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| Name | Class |
|---|---|
| Ministry of Health, British Columbia | OTHER_GOV |
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The purpose of this data registry is to prospectively collect data from patients referred to an Complex Chronic Diseases Program (CCDP) at BC Women's Hospital + Health Centre to assess the quality of life of the CCDP Patients before, during and after their care at the CCDP.
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| Measure | Description | Time Frame |
|---|---|---|
| Change in quality of life | Change in self-reported quality of life assessed by structured questionnaire (36 Item Short Form Health Survey (SF-36)) | Baseline (pre-intake), 6 months, discharge (an average of 21 months), 3 months post-discharge |
| Measure | Description | Time Frame |
|---|---|---|
| Brief Pain Inventory Short Form (BPI-SF) | The BPI-SF is a self-reported standard questionnaire used to evaluate the severity of pain and the impact of this pain on the patient's daily functioning. | Baseline (pre-intake), 6 months, discharge (an average of 21 months), 3 months post-discharge |
| Fatigue Severity Scale (FSS) |
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Inclusion Criteria:
Exclusion Criteria:
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Patients of the Complex Chronic Diseases Program at BC Women's Hospital + Health Centre all have signs, symptoms or a diagnosis of: Fibromyalgia (FM), Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (ME/CFS), and/or Chronic Lyme-Like Syndrome (CLLS).
The factors involved in causing all three of these diseases are not well understood (Jain et al. 2003, Wolfe et al. 2010, Carruthers et al. 2003). Furthermore, symptoms, severity of symptoms and the effects of all of these complex chronic diseases can vary greatly among people with the same diagnosis.
All of these conditions are currently diagnosed according to the particular group of symptoms described by the patient.
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| Name | Affiliation | Role |
|---|---|---|
| Luis C Nacul, MD | Medical Director CCDP, Complex Chronic Care Clinic | Principal Investigator |
| Wee-Shian Chan, MD | Department Head, Medicine | Study Chair |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| BC Women's Hospital + Health Centre | Vancouver | British Columbia | V6H 3N1 | Canada |
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| ID | Term |
|---|---|
| D005356 | Fibromyalgia |
| D015673 | Fatigue Syndrome, Chronic |
| D005221 | Fatigue |
| D010146 | Pain |
| D059350 | Chronic Pain |
| ID | Term |
|---|---|
| D009135 | Muscular Diseases |
| D009140 | Musculoskeletal Diseases |
| D012216 | Rheumatic Diseases |
| D009468 | Neuromuscular Diseases |
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The FSS is a self-reported standard questionnaire that uses a scale to measures the severity of the fatigue and its effect on a person's activities and lifestyles in patients with a variety of disorders. It uses a 7- point Liker scale, where 1=Strongly Disagree and 7= Strongly agree. Score range is 1-7. Higher schore indicates more severe fatigue. |
| Baseline (pre-intake), 6 months, discharge (an average of 21 months), 3 months post-discharge |
| McGill Pain Questionnaire Short Form | The McGill Pain Questionnaire Short Form is self-reported standard questionnaire. It is used to describes the subjective overall intensity of the total pain experience. | Baseline (pre-intake), 6 months, discharge (an average of 21 months), 3 months post-discharge |
| Pittsburgh Sleep Quality Index (PSQI) | The PSQI is a self-reported standard questionnaires. It is used to assess sleep quality and disturbances. | Baseline (pre-intake), 6 months, discharge (an average of 21 months), 3 months post-discharge |
| Patient Health Questionnaire 9 (PHQ - 9) | The PHQ-9 is a self-reported standard questionnaire used to screen, diagnose, monitor and measure the severity of depression. | Baseline (pre-intake), 6 months, discharge (an average of 21 months), 3 months post-discharge |
| Generalized Anxiety Disorder - 7 item (GAD - 7) | The GAD-7 is a self-reported standard questionnaire used to measures the severity of various signs of general anxiety disorder according to response categories with assigned points. | Baseline (pre-intake), 6 months, discharge (an average of 21 months), 3 months post-discharge |
| D009422 |
| Nervous System Diseases |
| D004679 | Encephalomyelitis |
| D000090862 | Neuroinflammatory Diseases |
| D002908 | Chronic Disease |
| D020969 | Disease Attributes |
| D010335 | Pathologic Processes |
| D013568 | Pathological Conditions, Signs and Symptoms |
| D012816 | Signs and Symptoms |
| D009461 | Neurologic Manifestations |