Dataset Information

Lyme Disease Patient Outcomes and Experiences; A Retrospective Cohort Study.

ABSTRACT: Lyme disease is a vector-borne illness caused by Borrelia spp. bacterium spread by ticks to humans and other mammals. Despite being prevalent in many regions of the world, there remains considerable uncertainty surrounding many aspects of the disease, and consensus on the most appropriate and effective means of treating the illness remains to be achieved. Recommendations published by the Infectious Diseases Society of America (IDSA) and the International Lyme and Associated Diseases Society (ILADS), the primary guidelines followed by health care professionals treating Lyme disease, diverge in many of their key recommendations, including treatment duration. Given this lack of consensus, surprisingly little research has been conducted on patient outcomes following different treatment approaches. In this study, patient outcomes were evaluated from a cohort of 210 Canadian Lyme disease patients seeking treatment at one US Lyme disease clinic following a treatment regimen conforming to the ILADS treatment guidelines. It was found that the majority of Lyme disease patients at the clinic responded positively to treatment and a significant (p < 0.05) decrease in symptoms was observed over time. This study, along with related studies, may help to guide physicians to provide their patients with the most effective care.

SUBMITTER: Rogerson AG

PROVIDER: S-EPMC7551198 | biostudies-literature | 2020 Sep

REPOSITORIES: biostudies-literature

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Lyme Disease Patient Outcomes and Experiences; A Retrospective Cohort Study.

Rogerson Ally G AG Lloyd Vett K VK

Healthcare (Basel, Switzerland) 20200904 3

Lyme disease is a vector-borne illness caused by <i>Borrelia</i> spp. bacterium spread by ticks to humans and other mammals. Despite being prevalent in many regions of the world, there remains considerable uncertainty surrounding many aspects of the disease, and consensus on the most appropriate and effective means of treating the illness remains to be achieved. Recommendations published by the Infectious Diseases Society of America (IDSA) and the International Lyme and Associated Diseases Socie ...[more]

PMID: 32899834

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Project description:Background: Longer time between symptom onset and treatment of Lyme disease has been associated with poor outcomes. Reducing time-to-treatment requires knowledge of risks for treatment delays. We conducted a population-based study to evaluate factors associated with delayed treatment of Lyme disease and the relation between delayed treatment and post-treatment Lyme disease syndrome (PTLDS). Methods: We mailed questionnaires to 5,314 individuals with a Lyme disease diagnosis or blood test followed by an antibiotic order in the medical record of a Pennsylvania health system from 2015 to 2017. Analyses were confined to 778 respondents who reported that they were treated for Lyme disease within the past 5 years and reported a rash and/or a positive blood test for Lyme disease. Time-to-treatment was calculated as the sum of two windows before and after seeking care for Lyme disease symptoms: time to first medical contact and time under care. We used logistic regression to evaluate factors associated with delayed time-to-treatment in each time window (>14 days vs. ≤14 days) and the association between total time-to-treatment (>30 days vs. ≤30 days) and PTLDS. We used inverse probability weighting to calculate estimates for the study's source population (5,314 individuals sent questionnaires). Results: In the source population, 25% had time to first contact >14 days, 21% had time under care >14 days, and 31% had a total time-to-treatment >30 days. Being uninsured and attributing initial symptoms to something other than Lyme disease were positively associated with delayed time to first medical contact, while seeking care at an urgent care or emergency setting (vs. primary care) was negatively associated. Diagnoses between November and April, and the absence of rash were positively associated with delays. Individuals whose treatment was delayed, defined as time-to treatment >30 days had 2.26 (95% confidence interval: 1.25, 4.05) times the odds of PTLDS as those who were treated within 30 days of symptom onset. Conclusions: In a population-based study in Pennsylvania, one-third of Lyme disease patients reported delayed treatment, which was associated with PTLDS. To improve Lyme disease outcomes, prevention efforts should aim to reduce the time before and after seeking care.

Project description:BackgroundHealthcare providers frequently struggle to provide effective care to patients with chronic Lyme-associated symptoms (chronic Lyme disease, CLD), potentially causing these patients to feel misunderstood or neglected by the healthcare system. This study is the first to use a combined medical and communication science approach, and aims to assess patients' experiences with CLD & CLD-related care, identify themes and repertories in these patients' narrations, and provide potential ways to improve communication with them.MethodsInformed by the principles of 'clean language', we conducted focus groups with self-identified CLD patients (N = 15). We asked participants about their experiences with CLD and CLD-related healthcare. We performed thematic analyses using a bottom-up approach based in discourse analysis. We also sought to identify specific types of verbalizations (repertoires) across themes.ResultsParticipants thematised a heterogeneous set of CLD-associated symptoms, which they frequently labelled as 'invisible' to others. Their illness significantly affected their daily lives, impacting their work, social activities, relationships with loved ones, hobbies and other means of participating in society. Negative experiences with healthcare providers were near-universal, also in patients with short-lived CLD-associated symptoms. Verbalizations were notable for frequent use of communicative modes that implicitly create common ground between participants and that give a certain validity to personal experiences (impersonal 'you' and other forms of presupposition).ConclusionCentral themes found in CLD patients' communication are 1. the experience of significant symptoms, 2. for which adequate relief is only rarely found from conventional medical practitioners, and 3. that are largely invisible to the outside world. Verbalizing these themes, patients use various repertoires for their shared experiences, such as a feeling of abandonment or not being heard by the medical system, feelings of loss with respect to their previous health, and the idea that they might have been better off had they been diagnosed sooner. Working with these repertoires will enable healthcare providers to establish a shared perspective with their CLD patients, thus engaging in more fruitful doctor-patient communication. We hypothesize that these findings are not unique to CLD, but may also be applicable to other conditions with an uncertain aetiology, such as Long COVID.

Project description:BACKGROUND:Despite the growth of and media hype about mobile health (mHealth), there is a paucity of literature supporting the effectiveness of widespread implementation of mHealth technologies. OBJECTIVE:This study aimed to assess whether an innovative mHealth technology system with several overlapping purposes can impact (1) clinical outcomes (ie, readmission rates, revisit rates, and length of stay) and (2) patient-centered care outcomes (ie, patient engagement, patient experience, and patient satisfaction). METHODS:We compared all patients (2059 patients) of participating orthopedic surgeons using mHealth technology with all patients of nonparticipating orthopedic surgeons (2554 patients). The analyses included Wilcoxon rank-sum tests, Kruskal-Wallis tests for continuous variables, and chi-square tests for categorical variables. Logistic regression models were performed on categorical outcomes and a gamma-distributed model for continuous variables. All models were adjusted for patient demographics and comorbidities. RESULTS:The inpatient readmission rates for the nonparticipating group when compared with the participating group were higher and demonstrated higher odds ratios (ORs) for 30-day inpatient readmissions (nonparticipating group 106/2636, 4.02% and participating group 54/2048, 2.64%; OR 1.48, 95% CI 1.03 to 2.13; P=.04), 60-day inpatient readmissions (nonparticipating group 194/2636, 7.36% and participating group 85/2048, 4.15%; OR 1.79, 95% CI 1.32 to 2.39; P<.001), and 90-day inpatient readmissions (nonparticipating group 261/2636, 9.90% and participating group 115/2048, 5.62%; OR 1.81, 95% CI 1.40 to 2.34; P<.001). The length of stay for the nonparticipating cohort was longer at 1.90 days, whereas the length of stay for the participating cohort was 1.50 days (mean 1.87, SD 2 vs mean 1.50, SD 1.37; P<.001). Patients treated by participating surgeons received and read text messages using mHealth 83% of the time and read emails 84% of the time. Patients responded to 60% of the text messages and 53% of the email surveys. Patients were least responsive to digital monitoring questions when the hospital asked them to do something, and they were most engaged with emails that did not require action, including informational content. A total of 96% (558/580) of patients indicated high satisfaction with using mHealth technology to support their care. Only 0.40% (75/2059) patients opted-out of the mHealth technology program after enrollment. CONCLUSIONS:A novel, multicomponent, pathway-driven, patient-facing mHealth technology can positively impact patient outcomes and patient-reported experiences. These technologies can empower patients to play a more active and meaningful role in improving their outcomes. There is a deep need, however, for a better understanding of the interactions between patients, technology, and health care providers. Future research is needed to (1) help identify, address, and improve technology usability and effectiveness; (2) understand patient and provider attributes that support adoption, uptake, and sustainability; and (3) understand the factors that contribute to barriers of technology adoption and how best to overcome them.

Dataset Information

Lyme Disease Patient Outcomes and Experiences; A Retrospective Cohort Study.

Publications

Lyme Disease Patient Outcomes and Experiences; A Retrospective Cohort Study.

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