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

Abstract

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.

The Role of Patient Support Groups in Neuroendocrine Neoplasms

“…Equitable access to innovative diagnostic and treatment tools in NENs is a significant global challenge, and a focused effort should be directed at advocating to include NENs in national cancer plans. INCA strongly believes that public funding should be provided to the advocacy community to support their vital work in bridging the gap in provision of information [ 19 ••].…”

“…Healthcare systems should also aim to create more specialist centers with a focus on improving NEN patient outcomes. [ 19 ••] Almost a third (30%) of NEN patients had to travel more than 300 km/186 miles for treatment or consultation with a NET specialist, while 34% of patients did not have access to an MDT and those that did may be in contact with them less than once per year (14%). [ 22 ••] It is a must that patients with rare and less common cancers/diseases are treated in centers of expertise able to provide expert diagnosis, treatment, and continuity of care, including psychological and transition support.…”

“…There is an urgent need to increase awareness and specialized education in NENs among all relevant HCPs, as this may facilitate faster detection, diagnosis, and referral for patients [ 19 ••]. Data from the Survey of Challenges in Access to Diagnostics and Treatments for Neuroendocrine Tumor (NET) Patients (SCAN) show that almost half (46% [1077/2359]) of patients had stage IV NENs.…”

“…The Unmet Needs Survey article identified many action points, with the following regarded as requiring urgent attention: Improve utilization of existing resources, such as providing written information to patients at relevant stages of their pathway [ 19 ••]. While HCPs felt they provided patients with sufficient information (59%), informational needs were mostly or fully met for only 30% of patients and 18% of advocates [ 19 ••]. …”

Evaluating cost-effectiveness in the management of neuroendocrine neoplasms

“…There is a lack of evidence on the best way to investigate and diagnose a NEN in the face of innovative, costly investigation and treatment. Therapy for NEN is reported by patients to vary internationally, and there has been criticism about disparities in access to treatments across countries [35]. A multidisciplinary team approach is important for the optimal treatment of patients with GEP NETs [30,59].…”