Toward Self-management in ILD

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

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.

Study Overview

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

• Study Type: Observational
• Enrollment (Actual): 16

Contacts and Locations

Study Locations

• United Kingdom
  • London, United Kingdom
    • University College Hospital
  • London, United Kingdom, SW17 ORE
    • St George's Hospital London

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: 18 years and older (Adult, Older Adult)
• Accepts Healthy Volunteers: Yes
• Genders Eligible for Study: All

• Sampling Method: Non-Probability Sample

Study Population

Patients with Interstitial Lung disease (ILD), their carers and healthcare professionals involved in their care in two hospitals in South and North London, UK.

Description

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

Study Plan

How is the study designed?

Number of groups / cohorts

3

Cohorts and Interventions

Group / Cohort	Intervention / Treatment
ILD patients; Patients from all types of ILD who are under the care of the two collaborating hospitals.	Behavioral: Focus groups; 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.	Behavioral: Focus groups; 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.	Behavioral: Semi-structured interviews; 1:1 semi-structured interviews led by the PI

What is the study measuring?

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

Collaborators and Investigators

• Sponsor: Kingston University
• Collaborators: University College London Hospitals; St. George's Hospital, London
• Investigators: Principal Investigator: Dimitra Nikoletou, PhD, Kingston University and St George's University of London- Joint Faculty- Health, Social care and Education

Study record dates

Study Major Dates

• Study Start (Actual): June 1, 2018
• Primary Completion (Actual): October 30, 2020
• Study Completion (Actual): December 30, 2020

Study Registration Dates

• First Submitted: September 28, 2017
• First Submitted That Met QC Criteria: September 28, 2017
• First Posted (Actual): October 3, 2017

Study Record Updates

• Last Update Posted (Actual): February 21, 2021
• Last Update Submitted That Met QC Criteria: February 18, 2021
• Last Verified: February 1, 2021

More Information

Terms related to this study

• Keywords: Self-Management; Interstitial lung disease; Service provision
• Additional Relevant MeSH Terms: Infections; Respiratory Tract Infections; Respiratory Tract Diseases; Immune System Diseases; Hypersensitivity, Immediate; Respiratory Hypersensitivity; Hypersensitivity; Lung Diseases; Pneumonia; Pulmonary Fibrosis; Idiopathic Pulmonary Fibrosis; Lung Diseases, Interstitial; Alveolitis, Extrinsic Allergic
• Other Study ID Numbers: 16.0151

Plan for Individual participant data (IPD)

• Plan to Share Individual Participant Data (IPD)?: NO
• IPD Plan Description: A unique identification number will be allocated to each participant and data will not be shared without being anonymised

Drug and device information, study documents

• Studies a U.S. FDA-regulated drug product: No
• Studies a U.S. FDA-regulated device product: No