Toward Self-management in ILD

Completed

• Conditions: Chronic Hypersensitivity Pneumonitis; Interstitial Lung Disease; Connective Tissue Related ILD; Idiopathic Pulmonary Fibrosis; Fibrotic Lung Disease
• Interventions: Behavioral: Focus groups; Behavioral: Semi-structured interviews

• Registration Number: NCT03300583
• Lead Sponsor: Kingston University

Brief Summary

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

Not available

Study Timeline

• Study First Submitted: 2017-09-28
• Study First Submitted QC: 2017-09-28
• Study First Posted: 2017-10-03
• Study Start: 2018-06-01
• Primary Completion: 2020-10-30
• Study Completion: 2020-12-30
• Status Verified: 2021-02
• Last Update Submitted: 2021-02-18
• Last Update Posted: 2021-02-21

Recruitment & Eligibility

• Status: COMPLETED
• Sex: All
• Target Recruitment: 16

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

Study & Design

• Study Type: OBSERVATIONAL
• Study Design: Not specified

Arm && Interventions

Group	Intervention	Description
Family/Carers	Focus groups	Family and carers of patients with ILD who are or have been treated in the two collaborating hospitals.
ILD patients	Focus groups	Patients from all types of ILD who are under the care of the two collaborating hospitals.
Clinicians	Semi-structured interviews	Clinicians from the two collaborating hospitals and GPs from the nearby areas who treat and refer patients with ILD.

Primary Outcome Measures

Name	Time	Method
Perceptions of service needs and gaps in current services among ILD patients, carers and clinicians	1-2 hours	Exploratory method, conducted using semi-structured 1:1 interviews and focus groups

Secondary Outcome Measures

Name	Time	Method
Recommended solutions for better self-management	1-2 hours	Exploratory method using semi-structured interviews and focus groups
Differences in perceptions between participating ILD patients, carers and clinicians	1-2 hours	Exploratory method, conducted using semi-structured interviews and focus groups
Presentation and explanation of diagnosis and its implications to ILD patients and carers	1-2 hours	Exploratory method using semi-structured interviews and focus groups
Presentation and explanation of information about the management of the disease to ILD patients and carers	1-2 hours	Exploratory method using semi-structured interviews and focus groups

Trial Locations

Locations (2)

St George's Hospital London; 🇬🇧 London, United Kingdom

University College Hospital; 🇬🇧 London, United Kingdom