New person-centred care tool for progressive conditions

The tool, created by academics at University of East Anglia (UEA) and University of Cambridge, allows patients to identify and then express their support needs to healthcare professionals.

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

Dr Morag Farquhar

As part of the new study, which was funded by the National Institute for Health Research and the charity Marie Curie, the research team started by identifying a range of areas that patients with advanced Chronic Obstructive Pulmonary Disease (COPD) needed extra support with.

They found 15 broad themes ranging from overcoming loneliness and dealing with depression, to coping with financial problems and knowing what to expect in the future.

Following this, the team developed a tool to help patients talk to healthcare professionals about their needs via a series of 15 questions.

The tool – named the Support Needs Approach for Patients (Snap) – has been described by the researchers as a healthcare intervention tool designed to ask patients to consider areas where they need more support in a drive to improve person-centred care.

Though the evidence-based SNAP was developed with COPD patients and their carers, the university experts state that it is now being offered to patients with other progressive conditions too.

In addition, the tool has been included in a new set of criteria called ‘The Daffodil Standards’, which, as previously reported by Nursing Times, are a set of quality improvement statements designed to support primary care teams to deliver care to patients living with an advanced, serious illness or at the end of their lives.

General practices 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,” she said.

Dr Farquhar highlighted that “patients often have difficulty reporting their support needs to health care professionals” which then means that “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,” said Dr Farquhar.

As part of their research, the team of university experts studied 31 published papers about COPD supports needs, as well as interviews with 20 patients with advanced COPD to draw up a draft list of support needs.

“We asked patients and carers which support areas were particularly important to them”

Dr Carole Gardener

In addition, the researchers also 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,” she said.

Patients also flagged up a need for practical support for things like cooking, personal care, and support for carers such as respite care, Dr Gardener explained.

Drawing upon the evidence they collected, the researchers created a set of 15 questions to enable patients to express their support needs.

“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.”

The paper – Enabling patients with advance 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.

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