Are Patients at the Centre of Care?: A Qualitative Exploration of Myotonic Dystrophy Type 1 (DM1)

Health care for individuals living with myotonic dystrophy (DM1)—an uncommon, life-limiting neurological condition for which there are few treatments—may be challenged by patients’ symptoms including cognitive and behavioral impairments. Is patient-centered care—which incorporates the values, experiences and expertise of patients and their caregivers—feasible or achievable? Uncovering patients’ and their caregivers’ experiences of living with DM1, their health care expectations, and their health care providers’ (HCP) perspectives about care is essential for examining patient-centered care in this population. Therefore, the purpose of this research is to: (1) add patients’ and caregivers’ voices to the literature, (2) explore on-going care provision for individuals with DM1, and (3) probe whether patients’ and caregivers’ needs are being met. Forty-eight participants were purposively sampled from one academic centre in Ontario, Canada to participate in three studies. Phenomenology, photovoice and grounded theory—qualitative methodologies that prioritize participants’ experiences and recognize that researchers and participants co-construct the data—were used to explore patients’, caregivers’ and HCPs’ experiences about living with — or caring for individuals—with DM1. Semi-structured interviews were the primary data collection method; focus groups and photographs were also used in the photovoice study. Data analysis varied by methodology. Patient and caregiver participants’ described that DM1 symptoms—particularly fatigue and weakness— impacted their daily activities and sense of self; however, participants were resilient and problem-solved coping strategies. Patient and caregiver participants’ motivations for clinic attendance evolved along the disease trajectory, but most participants perceived that clinic attendance had tangible benefits. HCPs described that their main role was to provide hope for patients and their families. Most importantly, this research revealed that patient, caregiver and HCP participants described clinic as a ‘safe place’ for patients and caregivers to be understood, and to be empowered to take a proactive role in health care. DM1 participants derived a therapeutic benefit from attending clinic despite providers concerns that patient-centered care was challenged by complex biopsychosocial issues. This research raises questions about whether a physician-led model is the most efficient mode of care provision, or whether other models warrant investigation

Neuropsychological Effects of Pomegranate Supplementation Following Ischemic Stroke

Polyphenols are compounds found in fruits and vegetables that have antioxidant and anti-inflammatory properties. Mounting evidence suggests that dietary polyphenol intake can reduce the detrimental effects of various disease processes, and pomegranates have frequently been examined because of their particularly high polyphenol content. Since stroke induces both oxidative stress and inflammation and is currently the leading cause of long-term disability in the U.S., we sought to determine whether dietary supplementation with polyphenols could enhance cognitive recovery in individuals who had suffered an ischemic stroke. We administered polyphenols via 2 POMx pills containing polyphenols derived from pomegranates equivalent to the content of approximately 8 ounces of pomegranate juice, or placebo pills (capsules containing no polyphenol ingredients), every day for one week to inpatients who were in the acute post-stroke phase. Neuropsychological testing pre- and post-treatment was used to determine whether there were any changes in cognitive functioning as a result of pomegranate supplementation. Results trended toward subtle improvements in cognitive abilities in pomegranate-treated subjects compared to placebo-controlled subjects. Findings from this randomized, placebo-controlled, double-blind clinical trial suggest that pomegranate polyphenols may be effective at enhancing the recovery of cognitive functioning after ischemic stroke, although studies with larger sample sizes and longer treatment durations are needed to make any conclusions regarding these potential effects

【研究分野別】シーズ集 [英語版]

[英語版

Evaluating the impact of Attention Process Training (APT) on attention deficit in the early stages of recovery from stroke

Attention deficits are a prominent sequel of stroke and impact negatively on rehabilitation outcomes. However, rehabilitation efforts are almost entirely concerned with the remediation of physical impairments that result from the stroke despite the involvement of attention in physical functioning. Attention Process Training (APT) is a cognitive retraining programme originally designed for the remediation of attention deficit following traumatic brain injury. However, the efficacy of APT post-stroke is not yet known, as to date, few studies have been conducted with small sample sizes. This study evaluated the effectiveness of APT in improving attention in stroke survivors within the 5 to 8 week period post-stroke. Seventy eight patients admitted to hospital with first-ever-stroke were identified as having an attention deficit by obtaining a score of 1 standard deviation below the normative mean on any of the following widely-used neuropsychological measures of attention; the Auditory Attention Quotient (AAQ) or Visual Attention Quotient (VAQ) of the Integrated Visual and Auditory Continuous Performance Test, (IVA-CPT), either trial of the Trail Making Test (TMT), the Paced Auditory Serial Addition Test (PASAT), or by 3 or more errors made on the left or right side of the Bells Cancellation Test. These measures were re-administered on completion of treatment. Participants were randomised to either the experimental group who received standard care and up to 30 hours of APT or to a control group that received standard care only. The primary outcome measure was the Full Scale Attention Quotient (FSAQ) of the IVA-CPT which is a measure of attention derived from both auditory and visual attention quotients. The secondary outcome measure was a health-related quality of life measure, the SF-36, (Short-Form-36). Both measures were administered before treatment and again on the completion of treatment. The results showed that on the primary outcome, the APT group showed improvement from baseline to post-treatment whereas the SC group had not. Significant improvement by the APT group was also demonstrated on two other measures of the IVA-CPT including the Auditory Attention Quotient and the Full Scale Response Quotient (a measure of impulsivity). On the quality of life measure neither the APT group nor the SC group demonstrated a significant change in scores. The results of this study provide further support for the efficacy of cognitive rehabilitation and in particular that APT is an effective cognitive treatment option for the remediation of attention deficit in the early stages of stroke recovery. The characteristics of stroke survivors who might benefit most from APT are identified as well as those factors that possibly influence the subjective experience of this particular intervention. The appropriateness of some measures such as the PASAT, the TMT, cancellation tests as well as continuous performance tests that are often used in research of attention deficit, are also discussed in the context of a stroke population. It is hopeful that the optimistic outcomes of this study will encourage further needed research in this area in order to inform stroke rehabilitation specialists to incorporate cognitive rehabilitation into predominantly physically-focussed programmes

Noninvasive Dynamic Characterization of Swallowing Kinematics and Impairments in High Resolution Cervical Auscultation via Deep Learning

Swallowing is a complex sensorimotor activity by which food and liquids are transferred from the oral cavity to the stomach. Swallowing requires the coordination between multiple subsystems which makes it subject to impairment secondary to a variety of medical or surgically related conditions. Dysphagia refers to any swallowing disorder and is common in patients with head and neck cancer and neurological conditions such as stroke. Dysphagia affects nearly 9 million adults and causes death for more than 60,000 yearly in the US. In this research, we utilize advanced signal processing techniques with sensor technology and deep learning methods to develop a noninvasive and widely available tool for the evaluation and diagnosis of swallowing problems. We investigate the use of modern spectral estimation methods in addition to convolutional recurrent neural networks to demarcate and localize the important swallowing physiological events that contribute to airway protection solely based on signals collected from non-invasive sensors attached to the anterior neck. These events include the full swallowing activity, upper esophageal sphincter opening duration and maximal opening diameter, and aspiration. We believe that combining sensor technology and state of the art deep learning architectures specialized in time series analysis, will help achieve great advances for dysphagia detection and management in terms of non-invasiveness, portability, and availability. Like never before, such advances will enable patients to get continuous feedback about their swallowing out of standard clinical care setting which will extremely facilitate their daily activities and enhance the quality of their lives

Innovative Evidence-Based Assessment and Treatment of Oropharyngeal Dysphagia and Communication Disorders in Infants and Young Children at High Risk of Cerebral Palsy

Infants with cerebral palsy (CP) have concomitant feeding and communication disorders with lifelong detrimental consequences, including premature death. Early detection and intervention for these deficits is under-researched. This thesis investigates evidence, current practice, innovative assessment, and novel intervention for these domains. To critically appraise evidence for all interventions for children with CP, a large-scale systematic review was conducted. There is high level evidence to support the use of electrical stimulation alongside oral sensory motor interventions, and Functional Chewing Training. Low positive evidence exists supporting direct intervention for literacy, parent training and augmentative alternative communication for language and communication disorders. An international survey of dysphagia practice revealed lack of alignment with evidence, with few patients receiving gold standard assessments, adaptation over direct treatment, and children receiving less-intensive treatment than adults. Ultrasound and Fibreoptic Endoscopic Evaluation of Swallowing were piloted as novel instrumental assessments of OPD in infants with CP. These tools show promise for safe early detection of OPD and warrant more research to establish psychometrics. A second systematic review was undertaken to determine evidence for OPD interventions specifically for infants with CP. Results found that neuroplasticity and motor learning-based interventions are most promising. The Baby Intensive Early Active Treatment (BabiEAT) program was then designed to harness plasticity and was tested against standard care in a pilot randomised control trial. Results showed that BabiEAT was feasible and acceptable, and conferred superior gains in feeding and parental quality of life while maintaining health and safety. To limit preventable death and optimise outcomes, speech pathologists must keep abreast of evidence, upskill, and implement new successful approaches

MSUM Student Academic Conference

Minnesota State University Moorhead Student Academic Conference abstract book.https://red.mnstate.edu/sac-book/1013/thumbnail.jp

Graduate Catalogue 2003-2004

https://scholarship.shu.edu/graduate_catalogues/1006/thumbnail.jp