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Young people’s experience of transition from paediatric to adult haemophilia care in the UK

Luke Pembroke
Luke Pembroke
 et 
Sandra Dodgson
Sandra Dodgson
   | 14 déc. 2018
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Article Category: Clinical Practice
Publié en ligne: 14 déc. 2018
Pages: 122 - 129
DOI: https://doi.org/10.17225/jhp00127
Mots clés
© 2018 Luke Pembroke, Sandra Dodgson, published by Sciendo
This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

Image: Poor planning can leave young people transitioning from paediatric to adult care feeling lost and unsupported. Those interviewed for the Transforming Transition project identified communication as being key to feeling informed and prepared for changes in their care© Shutterstock
Image: Poor planning can leave young people transitioning from paediatric to adult care feeling lost and unsupported. Those interviewed for the Transforming Transition project identified communication as being key to feeling informed and prepared for changes in their care© Shutterstock

Image: Interviews with young women with von Willebrand’s disease revealed that the transition process was often lacking and highlighted the importance of access to clinicians who are comfortable and confident in discussing women’s issues© Shutterstock
Image: Interviews with young women with von Willebrand’s disease revealed that the transition process was often lacking and highlighted the importance of access to clinicians who are comfortable and confident in discussing women’s issues© Shutterstock

Image: With the right planning, transition can be a positive experience. A personalised approach, early exposure to the adult care team, good communication, and supporting parents and carers are important factors© Shutterstock
Image: With the right planning, transition can be a positive experience. A personalised approach, early exposure to the adult care team, good communication, and supporting parents and carers are important factors© Shutterstock

Transition experiences of parents of young people with bleeding disorders

PARTICIPAIS TAGE OF CHILD (YEARS)CHILD'S DIAGNOSISAGE AT TRANSFER TO ADULT SERVICE (YEARS)WAS TRANSITION "PLANNED"?WAS TRANSITION "SUPPORTED"?AGE AT START OF SELF-INFUSING (YEARS)MOTIVATIONCONFIDENCE IN SELF- MANAGEMENTADHERENCE (SELF-REPORTED)
Pal24Severe B16YesYes<10N/AYesGood
Pa219Severe A18NoNo16/17-ModeratePoor - reliance on parents
Pa314/17Severe A16NoNo
Pa421Mild A16YesNoN/APoorDoctor-dependent
Pa519Severe A16YesYes8
Pa619Mild vWD17NoNoN/A-NonePoor - reliance on parents

Characteristics of people with bleeding disorders interviewed

PARTICIPANTAGE (YEARS)DIAGNOSIS OF SUBJECTAGE AT TRANSFER TO ADULT SERVICE (YEARS)WAS TRANSITION "PLANNED"?WAS TRANSITION "SUPPORTED"?TREATMENTAGE AT START OF SELF- INFUSINGMOTIVATIONCONFIDENCE IN SELF- MANAGEMENTADHERENCE (SELF-REPORTED)
P120Severe A15YesYesProphylaxis5"I didn't really like having other people doing my treatment"YesGood (but relies on regularity of dosing every other day)
P221Severe B18NoNoProphylaxis6School trip; seen alone at clinic since age 16YesMostly good
P318Severe A16/17NoNoProphylaxis9School tripYesMostly good
P417Severe A17NoNoProphylaxis11YesGood
P519Mild A18YesYesOn demand--PoorN/A
P621Mild A17/18YesYesOn demand-Seen alone at clinic since age 16YesN/A
P721Mild A16YesYesOn demand--On demandN/A
P819Severe A16YesYesProphylaxis8 (port)Seen alone at clinic since age 14YesGood
P921Mild vWD15NoNoTXA--YesOn demand
P1021vWD18NoNoOCP and TXAInfused by clinic nurse-PoorRelies on mother
P1120Severe vWD18YesYesTXA9, taught by her nurseEncouraged by nurseGoodOn demand
P1220Severe vWD 2A14NoNoTXA on demandInfused by clinic nurse-PoorRelies on mother
P1319Mild vWD17NoNoOCP and TXAN/A-ReasonableN/A
eISSN:
2055-3390
Langue:
Anglais
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Volume Open
Sujets de la revue:
Medicine, Basic Medical Science, other, Clinical Medicine, Pharmacy, Pharmacology
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