What is it?
The ConQol is a disease specific quality of life measure for children with congenital heart conditions.
- for clinical use, to screen the children who come through your care to check that they are not experiencing problems in a particular area of their life. Used in this way it can form the basis for discussion with the child and a way of 'opening up' areas of difficulty
- for audit or research. For example to compare different treatment methods in a randomised trial or to check that the result from your interventions are meeting the needs of your patients.
It produces three measures
- a descriptive profile of the frequency symptoms experienced by the child in the past week
- a weighted symptom index score summarising how difficult these symptoms had made respondents' lives
- a quality of life index score based on questions about activities, relationships, coping and control.
Symptoms are scored separately from the other items because children may experience a lot of symptoms but still perceive their quality of life as good.
How was it validated?
In a multicentre study involving 730 children from 5 paediatric cardiology centres in the UK. It was shown to have good validity and reliability, to be well regarded by children and to be easy to use. The study produced norms for age and sex by complexity of the underlying problem so you can see if the child has an unusual level of problems (these tables can be found in the main manual ). Download Manual Here (219K PDF)
Different age groups
During the interviewing it became clear that at around 12 years of age the factors that impact on a child's HRQOL change, so there are two versions.
The 8-11-year version consists of 29 items that cover three dimensions:
- symptoms (13 items)
- activities (8 items)
- relationships (10 items)
Download ConQol 8-11 here (73K PDF)
The 12-16-year version consists of 35 items covering four dimensions:
- symptoms (13 items)
- activities (9 items)
- relationships (10 items)
- control and coping (5 items).
In addition both versions contain one item that requires the child to indicate how they have felt in the past week compared to how they feel most of the time. This is a simple check to ensure that they've not reported an atypical week.
Download ConQol 12-16 here (72K PDF)
A brief guide to using the questionnaire is available from here (53K PDF)
How to score the questionnaire
The scores for each item are weighted, that is they have different values and cannot be simply added up. The weighting for each item was arrived at by asking the children how important they felt each item was in determining their quality of life. We also gathered weightings from clinicians and from parents. The manual gives full details of the weighting systems. To make the scoring process as easy as possible, a Microsoft Excel© spreadsheet has been designed that will automatically carry out all of the calculations. Download the Scoring spreadsheet from here (10.5MB XLS) instructions for using the scoring programme are available in the Brief Users Guide downloaded from here (53K PDF). NB: The final item in both scales does not contribute to the QOL score.
What does it cost?
The measure was developed by the BHF Care and Education Research Group at the University of York with funding from the BHF Research Committee and there is no charge for using the questionnaires or the spreadsheet.
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