IntroductionSeizure detection devices (SDDs) may lower the risk of sudden unexpected death in epilepsy (SUDEP) and provide reassurance to people with epilepsy and their relatives. We aimed to... Show moreIntroductionSeizure detection devices (SDDs) may lower the risk of sudden unexpected death in epilepsy (SUDEP) and provide reassurance to people with epilepsy and their relatives. We aimed to explore the perspectives of those receiving secondary care on nocturnal SDDs and epilepsy in general.Materials and methodsWe recruited adults with tonic or tonic-clonic seizures who had at least one nocturnal seizure in the preceding year. We used semi-structured interviews and questionnaires to explore their views on SDDs and their experiences of living with epilepsy. None of the participants had any previous experience with SDDs. We analyzed the data using qualitative content analysis.ResultsEleven participants were included with a nocturnal seizure frequency ranging from once every few weeks to less than once a year. Some participants experienced little burden of disease, whereas others were extremely impaired. Opinions on the perceived benefit of seizure detection varied widely and did not always match the clinical profile. Some participants with high SUDEP risk displayed no interest at all, whereas others with a low risk for unattended seizures displayed a strong interest. Reasons for wanting to use SDDs included providing reassurance, SUDEP prevention, and improving night rest. Reasons for not wanting to use SDDs included not being able to afford it, having to deal with false alarms, not having anyone to act upon the alarms, having a relative that will notice any seizures, not feeling like the epilepsy is severe enough to warrant SDD usage or not trusting the device.ConclusionsThe interest in nocturnal seizure detection varies among participants with low seizure frequencies and does not always match the added value one would expect based on the clinical profile. Further developments should account for the heterogeneity in user groups. Show less
Graaf, J.P. de; Vries, F. de; Dirkson, A.; Hiort, O.; Pereira, A.M.; Korbonits, M.; ... ; Res Sci Work Package Endo-ERN 2021
Purpose European Reference Network on Rare Endocrine Conditions' (Endo-ERN) mission is to reduce and ultimately abolish inequalities in care for patients with rare endocrine conditions in Europe.... Show morePurpose European Reference Network on Rare Endocrine Conditions' (Endo-ERN) mission is to reduce and ultimately abolish inequalities in care for patients with rare endocrine conditions in Europe. This study assesses which themes related to rare endocrine conditions are prioritized by patients for clinical research. Methods A survey was developed, translated into 22 different European languages, and distributed to patients with rare endocrine conditions. Patients were asked to give priority scores to listed prespecified topics: fertility, heritability, tiredness, daily medicine intake, sleep quality, physical discomfort, and ability to work, partake in social life, and sports. They were also asked to suggest further important areas for research in open fields. Results After data cleaning, 1378 survey responses were analyzed. Most responses were received from Northern (47%) and Western Europeans (39%), while Southern (11%) and Eastern Europe (2%) were underrepresented. Respondents were most interested in research concerning ability to participate in social life and work. Patients suggested key areas to work: long-term side effects of medical treatments and quality of life. Some priorities differed between disease groups, both for prespecified and open topics and reflected aspects of patients' individual conditions. Conclusions With this large survey, Endo-ERN gained insight into patients' unmet needs in scientific research. Patients prioritized research on ability to work and participation in social activities, though needs differ between the disease groups. Clinical experts should incorporate the results of this survey into the design of future studies on rare endocrine conditions. We aim to utilize these results in designing patient-reported outcome measures for the disease areas covered by Endo-ERN. Show less
The official installation of the European Reference Networks in 2017 formed the foundation to improve quality and safety and access to highly specialized health care across the EU for patients... Show moreThe official installation of the European Reference Networks in 2017 formed the foundation to improve quality and safety and access to highly specialized health care across the EU for patients affected by rare or low prevalence and complex conditions. The European Reference Network on Rare Endocrine Conditions (Endo-ERN) covers specific expertise from birth to senescence with a specific governance structure characterized by both a pediatric and an adult chair, and equal responsibilities for patient representatives and health care providers. The introduction on the scope and mission of Endo describes the complexity of the Endo-ERN mission and will thrive toward the ultimate aim and mission of the network of reducing health care inequalities across Europe. Specific knowledge and medical expertise of the existing rare endocrine condition is urgently needed, and therefore, raising awareness for Rare Disease Day from the Endo-ERN perspective is imperative. Show less
Objectives Further knowledge about typical hand osteoarthritis (OA) characteristics is needed for the development of new classification criteria for hand OA.Methods In a cross-sectional multi... Show moreObjectives Further knowledge about typical hand osteoarthritis (OA) characteristics is needed for the development of new classification criteria for hand OA.Methods In a cross-sectional multi-centre international study, a convenience sample of patients from primary and secondary/tertiary care with a physician-based hand OA diagnosis (n = 128) were compared with controls with hand complaints due to inflammatory or non-inflammatory conditions (n = 70). We examined whether self-reported, clinical, radiographic and laboratory findings were associated with hand OA using logistic regression analyses. Discrimination between groups was assessed by calculating the area under receiver operating curves (AUC).Results Strong associations with hand OA were observed for radiographic osteophytes (OR = 1.62, 95% CI 1.40 to 1.88) and joint space narrowing (JSN) (OR = 1.57, 95% CI 1.36 to 1.82) in the distal interphalangeal (DIP) joints with excellent discrimination (AUC = 0.82 for both). For osteophytes and JSN, we found acceptable discrimination between groups in the proximal interphalangeal joints (AUC = 0.77 and 0.78, respectively), but poorer discrimination in the first carpometacarpal joints (AUC = 0.67 and 0.63, respectively). Painful DIP joints were associated with hand OA, but were less able to discriminate between groups (AUC = 0.67). Age and family history of OA were positively associated with hand OA, whereas negative associations were found for pain, stiffness and soft tissue swelling in metacarpophalangeal joints, pain and marginal erosions in wrists, longer morning stiffness, inflammatory biomarkers and autoantibodies.Conclusions Differences in symptoms, clinical findings, radiographic changes and laboratory tests were found in patients with hand OA versus controls. Radiographic OA features, especially in DIP joints, were best suited to discriminate between groups. Show less
