Bijlage 4 Uitkomsten workshop optimaal transitieprogramma

De Workshop optimaal transitieprogramma heeft de Werkgroep Inhoud geholpen bij het definiëren en aanscherpen van de begrippen en definities. Op basis daarvan zijn de aanbevelingen ge(her)formuleerd. ‘No consensus’ betekent in dit geval dat de discussie over de precieze betekenis en invulling van het aspect nog niet duidelijk was. Deze workshop gaf een handvat om die discussie verder te voeren. Bij onderstaande punten is verder nog geen rekening gehouden met haalbaarheid en uitvoerbaarheid, die aspecten komen terug in de definitieve aanbevelingen en worden daarnaast verder uitgewerkt door werkgroep O&T.

 

Essential/ indispensable

Not essential, but nice to have

Consensus

  • involve young people in transition planning
  • involve parents / carers in transition planning
  • transition checklists for young people (& parents) (Ready Steady Go) to encourage self-management and independence
  • independent/ split-visit consultations: seeing young people alone for part of the consultation before inviting the parents
  • transition protocol/ transition pathway
  • transition clinic (meeting adult care in advance – joint clinic)
  • information about services and support available in adult care: information leaflet / website/ app
  • multidisciplinary team meetings about transition/ transfe
  • peer support (buddies)
  • involve primary care GP
  • survey of transition experiences after transfer
  • regular Health-related Quality of Life assessments (PROMs)[1]

 

No consensus

  • transfer letter (including summary of medical & social history of young person) → GP/adult care
  • written joint policy of PC and AC
  • a written transition plan to be handed out to young person/ family
  • online communities for young people
  • e-consultation or other forms of e-health

 

Consensus

  • self-management training (on-line/ face-to-face)
  • contribution of young person to transfer letter “what you need to know about me”
  • consultations with psychologist
  • group consultations with peers
  • welcome meeting and tour in adult care
  • mirror meetings with young people about experiences with transition & care
  • transition checklists for parents (Ready Steady Go) to encourage self-management and independence
  • parent support course
  • young person support course
  • adolescent clinic

 

No consensus

  • information sessions with young people and parents before transfer
  • patient advisory board
  • transition coordinator (named key worker)
  • early start (12-13 years)
  • conversational tool to encourage patient participation during consultations
  • camps, weekend & recreational peer activities
  • farewell meeting pediatric care

 

Not necessary

  • transition readiness assessment
  • test of knowledge of disease and treatment

 

VERGELIJKING MET INTERNATIONALE CONSENSUS: bij markering is de indeling van de Werkgroep Inhoud anders ten opzicht van de internationale consensus

 

F1

 

Essential & Nice-to-have interventions for transitional care

Interventions to improve organization of transitional care

  • transfer letter
  • transition protocol/ transition pathway
  • transition coordinator
  • transition clinic
  • a written transition plan to be handed out to young person/ family
  • welcome meeting and tour in adult care
  • information about services and support available in adult care: information leaflet / website/ app
  • information sessions with young people and parents before transfer
  • e-consultation or other forms of e-health

Interventions to empower young people & team

  • involve young people in transition planning
  • early start (12-13 years)
  • multidisciplinary team meetings about transition/ transfer
  • peer support
  • group meetings with peers
  • written joint policy of PC and AC
  • mirror meetings with young people
  • contribution of young person to transfer letter “what you need to know about me”

Interventions to enhance self-management and independence

  • transition checklists for young people & parents (Ready Steady Go)
  • independent/ split-visit consultations
  • involve parents / carers in transition planning
  • transition readiness assessment (no consensus; majority)
  • regular HRQoL assessments (PROMs)
  • self-management training (on-line/ face-to-face)

[1] Alleen als deze ook in het consult worden besproken