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A mixed-methods study of the Care Needs of individuals with idiopathic Pulmonary fibrosis and their carers--CaNoPy: a study protocol

A mixed-methods study of the Care Needs of individuals with idiopathic Pulmonary fibrosis and their carers--CaNoPy: a study protocol
A mixed-methods study of the Care Needs of individuals with idiopathic Pulmonary fibrosis and their carers--CaNoPy: a study protocol

INTRODUCTION: Idiopathic pulmonary fibrosis (IPF) is a progressive, life-threatening illness of unknown aetiology, with no proven pharmacological treatments. There is a limited evidence base indicating that the disease negatively affects quality of life, leading to increased dependence, restrictions on daily activities and fatigue. However, there is a paucity of in-depth information on disease impact across its trajectory, particularly in relation to unmet needs, outcomes of importance to patients and the experiences of carers. Furthermore, little is known about the support and information needs of individuals and their carers, or at what point individual need should trigger a referral to palliative care services.

METHODS AND ANALYSIS: A mixed-methods study is proposed recruiting individuals with IPF at different stages of the disease and their carers from three respiratory centres in England and Wales. In-depth interviews will be undertaken with participants, adopting an Interpretative Phenomenological Analysis approach. The study will also use validated questionnaires to explore quality of life (EQ-5D), depression (Hospital Anxiety and Depression Scale), breathlessness (Borg dyspnoea scale) and cough (Leicester Cough Questionnaire, Cough Symptom Score).

ETHICS AND DISSEMINATION: Ethical approvals were gained in April 2012. Palliative care research is a developing field, but there has been limited focus on IPF. We anticipate that the results of the study will enable healthcare professionals to provide appropriate palliative care across the trajectory for individuals with the disease, and their carers, and we therefore aim to disseminate via relevant respiratory and palliative care journals and conferences. We will also support the lay representative involved in the project to disseminate the findings to patient groups.

Journal Article
Byrne, Anthony
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Sampson, Cathy
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Baillie, Jessica
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Harrison, Kim
5e4bd675-3f42-40db-8611-f2cc13c32d3d
Hope-Gill, Ben
5d476641-fe80-4478-97c8-483f119e14f6
Hubbard, Richard
e841dd58-2d17-4dbb-b8bb-16ec81a050f8
Griffiths, Gareth
7fd300c0-d279-4ff6-842d-aa1f2b9b864d
Nelson, Annmarie
9be17968-fda0-4bd8-94cd-96d772f5083c
Byrne, Anthony
c1e21b58-03e0-4b9b-a6e7-744bdd50bb17
Sampson, Cathy
f4e9783b-358f-44aa-ac8a-d77093bfd334
Baillie, Jessica
0be256d0-1e31-40e3-8932-3881fef35bcc
Harrison, Kim
5e4bd675-3f42-40db-8611-f2cc13c32d3d
Hope-Gill, Ben
5d476641-fe80-4478-97c8-483f119e14f6
Hubbard, Richard
e841dd58-2d17-4dbb-b8bb-16ec81a050f8
Griffiths, Gareth
7fd300c0-d279-4ff6-842d-aa1f2b9b864d
Nelson, Annmarie
9be17968-fda0-4bd8-94cd-96d772f5083c

Byrne, Anthony, Sampson, Cathy, Baillie, Jessica, Harrison, Kim, Hope-Gill, Ben, Hubbard, Richard, Griffiths, Gareth and Nelson, Annmarie (2013) A mixed-methods study of the Care Needs of individuals with idiopathic Pulmonary fibrosis and their carers--CaNoPy: a study protocol. BMJ Open, 3 (8), [e003537]. (doi:10.1136/bmjopen-2013-003537).

Record type: Article

Abstract

INTRODUCTION: Idiopathic pulmonary fibrosis (IPF) is a progressive, life-threatening illness of unknown aetiology, with no proven pharmacological treatments. There is a limited evidence base indicating that the disease negatively affects quality of life, leading to increased dependence, restrictions on daily activities and fatigue. However, there is a paucity of in-depth information on disease impact across its trajectory, particularly in relation to unmet needs, outcomes of importance to patients and the experiences of carers. Furthermore, little is known about the support and information needs of individuals and their carers, or at what point individual need should trigger a referral to palliative care services.

METHODS AND ANALYSIS: A mixed-methods study is proposed recruiting individuals with IPF at different stages of the disease and their carers from three respiratory centres in England and Wales. In-depth interviews will be undertaken with participants, adopting an Interpretative Phenomenological Analysis approach. The study will also use validated questionnaires to explore quality of life (EQ-5D), depression (Hospital Anxiety and Depression Scale), breathlessness (Borg dyspnoea scale) and cough (Leicester Cough Questionnaire, Cough Symptom Score).

ETHICS AND DISSEMINATION: Ethical approvals were gained in April 2012. Palliative care research is a developing field, but there has been limited focus on IPF. We anticipate that the results of the study will enable healthcare professionals to provide appropriate palliative care across the trajectory for individuals with the disease, and their carers, and we therefore aim to disseminate via relevant respiratory and palliative care journals and conferences. We will also support the lay representative involved in the project to disseminate the findings to patient groups.

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More information

Accepted/In Press date: 5 July 2013
Published date: 7 August 2013
Keywords: Journal Article
Organisations: Clinical Trials Unit

Identifiers

Local EPrints ID: 406333
URI: http://eprints.soton.ac.uk/id/eprint/406333
PURE UUID: d4200a5b-c626-417f-a8a8-3e9663cd07ea
ORCID for Gareth Griffiths: ORCID iD orcid.org/0000-0002-9579-8021

Catalogue record

Date deposited: 10 Mar 2017 10:45
Last modified: 16 Mar 2024 04:19

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Contributors

Author: Anthony Byrne
Author: Cathy Sampson
Author: Jessica Baillie
Author: Kim Harrison
Author: Ben Hope-Gill
Author: Richard Hubbard
Author: Annmarie Nelson

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