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.