Exploring the Lived Experience of Young Adults With Severe Asthma

Trial statusRecruiting
Trial phaseNot listed
Trial typeObservational
Biological sexAll
Age16-25
SponsorManchester University NHS Foundation Trust

About this trial

Asthma is a serious long-term lung condition caused by swollen airways that narrow. This causes wheezing, chest tightness, and breathlessness. Most asthma is well-controlled with medication.

However, 5-10% of asthmatics have severe asthma where treatment does not control symptoms and up to 67% of asthmatics have uncontrolled asthma, caused by not always taking medication as recommended, lifestyle choices or other health problems worsening their asthma.

In the UK, asthma affects around 800,000 young adults. This group is at high-risk of having poor asthma control, worse outcomes than other age-groups. This is because young adults need care that differs from other age-groups and current care is not meeting these needs.

There is little information on the experiences and needs of this group and very few studies exist, exploring how to improve care. This study will explore the experiences and needs of young adults (age16-25) with severe and uncontrolled asthma.

Methods. The investigators will perform two study-arms with young adults with severe/uncontrolled asthma in Manchester and Liverpool severe asthma centres:

Study-arm 1: Interview participants using photographs chosen by them to help explain their experiences of living with asthma and support that they need.

Study arm 2: Perform group interviews to understand participants' thoughts around the insights from study-arm 1 combined with their own experiences. To explore and develop ideas on how to improve future care.

At the end of both study arms, a workshop involving patients and stakeholders involved in delivering care will take place, to identify a joint goal of how to improve care in this cohort and map ways in which to achieve this.

Together, the study results and workshop will increase our understanding of the experiences and needs of young adults with asthma. Helping us to identify new ways to improve care which can be tested in future research.

Eligibility criteria

This trial does not accept healthy volunteers

Qualifiers

A confirmed diagnosis of severe or uncontrolled asthma under the care of the Manchester or Liverpool severe asthma services

Participants aged 16-25 years.

Informed consent provided.

Disqualifiers

Inability to provide informed consent.

Participants with additional long-term conditions who identify their dominant health concern to be non-asthma related.

Focus group only- inability to converse in English

Trial population

young adults age 16-25 with severe or uncontrolled asthma

Trial design

Design model

Other

Time perspective

Prospective

Treatments tested in this trial

  • one to one interviews and or focus groups

    Other intervention

    one to one interviews and or focus groups

Treatment groups

46 Participants
are divided into 1 treatment group
Group A: young adults with severe and or uncontrolled asthma1 intervention

Trial outcomes

Primary outcomes

1

Patient perceived experiences and challenges of living with severe and or uncontrolled asthma

The investigators are not directly using tools/scales to measure outcome measures but will be using the data generated from the in depth interviews and focus groups to understand subjective participant perceived experiences and challenges of living with severe/uncontrolled asthma. in seeking to understand this, the investigators will meet the intended primary outcomes of the study.

Time frame
12 months

Secondary outcomes

Other outcomes

1

patient perceived support needs

The investigators will not be using scales or tools to measure outcomes, but will be using the in-depth interviews and focus groups to understand participants subjective perceived support needs, in seeking to understand this, the investigators will meet the intended outcomes of the study.

Time frame
12 months

Sponsors and contacts

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Manchester University NHS Foundation Trust

Lead sponsor

Burdett Trust for Nursing

Collaborator

Liverpool University Hospitals NHS Foundation Trust

Collaborator

University of Manchester

Collaborator