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J Neurol ; 2022 Feb 07.
Artigo em Inglês | MEDLINE | ID: mdl-35129626


BACKGROUND: Home-monitoring of spirometry has the potential to improve care for patients with a motor neuron disease (MND) by enabling early detection of respiratory dysfunction and reducing travel burden. Our aim was to evaluate the validity and feasibility of home-monitoring vital capacity (VC) in patients with MND. METHODS: We included 33 patients with amyotrophic lateral sclerosis, progressive muscular atrophy or primary lateral sclerosis who completed a 12-week home-monitoring protocol, consisting of 4-weekly unsupervised home assessments of VC and a functional rating scale. At baseline, during a home visit, patients/caregivers were trained in performing a VC test, and the investigator performed a supervised VC test, which was repeated at final follow-up during a second home visit. Validity of the unsupervised VC tests was evaluated by the differences between supervised and unsupervised VC tests, and through Bland-Altman 95% limits-of-agreement. Feasibility was assessed by means of a survey of user-experiences. RESULTS: The 95% limits-of-agreement were [- 14.3; 11.7] %predicted VC, and 88% of unsupervised VC tests fell within 10%predicted of supervised VC. 88% of patients experienced VC testing as easy and not burdensome, however, 15% patients did not think their VC test was performed as well as in the clinic. 94% of patients would like home-monitoring of VC in MND care. DISCUSSION: Unsupervised VC testing at home, with prior face-to-face training, is a valid and time-efficient method for the remote monitoring of respiratory function, and well-accepted by patients with MND and their caregivers.

J Med Internet Res ; 23(9): e28766, 2021 09 22.
Artigo em Inglês | MEDLINE | ID: mdl-34550089


Despite recent and potent technological advances, the real-world implementation of remote digital health technology in the care and monitoring of patients with motor neuron disease has not yet been realized. Digital health technology may increase the accessibility to and personalization of care, whereas remote biosensors could optimize the collection of vital clinical parameters, irrespective of patients' ability to visit the clinic. To facilitate the wide-scale adoption of digital health care technology and to align current initiatives, we outline a road map that will identify clinically relevant digital parameters; mediate the development of benefit-to-burden criteria for innovative technology; and direct the validation, harmonization, and adoption of digital health care technology in real-world settings. We define two key end products of the road map: (1) a set of reliable digital parameters to capture data collected under free-living conditions that reflect patient-centric measures and facilitate clinical decision making and (2) an integrated, open-source system that provides personalized feedback to patients, health care providers, clinical researchers, and caregivers and is linked to a flexible and adaptable platform that integrates patient data in real time. Given the ever-changing care needs of patients and the relentless progression rate of motor neuron disease, the adoption of digital health care technology will significantly benefit the delivery of care and accelerate the development of effective treatments.

Doença dos Neurônios Motores , Tecnologia Biomédica , Cuidadores , Pessoal de Saúde , Humanos , Doença dos Neurônios Motores/diagnóstico , Doença dos Neurônios Motores/terapia , Tecnologia
J Neurol ; 267(11): 3310-3318, 2020 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-32577867


BACKGROUND: Poor monitoring of respiratory function may lead to late initiation of non-invasive ventilation (NIV) in patients with motor neuron diseases (MND). Monitoring could be improved by remotely assessing hypoventilation symptoms between clinic visits. We aimed to determine which patient-reported hypoventilation symptoms are best for screening reduced respiratory function in patients with MND, and compared them to the respiratory domain of the amyotrophic lateral sclerosis functional rating scale (ALSFRS-R). METHODS: This prospective multi-center study included 100 patients with MND, who were able to perform a supine vital capacity test. Reduced respiratory function was defined as a predicted supine vital capacity ≤ 80%. We developed a 14-item hypoventilation symptom questionnaire (HYSQ) based on guidelines, expert opinion and think-aloud interviews with patients. Symptoms of the HYSQ were related to dyspnea, sleep quality, sleepiness/fatigue and pneumonia. The diagnostic performances of these symptoms and the ALSFRS-R respiratory domain were determined from the receiver operating characteristic (ROC) curves, area under the curve (AUC), sensitivity, specificity, predictive values and accuracy. RESULTS: Dyspnea-related symptoms (dyspnea while eating/talking, while lying flat and during light activity) were combined into the MND Dyspnea Scale (MND-DS). ROC curves showed that the MND-DS had the best diagnostic performance, with the highest AUC = 0.72, sensitivity = 75% and accuracy = 71%. Sleep-quality symptoms, sleepiness/fatigue-related symptoms and the ALSFRS-R respiratory domain showed weak diagnostic performance. CONCLUSION: The diagnostic performance of the MND-DS was better than the respiratory domain of the ALSFRS-R for screening reduced respiratory function in patients with MND, and is, therefore, the preferred method for (remotely) monitoring respiratory function.

Esclerose Amiotrófica Lateral , Doença dos Neurônios Motores , Insuficiência Respiratória , Esclerose Amiotrófica Lateral/complicações , Esclerose Amiotrófica Lateral/diagnóstico , Dispneia/diagnóstico , Dispneia/etiologia , Humanos , Doença dos Neurônios Motores/complicações , Doença dos Neurônios Motores/diagnóstico , Medidas de Resultados Relatados pelo Paciente , Estudos Prospectivos
Artigo em Inglês | MEDLINE | ID: mdl-32003245


Objective: To evaluate the use of telehealth as part of specialized care for patients with amyotrophic lateral sclerosis (ALS) and the user experiences of patients and healthcare professionals. Methods: Fifty patients with ALS were recruited from a single specialist center and used telehealth, consisting of an ALS-app for self-monitoring and messaging, alerts for symptom-worsening, and nurse practitioner follow-up. Patients self-monitored their well-being (daily report), body weight (weekly) and functional status (monthly). The use of the telehealth service was evaluated through adoption rate, dropout rate and adherence to self-monitoring. User-experiences were collected through online surveys among 23 patients and nine healthcare professionals, and interviews with 12 patients. Results: The adoption rate was 80%, dropout rate 4% and median follow-up was 11 months. Good adherence was seen in 49% of patients for well-being, 83% for body weight and 87% for functional assessment. For patients who discontinued using telehealth due to the end-of-life phase, median time between last measurement and death was 19 days. The majority of patients experienced using telehealth as easy, helpful, not burdensome, and reported satisfaction with flexible clinic visits and the continuity of care. Healthcare professionals reported that telehealth was of added value in ALS-care. Conclusions: ALS-care supplemented by home-monitoring and nurse practitioner follow-up was shown to be suitable and widely accepted by patients and healthcare professionals in our ALS clinic. Success factors were low self-monitoring burden, a user-friendly platform and the provision of personalized feedback. Further research is needed to replicate these findings in other ALS clinics.

Esclerose Amiotrófica Lateral/terapia , Tutoria/métodos , Monitorização Fisiológica/métodos , Telemedicina/métodos , Idoso , Esclerose Amiotrófica Lateral/psicologia , Estudos de Coortes , Estudos de Viabilidade , Feminino , Seguimentos , Humanos , Masculino , Pessoa de Meia-Idade , Monitorização Fisiológica/psicologia , Profissionais de Enfermagem/psicologia , Satisfação do Paciente , Estudos Prospectivos
Artigo em Inglês | MEDLINE | ID: mdl-31878794


Objective: We aimed to provide an overview of telehealth used in the care for patients with amyotrophic lateral sclerosis (ALS), and identify the barriers to and facilitators of its implementation. Methods: We searched Pubmed and Embase to identify relevant articles. Full-text articles with original research reporting on the use of telehealth in ALS care, were included. Data were synthesized using the Consolidation Framework for Implementation Research. Two authors independently screened articles based on the inclusion criteria. Results: Sixteen articles were included that investigated three types of telehealth: Videoconferencing, home-based self-monitoring and remote NIV monitoring. Telehealth was mainly used by patients with respiratory impairment and focused on monitoring respiratory function. Facilitators for telehealth implementation were a positive attitude of patients (and caregivers) toward telehealth and the provision of training and ongoing support. Healthcare professionals were more likely to have a negative attitude toward telehealth, due to the lack of personal evaluation/contact and technical issues; this was a known barrier. Other important barriers to telehealth were lack of reimbursement and cost-effectiveness analyses. Barriers and facilitators identified in this review correspond to known determinants found in other healthcare settings. Conclusions: Our findings show that telehealth in ALS care is well-received by patients and their caregivers. Healthcare professionals, however, show mixed experiences and perceive barriers to telehealth use. Challenges related to finance and legislation may hinder telehealth implementation in ALS care. Future research should report the barriers and facilitators of implementation and determine the cost-effectiveness of telehealth.

Esclerose Amiotrófica Lateral/terapia , Cuidadores , Aceitação pelo Paciente de Cuidados de Saúde , Telemedicina/métodos , Comunicação por Videoconferência , Esclerose Amiotrófica Lateral/psicologia , Cuidadores/psicologia , Cuidadores/tendências , Pessoal de Saúde/psicologia , Pessoal de Saúde/tendências , Humanos , Aceitação pelo Paciente de Cuidados de Saúde/psicologia , Insuficiência Respiratória/psicologia , Insuficiência Respiratória/terapia , Telemedicina/tendências , Comunicação por Videoconferência/tendências
J Rehabil Med ; 50(6): 556-562, 2018 Jun 15.
Artigo em Inglês | MEDLINE | ID: mdl-29736550


OBJECTIVE: The Wheelchair Mobility Performance (WMP) test is a reliable and valid measure to assess mobility performance in wheelchair basketball. The aim of this study was to examine the sensitivity to change of the WMP test by manipulating wheelchair configurations. METHODS: Sixteen wheelchair basketball players performed the WMP test 3 times in their own wheelchair: (i) without adjustments ("control condition"); (ii) with 10 kg additional mass ("weighted condition"); and (iii) with 50% reduced tyre pressure ("tyre condition"). The outcome measure was time (s). If paired t-tests were significant (p <0.05) and differences between conditions were larger than the standard error of measurement, the effect sizes (ES) were used to evaluate the sensitivity to change. ES values ≥0.2 were regarded as sensitive to change. RESULTS: The overall performance times for the manipulations were significantly higher than the control condition, with mean differences of 4.40 s (weight - control, ES = 0.44) and 2.81 s (tyre - control, ES = 0.27). The overall performance time on the WMP test was judged as sensitive to change. For 8 of the 15 separate tasks on the WMP test, the tasks were judged as sensitive to change for at least one of the manipulations. CONCLUSION: The WMP test can detect change in mobility performance when wheelchair configurations are manipulated.

Basquetebol/fisiologia , Pessoas com Deficiência/reabilitação , Cadeiras de Rodas/estatística & dados numéricos , Adulto , Humanos , Masculino , Adulto Jovem