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Introduction: Neurofibromatosis 1 (NF1) is a chronic neurocutaneous disease known to profoundly affect quality of life (QoL). We have performed an analysis of disease severity, mental and physical QoL and compare the different subclasses among patients with neurofibromatosis 1 (NF1). Patients and methods: We conducted a prospective analysis of 89 NF1 patients between January 2016 and March 2018. Data sourced from local records including demographic information, employment status, education level, and marital status. All patients completed 36-Item Short Form Health Survey (SF-36) and additionally the numerical pain rating scale (NPS). Patients were stratified based on severity of NF1, visibility and disease severity. Results: Among 89 patients, severity was classified as grade 4 was identified in 42 (47.2%), moderate in 17 (19.1%), mild in 23 (25.8%) and minimal in 7 (7.9%) cases. According to visibility scale, severe grade 3 was found in 28 (31.5%), moderate grade 2 in 26 (29.2%) and mild grade in 35 (39.3%) cases. SF-36 data, except for pain, showed significantly lower values, if compared to the standard German population (P < 0.001, physical component summary P = 0.045). Sex, marital status and education level did not significantly influence results. Employment was significantly associated with better mental and physical status (P = 0.028 and P = 0.01 respectively) and age >40 was linked to lower physical (P = 0.027) but not mental component scores (P = 0.362). The numerical pain rating scale indicated pain levels of 7–10 in 9 cases (10,1%), 5–6 in 10 patients (11.2%), 1–4 in 26 patients (29.2%) and no pain in 44 cases (49.4%). Physical component scores significantly differed across different NPS grades (P < 0.001) but not in mental component scores (P = 0.06). Finally, no significant differences were found in mental component scores across severity or visibility grades. Conclusion: Severity and visibility grades of patients with NF1 may not necessarily result in poor mental health. Symptomatic treatment should be considered even for severely disabled patients as they may have comparable QoL to less severely affected patients with NF1. Employment was linked to better quality of life outcomes in our findings. [ABSTRACT FROM AUTHOR]

Background: The use of online information and communication is globally increasing in the healthcare sector. In addition to known benefits in other medical fields, possible specific potentials of eHealth lie in the monitoring of oncological patients undergoing outpatient therapy. Specifically, the treatment with immune checkpoint inhibitors (ICI) requires intensive monitoring due to various possible negative side effects. The present study explores cancer patients' perspectives on eHealth and demonstrates how eHealth applications, from the patients' point of view, can contribute to further improving outpatient immunotherapy. Methods and findings: Our multicenter study was executed at the university hospitals in Bonn and Aachen. A structured questionnaire was distributed to patients receiving outpatient immunotherapy. Contents addressed were (1) the patients' attitude towards eHealth applications, (2) the use of modern information and communications technologies (ICT) in (2a) everyday life and (2b) health-related information search including eHealth literacy, (3) the use of internet-enabled devices as well as (4) socio-demographic data. 164 patients were included in the study, of whom 39.0% were female and 61.0% male and the average age was 62.8 years. Overall, there was a high distribution of internet-enabled devices for everyday use and a great interest in integrating eHealth applications into outpatient immunotherapy. The assessment of eHealth potentials significantly depended on age. The younger participants demonstrated a broader use of modern ICT and a higher affinity for its use in outpatient immunotherapy. In some aspects, level of education and gender were also relevant factors influencing the patients' view on eHealth. Conclusion: This study demonstrates the potential for further integration of eHealth applications into outpatient immunotherapy from the patients' perspective. It indicates a dependency on age and educational level for the further integration of eHealth into patient care in oncology. Due to particular patient needs regarding age, level of education, gender and other subgroups, specific education and training as well as target-group specific digital health interventions are necessary to fully utilize the potentials of eHealth for outpatient immunotherapy. Future studies are required to specifically address target-group specific usability of eHealth applications and eHealth literacy, as well as to address information security and data protection. [ABSTRACT FROM AUTHOR]