BackgroundDesmopressin increases plasma factor VIII and von Willebrand factor levels in persons with nonsevere hemophilia A. Patients’ perspectives on desmopressin are relevant to increase and... Show moreBackgroundDesmopressin increases plasma factor VIII and von Willebrand factor levels in persons with nonsevere hemophilia A. Patients’ perspectives on desmopressin are relevant to increase and optimize its suboptimal use. However, patients’ views on desmopressin are not reported.ObjectivesTo evaluate the perspectives of persons with nonsevere hemophilia A on desmopressin use, barriers for its use, side effects, and their knowledge about desmopressin’s efficacy and side effects.MethodsPersons with nonsevere hemophilia A were included in a cross-sectional, national, multicenter study. Questionnaires were filled out by adult patients and children aged ≥12 years themselves. Caretakers filled out questionnaires for children aged <12 years.ResultsIn total, 706 persons with nonsevere hemophilia A were included (544 mild, 162 moderate, [age range, 0–88 years]). Of 508 patients, 234 (50%) patients reported previous desmopressin use. Desmopressin was considered as at least moderately effective in 171 of 187 (90%) patients. Intranasal administration was the modality of choice for 138 of 182 (76%) patients. Flushing was the most reported side effect in 54 of 206 (26%) adults and 7 of 22 (32%) children. The most frequently reported advantage and disadvantage were the convenience of intranasal, out-of-hospital administration by 56% (126/227) and side effects in 18% (41/227), respectively. Patients’ self-perceived knowledge was unsatisfactory or unknown in 28% (63/225).ConclusionOverall, desmopressin was most often used intranasally and considered effective, with flushing as the most common side effect. The most mentioned advantage was the convenience of intranasal administration and disadvantage was side effects. More information and education on desmopressin could answer unmet needs in patients with current or future desmopressin treatment. Show less
Sarac, C.; Nelissen, R.G.H.H.; Holst, M. van der; Malessy, M.J.A.; Pondaag, W. 2022
Purpose To explore and compare the perspectives of patients and their parents (PPs) with a brachial plexus birth injury (BPBI) with those of health care professionals (HCPs). Materials and methods... Show morePurpose To explore and compare the perspectives of patients and their parents (PPs) with a brachial plexus birth injury (BPBI) with those of health care professionals (HCPs). Materials and methods We conducted a study using a questionnaire among PPs and HCPs. Importance of different outcome categories was scored on a Likert scale. Items were linked to corresponding categories of the International Classification of Functioning, Disability and Health. Means were compared using analysis of variance (ANOVA). Results Data were collected from 184 patients and 65 HCPs. We found a difference in 7/14 outcome categories between joint PP groups and HCPs. Parents scored outcome evaluation categories as more important than patients, categories filled out together by patient and parent scored in between (p < 0.05). The majority of PPs and HCPs rated outcome assessment as important in more domains than "Body functions" and "Body structures". The biggest difference was found in the importance of evaluation of pain. Conclusions Outcome assessment in the domains "Activities and participation" and "Environmental factors" was rated as important by both PPs and HCPs. Evaluation of pain was more often scored as important by PPs. Different domains seem to be underestimated by HCPs and need more attention during consultation. Show less
Leeuwen, R.B. van; Schermer, T.R.; Colijn, C.; Bruintjes, T.D. 2021
Background: People with dizziness may experience driving-related limitations. Few data are available about the impact of dizziness on driving. Aim: The aim of this study is to investigate the... Show moreBackground: People with dizziness may experience driving-related limitations. Few data are available about the impact of dizziness on driving. Aim: The aim of this study is to investigate the impact of dizziness on driving, factors related to impairment (age, gender, and type of diagnosis), and the potential consequences for patients' ability to work. We also investigated whether the patients expected and actually received information about their dizziness-related fitness to drive from their physician. Methods: A cross-sectional, observational study was conducted in the Apeldoorn Dizziness Centre, a tertiary care referral centre for patients with dizziness. A consecutive cohort of patients was asked to complete a study-specific questionnaire about driving. Results: Between January 1, 2020, and December 20, 2020, 432 patients were included. Fifty-six percent of the patients in this group were female. The average age of patients was 58.3 years (SD 16). Overall, 191 of the 432 patients (44%) experienced limitations related to driving, and 40% of the patients who experienced limitations also experienced limitations to work related to their inability to drive. The subject of fitness to drive had not been discussed with their physician in 92% of the patients, and 24% of the whole patient group indicated that they would have liked to discuss this topic. The following factors, independently from each other, increased the chance of experiencing driving-related limitations: younger age, female sex, and the diagnosis of Meniere's disease. Conclusion: Dizzy patients, especially younger patients, women, and patients with Meniere's disease, regularly experience limitations related to driving, and this often means that they are unable to work. Driving is hardly ever discussed during a medical consultation. In our opinion, the topic of driving and dizziness should always be addressed during medical consultations in dizzy patients. Show less
Objectives. To examine the treatment decision-making process of patients with dcSSc in the context of haematopoietic stem cell transplantation (HSCT).Methods. A qualitative semi-structured... Show moreObjectives. To examine the treatment decision-making process of patients with dcSSc in the context of haematopoietic stem cell transplantation (HSCT).Methods. A qualitative semi-structured interview study was done in patients before or after HSCT, or patients who chose another treatment than HSCT. Thematic analysis was used. Shared decision-making (SDM) was assessed with the 9-item Shared Decision Making Questionnaire (SDM-Q-9).Results. Twenty-five patients [16 male/nine female, median age 47 (range 27-68) years] were interviewed: five pre-HSCT, 16 post-HSCT and four following other treatment. Whereas the SDM-Q-9 showed the decision-making process was perceived as shared [median score 81/100 (range 49-100)], we learned from the interviews that the decision was predominantly made by the rheumatologist, and patients were often steered towards a treatment option. Strong guidance of the rheumatologist was appreciated because of a lack of accessible, reliable and SSc-specific information, due to the approach of the decision-making process of the rheumatologist, the large consequence of the decision and the trust in their doctor. Expectations of outcomes and risks also differed between patients. Furthermore, more than half of patients felt they had no choice but to go for HSCT, due to rapid deterioration of health and the perception of HSCT as 'the holy grail'.Conclusion. This is the first study that provides insight into the decision-making process in dcSSc. This process is negatively impacted by a lack of disease-specific education about treatment options. Additionally, we recommend exploring patients' preferences and understanding of the illness to optimally guide decision-making and to provide tailor-made information. Show less
Kuipers, E.; Wensing, M.; Smet, P.A.G.M. de; Teichert, M. 2020
Background: Treatment of obstructive lung disease with inhalation therapy needs changes in patient behavior. Shortly after the start with inhaled corticosteroids (ICS) maintenance therapy, patients... Show moreBackground: Treatment of obstructive lung disease with inhalation therapy needs changes in patient behavior. Shortly after the start with inhaled corticosteroids (ICS) maintenance therapy, patients might be in need of additional pharmaceutical care, tailored to their individual needs. This study aimed to provide insight into patient behavior, goals and perceptions regarding their medical treatment at start with ICS therapy, by telephone interviews with ICS starters. Besides, this study investigated pharmacists' and patients' experiences with these interviews and opinions on the utility of this type of consultation for daily practice.Methods: Semi-structured telephone interviews were conducted by pharmacists with adult patients 2-3 weeks after starting ICS. The Theoretical Domain Framework (TDF) was used for data analysis and coding. Afterward, the patients and pharmacists were questioned about their experiences with the interview.Results: Five pharmacists conducted interviews with 23 ICS starters. Except the domains "environmental context and resources", "optimism", and "reinforcement", the remaining 11 domains in the TDF were addressed in the interviews. The majority of patients defined personal goals, which mainly addressed disease or symptom control (clinical goals). Some patients showed a lack of knowledge regarding the clinical indication or therapy duration. Views on beneficial medication effects differed between patients. Some patients specifically mentioned concerns or anxiety about side effects. The interviewees described different perceptions on the necessity of a personalized routine for regular medication use. Patients and pharmacists both felt positive about an added value of these interviews for daily practice.Conclusion: Patient interviews shortly after start with ICS therapy revealed various perceptions and beliefs that might influence medication use and achievement of individual treatment goals. The patients appreciated the opportunity to ask questions and share their perspectives and needs with their pharmacist, and the pharmacists experienced that the interviews had added value. Show less
With increasing life expectancy, the incidence and burden of osteoarthritis on society increases. Currently, no treatment for end-stage symptomatic osteoarthritis is available and when symptoms... Show moreWith increasing life expectancy, the incidence and burden of osteoarthritis on society increases. Currently, no treatment for end-stage symptomatic osteoarthritis is available and when symptoms become too severe arthroplasty surgery will be performed, replacing the affected joint with a prosthesis. Although replacement surgery of the hip or knee is safe and commonly performed, up to 20% of the patients are unsatisfied with the outcome. The exact reasons for this dissatisfaction are unknown but may vary from the type of surgical procedure itself, expectancy of the outcome surgery to the patient’s preoperative state of overall metabolic health. We aimed to evaluate some of these aspects related to outcome, from patient perspectives to molecular profiling (e.g. metabolic health). Characteristics of different nature were included: material of prosthesis, physical activity, questionnaires, clinical measures and metabolomics. This holistic approach enables the assessment of more patient specific targets such as advices on treatment modalities. Ultimately, selection of patients, both from a patient’s as well as orthopaedic surgeon’s perspective, will be optimised for the best intervention for the patient. Since osteoarthritis is the major driver for performing arthroplasty, the conclusion of this thesis will spark future studies into OA and its overall effect on disability. Show less
