Medical and Health Sciences, Health Sciences, Health Care Service and Management, Health Policy and Services and Health Economy, Medicin och hälsovetenskap, Hälsovetenskap, Hälso- och sjukvårdsorganisation, hälsopolitik och hälsoekonomi, Clinical Medicine, Psychiatry, Klinisk medicin, Psykiatri

Background Impulsive-compulsive disorders (ICDs) are commonly acknowledged as side effects of dopaminergic therapy in Parkinson’s disease (PD). While many large-scale studies have focused on prevalences and high-risk treatments, little is known about practical management of ICDs in clinical care and patients’ experiences. Objective To investigate how ICDs are recognized in clinical PD care, clinical features of patients with ICDs, and how patients are impacted by their ICD. Methods Questionnaires were sent to all patients who reported ICD symptoms in the Swedish quality register for PD in Skåne County (n = 170) and patients’ medical records were screened for mention of ICDs. Core subjects were communication between clinician and patient, course and management of ICDs, and impact on different life domains. Results Despite sufficient awareness of the ICD risk during PD treatment, there was limited communication between clinical care staff and patients regarding ICDs. Only 49% of patients had reported their ICD as part of clinical care, and only 14% had been asked about it. Additionally, collaboration with psychiatry was rare (12%). ICD severity increased over time with ongoing PD treatment, and most patients reported a mild to moderate impact of their ICD on close relationships, family, mental and physical health. Conclusions This study identified insufficient communication about ICDs as part of clinical care in PD and a very limited involvement of mental health services. Thus, to improve prevention and treatment, ICDs should be recognized, monitored and treated more systematically in routine clinical care, and collaboration with mental health services should be increased.