Nav: Home

Pioneering research to deliver person-centred care

March 07, 2019

Researchers at the University of East Anglia and University of Cambridge have developed a way to help people with progressive conditions receive better person-centred care.

From overcoming boredom or loneliness to knowing what to expect in the future, the team started by identifying a range of areas that patients with advanced Chronic Obstructive Pulmonary Disease (COPD) need extra support with.

In a new study published today, which was funded by the National Institute for Health Research (NIHR) and Marie Curie, they identified 15 broad areas that patients need additional help with, and created a tool to help them express these needs to health care professionals.

The resultant Support Needs Approach for Patents (SNAP) is a health care intervention, which asks patients to consider areas where they need more support.

It is hoped that the concise evidence-based SNAP tool will improve person-centred care and help patients identify their support needs - which can then be discussed with a health care professional.

While the tool was developed with COPD patients and their carers, SNAP is now being offered to patients with other progressive conditions.

And it has been included in a new set of criteria called 'The Daffodil Standards' for improving palliative and end of life care in primary practice. GP surgeries can now display a daffodil mark as a sign of commitment to improving end of life care, as part of a partnership between the Royal College of GPs and the terminal illness charity Marie Curie.

Lead researcher Dr Morag Farquhar, from UEA's School of Health Sciences, said: "We know that patients with advanced long term conditions such as COPD experience disabling physical symptoms, which are often combined with psychological and social distress.

"It is internationally recognised that delivering holistic, needs-led, person-centred care is a top priority.

"But patients often have difficulty reporting their support needs to health care professionals, which means they don't always get the person-centred care they need.

"We wanted to develop an evidence-based tool to enable patients to identify and express their individual needs relating to different aspects of their life."

The research team studied 31 published papers about COPD support needs, as well as interviews with 20 patients with advanced COPD to draw up a draft list of support needs.

They then carried out focus groups with both patients and their carers to road-test the list.

Dr Carole Gardener, from the University of Cambridge, said: "We asked patients and carers which support areas were particularly important to them and why, and we talked about what support they would like but had not had access to.

"They said they wanted things like support to manage breathlessness and tiredness, information about exercising safely, dealing with anxiety and depression, coping with sources of stress such as financial problems and help with sorting out bills and benefits.

"They also wanted practical support for things like cooking, personal care, and support for carers such as respite care."

Using all of this evidence, the team developed a list of 15 questions to enable patients to express their support needs. The tool is short and simple to use for both patients and health care professionals.

"This is more than just a set of 15 questions," added Dr Farquhar. "It underpins a five-stage intervention for use in clinical practice, and it can also be used as a standalone tool in research studies seeking to identify areas of unmet support need in patients with progressive conditions."
-end-
'Enabling patients with advanced Chronic Obstructive Pulmonary Disease to identify and express their support needs to health care professionals: a qualitative study to develop a tool' is published in the journal Palliative Medicine.

For more information, visit https://thesnap.org.uk/.

University of East Anglia

Related Copd Articles:

Treatment seeks to address exacerbations of COPD
A new study finds that delivery of oxygen via high-flow nasal tubes may help patients who experience exacerbations of chronic obstructive pulmonary disease (COPD).
Study reveals surprises concerning COPD and smoking
A new study challenges the widely accepted but oversimplified description of airway inflammation in smokers and patients with chronic obstructive pulmonary disease (COPD).
New guidelines for treatment and management of COPD exacerbations
A multi-disciplinary ERS/ATS task force of chronic obstructive pulmonary disease (COPD) experts has published comprehensive new guidelines on the treatment of COPD exacerbations.
New genetic markers for COPD discovered
In a new Research Letter published in Nature Genetics on Feb.
COPD -- what causes the lungs to lose their ability to heal?
In chronic obstructive pulmonary disease (COPD), the patients' lungs lose their ability to repair damages on their own.
New technology detects COPD in minutes
Pioneering research by Professor Paul Lewis of Swansea University's Medical School into one of the most common lung diseases in the UK, Chronic Obstructive Pulmonary Disease, has led to the development of a new technology that can quickly and easily diagnose and monitor the condition.
COPD exacerbations lead to lung function decline, particularly among those with mild COPD
Acute exacerbations of chronic obstructive pulmonary disease, or COPD, are associated with significant long-term lung function loss, according to research published online, ahead of print in the American Thoracic Society's American Journal of Respiratory and Critical Care Medicine.
Depression decreases adherence to COPD maintenance medications
A recent study in the Annals of the American Thoracic Society found that in a nationally representative sample of Medicare beneficiaries who were newly diagnosed with COPD, adherence to maintenance medications decreased with new episodes of depression.
Care for COPD: Could more be done?
Meilan Han, M.D., an associate professor of internal medicine at the University of Michigan and the medical director of the U-M Women's Respiratory Health Program, is the lead author on a new report that set out to provide a comprehensive view of COPD care in the US.
COPD symptoms common among smokers, even when undiagnosed
A new study in the New England Journal of Medicine finds that smokers, who wouldn't typically be diagnosed with chronic obstructive pulmonary disease, or COPD, are still showing symptoms consistent with the diagnosis.

Related Copd Reading:

Best Science Podcasts 2019

We have hand picked the best science podcasts for 2019. Sit back and enjoy new science podcasts updated daily from your favorite science news services and scientists.
Now Playing: TED Radio Hour

Digital Manipulation
Technology has reshaped our lives in amazing ways. But at what cost? This hour, TED speakers reveal how what we see, read, believe — even how we vote — can be manipulated by the technology we use. Guests include journalist Carole Cadwalladr, consumer advocate Finn Myrstad, writer and marketing professor Scott Galloway, behavioral designer Nir Eyal, and computer graphics researcher Doug Roble.
Now Playing: Science for the People

#529 Do You Really Want to Find Out Who's Your Daddy?
At least some of you by now have probably spit into a tube and mailed it off to find out who your closest relatives are, where you might be from, and what terrible diseases might await you. But what exactly did you find out? And what did you give away? In this live panel at Awesome Con we bring in science writer Tina Saey to talk about all her DNA testing, and bioethicist Debra Mathews, to determine whether Tina should have done it at all. Related links: What FamilyTreeDNA sharing genetic data with police means for you Crime solvers embraced...