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.
1. Before their initial intake appointment, all CCDP patients are given a patient binder that includes the baseline Standardized Questionnaires. These are clinical questionnaires that all patients complete regardless of whether or not they consent to participation in research. In addition to the questionnaires completed at baseline, patients who consent to participate in the data registry will complete the questionnaires, via email or paper copy, at the following time points: approximately 6 months after intake, at discharge and 3 months post-discharge. 2. Patients who consent to the data registry will also be asked to complete a short questionnaire collecting basic demographic information at baseline. The demographic questionnaire will be either mailed to their home or sent via an online link; the investigators will ask participants to complete this form either before or when they come in for their first in-person visit at the CCDP. 3. Additional data will be collected and entered from the clinical chart. Specifically, after the patient's initial clinic appointment, the Research Coordinator or designate will enter data points from the Interdisciplinary Assessment Tool, into REDCap.
Study Type
OBSERVATIONAL
Enrollment
1,300
BC Women's Hospital + Health Centre
Vancouver, British Columbia, Canada
Change in quality of life
Change in self-reported quality of life assessed by structured questionnaire (36 Item Short Form Health Survey (SF-36))
Time frame: Baseline (pre-intake), 6 months, discharge (an average of 21 months), 3 months post-discharge
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.
Time frame: Baseline (pre-intake), 6 months, discharge (an average of 21 months), 3 months post-discharge
Fatigue Severity Scale (FSS)
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.
Time frame: 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.
Time frame: 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.
Time frame: Baseline (pre-intake), 6 months, discharge (an average of 21 months), 3 months post-discharge
Patient Health Questionnaire 9 (PHQ - 9)
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The PHQ-9 is a self-reported standard questionnaire used to screen, diagnose, monitor and measure the severity of depression.
Time frame: 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.
Time frame: Baseline (pre-intake), 6 months, discharge (an average of 21 months), 3 months post-discharge