Incorporation of telehealth into a multidisciplinary ALS Clinic: feasibility and acceptability

<p><i>Objective</i>: The practice of telehealth in the care of patients with ALS has received little attention, but has the potential to change the multidisciplinary care model. This study was carried out to assess the feasibility and acceptability of telehealth for ALS care via real-time videoconferencing from the clinic to patients’ homes. <i>Methods</i>: Patients and caregivers engaged in live telehealth videoconferencing from their homes with members of a multidisciplinary ALS care team who were located in an ALS clinic, in place of their usual in-person visit to the clinic. Participating patients, their caregivers, and health care providers (HCPs) completed surveys assessing satisfaction with the visit, quality of care, and confidence with the interface. Mixed methods analysis was used for survey responses. <i>Results</i>: Surveys from 11 patients, 12 caregivers, and 15 HCPs were completed. All patients and caregivers, and most HCPs, agreed that the system allowed for good communication, description of concerns, and provision of care recommendations. The most common sentiment conveyed by each group was that telehealth removed the burdens of travel, resulting in lower stress and more comfortable interactions. Caregivers and HCPs expressed more concerns than patients about the ways in which telehealth fell short of in-person care. <i>Conclusions</i>: Telehealth was generally viewed favourably by ALS patients, caregivers, and multidisciplinary team members. Improvements in technology and in methods to provide satisfactory remote care without person-to-person contact should be explored.</p

Pain in amyotrophic lateral sclerosis: Patient and physician perspectives and practices

<p>Our objective was to better understand the experience and impact of pain on ALS patients in the U.S., and to survey ALS physicians on their pain assessment and management practices. Individuals with ALS were invited to complete an online survey of pain in ALS. ALS specialist physicians were sent an e-mail survey about their experiences in evaluating and managing patients’ pain. Nearly 75% of patients with ALS reported significant pain, and most thought that ALS was the source of at least some of this pain. Pain intensity scores (mean 3.9/10) and pain interference scores (mean 4.3/10) were moderate on average, but nearly 80% of participants were using pain medication, including 22% using opioids. Nearly 25% of patients thought they needed stronger pain medication than they were receiving. Physicians generally assess and manage pain in ALS patients, but few use standardized assessment tools. Nearly two-thirds felt that there is a need for better pain management practices and more than one-third felt better training was needed. In conclusion, pain in patients with ALS is not always well controlled. Improvement in care may be facilitated by a more standardized approach to evaluation, and by additional education and training of ALS health care professionals.</p

Hair and eye colour analysis based on the HIrisPlex system, results from bone samples A and B, and person C.

<p>Hair and eye colour analysis based on the HIrisPlex system, results from bone samples A and B, and person C.</p

Different stages of the facial reconstruction.

<p>Different stages of the facial reconstruction.</p

Prediction probabilities for hair colour categories and shade, as well as eye colour, for the four options of bone sample A.

<p>Prediction probabilities for hair colour categories and shade, as well as eye colour, for the four options of bone sample A.</p

CT based panoramic radiograph of the maxillary (top) and mandibular dentition (bottom).

<p>Two teeth have been extracted before radiographic examination (right first and left second mandibular molar), while the left mandibular wisdom tooth, whose clinical crown was completely destroyed, was not in its alveolus, and both maxillary first molars have been lost intra vitam. Radiographically visible deep carious lesions are shown by large arrows; small carious lesions that are only visible macroscopically are shown by small arrows.</p

Comparison of the facial reconstruction with the portrait of Jörg Jenatsch.

<p>A) Raw facial reconstruction, performed without influence of the portrait. B) The same hairstyle superimposed on the facial reconstruction as in the portrait. C) Original portrait of Jörg Jenatsch (Courtesy of Swiss Embassy in Paris, France).</p

Tufts of blood-soaked brownish-black shoulder-long hair from the back of the head and both temples, isolated during the first exhumation in 1959.

<p>The hair colour was determined by Hug [<a href="http://www.plosone.org/article/info:doi/10.1371/journal.pone.0168014#pone.0168014.ref011" target="_blank">11</a>] as No. W/X according to the colour scheme in ref. [<a href="http://www.plosone.org/article/info:doi/10.1371/journal.pone.0168014#pone.0168014.ref012" target="_blank">12</a>], the hair shape as narrow-waved (kymatotrich) according to ref. [<a href="http://www.plosone.org/article/info:doi/10.1371/journal.pone.0168014#pone.0168014.ref013" target="_blank">13</a>].</p

The preserved bones of the lower extremities.

<p>The 7 x 2 cm large defect in the left femoral shaft resulted from DNA sampling. Scale bar 10 cm.</p

Anteroposterior radiograph of the skull.

<p>Fracture lines are emphasized with white lines. Scale bar 3 cm.</p