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Treatment and Care

56.7% of patients do not have a NET specialist involved in their initial diagnosis and in 11% of patients, a NET specialist was not involved in the treatment.

There is a clear lack of awareness about the availability of treatments, for example, 32% of HCPs stated that transarterial chemoembolisation (TACE) was not available in their country and 21% of the neuroendocrine cancer patients were not aware of its availability in their country. Similar results were found for intravenous chemotherapy or endoscopic ablation. There is also a large difference in the availability of treatments in advanced economies compared to emerging and developing economies. For example, peptide receptor radionuclide therapy is available for 57% of patients in advanced economies but only 33% of those living in emerging and developing economies.

CALL-TO-ACTION: Provide patient-focused evidence to policy makers

Considering the alarming evidence encountered at this stage of the patient pathway, we want to remark on the importance of providing patient-focused evidence to policy makers (see page 17 and 18). Ensuring that the patient voice is heard and captured is of priority. To ensure that the patient perspective is being captured, we need a two-way dialogue and agree on actions forward with all relevant stakeholders.

A key way to address the issue is to divide into the following 3 stages:

Examples of issues to be addressed with policy makers:

  • Access to specialists;
  • Knowledge on treating neuroendocrine cancers;
  • Access to appropriate diagnostics, imaging and monitoring;
  • Access to appropriate procedures and treatments.

Important concepts involved:

Combining the Patient Experience Data (PED) with Patient Engagement (PE) is fundamental to ensure that the patient is the central pillar when designing, generating, collecting and analysing patient experience data.

Patient Experience Data (PED)

  • Data that is collected by any persons (including patients, family members and caregivers of patients, patient advocacy organizations, disease research foundations, researchers, and drug manufacturers);
  • Data that is intended to provide information about patients’ experiences with a disease or condition, including: the impact (including physical and psychosocial impacts) of such disease or condition, or a related therapy or clinical investigation on patients’ lives; and patient preferences with respect to treatment of such disease or condition.

Patient Engagement (PE)

The term refers to the active and meaningful involvement of patients in developing medicines and healthcare management.

CALL-TO-ACTION: Use The Global PED Navigator

This navigator from the PFMD organisation provides an extremely useful tool to navigate through this landscape.

You can download and use each of these tools separately or combined.

For example, for the first tool, to identify what outcomes matter most to patients & families, the global patient experience data navigator provides a matrix of the areas of impact and the corresponding specific impacts versus the prioritisation approaches like having individual interviews or survey, online bulletin boards etc… So, this tool provides you a first stepping stone onto how to approach the different stakeholders for the areas you as a patient organisation want to tackle.

Evidence regarding patient preference can be very useful when engaging with pharmaceutical companies and discussing clinical trial plans so that patients’ priorities and preferences are met by their treatments. Furthermore, the data can be used to inform HTA processes to highlight the need for specific treatments or care tools for patients.

Generating evidence in neuroendocrine cancer due to the nature of the neuroendocrine system, the data will vary greatly between neuroendocrine cancer subtypes. Hence, to have robust data, patient preference and treatment adherence should be analysed in correspondence with the neuroendocrine cancer subtypes and grades.

The reality of adherence to a certain medication can depend on different reasons, attitudes and expectations toward the medication. Evidence on medication adherence can support HCPs to identify these expectations and attitudes and address and discuss them with their patients in order to improve the adherence.

Here is one example of a patient preference studies carried out by Myeloma Patients Europe  and one adherence to medication study carried out in Chronic Myeloid Leukemia (CML).