Development of a digital toolkit to improve quality of life of patients with systemic lupus erythematosus

Leung, Jerik; L, Kloos; Kim, Alfred H.J.; Baker, Elizabeth A.

doi:10.1177/20552076211033423

Cited by 7 publications

(6 citation statements)

References 50 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Although clinical,15 16 financial, technological and cultural17 challenges associated with telerheumatology exist for both patients and healthcare providers, virtual appointments can reduce geographic barriers18 and improve access to specialised care 16. During the pandemic, telerheumatology15 and other digital interventions (eg, professionally moderated electronic applications19 20) were well-received by patients,15 16 21 and fewer missed appointments were reported compared with in-person visits during and prior to the pandemic 22. Integrating remote appointments into clinical practice is a feasible and accessible option to improve patient-centred care and communication with trusted health information sources.…”

Section: Discussionmentioning

confidence: 99%

Health information use by patients with systemic lupus erythematosus (SLE) pre and during the COVID-19 pandemic

et al. 2022

View full text Add to dashboard Cite

ObjectiveWe conducted an international survey of patients with SLE to assess their access, preference and trust in various health information sources pre-COVID-19 and during the COVID-19 pandemic.MethodsPatients with SLE were recruited from 18 observational cohorts, and patients self-reporting SLE were recruited through five advocacy organisations. Respondents completed an online survey from June 2020 to December 2021 regarding the sources of health information they accessed in the 12 months preceding (pre-11 March 2020) and during (post-11 March 2020) the pandemic. Multivariable logistic regressions assessed factors associated with accessing news and social media post-11 March 2020, and self-reporting negative impacts from health information accessed through these sources.ResultsSurveys were completed by 2111 respondents; 92.8% were female, 76.6% had postsecondary education, mean (SD) age was 48.8 (14.0) years. Lupus specialists and family physicians were the most preferred sources pre-11 March 2020 and post-11 March 2020, yet were accessed less frequently (specialists: 78.5% pre vs 70.2% post, difference −8.3%, 95% CI −10.2% to −6.5%; family physicians: 57.1% pre vs 50.0% post, difference −7.1%, 95% CI −9.2% to −5.0%), while news (53.2% pre vs 62.1% post, difference 8.9%, 95% CI 6.7% to 11.0%) and social media (38.2% pre vs 40.6% post, difference 2.4%, 95% CI 0.7% to 4.2%) were accessed more frequently post-11 March 2020 vs pre-11 March 2020. 17.2% of respondents reported negative impacts from information accessed through news/social media. Those outside Canada, older respondents or with postsecondary education were more likely to access news media. Those in Asia, Latin America or younger respondents were more likely to access social media. Those in Asia, older respondents, males or with postsecondary education in Canada, Asia or the USA were less likely to be negatively impacted.ConclusionsPhysicians, the most preferred and trusted sources, were accessed less frequently, while news and social media, less trusted sources, were accessed more frequently post-11 March 2020 vs pre-11 March 2020. Increasing accessibility to physicians, in person and virtually, may help reduce the consequences of accessing misinformation/disinformation.

show abstract

Section: Discussionmentioning

confidence: 99%

Health information use by patients with systemic lupus erythematosus (SLE) pre and during the COVID-19 pandemic

et al. 2022

View full text Add to dashboard Cite

show abstract

“…The capturing, aggregation, and analysis of more complete individual patient experiences, as reported by patients themselves, would result in holistic patient-centered data that are rich with actionable insights. Some work in this area-integrating the patient voice with current and future medical care while providing continuous access to high-quality DHIs-is underway with a quality of life digital toolkit [38,53] and a newer approach to patient registries. The Research Accelerated by You platform is a global registry of patients with SLE that is managed by the Lupus Foundation of America [22].…”

Section: Opportunitymentioning

confidence: 99%

“… Patient digital voices reveal that patients with SLE frequently find themselves repeating loops within and between the prediagnosis, diagnosis, and postdiagnosis stages. Continuous access to clinician-supported DHIs [ 20 - 24 , 53 ] can result in the opportunity to validate the patient experience, better inform care, and improve outcomes. The reasons for using DHIs are sourced from Figure 2 .…”

Section: Digital Health Interventions and Social Listeningmentioning

confidence: 99%

“…Some work in this area—integrating the patient voice with current and future medical care while providing continuous access to high-quality DHIs—is underway with a quality of life digital toolkit [ 38 , 53 ] and a newer approach to patient registries. The Research Accelerated by You platform is a global registry of patients with SLE that is managed by the Lupus Foundation of America [ 22 ].…”

Section: Opportunitymentioning

confidence: 99%

See 1 more Smart Citation

Listening to Patients With Lupus: Why Not Proactively Integrate the Internet as a Resource to Drive Improved Care?

Blackie¹,

Gualtieri²,

Kasturi³

2023

J Med Internet Res

View full text Add to dashboard Cite

Systemic lupus erythematosus (SLE) is a multisystem autoimmune disease. It is characterized by a broad spectrum of manifestations, depending on the affected organs and the severity of the inflammation at the time of presentation. Despite improvements in management, treatments are required on a chronic, cyclical basis; have high potential for unpleasant side effects; and deliver variable efficacy. Patients require care from multiple specialists, which can be delivered simultaneously and sporadically. Our fragmented health care system further exacerbates the disconnect between intermittent medical care and the lived experiences of patients with SLE. The goals of this research are to (1) assess the current standard of care for patients with SLE through the review of medical literature, including clinical consensus guidelines and systematic reviews; (2) assess the lived experiences of patients with lupus through the review of peer-reviewed literature on social listening, structured interviews, and data available from the open-access digital health platform PatientsLikeMe; and (3) present the perspective that the medical community has an opportunity to acknowledge and review the use of digital health interventions (DHIs) with their patients. The results of this research indicate that patients are incorporating DHIs, such as the internet and social media platforms, as critical components of their care for even the most basic of support. Although patients with SLE are depending on this support to shape their care, it is not considered a primary source of care by clinicians. Integrating the voices of patients brings valuable dimension to understanding the lived experiences of patients with SLE and the impacts of mutually dependent patient needs as patients navigate the disease in daily life. The medical community has a meaningful opportunity to leverage and recommend existing DHIs, such as web-based community platforms and web-based patient registries, at every stage of the patient journey to help patients better manage their condition. This has the potential to proactively build patient trust and well-being, reduce the underreporting of symptoms, increase shared decision-making, inform and shape clinical guidelines and future research, and improve patient outcomes.

show abstract

“…Considering the high clinical variability, inadequate treatment options, and poor HRQoL of patients, understanding the perspectives and experiences of patients with SLE and CLE may be critical for developing effective therapies and improving disease management [13][14][15]. In the context of drug development, regulatory bodies and health care decision makers are emphasizing patient-focused drug development, which involves actively seeking and incorporating patients' perspectives when designing interventions that can meet their needs, improve outcomes, and enhance the overall patient experience [16].…”

Section: Introductionmentioning

confidence: 99%

Exploring the Perspectives of Patients Living With Lupus: Retrospective Social Listening Study

Spies,

Andreu,

Hartung

et al. 2024

JMIR Form Res

View full text Add to dashboard Cite

Background Systemic lupus erythematosus (SLE) is a chronic autoimmune inflammatory disease affecting various organs with a wide range of clinical manifestations. Cutaneous lupus erythematosus (CLE) can manifest as a feature of SLE or an independent skin ailment. Health-related quality of life (HRQoL) is frequently compromised in individuals living with lupus. Understanding patients’ perspectives when living with a disease is crucial for effectively meeting their unmet needs. Social listening is a promising new method that can provide insights into the experiences of patients living with their disease (lupus) and leverage these insights to inform drug development strategies for addressing their unmet needs. Objective The objective of this study is to explore the experience of patients living with SLE and CLE, including their disease and treatment experiences, HRQoL, and unmet needs, as discussed in web-based social media platforms such as blogs and forums. Methods A retrospective exploratory social listening study was conducted across 13 publicly available English-language social media platforms from October 2019 to January 2022. Data were processed using natural language processing and knowledge graph tagging technology to clean, format, anonymize, and annotate them algorithmically before feeding them to Pharos, a Semalytix proprietary data visualization and analysis platform, for further analysis. Pharos was used to generate descriptive data statistics, providing insights into the magnitude of individual patient experience variables, their differences in the magnitude of variables, and the associations between algorithmically tagged variables. Results A total of 45,554 posts from 3834 individuals who were algorithmically identified as patients with lupus were included in this study. Among them, 1925 (authoring 5636 posts) and 106 (authoring 243 posts) patients were identified as having SLE and CLE, respectively. Patients frequently mentioned various symptoms in relation to SLE and CLE including pain, fatigue, and rashes; pain and fatigue were identified as the main drivers of HRQoL impairment. The most affected aspects of HRQoL included “mobility,” “cognitive capabilities,” “recreation and leisure,” and “sleep and rest.” Existing pharmacological interventions poorly managed the most burdensome symptoms of lupus. Conversely, nonpharmacological treatments, such as exercise and meditation, were frequently associated with HRQoL improvement. Conclusions Patients with lupus reported a complex interplay of symptoms and HRQoL aspects that negatively influenced one another. This study demonstrates that social listening is an effective method to gather insights into patients’ experiences, preferences, and unmet needs, which can be considered during the drug development process to develop effective therapies and improve disease management.

show abstract

Development of a digital toolkit to improve quality of life of patients with systemic lupus erythematosus

Cited by 7 publications

References 50 publications

Health information use by patients with systemic lupus erythematosus (SLE) pre and during the COVID-19 pandemic

Health information use by patients with systemic lupus erythematosus (SLE) pre and during the COVID-19 pandemic

Listening to Patients With Lupus: Why Not Proactively Integrate the Internet as a Resource to Drive Improved Care?

Exploring the Perspectives of Patients Living With Lupus: Retrospective Social Listening Study

Contact Info

Product

Resources

About