“DBS means everything – for some time”. Patients’ Perspectives on Daily Life with Deep Brain Stimulation for Parkinson’s Disease

Background: Deep brain stimulation (DBS) is an established treatment for Parkinson’s disease. However, patients ́ own perceptions of the impact of DBS on their daily living is not fully explored. Objective: We aimed to collect and analyse patients’ narratives about their everyday experiences of being on chronic DBS. Methods: Semi-structured interviews with open-ended questions were conducted with 42 patients (11 women) who had been on DBS for a mean of three years. The questions were related to patients’ ordinary daily life and eventual changes, both negative and positive, brought about by DBS. The interviews were transcribed verbatim and analysed according to the difference and similarity technique in grounded theory. Results: From the patients’ narratives the core category ‘DBS means everything – for some time’ was established, and supported by the following categories: 1) Relief from invasive tremor. 2) A rescue from cramps and pain. 3) Easier movement swings and more predictable living space. 4) Hard, but compared to previous suffering, bearable adverse events. 5) Parkinson’s disease is progressing despite DBS. Conclusions: The analysis of the participants’ narratives shed light on patients’ unique perceptions and perspectives of the impact of DBS on their everyday lives. Patients with advanced PD highly appreciated the positive impact of DBS on their daily life even if this impact is limited in time. For the majority, the relief from the severe parkinsonian symptoms, especially tremor and painful cramps, outweighed the side effects of DBS. The study provided information not readily captured by pre-formulated questionnaires and scales.