A study on the experiencet of individuals with contested disorders in the modern medical climate
Background
So called “contested disorders” form an important part of any primary care practice. These are disorders that fail to fall into any clear physiologic or psychiatric categorization, and in the West, are mostly comprised of the following entities:
- fibromyalgia
- multiple chemical sensitivity syndrome (MCSS)
- chronic fatigue syndrome (CFS)
- a host of other difficult to label disorders including such bizarre and specific claims as Morgellon’s disease (!) (http://www.healthsciences.okstate.edu/morgellons/index.cfm)
Each of these has diagnostic criteria that are more or less accepted by the medical establishment, hence leading to instances of conflict with that establishment or with individual practitioners. Many in the establishment believe that contested disorders are instances of somatization stemming from unrecognized or co-morbid psychiatric disorders, leading to potential conflict with the patient. There is evidence however, that in order to treat these comorbidities, a great deal of trust needs to be achieved between the patient and the treating team.
Research question: three pronged
To what extent do sufferers of contested disorders have co-morbid psychiatric disorders and in the case of co-morbidity, what are their experiences like with regards to response from their treatment team and to what extent are they willing to be treated for these comorbidities?
Study description
We will undertake a mixed methods analysis in order to
- estimate the incidence of contested disorders in a primary care, multi-disciplinary practice in Ottawa, Canada, using a survey and standard diagnostic criteria, but also probing for self-perception of having a contested disorder
- amongst these, and also using a survey, estimate the incidence co-morbid psychiatric disorders using validated questionnaires such as the PHQ-9 for depression
- for those sufferers of co-morbidity, engage them further in one or several focus groups to try and assess temporal relationships and further details on the experience of living with a contested disorder
Types of questions to be asked:
- do you think you suffer from one or more of: fibromyalgia, CFS or MCSS (diagnostic criteria provided)
- do you think you have another disorder that has not been properly diagnosed by your health care team? Please specify in detail. (only disorders which are contested in the medical literature will be explored further)
- what has the experience of having this disorder been like?
- has the health care team supported you with your disorder? Can you comment on the individual responses e.g. doctor, nurse, social worker, pharmacist etc.
- has the health care team answered your questions about your disorder?
- where do you get most of your support? What do your family/your friends say about your disorder?
- have you sought help for this disorder in other contexts or countries?
Narrative content of the surveys will be analyzed for themes and reread until thematic analysis reaches saturation. These themes will then be re-explored in depth during the focus group portion of the study, focusing on any ideas around the following topics:
- trust, conflict, isolation
- patterns of communication with the health care team
- different responses by the health care team
- thoughts around and presence of depression and other psychiatric disorders
- willingness to be treated for these co-morbidities
- effect of family, wider society and culture.
