Clinical trial NCT03300583: Toward Self-management in ILD
Official title: Toward a Model of Self-management; Identifying Gaps and Needs in Services for Patients With Interstitial Lung Disease
Study type: OBSERVATIONAL
Overall status: COMPLETED
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
Lead sponsor: Kingston University
Sponsor class: OTHER
Collaborators: name: St. George's Hospital, London
name: University College London Hospitals
First posted: 2017-10-03
Enrollment: 16
Sex: ALL
Minimum age (years): 18
Standard ages: ADULT
OLDER_ADULT
Accepts healthy volunteers: yes
Observational model: COHORT
Time perspective: PROSPECTIVE
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.

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.


Eligibility 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

Primary outcomes:
measure: Perceptions of service needs and gaps in current services among ILD patients, carers and clinicians
timeFrame: 1-2 hours
Secondary outcomes:
measure: Differences in perceptions between participating ILD patients, carers and clinicians
timeFrame: 1-2 hours
measure: Presentation and explanation of diagnosis and its implications to ILD patients and carers
timeFrame: 1-2 hours
measure: Presentation and explanation of information about the management of the disease to ILD patients and carers
timeFrame: 1-2 hours
measure: Recommended solutions for better self-management
timeFrame: 1-2 hours
Other outcomes:
Locations:
city: London
country: United Kingdom
facility: St George's Hospital London
city: London
country: United Kingdom
facility: University College Hospital
Study officials:
affiliation: Kingston University and St George's University of London- Joint Faculty- Health, Social care and Education
name: Dimitra Nikoletou, PhD
role: PRINCIPAL_INVESTIGATOR
References: