Cervical dystonia (CD) is a neurological movement disorder characterized by involuntary muscle contractions causing abnormal postures and/or twisting movements of the head and neck.Patients may also experience non-motor symptoms including pain, anxiety and depression. The main treatment option is botulinum toxin (BoNT) injections in affected muscles to improve head postures and reduce pain. In addition to BoNT treatment, patients are often referred for physical therapy (PT), but there is little evidence regarding the long-term effectiveness.Despite remarkable improvements during the last decades, there are still many unmet needs that remain open in the treatment of cervical dystonia (CD). The first goal of this thesis was to assess clinical issues in BoNT treatment that need further improvement and to define clinical recommendations for clinicians. The second goal was to explore which determinants play an important role in disability of CD patients and the third goal was to develop a specialized PT program and to evaluate its effects on disability.Results showed that BoNT treatment can be further improved despite all the evidence for its effectiveness. Further research is needed towards optimal treatment intervals, dose equivalence between different BoNT formulations, the use of supportive techniques like electromyography or ultrasound and managing side effects. Secondly, we found that psychological factors are important determinants of disability. Finally, we found that PT is a valuable addition to BoNT treatment to improve disability and pain. Based on these findings, a multidisciplinary treatment approach to further improve the treatment and quality of life for CD patients is recommended.
Background Total laryngectomy with or without adjuvant (chemo)radiation often induces speech, swallowing and neck and shoulder problems. Speech, swallowing and shoulder exercises may prevent or diminish these problems. The aim of the present paper is to describe the study, which is designed to investigate the effectiveness and cost-utility of a guided self-help exercise program built into the application “In Tune without Cords” among patients treated with total laryngectomy. Methods/design Patients, up to 5 years earlier treated with total laryngectomy with or without (chemo)radiation will be recruited for participation in this study. Patients willing to participate will be randomized to the intervention or control group (1:1). Patients in the intervention group will be provided access to a guided self-help exercise program and a self-care education program built into the application “In Tune without Cords”. Patients in the control group will only be provided access to the self-care education program. The primary outcome is the difference in swallowing quality (SWAL-QOL) between the intervention and control group. Secondary outcome measures address speech problems (SHI), shoulder disability (SDQ), quality of life (EORTC QLQ-C30, QLQ-H&N35 and EQ-5D), direct and indirect costs (adjusted iMCQ and iPCQ measures) and self-management (PAM). Patients will be asked to complete these outcome measures at baseline, immediately after the intervention or control period (i.e. at 3 months follow-up) and at 6 months follow-up. Discussion This randomized controlled trial will provide knowledge on the effectiveness of a guided self-help exercise program for patients treated with total laryngectomy. In addition, information on the value for money of such an exercise program will be provided. If this guided self-help program is (cost)effective for patients treated with total laryngectomy, the next step will be to implement this exercise program in current clinical practice.
The background and purpose of this paper is to investigate adherence, exercise performance levels and associated factors in head and neck cancer (HNC) patients participating in a guided home-based prophylactic exercise program during and after treatment [swallowing sparing intensity modulated radiation therapy (SW-IMRT)]. Fifty patients were included in the study. Adherence was defined as the percentage of patients who kept up exercising; exercise performance level was categorized as low: ≤1, moderate: 1–2, and high: ≥2 time(s) per day, on average. Associations between 6- and 12-week exercise performance levels and age, gender, tumour site and stage, treatment, intervention format (online or booklet), number of coaching sessions, and baseline HNC symptoms (EORTC-QLQ-H&N35) were investigated. Adherence rate at 6 weeks was 70% and decreased to 38% at 12 weeks. In addition, exercise performance levels decreased over time (during 6 weeks: 34% moderate and 26% high; during 12 weeks: 28% moderate and 18% high). The addition of chemotherapy to SW-IMRT [(C)SW-IMRT] significantly deteriorated exercise performance level. Adherence to a guided home-based prophylactic exercise program was high during (C)SW-IMRT, but dropped afterwards. Exercise performance level was negatively affected by chemotherapy in combination with SW-IMRT.
