June 17, 2021

Researcher develops patient-reported compassion measure for health care

Measure will have applications in both clinical and research settings
Shane Sinclair
Shane Sinclair has developed a patient-reported compassion measure.

Patients may soon be able to measure their experiences of compassion within health care thanks to a new study by a University of Calgary researcher.

Dr. Shane Sinclair, PhD’09, developed the Sinclair Compassion Questionnaire (SCQ) based on data gathered from more than 600 patients in acute care, long-term care and hospice settings in a study funded by the Canadian Institutes of Health Research (CIHR).

“There was nothing out there that was developed from the perspective of patients directly,” says Sinclair, an associate professor in the Faculty of Nursing and director of the Compassion Research Lab.

While there are other tools that attempt to measure compassion, Sinclair says they have significant limitations, including a self-reporting bias, and they often use poorly developed definitions and empirical models of compassion.

In the SCQ, Sinclair has developed a valid and reliable patient-reported compassion measure to allow researchers, health-care providers, system leaders and governments to assess, monitor and improve this key ingredient of patients’ experience of health care.

How the SCQ works

Sinclair and his team began systematically planning for the development of the measure back in 2013, when they were encouraged by researchers and health-care providers to develop the measure based on their initial groundbreaking studies. However, like building a new house, they wanted to ensure the foundation of what they were measuring ­­— the concept of compassion — was solid, so they crafted a patient-derived definition and model of compassion on which the measure is built.

That definition, containing all the key components of compassion, is:

A virtuous response that seeks to address the suffering and needs of a person through relational understanding and action.

From this foundation, Sinclair developed the 15-question SCQ, which is intended for both research and clinical purposes, to be administered to patients on a routine basis during their care experience to measure their ongoing experience of compassion from their health-care providers in real time.

Patients are asked to respond to the questions such as, “My health-care providers saw me as a person, not just a patient,” on a five-point scale from “strongly disagree” to “strongly agree.” The results from all of the questions are added up and averaged to provide health-care providers with a comprehensive, patient-reported compassion score.

It also offers health-care providers the ability to see how well they are doing on a single question, such as if they are speaking to the patient with kindness or providing care in a gentle manner.

Sinclair and his team also validated a “side-scale” version of the SCQ that asks patients not about their experience of compassion, but how important each aspect of compassion is to them as an individual.

“It allows us to say, ‘What’s important to you and how can we tailor our compassion to how you best receive compassion, not simply based on how we best express compassion or assume you experience compassion’,” Sinclair says.

Why compassion matters

Sinclair points to several impetuses for developing the measurement, including a number of research studies, formal health inquiries and survey data from patients that strongly suggest compassion is lacking from their experience of health care.

“What they discovered within these particular health-care systems was a rampant lack of compassion was the main culprit for low patient satisfaction, increased patient complaints, low-quality care ratings and increased adverse health events,” Sinclair says.

Sinclair says compassion seems to be the glue of peoples’ health-care experience: you can get good access to care, receive cutting-edge treatments, and be treated by highly qualified teams, but the gel is receiving all of that with compassion. In fact, Sinclair continues, studies show that, even if a patient receives subpar health care, and there are some mistakes made, compassion can often allay these shortcomings.

Compassion to the forefront

Sinclair says he hopes compassion will be routinely measured in an ongoing basis alongside other health outcomes. Translating the measure into practical use, he would like to eventually see the SCQ be used in electronic medical records and patient dashboards, allowing patients and families to determine things such as which long-term care home to place their loved ones in, based on the compassion scores of those facilities.

Sinclair says the CIHR funding is a sign that compassion in health care is being taken more seriously by the government and health-care systems. The study has also been published in the British Medical Journal Open.

Accreditation Canada/Health Standards Organization, the body responsible for health-care accreditation, is considering formation of a working group to look into compassion becoming a component of health-care institution accreditation.

The next step, Sinclair says, is to get the SCQ formally adopted by health-care systems: “My desire is to get this embedded in health care so that it can have an impact at the bedside.

“If this is supposedly so important to people’s overall experience, and most health-care providers genuinely desire to provide it, when a lack of compassion is one of the biggest drivers for malpractice suits and patient complaints, are we not obliged, in a system called ‘health care,’ to measure the optimal form of care: compassion?”

Shane Sinclair is an associate professor and cancer care research professor with the Faculty of Nursing. He is also the director of the Compassion Research Lab and a member of the Alberta Children's Hospital Research Institute and Annie Charbonneau Cancer Institute at the Cumming School of Medicine.