Core Outcome Measures in Effectiveness Trials

Prioritising Outcomes iN Childhood Hearing lOss (The PONCHO study)

General Information

Summary:
Research studies examining hearing loss in children and young people look at many different things making it difficult to put the information together and find a clear answer. We are planning to develop a list of things that hearing loss studies should measure. We will recommend that all hearing loss research measures things from our list as a minimum. That list is called Core Outcome Set or COS. Using COS will enable doctors and patients to compare results from different studies and make up their mind about research much easier.
We will look for children and young people who have permanent hearing loss which is mild, moderate or severe and has not been managed surgically (i.e. patients do not have a cochlear implant). We will speak with our participants and health professionals that take care of them about what is important for this group of people. We plan to ask
children and young people as well as their parents about their experience of day to day living with hearing loss. The literature gives an understanding of the challenges faced by parents receiving news of their child having a hearing loss and difficulties accessing services but much less is known about the 'lived experience’ of hearing loss of parents,
children and young people. Interviews or focus groups will be used to identify topics important for patients, their parents, and professionals who take care of them. Then, we will ask patients, carers and healthcare professionals from the hearing loss field to vote on those topics to come up with the ones that are the most important for all 3 groups. At the end of the voting process we will have a Core Outcome Set for children and young people with mild to severe hearing loss.

Contributors:
Prof Iain Bruce, Dr Rebecca Morris, Dr Lucy O'Malley, Dr Yin-Ling Lin, Dr Martin O’Driscoll, Dr Rachel Booth, Dr Amanda Hall, Prof Jane Blazeby, Dr Kerry Avery, Dr Daisy Elliott

Further Study Information

Current Stage:
Ongoing
Date:
October 2017 - March 2020
Funding source(s):
Biomedical Research Center Manchester, Hearing Health Theme

Health Area

Disease Category
Child health
Ear, nose, & throat

Disease Name
Hearing loss

Target Population

Age Range
0 - 18

Sex
Either


Nature / type of Intervention
N/A

Method(s)

Delphi process
Focus group(s)
Interview
Literature review

The overall aim of the project is to identify Core Outcome Sets (COS) for childhood hearing loss. First stage of this work involves the generation of a ‘long list’ of possible outcome measures through interviews with children and young people and parents/ carers and through focus groups with health care professionals (qualitative research). The nature of the COS developed will be influenced by the findings of the qualitative study with subgroups likely being determined either by life stage/age or severity of hearing loss.Following the creation of the 'long list' they will be prioritized via Delphi exercise and COS will be agreed during a consensus meeting.


Stakeholders Involved

Clinical experts
Consumers (caregivers)
Consumers (patients)

Study Type

COS for clinical trials or clinical research
COS for practice

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