A whole year of spiritual care in times of crisis

Until recently, disaster chaplaincy research lacked data collected during a crisis in the Netherlands. As of March 2020, however, we have been able to follow spiritual counselors in various fields of work through mixed methods on a modest scale. By repeatedly questioning what chaplains see and do at different points in time, what moral questions they identify and how they themselves receive support, a more detailed overview emerges. A good organizational embedding proves crucial. In addition, reflection and reorientation on the profession itself is necessary to be able to sustain the work in these challenging circumstances. More in detail:How do spiritual carers deal with this crisis? Within the space available to them, they constantly adapted to what was happening and what was possible. They applied their expertise to creative forms of human nearness, rituals, staff support and ethics. New activities included digital forms of contact, different kinds of care for staff members and dealing with physical distance. Alongside the initial fear and uncertainty, a wave of creativity became visible. Healthcare protocols gradually became available, but it also became clear that a long haul was required. Tiredness and work pressure led to some people dropping out and switching back, while others continued their care. We recognize this reaction pattern in other disasters (De Kraker-Zijlstra, Muthert, Zock & Walton, 2021). Four moral themes stood out. In addition to the tension between 'distance and nearness', these are 'risks of contamination for the other person, him/herself and the environment'; 'the human dimension in care under extreme conditions' and 'considerations regarding triage and vaccination'. Proper functioning in a disaster requires first of all adequate organizational embedding in advance. In addition, cooperation with other disciplines and own team members helps. Recognition and appreciation seem crucial. Creativity, flexibility and a proactive attitude are frequently mentioned by respondents; more reflective qualities seem to be equally in demand. Not every person has all that ready. Well-tuned support therefore takes account of these differences. Finally, the professional association is expected to provide good information and sometimes also personal support

Clinical and economic comparison of an individualised immunoglobulin protocol vs. standard dosing for chronic inflammatory demyelinating polyneuropathy

Background The clinical and economic implications of an individualised intravenous immunoglobulin (IVIg) protocol for chronic inflammatory demyelinating polyneuropathy (CIDP) are unknown. Comparison with standard dosing regimens has not been performed. Methods We retrospectively studied 47 IVIg-treated subjects with CIDP over 4 years with an individualised, outcome-measured, dose-modifying protocol. We evaluated responder and remission rates, clinical improvement levels and dose requirements. We compared clinical benefits and costs with those reported with standard dosing at 1 g/kg every 3 weeks. Results The IVIg-responder rate was 83% and the 4-year remission rate was 25.6%. Mean IVIg dose requirements were 22.06 g/week (SD:15.29) in patients on ongoing therapy. Dose range was wide (5.83–80 g/week). Mean infusion frequency was every 4.34 weeks (SD:1.70) and infusion duration of 2.79 days (SD:1.15). Mean Overall Neuropathy Limitation Scale improvement was 2.54 (SD:1.89) and mean MRC sum score improvement of 12.23 (SD:7.17) in IVIg-responders. Mean modified-INCAT (Inflammatory Neuropathy Cause and Treatment) score improvement was similar (p = 0.47) and mean MRC sum score improvement greater (p < 0.001) in our cohort, compared to the IVIg-treated arm of the ICE Study. Mean drug costs were GBP 37,660/patient/year (€ 43,309) and mean infusion-related costs of GBP 17,115/patient/year (€ 19,682), totalling GBP 54,775/patient/year (€ 62,991). Compared to standard dosing using recorded weight, mean savings were of GBP 13,506/patient/year (€ 15,532). Compared to standard dosing using dosing weight, savings were of GBP 6,506/patient/year (€ 7,482). Conclusion Our results indicate that an individualised IVIg treatment protocol is clinically non-inferior and 10–25% more cost-effective than standard dosing regimens in CIDP

Advances and Insights into Neurological Practice 2016-17

Papers published by the European Journal of Neurology reflect the broad interest of practicing neurologists in advances in the aetiology, diagnosis and management of neurological disorders. As a general journal, the proportion of papers in the different subject areas reasonably reflects the case load of a practising neurologist. Stroke represents the largest proportion of papers published, including those on pathophysiology (1-23), acute stroke management (24-47) and the outcome of patients who have suffered stroke (48-72). This article is protected by copyright. All rights reserved