Fibromyalgia: An Environmental Scan
Table of Contents
3.1 Academic and Gray Literature Search: Databases
The academic literature was retrieved from the following databases: PubMed, CINAL, EMABASE and Scholars Portal Research and numerous electronic sources of information. Identified keywords were used along with other parameters that included: years 2005-2009, English language and human subjects were the criteria for original searches.
3.2 Strategies and Keywords
In order to research all necessary elements in the environmental scan, both lay and clinical terms associated with chronic pain along with specific searches by pain topic were completed e.g., fibromyalgia. Appendix A: Search Strategy: Keyword Summary details the selected key words used in all searches that gathered information contained within this report. Initially, searches were performed using ‘chronic pain’ and were followed by secondary level terms such as ‘fibromyalgia’ and ‘chronic fatigue syndrome’. Subsequent to the broad searches, tertiary terms e.g., epidemiology, treatment and other pertinent domains were used to create the overall search strategy. The process continued until information was gathered using all the terms listed in Appendix A.
3.3 Websites and Organizations
The electronic information reviewed for the environmental scan used several search engines: Google, Google Scholar, Mozilla Firefox and numerous RSS Feeds. The electronic references represent the vast portion of gray literature in the final report. For a complete list of organizations and electronic resources see Appendix B: Organizations and Electronic Resources: Information and Blogs.
3.4 Key Informants
The compilation of Key Informants was executed by the epidemiologist commissioned for this project. The selection criteria was based on gathering a cross-section of identified champions with backgrounds in academic research, clinical experience from both primary health care and pain specialties. Of the key informant interviews completed to date, a semi-structured interview guide was used and interviewees were queried regarding research priorities and resource needs in the area of fibromyalgia. All interviews were completed by teleconference except for one in-person interview. The scope of the project was redefined after the first key informant interview was complete. As a result, the remaining key informants were also prompted to provide information and their experiences in the area of chronic pain in general. No other specific pain disorders were discussed in detail beyond fibromyalgia. The key informant interview elements are incorporated in the final report. For a complete list of the selected key informants and the semi-structured interview guide see Appendix C: List of Key Informants and Appendix D: Key Informant Interview Guide.
Of all completed interviews, there were recurring themes surrounding the need for resources and research in the area of chronic pain and specifically fibromyalgia. Additionally, each interviewee (without prejudice) explicitly stated there was a crucial need for clinical education of health care professionals and patient education in the area of fibromyalgia. Several interviewees highlighted the relatively sparse amount of medical education dedicated to chronic pain. Furthermore, clinicians working in family medicine lack the necessary time required to provide patient education surrounding fibromyalgia despite that the level of information necessary for the successful management of fibromyalgia is extensive. Repeatedly, all key informants expressed the need for resources in the area of community and/or hospital based educational programs to directly support patients with fibromyalgia. It was noted that it is important to continue to work for better diagnostic tools and effective treatment modalities; many key informants stressed that until such goals are realized resources must continue to assist those already suffering from fibromyalgia (and other chronic pain syndromes). Resources dedicated to the current patient population are a priority along with continued efforts to understand definitive causes and develop treatments for chronic pain. “We cannot become over focused on answering burning questions such as what causes fibromyalgia and what are the most formidable treatments, as this will take time, we must also focus on those who are currently living with this elusive syndrome now and resources that will benefit this patient population in the shorter-term are also necessary” (Key informant).