Characteristics and information needs of patients with cancer contacting My Cancer Navigator (MCN): A personalized information service of the Anticancer Fund (ACF).

Abstract

e13521 Background: The ACF is an independent private research foundation, based in Belgium and active internationally. Since its inception in 2013, patients and their relatives spontaneously contact the Fund to request information on treatment options including clinical trials. MCN consists of a dedicated team of physicians and scientists, which provides patients and healthcare professionals with free, evidence-based, unbiased, and personalised information to support shared decision-making. All patients receive a summary report, which is discussed in a (video)call with one of our physicians. The objective of the current study was to analyse the characteristics and information requests of people contacting us in 2020-2021 in order to better understand their needs. Methods: For every information request through MCN, the patient agreed to the collection of anonymised data such as sex, age, geographic location and tumor type. We tracked questions asked in 8 categories, tracking a category only once per patient and including only those requiring a literature search. Only descriptive statistics were applied. Results: In 2020-2021, we received information requests for 511 unique patients: 483 adults (95%) and 28 children (5%). In 46% of the cases the patient established contact; for 51% it was a relative or friend, and in 3% the physician. 377 patients (73%) were from Europe, of whom 222 (43%) from Belgium, 56 (11%) from the UK and 23 (5%) from the Netherlands. 109 patients (21%) came from all other continents – of those, 60 (12%) were from the USA. Tumor diagnoses included: gastro-intestinal (114, 22%), breast (110, 22%), central nervous system (77, 15%), gynecological (36, 7%), hematologic (35, 7%), genito-urinary (29, 6%), with sarcomas, lung, head and neck, skin and unknown cancers making up the remainder. Most patients had more than 1 question requiring research, resulting in a total of 880 questions. The Table shows the number and percentage for each category. Conclusions: Within this population, evidence-based information on treatment options, clinical trials, complementary treatments and repurposed drugs were key information needs. Healthcare institutions may lack resources to address all information needs, and My Cancer Navigator may contribute to closing that gap and support patients and healthcare providers. Although the service seems to be well perceived, we are now developing a method to formally assess satisfaction with and impact of our service.[Table: see text]