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CONJ • 14/4/04 RCSIO • 14/4/04
By Jeff A. Sloan, Shannon Scott-Findlay, Anne Nemecek,
Paul Blood, Cheryl Trylinski, Heather Whittaker,
Samy El Sayed, Jennifer Clinch, and Kong Khoo
Abstract
This is the second in a series of articles from a line of research
whose intent was to construct a complete history of interactions with
the health care system. This paper provides details of the methods
developed to collect and collate the scattered information regarding
the event history (trajectory) that a cancer patient experiences in
traveling through the Manitoba health care system from one year
prior to diagnosis through to two years post-diagnosis. Survival data
were obtained through 1994. Basic population data obtained from
this work are also presented, including survival information through
to four years post-diagnosis. Issues regarding standardized data
recording and detail level of clinical events in the chart record are
discussed. This part of the research demonstrates that diverse data
sources in the health care system can be linked with a high degree of
accuracy and completeness of data.
“What happens when a person is diagnosed with cancer?” The first
paper in this series (Sloan et al., 2004) described the circumstances
under which this question arose and the difficulties encountered when
one tries to put together a framework to answer what, on the surface,
would seem to be a basic question. This paper summarizes the data
accumulation process and development of the basic methodology for
pulling together all available information to produce cancer patient
histories. Some of the basic findings that were derived from the
methodological processes will also be presented.
Manitoba is a province of 1.1 million people with a socio-
economic mix of ethnicity, income, age, and education broadly the
same as the Canadian population as a whole. The health care system
in Manitoba is administered on the same basis as other Canadian
provinces. All of the practising oncologists are located in the
provincial capital, Winnipeg, which has a population of 650,000
people. The majority of patients travel to Winnipeg for cancer
diagnosis and treatment. However, some chemotherapy treatment is
provided in rural cancer outreach centres by family physicians, under
the supervision of the oncologists.
Data sources
In 1990, the Manitoba Cancer Treatment and Research Foundation
(MCTRF) Cancer Registry registered 6,662 new cases of cancer in
Manitoba. Approximately 30% (2,000) of these cancer cases were
breast, colorectal, or lung disease. These three sites were chosen to
reflect a wide diversity of experience in disease trajectory. Breast
cancer typically involves good prognosis and lengthy survival. Lung
cancer most often presents with a short and acute symptomatic profile.
Colorectal cancer tends to be of intermediate disease intensity and
duration relative to the breast and lung cases. The term case refers to a
singular diagnosis of a primary cancer tumour. A particular patient
could have a number of malignancies and, therefore, generate a number
of cases (cancer diagnoses). In our final dataset, there are 2,015 cases
(malignancies) diagnosed in a population of 1,979 patients.
Study data were gathered from three sources: the MCTRF
computerized patient core database (MAXON), data available in the
MCTRF patient records, and the Manitoba Health physician/hospital
claims database. The flow chart in Figure One details the process of
data abstraction and compilation.
The MCTRF’s MAXON database provided detailed information
for each case within the study in four segments. The personal
identification section contains the demographic data such as age, sex,
residence, health numbers, vital status, and date of birth. The
Malignancy Abstract (MA) includes the date of cancer diagnosis,
histology and morphology of the tumour. The treatment information
(TR) section includes the method and date of treatment and health
care facility where treatment was performed. Finally, the record
location (RL) section designates the record as an MCTRF treatment
record (patient being treated at MCTRF) or a report (cancer
diagnosis) registered in the Cancer Registry. Each of the four
MAXON sources was kept as a separate file initially to maintain data
integrity (see Figure One).
Patient clinical charts contained important data not included in any
of the computerized databases and, in particular, disease staging
information. The complex process necessary to review the charts to
produce pathological TNM staging is the subject of the third article in
this series (Scott-Findlay et al., 2004). It was also necessary to
supplement the available information about treatments given with
further detail on follow-up visits and other contacts between the
patient and the MCTRF health care system.
Two separate databases were abstracted from the MCTRF patient
charts using Statistical Package for Social Sciences (SPSS-PC). One
Mapping the journey of cancer patients
through the health care system. Part 2:
Methodological approaches and basic findings
Jeff A. Sloan, PhD, at the time of the project was Biostatistician at
the Faculty of Nursing, University of Manitoba. He is currently
Lead Biostatistician at the Mayo Clinic in Rochester, MN.
Shannon Scott-Findlay, RN, PhD(c), at the time of the project was
Research Assistant/Nurse for Community Cancer Programs
Network (CCPN) at the Manitoba Cancer Treatment and
Research Foundation (MCTRF). She is currently a Doctoral
Candidate, Faculty of Nursing, University of Alberta, Edmonton,
AB. Anne Nemecek, RN, is the Previous Program Director of
Community Cancer Programs Network at MCTRF, Winnipeg, MB.
Paul Blood, MD, at the time of the project was Radiation
Oncologist at MCTRF. Currently, he is a Radiation Oncologist at
the B.C. Cancer Agency, Victoria, BC. Cheryl Trylinski, HRT, at
the time of the project was Data Analyst for the Community
Cancer Programs Network. She is currently an Outcomes
Associate with the Cross Cancer Institute, Edmonton, AB.
Heather Whittaker, HRA, at the time of the project was Director of
Records & Registry at MCTRF. Currently, she is Director of
Health Records & Privacy Officer, CancerCare Manitoba,
Winnipeg, MB. Samy El Sayed, MD, at the time of the project was
Radiation Oncologist at MCTRF and is currently a Radiation
Oncologist at Ottawa Regional Cancer Centre, Ottawa, ON.
Jennifer Clinch, BSc, MA, at the time of the project was Co-
Director, Research Analysis at the WHO Collaborating Centre for
Quality of Life in Cancer Care. Currently, she is a biostatistician
at the Clinical Epidemiology Unit, Ottawa Health Research
Institute. Kong Khoo, MD, at the time of the project was a Medical
Oncologist at MCTRF and is currently a Radiation Oncologist at
the Cancer Centre of the Southern Interior, Kelowna, BC.
doi:10.5737/1181912x144224227