Patient-Reported Experience of Diagnosis, Management, and Burden of Neuroendocrine Tumors

Wolin, Edward M.; Leyden, John; Goldstein, Grace; Kolarova, Teodora; Hollander, Ron; Warner, Richard R.P.

doi:10.1097/mpa.0000000000000818

Cited by 49 publications

(56 citation statements)

References 16 publications

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“…Delay in diagnosis is a particular issue in rare diseases because it results in delayed treatment, increased morbidity, and potentially life-threatening complications. 10,11 The cycling of patients through multiple providers and sometimes extensive and repetitive testing and the possibility of conflicting recommendations for treatment may worsen symptoms and increase the psychological and emotional burden for patients.…”

Section: Discussionmentioning

confidence: 99%

The burden of familial chylomicronemia syndrome: Results from the global IN-FOCUS study

Davidson

Stevenson

Hsieh

et al. 2018

Journal of Clinical Lipidology

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Section: Discussionmentioning

confidence: 99%

The burden of familial chylomicronemia syndrome: Results from the global IN-FOCUS study

Davidson

Stevenson

Hsieh

et al. 2018

Journal of Clinical Lipidology

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“…Gastroenteropancreatic neuroendocrine tumor (GEP‐NET) is a relatively rare and heterogeneous group of neoplasms . Advanced disease cannot be cured and it is a lethal condition associated with impaired quality of life . Disease stage as well as tumor location and grade provide prognostic information and are major determinants in the therapeutic algorithm .…”

Section: Introductionmentioning

confidence: 99%

Value of Tumor Growth Rate (TGR) as an Early Biomarker Predictor of Patients’ Outcome in Neuroendocrine Tumors (NET)—The GREPONET Study

et al. 2019

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Introduction Tumor growth rate (TGR; percent size change per month [%/m]) is postulated to be an early radiological biomarker to overcome limitations of RECIST. This study aimed to assess the impact of TGR in neuroendocrine tumors (NETs) and potential clinical and therapeutic applications. Materials and Methods Patients (pts) with advanced grade (G) 1/2 NETs from the pancreas or small bowel initiating systemic treatment (ST) or watch and wait (WW) were eligible. Baseline and follow‐up scans were retrospectively reviewed to calculate TGR at pretreatment (TGR0), first follow‐up (TGRfirst), and 3(±1) months of study entry (TGR3m). Results Out of 905 pts screened, 222 were eligible. Best TGRfirst (222 pts) cutoff was 0.8 (area under the curve, 0.74). When applied to TGR3m (103 pts), pts with TGR3m <0.8 (66.9%) versus TGR3m ≥ 0.8 (33.1%) had longer median progression‐free survival (PFS; 26.3 m; 95% confidence interval [CI] 19.5–32.4 vs. 9.3 m; 95% CI, 6.1–22.9) and lower progression rate at 12 months (7.3% vs. 56.8%; p = .001). WW (vs. ST) and TGR3m ≥ 0.8 (hazard ratio [HR], 3.75; 95% CI, 2.21–6.34; p < .001) were retained as factors associated with a shorter PFS in multivariable Cox regression. TGR3m (HR, 3.62; 95% CI, 1.97–6.64; p < .001) was also an independent factor related to shorter PFS when analysis was limited to pts with stable disease (81 pts). Out of the 60 pts with TGR0 data available, 60% of pts had TGR0 < 4%/month. TGR0 ≥ 4 %/month (HR, 2.22; 95% CI, 1.15–4.31; p = .018) was also an independent factor related to shorter PFS. Conclusion TGR is an early radiological biomarker able to predict PFS and to identify patients with advanced NETs who may require closer radiological follow‐up. Implications for Practice Tumor growth rate at 3 months (TGR3m) is an early radiological biomarker able to predict progression‐free survival and to identify patients with advanced neuroendocrine tumors who may require closer radiological follow‐up. It is feasible to calculate TGR3m in clinical practice and it could be a useful tool for guiding patient management. This biomarker could also be implemented in future clinical trials to assess response to therapy.

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“…To date, there are limited data on patients' unmet needs regarding the provision of NET information at diagnosis. A survey of 758 patients in the United States reported that 57% found answers to their NET‐related questions, yet only 45% were given sufficient information after diagnosis and 58% would have liked better direction in obtaining information . Other surveys also found that patients struggle to source relevant information .…”

Section: Discussionmentioning

confidence: 99%

“…A survey of 758 patients in the United States reported that 57% found answers to their NET-related questions, yet only 45% were given sufficient information after diagnosis and 58% would have liked better direction in obtaining information. 14 Other surveys also found that patients struggle to source relevant information. 15,16 This finding is reflected in our survey where many patients reported using the internet and patient associations to obtain information on NETs.…”

Section: Discussionmentioning

confidence: 99%

Unmet needs in the international neuroendocrine tumor (NET) community: Assessment of major gaps from the perspective of patients, patient advocates and NET health care professionals

Leyden¹,

Kolarova²,

Bouvier³

et al. 2019

Intl Journal of Cancer

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Due to the increasing incidence and prevalence of neuroendocrine tumors (NETs), there is a need to assess any gaps in awareness and care. A survey was undertaken in 2017 to identify perceived unmet needs from the perspectives of patients/families, patient advocates and health care professionals (HCPs). The survey consisted of 33–37 questions (depending on type of respondent) across four areas: information, care, treatments and research. In total, 443 participants from 26 countries responded: 338 patients/families, 35 advocates and 70 HCPs. Perceived unmet needs regarding provision of information at diagnosis differed between groups. While 59% of HCPs believed they provided sufficient information, informational needs were mostly/fully met for only 30% of patients and 18% of advocates. Additionally, 91% of patients and 97% of advocates felt that patients had to search for information themselves. Availability of Gallium‐68‐Dotatate PET/CT scan was limited for the majority of patients (patients: 73%; advocates: 85%; HCP: 86%), as was access to treatments, particularly peptide receptor radionuclide therapy (patients: 42%; advocates: 95%; HCPs: 77%). All groups felt that standards of care, including psychological needs and diagnosis of mental health, were not fully met. Although about two‐thirds of patients were managed by a multidisciplinary team, 14% of patients reportedly did not have enough contact. All groups supported more patient involvement in research; patients and advocates prioritized improvement in diagnosis and HCPs focused on clinical trials. This survey revealed significant unmet needs but differing perceptions regarding these among the groups. There is a need for investigation and collaboration to improve standards of care for NET patients.

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Patient-Reported Experience of Diagnosis, Management, and Burden of Neuroendocrine Tumors

Abstract: Supplemental digital content is available in the text.

Cited by 49 publications

References 16 publications

The burden of familial chylomicronemia syndrome: Results from the global IN-FOCUS study

The burden of familial chylomicronemia syndrome: Results from the global IN-FOCUS study

Value of Tumor Growth Rate (TGR) as an Early Biomarker Predictor of Patients’ Outcome in Neuroendocrine Tumors (NET)—The GREPONET Study

Unmet needs in the international neuroendocrine tumor (NET) community: Assessment of major gaps from the perspective of patients, patient advocates and NET health care professionals

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