Table 3.
MDA-CPSC data collection tools
| A. PHDB modules | Variables |
|---|---|
| Demographics | Date of birth, sex, primary language, education level, religious preference, race/ethnicity and place of birth |
| Occupation | Selection from a list of occupations |
| Exposures | Exposures known or suspected to be associated with cancer risk, including: asbestos, dust, vehicle exhaust, solvents, ionizing radiation, radon, excessive sun exposure and selected chemicals |
| Tobacco and alcohol use history | Frequency, type and duration |
| Past medical history | Illnesses and conditions by age and year of occurrence. Subsections: heart and blood vessels, brain and nerves, lungs, stomach/intestines, kidney/bladder, blood disorders, immune system, joints/skeleton, liver, endocrine, psychological/psychiatric, skin disorders, genetic diseases and genitourinary |
| Past cancer history | Age and year for previous cancers; summary of treatments received |
| Family history | Cancer diagnoses and age/dates for first- and second-degree relatives |
| Review of systems | Overview of current medical problems and comorbidities by system. Subsections: general, neurological, head and neck, breast, cardiovascular, respiratory, gastrointestinal, genitourinary, musculoskeletal, skin, endocrine, haematology/lymph, psychological, female and male |
| Substance misuse | Use during the past 6 months, including: amphetamines, cocaine/crack, heroin, methamphetamines, hallucinogens, inhalants, marijuana and barbiturates |
| Symptom burden (MD Anderson Symptom Inventory; MDASI) | Assesses 13 common cancer-related symptoms: pain, fatigue, nausea, vomiting, dry mouth, shortness of breath, lack of appetite, difficulty remembering, drowsiness, disturbed sleep, sadness, distress and numbness |
| Quality of Life (Short Form-12; SF-12) | General health-related, 12-items, physical and mental components of health |
| B. Clinical data available for abstraction from EHR | |
| Clinical characteristics | Status of primary cancer, performance status, weight loss, comorbidities, laboratory values |
| Disease characteristics | Clinical stage, pathology/histology, grade, tumour size, tumour markers, regional lymph node metastasis |
| Treatment | Type: initial and adjuvant therapies, e.g. surgery, chemotherapy, radiation, hormonal, bone marrow / stem cell transplantDose: dates, schedule, administration methods and concurrent medications |
| Clinical endpoints | Changes in tumour size, change in patient symptoms, emergency room visits and / or hospitalizations, overall response to treatment, duration of response, toxicity evaluation, time to recurrence and progression, survival and second neoplasms |