Search

Aims: Explore the experience of living with fatigue in persons with advanced heart failure. Design: Single-setting, qualitative interview study. Methods: In-depth interviews were conducted from November 2012 – June 2013. Participant responses to open-ended questions were analysed using thematic analysis. Inclusion criteria: 18 years and older, diagnosis of New York Heart Association class III-IV heart failure with reduced ejection fraction and able to participate in interviews in their own language. Exclusion criteria was cognitive deficit Twenty-three participated in the study. Results: Participants (age 72.5 ± 9.5 years, 10/23 female), identified experiencing fatigue daily with 14/23 reporting it as their worst symptom or combined worst symptom with breathlessness. Three key themes were identified: fatigue as a physical barrier, psychological response to fatigue, and living with fatigue as a part of daily life. Conclusion: As heart failure progresses fatigue influences patients' daily life and may negatively affect self-care abilities however patients strive to adapt to these limitations. [ABSTRACT FROM AUTHOR]

Our objective was to investigate the relationship between support by health and social care services and caregiver well-being. A survey, including a generic health status measure (SF-12), a disease-specific measure for patients (ALSAQ-40), the Carer Strain Index (CSI) for caregivers and questions on experiences of health and social care services, was sent to patient members of the MND Association (UK) and their caregivers. A single 'problem score' was calculated from the experience questions and the relationship between the problem score with caregiver and patient well-being was analysed. Most caregivers reported at least one problem with support from services. The most common problems were services not valuing caregivers' experiences, and caregivers not feeling sufficiently involved in planning care. The problem score significantly increased with increasing caregiver strain and worsening mental health. The problem score was also increased as patient well-being decreased. The results suggest that caregiver strain was higher and mental health lower as the number of problems reported increased. A higher perceived lack of caregiver support was also related to a decrease in patient well-being, suggesting that caregivers' needs increase as the disease progresses. This emphasizes the importance of MND caregivers being appropriately supported by health and social care services in their caregiving role. [ABSTRACT FROM AUTHOR]

Our objective was to develop a validated questionnaire that can measure the extent to which dimensions of caring affect the health of carers of patients with motor neuron disease. An initial 190-item questionnaire was developed from in-depth interviews, focus groups and two pilot studies with carers. Factor analysis was applied to the data obtained from a large survey in the UK that identified the underlying dimensions of caring. The newly formed scales were tested for reliability using Cronbach's α, and for construct validity. The SF36-v2 was the benchmark instrument on which correlations were made to ascertain the relationship with carers’ health. A 34-item instrument was developed which has demonstrated promising evidence of internal reliability and validity for six scales: emotional well-being, physical well-being, self care, disturbed sleep, carers’ support needs and statutory services. High correlations were found with the Mental Component Score summary scale of the SF-36v2 (0.40–0.66). The development and testing of the MNDCQ indicates that as the carers’ score on the MNDCQ increases, suggesting a higher level of burden, they are more likely to report poor health. Further longitudinal studies are needed to further test the instruments’ ability to detect change over time. [ABSTRACT FROM AUTHOR]

Amyotrophic lateral sclerosis/motor neuron disease and other related disorders are fatal progressive neurodegenerative conditions that have a substantial impact on quality of life (QoL). This systematic review examines the different methods and instruments used to assess QoL in this condition from which recommendations are made of those that evidence suggests are the most appropriate. Databases were used to survey the available literature to cover as many different approaches and papers as possible. Due to the wide variety of approaches to the measurement of QoL data across the papers, no meta-analysis was possible. The available evidence suggests that at the present time the most appropriate measures are the SF-36, a generic widely used QoL measure, and the disease specific ALSAQ-40. However, as many of the validation studies on the ALSAQ-40 were undertaken by the developers of this instrument, further independent research is desirable to confirm these conclusions. [ABSTRACT FROM AUTHOR]

The Amyotrophic Lateral Sclerosis Assessment Questionnaire (ALSAQ-40) is the most widely validated measure of health status for use with patients diagnosed with motor neuron disease/amyotrophic lateral sclerosis (MND/ALS). The questionnaire was designed to be used in studies evaluating treatment regimes where missing data may cause problems with data analyses.The purpose of this paper is to evaluate an algorithm for the imputation of missing dimension scores on the ALSAQ-40. We used a postal survey of patients diagnosed with MND/ALS. One thousand, nine hundred and seventy-nine patients were surveyed and 1093 (55.2%) questionnaires returned. Of these, complete ALSAQ-40 data was available in 854 (85.8%) cases. Data were deleted from this complete dataset, and in a randomly selected subset of 100 cases, and then imputed using the Expectation Maximization (EM) algorithm: results were then compared to the dataset prior to data deletion. Descriptive statistics, mean scores and spread of scores were almost identical between original and imputed datasets. Furthermore, the two datasets were highly correlated (intra-class correlation coefficient = 0.95 or greater), and mean differences were small (±1.00). We concluded that EM imputation for the ALSAQ-40 provides data that closely mirrors the original when this has been deliberately removed. Consequently, EM is likely to be appropriate for studies using the ALSAQ-40 that contain missing data points. [ABSTRACT FROM AUTHOR]

Carers of people with MND may experience changes to their health and lifestyle. Statutory and voluntary organizations are able to support the carer in various ways. This review investigates the personal impact on carers and their experiences of service provision. A systematic search of online and grey literature was made for the period 1994–2004. Thirty‐two key texts were retrieved and a narrative synthesis conducted. The main themes were: 1) Impact on carer: general health, emotional state, life satisfaction, socio‐economic concerns, relationships, and protective factors; 2) Experience of service provision: primary care, health professionals, social care, written information, and voluntary organizations. There is a paucity of written documentation on the experience of assisting someone with MND. Data collected are diverse and sometimes contradictory. Sample sizes are often small and generalization difficult. Main findings show that maintenance of social support, activities, and a positive outlook may lessen the chance of ill health arising from long hours spent caring, and having a named coordinator may assist with access to resources, and provide practical and emotional support during and after the caring role. Carers may become ill themselves unless adequate support is given to them throughout the course of the disease. [ABSTRACT FROM AUTHOR]

This systematic review comprises an objective appraisal of the evidence in regard to the management of respiration in patients with motor neuron disease (MND/ALS). Studies were identified through computerised searches of 32 databases. Internet searches of websites of drug companies and MND/ALS research web sites, ‘snow balling’ and hand searches were also employed to locate any unpublished study or other ‘grey literature’ on respiration and MND/ALS. Since management of MND/ALS involves a number of health professionals and care workers, searches were made across multiple disciplines. No time frame was imposed on the search in order to increase the probability of identifying all relevant studies, although there was a final limit of March 2005. Recommendations for patient and carer-based guidelines for the clinical management of respiration for MND/ALS patients are suggested on the basis of qualitative analyses of the available evidence. However, these recommendations are based on current evidence of best practice, which largely comprises observational research and clinical opinion. There is a clear need for further evidence, in particular randomised and non-randomised controlled trials on the effects of non-invasive ventilation and additional larger scale cohort studies on the issues of initial assessment of respiratory symptoms, and management and timing of interventions. [ABSTRACT FROM AUTHOR]

Addresses the evidence in regard to the management of nutrition for patients with motor neurone disease/amyotrophic lateral sclerosis. Impact of the symptoms and progression of motor neurone disease on patient's nutrition and hydration; Need for percutaneous endoscopic gastrostomy in the later stages of motor neurone disease; Questions to address components of nutritional management.

Objective: to explore and describe the impact of endometriosis upon quality of life.Setting: Nuffield Department of Obstetrics and Gynaecology, University of Oxford.Design: qualitative study.Sample: twenty-four women with a laparoscopic diagnosis of endometriosis.Methods: face to face, individual, in-depth interviews.Results: analysis of the data revealed 15 descriptive categories. Pain, physical functioning, role performance, social functioning, emotional well-being, relationship with the medical profession, treatment, sexual intercourse, energy and vitality, employment and infertility were found to be a particular concern for women with endometriosis. Physical appearance, lack of control and powerlessness, feelings of social isolation and concerns that their daughters might develop endometriosis were new areas found to be negatively affected by the condition.Conclusions: the impact of endometriosis-associated symptoms upon quality of life is multidimensional and more complex than just negatively affecting psychosocial parameters. Conducting in-depth interviews to explore the subjective experiences of patients with endometriosis enabled the diverse areas of quality of life to be identified. Adopting a qualitative methodology is essential for item generation on disease specific health status questionnaires. [ABSTRACT FROM AUTHOR]

OBJECTIVES: To determine which factors are predictive of physical and mental health one year after a first measurement of health status in amyotrophic lateral sclerosis (ALS) patients. METHODS: The Physical Component Summary (PCS) score and the Mental Component Summary (MCS) score of the SF-36 were used as the main outcome measures in patients enrolled in the European ALS Health Profile Study (ALS-HPS). Correlation and stepwise regression procedures were used to determine the relationship between patients' physical and mental health status at follow-up with baseline measures. RESULTS: A total of 1118 patients were recruited into the ALS-HPS, of which 918 (82.11%) returned fully or partially completed baseline and follow-up surveys. PCS scores declined over time. No significant changes were reported for the MCS scores over time for patients with ALS. Baseline scores were found to be significant predictors of patients' health status over time. CONCLUSIONS: Overall, patients' physical health status at the time of recruitment was the major predictor of the physical health status at both first and second follow-up time assessments. The same relationship was found between baseline and follow-up mental health status. The study also confirms the appropriateness of the use of the SF-36 in ALS patients. [ABSTRACT FROM AUTHOR]

OBJECT: The purpose of this study was to compare the performance of the five-item mental health dimension of SF-36 (the Mental Health Index, MHI-5) with that of the 22-item Psychological General Well-Being Index (PGWB) in patients presenting with amyotrophic lateral sclerosis/motor neuron disease, using tests of reliability and validity. DESIGN: A questionnaire-based survey of patients diagnosed with ALS across 15 European countries. SAMPLE: Patients presenting at neurological clinics for treatment of their ALS were asked to join the survey. RESULTS: 1048 patients with ALS have been recruited, of whom 861 (82.2%) have returned baseline questionnaires. There was evidence supporting the internal consistency of both instruments, and for their construct validity in distinguishing between groups, in terms of gender and age. The scores on the two instruments were highly correlated (Spearman rank correlation 0.85). CONCLUSION: Both the MHI-5 and the PGWB showed high levels of construct validity and internal reliability in this patient group. The MHI-5 has comparable psychometric performance to the PGWB, and can be used to measure and compare mental health in defined populations. [ABSTRACT FROM AUTHOR]

Background. Subjective accounts of health status are increasingly utilized in social surveys and medical research to assess functioning and well-being. Despite the fact that substantial research evidence suggests that self-rated health is meaningful and provides valid and reliable data, some authors have raised concerns that different social groups may interpret the notion of health in different ways, and hence complete health measures in systematically different ways. This study evaluates the validity of using self-rated health status to measure health status in different ethnic groups. Methods. Logistic regression models were used to examine the association of selfrated health with more objective measures of morbidity in different ethnic groups. Sample. Two sources of data were used-the Health Survey for England (HSE) 1991-96 combined file and the Fourth National Survey of Ethnic Minorities (Ethmins4). Measures of health. Hypertension, presence of cardiovascular disease or diabetes, limiting health and number of visits to a doctor. Self-rated health was measured on 5-point scale ranging from excellent to very poor. Results. Poorer self-rated health was associated with greater morbidity within each ethnic group. Furthermore, there was little evidence that the association of self-rated health with more objective measures of morbidity differed between ethnic groups. Conclusion. The evidence reported here suggests that the use of a single item measure of self-rated health to measure health status in different ethnic groups is valid. Further research might usefully explore the validity of using more comprehensive profile measures of health status in different ethnic groups. [ABSTRACT FROM AUTHOR]

The author discusses the importance of monitoring and measuring patient experience on the healthcare industry in England as a fundamental factor to analyze healthcare quality. Topics discussed include several studies about methods to measure and assess patient experience, the national policy discourse in the country which promotes patient experience to drive improvements in healthcare quality, and programmes from National Health Service (NHS) that measures patient experience.

OBJECTIVES: The purpose of the study was to assess the validity and reliability of a new disease specific measure of health-related quality of life for ALS/MND: the 40-item ALS Assessment Questionnaire (ALSAQ-40). DESIGN: We carried out a longitudinal postal survey. The two administrations of the questionnaire were separated by 3 months SAMPLE: Subjects were patients diagnosed with ALS/MND and registered with the UK MND Association. RESULTS: Dimensions of the ALSAQ-40 were shown to have high levels of internal reliability. The ALSAQ-40 was found to be sensitive to changes in self reported overall health state. CONCLUSION: We concluded that the ALSAQ-40 has high levels of reliability and validity and can be used as an outcome measure in studies evaluating new treatment regimes and therapies. (Amyot Lat Scler 1999; 1:33–40). [ABSTRACT FROM AUTHOR]

The Parkinson's Disease Questionnaire (PDQ-39) is a disease specific measure of health status which covers eight dimensions of ill-health, and contains 39 questions. The development of the questionnaire has been outlined in full elsewhere and is briefly outlined in this paper. Psychometric techniques are used here to derive a single index figure from the PDQ-39, transformed to a score range from 0 (good health) to 100 (poor health). A sub-set of items is then selected from the PDQ-39 to create a shorter form version, the PDQ-8. Each item selected is the one most highly correlated with the overall domain score to which it contributes: in cases where more than one item correlated equally strongly with the total then the item which received the highest completion rate was selected. The items were summed together and transformed onto a score from 0 to 100. The results gained from the single index gained from the PDQ-39 are compared with that gained from the PDQ-8, and are found to be remarkably similar. The use of the PDQ-8 is recommended over the PDQ-39 where a shorter form measure is required and where a single index measure of overall health status is acceptable or desirable. [ABSTRACT FROM PUBLISHER]

Editorial. Discusses the evidence for an environmental factor in the causation of amyotrophic lateral sclerosis (ALS). Possible influences of genetic factors, of inherited susceptibility and of acquired exposure to environmental or endogeneous toxins; Health-related quality of life of patients with ALS.