Aim
Patients with neuroendocrine tumours (NET) are at risk of malnutrition, malabsorption and dietary change, but existing validated nutrition screening tools are not designed to capture complex NET symptoms and nutrition issues. This study aimed to develop a novel nutrition risk screening tool to improve early identification of patients with NETs requiring nutrition intervention.
Methods
Virtual focus groups and a two-round, online modified Delphi survey, involving international multidisciplinary NET health professionals (HP), informed the tool content and structure. The Delphi survey established consensus on the importance, wording and response options for proposed tool items. Acceptance criteria for inclusion of items between rounds was set at 75% (of rating > 7 on the 9-point Likert scales). Patients with NETs attending clinics at an ENETS Centre of Excellence in Melbourne were recruited to test the tool utility against key domains (ease of use, format, acceptability), assessed using a 5-item survey (with 7-point Likert scales), and test-retest study of item reliability.
Results
Twenty-two multidisciplinary HPs, from 5 countries/regions, participated in focus groups developing essential content for the initial 7-item tool (NET-NS). In Delphi round one, 46 HPs (including Medical Oncologist n=14, Surgeon n=8, Nurse n=7, Dietitian n=6) from across 6 countries/regions (Aus=21, Canada=6, Europe=11, NZ=5, US=3) revised the tool. After round one, all questions were retained (100% rated >4, 60% rated >7) with wording changes. Twenty-four (52%) participants completed Delphi round two, after which 6/7 questions (relating to NET-symptoms and diet change) met acceptance criteria, resulting in a 6-item tool. Consumer testing results were positive, with mean survey responses of 6.3-6.9 (SD 0.3-0.7, n=15), and 9/11 sub-items scoring >0.833 on the test-retest study (n=24).
Conclusions
Using NET HP expertise and consumer-informed utility testing, a novel NET-nutrition risk screening tool has been developed. Planning for a multi-site validation study and international implementation is underway.