Toward Self-management in ILD

Study Overview
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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.

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

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

Intervention / Treatment
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* Behavioral: Focus groups
* Behavioral: Semi-structured interviews


Participation Criteria
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Eligibility Criteria
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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

Ages Eligible for Study
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Minimum Age: 18 Years

Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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Accepts Healthy Volunteers

Study Plan
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How is the study designed?
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Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| ILD patients<br>Patients from all types of ILD who are under the care of the two collaborating hospitals. | Behavioral: Focus groups<br>* Focus group discussion led by the PI and facilitated by another researcher.<br>|
| Family/Carers<br>Family and carers of patients with ILD who are or have been treated in the two collaborating hospitals. | Behavioral: Focus groups<br>* Focus group discussion led by the PI and facilitated by another researcher.<br>|
| Clinicians<br>Clinicians from the two collaborating hospitals and GPs from the nearby areas who treat and refer patients with ILD. | Behavioral: Semi-structured interviews<br>* 1:1 semi-structured interviews led by the PI<br>|

What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| 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 Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Differences in perceptions between participating ILD patients, carers and clinicians | Exploratory method, conducted using semi-structured interviews and focus groups | 1-2 hours | 
| 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 | 
| 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 | 
| Recommended solutions for better self-management | Exploratory method using semi-structured interviews and focus groups | 1-2 hours | 

 Terms related to the study
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Keywords Provided by Centre Hospitalier Valida
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Interstitial lung disease, Self-Management, Service provision