Experience of telehealth in people with motor neurone disease using noninvasive ventilation.

INTRODUCTION: Evidence is emerging that telehealth provides timely and cost-effective support for individuals with motor neurone disease (MND). However, little is known about the subjective experience of using telehealth. This study was designed to examine the experiences of using telemonitoring in patients with MND on noninvasive ventilation (NIV). METHODS: Semi-structured interviews were conducted with seven patients (five males; mean age = 63 yrs; median illness duration = 14 m), who used a telemonitoring device for 24 weeks. Caregivers were present at five of the interviews; they supported communications and provided their feedback. Interviews were audio recorded and transcribed verbatim. Thematic analysis was conducted to find overarching themes. RESULTS: Five themes were identified: Benefits of Timely Intervention, Reducing the Unnecessary, Increased Self-Awareness, Taking Initiative, and Technical Challenges. Overall, timely interventions were observed as a result of regular monitoring, contributing to both physical and psychological well-being of the participants. The patient-caregiver dyads suggested that telemonitoring could reduce costs, save time and ameliorate hassles associated with attending hospital appointments. Participants articulated that telemonitoring enabled symptom awareness and interpretation; the device also enabled the participants to raise concerns and/or requests to the healthcare professionals via the messaging system. Participants confirmed that the telemonitoring device was easy to use, despite some technical issues. CONCLUSIONS: Telemonitoring was positively experienced. The findings suggest this approach is empowering and effective in promoting patients' well-being, while potentially reducing unnecessary clinical contact.Implications for RehabilitationCare for people with MND demands a flexible approach to accommodate the diversity of clinical needs and relentless physical deterioration.Telehealth allows clinicians to provide person-centred care for everyone with MND through frequent monitoring.Holistic and rehabilitative service facilitated by telehealth is generally acceptable and preferred to routine appointments among MND NIV patients.Telehealth promotes time efficient engagement with professionals that leads to symptom awareness and interpretation, while benefiting physical and psychological well-being of MND NIV patients.

Incorporating self-reported questions for telemonitoring to optimize care of patients with MND on noninvasive ventilation (MND OptNIVent).

Objective: Previous studies suggest a positive impact of telehealth in the care of people with motor neuron disease/amyotrophic lateral sclerosis (MND/ALS). This study reports the development of self-reported questions for telemonitoring, using a tablet-based device Careportal®, in the care of patients with MND on noninvasive ventilation (NIV) and its initial impact. Methods: The study consisted of a question development phase and an evaluation phase of the use of Careportal®. The development phase employed a modified Delphi process. The evaluation phase involved a 24-week pilot study with 13 patients (median age = 66; median illness duration = 14 m), who were using NIV. The participants completed overnight oximetry and self-report questions via Careportal® each week, generating interventions where required. Patient-ventilator interaction (PVI) data were monitored and the revised ALS functional rating scale (ALSFRS-R) was completed. Results: Telemonitoring encompassing the newly developed 26-item symptom questions showed good feasibility and validity. During the evaluation phase, 61 interventions were made for 10 patients, including seven patients who had routine clinic appointments during the trial to optimize care. ALSFRS-R showed significant illness deteriorations. Blood oxygen saturation (SpO2) levels were maintained, time ventilated and inspiratory pressures increased during the trial. Conclusions: The MND OptNIVent question set together with weekly ventilator and oximetry monitoring facilitated the maintenance of ventilation and SpO2 levels despite illness progression. The use of the question set, and devices, such as Careportal®, facilitate care and may further enable a single point of contact for patients from which clinicians may offer proactive interventions to optimize care.

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.

Feasibility and impact of a computer-guided consultation on guideline-based management of COPD in general practice.

BACKGROUND: Applying guidelines is a universal challenge that is often not met. Intelligent software systems that facilitate real-time management during a clinical interaction may offer a solution. AIMS: To determine if the use of a computer-guided consultation that facilitates the National Institute for Health and Clinical Excellence-based chronic obstructive pulmonary disease (COPD) guidance and prompts clinical decision-making is feasible in primary care and to assess its impact on diagnosis and management in reviews of COPD patients. METHODS: Practice nurses, one-third of whom had no specific respiratory training, undertook a computer-guided review in the usual consulting room setting using a laptop computer with the screen visible to them and to the patient. A total of 293 patients (mean (SD) age 69.7 (10.1) years, 163 (55.6%) male) with a diagnosis of COPD were randomly selected from GP databases in 16 practices and assessed. RESULTS: Of 236 patients who had spirometry, 45 (19%) did not have airflow obstruction and the guided clinical history changed the primary diagnosis from COPD in a further 24 patients. In the 191 patients with confirmed COPD, the consultations prompted management changes including 169 recommendations for altered prescribing of inhalers (addition or discontinuation, inhaler dose or device). In addition, 47% of the 55 current smokers were referred for smoking cessation support, 12 (6%) for oxygen assessment, and 47 (24%) for pulmonary rehabilitation. CONCLUSIONS: Computer-guided consultations are practicable in general practice. Primary care COPD databases were confirmed to contain a significant proportion of incorrectly assigned patients. They resulted in interventions and the rationalisation of prescribing in line with recommendations. Only in 22 (12%) of those fully assessed was no management change suggested. The introduction of a computer-guided consultation offers the prospect of comprehensive guideline quality management.

Insights into chronic obstructive pulmonary disease patient attitudes on ventilatory support.

PURPOSE OF REVIEW: A large proportion of chronic obstructive pulmonary disease (COPD) patients do not actually discuss ventilation and other end-of-life issues in the stable state. Such discussions often occur during the exacerbation itself. There is a paucity of data regarding attitudes of COPD patients toward end-of-life attitudes in general and specifically concerning the area of ventilatory support. RECENT FINDINGS: The majority of COPD patients feel end-of-life discussions are warranted in the stable state. Some studies have shown that increasing age and the presence of depression preclude patients from choosing life-sustaining treatment, whereas physicians were often inaccurate in judging patient preference for cardiopulmonary resuscitation and ventilation as they frequently underestimated patient quality of life. Patient information sheets and other tools may have a role as decision aids in end-of-life discussions. SUMMARY: Physicians should consider the discussion of end-of-life issues preferably when patients are stable. Decision aids may prove to be a valuable adjunct in framing treatments such as mechanical ventilation.

A study of patient attitudes in the United Kingdom toward ventilatory support in chronic obstructive pulmonary disease.

INTRODUCTION: Informed patient choice is central to modern clinical care but there is a paucity of data about how patients respond to information regarding complex therapies. This qualitative study aimed to understand the attitudes of patients with chronic obstructive pulmonary disease (COPD) toward acute ventilatory support and assess how aids to decision making regarding ventilation affect patients' views of therapy. METHODS: A standardized five-stage interview process was used to explore attitudes toward noninvasive ventilation (NIV) and invasive mechanical ventilation (IMV) in 50 stable COPD patients. RESULTS: Eighty-six percent found demonstration of NIV helpful in decision making compared to 24% with the photographic aid (p < 00.001). Although 96% were willing to receive NIV after a verbal description of the technique, only 76% consented when a photographic aid was shown. When NIV was demonstrated, willingness rose to 84%. While 60% were willing to receive IMV following a verbal description, this decreased to 58% following explanation of alternative treatments to IMV. Patients willing to receive IMV were younger (67 versus 76 years p = 0.016) and had a better functional status (NEADL index 20 versus 15 units p = 0.03). Only 34% had heard of advanced directives of care (ADCs), none had ever issued one but 48% expressed an interest in doing so following explanation of this process. CONCLUSION: COPD patients would find both explanation and demonstration of NIV useful in an outpatient setting. Worsening functional status along with advanced age was associated with reduced willingness to receive invasive ventilatory support. Awareness of ADCs was found to be low although almost half of the patients expressed interest in the uptake of ADCs following explanation of the process.

Avoiding hospital admission through provision of hospital care at home: a systematic review and meta-analysis of individual patient data.

BACKGROUND: Avoidance of admission through provision of hospital care at home is a scheme whereby health care professionals provide active treatment in the patient's home for a condition that would otherwise require inpatient treatment in an acute care hospital. We sought to compare the effectiveness of this method of caring for patients with that type of in-hospital care. METHODS: We searched the MEDLINE, EMBASE, CINAHL and EconLit databases and the Cochrane Effective Practice and Organisation of Care Group register from the earliest date in each database until January 2008. We included randomized controlled trials that evaluated a service providing an alternative to admission to an acute care hospital. We excluded trials in which the program did not offer a substitute for inpatient care. We performed meta-analyses for trials for which the study populations had similar characteristics and for which common outcomes had been measured. RESULTS: We included 10 randomized trials (with a total of 1327 patients) in our systematic review. Seven of these trials (with a total of 969 patients) were deemed eligible for meta-analysis of individual patient data, but we were able to obtain data for only 5 of these trials (with a total of 844 patients [87%]). There was no significant difference in mortality at 3 months for patients who received hospital care at home (adjusted hazard ratio [HR] 0.77, 95% confidence interval [CI] 0.54-1.09, p = 0.15). However, at 6 months, mortality was significantly lower for these patients (adjusted HR 0.62, 95% CI 0.45-0.87, p = 0.005). Admissions to hospital were greater, but not significantly so, for patients receiving hospital care at home (adjusted HR 1.49, 95% CI 0.96-2.33, p = 0.08). Patients receiving hospital care at home reported greater satisfaction than those receiving inpatient care. These programs were less expensive than admission to an acute care hospital ward when the analysis was restricted to treatment actually received and when the costs of informal care were excluded. INTERPRETATION: For selected patients, avoiding admission through provision of hospital care at home yielded similar outcomes to inpatient care, at a similar or lower cost.

Admission avoidance hospital at home.

BACKGROUND: Admission avoidance hospital at home is a service that provides active treatment by health care professionals in the patient's home for a condition that otherwise would require acute hospital in-patient care, and always for a limited time period. In particular, hospital at home has to offer a specific service to patients in their home requiring health care professionals to take an active part in the patients' care. If hospital at home were not available then the patient would be admitted to an acute hospital ward. Many countries are adopting this type of care in an attempt to reduce the demand for acute hospital admission. OBJECTIVES: To determine, in the context of a systematic review and meta analysis, the effectiveness and cost of managing patients with admission avoidance hospital at home compared with in-patient hospital care. SEARCH STRATEGY: The following databases were searched through to January 2008: MEDLINE, EMBASE, CINAHL, EconLit and the Cochrane Effective Practice and Organisation of Care Group (EPOC) register. We checked the reference lists of articles identified electronically for evaluations of hospital at home and obtained potentially relevant articles. Unpublished studies were sought by contacting providers and researchers who were known to be involved in this field. SELECTION CRITERIA: Randomised controlled trials recruiting patients aged 18 years and over. Studies comparing admission avoidance hospital at home with acute hospital in-patient care. The admission avoidance hospital at home interventions may admit patients directly from the community thereby avoiding physical contact with the hospital, or may admit from the emergency room. DATA COLLECTION AND ANALYSIS: Two authors independently extracted data and assessed study quality. Our statistical analyses sought to include all randomised patients and were done on an intention to treat basis. We requested individual patient data (IPD) from trialists, and relied on published data when we did not receive trial data sets or the IPD did not include the relevant outcomes. When combining outcome data was not possible because of differences in the reporting of outcomes we have presented the data in narrative summary tables.For the IPD meta-analysis, where at least one event was reported in both study groups in a trial, Cox regression models were used to calculate the log hazard ratio and its standard error for mortality and readmission separately for each data set (where both outcomes were available). We included randomisation group (admission avoidance hospital at home versus control), age (above or below the median), and gender in the models. The calculated log hazard ratios were combined using fixed effects inverse variance meta analysis. If there were no events in one group we used the Peto odds ratio method to calculate a log odds ratio from the sum of the log-rank test 'O-E' statistics from a Kaplan Meier survival analysis. Statistical significance throughout was taken at the two-sided 5% level (p<0.05) and data are presented as the estimated effect with 95% confidence intervals. For each comparison using published data for dichotomous outcomes we calculated risk ratios using a fixed effects model to combine data. MAIN RESULTS: We included 10 RCTs (n=1333), 7 of which were eligible for the IPD. Five out of these seven trials contributed to the IPD meta-analysis (n=850/975; 87%). There was a non significant reduction in mortality at three months for the admission avoidance hospital at home group (adjusted HR 0.77, 95% CI 0.54 to 1.09; p=0.15), which reached significance at six months follow-up (adjusted HR 0.62, 95% CI 0.45 to 0.87; p=0.005). A non significant increase in admissions was observed for patients allocated to hospital at home (adjusted HR 1.49, 95% CI 0.96 to 2.33; p=0.08). Few differences were reported for functional ability, quality of life or cognitive ability. Patients reported increased satisfaction with admission avoidance hospital at home. Two trials conducted a full economic analysis, when the costs of informal care were excluded admission avoidance hospital at home was less expensive than admission to an acute hospital ward. AUTHORS' CONCLUSIONS: We performed meta-analyses where there was sufficient similarity among the trials and where common outcomes had been measured. There is no evidence from the analysis to suggest that admission avoidance hospital at home leads to outcomes that differ from inpatient hospital care.

Ventilatory failure on acute take.

The optimal management of acute ventilatory failure lies in a multidisciplinary approach focusing on doing simple things correctly, close liaison between healthcare professionals and adequate communication with patients and carers. The use of NIV support is increasing in a variety of conditions, both inside and outside the ICU.

Health professionals' responses to the introduction of a home telehealth service.

An ethnographic (participant observation) study was undertaken of the socio-technical processes involved in the implementation, within a randomized controlled trial, of a home telehealth nursing service for patients with chronic obstructive pulmonary disease (COPD). Ethnographic field notes were taken about technology-related tasks and the interplay between the research team and the 12 nurses who were to use the telehealth equipment. Views of the technology were linked to views of professional self-image and status. The technology was sometimes seen as unhelpful in establishing effective relationships with patients. Considerable work by all participants, over a period of months, was required to develop the technology in ways that minimized the risk to the stability of the specialist service and existing nurse-patient relationships. Our work highlights the complex problems that health professionals encounter when they try to integrate new technologies into routine service delivery. The concerns arising from the interplay of new technology with existing professional practices and relationships go beyond simple issues of training.