Methodological considerations in evaluating eHealth interventions.

Advances in information and communication technologies shape consumers' attitudes towards engagement in their own health and their interface with the health-care system. The use of eHealth tools holds promise for supporting and enabling health behaviour change and the prevention and management of chronic diseases. The authors review issues related to study design, treatment implementation, and outcome measurement in eHealth trials, providing examples from the literature and from their own ongoing studies. Selection of a comparison group and design considerations related to participant preferences are based on the state of the science and current practice in the particular field. Randomized designs allow for control of selection bias and are favoured in both efficacy and effectiveness trials of eHealth interventions. Depending on the choice of comparison groups, eHealth applications must be fairly robust to demonstrate their efficacy above and beyond active controls. Strategies to ensure treatment fidelity and ongoing participant engagement can be challenging and are not always successful. Patient-reported outcomes are common to eHealth studies. Other outcomes, such as the costs associated with new eHealth applications, are equally if not more important for decision-makers. This discussion is intended to inform future trials and thereby serve to advance the science of eHealth.

Promoting excellence in end-of-life care in ALS.

The type and quality of end-of-life care varies greatly in ALS; the time to initiate end-of-life care is not defined, and decision making is hampered by logistical and financial barriers. There has been no systematic review of these issues in ALS. The goals of this initiative are to: 1) improve end-of-life care for patients with ALS and families based on what limited evidence is available; 2) increase awareness, interest, and debate on the end-of-life care in ALS; and 3) identify areas needed for new prospective clinical research. The ALS Peer Workgroup reviewed the literature and 1) identified the current state of knowledge, 2) analysed the gaps in care, and 3) provided recommendations for standard of care and future research. It was shown that areas of investigation are needed on the incorporation of an interdisciplinary approach to care in ALS that includes: psychosocial evaluation and spiritual care; the use of validated instruments to assess patient and caregiver quality of life; and the establishment of proactive caregiver programs. Several public policy changes that will improve coverage for medical care, hospice, and caregiver costs are also reviewed. More clinical evidence is needed on how to provide optimal end-of-life care specifically in ALS.