To prospectively evaluate the impact of subthalamic nucleus (STN) stimulation on social adjustment in patients with Parkinson disease (PD).
Before and 18 to 24 months after bilateral STN stimulation, the authors assessed 29 patients with PD for motor disability, cognition (Mattis dementia rating scale, frontal score), psychiatric morbidity (Mini-5.0.0, MADRS, BAS), quality of life (PDQ-39), social adjustment (Social Adjustment Scale), and psychological status using unstructured in-depth interviews.
Despite marked improvement in parkinsonian motor disability, the absence of significant changes in cognitive status, and improvement of activities of daily living and quality of life by the end of the study, social adjustment did not improve. Several kinds of problems with social adjustment were observed, affecting the patients' perception of themselves and their body, marital situation, and professional life. Marital conflicts occurred in 17/24 couples. Only 9 out of 16 patients who had a professional activity before the operation went back to work after surgery.
After STN stimulation, patients experienced difficulties in their relations with themselves, their spouses, their families, and their socio-professional environment. The authors suggest a multidisciplinary psychosocial preparation and follow-up to help patients and their entourage cope with the sudden changes in their existence following successful neurosurgery.
"Schüpbach and colleagues try to explain these findings in terms of an altered body image, resulting from a “difficulty in accepting psychologically the implanted material.” They support this claim by referring to similar responses documented among patients with pacemakers and implantable cardioverter defibrillators (Schüpbach et al. 2006). It is possible that some of the 19 patients who reported a feeling of strangeness and unfamiliarity with themselves, expressing views such as “I don't feel like myself anymore” and “I haven't found myself again after the operation” (Schüpbach et al. 2006), could experience this due to their attitude toward the presence of the implant itself rather than as an outcome of the stimulation. "
[Show abstract][Hide abstract] ABSTRACT: Deep brain stimulation (DBS) is a developing technology. New generations of DBS technology are already in the pipeline, yet this particular fact has been largely ignored among ethicists interested in DBS. Focusing only on ethical concerns raised by the current DBS technology is, albeit necessary, not sufficient. Since current bioethical concerns raised by a specific technology could be quite different from the concerns it will raise a couple of years ahead, an ethical analysis should be sensitive to such alterations, or it could end up with results that soon become dated. The goal of this analysis is to address these changing bioethical concerns, to think ahead on upcoming and future DBS concerns both in terms of a changing technology and changing moral attitudes. By employing the distinction between inherent and noninherent bioethical concerns we identify and make explicit the particular limits and potentials for change within each category, respectively, including how present and upcoming bioethical concerns regarding DBS emerge and become obsolete. Many of the currently identified ethical problems with DBS, such as stimulation-induced mania, are a result of suboptimal technology. These challenges could be addressed by technical advances, while for instance perceptions of an altered body image caused by the mere awareness of having an implant may not. Other concerns will not emerge until the technology has become sophisticated enough for new uses to be realized, such as concerns on DBS for enhancement purposes. As a part of the present analysis, concerns regarding authenticity are used as an example.
"However, not all patients show a marked improvement and not all symptoms show similar responsiveness. An assumption that the most severe (and personally significant) problems are going to improve, and by the largest extent, raises the risk that patients may be dissatisfied with the outcome [18,26]. Identifying such misperceptions in advance offers the opportunity to provide the patient with the facts to inform and possibly adjust their expectations of treatment ahead of time. "
[Show abstract][Hide abstract] ABSTRACT: What do patients expect from a treatment? A patient-centred approach to treatment is becoming necessary given the choices for invasive treatments for Parkinson's disease. Patient's perceptions of severity and expectations from complex therapies have not been studied. We describe the rationale and concept of developing a Patient-Reported Outcome (PRO) tool to assess perceptions of symptom severity and expectations of therapy. We report preliminary findings from use of the tool, association with clinical factors, and illustrate the potential use in individual patients awaiting therapy.
Patient symptoms were grouped into four domains, with 8 motor, 7 non-motor, 7 psychological and 4 social questions. For each question, symptom severity was rated on a Likert scale scoring from 0 (no problem) to 7 (perceived as a severe problem). Similarly, the expectation for each symptom to change after therapy was rated on a Likert scale: score -3 (expected to be very much worse) to + 3 (expected to be very much improved).
22 consecutive patients, routinely planned to receive one of DBS/IJL/Apo, were recruited: 13 male, mean (+/-sd) age: 65.6 (+/-9.5) years, mean (+/-sd) disease duration: 14.3 (+/-5.7) years. Subjective severity scores are reported as mean (+/-sd) / maximum possible score: (i) motor 23.5 (+/-7.5) / 56, (ii) non-motor 15.5 (+/-5.6) / 49, (iii) cognitive - psychological 12.4 (+/-5.8) / 49, (iv) social 9.3 (+/-4.1) / 28. Expectation of change (improvement) scores are reported as mean (+/-sd) / maximum possible score of: (i) motor 14.0 (+/-5.6) / 24, (ii) non-motor 8.5 (+/-4.1) / 21, (iii) cognitive - psychological 7.4 (+/-4.4)/ 21, and (iv) social 5.5 (+/-2.8) / 12. For each domain, Spearman correlation coefficient showed significant associations between severity and expectation within-domain.
This tool (PRO-APD) provides a description of perceived problem severity and expectation of treatments encompassing a holistic patient-driven view of care. PD patients about to receive complex therapy have moderately high perception of symptom load in multiple domains, and expect substantial improvements in multiple domains. These preliminary findings may be useful in documenting multi-domain symptoms, as well as counseling patients to help them reach realistic expectations and reduce potential dissatisfaction following therapy.
Health and Quality of Life Outcomes 01/2014; 12(1):11. DOI:10.1186/1477-7525-12-11 · 2.12 Impact Factor
"In these instances, there are concerns about the fact of change, rather than the direction of change. Straddling these different perspectives on the promise and threat of DBS are testimonials from patients reporting “a feeling of strangeness and unfamiliarity with themselves after surgery (“I don’t feel like myself anymore,” “I haven’t found myself again after the operation”)” (, 1813). "
[Show abstract][Hide abstract] ABSTRACT: This article explores the notion of the dislocated self following deep brain stimulation (DBS) and concludes that when personal identity is understood in dynamic, narrative, and relational terms, the claim that DBS is a threat to personal identity is deeply problematic. While DBS may result in profound changes in behaviour, mood and cognition (characteristics closely linked to personality), it is not helpful to characterize DBS as threatening to personal identity insofar as this claim is either false, misdirected or trivially true. The claim is false insofar as it misunderstands the dynamic nature of identity formation. The claim is misdirected at DBS insofar as the real threat to personal identity is the discriminatory attitudes of others towards persons with motor and other disabilities. The claim is trivially true insofar as any dramatic event or experience integrated into one’s identity-constituting narrative could then potentially be described as threatening. From the perspective of relational personal identity, when DBS dramatically disrupts the narrative flow, this disruption is best examined through the lens of agency. For illustrative purposes, the focus is on DBS for the treatment of Parkinson’s disease.
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