Editor’s note: The following is part five of a five-part series of articles on RELIEF covering the IASP Global Alliance of Pain Patient Advocates (see part one here, part two here, part three here, and part four here).
As part of the International Association for the Study of Pain (IASP)’s new Global Alliance of Pain Patient Advocates (see RELIEF related story here), the 2018 IASP World Congress on Pain held in Boston featured “The Global State of Pain Management,” a workshop highlighting the findings of two surveys assessing access to care and attitudes surrounding pain across the world.
The surveys suggest that, while there are many cultural differences regarding how pain is perceived around the globe, there are many opportunities to better educate patients, providers, and policymakers about the experience of living with persistent pain.
“How can we begin to improve access to care without healthcare providers and policy makers understanding the issues around pain?” said Penney Cowan, the founder and chief executive officer of the American Chronic Pain Association, as she introduced the session. “We hope to educate Congress attendees that it’s not just about pain—it’s about access to care, quality of life, costs, and impact on family members.”
Attitudes and access, in the US and abroad
Cowan discussed “Attitudes and Access to Pain Care,” an online survey fielded by the International Alliance of Patients’ Organizations, which promotes patient-centered healthcare around the world. The survey had 710 respondents from 37 countries in North America, Europe, Africa, and Pakistan. She highlighted what those respondents had to say about their pain, as well as their interactions with healthcare providers.
“Some of the data was about what you might expect to see. 51% had experienced pain for 10 years or more. 78% were females. 80% were 40 years or older,” she explained. “But then you look at what people said about their doctors. While 75% of our respondents thought that their healthcare providers took their pain seriously, only 26% thought that their provider had a good understanding of pain.”
Cowan concluded that healthcare providers need more training in pain management to deal with these issues.
“Most healthcare providers get maybe two hours of professional education about pain management, and most of that is on prescribing,” she said. “In contrast, veterinarians get 80 hours of pain management training. There’s something wrong there.”
Cowan added that she and the International Alliance of Patients’ Organizations would like to refine the questions on the survey and re-field it in the future.
“Things have changed since we first put this survey out there—there is a lot more attention being paid to pain at the global level, which may change some of the responses,” she said. “And there are pieces we did not look at, like how families and caregivers are affected by pain. I think we forget about families when we talk about pain and pain care—and we shouldn’t.”
A view from Pakistan
Hussain Jafri, vice chair of the advisory group of the World Health Organization’s Patients for Patient Safety (PFPS) program and former chair of the International Alliance of Patients’ Organizations, piloted the same survey at the Mayo Hospital pain clinic in Lahore, Pakistan. He translated the questions into Urdu, the primary language spoken in Lahore, and then fielded the survey on paper since the patients there did not have access to computers. He said there were some interesting cultural differences in the responses from the Pakistani patients, compared to patients in Western nations.
“We saw that 100% of the respondents thought their doctors took their pain seriously and the doctor was understanding. It seems simply being a doctor was good enough for patients,” he said. “But they may have been giving us socially desirable answers as we conducted the survey in the clinic.”
One curious finding was that none of the patients who took the survey were taking opioid medications to manage their pain. But Jafri said this was likely due to cost. In Pakistan, patients pay 100% out-of-pocket for pain medications. He further noted that costs, in general, were one of the biggest burdens to effective treatment—all of the respondents said they were financially responsible for all costs and the majority found it a burden. Yet, despite this, most said they were coping quite well with their conditions.
“This is quite different from what we see in other countries. It may be a cultural difference, it may be because we asked these questions in the clinic,” he said. “We need to have more qualitative research to understand the differences we see in such answers,” he noted, referring to research that focuses on the patient experience of pain.
From the European side of the world
Jolanta Bilińska, from Poland’s Patient Safety Foundation, Łódź, Poland, and Liisa Jutila, representing Pain Alliance Europe (PAE), an umbrella organization of 18 European Union nations, Brussels, Belgium, talked about the impact of chronic pain across Europe.
Bilińska discussed how government policy changes, including a new law that protects patients’ rights in Poland, have helped encourage healthcare providers to put a new focus on pain management.
“Healthcare providers are now responsible not only for treating the underlying conditions but also for helping patients manage any pain that may accompany those conditions,” she said. “This change in policy has helped make healthcare providers more aware that there are effective methods of pain management.”
She went on to say that in the future, such changes in national policy could help drive changes in healthcare provider education, as well as access to improved treatments for patients.
Finally, Jutila shared the results of a number of European surveys on chronic pain conducted by PAE. The umbrella organization saw similar trends as the International Alliance of Patients’ Organizations survey regarding patient attitudes about pain, and about healthcare providers’ understanding of pain. But it also fielded important questions about how chronic pain conditions affect employment. Jutila noted that more than 50% of respondents reported that pain kept them from working full-time and 66% indicated that their income had dropped. So, chronic pain affects both a patient’s financial well-being as well as local and national economies. Such information, she said, is very important to inform public policy decisions concerning healthcare treatment and benefits.
“Patient organizations can become more reliable advocates when they can offer healthcare providers and politicians data that shows the effects of living with persistent pain,” she said. “Patients are the ones who are directly affected by pain, but if the people who hold the money aren’t involved, nothing can change.”
The session speakers said they would like to see further survey research to help inform patients, providers, and policy makers across the world about the impact of living with pain, and then use that data to help facilitate change. Francis D’Costa, a physician from King’s College Hospital in London, UK, told RELIEF he found the session very informative, and plans to take the survey data back to his colleagues in the United Kingdom to help facilitate some of that change in his own clinic.
“Funding for pain clinics in the UK is being restricted because we can’t ‘cure’ the problem in just a few visits,” he said. “This data can help me make the argument about just how widespread the problem of chronic pain is, and make the argument that we may need to consider a different approach in order to effectively deal with it.”
Kayt Sukel is a freelance writer based outside Houston, Texas.
Editor’s note: The development of the IASP Global Alliance of Pain Patient Advocates is supported by an educational grant from Teva Pharmaceuticals. RELIEF’s news team is editorially independent of all sponsors and of IASP, the publisher of RELIEF. All editorial decisions about RELIEF’s coverage of IASP activities are made solely by the RELIEF editors, and all content is provided by independent, professional freelance science journalists.