Ires Ghielen

169 General discussion Body awareness and interoceptive accuracy have not yet been investigated in patients with PD. Based on the overlap with somatic symptom and related disorders and anxiety disorders, we hypothesize that it would be helpful to improve interoceptive accuracy and subsequently alter the catastrophic interpretations of bodily sensations, in order to bring body awareness to a more healthy and neutral experience. This is specifically relevant for PD patients that experience wearing-off related anxiety, where motor symptoms directly interact with anxiety symptoms. Body awareness therapies show positive results in patients with chronic pain and somatic symptom and related disorders [36, 37]. In the treatment of patients with chronic pain, positive effects are also found regarding multidisciplinary treatment in which body awareness therapy is included [36]. The BEWARE training ( chapters 7 and 8 ) was the first attempt in improving body awareness and in addressing the complex interactions between motor and anxiety symptoms in PD, by combining physical therapy with Acceptance and Commitment Therapy (ACT). Besides body awareness and learning how to cope with the complex symptom interactions, the BEWARE training also focuses on acceptance and incorporates exposure as an important element in the treatment of anxiety. Patients with intact cognitive abilities benefited the most from the BEWARE training, which indicates that the treatment requires cognitive abilities to be largely intact. Reflecting upon the non-significant results on the primary outcome measure self- efficacy, the items on this questionnaire mainly concern problem solving. However, the progressive debilitating symptoms of PD cannot always be solved. At the time of designing the pilot-RCT, there was no suitable outcome measure available in Dutch to really grasp the intention or goal of ACT, namely the acceptance and commitment to valued living despite of the debilitating symptoms. We are currently investigating an imnproved version of the BEWARE treatment in a multicenter RCT. Now, we use the Chronic Illness Acceptance Questionnaire (CIAQ) as a primary outcome measure, which may be more suitable for the goal of the treatment. Since the CIAQ was not available in Dutch and is not validated in PD patients, we officially translated (and back-translated) the CIAQ and are investigating its validity and reliability in an independent group of PD patients. In clinical research, and specifically in investigating the effectiveness of a treatment, it is important to take the patients’ experience and perspective into consideration. Patients can give valuable information about what they find most troublesome in dealing with their disease, what helps them the most or what is effective in treating their symptoms, and what is considered to have the highest impact on 9