Search

Helene Bacher,1 Ramona Schweyen,1 Dirk Vordermark,2 Bernd Leplow,3 Jeremias Hey1 1Department of Dental Prosthetics, University Hospital Halle/Saale, Halle (Saale), Germany; 2Clinic for Radiotherapy, University Hospital Halle/Saale, Halle (Saale), Germany; 3Institute of Psychology,Martin Luther University Halle-Wittenberg, Halle (Saale), GermanyCorrespondence: Helene BacherUniversitätsklinikum Halle (Saale), Universitätsklinik und Poliklinik für Zahnärztliche Prothetik, Magdeburger Str. 16, Halle (Saale) 06112, GermanyTel +49 345 557 3777Fax +49 345 557 3779Email helene.mueller@uk-halle.dePurpose: The aim of the study was to develop an optimally designed and comprehensibly formulated patient information leaflet (PIL) to improve patients’ memory of information provided by physicians during a radiotherapy (head and neck area) consultation. This PIL was tested on unaffected probands for its usefulness in clinical practice.Patients and Methods: A panel of experts compiled the main topics using Lawshe’s content validity ratio. Flesch’s Reading Ease Score (FRE) and the Baker Able Leaflet Design (BALD) index were adapted to appropriate values to determine text comprehensibility and graphic design. The evaluation involving unaffected participants (231 men, 380 women, 21 not specified; mean age = 32 ± 13.63 years, range = 18– 79 years) was conducted based on three questionnaires for four groups of respondents with varying prior knowledge of the subject. When answering the questionnaires, only half the participants had access to the PIL.Results: The expert panel included 59 out of 75 proposed topics. After reformulations, the FRE was adjusted from 38.5 to 51.4. The BALD index ranged from 24 to 26, depending on the printout edition. The evaluation of 632 unaffected participants indicated a difference in the correctly answered items that ranged from 2.86% to 30.76% between participants with and without access to the PIL.Conclusion: The general guidelines for the design of written patient information material were met. The evaluation of unaffected volunteers resulted in an advantage by answering the questionnaires after receiving the PIL. This study supports health practitioners in the development, design, and evaluation of written information material using scientific methods. An evaluation should be performed on affected patients.Keywords: patient education, cancer, surveys and questionnaires, oral hygiene, information dissemination, patient satisfaction

Helene Bacher,1 Ramona Schweyen,1 Thomas Kuhnt,2 Bernd Leplow,3 Jeremias Hey1 1Department of Dental Prosthetics, University Hospital Halle/Saale, Halle (Saale), Germany; 2Clinic for Radiotherapy, University Hospital Leipzig, Leipzig, Germany; 3Institute of Psychology, Institute for Therapy and Health Research (IFT-Nord), Martin Luther University Halle-Wittenberg, Halle/Saale, GermanyCorrespondence: Helene BacherDepartment of Dental Prosthetics, University Hospital Halle/Saale, Magdeburger Straße 16, Halle (Saale) 06112, GermanyTel +49 345 557 3787Fax +49 345 557 3779Email helene.mueller@uk-halle.dePurpose: A patient information leaflet (PIL) on oral and dental care during radiotherapy was tested whether and at which time during therapy it would be helpful to increase the knowledge about the therapy and the resulting side effects and the management of these. Additionally, the participants’ subjective perception of being well informed about the topic was examined.Participants and Methods: Surveys were conducted in August 2018–April 2019, at the University Hospitals Halle and Leipzig (Germany). The study population consisted of patients who were treated with radiotherapy in the head and neck region. Half of them received access to the PIL. The survey was conducted with three different versions of a printout questionnaire, which covered the relevant topics at three different times of therapy. The time the participants were surveyed depended on the time of their first therapy appointment. The items of the questionnaires tested their concrete knowledge and assessed the subjective perception of the level of information received.Results: Of the 81 participants who received the PIL, 93.8% read it and 92.1% of them considered it helpful. The sample comprised 181 participants aged 32 to 85 years (M = 62.9), of which 135 were males, 42 were females, and 4 were unspecified. Evaluation showed a difference of 4.7%; 18.5%; and 13.6% in correct answers between subjects with and without access to the PIL before, during, and after the therapy, respectively. The assessment of the participants’ personal information level was independent of their access to the PIL (chi-squared test, p = 0.89).Conclusion: Having access to the PIL increased participants’ ability to answer the questionnaires correctly. Access to the PIL had no influence on the subjective feeling of being well informed.Keywords: patient education, cancer, survey, oral hygiene, therapy, patient satisfaction

Bernd Leplow, Anna Eggebrecht, Johannes PohlDepartment of Psychology, Martin-Luther-University Halle-Wittenberg, Germany Background: Differential effects of botulinum toxin (BoNT) treatment in cervical dystonia (CD) and blepharospasm (BSP) treatment satisfaction and emotional responses to a life with a disabling condition were investigated. Special interest was drawn to the course within a BoNT treatment cycle and the effects of subjective well-being vs perceived intensity of motor symptoms and quality of life.Methods: A questionnaire was distributed among 372 CD patients and 125 BSP patients, recruited from 13 BoNT centers throughout Germany. Items were related to dystonic symptoms, BoNT treatment responses and treatment satisfaction, quality of life, working situation, and emotional reactions to a life with dystonia.Results: CD patients and BSP patients were widely satisfied with BoNT treatment, but treatment satisfaction worsened significantly within the treatment cycle. Especially CD patients reported that both the dystonic symptoms and the effects of BoNT treatment were influenced by emotional factors. Despite good overall treatment effects, patients from both groups perceived marked persistence of motor symptoms, restrictions of everyday life functions, and reduced quality of life. Functional amelioration of motor symptoms and emotional well-being were only moderately correlated. About 22% of patients from both groups reported mental disorders or emotional disturbances prior to the onset of dystonia.Conclusion: As numerous psychological factors determine perceived outcome, BoNT treatment should be further improved by patient’s education strategies enhancing behavioral self-control. From the patient’s perspective, individual intervals, which may avoid exacerbation between injection points, should be considered. Moreover, patients at risk, with reduced adherence and poor BoNT outcome, should be identified and addressed within psychoeducation.Keywords: cervical dystonia, blepharospasm, botulinum toxin, adherence, treatment satisfaction