End of pathway cleft surgery: Exploring the patient-reported outcomes and young people’s decision making experiences.

Acum, Michelle (2018) End of pathway cleft surgery: Exploring the patient-reported outcomes and young people’s decision making experiences. Doctoral thesis, University of East Anglia.

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Objective: Literature exploring how young people (YP) experience cleft surgery at
the end of the treatment pathway is limited, both in terms of their reported outcomes
and their experience of deciding whether to undergo surgery. This thesis aimed to
add to the cleft field by reviewing the patient-reported outcomes (PROs) of end of
pathway cleft surgery and exploring YP’s experiences of deciding whether to
undergo orthognathic surgery (OS; an end of pathway cleft surgery).
Design: A systematic literature search identified studies measuring the PROs of
undergoing end of pathway cleft surgery. To explore OS decision making
experiences a qualitative design was employed and interviews conducted with
twelve YP.
Results: The 22 studies measuring PROs varied in methodological quality; most
were small scale and none utilised a measure validated in the cleft population,
meaning it is hard to draw conclusions about end of pathway cleft surgery from the
patient perspective. Thematic Analysis of YP’s accounts resulted in the development
of four themes to depict YP’s decision making experiences: 1) Awareness of
difference, 2) Committing to the process, 3) Others facilitating decision making and
4) Responsibility on my shoulders.
Conclusions: This thesis reveals the difficulty in determining PROs of end of
pathway cleft surgery due to the methodological challenges and the heterogeneity of
what, how and when outcomes are measured. It demonstrates the contextual, social
and personal complexities YP experienced in the process of deciding about OS
during a period of developmental transition. Theoretical, clinical and research
implications are discussed.
Key words: cleft, surgery, patient-reported outcomes, decision making,
young person, orthognathic

Item Type: Thesis (Doctoral)
Faculty \ School: Faculty of Medicine and Health Sciences > Norwich Medical School
Depositing User: Jackie Webb
Date Deposited: 15 Nov 2018 12:09
Last Modified: 15 Nov 2018 12:09
URI: https://ueaeprints.uea.ac.uk/id/eprint/68908


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