Healthcare decision making in motor neurone disease (MND) focuses on symptom management and quality of life. Decision making may be affected by personal approach to receiving information, decision ...making style, and disease symptoms. This study explored decision making from the perspectives of people living with motor neurone disease (plwMND). The issues impacting engagement and involvement in healthcare decisions were investigated.
Semi-structured interviews were conducted with 19 plwMND and 15 carers. Interview data was inductively analysed to identify and describe patterns and themes.
Data analysis identified six overarching themes: Dimensions of decision making; Window of opportunity for choice; Intrinsic influences on decision making; Extrinsic influences impacting decision making; Planning in uncertainty; and, Communication is core. Many participants did not identify a process of "decision-making" except if considering early gastrostomy placement. Information provision requires a balance between ensuring patients are informed but not overwhelmed. Communication impairment impacts involvement. Healthcare professionals' communication style influences engagement in decision making.
PlwMND perceive a lack of clinical decisions to make because disease symptoms and clinical phenotypes dictate necessary interventions. PlwMND describe communication impairment as a barrier to involvement in decision making and extra support is required to ensure they maintain engagement.
IMPLICATIONS FOR REHABILITATION
People living with MND (plwMND) perceive they have few clinical decisions to make and viewed this process as "accepting a recommendation", rather than "making a decision" although early gastrostomy placement is the exception with considerable deliberation evident.
Specialist multidisciplinary clinic advice is especially helpful for plwMND without dysphagia (swallowing problems) when considering early gastrostomy placement.
Communication impairment may be a barrier to involvement in healthcare decisions and extra support to remain engaged is required.
Some plwMND choose not to involve others in their decisions, and patients/families with medical or scientific backgrounds are more likely to collaborate with each other outside the context of clinic appointments.
We sought to define the significance of brachial amyotrophic diplegia (flail arm syndrome FA) and the pseudopolyneuritic variant (flail leg syndrome FL) of amyotrophic lateral sclerosis (ALS; motor ...neuron disease).
We analyzed survival in clinic cohorts in London, UK (1,188 cases), and Melbourne, Australia (432 cases). Survival from disease onset was analyzed using the Kaplan- Meier method and Cox proportional hazards model.
In the London cohort, the FA syndrome represented 11% and the FL syndrome 6% of the sample. Median survival was 35 months for limb onset and 27 months for bulbar onset ALS, whereas this was 61 months for FA syndrome (p < 0.001) and 69 months for FL syndrome (p < 0.001). Five-year survival in this cohort was 8.8% for bulbar onset, 20% for limb onset, 52% for FA syndrome, and 64% for FL syndrome. The ratio of men to women was 4:1 in the FA group compared to 2:1 in other limb onset cases. Excluding lower motor neuron FA and FL cases, progressive muscular atrophy comprised 4% of the sample and had a prognosis similar to typical limb onset ALS. In the Melbourne cohort, median survival for limb onset ALS was 31 months, bulbar onset 27 months, FA syndrome 66 months (p < 0.001), and FL syndrome 71 months (p = 0.001).
The flail arm (FA) and flail leg (FL) syndromes had significantly better survival than typical amyotrophic lateral sclerosis (ALS) or progressive muscular atrophy cases that were not classified as FA or FL. Our findings underline the clinical and prognostic importance of the FA and FL variants of ALS.
Taping is a common treatment modality used by many rehabilitation providers. Several types of tapes and taping methods are used in the treatment of musculoskeletal dysfunction and pain.
To summarize ...and map the evidence related to taping methods used for various joints and conditions of the musculoskeletal system, and to provide clinicians and researchers with a user-friendly reference with organized evidence tables.
The PEDro, CINAHL, Cochrane Database of Systematic Reviews, Cochrane Central Register for Controlled Trials, PubMed, and PROSPERO databases were searched from inception through October 31, 2019.
Eligible studies were selected by two independent reviewers and included either systematic reviews (SRs) or randomized controlled trials (RCTs) and included a musculoskeletal complaint using a clinical outcome measure.
Data was extracted by two investigators independently. Risk of bias and quality were assessed using A MeaSurement Tool to Assess systematic Reviews (AMSTAR) for SRs or the Physiotherapy Evidence Database (PEDro) scale for RCTs. The protocol was registered with PROSPERO (CRD42019122857).
Twenty-five musculoskeletal conditions were summarized from forty-one SRs and 127 RCTs. There were 6 SRs and 49 RCTs for spinal conditions. Kinesio tape was the most common type of tape considered. Four evidence tables representing the synthesized SRs and RCTs were produced and organized by body region per condition.
Inclusion of only English language studies. Also, the heterogeneous nature of the included studies prevented a meta-analysis.
There is mixed quality evidence of effectiveness for the different types of taping methods for different body regions and conditions. All of the SRs and RCTs found during our search of the taping literature have been organized into a series of appendices. A synthesis of the results have been placed in evidence tables that may serve as a useful guide to clinicians and researchers.
Reactivation of Human Endogenous Retrovirus K (HERV-K), subtype HML-2, has been associated with pathophysiology of amyotrophic lateral sclerosis (ALS). We aimed to assess the efficacy of ...antiretroviral therapy in inhibiting HML-2 in patients with ALS and a possible association between the change in HML-2 levels and clinical outcomes. We studied the effect of 24-weeks antiretroviral combination therapy with abacavir, lamivudine, and dolutegravir on HML-2 levels in 29 ALS patients. HML-2 levels decreased progressively over 24 weeks (P = 0.001) and rebounded within a week of stopping medications (P = 0.02). The majority of participants (82%), defined as “responders”, experienced a decrease in HML-2 at week 24 of treatment compared to the pre-treatment levels. Differences in the evolution of some of the clinical outcomes could be seen between responders and non-responders: FVC decreased 23.69% (SE = 11.34) in non-responders and 12.71% (SE = 8.28) in responders. NPI score decreased 91.95% (SE = 6.32) in non-responders and 53.05% (SE = 10.06) in responders (P = 0.01). Thus, participants with a virological response to treatment showed a trend for slower progression of the illness. These findings further support the possible involvement of HML-2 in the clinical course of the disease.
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•Antiretroviral therapy for 24 weeks decreased HERV-K (HML-2) levels in most patients with ALS.•A rebound in HML-2 levels occurred after discontinuation of the antiretroviral drugs.•Patients that had an antiviral effect against HML-2 showed a trend for slower progression in several clinical parameters.
Abstract Introduction The development of diagnostic imaging services manifests features specific to the Scottish environment, in particular development of the radiographic workforce through ...implementing skills mix and role developments to enhance outcomes for patients. A component of a College of Radiographers Industry Partnership Scheme (CoRIPS) supported study, this research investigates perspectives of strategic service managers with Health Board responsibility for service delivery. Method A questionnaire survey was administered to strategic service managers across Scotland ( N = 14), followed up with telephone interviews. There was a return rate of 57% ( n = 8) for the questionnaires and n = 4 agreed to be interviewed. Data collected related to radiographer roles across their Board area; awareness and understanding of service development issues and features as well as perspective on opportunities and barriers in the context of Scottish Government policy, workforce logistics, attitudes and inter-professional relationships. Results The results indicate evidence of financial, logistical and political barriers to service evolution, offset by a sense of optimism that scope for beneficial change may be approaching. There are a range of significant initiatives in place and an appetite exists to pursue the development of radiographer roles and skill mix for the benefit of service users more generally. Conclusion The difficulties in achieving change are well understood and there are basic issues related to finance and industrial relations. There are also however, cultural elements to contend with in the form of attitudes demonstrated by some radiographers and significantly, the radiological community whose influence on the practice of independently regulated radiographers seems incongruent.
We conducted a designed experiment to quantify sources of uncertainty in geologists' interpretations of a geological cross section. A group of 28 geologists participated in the experiment. Each ...interpreted borehole record included up to three Palaeogene bedrock units, including the target unit for the experiment: the London Clay. The set of boreholes was divided into batches from which validation boreholes had been withheld; as a result, we obtained 129 point comparisons between the interpreted elevation of the base of the London Clay and its observed elevation in a borehole not used for that particular interpretation. Analysis of the results showed good general agreement between the observed and interpreted elevations, with no evidence of systematic bias. Between-site variation of the interpretation error was spatially correlated, and the variance appeared to be stationary. The between-geologist component of variance was smaller overall, and depended on the distance to the nearest borehole. There was also evidence that the between-geologist variance depends on the degree of experience of the individual. We used the statistical model of interpretation error to compute confidence intervals for any one interpretation of the base of the London Clay on the cross section, and to provide uncertainty measures for decision support in a hypothetical route-planning process. The statistical model could also be used to quantify error propagation in a full 3-D geological model produced from interpreted cross sections.
We have studied the pelvic floor musculature and its innervation in 14 of 24 (58 per cent) multiparous women who had been recruited into a study of the effect of childbirth on the pelvic floor as ...part of a prospective investigation that began in 1983. These 24 women had all delivered by the vaginal route without forceps assistance. Five of the 14 had developed clinical symptoms of stress incontinence 5 years later; two of them had had a further uncomplicated vaginal delivery during this time. There was manometric and neurophysiological evidence of weakness because of partial denervation of the pelvic floor striated sphincter musculature, with pudendal neuropathy, which was more marked in those women with incontinence. These findings provide direct evidence for the hypothesis that pudendal neuropathy due to vaginal delivery persists and may worsen with time.
In 2011, the British Geological Survey (BGS) decided to begin the assembly of a National Geological Model (NGM) from its existing and on‐going geological framework models comprising integrated ...national crustal, bedrock, and Quaternary models. The bedrock component is the most advanced of these themes and comprises both the calculated models and a complementary network of cross sections that provide a fence diagram for the bedrock geology of Great Britain. This fence diagram, the GB3D_v2012 dataset, is the subject of this article and is available in a variety of formats from the BGS website (www.bgs.ac.uk) as free downloads. It complements the existing 1:625 000 scale map sheets published by BGS utilizing the same colour schema and geological classification. The 121 component cross sections extend to depths between 1.5 and 6 km; they have an aggregate length of over 20 000 km, and they are snapped together at their intersections to ensure total consistency. The sections are guided by the existing BGS geological framework models where they cut through them; they also take account of the vast wealth of published data on the subsurface structure of Britain both from BGS and in the literature. Much of this is in the form of cross sections, contour maps of surfaces, and thicknesses (isopachs). The fence diagram has been built in the Geological Surveying and Investigation in 3D (GSI3D) software. Utilizing the cross sections and the coverages of the geological units simple 3D volumes can be calculated for the less deformed sedimentary strata. It is envisaged that this dataset will form a useful educational resource for geoscience students and the general public, and also provide the bedrock geology context and structure for regional and catchment scale studies.
Entrustable professional activities (EPAs) have seen widespread adoption in medical education and other health professions education. EPAs aim to provide a bridge between competency-based education ...and clinical practice by translating competencies into fundamental profession-specific tasks associated with clinical practice. Despite the extensive use of EPAs in health professions education, EPAs have yet to be introduced into chiropractic education. The purpose of this paper is to describe the development and introduction of EPAs as part of 2 community-based chiropractic student preceptorship education programs in the United States.
EPAs were developed and introduced at 2 community-based chiropractic preceptorship sites in 5 distinct steps: (1) differentiating EPAs from competencies, learning objectives, and knowledge, skills, and attitudes; (2) identifying EPAs; (3) mapping EPAs to competencies and necessary experience, knowledge, and skills; (4) designing EPA assessment strategies; and (5) implementing the use of EPAs.
A total of 13 individual EPAs were developed and mapped to Council on Chiropractic Education meta-competency outcomes and underlying experience, knowledge, and skills. Three assessment tools were created to evaluate student entrustability for EPAs and enhance student self-assessment. The EPAs and assessment tools were integrated into chiropractic student preceptorships at each site.
This paper describes the development and introduction of EPAs at 2 community-based chiropractic preceptorship sites. Future research is needed to develop and standardize EPA use and assessment, and to evaluate outcomes associated with EPA use.
Pluto and its main satellite, Charon, occulted the same star on 2008 June 22. This event was observed from Australia and La Reunion Island, providing the east and north Charon Plutocentric offset in ...the sky plane (J2000): X= + 12,070.5 ? 4 km (+ 546.2 ? 0.2 mas), Y= + 4,576.3 ? 24 km (+ 207.1 ? 1.1 mas) at 19:20:33.82 UT on Earth, corresponding to JD 2454640.129964 at Pluto. This yields Charon's true longitude L= 153.483 ? 0071 in the satellite orbital plane (counted from the ascending node on J2000 mean equator) and orbital radius r= 19,564 ? 14 km at that time. We compare this position to that predicted by (1) the orbital solution of Tholen & Buie (the 'TB97' solution), (2) the PLU017 Charon ephemeris, and (3) the solution of Tholen et al. (the 'T08' solution). We conclude that (1) our result rules out solution TB97, (2) our position agrees with PLU017, with differences of Delta *DL= + 0.073 ? 0071 in longitude, and Delta *Dr= + 0.6 ? 14 km in radius, and (3) while the difference with the T08 ephemeris amounts to only Delta *DL= 0.033 ? 0071 in longitude, it exhibits a significant radial discrepancy of Delta *Dr= 61.3 ? 14 km. We discuss this difference in terms of a possible image scale relative error of 3.35 X 10--3in the 2002-2003 Hubble Space Telescope images upon which the T08 solution is mostly based. Rescaling the T08 Charon semi-major axis, a = 19, 570.45 km, to the TB97 value, a = 19636 km, all other orbital elements remaining the same ('T08/TB97' solution), we reconcile our position with the re-scaled solution by better than 12 km (or 0.55 mas) for Charon's position in its orbital plane, thus making T08/TB97 our preferred solution.
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