Aims: Neuroendocrine tumors (NETs) are a prototype for illnesses existing at the interface of medicine and psychiatry. NETs often secrete vasoactive substances, including serotonin, which can affect ...mood and cognition, and as slow growing tumors they can impact psychosocial functioning for decades, sometimes well after the rallying support of caregivers has dwindled. Not surprisingly, an association between NETs and neuropsychological symptoms has been suggested, but objective data is limited. We aimed to assess the burden of neuropsychological symptoms in NETs using validated patient reported outcomes (PROs). Methods: Adult patients with NETs followed at a high volume specialized multidisciplinary clinic were assessed prospectively for mood (BDI-II), cognition (FACT-Cog) and health-related quality of life (EORTC-GEPNET21), as well as patient preference for psychosocial support. Results will be presented from an exploratory preliminary analysis conducted after 2 months. Results: Of 80 patients, 27.5% had BP and 65.2% GEP primary NETs. Metastases were present in 65% and 30% were hormonally active (elevated 24-hour urinary 5-H1AA). No patients had an established cognitive or psychiatric diagnosis. Median time from NETs diagnosis to PROs measure was 82 (IQRL: 64.5-125) months. Using the BDI-II, 16.3% of patients presented mood disturbances, 17.5% signs at or above the level of clinical borderline depression, and 8.8% moderate to severe depression. FACT-Cog assessment revealed moderate perceived cognitive impairment (median 61, IQR: 50-68, possible range 0 to 72) and considerable reduction in perceived cognitive ability (median 5, IQR: 2-10, possible score 0 to 28). On the EORTC-GEPNET21, social functioning was the most impacted domain (median 16.7, IQRL 8.3-33.3). Gastro-intestinal, endocrine and treatment related symptoms were mildly impacted. Patients preference (very likely/likely to use) for psycho-social support was: social work 23.8%, psychology services 32.6%, psychiatry services 36.2%, and patient support group 36.3%. Conclusion: Using validated PROs. one out of 5 patients presented signs of clinical depression and perceived cognitive impairment during the maintenance phase of care. While physical symptoms appeared well-controlled, social functioning was impacted. These results provide insight into the need to routinely screen NETs during follow-up in order to offer support and improve patient-centered longitudinal care.
Abstract
Introduction
Cancer symptom screening has the potential to improve cancer outcomes, including reducing symptom burden among patients with major mental illness (MMI). We determined rates of ...symptom screening with the Edmonton Symptom Assessment System (ESAS‐r) and risk of severe symptoms in cancer patients with MMI.
Methods
This retrospective cohort study used linked administrative health databases of adults diagnosed with cancer between 2007 and 2020. An MMI was measured in the 5 years prior to cancer diagnosis and categorized as inpatient, outpatient, or no MMI. Outcomes were defined as time to first ESAS‐r screening and time to first moderate‐to‐severe symptom score. Cause‐specific and Fine and Gray competing events models were used for both outcomes, controlling for age, sex, rural residence, year of diagnosis and cancer site.
Results
Of 389,870 cancer patients, 4049 (1.0%) had an inpatient MMI and 9775 (2.5%) had an outpatient MMI. Individuals with inpatient MMI were least likely to complete an ESAS‐r (67.5%) compared to those with outpatient MMI (72.3%) and without MMI (74.8%). Compared to those without MMI, individuals with an inpatient or outpatient MMI had a lower incidence of symptom screening records after accounting for the competing risk of death (subdistribution Hazard Ratio 0.77 (95% CI 0.74–0.80) and 0.88 (95% CI 0.86–0.90) respectively). Individuals with inpatient and outpatient MMI status consistently had a significantly higher risk of reporting high symptom scores across all symptoms.
Conclusions
Understanding the disparity in ESAS‐r screening and management for cancer patients with MMI is a vital step toward providing equitable cancer care.
Background
One of the most common psychological morbidities of cancer is depression. Routine depression symptoms screening (DSS) is recommended, but its ability to lead to psychosocial interventions ...in clinical practice is limited. We examined the use of and factors associated with psychosocial interventions for positive DSS following cancer diagnosis.
Materials and Methods
We conducted a population‐based cohort study of patients with diagnoses from 2010 to 2017 who reported ≥1 patient‐reported Edmonton Symptom Assessment System (ESAS) score. Positive DSS was defined as ESAS ≥2 out of 10 for the depression item within 6 months of diagnosis. Outcomes were psychosocial interventions around the time of positive DSS: palliative care assessment, psychiatry/psychology assessment, social work referral, and antidepressant therapy (in patients ≥65 years of age with universal drug coverage). We examined reduction in depression symptom score (≥1 point) following intervention. Modified Poisson regression examined factors associated with interventions.
Results
Of 142,270 patients, 65,424 (46.0%) reported positive DSS at a median of 66 days (interquartile range: 34–105) after diagnosis. Of those with depression symptoms, 17.1% received palliative assessment, 1.7% psychiatry/psychology assessment, 8.4% social work referral, and 4.3% antidepressant therapy. Depression symptom score decreased in 67.2% who received palliative assessment, 63.7% with psychiatry/psychology assessment, 67.3% with social work referral, and 71.4% with antidepressant therapy. On multivariable analysis, patients with older age, rural residence, lowest income quintile, and genitourinary or oropharyngeal cancer were more likely to not receive intervention other than palliative care.
Conclusion
The proportion of patients reporting positive DSS after cancer diagnosis receiving psychosocial intervention is low. We identified patients vulnerable to not receiving interventions, who may benefit from additional support. These data represent a call to action to modify practice and optimize the usefulness of systematic symptom screening.
Implications for Practice
Patient‐reported depression symptoms screening should be followed by targeted interventions to improve symptoms and patient‐centered management.
This population‐based study examined psycho‐social interventions for patient‐reported depression symptoms after a new diagnosis of cancer and assessed changes in depression scores with intervention. The results reported here are a call to action to modify practice for symptom screening and intervention in supportive care for cancer patients.
Summary Wernicke-Korsakoff syndrome in patients with cancer is understudied. Much of what is known—that significant under-recognition and delays in treatment exist—comes from studies of alcohol ...misuse disorders or non-alcohol-related Wernicke-Korsakoff syndrome in patients. We investigated the frequency and associated features of cancer-related Wernicke-Korsakoff syndrome in the published literature. We included 90 articles reporting on 129 patients. Only 38 (30%) of 128 patients with data available exhibited the entire triad of classic features of Wernicke-Korsakoff syndrome: confusion, ataxia, and ophthalmoplegia or nystagmus. Diagnosis during life was missed altogether in 22 (17%) of 128 patients. The operational diagnostic criteria (at least two of the following: nutritional deficiency, ocular signs, cerebellar signs, and either altered mental status or mild memory impairment), which are considered more reliable than the classical triad, were used in only nine (7%) cases, yet 120 (94%) met the operational criteria for diagnosis at the time of presentation when applied retroactively. Complete recovery was reported in only 47 (36%) cases. Given that oncologists or haematologists accounted for only 17 (19%) first authors among the articles included, it is important that oncologists are aware of the risk factors for cancer-related Wernicke-Korsakoff syndrome, and that they are vigilant about diagnosing and treating the disease especially in the absence of alcohol misuse disorders.
Background
How to best support patients with neuroendocrine tumors (NETs) remains unclear. Improving quality of care requires an understanding of symptom trajectories. Objective validated assessments ...of symptoms burden over the course of disease are lacking. This study examined patterns and risk factors of symptom burden in NETs, using patient‐reported outcomes.
Subjects, Materials, and Methods
A retrospective, population‐based, observational cohort study of patients with NETs diagnosed from 2004 to 2015, who survived at least 1 year, was conducted. Prospectively collected patient‐reported Edmonton Symptom Assessment System scores were linked to provincial administrative health data sets. Moderate‐to‐severe symptom scores were presented graphically for both the 1st year and 5 years following diagnosis. Multivariable Poisson regression identified factors associated with record of moderate‐to‐severe symptom scores during the 1st year after diagnosis.
Results
Among 2,721 included patients, 7,719 symptom assessments were recorded over 5 years following diagnosis. Moderate‐to‐severe scores were most frequent for tiredness (40%–51%), well‐being (37%–49%), and anxiety (30%–40%). The proportion of moderate‐to‐severe symptoms was stable over time. Proportion of moderate‐to‐severe anxiety decreased by 10% within 6 months of diagnosis, followed by stability thereafter. Changes were below 5% for other symptoms. Similar patterns were observed for the 1st year after diagnosis. Primary tumor site, metastatic disease, younger age, higher comorbidity burden, lower socioeconomic status, and receipt of therapy within 30 days of assessment were independently associated with higher risk of elevated symptom burden.
Conclusion
Patients with NETs have a high prevalence of moderate‐to‐severe patient‐reported symptoms, with little change over time. Patients remain at risk of prolonged symptom burden following diagnosis, highlighting potential unmet needs. Combined with identified patient and disease factors associated with moderate‐to‐severe symptom scores, this information is important to support symptom management strategies to improve patient‐centered care.
Implications for Practice
This study used population‐level, prospectively collected, validated, patient‐reported outcome measures to appraise the symptoms burden and trajectory of patients with neuroendocrine tumors (NETs) after diagnosis. It is the largest and most detailed analysis of patient‐reported symptoms for NETs. Patients with NETs present a high burden of symptoms at diagnosis that persists up to 5 years later, highlighting unmet needs. Early and comprehensive symptom screening and management programs are needed. This information should serve to devise pathways and policies to better support patients, evaluate supportive interventions, and assess the effectiveness of symptom management at the provider, institutional, and system levels.
The best support for patients with neuroendocrine tumors (NETs) is unclear. This article reports patterns and risk factors for symptom burden in NETs, using patient‐reported outcomes based on Edmonton Symptom Assessment System scores.
Background Wernicke-Korsakoff syndrome (WKS) is a well described syndrome of neurological and cognitive problems that comprises both Wernicke's encephalopathy (WE) and Korsakoff syndrome (KS). WE is ...an acute neuropsychiatric disorder caused by thiamine deficiency. KS is a chronic consequence of thiamine deficiency with prominent impairment in memory formation. Method The authors review the literature on the pathophysiology, presentation, and treatment of WKS, focusing on the acute identification and treatment of WE. Results Most cases of WE are missed by clinicians, likely because patients do not present with the classic signs associated with the condition. Attaining high serum levels of thiamine during treatment may be important to restore cognitive function as quickly as possible, though the exact dosing and route needed for effective treatment is unknown. Data indicates that the administration of intravenous (IV) thiamine has little risk. Conclusion In order to prevent this potentially devastating disease, physicians should have a high index of suspicion for WKS and dose thiamine accordingly.
Background
Given a slow course of disease, end-of-life issues are understudied in neuroendocrine tumors (NETs). To date, there are no data regarding symptoms at the end of life. This study examined ...symptom trajectories and factors associated with high symptom burden in NETs at the end of life.
Methods
We conducted a retrospective cohort study of NET patients diagnosed from 2004 to 2015 and who died between 2007 and 2016, in Ontario, Canada. Prospectively collected patient-reported Edmonton Symptom Assessment System scores were linked to administrative healthcare datasets. Moderate-to-severe symptom scores (≥ 4 out of 10) in the 6 months before death were analyzed, with multivariable modified Poisson regression identifying factors associated with moderate-to-severe symptoms scores.
Results
Among 677 NET decedents, 2579 symptom assessments were recorded. Overall, moderate-to-severe scores were most common for tiredness (86%), wellbeing (81%), lack of appetite (75%), and drowsiness (68%), with these proportions increasing as death approached. For symptoms of lack of appetite, drowsiness, and shortness of breath, the increase was steepest in the 8 weeks before death. On multivariable analyses, the risk of moderate-to-severe symptoms was significantly higher in the last 2 months before death and for patients with shorter survival (< 6 months). Women had higher risks of anxiety, nausea, and pain.
Conclusion
A high prevalence of moderate-to-severe symptoms was observed for NETs at the end of life, not previously described. The proportion of moderate-to-severe symptoms increases steeply as death nears, highlighting an opportunity for improved management. Combined with identified factors associated with moderate-to-severe symptoms, this information is important to improve patient-centred and personalized supportive care for NETs at the end of life.
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