Abstract
People with rheumatic and musculoskeletal diseases (RMDs) are facing several challenges during the COVID-19 pandemic, such as poor access to regular health services and drug shortages, ...particularly in developing countries. COVID-19 represents a syndemic, synergistic condition that interacts with and exacerbates pre-existing diseases such as RMDs, other co-morbidities and social conditions. The emerging evidence on both biological and non-biological factors implicated in worse outcomes in people with RMDs affected by the COVID-19 pandemic, whether infected by the virus or not, calls for the need to use more novel and holistic frameworks for studying disease. In this context, the use of a syndemic framework becomes particularly relevant. We appeal for a focus on the identification of barriers and facilitators to optimal care of RMDs in the context of the COVID-19 pandemic, in order to tackle both the pandemic itself and the health inequities inherent to it.
Big data analytics and processing through artificial intelligence (AI) are increasingly being used in the health sector. This includes both clinical and research settings, and newly in specialties ...like rheumatology. It is, however, important to consider how these new methodologies are used, and particularly the sensitivities associated with personal information. Based on current applications in rheumatology, this article provides a narrative review of the bioethical perspectives of big data. It presents examples of databases, data analytic methods, and AI in this specialty to address four main ethical issues: privacy and confidentiality, informed consent, the impact on the medical profession, and justice. The use of big data and AI processing in healthcare has great potential to improve the quality of clinical care, including through better diagnosis, treatment, and prognosis. They may also increase patient and societal participation and engagement in healthcare and research. Developing these methodologies and using the information generated from them in line with ethical standards could positively affect the design of global health policies and introduce a new phase in the democratization of health.
Key Points
• Current applications of big data, data analytics, and AI in rheumatology—including registries, machine learning algorithms, and consumer-facing platforms—raise issues in four main bioethical areas: privacy and confidentiality, informed consent, the impact on the medical profession, and justice.
• Bioethical concerns about rheumatology registries require careful consideration of privacy provisions, set within the context of local, national, and regional law.
• Machine learning and big data aid diagnosis, treatment, and prognosis, but the final decision about the use of information from algorithms should be left to rheumatology specialists to maintain the promise of fiduciary obligations in the physician–patient relationship.
• International collaboration in big data projects and increased patient engagement could be ways to counteract health inequalities in the practice of rheumatology, even on a global scale.
Admission of terminally ill patients into pediatric palliative care remains a challenge in Mexico and Latin America, despite the multiple benefits of early transfer. In this context the trajectories ...in search of health care of patients and caregivers have not been documented. Therefore, the objective of this study was to describe and analyze the experiences of primary caregivers and family members of pediatric patients in the palliative care unit of a Children's Hospital in Mexico, between October 19, 2019, and January 19, 2022. We used the framework of health pilgrimage, which comprises the transformative search of healing for patients, focusing on health barriers and the necessary displacement in search of care. With information obtained through interviews, we reconstructed the pilgrimages in search of health care navigating the Mexican healthcare system. Furthermore, we describe the experience of the primary caregiver accompanying the sick child during their journey to palliative care. We recount the adverse factors associated with this pilgrimage, such as the emotional and socioeconomic impact on primary and secondary caregivers.
•Pilgrimage is a conceptual framework to describe the patient journey.•Pediatric Palliative Care is challenge in Low-middle countries.•Pilgrimage allowed understanding the adverse factors associated with pilgrimage on caregivers.
Objective
Systemic lupus erythematosus (SLE) disproportionately affects Latin American and Latino populations, with worse outcomes compared to nonminority populations. Understanding patients' views ...is critical to provide culturally competent care. The objective of this research is to analyze lived experiences with SLE from comments made by Latin American and Latino patients, and their relatives and friends, on the public Facebook group “Hablemos de Lupus” (in English: “Let's Talk about Lupus”).
Methods
Deidentified narratives posted as a reaction to the most popular resources shared by the page were extracted using the Facepager application. We conducted a thematic analysis under an interpretative medical anthropology framework.
Results
Five core themes were demonstrated by social media comments: lived experiences with lupus, religious/spiritual thoughts, metaphors, heredity, and experiences of family and friends. Being diagnosed with lupus is perceived as a life‐changing event. The fluctuating course of the disease causes uncertainty, and the perception of invisibility within the patient's social circle generates feelings of being misunderstood. Faith and spiritual thoughts are coping strategies. Patients use metaphors about the disease's meaning and their lived experiences (the purple butterfly, not belonging, bellicose metaphors) to communicate with others. Relatives and friends are impacted by their loved one's distress.
Conclusion
Patients perceive lupus as an unpredictable illness and use metaphors to foster empathy and communicate their experiences to others. Religion is as important as medical treatment to cope with the disease, and the experience of having lupus extends to family and friends. Findings can be used to improve physician–patient communication and lupus education campaigns in the Latin American and Latino population.
Introduction
Gout is the most common inflammatory arthritis, but was not considered in most COVID-19 and rheumatic diseases reports. Our aim was to describe changes in clinical data, treatment, ...function and quality of life for gout patients during COVID-19 pandemic.
Methods
Prospective, descriptive and analytical study of 101 consecutive gout (ACR/EULAR 2015) patients from our clinic evaluated during pandemic by phone call (
n
=52) or phone call + face-to-face (
n
=68) that accepted to participate. Variables are demographics, clinical and treatment data, HAQ, EQ5D questionnaires and COVID-19-related data. Patients were divided in two groups: flare (
n
=36) or intercritical gout (
n
=65) also; available pre-pandemic data was obtained from 71 patients. Statistical analyses are
X
2
, paired
t
-test and Wilcoxon test.
Results
Included gout patients were males (95.8%), mean (SD) age 54.7 (10.7) years and disease duration 16.4 (9.8) years; 90% received allopurinol, 50% colchicine as prophylaxis and 25% suspended ≥ 1 medication. Comparison of pre-pandemic vs pandemic data showed > flares (4.4% vs 36%,
p
=0.01), more flares in the last 6 months: 0.31 (0.75) vs 1.71 (3.1), (
p
=0.004 and > urate levels: 5.6 (1.7)vs 6.7 (2.2) mg/dL,
p
=0.016. Unexpectedly, function and quality-of-life scores improved: HAQ score 0.65 (2.16) vs 0.12 (0.17),
p
= 0.001. Seven patients were COVID-19-confirmed cases; they had significantly more flares, higher urate levels and lower allopurinol doses and two died.
Conclusions
In gout patients, flares were 9 times more frequent during pandemic also, they had increased urate levels but led to an unexpected improvement in HAQ and functionality scores. Resilience and lifestyle changes in gout during COVID-19 pandemic require further studies.
Key Points
• COVID-19 pandemic is associated with 4 times more flares in gout patients.
• Increased flares were also seen in previously well-controlled gout patients.
• Increased serum urate levels were also found in gout patients during pandemic.
• In our gout clinic, 8/101 patients were diagnosed as COVID-19+, and two of them died.
Epidemiological data from Mexico have documented an increase in heroin use in the last decade. However, there is no comprehensive care strategy for heroin users, especially those who have been ...accused of a crime. The objective of this study was to describe the heroin and methadone use of intravenous heroin users of both sexes who have been in jail, to offer evidence for the formulation of health policy.
This study used an ethnographic approach, with open-ended interviews carried out from 2014 to the present. Heroin users of both sexes attending a private methadone clinic in Mexico City were invited to participate. The sample was non-probabilistic. All interviews were audiotaped and transcribed, and narratives were analyzed using thematic analysis.
Participants in this study were 33 users of heroin, two of them women, who had been in prison. They ranged in age from 33 to 62 years, had used heroin for a period of 13-30 years, and were from three states: Michoacan, Oaxaca, and Mexico City. Three principal categories of analysis were structured: 1. Pilgrimage for help (dynamics of the drama of suffering, pain, and time through health care spaces); 2) methadone use as self-care; and 3) accessibility to methadone treatment. The impossibility of access to methadone treatment is a condition which motivates users in their journey. The dynamics of methadone use are interpreted as a form of self-care and care to avoid substance use. Reducing the psychological, physical, and harmful effects of the substance allows them to perform daily activities. The inability to access treatment leads to a significant effect on users who experience structural violence.
Compassionate methadone treatment and holistic attention should be considered as a way to meet patients' needs and mitigate their suffering, based on public health policy that allows for human rights-based care.
Previous models that assess quality-of-Life (QoL) in patients with rheumatic diseases have a strong biomedical focus. We evaluated the impact of COVID-19 related-health care interruption (HCI) on the ...physical, psychological, social relationships and environment QoL-dimensions, and explored factors associated with QoL when patients were reincorporated to the outpatient clinic, and after six-month follow-up.
Study phase-1 consisted of a COVID-19 survey administered from June 24th-October 31st 2020, to outpatients with rheumatic diseases who had face-to-face consultation at outpatient clinic reopening. Study phase-2 consisted of 3 consecutive assessments of patient´s QoL (WHOQOL-BREF), disease activity/severity (RAPID-3), and psychological comorbidity/trauma (DASS-21 and IES-R) to patients from phase-1 randomly selected. Sociodemographic, disease and treatment-related information, and comorbidities were obtained. Multiple linear regression analysis identified factors associated with the score assigned to each WHOQOL-BREF dimension.
Patients included (670 for phase-1 and 276 for phase-2), had primarily SLE and RA (44.2% and 34.1%, respectively), and all the dimensions of their WHOQOL-BREF were affected. There were 145 patients (52.5%) who referred HCI, and they had significantly lower dimensions scores (but the environment dimension score). Psycho-emotional factors (primarily feeling confused, depression and anxiety), sociodemographic factors (age, COVID-19 negative economic impact, years of scholarship, HCI and having a job), and biomedical factors (RAPID-3 score and corticosteroid use) were associated with baseline QoL dimensions scores. Psycho-emotional factors showed the strongest magnitude on dimensions scores. Most consistent predictor of six-month follow-up QoL dimensions scores was each corresponding baseline dimension score, while social determinants (years of scholarship and having a job), emotional factors (feeling bored), and biomedical aspects (RAPID 3) had an additional impact.
HCI impacted the majority of patient´s QoL dimensions. Psycho-emotional, sociodemographic and biomedical factors were consistently associated with QoL dimensions scores, and these consistently predicted the QoL trajectory.
To evaluate the validity, reliability, and responsiveness to change of the 12-item Knee injury and Osteoarthritis Outcome Score (KOOS) Spanish version questionnaire. This study was based on a ...questionnaire validation design. A cross-sectional survey of 199 patients with knee osteoarthritis (KOA) and ten healthy controls was studied to evaluate the validity and reliability of KOOS-12. One hundred and sixteen patients were assessed for test-retest reliability, and 38 patients were included for a responsiveness assessment. Structural validity was assessed by the confirmatory factor analysis (CFA). Item response theory-based methods were used to determine the performance of the items. Internal consistency reliability was appropriate for all scales (Cronbach’s alpha = 0.85–0.94). The intra-class correlation coefficient of KOOS-12 scales ranged from 0.60 to 0.71. The CFA and generalized partial credit model showed that KOOS-12 scales presented a good overall model fit. No differential item functioning was found. Convergent validity was demonstrated by strong correlations (Spearman’s rho ≥ 0.70) with KOOS, International Knee Documentation Committee subjective knee evaluation form (IKDC), and Knee Intermittent and Constant Osteoarthritis Pain (ICOAP). Known-groups validity showed that KOOS-12 well discriminated subgroups of patients (radiographic severity and nutritional status). Standardized response means for KOOS-12 scales were ≥ 0.75. Changes in KOOS-12 scales had a moderate to strong correlation (Pearson’s
r
≥ 0.40) with the changes in the KOOS, ICOAP, and IKDC scales. The KOOS-12 Spanish version is a valid, reliable, and responsiveness to change questionnaire to measure patients’ opinions about their knee and associated problems in Mexican subjects with KOA.
Key Points
•
KOOS-12 is a short self-reported measure that assesses patient’s opinions about the difficulties they experience due to problems with their knee and also covers aspects of pain, functional limitations, and knee-related quality of life.
• The Spanish version of KOOS-12 questionnaire is a valid instrument for measuring the patients’ opinions about their knee and associated problems, and is both reliable and responsiveness to change
.
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