A timed test of swallowing capacity has been designed for use in patients with neurogenic dysphagia. Swallowing speed (mlls) has been demonstrated to have high intra-and inter-rater and test-retest reliability, and to be essentially independent of flavour or temperature. "Guideline" normal values were established in individuals without a swallowing disorder: swallowing speed was less in females than males and declined in both groups with age. obtain an adequate view of laryngeal movement during each swallow so that the number of swallows can be counted. The time and number of swallows taken from the "go" signal to the last swallow recognised by return of the larynx to the rest position (as seen exteriorly by the movement of the thyroid cartilage) are noted. Any coughing during or after the test and the quality of the voice after the test is noted. The residual volume is measured in those in whom the test is abandoned so that in all cases speed (ml/s), and average volume/ swallow (ml) are calculated. Such a test is clearly inappropriate in patients with major dysphagia who are obviously aspirating.2) Reliability studies Intra-rater reliability was assessed by one examiner timing twice the videotaped record of the swallows undertaken by six normal subjects or patients in random order and with the stopwatch face obscured. Inter-rater reliability was examined by 6 observers observing videos of swallowing tests on five normal subjects or patients. The possibility of a learning effect was tested in 24 normal subjects by repeating the test in each subject 4 times over a 48 hour period: at the same time the effect of flavouring the drink was assessed by randomising the order of the 4 drinks-2 of which were water and two a flavoured drink. The effect of temperature on swallowing speed was studied by presenting water at three different temperatures (9°C, 19°C, 39°C) in random order to 6 normal subjects. Finally, swallowing speed was measured twice, at an interval of 1 to 37 days, in 38 neurological patients, of whom 24 had abnormal swallowing speeds (see below).3) Guideline normal ranges A swallowing test was undertaken in 101 "normal" subjects to establish a guideline range for swallowing speed. Individuals with clinically relevant medical or swallowing disorders were excluded.
Management decisions for patients with cancer are frequently taken within the context of a multi-disciplinary team (MDT). There is little known, however, about decision-making at team meetings and whether MDT decisions are all implemented. This study evaluated team decision-making in upper gastrointestinal cancer. Consecutive MDT treatment decisions were recorded for patients with oesophageal, gastric, pancreatic and peri-ampullary tumours. Implementation of MDT decisions was investigated by examining hospital records. Where decisions were implemented it was recorded as concordant and discordant if the decision changed. Reasons for changes in MDT decisions were identified. 273 decisions were studied and 41 (15.1%) were discordant (not implemented), (95% confidence interval 11.1-20.0%). Looking at the reasons for discordance, 18 (43.9%) were due to co-morbid health issues, 14 (34.2%) related to patient choice and 8 (19.5%) decisions changed when more clinical information was available. For one discordant decision, the reason was not apparent. Discordant decisions were more frequent for patients with pancreatic or gastric carcinoma as compared to oesophageal cancer (P = 0.001). Results show that monitoring concordance between MDT decisions and final treatment implementation is useful to inform team decision-making. For upper gastrointestinal cancer, MDTs require more information about co morbid disease and patient choice to truly optimize the implementation of multi-disciplinary expertise.
BackgroundSynthesis of patient-reported outcome (PRO) data is hindered by the range of available PRO measures (PROMs) composed of multiple scales and single items with differing terminology and content. The use of core outcome sets, an agreed minimum set of outcomes to be measured and reported in all trials of a specific condition, may improve this issue but methods to select core PRO domains from the many available PROMs are lacking. This study examines existing PROMs and describes methods to identify health domains to inform the development of a core outcome set, illustrated with an example.MethodsSystematic literature searches identified validated PROMs from studies evaluating radical treatment for oesophageal cancer. PROM scale/single item names were recorded verbatim and the frequency of similar names/scales documented. PROM contents (scale components/single items) were examined for conceptual meaning by an expert clinician and methodologist and categorised into health domains. A patient advocate independently checked this categorisation.ResultsSearches identified 21 generic and disease-specific PROMs containing 116 scales and 32 single items with 94 different verbatim names. Identical names for scales were repeatedly used (for example, ‘physical function’ in six different measures) and others were similar (overlapping face validity) although component items were not always comparable. Based on methodological, clinical and patient expertise, 606 individual items were categorised into 32 health domains.ConclusionThis study outlines a methodology for identifying candidate PRO domains from existing PROMs to inform a core outcome set to use in clinical trials.
Objective. Patient-reported outcome measures (PROMs) need to include concepts and language relevant to patients and be easily understood. These studies aimed to develop draft PROMs to measure rheumatoid arthritis (RA) fatigue and its impact by collaborating with patients to identify language and experiences, create draft PROM items, and test them for comprehension, with decisions supported throughout by a patient research partner. Methods. In study 1, interview transcripts of RA patients describing their fatigue (n ؍ 15) were subjected to content and inductive thematic analysis to identify fatigue language and experiences. In study 2, 3 focus groups of RA patients (n ؍ 17) explored these and developed the wording for visual analog scales (VAS) and identical numerical rating scales (NRS), then a draft multi-item questionnaire was developed with the patient research partner. Study 3 comprised 15 RA patients who completed the PROMs during cognitive interviewing to explore understanding. Results. Studies 1 and 2 identified key patient terminology (fatigue, exhaustion) and 12 potential fatigue concepts (Cognition, Coping, Duration, Emotion, Energy, Frequency, Impact, Planning, Quality of Life, Relationships, Sleep, and Social Life). Patients' proposals were clarified into draft screening VAS/NRS for fatigue severity, effect, and coping, plus a draft 45-item questionnaire. Study 3 showed that 14 questions required clarification or revision of response options. Conclusion. Collaboration with patients enabled development of draft RA fatigue PROMs grounded in the patient data, strengthening face and content validity and ensuring comprehension. The draft conceptual framework that emerged has resulted in draft PROMS ready for item reduction, and testing of construct and criterion validity and reliability.
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