Test-Retest Reliability, Responsiveness and Interpretability of CLEFT-Q

NCT ID: NCT05775679

Last Updated: 2023-03-20

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

RECRUITING

Total Enrollment

260 participants

Study Classification

OBSERVATIONAL

Study Start Date

2022-02-15

Study Completion Date

2028-12-31

Brief Summary

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The goal of this observational study is to test the questionnaire CLEFT-Q in a population of patients with cleft lip and/or palate. The main questions it aims to answer are:

1. Are CLEFT-Q scores reliable over time?
2. Can CLEFT-Q detect change following surgical treatment intervention?
3. What is the norm for CLEFT-Q within a control population who do not have cleft lip and/or palate?
4. What is the Minimal Clinically Important Change of CLEFT-Q in different subpopulations of cleft lip and/or palate?
5. Do changes in CLEFT-Q scores correlate with changes in objective outcomes following a surgical intervention?
6. What are the main expectations that patients express before a surgical intervention?
7. How do patients perceive that the results after surgical interventions meet their expectations?
8. Do patients express concepts of importance postoperatively that are not examined by CLEFT-Q?
9. How do healthcare professionals perceive that the use of CLEFT-Q affects clinical decisions and processes?

Participants will

1. Fill out the questionnaire CLEFT-Q twice with a two-week space.
2. Before and 1 year after an operation.
3. Be interviewed about their experiences related to an operation or using CLEFT-Q.

Researchers will compare results from the cleft lip and palate population to see if there is a difference between them and a population without cleft lip and palate.

Detailed Description

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Conditions

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Cleft Lip and Palate

Study Design

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Observational Model Type

COHORT

Study Time Perspective

PROSPECTIVE

Study Groups

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Test-retest reliability

50 patients answer CLEFT-Q twice with 1-2 weeks in between.

No interventions assigned to this group

Secondary Nose Surgery

50 patients answer CLEFT-Q before and 6 months after secondary nose surgery.

No interventions assigned to this group

Secondary Lip Surgery

50 patients answer CLEFT-Q before and 6 months after secondary lip surgery.

No interventions assigned to this group

Jaw Surgery

50 patients answer CLEFT-Q before and 1 year after jaw surgery.

No interventions assigned to this group

Secondary Speech Improving Surgery

50 patients answer CLEFT-Q before and 1 year after secondary speech improving surgery.

No interventions assigned to this group

Health care professionals

20 health care professionals will be interviewed about their experiences on working with CLEFT-Q.

No interventions assigned to this group

Eligibility Criteria

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Inclusion Criteria

* Cleft lip and/or palate
* Planned secondary surgery of the nose, lips, jaw or to improve speech
* Can speak and read Swedish

Exclusion Criteria

* Multiple surgeries at once
Minimum Eligible Age

8 Years

Maximum Eligible Age

29 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

Yes

Sponsors

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Karolinska University Hospital

OTHER

Sponsor Role collaborator

Linköping Univeristy Hospital

UNKNOWN

Sponsor Role collaborator

Umeå University Hospital

UNKNOWN

Sponsor Role collaborator

Uppsala University Hospital

OTHER

Sponsor Role collaborator

Department of Plastic and Reconstructive Surgery

NETWORK

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Principal Investigators

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Mia Stiernman, MD PhD

Role: PRINCIPAL_INVESTIGATOR

Mia Stiernman

Locations

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Skania University Hospital

Malmo, Skåne County, Sweden

Site Status RECRUITING

Countries

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Sweden

Central Contacts

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Mia Stiernman, MD PhD

Role: CONTACT

+46737032606

Facility Contacts

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Mia Stiernman, MD PhD

Role: primary

+46737032606

Other Identifiers

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2021-06993-01

Identifier Type: -

Identifier Source: org_study_id

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