Improving time to diagnosis for neuroendocrine tumors
This study investigates the prolonged diagnostic delays in neuroendocrine tumor (NET) patients, revealing that physician-dependent factors—particularly misdiagnoses—are key contributors.
Background
Neuroendocrine Tumors (NETs) represent a spectrum of rare, highly heterogenous, slow-growing tumors that arise from neuroendocrine cells in a multitude of organs [1]–[3]. The most common sites for NETs are the gastrointestinal system and the lungs, accounting for 65% and 25% of all cases respectively [4]. However, NETs are not limited to these two regions, they can also arise in areas such as the pituitary, thyroid, pancreas, ovaries, and adrenal glands [5]–[7]. NETs usually occur in late adulthood but can occur in children and adolescents as well, where aggressive forms lead to both higher morbidity and mortality [4], [8]. Previously considered rare tumours, recent statistics paint a different picture: Prevalence and incidence of NETs are on the rise, with a doubling of the incidence in Canada between 1994 and 2009 [5], [9]. The current incidence rate in Canada is 5.86 per 100,000 [9]. Moreover, this increase in incidence of NETs has been reported worldwide [5], [9], [10], with a seemingly upward trend [9], [11], [12]. Today, due to prolonged survival of patients with active disease, there are currently more people living with NETs than there are people living with some non-neuroendocrine tumours such as esophageal, gastric and pancreatic cancer [9], [10], [13]. One of the biggest problems affecting NET patients is the frequent delay in reaching a diagnosis. In fact, the delay is often substantial: A recent international survey has shown that the mean reported delay time from first symptom to confirmed diagnosis was 52 months – or just over 4 years – but can be as long as 9 years [17], [18]. This has severe consequences, leading to increased suffering for patients, and putting a pressure on our health care system [17]. The aim of this project is to determine why these long delays occur in the diagnosis of Neuroendocrine tumours by determining where in their diagnostic journeys do patients face the delay and identifying the factors that lead to diagnostic delays. We confirmed that majority of the patients experience a delay in diagnosis, some more than 7 years. This delay was in large part due to the time to suspicion, meaning patients were tested and treated for other disorders while NETs were not suspected. Interestingly symptom profile and severity did not affect time to diagnosis. Thus it seems that delay in diagnosis is likely a result of physician dependent factors.
The majority of participants diagnosed in a timely manner received no misdiagnoses, while those with long diagnostic journeys received several misdiagnoses including gastroenteropancreatic, respiratory or gynecological in nature (Figure 9). In fact, among the participants who reported a delay in diagnosis, the most prevalent misdiagnoses are gastroenteropancreatic, respiratory and psychiatric. Most notable here is the high frequency of reported psychiatric misdiagnoses. There are multiple explanations for that observation. It could be the case that receiving a psychiatric misdiagnosis is associated with a subsequent delay in diagnosis. An equally plausible explanation is that the distress experienced during a lengthy diagnostic journey is enough to affect the mental health of patients. The experiences shared by participants who received a psychiatric misdiagnosis hints to the former explanation. Some participants who indicated a psychiatric misdiagnosis provided text responses throughout the survey that highlight their experiences. These quotes and associated contextual information are provided in Table 6. Interestingly, it seems that female patients experienced psychiatric misdiagnosis more often than male patients (Table 7). While increasing awareness of NETs is recommended across all clinical disciplines, it is conceivable that special focus should be given to psychiatrists for the reasons described above. One must also consider the fact that NETs have been reported to have both neurologic [36] and psychiatric effects [37]–[41]. This could magnify the probability of symptom misattribution. Psychiatrists should be made aware about NETs and their manifestations so that they can re-refer a NET patient to the appropriate specialist, putting the patient back on the right diagnostic track.
Project team
- Majd Ghadban
TRP supervisors
Project advisory committee
- Dr. Jackie Herman
- Dr. Radhika Yelamanchili
- Dr. Greg Fairn
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