center Groningen Paediatric Pulmonary Arterial Hypertension (PAH) Pediatric PAH is a rare disease 1 Incidence: 3 /million children Prevalence: 20 cases/million diagnosed with PAH ipah 0,7/million PAH/CHD 2,2/million other PAH/CTD PAH/HIV Porto-pulmonary PAH PVOD Availability of new medications More knowledge, experiences research But little is known about the impact of PAH on children/families 1 van Loon R L E et al. Circulation 2011;124: Worldwide consensus: National Network in the Netherls Specialized centers to provide optimal care National Network for Pulmonary hypertension in childhood Diagnosis Treatment 7 University Medical Centers 2 Paediatric Cardiology Center 1 National Care Stard Diagnosis Treatment of Pulmonary Hypertension in Children Douwes, JM., van Loon, RLE., Roofthooft, MTR., Berger, RMF. Pulmonale arteriële hypertensie bij kinderen in Nederl. Ned Tijdschr Geneeskd.2011;155:A
2 Psychosocial problems Optimal care At diagnosis during follow up: Feeling overwhelmed Worry / anxiety / uncertainty Difficulties: Medical treatment Child s symptoms /or disabilty function Rare disease Complex care Need for Multidisciplinary approach Dedicated Health Care Team Pediatric medical specialists cardiologist/ pulmonologist other specialists PICU Transplantationteam Achieving diagnosis Treatment plan Overall responsiblity for patient care Follow up Research Clinical trials Education i health l h professionals Wryobek JM, Lippo G, McLaughlin V, Riba M, Rubenfire M. Psychosocial aspects of pulmonary hypertension: a review. Psychosomatics 2007;48: Ogawa, MT, Albrecht DA, Liu EY. Medical non-medical considerations for the outpatient management of children with pulmonary arterial hypertension. Progress in Pediatric Cardiology 27 (2009) Mullen MP, Andrus J, Labella MH, Forbes P, Rao S, Mc Sweeney JE, et al. QOL Parental functioning in pediatric PH. Abstract presented at the 10th International PHA Conference Scientific Sessions, June 22-24/2012. Dedicated Health Care Team Dedicated Health Care Team Follow up Coordination patient care Support child parents Patient education Liaison with home care nurses/professionals Education nurses Research activities Interaction with family Identification of social practicalproblems / requirements Support for children, parents / siblings Improve problem solving skills Encouraging positive coping mechanisms 2
3 Dedicated Health Care Team Dedicated Health Care Team Information homeschool Promote effective coping Tranform medical advices into practical possibilities Developmental play opportunities Procedural support Educational plan appropriate for physical cognitive abilities Appropriate modifications accomodations Consultants education Preparation for procedures Education about disease symptoms Psychological support Dedicated Health Care Team Dedicated Health Care Team Psychological examination Treatment of the child Pediatric cardiologist Network center Local follow up care Cognitive behavior therapy Problem solving therapy Administration EMDR Fear diminishing training needle phobia Advice parents Physiotherapist Referral to local psychologist Dietician 3
4 Adult PH center VU Medical Center Amsterdam University Medical Center Groningen University Medical Center Maastricht St. Antonius Hospital Nieuwegein University Medical Center Nijmegen University Medical Center Rotterdam The child newly diagnosted with paediatric PAH his/her family Ria Bakker / Sira Baars / Mirjam van Gent A child with severe PAH on the PICU screening for lungtransplantationl B. Wijnberg-Williams / G. Wildeboer Transition of an adolescent with PAH B. Coleman 4
5 Contact Sira Baars Principal/Consultant Educational Service UMCG Ria Bakker Principal Play Therapy Team Mirjam van Gent Kim van der Schoot Barbara Wijnberg Dietician Gineke Venema Physiotherapist Joyce Bos Anneke Hegeman Nurse Practitioner Theresia Kazemier 5
Challenging The 2015 PH Guidelines - comments from the Nurses. Wendy Gin-Sing RN MSc Pulmonary Hypertension CNS Imperial College Healthcare NHS Trust
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