Parent-reported quality of life measures for young children with primary ciliary dyskinesia

Parent-reported Quality of Life measures for young children with Primary Ciliary Dyskinesia (QOL-PCD)

Status

Active, not recruiting

Phases

Unknown

Study type

Observational

Source

ISRCTN

Registry ID

ISRCTN87361437

Enrollment

Registered

2022-09-06

Start date

2019-11-01

Completion date

Unknown

Last updated

2025-02-03

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Primary ciliary dyskinesia Genetic Diseases Primary ciliary dyskinesia

Interventions

To inform the development of the patient-reported outcome measure (QOL-PCDPR), individual, semi-structured open-ended interviews will be conducted by telephone with parents by the research fellows who

we will discuss the specific quotes and saturation grids from the interviews. Selected items will be written using parent language as used in the qualitative interviews

the questions will then be combined into subscales based on the research team's conceptual framework. Participants will also be asked to complete questionnaires assessing quality of life to support t

Eligibility

Sex/Gender

All

Inclusion criteria

Inclusion criteria: Parents or guardians of young children (aged 0-6 years) who have received a diagnosis of primary ciliary dyskinesia

Exclusion criteria

Exclusion criteria: Does not meet inclusion criteria

Design outcomes

Primary

Measure	Time frame
1. Parental burden assessed using a single semi-structured interview by telephone 2. Parent's assessment of the child's quality of life at a single time point: 2.1. The Infant Toddler Quality of Life Questionnaire (47 item short form) 2.2. The Parent Cough-Specific Quality of Life (8 item short form) 2.3. Sinunasal Questionnaire (SN-5) 2.4. Otitis media-6 questionnaire 2.5. The prototype QOL-PCDPR questionnaire (for validation)	—

Measure

Time frame

1. Parental burden assessed using a single semi-structured interview by telephone 2. Parent's assessment of the child's quality of life at a single time point: 2.1. The Infant Toddler Quality of Life Questionnaire (47 item short form) 2.2. The Parent Cough-Specific Quality of Life (8 item short form) 2.3. Sinunasal Questionnaire (SN-5) 2.4. Otitis media-6 questionnaire 2.5. The prototype QOL-PCDPR questionnaire (for validation)

—

Secondary

Measure	Time frame
There are no secondary outcome measures.	—

Countries

Australia, Canada, England, United Kingdom, United States of America

Contacts

Public ContactJane;Laura Lucas;Behan

;

jlucas1@soton.ac.uk;l.behan@soton.ac.uk+44 (0)23 8120 6160;+353 87 9585887

Outcome results

None listed

Source: ISRCTN (via WHO ICTRP) · Data processed: Feb 4, 2026