Evaluation of patient satisfaction for telehealth (telephone and video) in rheumatology outpatients during COVID-19 pandemic.

BACKGROUND: Telehealth in rheumatology has been a topic of interest for many years, but the COVID-19 pandemic placed it in the forefront. AIMS: To evaluate patient perception of rheumatology telehealth and determine predictive factors for future telehealth acceptability. METHODS: A questionnaire containing 30 questions was sent to public and private rheumatology patients who attended telehealth appointments between April and May 2020. The questionnaire aimed to obtain information on baseline demographics, traditional appointment details, telehealth appointment details and appointment satisfaction using a 5-point Likert scale. Descriptive statistical analysis was conducted. RESULTS: The questionnaire was sent to 1452 patients, of whom 494 (34%) patients responded. More than 70% of responses indicated overall satisfaction in specialist care through telehealth, and 88.7% perceived this suitable during a pandemic. Less than 50% of patients were agreeable for future telehealth either through telephone or video conference after the pandemic is over. Higher odds ratio for future telehealth acceptability was associated with visual impairment, perceived cost-effectiveness and previous time lost at work for a face-to-face appointment. CONCLUSION: During the unprecedented time of the pandemic, telehealth appointments (telephone/video) assisted in providing ongoing patient care remotely, with high level of satisfaction seen in this study. The patient's experience and perception of telehealth was strongly influenced by financial incentives, and certain subgroups of patients were more accepting for future telehealth appointments. Nevertheless, low level of future telehealth acceptability also highlighted the potential dissatisfaction among patients in telehealth compared with the traditional appointments.

A Practical Approach to the Use of Conventional Synthetic, Biologic and Targeted Synthetic Disease Modifying Anti-Rheumatic Drugs for the Treatment of Inflammatory Arthritis in Patients with a History of Malignancy.

PURPOSE OF REVIEW: Conventional synthetic disease modifying anti-rheumatic drugs (csDMARDs) have been used in the treatment of inflammatory arthritis (IA) for many years. More recently, biologic (bDMARDs) and targeted synthetic (tsDMARDs) DMARDs have further improved treatment. Due to increased patient longevity and effective oncology treatment, rheumatologists often encounter patients with IA and previous malignancy. The immunosuppressive effect of DMARDs causes concern regarding impaired tumour surveillance with a potential increased risk of malignancy. We reviewed the literature regarding the risk of malignancy in patients on cs-/b-/tsDMARDS and sought to provide practical advice regarding use of these drugs in patients with previous malignancy. RECENT FINDINGS: Data from randomised controlled trials is limited as patients with pre-existing malignancy are often excluded. Reassuringly, an increasing range of "real world" data from various national b/tsDMARD registries has not provided a convincing signal that these drugs increase tumour recurrence. Nevertheless, awareness of, and adherence to, national screening guidelines for malignancy is important. Given the improvement in quality of life achieved with these novel and well-tolerated therapeutic agents, the benefit/risk profile remains overwhelmingly favourable in most patients.

A practical approach to vaccination of patients with autoimmune inflammatory rheumatic diseases in Australia.

Autoimmune inflammatory rheumatic diseases (AIIRD), such as rheumatoid arthritis, psoriatic arthritis and ankylosing spondylitis are often complicated by infection, which results in significant morbidity and mortality. The increased risk of infection is probably due to a combination of immunosuppressive effects of the AIIRD, comorbidities and the use of immunosuppressive conventional synthetic disease-modifying anti-rheumatic drugs (DMARDs) and more recently, targeted synthetic DMARDs and biologic DMARDs that block specific pro-inflammatory enzymes, cytokines or cell types. The use of these various DMARDs has revolutionised the treatment of AIIRD. This has led to a marked improvement in quality of life for AIIRD patients, who often now travel for prolonged periods. Many infections are preventable with vaccination. However, as protective immune responses induced by vaccination may be impaired by immunosuppression, where possible, vaccination may need to be performed prior to initiation of immunosuppression. Vaccination status should also be reviewed when planning overseas travel. Limited data regarding vaccine efficacy in patients with AIIRD make prescriptive guidelines difficult. However, a vaccination history should be part of the initial work-up in all AIIRD patients. Those caring for AIIRD patients should regularly consider vaccination to prevent infection within the practicalities of routine clinical practice.

Engaging older adults with dementia in creative occupations using artificially intelligent assistive technology.

Engagement in creative occupations has been shown to promote well-being for older adults with dementia. Providing access to such occupations is often difficult, as successful participation requires face-time with a person who is knowledgeable in facilitating engagement as well as access to any required resources, such as an arts studio. In response, a computer-based device, the Engaging Platform for Art Development (ePAD), was created to with the aim of enabling more independent access to art creation, ePAD is a an artificially intelligent touch-screen device that estimates a client's level of engagement and provides prompts to encourage engagement if the client becomes disengaged. ePAD is customizable such that an art therapist can choose themes and tools that they feel reflect their client's needs and preferences. This article presents a mixed-methods study that evaluated ePAD's usability by six older adult (with mild-to-moderate dementia) and art therapist dyads. Usability measures suggest that all participants found ePAD engaging but did not find prompts effective. Future development of ePAD includes improving the prompts, implementing the recommendations made by participants in this research, and long-term testing in more naturalistic art therapy contexts.

Condition-Specific Pamphlets to Improve End-of-life Communication in Long-term Care: Staff Perceptions on Usability and Use.

OBJECTIVES: This article reports findings on the usability and staff use of 5 condition- specific pamphlets of high prevalence in long-term care (LTC): dementia, heart failure, chronic obstructive pulmonary disease, renal failure, and frailty. The pamphlets were created in response to residents', families', and staff's recommendations for activating early reflections and communication about end-of-life care. DESIGN: A mixed-method (qualitative and quantitative) survey design was used. Step 1 collected survey data on the usability of the pamphlets. Step 2 collected survey data on pamphlet use. SETTINGS AND PARTICIPANTS: Two nurses with specialized palliative care training, 2 resident/family representatives, 10 condition-specific specialists, and 33 LTC palliative leads reviewed the pamphlets for usability prior to distribution. A total of 178 LTC home staff in 4 participating LTC homes reported on pamphlet use. MEASURES: Specialists and resident/family representatives were asked to provide open comments and LTC home palliative leads were asked to complete a survey on the accuracy, readability, and relevance of the pamphlets. After 6 months of distribution, all staff in participating LTC homes were asked to complete a survey on pamphlet use, usefulness, and comfort with distribution. RESULTS: The pamphlets were reportedly accurate, relevant, and easy to understand. Following 6 months of availability, most staff in LTC had read the pamphlets, found the information useful, and planned to share them. However, half of the staff questioned their role in pamphlet distribution and most had not distributed them. Regulated staff (ie, staff affiliated with a regulated profession) expressed more comfort sharing the pamphlets than care aides and support staff. CONCLUSIONS/IMPLICATIONS: Condition-specific pamphlets appear to hold promise in providing residents and families with relevant information that may activate early reflections and conversations about end-of-life care. However, structured implementation strategies, training, and discussions are required to improve staff comfort with distribution and explore roles in distribution and follow-up.

Broadening End-of-Life Comfort to Improve Palliative Care Practices in Long Term Care.

This study aimed to (1) explore how palliative care in long-term care (LTC) addresses the tensions associated with caring for the living and dying within one care community, and (2) to inform how palliative care practices may be improved to better address the needs of all residents living and dying in LTC as well as those of the families and support staff. This article reports findings from 19 focus groups and 117 participants. Study findings reveal that LTC home staff, resident, and family perspectives of end-of-life comfort applied to those who were actively dying and to their families. Our findings further suggest that eliciting residents' perceptions of end-of-life comfort, sharing information about a fellow resident's death more personally, and ensuring that residents, families, and staff can constructively participate in providing comfort care to dying residents could extend the purview of end-of-life comfort and support expanded integration of palliative principles within LTC.

Divergent roles of clock genes in retinal and suprachiasmatic nucleus circadian oscillators.

The retina is both a sensory organ and a self-sustained circadian clock. Gene targeting studies have revealed that mammalian circadian clocks generate molecular circadian rhythms through coupled transcription/translation feedback loops which involve 6 core clock genes, namely Period (Per) 1 and 2, Cryptochrome (Cry) 1 and 2, Clock, and Bmal1 and that the roles of individual clock genes in rhythms generation are tissue-specific. However, the mechanisms of molecular circadian rhythms in the mammalian retina are incompletely understood and the extent to which retinal neural clocks share mechanisms with the suprachiasmatic nucleus (SCN), the central neural clock, is unclear. In the present study, we examined the rhythmic amplitude and period of real-time bioluminescence rhythms in explants of retina from Per1-, Per2-, Per3-, Cry1-, Cry2-, and Clock-deficient mice that carried transgenic PERIOD2::LUCIFERASE (PER2::LUC) or Period1::luciferase (Per1::luc) circadian reporters. Per1-, Cry1- and Clock-deficient retinal and SCN explants showed weakened or disrupted rhythms, with stronger effects in retina compared to SCN. Per2, Per3, and Cry2 were individually dispensable for sustained rhythms in both tissues. Retinal and SCN explants from double knockouts of Cry1 and Cry2 were arrhythmic. Gene effects on period were divergent with reduction in the number of Per1 alleles shortening circadian period in retina, but lengthening it in SCN, and knockout of Per3 substantially shortening retinal clock period, but leaving SCN unaffected. Thus, the retinal neural clock has a unique pattern of clock gene dependence at the tissue level that it is similar in pattern, but more severe in degree, than the SCN neural clock, with divergent clock gene regulation of rhythmic period.