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Supplemental material, sj-docx-1-pmj-10.1177_0269216321999962 for Mutual support between patients and family caregivers in palliative care: A systematic review and narrative synthesis by Rachel McCauley, Regina McQuillan, Karen Ryan and Geraldine Foley in Palliative Medicine

Anne Hogden,1 Geraldine Foley,2 Robert D Henderson,3 Natalie James,4 Samar M Aoun5 1Australian Institute of Health Innovation, Macquarie University, Sydney, NSW, Australia; 2Discipline of Occupational Therapy, School of Medicine, Trinity College Dublin, the University of Dublin, Republic of Ireland; 3Neurology, Royal Brisbane & Women’s Hospital, Brisbane, QLD, 4Motor Neurone Disease (MND) Service, Communication and Assistive Technology (CAT) Clinic, St Joseph’s Hospital, St Vincent’s Health Network, Sydney, NSW, 5School of Nursing, Midwifery and Paramedicine, Faculty of Health Sciences, Curtin University, Perth, WA, Australia Abstract: Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease, leading to death within an average of 2–3 years. A cure is yet to be found, and a single disease-modifying treatment has had a modest effect in slowing disease progression. Specialized multidisciplinary ALS care has been shown to extend survival and improve patients’ quality of life, by providing coordinated interprofessional care that seeks to address the complex needs of this patient group. This review examines the nature of specialized multidisciplinary care in ALS and draws on a broad range of evidence that has shaped current practice. The authors explain how multidisciplinary ALS care is delivered. The existing models of care, the role of palliative care within multidisciplinary ALS care, and the costs of formal and informal care are examined. Critical issues of ALS care are then discussed in the context of the support rendered by multidisciplinary-based care. The authors situate the patient and family as key stakeholders and decision makers in the multidisciplinary care network. Finally, the current challenges to the delivery of coordinated interprofessional care in ALS are explored, and the future of coordinated interprofessional care for people with ALS and their family caregivers is considered. Keywords: quality of life, interdisciplinary, interprofessional, palliative care, care coordination, motor neuron disease

This study evaluates the GV100 pilot – a timed, on-campus, invigilated, formative exam at LSE led by Learning Technology and Innovation (LTI) and the Department of Government. The pilot required that students use their own computers and further incorporated a self and peer review process that took place subsequent to the exam. This study investigates how students’ reflections of their own work, combined with the peer review process based on specific marking criteria may affect performance. It additionally captures evidence on how best to facilitate the development of assessment and feedback with technology practices at LSE. The GV100 pilot was carried out in formative assessment context and provided an opportunity to test the Exam4 and Moodle-TII PeerMark software. Moreover, the pilot allowed academic and academic support staff to examine the effect of self-reflection and peer-review processes on learning and performance outcomes. Finally, the GV100 pilot offered an opportunity to reconsider and adapt existing evaluation frameworks and relatedly, placed a new and concentrated emphasis on feedback. The findings highlighted a general appreciation for peer-assessment practice as a process via which students could get a broader view of topics covered while further contextualizing their own work in relation to their peers. This seemed to allow students to get a better sense of standards and criterion of quality. With regards to typing versus handwriting exams, students displayed a general willingness to engage with typed exams but the views in this regard were mixed. Some students for example, felt that handwriting invoked a more critical thought-process and led to a more clarified focus on analysis. From a technical perspective, the Exam4 software fulfilled its purpose and proved easy to navigate; the Moodle-TII PeerMark feature in contrast, was not a reliable feature. The pilot also highlighted the importance of ensuring appropriate exam spaces for invigilated e-assessment; WiFi capabilities and power sockets must be available to ensure technical issues are mitigated. This report details the views of the teacher and students involved with the GV100 pilot while further providing the views and experiences of LTI staff involved.

This study provides a preliminary overview of the impetus and outcomes of the LSE100 change in assessment structure. While initially evaluating student performance based on a heavily weighted final exam, LSE100 now consists of an e-portfolio assessment method that is structured to support and incentivize ongoing student learning. Based on the feedback of LSE100 teachers and administrative staff, the findings affirm the pedagogical merit of e-portfolios in driving student learning and performance. Overall, teachers suggest there are visible differences in the clarity, cohesiveness, and depth of student work when under an e-portfolio versus exam method of assessment. However, the findings highlight a number of areas for future consideration. Given LSE100 is unique in its size (with upwards of 1500 students registered at any given time), a number of process changes with regards to marking are required. Striking a balance between creativity on the part of teachers while ensuring consistency across cohorts is for example, a challenge with a course of this nature. From a technical perspective, the course evaluation has highlighted the necessity to invest in portfolio specific software (as an ideal alternative) or significantly adapt existing systems to accommodate multiple teachers and a much larger volume of student work being submitted at any given time. Overall however, the success of the LSE100 change in assessment structure is clear; it is no longer an assessment for the sake of an assessment but rather, an assessment structured to support and drive student learning.