Long-term Assessment of Health-Related Quality of Life in Patients With Culture-Confirmed Early Lyme Disease

Wormser, Gary P.; Weitzner, Erica; McKenna, Donna; Nadelman, Robert B.; Scavarda, Carol; Molla, Irida; Dornbush, Rhea L.; Visintainer, Paul; Nowakowski, John

doi:10.1093/cid/civ277

Cited by 45 publications

(19 citation statements)

References 19 publications

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“…We chose a retrospective design in the current study in order to capture this heterogeneity, and to capitalize on a more representative and generalizable view of PTLDS in the community setting. Participants included in prospective studies are often ideally and uniformly treated, and limited to specific clinical presentations by design ( 46 , 47 ). We hypothesize that such factors may contribute to discrepant findings in symptom severity between prospective studies, which tend to report milder residual symptoms following treatment ( 46 , 47 ), and community-based retrospective studies such as ours and others ( 16 , 17 ) that describe a higher symptom burden with more significant impacts on quality of life ( 48 ).…”

Section: Discussionmentioning

confidence: 99%

The Clinical, Symptom, and Quality-of-Life Characterization of a Well-Defined Group of Patients with Posttreatment Lyme Disease Syndrome

et al. 2017

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BackgroundThe increased incidence and geographic expansion of Lyme disease has made it the most common vector-borne infection in North America. Posttreatment Lyme disease syndrome (PTLDS) represents a subset of patients who remain ill following standard antibiotic therapy for Lyme disease. The spectrum of symptoms and their impact on quality of life remain largely unexplored among patients with well-documented PTLDS.ObjectiveTo characterize a case series of patients with well-documented PTLDS compared to a sample of healthy controls.MethodsSixty-one participants met the proposed case definition for PTLDS. Twenty-six healthy controls had neither a clinical history of Lyme disease nor current antibodies to Borrelia burgdorferi. Participants with PTLDS and controls were evaluated by physical exam, clinical laboratory testing, standardized questionnaires, and a 36-item current symptom list.ResultsCompared to controls, participants with PTLDS reported significantly greater fatigue, pain, sleep disturbance, and depression (Fatigue Severity Scale: 50.0 ± 10.6 vs. 19.8 ± 8.6; Short-Form McGill Pain Questionnaire: 13.7 ± 8.3 vs. 0.8 ± 1.9; Pittsburgh Sleep Quality Index: 10.1 ± 4.7 vs. 4.1 ± 2.1; Beck Depression Inventory-II: 15.1 ± 7.7 vs. 2.2 ± 3.2; p < 0.001 for each), and significantly lower quality of life (SF-36 Physical Component Score: 33.9 ± 9.7 vs. 55.1 ± 6.2; Mental Component Score: 42.9 ± 10.1 vs. 54.2 ± 5.4; p < 0.001 for each). Nineteen non-PTLDS-defining symptoms were found to be significantly more severe among participants with PTLDS than controls, including sleep difficultly and visual complaints. Initial delayed or misdiagnosis was characterized in 59.0% of participants with PTLDS, and 32.2% had abnormal vibratory sense.ConclusionAlthough physical exam and clinical laboratory tests showed few objective abnormalities, standardized symptom questionnaires revealed that patients with PTLDS are highly and clinically significantly symptomatic, with poor health-related quality of life. PTLDS patients exhibited levels of fatigue, musculoskeletal pain, sleep disturbance, and depression which were both clinically relevant and statistically significantly higher than controls. Our study shows that PTLDS can be successfully identified using a systematic approach to diagnosis and symptom measurement. As the prevalence of PTLDS continues to rise, there will be an increased need for physician education to more effectively identify and manage PTLDS as part of integrated patient care.

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Section: Discussionmentioning

confidence: 99%

The Clinical, Symptom, and Quality-of-Life Characterization of a Well-Defined Group of Patients with Posttreatment Lyme Disease Syndrome

et al. 2017

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“…One study concluded their mean summary assessment scores of the mental health of LB patients 11–20 years post infection was similar to those of the general population [ 179 ]. However, there were multiple flaws in the study that included a failure to perform psychiatric assessments, inclusion of only 35% of the initial study group which suggests a selection bias, the use of assessment scales insufficient to adequately evaluate the cognitive and psychiatric impairments seen in LB, a failure to differentiate between statistical and clinical significance, a research design that was not designed (or powered) a priori to detect differences in functional outcomes, data that did not support the conclusion and the inclusion of only subjects who were effectively diagnosed and treated early [ 180 ]. This group of patients are quite different that other studies with greater psychiatric morbidity in which 8 years [ 48 ] or 9 years [ 12 ] elapsed in the average patient before effective diagnosis and treatment.…”

Section: Discussionmentioning

confidence: 99%

Neuropsychiatric Lyme Borreliosis: An Overview with a Focus on a Specialty Psychiatrist’s Clinical Practice

Bransfield

2018

Healthcare

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There is increasing evidence and recognition that Lyme borreliosis (LB) causes mental symptoms. This article draws from databases, search engines and clinical experience to review current information on LB. LB causes immune and metabolic effects that result in a gradually developing spectrum of neuropsychiatric symptoms, usually presenting with significant comorbidity which may include developmental disorders, autism spectrum disorders, schizoaffective disorders, bipolar disorder, depression, anxiety disorders (panic disorder, social anxiety disorder, generalized anxiety disorder, posttraumatic stress disorder, intrusive symptoms), eating disorders, decreased libido, sleep disorders, addiction, opioid addiction, cognitive impairments, dementia, seizure disorders, suicide, violence, anhedonia, depersonalization, dissociative episodes, derealization and other impairments. Screening assessment followed by a thorough history, comprehensive psychiatric clinical exam, review of systems, mental status exam, neurological exam and physical exam relevant to the patient’s complaints and findings with clinical judgment, pattern recognition and knowledgeable interpretation of laboratory findings facilitates diagnosis. Psychotropics and antibiotics may help improve functioning and prevent further disease progression. Awareness of the association between LB and neuropsychiatric impairments and studies of their prevalence in neuropsychiatric conditions can improve understanding of the causes of mental illness and violence and result in more effective prevention, diagnosis and treatment.

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“…Two studies were found in the electronic search that deserved further comment. They were two additional negative studies that were not referenced in the proposed guidelines; however, in both studies, the results did not match the conclusions [67,68].…”

Section: Resultsmentioning

confidence: 95%

“…One study assessed mental health scores of Lyme disease patients 11–20 years post infection and concluded that these scores were like those of the general population [67]. The study had multiple flaws.…”

Section: Resultsmentioning

confidence: 99%

Proposed Lyme Disease Guidelines and Psychiatric Illnesses

Bransfield

Cook²,

Bransfield³

2019

Healthcare

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The Infectious Disease Society of America, American Academy of Neurology, and American Academy of Rheumatology jointly proposed Lyme disease guidelines. Four areas most relevant to psychiatry were reviewed—the disclaimer, laboratory testing, and adult and pediatric psychiatric sections. The disclaimer and the manner in which these guidelines are implemented are insufficient to remove the authors and sponsoring organizations from liability for harm caused by these guidelines. The guidelines and supporting citations place improper credibility upon surveillance case definition rather than clinical diagnosis criteria. The guidelines fail to address the clear causal association between Lyme disease and psychiatric illnesses, suicide, violence, developmental disabilities and substance abuse despite significant supporting evidence. If these guidelines are published without very major revisions, and if the sponsoring medical societies attempt to enforce these guidelines as a standard of care, it will directly contribute to increasing a national and global epidemic of psychiatric illnesses, suicide, violence, substance abuse and developmental disabilities and the associated economic and non-economic societal burdens. The guideline flaws could be improved with a more appropriate disclaimer, an evidence-based rather than an evidence-biased approach, more accurate diagnostic criteria, and recognition of the direct and serious causal association between Lyme disease and psychiatric illnesses.

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Long-term Assessment of Health-Related Quality of Life in Patients With Culture-Confirmed Early Lyme Disease

Cited by 45 publications

References 19 publications

The Clinical, Symptom, and Quality-of-Life Characterization of a Well-Defined Group of Patients with Posttreatment Lyme Disease Syndrome

The Clinical, Symptom, and Quality-of-Life Characterization of a Well-Defined Group of Patients with Posttreatment Lyme Disease Syndrome

Neuropsychiatric Lyme Borreliosis: An Overview with a Focus on a Specialty Psychiatrist’s Clinical Practice

Proposed Lyme Disease Guidelines and Psychiatric Illnesses

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