Toward Self-management in ILD

NCT03300583 | Completed

• 1 other identifier: 16.0151
• Study Type: observational
• Target: 16
• Locations: 1 country
• Sites: 2

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.

Conditions

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

Keywords

Interstitial lung disease; Self-Management; Service provision

Outcome Measures

Primary Outcomes (1)

• 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 Outcomes (4)

• Differences in perceptions between participating ILD patients, carers and clinicians

  1-2 hours

• Presentation and explanation of diagnosis and its implications to ILD patients and carers

  1-2 hours

• Presentation and explanation of information about the management of the disease to ILD patients and carers

  1-2 hours

• Recommended solutions for better self-management

  1-2 hours

Study Arms (3)

ILD patients

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

Behavioral: Focus groups

Family/Carers

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

Behavioral: Focus groups

Clinicians

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

Behavioral: Semi-structured interviews

Interventions

Focus groups BEHAVIORAL

Focus group discussion led by the PI and facilitated by another researcher.

Family/Carers; ILD patients

Semi-structured interviews BEHAVIORAL

1:1 semi-structured interviews led by the PI

Clinicians

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: Yes
• Age Groups: Adult (18-64), Older Adult (65+)
• 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.

You may qualify if:

• Diagnosed with Interstitial Lung disease (all types apart from sarcoidosis)
• Age \>18 years
• At least one consultation with a health care professional

You may not qualify if:

• Diagnosed with sarcoidosis
• Unable to communicate in English
• Severity of condition and commodities preventing participation
• CAREGIVERS
• \- Currently caring for a participant with ILD
• \- Unable to communicate in English
• CLINICIANS:
• \- Involved in the clinical management and treatment of ILD patients
• \- Health care professionals not directly involved in management or treatment of ILD patients

Sponsors & Collaborators

• Kingston University: lead
• St. George's Hospital, London: collaborator
• University College London Hospitals: collaborator

Study Sites (2)

St George's Hospital London

London, SW17 ORE, United Kingdom

Location

University College Hospital

London, United Kingdom

Location

MeSH Terms

Conditions

Lung Diseases, Interstitial; Idiopathic Pulmonary Fibrosis

Interventions

Focus Groups

Condition Hierarchy (Ancestors)

Lung Diseases; Respiratory Tract Diseases; Pulmonary Fibrosis

Intervention Hierarchy (Ancestors)

Data Collection; Epidemiologic Methods; Investigative Techniques; Health Care Evaluation Mechanisms; Quality of Health Care; Health Care Quality, Access, and Evaluation; Public Health; Environment and Public Health

Study Officials

• Dimitra Nikoletou, PhD

  Kingston University and St George's University of London- Joint Faculty- Health, Social care and Education

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: observational
• Observational Model: COHORT
• Time Perspective: PROSPECTIVE
• Sponsor Type: OTHER
• Responsible Party: PRINCIPAL INVESTIGATOR
• PI Title: Associate Professor

Study Record Dates

• First Submitted: September 28, 2017
• First Posted: October 3, 2017
• Study Start: June 1, 2018
• Primary Completion: October 30, 2020
• Study Completion: December 30, 2020
• Last Updated: February 21, 2021

Record last verified: 2021-02

Data Sharing

• IPD Sharing: Will not share

Locations

GB (2)