Date of Award
Cynthia McRae, Ph.D.
Parkinson’s disease (PD) is a chronic and progressive neurological disorder that causes both motor symptoms and non-motor symptoms in individuals. Overall, PD impacts the physical, emotional and social functioning in the lives of those impacted by the disorder. In 2001, Freed et al. investigated the effects of fetal tissue transplantation in participants with PD by conducting a double-blind sham-controlled surgery trial. The quality of life (QoL) study was conducted concurrently by McRae et al. (2004) in order to determine whether QoL improved in participants in the transplant group compared to the sham group after the one-year period of the double-blind.
Research regarding the long-term impact of the fetal tissue transplantation on individuals with PD is extremely limited and there is little known regarding the long-term impact of participating in a double-blind sham-controlled surgery trial. This study examined the longitudinal changes, from both a quantitative and qualitative perspective, in QoL after undergoing the fetal tissue transplantation surgery approximately 13-15 years ago. There were a total of five participants who participated in the parent study (Freed et al., 2001) and original QoL study (McRae, 2004). All five participants completed an interview to gather qualitative information regarding their personal experiences over the last 13-15 years and four participants completed a questionnaire that measured several dimensions of QoL as well as optimism. The information gathered in the current study was plotted along with the data collected at baseline, 12, and 24 months after transplantation as well as a previous follow-up in 2008. The change over time in QoL was thus charted for each of the four individuals as well as average scores at each time point on each measure. Interviews were transcribed and coded for themes in order to describe the experiences of the participants in the unique study.
In the current study, the changes on several aspects of QoL were examined over the last 13-15 years. The majority of the participants showed decline on all the measures assessing Physical functioning, Emotional functioning, and Social functioning as well as Optimism between the 10-12-year follow-up in 2008 and the current assessment. However, the decline in functioning on several measures was less than expected given the progression of their illness. The qualitative data (e.g., narratives) provided insight into possible explanations for the resiliency amongst the participants who participated in the transplant surgery trial including the participants’ dedication to contributing to our knowledge of PD and treatments of PD, strong social support, and internal drive to continue to live active and meaningful lives.
Kuhne, Jessica, "Longitudinal Perspective of Participation in a Double Blind Placebo Surgery Trial" (2014). Electronic Theses and Dissertations. 350.
Received from ProQuest
Psychology, Health sciences