Patient-reported outcome after treatment for definite Lyme neuroborreliosis

Objective: To chart patient-reported outcome measures (PROMs) in Norwegian patients treated for definite neuroborreliosis (NB).

Material and methods: Adult patients treated for definite NB 1-10 years earlier supplied demographics, symptoms and treatment during NB, and answered validated questionnaires; Fatigue Severity Scale (FSS), Hospital Anxiety and Depression Scale (HADS), health-related quality of life questionnaire (RAND-36), and Patient Health Questionnaire (PHQ-15).

Results: A higher proportion of NB-treated persons reported severe fatigue, defined as FSS score ≥ 5, than in Norwegian normative data, but when removing persons with confounding fatigue associated comorbidities (n = 69) from the analyses, there was no difference between groups. Physical health-related quality of life (RAND-36 PCS), mean FSS score, proportions of persons reporting moderate or severe somatic symptom burden (PHQ-15 score ≥ 10), anxiety (HADS-A ≥ 8), or depression (HADS-D ≥ 8) did not differ between NB-treated persons and reference scores. Mental health-related quality of life (RAND-36 MCS) was poorer than in normative data (47.1 vs. 53.3), but associated with anxiety, depression and current moderate or severe somatic symptom burden, and not with NB characteristics.

Conclusions: Results on validated PROM questionnaires measuring fatigue, anxiety, depression, self-reported somatic symptom burden, and physical health-related quality did not differ between persons treated for definite NB 1-10 years earlier and reference scores. NB-treated persons tended to report a slightly poorer mental health-related quality of life than found in normative data, but when adjusting for confounders the causative connection is questionable. Overall, the long-term prognosis of definite NB seems to be good.