Toward Self-management in ILD

Kingston University

Status: Completed

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

Treatments: Behavioral: Focus groups; Behavioral: Semi-structured interviews

Study type: Observational

Funder types: Other

Identifiers

NCT03300583

16.0151

Details and patient eligibility

About

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.

Enrollment: 16 patients

Sex: All

Ages: 18+ years old

Volunteers: Accepts Healthy Volunteers

Inclusion and 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 design

16 participants in 3 patient groups

ILD patients

Description:

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

Treatment:

Behavioral: Focus groups

Family/Carers

Description:

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

Treatment:

Behavioral: Focus groups

Clinicians

Description:

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

Treatment:

Behavioral: Semi-structured interviews