ArticleBMC family practice2014
Experiences of patients identifying with chronic Lyme disease in the healthcare system: a qualitative study.
Article in BMC family practice, 2014. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 31 papers, 1 of them a synthesis that pooled it.
What it found
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Who cites it
31 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Clinical and economic outcomes evaluated in Lyme disease: a systematic review.Parasites & vectors · 2020Pooled it
- Promoting a Positive Relationship Between Physicians and Patients with Lyme Disease During Pregnancy and Parenthood.Pathogens (Basel, Switzerland) · 2026Article
- Observational
- 'You adapt, and you try not to resent it': a qualitative study exploring impacts of living with ticks and barriers to adopting preventive measures in Canada.BMC public health · 2025Article
- Invalidation by medical professionals in post-treatment Lyme disease.Scientific reports · 2024Article
- Evaluation and 1-year follow-up of patients presenting at a Lyme borreliosis expertise centre: a prospective cohort study with validated questionnaires.European journal of clinical microbiology & infectious diseases : official publication of the European Society of Clinical Microbiology · 2024Article
- Lyme borreliosis and medical wandering: what do patients think about multidisciplinary management? A qualitative study in the context of scientific and social controversy.BMC infectious diseases · 2024Article
- Article
- Cost of illness in patients with post-treatment Lyme disease syndrome in Belgium.European journal of public health · 2023Article
- A Comprehensive Review of Herbal Supplements Used for Persistent Symptoms Attributed to Lyme Disease.Integrative medicine (Encinitas, Calif.) · 2023Review
- Healthcare costs and outcomes associated with laboratory-confirmed Lyme disease in Ontario, Canada: A population-based cohort study.PloS one · 2023Article
- Profiling disease burden and Borrelia seroprevalence in Canadians with complex and chronic illness.PloS one · 2023Article
- Knowing the entire story - a focus group study on patient experiences with chronic Lyme-associated symptoms (chronic Lyme disease).BMC primary care · 2022Article
- Multidisciplinary Management of Suspected Lyme Borreliosis: Clinical Features of 569 Patients, and Factors Associated with Recovery at 3 and 12 Months, a Prospective Cohort Study.Microorganisms · 2022Article
- Design theory to better target public health priorities: An application to Lyme disease in France.Frontiers in public health · 2022Article
- Perceptions, Representations, and Experiences of Patients Presenting Nonspecific Symptoms in the Context of Suspected Lyme Borreliosis.Microorganisms · 2021Article
- Post-treatment Lyme borreliosis in context: Advancing the science and patient care.The Lancet regional health. Europe · 2021Article
- Experience and knowledge of Lyme disease: A scoping review of patient-provider communication.Ticks and tick-borne diseases · 2021Article
- A comprehensive clinical and laboratory evaluation of 224 patients with persistent symptoms attributed to presumed tick-bite exposure.PloS one · 2021Article
- Lessons Learned from a Rhode Island Academic Out-Patient Lyme and Tick-Borne Disease Clinic.Rhode Island medical journal (2013) · 2020Article
Corrections and comments
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Authors and funding
5 authors.
Funding
Abstract
backgroundChronic Lyme disease is a term that describes a constellation of persistent symptoms in patients with or without evidence of previous Borrelia burgdorferi infection. Patients labeled as having chronic Lyme disease have a substantial clinical burden. Little is known about chronic Lyme disease patient experiences in the healthcare system and their relationships with healthcare providers. The purpose of this study was to gather insights about the experiences of patients who carry a diagnosis of chronic Lyme disease in the United States healthcare system.
methodsQualitative, phenomenological study in 12 adult participants who identified themselves as having chronic Lyme disease. Semi-structured face-to-face in-depth interviews were conducted, 60-90 minutes in length, focusing on perceptions of disease burden and of their healthcare providers, using the dimensions of the Health Belief Model. Transcribed interviews were analyzed for emergent topics and themes in the categories of beliefs/understanding, personal history/narrative, consequences/limitations, management, and influences on care.
resultsEnrollment continued until theoretical saturation was obtained. Four major themes emerged from participants' descriptions of their experiences and perceptions: 1) changes in health status and the social impact of chronic Lyme disease, 2) doubts about recovery and the future, 3) contrasting doctor-patient relationships, 4) and the use of unconventional therapies to treat chronic Lyme disease.
conclusionsParticipants reported a significant decline in health status associated with chronic Lyme disease and were often unsatisfied with care in conventional settings. Negative experiences were associated with reports of dismissive, patronizing, and condescending attitudes. Positive experiences were associated with providers who were reported to be attentive, optimistic, and supportive. Consultations with CAM practitioners and use of CAM therapies were common. Actively engaged and sympathetic clinical encounters may foster greater satisfaction in healthcare settings.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.