Introducing needs‐based epilepsy follow‐up: Patient satisfaction compared to standard of care follow‐up

Background People with epilepsy have diverse healthcare needs, but limited resources make tailored management challenging. To allocate resources where they are most urgently required, we developed an openly available needs‐based follow‐up model. This system adjusts follow‐up frequency based on patients' symptoms, side effects, and other information reported digitally. Our study aimed to compare patient satisfaction with the needs‐based model versus standard of care (SOC). Method We sent a digital survey to all epilepsy patients at three different Norwegian hospitals. Satisfaction was rated from one (“Not at all”) to five (“To a very great extent”). Patients were categorized into three groups: (1) active needs‐based follow‐up, (2) selected for needs‐based follow‐up, but no active participation (offered needs‐based follow‐up but declined or did not fill in any forms yet), and (3) SOC follow‐up. We used Pearson's chi‐squared test to compare the three groups, with p ‐values < .05 as significant. Results Of 2190 patients, 748 (34%) responded. Group 1 ( n = 170) reported better satisfaction than Group 3 ( n = 500) in all areas including meeting care needs ( p < .001), communication and trust (both p < .001), information needs being met ( p < .001), and personalized treatment ( p < .001). Compared to Group 2 ( n = 78), Group 1 also showed higher satisfaction, particularly with diagnostic information, involvement in follow‐up, and accessibility of healthcare providers. Conclusion Patients with needs‐based follow‐up were more satisfied with their epilepsy care than those with SOC follow‐up. Results were consistent also when accounting for potential selection bias to the follow‐up model.