Quality of care in dysphagia patients: adaptation and validation of the Swedish SWAL-CARE questionnaire.

BACKGROUND: The aim of this study was to adapt the instrument and evaluate the psychometric properties of the Swedish version of the Swallowing Quality of Care questionnaire (S-SWAL-CARE) in patients with oropharyngeal dysphagia. METHODS: Translation and adaptation of the original SWAL-CARE into Swedish was performed according to established international guidelines. Field testing was performed using 100 patients with oropharyngeal dysphagia due to multiple reasons such as head and neck cancer and neurologic/neuromuscular disease, who had undergone swallowing evaluation within 6 months prior to the study. The patients answered the S-SWAL-CARE, the Quality from the Patient's Perspective (QPP) and the Swallowing Quality of Life (SWAL-QOL). Test-retest was performed in 20% of the participants. The reliability and validity of the S-SWAL-CARE were assessed by Pearson correlation coefficient and Cronbach's alpha as well as convergent and discriminative validity, respectively. RESULTS: The field testing of the S-SWAL-CARE resulted in sufficient reliability, with Cronbach's alpha values exceeding 0.90 for all domains. All items correlated strongly to their own domain, with weaker correlations to the other domains, indicating proper scale structure. Results also indicate sufficient convergent and discriminant validity when tested for association to the QPP domains and the SWAL-QOL Total score. The test-retest reliability of the S-SWAL-CARE demonstrated sufficient intraclass correlation coefficient (ICC) for the General advice domain (0.73) and Clinical advice domain (0.82). The ICC for the Patient satisfaction domain was lower (0.44). CONCLUSION: The S-SWAL-CARE can be considered a reliable and valid tool to assess the dysphagia-related quality of care in a mixed Swedish dysphagia patient population.

Identifying organs at risk for radiation-induced late dysphagia in head and neck cancer patients.

BACKGROUND AND PURPOSE: Dysphagia is a common, severe and dose-limiting toxicity after oncological treatment of head and neck cancer (HNC). This study aims to investigate relationships between radiation doses to structures involved in normal swallowing and patient-reported as well as clinically measured swallowing function in HNC patients after curative (chemo-) radiation therapy (RT) with focus on late effects. MATERIALS AND METHODS: Patients (n = 90) with HNC curatively treated with RT ±â€¯chemotherapy in 2007-2015 were assessed for dysphagia post-treatment by telephone interview and videofluoroscopy (VFS). A study-specific symptom score was used to determine patient-reported dysphagia. The Penetration-Aspiration Scale (PAS) was applied to determine swallowing function by VFS (PAS ≥ 4/ ≥ 6 = moderate/severe dysphagia). Thirteen anatomical structures involved in normal swallowing were individually delineated on the patients' original planning CT scans and associated dose-volume histograms (DVHs) retrieved. Relationships between structure doses and late toxicity were investigated through univariable and multivariable logistic regression analysis (UVA/MVA) accounting for effects by relevant clinical factors. RESULTS: Median assessment time was 7 months post-RT (range: 5-34 months). Mean dose to the contralateral parotid gland and supraglottic larynx as well as maximum dose to the contralateral anterior digastric muscle predicted patient-reported dysphagia (AUC = 0.64-0.67). Mean dose to the pharyngeal constrictor muscle, the larynx, the supraglottic larynx and the epiglottis, as well as maximum dose to the contralateral submandibular gland predicted moderate and severe dysphagia by VFS (AUC = 0.71-0.80). CONCLUSION: The patients in this cohort were consecutively identified pre-treatment, and were structurally approached and assessed for dysphagia after treatment at a specific time point. In addition to established dysphagia organs-at-risk (OARs), our data suggest that epiglottic and submandibular gland doses are important for swallowing function post-RT. Keeping DVH thresholds below V60 = 60% and V60 = 17%, respectively, may increase chances to reduce occurrence of severe late dysphagia. The results need to be externally validated in future studies.

Correlations Between Patient-Reported Dysphagia Screening and Penetration-Aspiration Scores in Head and Neck Cancer Patients Post-oncological Treatment.

Dysphagia is a common and severe toxicity after oncological treatment of head and neck cancer (HNC). The study aim was to investigate relationships between patient-reported dysphagia and clinically measured swallowing function in HNC after modern curative radiotherapy with or without chemotherapy to identify possible alarm symptoms for clinically manifest dysphagia. Patients with tumors of the tonsil, base of tongue, hypopharynx, and larynx treated in 2007-2015 were assessed for dysphagia post-treatment by telephone interview and videofluoroscopy (VFS). A study-specific categorized symptom score was used to determine patient-reported dysphagia (DESdC = presence of Drinking, Eating, Swallowing difficulties, and Coughing when eating/drinking (any combination); scores between 0 and 4 with 0 = no symptom); the penetration-aspiration scale (PAS) to determine swallowing function by VFS. Swallowing difficulties were defined as DESdC ≥ 1 and PAS ≥ 2. Relationships between clinically relevant cut-offs for DESdC and PAS were determined by Pearson's correlation coefficient (Pr). Swallowing difficulties according to DESdC were reported by 89% of the patients and according to PAS by 60% at a median of 7 months post-treatment. Averaged correlations between DESdC score 1/2/3/4 and PAS were 0.16/0.10/0.27/0.18. Almost one in two patients with DESdC score ≥3 had severe swallowing difficulties according to PAS. Correlations between individual DESdC:s were highest for swallowing and eating (Pr = 0.53) and lowest for swallowing and coughing (Pr = 0.11). Our data suggest that if a patient reports having swallowing difficulties, it is likely that he or she also has eating difficulties but not necessarily coughing problems when eating/drinking. However, if all these three symptoms are reported, it is likely that the patient will present with moderate or severe impaired swallowing function according to PAS and thus should be referred for further evaluation and treatment.

Within-Bolus Variability of the Penetration-Aspiration Scale Across Two Subsequent Swallows in Patients with Head and Neck Cancer.

To compare two consecutive swallowing attempts to study if there is a difference in Rosenbek's penetration-aspiration scale (PAS) scores between the first and second swallowing attempt of the same bolus type in videofluoroscopic examination of swallowing (VFS). Additional aims include reflecting on which bolus sizes and consistencies are the most relevant to include in further studies for head and neck cancer (HNC) patients. The VFS for 38 patients curatively treated for HNC was studied. All included patients showed swallowing difficulties (PAS ≥ 2). The examination protocol included two swallows each of six different boluses: 3, 5, 10, 20 ml thin, 5 ml mildly thick, and 3 ml of extremely thick liquid. All boluses were compared between the first and second swallowing attempt with regard to PAS scores. No statistically significant differences in PAS were found between the first and second swallow for any of the boluses in this study on group level. For 20 ml thin and 3 ml extremely thick liquid, there were low Intra-Class Correlations, indicating a low within-bolus agreement. The greatest within-bolus differences were found for 20 ml thin, 5 ml mildly thick and 3 ml extremely thick liquid, which demonstrated high intra-individual coefficient of variation (0.458-0.759). The data of this study show a high within-bolus variability of the PAS score between two subsequent swallows for all different consistencies. In order to assess swallowing safety, the highest PAS score for each bolus type is suggested for use in studies of HNC patients.

Swallowing Quality of Life After Zona Incerta Deep Brain Stimulation.

OBJECTIVES: The management of Parkinson's disease (PD) has been improved, but management of signs like swallowing problems is still challenging. Deep brain stimulation (DBS) alleviates the cardinal motor symptoms and improves quality of life, but its effect on swallowing is not fully explored. The purpose of this study was to examine self-reported swallowing-specific quality of life before and after caudal zona incerta DBS (cZI DBS) in comparison with a control group. METHODS: Nine PD patients (2 women and 7 men) completed the self-report Swallowing Quality of Life questionnaire (SWAL-QOL) before and 12 months after cZI DBS surgery. The postoperative data were compared to 9 controls. Median ages were 53 years (range, 40-70 years) for patients and 54 years (range, 42-72 years) for controls. RESULTS: No significant differences were found between the pre- or postoperative scores. The SWAL-QOL total scores did not differ significantly between PD patients and controls. The PD patients reported significantly lower scores in the burden subscale and the symptom scale. CONCLUSIONS: Patients with PD selected for cZI DBS showed good self-reported swallowing-specific quality of life, in many aspects equal to controls. The cZI DBS did not negatively affect swallowing-specific quality of life in this study.