Piracy, Policy, and Pandora: Outdated Copyright in a Digital World

This project examines how current copyright laws and digital distribution practices in music can be improved for both the creator and the consumer. The laws that govern our digital atmosphere, and thus a large portion of music distribution, are outdated and cause a wide variety of problems for both artists and fans. To create a comprehensive picture and establish the scope of this problem, I start by outlining the process a song goes through from when it is written to when it is in the hands, or rather ears, of listeners. From there, copyright laws are entwined with this process. It is important to acknowledge copyright was designed as a balance between copyright-holders and the public, not just one party. Next, I examine what problems arise from this series of transactions, such as loss of information and piracy. Many scholars have commented on the inefficiencies of our current legal state, but I seek to connect these problems to evolving solutions that are practical for here and now. How can emerging technologies (such as blockchain) and changes in policy make the process more transparent? I seek to educate readers on the intricacies of copyright, highlight pitfalls of our modern structure, and connect these problems to unfolding solutions

Amyotrophic lateral sclerosis–specific quality of life–short form (ALSSQOL‐SF): A brief, reliable, and valid version of the ALSSQOL‐R

Introduction: The Amyotrophic Lateral Sclerosis (ALS)‐Specific Quality of Life instrument and its revised version (ALSSQOL and ALSSQOL‐R) have strong psychometric properties, and have demonstrated research and clinical utility. In this study we aimed to develop a short form (ALSSQOL‐SF) suitable for limited clinic time and patient stamina. Methods: The ALSSQOL‐SF was created using Item Response Theory and confirmatory factor analysis on 389 patients. A cross‐validation sample of 162 patients assessed convergent, divergent, and construct validity of the ALSSQOL‐SF compared with psychosocial and physical functioning measures. Results: The ALSSQOL‐SF consisted of 20 items. Compared with the ALSSQOL‐R, optimal precision was retained, and completion time was reduced from 15–25 minutes to 2–4 minutes. Psychometric properties for the ALSSQOL‐SF and its subscales were strong. Discussion: The ALSSQOL‐SF is a disease‐specific global QOL instrument that has a short administration time suitable for clinical use, and can provide clinically useful, valid information about persons with ALS. Muscle Nerve 58: 646–654, 2018Peer Reviewedhttps://deepblue.lib.umich.edu/bitstream/2027.42/146574/1/mus26203_am.pdfhttps://deepblue.lib.umich.edu/bitstream/2027.42/146574/2/mus26203.pd

2nd Place Contest Entry: Piracy, Policy, and Pandora: Outdated Copyright in a Digital World

This is Stephanie Caress\u27 submission for the 2018 Kevin and Tam Ross Undergraduate Research Prize, which won second place. She wrote about current copyright laws and digital distribution practices and how they can be improved for creators and consumers of music. Stephanie is a senior at Chapman University, majoring in Music and Strategic & Corporate Communication. Her faculty mentor is Dr. Jessica Sternfeld

Understanding the experience of patients with chronic obstructive pulmonary disease who access specialist palliative care; a qualitative study

Background: Palliative care for people with life-limiting non-malignant disease is increasingly prioritised. People with end-stage chronic obstructive pulmonary disease are among a key group of non-cancer patients likely to benefit from specialist palliative care, but it remains uncertain whether the needs of this group are met by existing services. Aim: To evaluate the experiences of patients with chronic obstructive pulmonary disease who accessed specialist palliative care. Design: Data from semi-structured interviews were analysed using a hermeneutic phenomenological approach. Setting/participants: Eight patients accessing specialist palliative care within one city in North West England. Results: Perceived benefits of specialist palliative care included reduced frequency of hospital admission, improved physical and psychological symptoms, reduced social isolation and a broadened physical environment. Participants were mainly aware of their poor prognosis, but discussion of referral to palliative care sometimes caused distress owing to the historical associations between dying and hospice care. Following engagement with services, participants’ perceptions changed: palliative care was associated with social inclusion and opportunities to engage in reciprocal and altruistic social action. Negative associations were replaced by uncertainty and anxiety about the prospect of discharge. Conclusions: Much within existing services works well for people with chronic obstructive pulmonary disease, but opportunities to enhance palliative care for this underserved group remain. Future research might focus on prospectively evaluating the impact of key components of palliative care on core patient-centred outcomes. Additionally, work must be done to raise awareness of the benefits of specialist palliative care for non-cancer patients, as negative associations can form a barrier to access. </jats:sec

Natural History of Muscle Cramps in Amyotrophic Lateral Sclerosis

Introduction: Muscle cramping is a common symptom in amyotrophic lateral sclerosis (ALS) that lacks efficacious treatment. The natural history of this symptom is unknown, which hampers efforts to design optimal clinical trials. Methods: We surveyed early stage ALS patients about their experience with cramps each month by phone for up to 21 months. Results: Cramps developed in 95% of patients over the course of their disease. The number of cramps experienced by an individual varied widely from month-to-month and trended lower after the first year of illness (P = 0.26). Those with limb-onset and age \u3e60 years had more cramps than bulbar-onset (P \u3c 0.0001) and younger patients (P \u3c 0.0001). Conclusions: The high variability of the number of cramps experienced suggests that clinical trials will need to use crossover designs or large numbers of participants, even when the treatment effect is substantial. Muscle Nerve 53: 513–517, 201

ALS Specific Quality of Life- Short Form (ALSSQOL-SF): A Brief, Reliable and Valid Version of the ALSSQOL-R

INTRODUCTION: The ALS Specific Quality of Life instrument and its revised version (ALSSQOL, ALSSQOL-R) have strong psychometric properties, and have demonstrated research and clinical utility. The current study aimed to develop a short form (ALSSQOL-SF) suitable for limited clinic time and patient stamina. METHODS: The ALSSQOL-SF was created using Item Response Theory and confirmatory factor analysis on 389 patients. A cross-validation sample of 162 patients assessed convergent, divergent, and construct validity of the ALSSQOL-SF compared to psychosocial and physical functioning measures. RESULTS: The ALSSQOL-SF consisted of 20 items. Compared to the ALSSQOL-R, optimal precision was retained, and completion time was reduced from 15-25 minutes to 2-4 minutes. Psychometric properties for the ALSSQOL-SF and its subscales were strong. DISCUSSION: The ALSSQOL-SF is a disease-specific global QOL instrument that has a short administration time suitable for clinical use, and provides clinically useful, valid information about persons with ALS. This article is protected by copyright. All rights reserved