An observational study in Interstitial Lung Disease, Idiopathic Pulmonary Fibrosis and Connective Tissue Related ILD, sponsored by Kingston University. Completed at 2 sites in United Kingdom. Open to participants aged 18 Years and older, including healthy volunteers. Per ClinicalTrials.gov, last updated 2021-02-21.
Sponsored by Kingston University · Observational
Treating and caring for people with long term conditions accounts for a substantial proportion of health care resources. Self-management is advocated as a mechanism that can empower service users with long term conditions to choose healthier options and also transform the relationship between service user and caregivers from one in which the former is a passive recipient of care to one in which they are an active partner in decision-making.
Interstitial lung disease (ILD) is one such long term condition. Patients with ILD often express concern about the lack of information on possible rehabilitation programmes and other services that could potentially improve self-management of the disease. In addition, there is a general perception about a lack of co-ordination between health care professionals especially in relation to referral to services for comprehensive management of the disease. Therefore, the needs of patients with ILD and their carers, and possible gaps in service provision need to be explored further.
In this study, the investigators propose to explore the needs of ILD patients from all types of ILD and all stages of severity and to also involve carers and clinicians. The investigators will conduct three focus groups for patients and carers and six one-to-one interviews with clinicians to explore perceptions about service gaps and needs in two ILD centres in South and North London, UK.
This study will provide valuable information to develop the building blocks of a self-management resource and will enable the investigators to make it specific to the different types of ILD.
576 studies on the registry are indexed under Idiopathic Pulmonary Fibrosis; 123 are open to participants now.
This study's enrollment of 16 is below the median of 152 across 165 observational studies indexed under Idiopathic Pulmonary Fibrosis.
Browse Idiopathic Pulmonary Fibrosis studies →Kingston University is the lead sponsor of 8 studies on the registry; none are open to participants now.
Compared within Idiopathic Pulmonary Fibrosis, this study's primary condition as ClinicalTrials.gg classifies it; the registry's first condition term is Lung Diseases, Interstitial. The counts are of registry records indexed under each term, refreshed daily. How we classify →
Patients with Interstitial Lung disease (ILD), their carers and healthcare professionals involved in their care in two hospitals in South and North London, UK.
PATIENTS
Inclusion Criteria:
Exclusion Criteria:
CAREGIVERS
Inclusion Criteria:
Exclusion Criteria:
CLINICIANS:
Inclusion Criteria:
Exclusion Criteria:
Patients from all types of ILD who are under the care of the two collaborating hospitals.
Behavioral: Focus groups
Family and carers of patients with ILD who are or have been treated in the two collaborating hospitals.
Behavioral: Focus groups
Clinicians from the two collaborating hospitals and GPs from the nearby areas who treat and refer patients with ILD.
Behavioral: Semi-structured interviews
Focus group discussion led by the PI and facilitated by another researcher.
1:1 semi-structured interviews led by the PI
Perceptions of service needs and gaps in current services among ILD patients, carers and clinicians
Exploratory method, conducted using semi-structured 1:1 interviews and focus groups
Time frame: 1-2 hours
Differences in perceptions between participating ILD patients, carers and clinicians
Exploratory method, conducted using semi-structured interviews and focus groups
Time frame: 1-2 hours
Presentation and explanation of diagnosis and its implications to ILD patients and carers
Exploratory method using semi-structured interviews and focus groups
Time frame: 1-2 hours
Presentation and explanation of information about the management of the disease to ILD patients and carers
Exploratory method using semi-structured interviews and focus groups
Time frame: 1-2 hours
Recommended solutions for better self-management
Exploratory method using semi-structured interviews and focus groups
Time frame: 1-2 hours
Plan to share: No — A unique identification number will be allocated to each participant and data will not be shared without being anonymised
No publications or documents are linked to this record.
Ran from Jun 2018 to primary completion in Oct 2020, 28 months.
Of 74 non-industry observational studies under Idiopathic Pulmonary Fibrosis, half reached primary completion within 63 months of starting (the median), counting those still running; a quarter within 29 and three quarters within 110. This study's 28 months is below that.
Counting every sponsor, half of 88 studies reached it within 54 months; a quarter within 29 and three quarters within 98.
How these figures are worked out, and which studies are left out of them.
This study is completed, as verified in Feb 2021. You cannot join it, but the record below documents what was studied.
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Idiopathic Pulmonary Fibrosis →
Kingston University