Patients with cleft: Experiences, understanding and information provision during treatment

Area of Science:

• Craniofacial anomalies
• Patient education
• Healthcare communication

Background:

• Cleft lip and/or palate (CL/P) affects individuals throughout their lives, necessitating ongoing management.
• Understanding of CL/P and its treatment varies significantly among affected individuals.
• The cleft care pathway involves complex treatments, including orthodontic and orthognathic interventions.

Purpose of the Study:

• To explore the knowledge and experiences of late adolescents and adults with CL/P regarding their condition.
• To investigate patient understanding of treatment options and outcomes within the cleft care pathway.
• To identify gaps in information provision for individuals with CL/P.

Main Methods:

• Qualitative study employing semi-structured interviews with 28 participants undergoing or completing definitive orthodontic/orthognathic treatment.
• Participants were recruited from two UK cleft centres.
• Thematic analysis using the framework method was conducted on transcribed interviews.

Main Results:

• Participants exhibited diverse interpretations of CL/P causes and implications, leading to confusion and vulnerability to misinformation.
• Confusion existed regarding the implications of various treatment options.
• Patients reported insufficient information about treatment nature, duration, and post-treatment recovery, causing concern.

Conclusions:

• A significant mismatch exists between information provided and patient knowledge regarding CL/P and available treatments.
• Clear, accessible information must be provided at appropriate stages of the cleft care pathway.
• Enhanced information delivery is essential for empowering patients to make informed treatment decisions.