Development and Evaluation of the Telehealth in Motor Neuron Disease System: The TIME Study Protocol.

Background: For more responsive care provision for motor neuron disease and caregivers, a digital system called Telehealth in MND-Care (TiM-C) was created. TiM-C sends regular symptom questionnaires to users; their responses are sent to health care professionals (HCPs). To enable people with motor neuron disease to participate in research studies more easily, a parallel platform was developed from TiM-C, called Telehealth in MND-Research (TiM-R).

Measuring Health-Related Quality of Life in Amyotrophic Lateral Sclerosis: A Systematic Review and Conceptual Framework.

Background And Objectives: The assessment of health-related quality of life (HRQoL) in patients with amyotrophic lateral sclerosis (ALS) is heterogeneous and inconsistent. The objectives of this study were (1) to develop a comprehensive conceptual framework of HRQoL in ALS and (2) map the content of existing patient-reported outcome measures (PROMs) used in ALS to this novel framework.

Methods: Our model of HRQoL in ALS (Health-related Quality of life in Amyotrophic Lateral Sclerosis, QuALS) was developed from a systematic literature review and consultative input from key stakeholders (patients, carers, and health care professionals).

White Paper: Open Digital Health - accelerating transparent and scalable health promotion and treatment.

In this White Paper, we outline recommendations from the perspective of health psychology and behavioural science, addressing three research gaps: (1) What methods in the health psychology research toolkit can be best used for developing and evaluating digital health tools? (2) What are the most feasible strategies to reuse digital health tools across populations and settings? (3) What are the main advantages and challenges of sharing (openly publishing) data, code, intervention content and design features of digital health tools? We provide actionable suggestions for researchers joining the continuously growing Open Digital Health movement, poised to revolutionise health psychology research and practice in the coming years. This White Paper is positioned in the current context of the COVID-19 pandemic, exploring how digital health tools have rapidly gained popularity in 2020-2022, when world-wide health promotion and treatment efforts rapidly shifted from face-to-face to remote delivery. This statement is written by the Directors of the not-for-profit Open Digital Health initiative (n = 6), Experts attending the European Health Psychology Society Synergy Expert Meeting (n = 17), and the initiative consultant, following a two-day meeting (19-20th August 2021).

Telehealth in long-term neurological conditions: the potential, the challenges and the key recommendations.

Long-term neurological conditions (LTNCs) cause physical and psychological symptoms that have a significant impact on activities of daily living and quality of life. Multidisciplinary teams are effective at providing treatment for people with LTNCs; however, access to such services by people with disabilities can be difficult and as a result, good quality care is not universal. One potential solution is telehealth.

A Road Map for Remote Digital Health Technology for Motor Neuron Disease.

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.

Reflexive thematic analysis exploring stakeholder experiences of virtual pulmonary rehabilitation (VIPAR).

Introduction: To enable greater availability of pulmonary rehabilitation (PR), video-conferencing technology was employed to link a community site to a standard outpatient PR service to deliver the programme closer to those with chronic respiratory disease. The service was called virtual pulmonary rehabilitation (VIPAR). To understand the experiences of those involved in this service, this study aimed to answer the question: How do the different stakeholders that interact with VIPAR experience the programme?

Methods: Focus groups were conducted with people with chronic lung disease attending either the community or outpatient PR site, in addition to the staff involved in the running of the PR groups.

Using self-determination theory to predict self-management and HRQoL in moderate-to-severe COPD.

Chronic Obstructive Pulmonary Disease (COPD) is a long-term condition that detrimentally affects health-related quality of life (HRQoL), with self-management proposed as an effective treatment. Using self-determination theory (SDT), this research explored psychological need satisfaction, frustration, and behavioural regulation to explain indicators of self-management. Cross-sectional, questionnaire-based methods in people on a pulmonary rehabilitation waiting-list.

Using the Technology Acceptance Model to conceptualise experiences of the usability and acceptability of a self-management app (COPD.Pal®) for Chronic Obstructive Pulmonary Disease.

Chronic Obstructive Pulmonary Disease (COPD) is a long-term progressive inflammatory lung disease causing chronic breathlessness and many hospital admissions. It affects up to 1.2 million people in the UK.

Safety, feasibility, and effectiveness of virtual pulmonary rehabilitation in the real world.

Purpose: To assess the feasibility, safety, and effectiveness of a VIrtual PulmonAry Rehabilitation (VIPAR) program in a real-world setting.

Patients And Methods: Twenty-one patients with stable chronic lung disease at a spoke site received (VIPAR) through live video conferencing with a hub where 24 patients were receiving 14 sessions of standard, outpatient, multi-disciplinary pulmonary rehabilitation (PR) in a hospital. We studied three such consecutive PR programs with 6-10 patients at each site.

Quality of life in patients receiving telemedicine enhanced chronic heart failure disease management: A meta-analysis.

Background Previous reviews have investigated the effectiveness of telemedicine in the treatment of heart failure (HF). Dependent variables have included hospitalisations, mortality rates, disease knowledge and health costs. Few reviews, however, have examined the variable of health-related quality of life (QoL).