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Toward Self-management in ILD

Study Purpose

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.

Recruitment Criteria

Accepts Healthy Volunteers Healthy volunteers are participants who do not have a disease or condition, or related conditions or symptoms	Yes
Study Type An interventional clinical study is where participants are assigned to receive one or more interventions (or no intervention) so that researchers can evaluate the effects of the interventions on biomedical or health-related outcomes. An observational clinical study is where participants identified as belonging to study groups are assessed for biomedical or health outcomes. Searching Both is inclusive of interventional and observational studies.	Observational
Eligible Ages	18 Years and Over
Gender	All

More Inclusion & Exclusion Criteria

PATIENTS.

Inclusion Criteria:

- Diagnosed with Interstitial Lung disease (all types apart from sarcoidosis) - Age >18 years.

- At least one consultation with a health care professional.

Exclusion Criteria:

- Diagnosed with sarcoidosis.

- Unable to communicate in English.

- Severity of condition and commodities preventing participation.

CAREGIVERS.

Inclusion Criteria:

- Currently caring for a participant with ILD.

Exclusion Criteria:

- Unable to communicate in English.

CLINICIANS:

Inclusion Criteria:

- Involved in the clinical management and treatment of ILD patients.

Exclusion Criteria:

- Health care professionals not directly involved in management or treatment of ILD patients

Trial Details

Trial ID: This trial id was obtained from ClinicalTrials.gov, a service of the U.S. National Institutes of Health, providing information on publicly and privately supported clinical studies of human participants with locations in all 50 States and in 196 countries.	NCT03300583
Phase Phase 1: Studies that emphasize safety and how the drug is metabolized and excreted in humans. Phase 2: Studies that gather preliminary data on effectiveness (whether the drug works in people who have a certain disease or condition) and additional safety data. Phase 3: Studies that gather more information about safety and effectiveness by studying different populations and different dosages and by using the drug in combination with other drugs. Phase 4: Studies occurring after FDA has approved a drug for marketing, efficacy, or optimal use.
Lead Sponsor The sponsor is the organization or person who oversees the clinical study and is responsible for analyzing the study data.	Kingston University
Principal Investigator The person who is responsible for the scientific and technical direction of the entire clinical study.	Dimitra Nikoletou, PhD
Principal Investigator Affiliation	Kingston University and St George's University of London- Joint Faculty- Health, Social care and Education
Agency Class Category of organization(s) involved as sponsor (and collaborator) supporting the trial.	Other
Overall Status	Recruiting
Countries	United Kingdom
Conditions The disease, disorder, syndrome, illness, or injury that is being studied.	Interstitial Lung Disease, Idiopathic Pulmonary Fibrosis, Connective Tissue Related ILD, Chronic Hypersensitivity Pneumonitis, Fibrotic Lung Disease

Arms & Interventions

Arms

: ILD patients

Patients from all types of ILD who are under the care of the two collaborating hospitals.

: Family/Carers

Family and carers of patients with ILD who are or have been treated in the two collaborating hospitals.

: Clinicians

Clinicians from the two collaborating hospitals and GPs from the nearby areas who treat and refer patients with ILD.

Interventions

Behavioral: - Focus groups

Focus group discussion led by the PI and facilitated by another researcher.

Behavioral: - Semi-structured interviews

1:1 semi-structured interviews led by the PI

Contact a Trial Team

If you are interested in learning more about this trial, find the trial site nearest to your location and contact the site coordinator via email or phone. We also strongly recommend that you consult with your healthcare provider about the trials that may interest you and refer to our terms of service below.