A new tool identifying broad areas of need by patients receiving palliative or end-of-life care may improve personalized care for patients with advanced chronic obstructive pulmonary disease (COPD) and promote more holistic care.
The study detailing the development of SNAP, as the tool is called, was published in the journal Palliative Medicine, and titled “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.”
Individuals with advanced COPD can experience a combination of physical, psychological, and social distress. Still, these patients often do not receive needed support, and care approaches among them are variable.
Although guidelines for patients with long-term, chronic conditions advocate for the use of tools to assess health status, they mainly focus on the patient’s disease burden, functionality, or worries. Assessment strategies are also often limited, and do not cover areas involving supportive needs to manage life during palliative or end-of-life care.
“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,” Morag Farquhar, PhD, a study’s lead author, from University of East Anglia’s School of Health Sciences, U.K., said in a University press release.
“It is internationally recognized that delivering holistic, needs-led, person-centred care is a top priority. But patients often have difficulty reporting their support needs to healthcare professionals, which means they don’t always get the person-centered care they need,” Farquhar added.
To fulfill this need, the team developed a tool that, based on evidence, allows patients to more clearly identify and express their needs, covering different aspects of their daily lives.
First, researchers reviewed literature, analyzed existing baseline (initial) interviews with patients or caregivers, and received reviews from focus groups with new patients and caregivers. Based on the data collected, they then developed the Support Needs Approach for Patients (SNAP) tool, and further refined it with the help of patient-provided feedback.
The team reviewed 31 publications, and conducted interviews with 20 patients with advanced COPD at four primary care practices in the U.K. or with caregivers (spouses or community supporters). Patients and caregivers were asked about support areas that they found important, or areas where they felt they had limited access.
“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,” said Carole Gardener, PhD, the study’s first author, with the University of Cambridge.
“They also wanted practical support for things like cooking, personal care, and support for carers such as respite care,” Gardener added.
These responses resulted in the SNAP tool, which is a short and straightforward questionnaire containing 15 questions that can help patients to express their support needs to healthcare professionals.
“This is more than just a set of 15 questions,” Farquhar said. “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 tool is now included in the so-called Daffodil Standards, which is a new set of criteria aimed at improving the palliative care of COPD patients in primary practice.
While the SNAP tool was initially designed for COPD patients and their caregivers, it is now offered to patients with other progressive diseases.
This study was funded by the National Institute for Health Research (NIHR) and Marie Curie, a U.K. palliative care and support center. Healthcare professionals wishing to learn more about this tool, or to use it in clinical practice or research can request a license on the SNAP website.