Patients’ Perspectives of Telemedicine Appointments for Psoriatic Arthritis During The COVID-19 Pandemic: Results of a Patient-Driven Pilot Survey

Abstract BackgroundOver recent years the lack of patient involvement in the design, set-up and implementation of clinical research studies has been well recognised; as such there has been a drive within research communities to increase patient participation. Anecdotally, patient perspectives on telemedicine differ widely, with variation in whether patients feel remote consultations are beneficial. By means of a patient-driven survey, we aimed to formally evaluate patient perspectives on its benefits and pitfalls, focusing on patients with psoriatic arthritis (PsA).MethodsAn e-survey was developed by two patient representatives on the BritPACT steering committee, with a view to determining unmet needs and the perceived impact on clinical care of virtual consultations amongst patients with PsA. Results128 patients responded to the e-survey. 109 patients rated the effectiveness of their telemedicine appointment and, of these, 18% felt their virtual consultation was very/extremely effective compared to a face-to-face consultation and 49% felt it was somewhat/equally as effective; furthermore, 48% (51/107) felt that such virtual consultations would be of benefit to them after the pandemic. 36% of respondents felt their virtual consultation was not as effective as a face-to-face review. Themes identified from open-ended questions included the lack of visual cues, lack of physical examination and effect on rapport and ease of open communication as the main pitfalls of virtual consultations. Patients with well-controlled symptoms appeared more satisfied with remote reviews compared to those with active disease, though on the whole respondents recognised the benefits, such as saving travel time and costs. Those who had an established relationship with their health professional appeared less concerned regarding virtual consultations though a recurring view was that newly diagnosed patients should have face-to-face appointments to build rapport and improve symptom control at an early stage.ConclusionsOverall patients’ perspectives on virtual consultations varied widely though patients with well-controlled symptoms and those who had a previously established relationship with their healthcare professionals and well-controlled disease appeared more satisfied with remote reviews. Patient-driven surveys may improve our true understanding of patients’ perspectives by improving engagement and honesty compared to surveys constructed by healthcare providers.

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Defining a “Good Death” in Pediatric Oncology: A Mixed Methods Study of Healthcare Providers

Children ◽

10.3390/children7080086 ◽

2020 ◽

Vol 7 (8) ◽

pp. 86

Author(s):

Mallory R. Taylor ◽

Krysta S. Barton ◽

Jenny M. Kingsley ◽

Julia Heunis ◽

Abby R. Rosenberg

Keyword(s):

Mixed Methods ◽

Pediatric Oncology ◽

Clinical Care ◽

Symptom Control ◽

Healthcare Providers ◽

Mixed Methods Study ◽

Good Death ◽

Theory Approach ◽

Years Of Experience ◽

Eol Care

Delivering optimal end-of-life (EOL) care to children and adolescents is a healthcare priority, yet relatively little is known about what patients, families, and healthcare providers (HCPs) consider “best” practices. The objective of this study was to identify factors that pediatric oncology HCPs consider important for EOL care. This was a cross-sectional mixed methods study. Participants were multidisciplinary pediatric oncology staff who completed surveys and participated in semi-structured qualitative interviews. Interviews were analyzed using a modified grounded theory approach. Provider statements were compared based on years of experience (≤10 or >10 years) and discipline (non-physician or physician). A total of n = 19 staff (74% female) enrolled, including physicians (n = 8), advanced practice providers (n = 4), nurses (n = 2), music/art therapists (n = 2), physical therapists (n = 1), educators (n = 1), and chaplains (n = 1). Most HCPs identified communication, symptom control, and acceptance as features of a “good” death. Compared to physicians, non-physicians focused on relationships (67% vs. 33%, p = 0.007); HCPs with ≤10 years of experience (n = 11) more frequently identified the benefits of a multidisciplinary team (74% vs. 26%, p = 0.004). This study identified many common HCP-defined components of “good” pediatric EOL care in addition to some differing perspectives depending on discipline and experience. Incorporating diverse HCP perspectives with those of the patient and family can guide contemporary high-quality pediatric EOL clinical care and education.

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Supporting the Use of Rudimentary Vocalizations

Perspectives on Augmentative and Alternative Communication ◽

10.1044/aac23.3.132 ◽

2014 ◽

Vol 23 (3) ◽

pp. 132-139 ◽

Cited By ~ 1

Author(s):

Lauren Zubow ◽

Richard Hurtig

Keyword(s):

Rett Syndrome ◽

Visual Cues ◽

Acoustic Analysis ◽

Eye Gaze ◽

Research Question ◽

Primary Research ◽

Multiple Modalities ◽

Face To Face ◽

Perceptual Judgments ◽

The Face

Children with Rett Syndrome (RS) are reported to use multiple modalities to communicate although their intentionality is often questioned (Bartolotta, Zipp, Simpkins, & Glazewski, 2011; Hetzroni & Rubin, 2006; Sigafoos et al., 2000; Sigafoos, Woodyatt, Tuckeer, Roberts-Pennell, & Pittendreigh, 2000). This paper will present results of a study analyzing the unconventional vocalizations of a child with RS. The primary research question addresses the ability of familiar and unfamiliar listeners to interpret unconventional vocalizations as “yes” or “no” responses. This paper will also address the acoustic analysis and perceptual judgments of these vocalizations. Pre-recorded isolated vocalizations of “yes” and “no” were presented to 5 listeners (mother, father, 1 unfamiliar, and 2 familiar clinicians) and the listeners were asked to rate the vocalizations as either “yes” or “no.” The ratings were compared to the original identification made by the child's mother during the face-to-face interaction from which the samples were drawn. Findings of this study suggest, in this case, the child's vocalizations were intentional and could be interpreted by familiar and unfamiliar listeners as either “yes” or “no” without contextual or visual cues. The results suggest that communication partners should be trained to attend to eye-gaze and vocalizations to ensure the child's intended choice is accurately understood.

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Topical issues of medical malpractices

Orvosi Hetilap ◽

10.1556/oh.2014.29970 ◽

2014 ◽

Vol 155 (38) ◽

pp. 1510-1516

Author(s):

Tamás Heiner ◽

Tímea Barzó

Keyword(s):

Medical Malpractice ◽

Medical Service ◽

Early Stage ◽

Healthcare Providers ◽

Healthcare Services ◽

Practical Experience ◽

Current Analysis ◽

Breach Of Contract ◽

Judicial Decisions ◽

Contractual Relationship

The number of medical malpractice lawsuits filed each year in Hungary has considerably increased since 1990. The judicial decisions and practices on determining and awarding wrongful damages recoverable for medical malpractices in the Hungarian civil law have been developing for decades. In the meantime, a new Hungarian Civil Code (Act V of 2013) has entered into force, which among others, necessitates the revaluation of assessment of damages recoverable for medical malpractices. There are two main areas where fundamental changes have been introduced, which may significantly affect the outcome of medical malpractice lawsuits in the future. In the early stage of medical malpractices it was unclear whether the courts had to consider either the contractual relationship between patients and healthcare providers (contractual liability) or general codal articles on damages arising from non-contractual liability/torts (delictual liability) in their judgement delivered in the cases. Both the theoretical and practical experience of the last ten years shows that healthcare services agreements are concluded between healthcare providers and patients with the aim and intention to provide appropriate professional healthcare services to patients, which meet patients’ interests and wishes. The medical service is violated if it fails to meet patients’ interests and wishes as well as the objectives of the agreement. Since the new legislation implies a stricter liability for damages in the case of breach of contract and stricter rules for exempting the party in breach from compensation obligations, the opportunities to exempt healthcare providers from these obligations have become limited compared to previous regulations. This modification, which was aimed at further integrating the established judicial practices into legislation, stipulates the application of the rules for liability for damages resulting from medical malpractice in non-contractual situations. This paper analyses dogmatic and practical problems related to this topic. Another important area of current analysis is the institution of injury fees, which replaced the reimbursement of non-pecuniary damages. The mere fact of infringement allows setting injury fees. Taking into consideration the current resources in staff and equipment available in healthcare, this regulation may promote claims for injury fees impartial. Consequently, courts will have to apply other criteria when judgment in ‘trivial cases’, which might not require legal assessment, is delivered. Orv. Hetil., 2014, 155(38), 1510–1516.

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AB0903-HPR DURATION OF TELEPHONE CONSULTATIONS AMONGST RHEUMATOLOGY PRACTITIONERS IN A DISTRICT GENERAL HOSPITAL - ADAPTING TO REMOTE CONSULTATION IN A COVID-19 PANDEMIC

Annals of the Rheumatic Diseases ◽

10.1136/annrheumdis-2021-eular.1282 ◽

2021 ◽

Vol 80 (Suppl 1) ◽

pp. 1474.1-1474

Author(s):

L. Parker ◽

F. Coldstream

Keyword(s):

General Hospital ◽

Controlled Trial ◽

Clinical Care ◽

District General Hospital ◽

British Society ◽

Nice Guideline ◽

Face To Face ◽

Co Morbidity ◽

Randomised Controlled ◽

Remote Consultations

Background:The Covid-19 pandemic has resulted in a rapid adoption of remote consultations in order to limit face to face clinical contact wherever appropriate, as recommended by the British Society for Rheumatology. The same clinic templates which existed for face-to-face encounters have been retrospectively adapted, without consideration of any potential difference in duration of consultations. Rheumatology practitioners from a variety of clinical backgrounds work alongside the rheumatology consultants, providing clinical care to patients with both inflammatory arthritis and connective tissue disease.Objectives:To record the duration of all scheduled telephone consultations carried out by advances rheumatology practitioners in a 4-week period.Methods:All scheduled telephone clinic encounters over a 4-week period were timed and the duration recorded in a spreadsheet. Data was collected in real time by all 8 rheumatology advanced practitioners working within the rheumatology department of a district general hospital, following each clinic episode.Results:Data was recorded from a total of 337 clinic appointments. Of these, 317 (94%) were booked as routine, 3 (0.9%) as urgent, 4 (1.2%) were expedited following an advice line contact, and 13 (3.9%) no data was recorded. 28 (8%) of the patients did not answer when contacted. 80 (24%) clinic appointments lasted 15 minutes or less, 186 (55%) lasted 16 - 30 minutes, 37 (11%) lasted 31 - 45 minutes, and 6 (2%) lasted 46 - 60 minutes. The average duration was 22 minutes.Conclusion:Within this department, remote consultations appear to have a similar duration when compared against the traditional clinic template for a fully face-to-face clinic, with some encounters lasting significantly longer than the planned duration. This would appear to differ to telephone consultations used in other settings, such as general practice where the duration is reportedly shorter1. This may be representative of the additional complexity and co-morbidity of a typical rheumatology patient, or due to the multi-faceted nature of a rheumatology follow-up appointment2. Although remote consultations are effective in limiting risk of exposure to Covid-19, they may not offer a quicker or more efficient service compared with the face-to-face model. Further study in this field is required to evaluate this widely adopted new pattern of working.References:[1]Pinnock H, Bawden R, Proctor S, Wolfe S, Scullion J, Price D, Sheikh A. Accessibility, acceptability, and effectiveness in primary care of routine telephone review of asthma: pragmatic, randomised controlled trial. BMJ. 2003 Mar 1;326(7387):477-9. doi: 10.1136/bmj.326.7387.477. PMID: 12609944; PMCID: PMC150181.[2]National Institute for Health and Care Excellence (NICE) (2018) rheumatoid arthritis in adults: management (NICE Guideline NG100). Available at https://www.nice.org.uk/guidance/ng100 [Accessed 05 January 2021].Disclosure of Interests:None declared

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589 Early stage, low grade endometrial adenocarcinoma in reproductive aged women. an evaluation of patient perspectives of diagnosis, treatment decision making, management, fertility and survivorship: a qualitative study

10.1136/ijgc-2020-esgo.213 ◽

2020 ◽

Author(s):

Alina Roman ◽

Michelle Peate ◽

Yasmin Jayasinghe ◽

Orla M Mcnally

Keyword(s):

Decision Making ◽

Qualitative Study ◽

Early Stage ◽

Endometrial Adenocarcinoma ◽

Treatment Decision ◽

Patient Perspectives ◽

Low Grade ◽

Treatment Decision Making ◽

Reproductive Aged Women

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AB0546 5 YEARS FOLLOW-UP OF PSORIATIC ARTHRITIS PATIENTS TREATED ACCORDING TREAT-TO-TARGET STRATEGY. PRELIMINARY RESULTS

Annals of the Rheumatic Diseases ◽

10.1136/annrheumdis-2021-eular.1985 ◽

2021 ◽

Vol 80 (Suppl 1) ◽

pp. 1306.1-1306

Author(s):

P. Tremaskina ◽

E. Loginova ◽

T. Korotaeva ◽

S. Glukhova ◽

A. Lila

Keyword(s):

Psoriatic Arthritis ◽

Disease Activity ◽

Standard Care ◽

Early Stage ◽

Treat To Target ◽

Moderate Activity ◽

Long Term Outcomes ◽

Mean Values

Background:The concept of treat to target (T2T) in psoriatic arthritis (PsA) has been established recently and already shown its benefits [1]. But the long-term outcomes of the T2T have not been studied yet.Objectives:To study 5 years (yrs) follow-up of PsA patients (pts) treated according to T2T strategy at the early stage.Methods:35 (M/F–17/18) PsA pts fulfilling CASPAR criteria, who were treated according to T2T strategy at the early stage (PsA duration≤2 yrs) within 24 months (mos) were analyzed. At the time of evaluation mean age is 42.7±11.2 yrs, median (Me) PsA duration 72 [60;95] mos, psoriasis duration 120 [88;180] mos. All pts underwent standard clinical examinations of PsA before started T2T therapy and at follow-up. Within 24 mos of T2T strategy all pts were taking Methotrexate (MTX) monotherapy in increasing dose up to 25 mg/wk and 18 out of 35 (51%) pts received MTX in combination with iTNF. When T2T study was stopped all pts were treated according to standard care with NSAIDs, bDMARDs, MTX, tsDMARDs based on PsA activity and physician decision. The number of pts achieved minimal disease activity (MDA, 5 of 7) and remission by DAPSA (≤4)/low disease activity (LDA)≤14) at the 24 mos of T2T strategy and at 5 yrs follow-up were calculated. The results are presented in the form of mean values, median, upper and lower quartiles.Results:Me duration of follow-up is 68 [53.5;81.5] mos. At 24 mos Me DAPSA 3.48 [0.45;21.76], remission by DAPSA (REM-DAPSA) were seen in 20 out of 35 (57%) pts, LDA-DAPSA in 4 (12%) pts, moderate activity (MoA) by DAPSA in 6 (17%) pts and high disease activity by DAPSA (HDA-DAPSA) in 5 (14%) pts. MDA was noted in 21 out of 35 (60%) pts. At 5 yrs Me DAPSA 7.4 [2.22;13.87], REM-DAPSA was noted in 12 (34%) pts, LDA-DAPSA in 14 (40%), MoA-DAPSA in 5 (14%), HDA-DAPSA in 4 (12%) pts. MDA was observed in 17 of 35 pts (49%). Among 20 pts who had REM-DAPSA at 24 mos only 6 pts (30%) remained in remission at 5 yrs follow-up and 12 out of 21 pts (57.14%) remained in MDA status.Conclusion:In early PsA pts remission and MDA are achievable goal of T2T strategy. But most pts lost remission/MDA after this strategy was changed to a standard care, despite being in remission/MDA status before change of therapy. Further investigations of the long-term outcomes of T2T strategy in PsA, including radiographic outcomes are needed.References:[1]Coates LC, Moverley AR, McParland L, et al. Lancet 2015; 386: 2489–98.Disclosure of Interests:None declared.

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Harnessing basic and clinic tools to evaluate SGLT2 inhibitor nephrotoxicity

AJP Renal Physiology ◽

10.1152/ajprenal.00250.2017 ◽

2017 ◽

Vol 313 (4) ◽

pp. F951-F954 ◽

Cited By ~ 9

Author(s):

Danielle L. Saly ◽

Mark A. Perazella

Keyword(s):

Early Stage ◽

Functional Decline ◽

Healthcare Providers ◽

Sglt2 Inhibitor ◽

Kidney Injury ◽

Renin Angiotensin System ◽

Sglt2 Inhibitors ◽

Diabetic Patients ◽

Chip Technology ◽

Urinary Glucose

Sodium-glucose cotransporter-2 (SGLT2) inhibitors are a new class of medications that target the transporter that reabsorbs ~90% of glucose in the S1 segment of the proximal convoluted tubule. As a result, SGLT2 inhibition increases urinary glucose excretion, effectively lowering plasma glucose levels. In addition to reducing hemoglobin A1c levels, these drugs also lower body weight, blood pressure, and uric acid levels in Type 2 diabetes mellitus (T2DM) patients. Importantly, empagliflozin has been observed to slow progression of kidney disease and reduce dialysis requirements in T2DM patients. However, the Food and Drug Administration (FDA) Adverse Events Reporting System (FAERS) has collected over 100 cases of acute kidney injury (AKI) for canagloflozin and dapagliflozin since their approval. Of the 101 patients, 96 required hospitalization, 22 required intensive care unit admission, and 15 underwent hemodialysis. The FDA now requires that AKI be listed as a potential side effect of the SGLT2 inhibitors along with cautious prescription of these drugs with other medications, such as renin-angiotensin-system antagonists, diuretics, and NSAIDs. It is unclear, however, whether this FAERS reported “AKI” actually represents structural kidney injury, as randomized, controlled trials of these drugs do not describe AKI as an adverse event despite coprescription with RAS blockers and diuretics. As a result of this FDA warning, diabetic patients with early-stage CKD may not be prescribed an SGLT2 inhibitor for fear of AKI. Thus, it is imperative to ascertain whether the reported AKI represents true structural kidney injury or a functional decline in glomerular filtration rate. We propose using readily available clinical tools with experimental biomarkers of kidney injury and kidney-on-a-chip technology to resolve this question and provide solid evidence about the AKI risk of these drugs for healthcare providers.

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Protective preparation: a process central to family caregivers of persons with mild cognitive impairment

International Psychogeriatrics ◽

10.1017/s1041610217001764 ◽

2017 ◽

Vol 30 (3) ◽

pp. 375-384 ◽

Cited By ~ 3

Author(s):

Ching-Lin Wang ◽

Li-Min Kuo ◽

Yi-Chen Chiu ◽

Hsiu-Li Huang ◽

Huei-Ling Huang ◽

...

Keyword(s):

Cognitive Impairment ◽

Mild Cognitive Impairment ◽

Family Caregivers ◽

Caregiver Burden ◽

Family Caregiving ◽

Healthcare Providers ◽

Theory Approach ◽

Face To Face ◽

The Family ◽

The Impact

ABSTRACTBackground:To develop a theoretical model explaining the longitudinal changes in the caregiving process for family caregivers of persons with mild cognitive impairment (MCI) in Taiwan.Methods:A longitudinal, grounded theory approach using in-depth face-to-face interviews and an open-ended interview guide. We conducted 42 interviews over a two-year period; each participant was interviewed at least once every six months. All participants were interviewed in their home. The participants total of 13 family caregivers of persons with MCI.Results:One core theme emerged: “protective preparation.” This reflected the family caregiving process of preparation for a further decline in cognitive function, and protection from the impact of low self-esteem, accidents, and symptoms of comorbidities for the family member with MCI. Protective preparation contained three components: ambivalent normalization, vigilant preparation, and protective management.Conclusions:Interventions to help family caregivers manage the changes in persons with MCI can reduce caregiver burden. Our findings could provide a knowledge base for use by healthcare providers to develop and implement strategies to reduce caregiver burden for family caregivers of persons with MCI.

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Abstract 247: Pilot Study Examining Heart Failure Patient Internet Use and Adherence to a Web Based Portal Designed to Support Self-Care.

Circulation Cardiovascular Quality and Outcomes ◽

10.1161/circoutcomes.6.suppl_1.a247 ◽

2013 ◽

Vol 6 (suppl_1) ◽

Author(s):

Redah Z Mahmood ◽

Judith Grossi ◽

Todd M Koelling

Keyword(s):

Computer Use ◽

Healthcare Providers ◽

Intervention Group ◽

Self Care ◽

Web Based ◽

Face To Face ◽

Clinical Events ◽

Home Based ◽

Care Information ◽

Use Of Internet

Background: Experts agree that HF patients should practice appropriate self-care behaviors to minimize the risk of adverse clinical events, including early unplanned readmissions. We sought to understand patient perceptions and adherence to a web-based system designed to support self-care of HF patients. Methods: 100 HF patients were surveyed regarding their computer use and attitudes toward using an internet based web-portal (WP) to support self-care, provide patient education, and communicate with healthcare providers (HCP’s). We then consented 42 patients to participate in a 12 week trial of using the WP to track clinical parameters (daily weights, blood pressure, sodium/fluid intake, exercise), provide links for HF self-education, and update HCP’s on their progress. Patients received a face to face teaching session on accessing and using the WP. Results: The computer use survey (N=100) demonstrated that 72% of patients reported having a computer at home, 67% used email and 71% used the internet. In the WP intervention group (N=41) only 24 (58.5%) were able to successfully access the WP and enter data during the pilot (see table 1). Conclusions: Pilot data showed a significant positive correlation (see table 1) between patients indicating use of internet to access heaIth care information (HCI) and adherence with the WP. Despite strong interest to use a home based WP for self-care and communication with providers, we found that many hurdles prevented patients from using the WP. Internet based educational tools for HF patients may be desirable, but limitations in patients’ ability to access internet based programs may ultimately render the tools ineffective.

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