Do all patients in the epilepsy monitoring unit experience the same level of comfort? A quantitative exploratory secondary analysis.

AIMS: To find out which variables may be associated with comfort of patients in an epilepsy monitoring unit. DESIGN: Exploratory, quantitative study design. METHODS: Data were collected from October 2018 to November 2019 in Austria and Southern Germany. A total of 267 patients of 10 epilepsy centres completed the Epilepsy Monitoring Unit Comfort Questionnaire which is based on Kolcaba's General Comfort Questionnaire. Secondary data analysis were conducted by using descriptive statistics and an exploratory model building approach, including different linear regression models and several sensitivity analyses. RESULTS: Total comfort scores ranged from 83 to 235 points. Gender, occupation and centre turned out to be possible influential variables. On average, women had a total comfort score 4.69 points higher than men, and retired persons 28.2 points higher than high school students ≥18 years. Comfort scores of younger patients were lower than those of older patients. However, age did not show a statistically significant effect. The same could be observed in marital status and educational levels. CONCLUSION: When implementing comfort measures, nurses must be aware of variables which could influence the intervention negatively. Especially, high school students ≥18 years should be supported by epilepsy specialist nurses, in order to reduce uncertainty, anxiety and discomfort. But, since the identified variables account only for a small proportion of the inter-individual variability in comfort scores, further studies are needed to find out additional relevant aspects and to examine centre-specific effects more closely. IMPACT: Nurses ensure patient comfort during a hospital stay. However, there are variables that may impair the effectiveness of the nursing measures. Our study showed that the experience of comfort was highly individual and could be explained by sociodemographic variables only to a limited extent. Nurses must be aware that additional factors, such as the situation in the individual setting, may be relevant.

Palliative Care Challenges of Patients With Progressive Bulbar Palsy: A Retrospective Case Series of 14 Patients.

Progressive bulbar palsy (PBP) is a form of motoneuron disease and is widely classified as a subtype of amyotrophic lateral sclerosis (ALS) with a shorter time of survival and female predominance. In this retrospective case series of 14 patients with PBP, we focus on challenges in palliative care for this patient cohort, including symptom control, gastrostomy, non-invasive ventilation, and end-of-life phase. We show that rapid physical decline at the end of life is associated with bronchopulmonary infection and excessive oral secretion leading to a high level of symptom burden. Early and regular advance care planning discussions with a focus on oral secretion management with patients and caregivers are crucial.

Considerations in preparing a multicenter study: Lessons learned from the Epilepsy Monitoring Unit Comfort Questionnaire (EMUCQ) validation feasibility study.

PURPOSE: It is recommended to perform a pilot testing before conducting a validation study of a novel questionnaire. Pilot studies may serve different purposes. The aim of this study was to assess the feasibility of a multicenter validation study, to recruit additional study centers, and to undertake orientating descriptive item analysis of the 44-item Epilepsy Monitoring Unit (EMU) Comfort Questionnaire (EMUCQ). METHODS: During a six-month sampling period, the EMUCQ was administered to eligible EMU patients. The patients filled out the questionnaire at two time points. Additional centers were recruited in Germany and Austria, and ethics votes obtained. In descriptive item analysis central tendency, variability, item distribution and item difficulty were calculated. RESULTS: A total of 44 EMU patients participated in the study. Eight additional EMUs agreed to join the planned validation study. Recruitment of the centers took four months. Another six months passed to obtain all the ethics votes. Floor and ceiling effects could be detected in 32 items. One item with the lowest median showed the low item difficulty. Another five items showed medians with the height of 6. In four items, high difficulty indices could be observed. CONCLUSION: A good network has turned out to be very helpful while planning a multicenter study. Enough time must be scheduled, because obtaining an ethics vote may take quite a long time. No conclusive statements regarding item properties could be made as this was a feasibility study.

Assessing comfort in the epilepsy monitoring unit: Development of an instrument.

BACKGROUND/PURPOSE: Some patients perceive the experience of hospitalization in an epilepsy monitoring unit (EMU) to be an uncomfortable one. In order to provide comfort-enhancing measures, nurses need to assess comfort levels. For this purpose, Kolcaba developed the General Comfort Questionnaire (GCQ), which may be modified for usage in specific settings. The objective of this study was to develop an instrument to assess comfort of adult patients during hospitalization in an EMU, namely the Epilepsy Monitoring Unit Comfort Questionnaire (EMUCQ). METHODS: The GCQ was translated from American English into German following the guidelines of the International Society for Pharmacoeconomics and Outcome Research (ISPOR). Three native German speakers with good command of the English language did forward translations. An expert who grew up bilingual did a backtranslation. For use in an EMU, literature-based setting-specific items were added. In a qualitative-descriptive study, cognitive debriefing with 25 patients was conducted using cognitive interviews. Qualitative data analysis was based on the framework method. In a quantitative-descriptive study, nine clinical experts assessed content validity. RESULTS: For setting-specific modification, 12 items pertaining to surroundings, feeling observed, and feeling afraid of a seizure were added to the translated GCQ. Based on the initial content validity rating, 26 items remained unchanged, 12 items underwent revisions, and 14 items were omitted. Eight items were put aside for a follow-up rating in the context of cognitive debriefing. Cognitive interviewing revealed problems regarding the interpretation of items and missing items. According to the results, 27 items remained unchanged, 11 items were reworded, and six items were added. The final content validity rating showed item-content validity indices (I-CVI) between .33 and 1, and an average CVI on a scale level (S-CVI/ave) of .84. CONCLUSIONS: Enhancing comfort is a fundamental nursing goal in demanding situations. Therefore, the contribution of nurses to the quality of individualized patient care is a substantial one. The EMUCQ is a valuable tool to support the assessment of comfort levels. The ISPOR guidelines proved to be useful to ensure high quality of the translated instrument. Using cognitive interviews enhanced the understandability of items and supported modification of the GCQ. At present, S-CVI/ave value of the EMUCQ is acceptable. Further testing is necessary.

Enhancing validity through cognitive interviewing. A methodological example using the Epilepsy Monitoring Unit Comfort Questionnaire.

AIMS: To identify problematic items, assess completeness and user-friendliness, and undertake modifications to enhance face validity of the newly developed Epilepsy Monitoring Unit Comfort Questionnaire. DESIGN: Qualitative-descriptive cross-sectional study. METHODS: Five iterative rounds of cognitive interviewing were conducted with members of the target population between July - November 2017. Think-aloud technique, verbal probing, and observation were used, to assess how respondents understood and answered questions. Data analysis was based on the framework method; an eight-column framework matrix was created for this purpose. RESULTS: In 25 interviews, problems regarding completeness of the item pool, comprehension of items, retrieval of information, judgment while finding answers and reporting the appropriate responses could be detected. According to the results, 27 items remained unchanged, 11 items were reworded, and six items were added. Instructions section of the questionnaire was reworked, too. CONCLUSION: Although time-consuming, cognitive interviewing turned out to be a valuable approach for revealing problems in an instrument, which would, otherwise, remain undetected and threaten validity.

Determination of Content Validity of the Epilepsy Monitoring Unit Comfort Questionnaire Using the Content Validity Index.

BACKGROUND AND PURPOSE: The Epilepsy Monitoring Unit Comfort Questionnaire (EMUCQ) is a self-assessment instrument to measure perceived patient comfort during hospitalization in an EMU. This study aimed at initially determining the content validity by rating the content validity index (CVI). METHODS: Nine experts judged the 60-item EMUCQ-1 by filling out a content validation form. The CVI was computed on item (I-CVI) and at an average scale (S-CVI/Ave) level. RESULTS: As many as 26 items remained unchanged and 12 items were reworded to prepare the 38-item EMUCQ-2 (I-CVI scores ≥ .78). Fourteen items were omitted and an additional eight items were put aside for further evaluation. The S-CVI/Ave reached .90. CONCLUSION: The first results indicate the EMUCQ-2 to be valid in terms of content. Further assessment by members of the target population is advisable.

Epilepsy monitoring - The patients' views: A qualitative study based on Kolcaba's Comfort Theory.

PURPOSE: The aim of this qualitative study was to determine which perception of personal comfort patients name in the context of their hospitalization in an Austrian Epilepsy Monitoring Unit (EMU). METHODS: Problem-centred interviews with twelve inpatients were conducted. Data analyses were done according to Mayring's qualitative content analyses following the technique of structuring-deductive category assignment. RESULTS: Patients experienced different kinds of comfort along with their hospitalization in the EMU. Comfort-decreasing factors were bed rest, boredom, and waiting for possible seizures. As comfort-increasing factors, hope for enhanced seizure control, support by family and staff, and intelligible information about the necessity of restrictive conditions were identified. CONCLUSIONS: The study results should assist health care professionals, enabling them to design comfort enhancing interventions for patients undergoing video-electroencephalography (EEG) investigations in an EMU. Some of these seem to be simple and obtainable without high financial or technical effort. Others are more complex and have to be further assessed for their feasibility.