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5.0   DISCUSSION AND RECOMMENDATIONS

5.1    Introduction

The preceding section of the report provided information on the etiology, diagnosis, treatment and management of an in-depth example of chronic pain by specifically discussing fibromyalgia. Section 4.0 presents a dialogue designed to inform the Jesse & Julie Rasch Foundation of items to consider when engaging in the area of chronic pain, recommendations for areas of research to consider and identification of specific resources that are currently required. The discussion is premised by the information obtained from the environmental scan and the key informant interviews done to date with clinicians working directly with individuals with chronic pain and specifically fibromyalgia.

5.2   Research Notes
Considering the ‘state of affairs’ of chronic pain, there are selected items of importance when engaging in activities within this domain: 1) Funding Allocation for Pain Research, 2) Need for Multidisciplinary Approaches to Research, 3) Impact of Diagnostic Methods, 4) Influence of Cultural Diversity, and 5) Consequences of Pain Definitions and Reporting.

Despite the overwhelming numbers of individuals who suffer from chronic pain along with the tremendous costs to healthcare, little research money is dedicated to making advances in the area of chronic pain. "[P]ain accounts for more than 20% of medical visits and 10% of prescription drug sales, but only .6% of National Institutes of Health research funds." (Max 2003). Furthermore, the majority of pain research is conducted by relatively few clinical specialties and most often involves neurology, anesthesiology, cancer and dentistry. It is imperative that research expand to include more multidisciplinary teams such as cardiology, gastroenterology and urology in order to have an improved and broader focus of chronic pain and establish better collaboration in both research and treatment (Max 2003). In 2003, Bradshaw and colleges published a study in the Journal of Pain investigating funding patters of the NIH awards for 3 different areas, one being pain and demonstrated the need for resources in pain research. There is much to do in the progress of understanding the etiology of chronic pain, establishing specific diagnostic tools and developing effective treatments to reduce both the individual and social burden of disease caused by chronic pain disorders.

Another area to be cognitive of is diagnoses of chronic pain and specifically fibromyalgia. It is important to know that the present diagnostic criteria of the ACR method of diagnosing fibromyalgia influence the number and severity of fibromyalgia cases that are diagnosed. Originally, the ACR criterion for fibromyalgia was a classification system versus a diagnostic tool and focuses largely on pain compared to other aspects of the syndrome. A broader definition of fibromyalgia is necessary. It is feasible that the ACR approach identifies those individuals with more severe or pronounced fibromyalgia rather than an overall accurate diagnosis (Perrot et al. 2008). The diagnostic situation significantly impacts epidemiological estimates of the incidence and prevalence of fibromyalgia along with influencing what we know about risk factors, age at onset and other specific areas of inquiry. Given the importance of early and accurate diagnoses in not only fibromyalgia but all chronic pain disorders, paying particular attention to this area will aid in our ability to treat individuals suffering with chronic pain earlier with the goal of reducing morbidity.

The influence of culturally diverse characteristics is important as pain also has particular culturally relevant associations and to fully understand chronic pain from a holistic perspective more attention to the unique and heterogeneous characteristics of pain among various culturally diverse groups will lead to a better understanding of diagnosing, treating and managing not only fibromyalgia but all chronic pain disorders.
Future research must consider that the measurement of pain is challenging due to the subjective nature of reporting and interpreting pain. Attention to the numerous definitions of pain used among studies is important when comparing results across different research. Frequently a number of studies across a specific area are compared without really being aware of how different or even dissimilar the definitions of pain were constructed, measured and interpreted. Beginning the discourse around standardizing the operational definitions of pain would produce more methodologically sound research, making comparisons among studies more relevant and aid researchers and clinicians in clinical management decisions along with ultimately developing best practice guidelines.

5.3   Areas for Future Research

Previously, research in the area of chronic pain and specifically fibromyalgia has focused on how particular disorders affect the individual such as the impact of symptoms e.g., pain along with other consequences like depression. A vast majority of research in the past has investigated pharmacological agents such as anti-depressants and anti-convulsants for symptom relief. More recently, research has concentrated in the area of neuroscience and a number of studies have focused on the non-invasive imaging options (i.e., CT, MRI’s and PET as examples) with the hope of identifying pathologies and improving diagnostic availability.

Research is in a relatively infant stage concerning fibromyalgia and there are a number of newer and emerging areas. More work needs to be done in the area of genetic research and although no one gene has been isolated for a number of chronic pain syndromes, there is a growing understanding of the importance of investigating the role of genetics in chronic pain disorders. Continued research into gene isolation and the impact one’s genetic make-up has upon the development or maintenance of chronic pain is necessary. As discussed previously concerning CFS, a focus on the impact of viruses on human health and their propensity to cause chronic disease is an emerging area of study specific to chronic pain syndromes such as CFS, fibromyalgia and SLE. Furthermore, once there is a better understanding of the nature and influence of viruses, pharmacological agents can be developed in the hope of creating primary prevention measures in order to avoid developing certain chronic pain disorders from infection. Continued research into the area of neuroscience is very promising. We are beginning to better understand the role of neurotransmitters and neurohormones in chronic pain. Research must continue to examine the impact of over-production, inhibitory effects, neuronal pathways and the effect upon the modifications of such on genetic expression.

As the knowledge base grows regarding the causal agents of chronic pain, equally important work must surround diagnostic tools. In previous sections, the report has highlighted issues surrounding the ACR Classification, the potential to have both misdiagnosed and undiagnosed cases of fibromyalgia and chronic fatigue syndrome, such issues will be addressed through both a better understanding of the etiology and pathology associated with a chronic pain disorder and the development of specific and sensitive diagnostic tools to clearly identify the disorder in a particular individual. In conjunction, prospective epidemiological studies will then capture better estimates of the true prevalence of fibromyalgia and other chronic pain syndromes in the population.

Beyond the pharmacological and physiological areas of research other areas are also important. Given the biopsychological method to understanding disease involves an approach where biological, psychological and social factors all significantly impact disease, research into the effects of psychological and social factors on the development and maintenance of chronic pain disorders is vitally important. Understanding the connection between sociodemographic characteristics such as socioeconomic status will help identify individuals at higher risk of either developing chronic pain disorders or once a traumatic event has taken place, better understanding of the impact of the psychological and social factors will aid in early targeted interventions and care plans designed to shorten both the duration and severity of chronic pain. Particularly, fibromyalgia does not have a gold standard treatment nor evidenced based clinical guidelines, the efficacy of complementary and alternative therapies needs more work to better understand the empirical benefit of self-management techniques and the efficacy of alternative and complementary therapies.

5.4   Resources Requirements

Clinical

Resources identified in the environmental scan and with specific input from the key informant interviewees fall into patient and clinical areas. Patient advocacy groups such as “in the face of pain” consistently report that chronic pain too often remains untreated. Furthermore, it results from the lack of clinical intervention not because there are no pharmacological agents for treatment (Pain & Policy Group, 2007). Too often the concerns surrounding pain medication and restrictive regulatory processes impede good clinical practice. Disturbingly, the majority of healthcare professionals have very little and sometimes no formal training in pain management, yet they are expected to manage and treat chronic pain disorders, the outcome is that too many individuals do not get the necessary treatment they need and which is sadly often available (Miaskowski, C., Clearly, J., Coyne, P. et al, 2005).  Clinicians are faced with the challenges surrounding the diagnosis, treatment and management of chronic pain and specifically fibromyalgia along with structural barriers such as the amount of available clinic time to effectively provide patient-centered care to patients. Furthermore, the ideal circumstance in providing care is using a transdisciplinary model. This approach requires communication and a broad understanding of fibromyalgia from many clinical perspectives. Clinical education both during preliminary medical education and on-going continued education must provide information surrounding the advances in etiology, diagnostic criteria, treatment and management of CPD. Additionally, continued education must translate from workshops and conferences to the clinic. Many key informants stated that having resources such as a mentor, facilitated communication between specialists and primary care health care team members would help tremendously with the continuing information uptake in this area. One particular family physician stated that he would like to see a contact person made available to him in order that he could easily access quick information and verify his approach to treatment in an efficient and timely manner, likely someone to follow-up with by teleconference. “There is often excellent and very useful information presented at various forums, but sometimes I would like to simply ask a few quick follow-up questions, especially when new pharmacology agents and other treatments are consistently changing” (Key Informant).

Patient

Another over-riding theme from the key informant interviews pertained to the limited office or clinic hours available to the clinical team and the absolute necessity of providing one-on-one care for patients with fibromyalgia. Family physicians stated over and over again during interviews that patient education resources were too sparse and it was consistently difficult to spend the time necessary to educate patients about all the different aspects of their syndrome. As an example, one physician explained a hospital based program for patients with fibromyalgia. He realized that he was very fortunate to have such a program in his community and refers all patients who are diagnosed with fibromyalgia. More programs are required as they not only provide patient education, they also provide the patient the opportunity to maintain control of their care by being informed and provide critical social networking and support, which is directly related to positive outcomes for those individuals with fibromyalgia who are able to participate in group processes.

The economic impact of fibromyalgia has been discussed and directly impedes some patient’s ability to access third party treatment options such as physical therapy, massage therapy and other co-pay or out of pocket expenses. A pain specialist interviewed for the project and who specifically deals with patients who no other forms of treatment have provided relief often sees patients who have no choices left in terms of pain control. Overwhelmingly, a majority were unable to get early treatment for a trauma because of socio-economic issues. In some cases, wait times were simply too long and the patient deteriorated while waiting for specialized care. In other instances, accessing health care services is simply a financial barrier.  Either way, the availability to both affordable and accessible services would improve an individual’s likelihood of trying a number of treatment modalities in order to successfully find the right combination for success and reduce the suffering associated with fibromyalgia.

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