Background: Dysphagia is potentially life‐threatening and highly prevalent in people with severe/profound intellectual and multiple disabilities (SPIMD). The “Signaleringslijst Verslikken” (SV) is a frequently used Dutch screening tool to detect dysphagia. The aim was to examine the convergent validity of the SV for people with SPIMD. Method: Direct support staff completed the SV, with speech and language therapists scoring a validated tool, the Dysphagia Disorders Survey (DDS), for 41 persons with SPIMD, aged ≥50 years. The results were compared for agreement using the McNemar's Test. Results: The proportion of agreement was 0.59 (95% CI 0.43–0.72). The SV did not detect dysphagia in 17 participants (44%) who were assessed as having dysphagia according to the DDS. The difference in proportion of detection of dysphagia between the two methods was significant (p < 0.0001). Conclusions: The results suggest that the convergent validity of the SV is insufficient: the SV is not sensitive for detecting dysphagia in people with SPIMD.
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OBJECTIVE: The objective was to assess swallowing, mouth opening and speech function during the first year after radiation-based treatment (RT(+)) after introduction of a dedicated preventive rehabilitation program for stage III-IV oropharyngeal carcinoma (OPC).METHODS: Swallowing, mouth opening and speech function were collected before and at six- and twelve-month follow-up after RT(+) for OPC as part of ongoing prospective assessments by speech-language pathologists .RESULTS: Objective and patient-perceived function deteriorated until 6 months and improved until 12 months after treatment, but did not return to baseline levels with 25%, 20% and 58% of the patients with objective dysphagia, trismus and speech problems, respectively. Feeding tube dependency and pneumonia prevalence was low.CONCLUSION: Despite successful implementation, a substantial proportion of patients still experience functional limitations after RT(+) for OPC, suggesting room for improvement of the current rehabilitation program. Pretreatment sarcopenia seems associated with worse functional outcomes and might be a relevant new target for rehabilitation strategies.
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BACKGROUND AND PURPOSE: Radiotherapy of the head and neck is challenged by the relatively large number of organs-at-risk close to the tumor. Biologically-oriented objective functions (OF) could optimally distribute the dose among the organs-at-risk. We aimed to explore OFs based on multivariable normal tissue complication probability (NTCP) models for grade 2-4 dysphagia (DYS) and tube feeding dependence (TFD).MATERIALS AND METHODS: One hundred head and neck cancer patients were studied. Additional to the clinical plan, two more plans (an OFDYS and OFTFD-plan) were optimized per patient. The NTCP models included up to four dose-volume parameters and other non-dosimetric factors. A fully automatic plan optimization framework was used to optimize the OFNTCP-based plans.RESULTS: All OFNTCP-based plans were reviewed and classified as clinically acceptable. On average, the Δdose and ΔNTCP were small comparing the OFDYS-plan, OFTFD-plan, and clinical plan. For 5% of patients NTCPTFD reduced >5% using OFTFD-based planning compared to the OFDYS-plans.CONCLUSIONS: Plan optimization using NTCPDYS- and NTCPTFD-based objective functions resulted in clinically acceptable plans. For patients with considerable risk factors of TFD, the OFTFD steered the optimizer to dose distributions which directly led to slightly lower predicted NTCPTFD values as compared to the other studied plans.
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Background: Infantile hereditary proximal spinal muscular atrophy (SMA) type 1 is characterized by onset in the first 6 months of life and severe and progressive muscle weakness. Dysphagia is a common complication but has not been studied in detail. Objective: To study feeding and swallowing problems in infants with SMA type 1, and to explore the relation between these problems and functional motor scores. Methods: We prospectively included 16 infants with SMA type 1 between September 2016 and October 2018. Eleven infants received palliative care and five infants best supportive care in combination with nusinersen. We compiled and used an observation list with feeding related issues and observed feeding sessions during inpatient and outpatient visits. The Children’s Hospital of Philadelphia Infant Test of Neuromuscular Disorders (CHOP INTEND) was used as a measure of motor function. Results: All infants in the palliative care group (median onset of disease 14 days (range 1–56); median inclusion in the study 52 days (range 16–252) demonstrated symptoms of fatigue during feeding and unsafe swallowing. Symptoms were short nursing sessions (10–15 minutes), and not being able to finish the recommended feeding volumes (72%); increased frequency of feeding sessions (55%); coughing when drinking or eating (91%), and wet breathing during and after feeding (64%).Two out of five infants in the nusinersen group (median onset of disease 38 days (range 21–90); inclusion in the study at 63 days (range 3–218) were clinically pre-symptomatic at the start of treatment. The other three infants showed symptoms of fatigue and unsafe swallowing at inclusion in the study. These symptoms initially decreased after the start of the treatment, but (re)appeared in all five infants between the ages of 8 to 12 months, requiring the start tube of feeding. In the same period motor function scores significantly improved (median increase CHOP INTEND 16 points). Conclusion: Impaired feeding and swallowing remain important complications in infants with SMA type 1 after the start of nusinersen. Improvement of motor function does not imply similar gains in bulbar function.
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Thirty to sixty per cent of older patients experience functional decline after hospitalisation, associated with an increase in dependence, readmission, nursing home placement and mortality. First step in prevention is the identification of patients at risk. The objective of this study is to develop and validate a prediction model to assess the risk of functional decline in older hospitalised patients.
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Objective swallowing outcomes measure the physical swallowing function, while subjective outcomes measure swallowing perception. A test for swallowing capacity, measuring the ingestion of all consistencies is currently not available. Therefore, the Swallowing Proficiency for Eating And Drinking (SPEAD) test was developed. It entails the timed ingestion of thin liquid, thick liquid and solid. In this study, its feasibility, reliability and validity were evaluated in patients with dysphagia after treatment for head and neck cancer (HNC) and healthy participants. Thirty-eight HNC patients and forty healthy participants were enrolled in this study and performed the SPEAD test three times. Video recordings of the test were evaluated three times by one observer, and once by three additional observers, to assess test-retest, intra-rater and inter-rater reliability. Validity was assessed by calculating effect sizes for the difference between results of patients and healthy participants and by evaluating correlations with objective (e.g., videofluoroscopy and functional oral intake scale) and subjective (e.g., SWAL-QOL) swallowing outcomes. Test-retest, intra-rater and inter-rater reliability of ingestion duration was good to excellent. All hypotheses with regard to magnitude and direction of correlations were confirmed, supporting construct validity of the test. Our initial results suggest that the SPEAD test reliably measures the transport capacity of the upper digestive tract (in grams per second) and that this test can be useful to objectively evaluate and monitor the (safe) swallowing capacity in HNC patients, in both research as well as daily clinical practice.
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Dit artikel is een samenvatting van het artikel: The convergent validity of a Dutch Screening tool for Dysphagia (SignaleringslijstVerslikken) for people with severe or profound intellectual and multiple disabilities. Journal of Applied Research in IntellectualDisabilities, 2019, 32, 994–1001.1
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Summary Purpose The purpose of this study was to investigate the adoption and actual use of a digital dietary monitoring system (DDMS) and its impact on patient satisfaction with the provided hospital care, body weight changes and health-related quality of life (HRQoL) in patients with potentially curable esophageal cancer planned for surgery. The DDMS enables patients and dietitians to monitor patients' nutritional intake and body weight during the preoperative period. Methods In this prospective observational study, the first 47 included patients received usual nutritional care, and were followed from diagnosis until surgery. After implementation of the DDMS 37 patients were followed, again from diagnosis until surgery. Main outcomes were actual use of the DDMS, by means of adoption and usage measures, overall patient satisfaction (EORTC-INPATSAT32), weight change and HRQoL (EORTC QLQ-C30 and EORTC-OG25). Outcomes were assessed immediately after diagnosis, and 6 and 12 weeks later. Results The system had an adoption rate of 64% and a usage rate of 78%. No significant effects on patient satisfaction were found at 12 weeks after diagnosis between the intervention and the usual care group. The implementation of the DDMS also had no significant effect on body weight and HRQoL over time. Conclusions Patients with potentially curable esophageal cancer planned for surgery were able to use the DDMS. However, no significant effects on patient satisfaction, body weight changes and HRQoL were observed. Further research should focus on the specific needs of patients regarding information and support to preoperatively optimize nutritional intake and nutritional status.
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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.
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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.
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