Pain Management

Members of the bleeding disorder community have been aware for some time that their pain, both acute and chronic, hasn’t always been appropriately managed. The topic was discussed at a panel presentation held during the Canadian Hemophilia Society (CHS) Medical Symposium at Mont-Tremblant, Quebec, in May 1999.

Three adults shared their experiences with pain, its impact on their lives and their difficulty finding effective care. A pain specialist spoke about the range of options available to deal with severe pain, the barriers to getting effective pain treatment as well as two very important issues—the education of health care professionals about the various aspects of pain assessment and treatment, and the need for pain assessment being a part of the Hemophilia Treatment Centre’s routine process.

In the early fall of 2001, to determine whether the experiences described by members of the Mont-Tremblant panel were representative of other people with bleeding disorders, the CHS developed a survey which was sent to all the Hemophilia Treatment Centres (HTCs) in Canada. It was administered through an interview with an adult, teen, or parent of a younger child. The interviewers asked about the person’s experience with acute and chronic pain, his personal support systems, his opinion of his quality of life, and, if pain was an issue, what strategies he used to deal with it. Eighteen interviews were conducted in all. Although the numbers were small, the opinions expressed were consistent across all clinics.

In summary, the results reinforced the message that pain experienced by people with hemophilia is not well understood, assessed or treated. Forty percent of the people interviewed reported having pain all the time. Children also have pain and often have difficulty describing the level of their pain. The most common reasons given for not taking medication are that the pain isn’t considered bad enough, the side-effects are a problem or that access to a pain specialist is difficult.

When asked what the CHS could do to help, one person said, “Encourage open discussion of pain and any and all subjects related to it. Suffering along in silence is certainly not the way to cope.”

To this end, Hemophilia Today, the newsmagazine of the CHS, has published a series of feature articles related to pain management written by knowledgeable people.

At the CHS 50th Anniversary Weekend in Montreal, May 8-11, 2003, a consumer workshop provided an opportunity for people with bleeding disorders and their families to share experiences and ideas, hear a presentation on treatment options, experience advocacy training and discuss options with health care providers.

With the knowledge gained from these initiatives, the CHS, in 2005, published a new resource entitled Pain – the Fifth Vital Sign. The CHS would like to thank Wyeth for providing the funding for the development and publication of this resource.

Pain – the Fifth Vital Sign PDF