The involvement of palliative care with neurology - a comparison of UK, Switzerland and Italy.

OBJECTIVES: To ascertain the involvement of palliative care with neurology services in the care of people with amyotrophic lateral sclerosis (ALS) in the United Kingdom, Italy and Switzerland, in particular the collaboration with and referral from neurology, the involvement in multidisciplinary team care and in the respiratory support of ALS patients. METHODS: In 2019, two online surveys were undertaken of palliative care specialists, using specialist groups of the European Academy of Neurology, European Association of Palliative Care and the Association of Palliative Medicine for Great Britain and Ireland. RESULTS: The respondents were specialist palliative care professionals, predominantly senior doctors, involved in the care of people with ALS. As the numbers of respondents from many countries were in single figures the analysis was restricted to the United Kingdom, Italy and Switzerland. The time of involvement varied, with early involvement commonest in the UK. Barriers to referral included neurologists not referring and financial issues, particularly in Switzerland. The reluctance of patients and families to see palliative care services was reported as less than 20% in all countries. Respondents were often involved in the care of people receiving noninvasive ventilation (NIV), in all countries. and with tracheostomy ventilation (TV), particularly in Italy. CONCLUSIONS: Palliative care services are often involved in the care of people with ALS, but the extent and timing of involvement varies. The use of clinical guidelines and education on palliative care for neurology services may encourage collaboration, for the benefit of people with ALS and their families.

Is massage an effective intervention in the management of post-operative scarring? A scoping review.

BACKGROUND: Scar massage is a widely used treatment modality in hand therapy. This intervention is thoroughly discussed in the literature relating to burns rehabilitation, however, the evidence for its use in treating linear scars following surgery is limited. PURPOSE OF STUDY: To collate the empirical literature on scar massage for the treatment of postsurgical cutaneous scars. STUDY DESIGN: Scoping review. METHODS: Medline, EMBASE, CINAHL, AMED, Scopus, ProQuest Dissertations & Theses Global, and the Joanna Briggs Institute were searched from inception to December 2020. Two researchers used a data extraction tool to record key demographic, intervention and outcome data, and to apply the Oxford Levels of Evidence for each study. RESULTS: Twenty-five studies met the inclusion criteria, reporting on a combined sample of 1515 participants. Only two papers addressed hand or wrist scars (92 participants). While all studies reported favorable outcomes for scar massage, there were 45 different outcome measures used and a propensity towards non-standardized assessment. Intervention protocols varied from a single session to three treatments daily for 6 months. The results from 13 studies were confounded by the implementation of additional rehabilitation interventions. CONCLUSIONS: The overall findings suggest that while there may be benefits to scar massage in reducing pain, increasing movement and improving scar characteristics; there is a lack of consistent research methods, intervention protocols and outcome measures. This scoping review highlights the heterogenous nature of research into scar massage following surgery and supports the need for further research to substantiate its use in the clinical setting.

Pathogenic NFKB2 variant in the ankyrin repeat domain (R635X) causes a variable antibody deficiency.

Genetic studies are identifying an increasing number of monogenic causes of Common Variable Immunodeficiency (CVID). Pathogenic variants in the C-terminus of NFKB2 have been identified in the subset of CVID patients whose immunodeficiency is associated with ectodermal dysplasia and central adrenal insufficiency. We describe 2 unrelated CVID pedigrees with 4 cases of pathogenic stop gain variants (c.1903C > T) in the ankyrin repeat domain (ARD) of NF-κB2, leading to a premature truncation of the protein at p.Arg635Term (R635X). By immunophenotyping and functional ex vivo B- and T-cell experiments we characterized the variant by reduced class-switched memory B-cell counts and immature plasmablasts, unable to produce IgG and IgA. Features of a poor proliferative T-cell response and reduced expansion of CD4+CXCR5+ T cells was only observed in the two clinically affected index cases without any clear clinical correlate. In conclusion, pathogenic stop variants in the ARD of NFKB2 can cause 'infection-only' CVID with an abnormal B-cell phenotype and a variable clinical penetrance.

E-referrals: improving the routine interspecialty inpatient referral system.

Interspecialty referrals are an essential part of most inpatient stays. With over 130 referrals occurring per week at the Royal Devon and Exeter Hospital, the process must be efficient and safe. The current paper-based 'white card' system was felt to be inefficient, and a Trust incident highlighted patient safety concerns. Questionnaires reinforced the need for improvement, with concerns such as a lack of referral traceability and delays in the referral delivery due to workload. The aims of the project were to improve patient safety and junior doctor efficiency in the referral process. Through appreciative enquiry and the PDSA (Plan-Do-Study-Act) model, an electronic referral system was developed, piloted within two specialties and later expanded to others with improvements made along the way based on user feedback. The system includes novel features including specialties 'acknowledging' a referral to allow referral progress to be tracked. The system stores all referrals, creating a fully auditable inpatient referral pathway. Qualitative data indicated improvement to patient safety and user experience (n=31). Timings for referrals were measured over a 6-month period; referrals became faster with the electronic system, with average time from decision to refer to referral submission improving from 2.1 hours to 1.9 hours, with a noted statistically significant improvement in timings on a statistical process control chart. An unexpected benefit was that patients were also reviewed faster by specialties. Measuring these changes presented a significant challenge due to the complexity of the referral process, and this was a big limitation. Overall, the re-design of a paper-based referral system into an electronic system has been proven to be more efficient and felt to be safer for patients. This is a sustainable change which is being rolled out Trust-wide. We hope that the reporting of this project will help others considering reviewing their inpatient referral pathways.

Implementation of a combined Cardiopulmonary Resuscitation and Treatment Escalation Plan document in a District General Hospital.

Documentation of appropriate escalation of treatment was identified as a problem for junior doctors and Critical Care Outreach Nurses at Musgrove Park Hospital. An audit of resuscitation and escalation documentation of all wards found that of the patients who were not for Cardiopulmonary resuscitation (and therefore not for full escalation of care), 78.4% had no documentation of the appropriate level of escalation of treatment should they deteriorate. The majority of junior doctors had experienced cases where they felt that inappropriate treatment had been given, where no escalation plan was documented. Using several Plan, Do, Study, Act (PDSA) cycles, drawing tools used in other trusts and departments, and the views of clinicians, we developed a treatment escalation plan (TEP) tool, to be included in the resuscitation form. This included consideration of referral to critical care, ward based non-invasive ventilation, and appropriate use of intravenous or oral antibiotics. This then prompted the responsible clinician to consider and document appropriate escalation of treatment. The CPR-TEP form was trialed using a quasi-experiment design allowing the aim to be tested using two groups - intervention and control. All patients in the intervention group were not for CPR and therefore had their TEP-CPR form filled in fully (n=68). The control group consisted of patients who were not for CPR but who did not have a TEP form filled in (n=36). The appropriateness of OOH (out of hours) treatment in those patients who experienced clinical deterioration was judged by questionnaire-based feedback from the in-hours team the following morning. Levels of inappropriate treatment between the two groups were compared to test the aim. At the end of the study period, questionnaire feedback indicated that 11.1% of patients in the group with the new CPR-TEP document had received inappropriate OOH care compared to 44.4% of patients in the group without the document. Using the TEP alongside resuscitation documentation prompts the responsible clinician to consistently consider and document the appropriate escalation of care for their patient, improving communication with the out of hours team and appropriate escalation of care in the event of patient deterioration.