The Experiences of Patients with Deep Brain Stimulation in Parkinson’s Disease: Challenges, Expectations, and Accomplishments

Abstract

<p><strong>Objectives. </strong>Deep brain stimulation (DBS) is a safe and effective alternative treatment of some movement disorders such as Parkinson's disease. Although DBS is an effective treatment for Parkinson's disease, because of the necessity of surgical intervention, follow-up and the effects on symptoms, this study was carried out to determine the challenges, expectations and accomplishments of patients with DBS in Parkinson’s disease.</p><p><strong>Materials and Methods. </strong>This qualitative study was carried out at the Neurosurgery Department of a research hospital in Turkey with seven patients who underwent DBS between 2008 and 2018. In the study, the challenges, expectations, and accomplishments of patients were investigated by using three focus group interviews in October 2018.</p><p><strong>Results. </strong>Among the participants, six patients were male, and one patient was female. The mean age of the patients was 56.85}16.48. Three main themes were revealed in the study. These were (1) Reborn; decrease in dependence, sense of accomplishment, enjoyment of life, (2) Prejudice; perceived as severely ill by others and (3) Fear; not being accustomed to the device, loss of device function.</p><p><strong>Conclusion. </strong>The results obtained from this study can be used in the process of adaptation to this process by discussing and evaluating the challenges, expectations and accomplishments of the Parkinson's patient in DBS with healthcare professionals and other patients.</p>

Deep Brain Stimulation in Early-Stage Parkinson’s Disease: Patient Experience after 11 Years

“…Patients randomized to early ODT in the trial but who later received standard-of-care DBS articulated significant improvement in symptoms following DBS implementation. This is consistent with prior reports, where the post-DBS period for standard-of-care patients is often characterized by dramatic improvement in symptoms and quality of life that patients describe as “miraculous,” “feeling reborn,” or a “new chapter in life” [ 9 , 33 , 34 ]. Symptoms become milder and more predictable, enabling patients to participate in activities they had not previously been able to manage [ 33 , 34 ].…”

“…Instead, early DBS patients spoke of the stability of their lives despite living with PD, commenting that for many years after DBS, they were not greatly affected by their PD or were even “unaware” on a daily basis that they had PD. Unlike the standard-of-care DBS patients in this study as well as in prior reports [ 9 , 33 , 34 ], early DBS patients were often unable to identify specific ways that DBS helped them, instead speculating that DBS prevents symptoms that they would have experienced without the treatment. DBS is currently applied during mid- and advanced-stage PD, a time in which medications have become less effective and patients are experiencing symptoms that severely impact their quality of life [ 9 , 29 ].…”

Deep brain stimulation as a treatment for Parkinson's disease

“…With this, it is possible to guide the final positioning of the electrode, based on assessments of the clinical response, such as the improvement of symptoms such as stiffness, tremor and side effects due to DBS, which would involve waking the patient from anesthesia after approximately 1 or 2 hours. However, there is a divergence in the literature regarding this awakening, as some studies show that not using this technique could reduce operative time and also reduce the chances of intraoperative deep cerebral hemorrhage (Habets et al, 2018;İbrahimoğlu et al, 2020).…”

Uso de Estimulação Cerebral Profunda (DBS) para o tratamento da Doença de Parkinson: uma revisão integrativa de literatura

“…Com isso, é possível orientar o posicionamento final do eletrodo, a partir de avaliações da resposta clínica, como a melhora dos sintomas como rigidez, tremor e efeitos colaterais pela DBS, o que envolveria acordar o paciente da anestesia cerca de 1 ou 2 horas. Contudo, há uma divergência de literatura acerca desse despertar, pois alguns estudos mostram que não utilizar dessa técnica poderia diminuir o tempo operatório e também reduzir as chances de hemorragia cerebral profunda intraoperatória (Habets et al, 2018;İbrahimoğlu et al, 2020).…”