Toward Self-management in ILD

NCT ID: NCT03300583

Last Updated: 2021-02-21

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

COMPLETED

Total Enrollment

16 participants

Study Classification

OBSERVATIONAL

Study Start Date

2018-06-01

Study Completion Date

2020-12-30

Brief Summary

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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.

Detailed Description

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Conditions

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Interstitial Lung Disease Idiopathic Pulmonary Fibrosis Connective Tissue Related ILD Chronic Hypersensitivity Pneumonitis Fibrotic Lung Disease

Study Design

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Observational Model Type

COHORT

Study Time Perspective

PROSPECTIVE

Study Groups

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ILD patients

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

Focus groups

Intervention Type BEHAVIORAL

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

Family/Carers

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

Focus groups

Intervention Type BEHAVIORAL

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

Clinicians

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

Semi-structured interviews

Intervention Type BEHAVIORAL

1:1 semi-structured interviews led by the PI

Interventions

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Focus groups

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

Intervention Type BEHAVIORAL

Semi-structured interviews

1:1 semi-structured interviews led by the PI

Intervention Type BEHAVIORAL

Eligibility Criteria

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Inclusion Criteria

* Diagnosed with Interstitial Lung disease (all types apart from sarcoidosis)
* Age \>18 years
* At least one consultation with a health care professional


\- Currently caring for a participant with ILD


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

Exclusion Criteria

* Diagnosed with sarcoidosis
* Unable to communicate in English
* Severity of condition and commodities preventing participation

CAREGIVERS


\- Unable to communicate in English

CLINICIANS:


\- Health care professionals not directly involved in management or treatment of ILD patients
Minimum Eligible Age

18 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

Yes

Sponsors

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St. George's Hospital, London

OTHER

Sponsor Role collaborator

University College London Hospitals

OTHER

Sponsor Role collaborator

Kingston University

OTHER

Sponsor Role lead

Responsible Party

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Dimitra Nikoletou

Associate Professor

Responsibility Role PRINCIPAL_INVESTIGATOR

Principal Investigators

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Dimitra Nikoletou, PhD

Role: PRINCIPAL_INVESTIGATOR

Kingston University and St George's University of London- Joint Faculty- Health, Social care and Education

Locations

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St George's Hospital London

London, , United Kingdom

Site Status

University College Hospital

London, , United Kingdom

Site Status

Countries

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United Kingdom

Other Identifiers

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16.0151

Identifier Type: -

Identifier Source: org_study_id

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