Why don't they accept non-invasive ventilation?: insight into the interpersonal perspectives of patients with motor neurone disease.

OBJECTIVES: Although non-invasive ventilation (NIV) can benefit survival and quality of life, it is rejected by a substantial proportion of people with motor neurone disease (MND). The aim of this study was to understand why some MND patients decline or withdraw from NIV. METHOD: Nine patients with MND (male = 7, mean age = 67 years) participated in this study. These patients, from a cohort of 35 patients who were offered NIV treatment to support respiratory muscle weakness, did not participate in NIV treatment when it was clinically appropriate. Semi-structured interviews and interpretative phenomenological analysis (IPA) were employed to explore these patient's experience of MND and their thoughts and understanding of NIV treatment. RESULTS: Using IPA, four themes were identified: preservation of the self, negative perceptions of NIV, negative experience with health care services, and not needing NIV. Further analysis identified the fundamental issue to be the maintenance of perceived self, which was interpreted to consist of the sense of autonomy, dignity, and quality of life. CONCLUSIONS: The findings indicate psychological reasons for disengagement with NIV. The threat to the self, the sense of loss of control, and negative views of NIV resulting from anxiety were more important to these patients than prolonging life in its current form. These findings suggest the importance of understanding the psychological dimension involved in decision-making regarding uptake of NIV and a need for sensitive holistic evaluation if NIV is declined. Statement of contribution What is already known on this subject? Non-invasive ventilation is widely used as an effective symptomatic therapy in MND, yet about a third of patients decline the treatment. Psychological disturbance generated by NIV use leads to negative experiences of the treatment. Decision-making about treatment potentials is complex and unique to each individual affected by perceived impact of disease. What does this study add? A decision concerning NIV uptake was influenced by perceived impact on individuals' sense of self. Sense of self was influenced by the maintenance of autonomy, dignity, and quality of life. Individuals' sense of self was identified to have been challenged by the disease, NIV, and their experience of health care service.

Experience of long-term use of non-invasive ventilation in motor neuron disease: an interpretative phenomenological analysis.

OBJECTIVE: Although non-invasive ventilation (NIV) can promote quality of life in motor neuron disease (MND), previous studies have disregarded the impact of progression of illness. This study explored how patients' perceptions of NIV treatment evolve over time and how this was reflected in their adherence to NIV. METHODS: Five patients with MND (male=4, mean age=59 years), from a bigger cohort who were prospectively followed, had multiple post-NIV semistructured interviews, covering more than 12 months, along with ventilator interaction data. The transcribed phenomenological data were analysed using qualitative methodology. RESULTS: Three themes emerged: experience of NIV, influence on attitudes and perceived impact of NIV on prognosis. The ventilator interaction data identified regular use of NIV by four participants who each gave positive account of their experience of NIV treatment, and irregular use by one participant who at interview revealed a negative attitude to NIV treatment and in whom MND induced feelings of hopelessness. CONCLUSIONS: This exploratory study suggests that a positive coping style, adaptation and hope are key factors for psychological well-being and better adherence to NIV. More studies are needed to determine these relationships.

Assessing social isolation in motor neurone disease: a Rasch analysis of the MND Social Withdrawal Scale.

OBJECTIVE: Social withdrawal is described as the condition in which an individual experiences a desire to make social contact, but is unable to satisfy that desire. It is an important issue for patients with motor neurone disease who are likely to experience severe physical impairment. This study aims to reassess the psychometric and scaling properties of the MND Social Withdrawal Scale (MND-SWS) domains and examine the feasibility of a summary scale, by applying scale data to the Rasch model. METHODS: The MND Social Withdrawal Scale was administered to 298 patients with a diagnosis of MND, alongside the Hospital Anxiety and Depression Scale. The factor structure of the MND Social Withdrawal Scale was assessed using confirmatory factor analysis. Model fit, category threshold analysis, differential item functioning (DIF), dimensionality and local dependency were evaluated. RESULTS: Factor analysis confirmed the suitability of the four-factor solution suggested by the original authors. Mokken scale analysis suggested the removal of item five. Rasch analysis removed a further three items; from the Community (one item) and Emotional (two items) withdrawal subscales. Following item reduction, each scale exhibited excellent fit to the Rasch model. A 14-item Summary scale was shown to fit the Rasch model after subtesting the items into three subtests corresponding to the Community, Family and Emotional subscales, indicating that items from these three subscales could be summed together to create a total measure for social withdrawal. CONCLUSION: Removal of four items from the Social Withdrawal Scale led to a four factor solution with a 14-item hierarchical Summary scale that were all unidimensional, free for DIF and well fitted to the Rasch model. The scale is reliable and allows clinicians and researchers to measure social withdrawal in MND along a unidimensional construct.

The patient experience of fatigue in motor neurone disease.

AIMS: This paper is a qualitative investigation that aims to investigate the lived experience of fatigue in patients with motor neurone disease-a progressive and fatal neurological condition. BACKGROUND: Fatigue is a disabling symptom in motor neurone disease (MND) that affects a large number of patients. However, the term "fatigue" is in itself imprecise, as it remains a phenomenon without a widely accepted medical definition. This study sought to investigate the phenomenon of fatigue from the perspective of the MND patient. METHODS: Ten patients with MND participated in semi-structured recorded interviews at a regional neuroscience center in Liverpool, UK. Transcripts analysis was broadly informed by the principles of interpretative phenomenological analysis (IPA). FINDINGS: Fatigue was unanimously explained to be disabling and progressive phenomenon. Participants described two forms of fatigue: whole-body tiredness or use-dependent reversible muscle weakness related to exertion of limb and bulbar muscles. Both weakness and whole-body tiredness could be experienced simultaneously, and patients used the terms "fatigue" and "tiredness" interchangeably. Alongside descriptions of fatigue themes of Adaptation, Motivation, Avoidance, Frustration and Stress were revealed. Fatigue could be defined as "reversible motor weakness and whole-body tiredness that was predominantly brought on by muscular exertion and was partially relieved by rest." CONCLUSION: The results of this study support a multi-dimensional model of fatigue for patients with MND. Fatigue appears to be experienced and explained in two ways, both as an inability to sustain motor function and as a pervasive tiredness. Fatigue was only partially relieved by rest and tended to worsen throughout the day. It is crucial that MND care practitioners and researchers appreciate the semantic dichotomy within fatigue.

Development of a patient reported outcome measure for fatigue in motor neurone disease: the Neurological Fatigue Index (NFI-MND).

BACKGROUND: The objective of this research was to develop a disease-specific measure for fatigue in patients with motor neurone disease (MND) by generating data that would fit the Rasch measurement model. Fatigue was defined as reversible motor weakness and whole-body tiredness that was predominantly brought on by muscular exertion and was partially relieved by rest. METHODS: Qualitative interviews were undertaken to confirm the suitability of a previously identified set of 52 neurological fatigue items as relevant to patients with MND. Patients were recruited from five U.K. MND clinics. Questionnaires were administered during clinic or by post. A sub-sample of patients completed the questionnaire again after 2-4 weeks to assess test-retest validity. Exploratory factor analyses and Rasch analysis were conducted on the item set. RESULTS: Qualitative interviews with ten MND patients confirmed the suitability of 52 previously identified neurological fatigue items as relevant to patients with MND. 298 patients consented to completing the initial questionnaire including this item set, with an additional 78 patients completing the questionnaire a second time after 4-6 weeks. Exploratory Factor Analysis identified five potential subscales that could be conceptualised as representing: 'Energy', 'Reversible muscular weakness' (shortened to 'Weakness'), 'Concentration', 'Effects of heat' and 'Rest'. Of the original five factors, two factors 'Energy' and 'Weakness' met the expectations of the Rasch model. A higher order fatigue summary scale, consisting of items from the 'Energy' and 'Weakness' subscales, was found to fit the Rasch model and have acceptable unidimensionality. The two scales and the higher order summary scale were shown to fulfil model expectations, including assumptions of unidimensionality, local independency and an absence of differential item functioning. CONCLUSIONS: The Neurological Fatigue Index for MND (NFI-MND) is a simple, easy-to-administer fatigue scale. It consists of an 8-item fatigue summary scale in addition to separate scales for measuring fatigue experienced as reversible muscular weakness and fatigue expressed as feelings of low energy and whole body tiredness. The underlying two factor structure supports the patient concept of fatigue derived from qualitative interviews in this population. All three scales were shown to be reliable and capable of interval level measurement.

Rasch analysis of the hospital anxiety and depression scale (HADS) for use in motor neurone disease.

BACKGROUND: The Hospital Anxiety and Depression Scale (HADS) is commonly used to assess symptoms of anxiety and depression in motor neurone disease (MND). The measure has never been specifically validated for use within this population, despite questions raised about the scale's validity. This study seeks to analyse the construct validity of the HADS in MND by fitting its data to the Rasch model. METHODS: The scale was administered to 298 patients with MND. Scale assessment included model fit, differential item functioning (DIF), unidimensionality, local dependency and category threshold analysis. RESULTS: Rasch analyses were carried out on the HADS total score as well as depression and anxiety subscales (HADS-T, D and A respectively). After removing one item from both of the seven item scales, it was possible to produce modified HADS-A and HADS-D scales which fit the Rasch model. An 11-item higher-order HADS-T total scale was found to fit the Rasch model following the removal of one further item. CONCLUSION: Our results suggest that a modified HADS-A and HADS-D are unidimensional, free of DIF and have good fit to the Rasch model in this population. As such they are suitable for use in MND clinics or research. The use of the modified HADS-T as a higher-order measure of psychological distress was supported by our data. Revised cut-off points are given for the modified HADS-A and HADS-D subscales.

Tai Chi exercise in improving cardiorespiratory capacity.

INTRODUCTION/PURPOSE: To evaluate evidence relating to effects of Tai Chi on cardiovascular outcomes, with emphasis on randomised control designs. PROCEDURE: Studies reviewed in 2004 were re-examined, together with more recent controlled trials of Tai Chi relating to cardiovascular outcome. The analysis provided comment on problems associated with randomised control design, including sources of bias in such trials. RESULTS: With a single exception, data support reduction of baseline systolic/diastolic blood pressure (BP). While there may be positive bias in these studies, data are from diverse ethnic groups, different gender, age, and level of functional ability. There are no data relating to BP reactive change to subsequent stressors. Few studies consider potential mediating mechanisms through which Tai Chi may provide these benefits. IMPLICATIONS: Caution is advocated in using randomised controlled trials as the only effective type of study. Such designs are difficult to conduct and effective trials are more likely given a better understanding of the mediating mechanism(s) through which benefits may be derived. It is currently unclear how changes in BP are derived. Some data indicate a shift to increased vagal relative to sympathetic dominance and there may be other potential physiological mediators. No study has examined relationships between potential psychological gains such as self-efficacy and BP change, or individual differences in outcomes.

Perceptions of self-efficacy and rehabilitation among neurologically disabled adults.

OBJECTIVE: To explore constructs relevant to self-efficacy in neurological rehabilitation. DESIGN: Qualitative methods using semi-structured interviews. SETTING: Specialist neurological rehabilitation unit, Liverpool, UK. SUBJECTS: Twenty-four patients (12 male) with experience of inpatient rehabilitation, aged 17-59 (mean 38.1) years at onset, with diagnoses of stroke (n = 8), traumatic brain injury (n = 6) or other monophasic neurological impairment (n = 10). RESULTS: Eleven themes emerged from the data that reflect self-efficacy beliefs: self-reliance and independence were deemed important and many patients recognized the importance of determination, making time to take an active role and working in partnership with the multidisciplinary team. Patients had complex information needs but were able to use goal setting and the vicarious experiences of other inpatients to map out the stages of their own recovery. It was important for patients to be able to recognize for themselves that they were making progress and they valued external reassurance on this from other patients, staff and visitors. A number of difficulties were identified that interfered with their developing self-efficacy in rehabilitation, such as structuring their time. Two different models for rehabilitation emerged from the data, 'recovery' and 'adaptation'. CONCLUSIONS: Patients consistently identified 11 factors falling in the supraordinate themes of self, others and process, and these influenced their self-efficacy to participate in neurological rehabilitation. Patients consider rehabilitation in terms of either an 'adaptation' or 'recovery' model.

Quality of life outcomes after coronary artery bypass graft surgery: relationship to neuropsychologic deficit.

OBJECTIVES: Neuropsychologic assessment after coronary artery bypass graft surgery indicates cognitive deficits, but data on their effect on health-related quality of life are relatively sparse. The present study assessed neuropsychologic deficits, self-reported health-related quality of life, and mood, together with proxy rating of patients' activities after bypass surgery. More specifically, the study examines the relationship between these varied outcome measures. METHODS: A prospective longitudinal assessment of 71 male patients was performed over a 6-month period: 1 week before surgery and postoperatively at 2 and 6 months. Within-patient change was assessed with the neuropsychologic test battery and procedures recommended by the Consensus Panel, the Short Form-36 to measure self-reported health-related quality of life, and the Hospital Anxiety and Depression Scale questionnaire to assess anxiety and depression. Proxy ratings were documented with the Functional Activities Questionnaire. RESULTS: Poor preoperative health-related quality of life was largely unrelated to medical variables. Cognitive deficit was found in 42% of patients at 2 months and 22% of patients at 6 months. Physical health-related quality of life improved, but benefit for emotional and social functioning was unconvincing, especially over the short term. Although cognitive deficits were largely unrelated to Short Form-36 health-related quality of life, and only partially related to anxiety and depression, they were associated with proxy ratings of patient functioning. CONCLUSIONS: Physical health-related quality of life benefits were confirmed, but adverse cognitive change and only limited emotional benefit were evident after coronary artery bypass graft surgery. Perceived physical gains are unrelated to any cognitive deficit, but the latter correlated with the emotional status of the patient 6 months after surgery and are of concern to close relatives. These issues should be addressed in patient care.

Health benefits of Tai Chi exercise: improved balance and blood pressure in middle-aged women.

Tai Chi has been widely practiced as a Chinese martial art that focuses on slow sequential movements, providing a smooth, continuous and low intensity activity. It has been promoted to improve balance and strength and to reduce falls in the elderly, especially those 'at risk'. The potential benefits in healthy younger age cohorts and for wider aspects of health have received less attention. The present study documented prospective changes in balance and vascular responses for a community sample of middle-aged women. Seventeen relatively sedentary but healthy normotensive women aged 33-55 years were recruited into a three times per week, 12-week Tai Chi exercise programme. A further 17 sedentary subjects matched for age and body size were recruited as a control group. Dynamic balance measured by the Functional Reach Test was significantly improved following Tai Chi, with significant decreases in both mean systolic (9.71 mmHg) and diastolic (7.53 mmHg) blood pressure. The data confirm that Tai Chi exercise can be a good choice of exercise for middle-aged adults, with potential benefits for ageing as well as the aged.