Data collection
The registry data from DCCR were supplemented with data from medical
records from all pediatric departments in Denmark. To assess the impact
of a misdiagnosis on patient outcomes, we identified patients with a
prior musculoskeletal misdiagnosis and compared their characteristics to
the remaining patients without any musculoskeletal misdiagnosis. The
following data were collected: demographic information such as age and
gender, the clinical presentation (symptom, objective signs), the
diagnostic intervals, tumor type and grade, metastases, treatment,
comorbidities. We also collected data of cause and date of death, last
day of follow-up, and presence of sequelae from tumor or treatment.
Sequelae was categorized according to organ and severity, severe
sequelae included plegia, incontinens or neurocognitive defects.
The musculoskeletal diagnosis was recorded as a misdiagnosis if the
symptoms were later found to be due to the tumor. It was recorded as
musculoskeletal comorbidity if it was a coexisting musculoskeletal
diagnosis and the symptoms were not later explained by the tumor. The
diagnoses included were from hospitalizations, emergency room, and
outpatient visits but not from general practitioners.
We used a standardized definition of the diagnostic intervals, including
the period from the first symptom until the start of treatment. Further,
three additional time intervals were added: 1) a pre-diagnostic
symptomatic interval, i.e., the time from the first symptom until
diagnosis. 2) a first hospital doctor interval, i.e., the time from the
first hospital contact until a specialist was involved; and 3) a
specialist interval, i.e., the time from a specialist was involved until
the final diagnosis was made. The specialist was defined as either a
pediatric oncologist or neurosurgeon, (Fig. 1).