646 research outputs found

    Healthier Living with MS:The Key Role of Self-Efficacy and Emotion Regulation

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    ObjectivesUnderstanding distress and quality of life (QOL) is important in improving the lives of people with multiple sclerosis (MS), and investigating their antecedents is very important. The present study aimed to examine the role of multiple sclerosis self-efficacy and difficulties in emotion regulation in predicting distress and QOL in people with MS. Also, this study compared types of MS (RRMS, PPMS, and SPMS) in terms of MS self-efficacy, difficulties in emotion regulation, distress, and QOL.MethodsThis study included 122 people with three types of MS (RRMS=33, PPMS=62, and SPMS=25). Data were collected by the use of four scales: Quality of Life (QOL), Psychological Distress (DASS), Difficulties in Emotion Regulation (DERS), and Multiple Sclerosis Self-Efficacy (MSSE). Pearson's correlation, path analysis, MANOVA, and Tukey's post hoc test were used for data analysis.ResultsFindings indicated MS self-efficacy had negative and significant effects on difficulties in emotion regulation and distress and had a positive and significant effect on QOL. Difficulties in emotion regulation had a negative and significant effect on QOL and a positive and significant effect on distress. Also, the indirect effect (through difficulties in emotion regulation) of MS self-efficacy on distress and QOL was significant. In addition, the comparisons showed that differences between RRMS and SPMS in terms of MS self-efficacy and distress were significant.ConclusionsSelf-efficacy and emotion regulation are key components in improving the life (reducing distress and increasing QOL) of people with MS, although it depends to some extent on the type of MS disease

    Telemonitoring to optimise care in motor neurone disease: a pilot study

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    Background Advances in telemedicine may benefit patients with motor neurone disease/ amyotrophic lateral sclerosis (MND/ALS). Aims This study aimed to improve care through telemonitoring utilising standardised symptom monitoring, clinical measurements and assessment non-invasive ventilation (NIV) parameters. It was hypothesized that telemonitoring allows proactive intervention allowing symptom management and optimized ventilation indicated by adequate nocturnal SpO2 levels and minute ventilation (MV). Methods 13 ventilated patients (mean age=62yrs; median illness duration=14m; median NIV usage= 8m) were recruited. Previously developed questions monitored symptoms and NIV-related issues, generating alerts and interventions where required. Nocturnal pulse oximetry and the patient-ventilator interaction (PVI) data were collected weekly. A revised ALS functional rating scale (ALSFRS-R) was completed three-monthly. Given the sample size, Friedman's ANOVA and Spearman's correlation coefficient were used for analysis at the baseline, at 3 month, and at 6 month. Results In total, 137 alerts led to 62 interventions (direct review 13, treatment adjustment 14, equipment provision 20, referral 15). Inspiratory positive airway pressure levels were increased median 16.8 and 21.9cmsH20 (Wk1 and 22), NIV adherence also increased over time (both p<.01). No change was observed with nocturnal SpO2 levels. ALSFRS-R scores showed illness deteriorations. No consistent correlations were found between the variables. Conclusions This pilot study found telemonitoring to be beneficial in maintaining ventilation MND despite the illness deterioration

    Endophyte Status in Summer-Dormant Tall Fescue in the Southern Great Plains of USA

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    Non-toxic fungal endophytes provide persistence-related benefits to summer-active, continental-type tall fescue (Festuca arundinacea Schreb.), as well as reduced animal toxicosis compared to toxic endophytes. However, the benefits of fungal endophytes to summer-dormant, Mediterranean-type tall fescue persistence or production are unclear. Summer-dormant tall fescue has potential to replace traditional, annual small grain graze-out systems in the Southern Great Plains region of the USA. This region is characterized by severe water deficits accompanied by extreme heat in summer, and by relatively mild, rainy winters (Malinowski et al. 2009). Summer-active tall fescues are better suited to high rainfall areas (\u3e 900 mm annual average rainfall (AAR)) east of the 97° longitudinal meridian, while summer-dormant tall fescues are best adapted to lower rainfall areas (600 to 900 mm AAR) between the 97° and 99° longitudinal meridian (Butler et al. 2011). The objective of this field study was to determine the effects of the ‘novel’ endophyte strain AR542 on persistence of summer-dormant tall fescue ‘Flecha’ in the Southern Great Plains of the USA. Two field experiments were conducted to evaluate the effect of the novel endophyte AR542 on the survival of Flecha

    Exploring and addressing ‘concerns’ for significant others to extend the understanding of quality of life with motor neurone disease: a qualitative study

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    Background: The absence of curative medication for amyotrophic lateral sclerosis (ALS) makes palliative care and understanding quality of life (QoL) in ALS a clinical priority. Previous qualitative research has explored the concept of QoL in terms of illness impact on life perspectives and sense of self. Objective: In this research we explored ‘concerns’ – one of the four aspects in the World Health Organization’s conceptualisation of QoL – towards adding to the literature. Methods: In-depth interviews with 26 individuals with ALS were subjected to thematic analysis involving both inductive and deductive approaches to explore participant’s concerns, and to evaluate the relevance of their concerns for understanding QoL in ALS. Findings: The analysis showed that concerns for significant others contribute to participant’s QoL because of their existential value. It was important for participants to minimise the impact of limitations and burdens associated with ALS on significant others, even at a cost to self. Discussion: The current study supports a holistic approach in service provision, ensuring the inclusion of relevant significant others. It is further suggested that clinicians explore the specifics of burdens perceived by patients in order to support them in minimising the burdens for their significant others

    Supporting MND Patients Using NIV: Experiences of professional caregivers

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    Background Regular administration of positive pressure non-invasive ventilation (NIV), typically at night to ameliorate nocturnal hypoventilation, extends survival without halting disease progression (1). Many people with MND need practical support to benefit from NIV treatment beyond that which can be provided by family caregivers. There is a paucity of research describing formal care support in MND in general, and very little knowledge of the work of professionals supporting NIV treatment in any context. Objectives To understand how professional caregivers support NIV treatment in MND. Methods A qualitative approach was used to facilitate exploration and description of formal support of NIV treatment by a variety of health and social care professionals who, as a part of their job, provide support for MND patients using NIV. The semi-structured interview schedule included knowledge of MND symptoms, familiarity with NIV treatment, practical support, expectations, and a critical assessment of NIV treatment and their ability to support NIV treatment. The analysis was essentially explanation building, towards seeing common patterns, and ultimately providing recommendations. Results Seventeen professionals consented, including GPs, community and respiratory physiotherapists, speech and language therapists (SLTs), community nurses and nursing home/care agency staff. GPs, community physiotherapists and SLTs reported very few cases in their practices but had knowledge of NIV treatment, in contrast to community nurses and nursing home/care agency staff, who typically have neither knowledge nor experience until faced with a patient using NIV. Practical support provided by professionals included advice, titrating pressure, assistance for those unable to use the equipment independently, and psychological support. Discussion Attitudes and expectations of NIV differed, with some professionals being concerned about symptom relief, some about functional improvements (such as improved speech), and some with operational issues (such as mask comfort), without considering the worth of NIV as a treatment. Some professionals who are responsible for the daily care of patients using NIV report no education about NIV in advance of meeting such patients, and so typically learn about NIV treatment ‘on-the-job’. Conclusions Professional carers were very disparate in their attitudes and their background training in MND and NIV. There is a need to examine training requirements for nursing home/care agency staff. Furthermore, professionals showed no consensus on the benefits of NIV but were fulfilling their professional duties to administer and sustain it without knowledge or involvement in the decision to commence it. Reference Bourke S, Tomlinson M, Williams T et al Lancet Neurology 2006; 5:140-7
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