Toward Self-management in ILD

Idiopathic Pulmonary Fibrosis Clinical Trial

Official title:

Toward a Model of Self-management; Identifying Gaps and Needs in Services for Patients With Interstitial Lung Disease

Clinical Trial Details — Status: Completed

Administrative data

• NCT number: NCT03300583
• Other study ID #: 16.0151
• Status: Completed
• Start date: June 1, 2018
• Est. completion date: December 30, 2020

Study information

• Verified date: February 2021
• Source: Kingston University
• Contact: n/a
• Is FDA regulated: No
• Study type: Observational

Clinical Trial 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.

Recruitment information / eligibility

• Status: Completed
• Enrollment: 16
• Est. completion date: December 30, 2020
• Est. primary completion date: October 30, 2020
• Accepts healthy volunteers: Accepts Healthy Volunteers
• Gender: All
• Age group: 18 Years and older

Eligibility

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

Related Conditions & MeSH terms

• Alveolitis, Extrinsic Allergic
• Chronic Hypersensitivity Pneumonitis
• Connective Tissue Related ILD
• Fibrotic Lung Disease
• Hypersensitivity
• Idiopathic Pulmonary Fibrosis
• Interstitial Lung Disease
• Lung Diseases
• Lung Diseases, Interstitial
• Pneumonia
• Pulmonary Fibrosis

Intervention

Behavioral:
• Focus groups
Focus group discussion led by the PI and facilitated by another researcher.
• Semi-structured interviews
1:1 semi-structured interviews led by the PI

Locations

Country	Name	City	State
United Kingdom	St George's Hospital London	London
United Kingdom	University College Hospital	London

Sponsors (3)

Lead Sponsor	Collaborator
Kingston University	St. George's Hospital, London, University College London Hospitals

Country where clinical trial is conducted

United Kingdom, 

Outcome

Type	Measure	Description	Time frame	Safety issue
Primary	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	1-2 hours
Secondary	Differences in perceptions between participating ILD patients, carers and clinicians	Exploratory method, conducted using semi-structured interviews and focus groups	1-2 hours
Secondary	Presentation and explanation of diagnosis and its implications to ILD patients and carers	Exploratory method using semi-structured interviews and focus groups	1-2 hours
Secondary	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	1-2 hours
Secondary	Recommended solutions for better self-management	Exploratory method using semi-structured interviews and focus groups	1-2 hours