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PeerJ — Severity of chronic Lyme disease symptoms compared to other chronic conditions

PeerJ — Severity of chronic Lyme disease compared to other chronic conditions: a quality of life survey.

Johnson L, Wilcox S, Mankoff J, Stricker RB. — PeerJ. 2014; 2:e322.
PubMed [journal] — PMID: 24749006 PMCID: PMC3976119

Overview. The Centers for Disease Control and Prevention (CDC) health-related quality of life (HRQoL) indicators are widely used in the general population to determine the burden of disease, identify health needs, and direct public health policy. These indicators also allow the burden of illness to be compared across different diseases. Although Lyme disease has recently been acknowledged as a major health threat in the USA with more than 300,000 new cases per year, no comprehensive assessment of the health burden of this tickborne disease is available. This study assesses the HRQoL of patients with chronic Lyme disease (CLD) and compares the severity of CLD to other chronic conditions.

Methods. Of 5,357 subjects who responded to an online survey, 3,090 were selected for the study. Respondents were characterized as having CLD if they were clinically diagnosed with Lyme disease and had persisting symptoms lasting more than 6 months following antibiotic treatment. HRQoL of CLD patients was assessed using the CDC 9-item metric. The HRQoL analysis for CLD was compared to published analyses for the general population and other chronic illnesses using standard statistical methods.

Results. Compared to the general population and patients with other chronic diseases reviewed here, patients with CLD reported significantly lower health quality status, more bad mental and physical health days, a significant symptom disease burden, and greater activity limitations. They also reported impairment in their ability to work, increased utilization of healthcare services, and greater out of pocket medical costs.

Conclusions. CLD patients have significantly impaired HRQoL and greater healthcare utilization compared to the general population and patients with other chronic diseases. The heavy burden of illness associated with CLD highlights the need for earlier diagnosis and innovative treatment approaches that may reduce the burden of illness and concomitant costs posed by this illness.

Introduction

Patient Selection and Characteristics

Study Methods

Statistical Analysis

Results

CDC HRQoL health module

Overall health status

Symptom severity

Healthy days and activity limitations

Increased utilization of services

Productivity losses

Discussion

Strengths and Limitations

Conclusions

Supplemental Information

Additional Information and Declarations

Competing Interests

Lorraine Johnson and Spencer Wilcox are affiliated with LymeDisease.org. Raphael B. Stricker is affiliated with LymeDisease.org and the International Lyme & Associated Diseases Society. The other authors have no competing interests to declare.

Author Contributions

Lorraine Johnson and Spencer Wilcox conceived and designed the experiments, performed the experiments, analyzed the data, contributed reagents/materials/analysis tools, wrote the paper, prepared figures and/or tables, reviewed drafts of the paper.

Jennifer Mankoff conceived and designed the experiments, analyzed the data, wrote the paper, prepared figures and/or tables, reviewed drafts of the paper.

Raphael B. Stricker conceived and designed the experiments, analyzed the data, wrote the paper, prepared figures and/or tables, reviewed drafts of the paper, submitted manuscript online.

Human Ethics

The following information was supplied relating to ethical approvals (i.e., approving body and any reference numbers):

Analysis of the survey data was exempted from review by the Carnegie Mellon University Institutional Review Board (IRB) because none of the data contained identifiable personal information.

Funding

There was no funding for this work.

  1.  Medical expenditure panel survey. Available at http://meps.ahrq.gov/mepsweb/ (accessed 19 March 2014)
  2. Agency for Healthcare Research and Quality. Medical expenditure panel survey. Table 3. Percent of persons with home health care expenses during the year and mean expenses per month by type of provider and age. Available at http://meps.ahrq.gov/data_stats/quick_tables_results.jsp?component=1&subcomponent=0&year=2010&tableSeries=9&searchText=&searchMethod=1&Action=Search
  3. Anderson G. Chronic care: making the case for ongoing care. Available at http://www.rwjf.org/en/research-publications/find-rwjf-research/2010/01/chronic-care.html
  4. Aslan UB, Cavlak U, Yagci G, Baskan E. . Pakistan Journal of Medical Sciences 26:875-879
  5. Aucott J, Morrison C, Munoz B, Rowe PC, Schwarzwalder A, West SK. ..BMC Infectious Diseases 9:79
  6. Aucott JN, Rebman AW, Crowder LA, Kortte KB.  Quality of Life Research 22:75-84
  7. Bayliss M, Rendas-Baum R, White MK, Maruish M, Bjorner J, Tunis SL. ..Health and Quality of Life Outcomes 10:154
  8. Becker H, Stuifbergen A. . International Journal of MS Care11:57-65
  9. Bhinder S, Chowdhury N, Granton J, Krahn M, Tullis DE, Waddell TK, Singer LG.. Journal of Medical Internet Research 12:e35
  10. Boscardin CK, Gonzales R. . The Joint Commission Journal on Quality and Patient Safety 39:123-128
  11. Burns RB, McCarthy EP, Moskowitz MA, Ash A, Kane RL, Finch M. .. Journal of the American Geriatrics Society 45:276-280
  12. Cairns V, Godwin J. . International Journal of Epidemiology 34:1340-1345
  13. Centers for Disease Control and Prevention. . MMWR, Mobid Mortal Wkly Rep 57:1-12 Available at http://www.cdc.gov/mmwr/preview/mmwrhtml/mm5317a4.htm
  14. Centers for Disease Control and Prevention. Behavioral risk factor surveillance survey data. Available at http://www.cdc.gov/brfss/annual_data/annual_2009.htm(accessed 19 March 2014)
  15. Centers for Disease Control and Prevention. National ambulatory medical care survey: 2010 summary tables. Available at http://www.cdc.gov/nchs/data/ahcd/namcs_summary/2010_namcs_web_tables.pdf (accessed 19 March 2014)
  16. Centers for Disease Control and Prevention. National ambulatory medical care survey: 2010 outpatient department summary tables. Available at http://www.cdc.gov/nchs/data/ahcd/nhamcs_outpatient/2010_opd_web_tables.pdf (accessed 19 March 2014)
  17. Centers for Disease Control and Prevention. National ambulatory medical care survey: 2010 emergency department summary tables. Available at http://www.cdc.gov/nchs/data/ahcd/nhamcs_emergency/2010_ed_web_tables.pdf (accessed 19 March 2014)
  18. Centers for Disease Control and Prevention. Behavioral risk factor surveillance survey data. Available at http://www.cdc.gov/brfss/annual_data/annual_2010.htm(accessed 19 March 2014)
  19. Centers for Disease Control and Prevention. Breast cancer statistics. Available at http://www.cdc.gov/cancer/breast/statistics/ (accessed 19 March 2014)
  20. Centers for Disease Control and Prevention. CDC provides estimate of Americans diagnosed with Lyme disease each year. Available at http://www.cdc.gov/media/releases/2013/p0819-lyme-disease.html (accessed 19 March 2014)
  21. Centers for Disease Control and Prevention. HIV/AIDS statistics overview. Available at http://www.cdc.gov/hiv/statistics/basics/ (accessed 19 March 2014)
  22. Chandra AM, Keilp JG, Fallon BA. . Psychosomatics 54:552-559
  23. DeSalvo KB, Fan VS, McDonell MB, Fihn SD. . Health Services Research 40:1234-1246
  24. Devol R, Bedroussian A. An unhealthy America: the economic burden of chronic disease – charting a new course to save lives and increase productivity and economic growthy. Available at www.milkeninstitute.org/publications/publications.taf?function=detail&ID=38801018&cat=resrep
  25. Donkin L, Hickie IB, Christensen H, Naismith SL, Neal B, Cockayne NL, Glozier N.. Translational Psychiatry 2:e174
  26. Fallon BA, Keilp JG, Corbera KM, Petkova E, Britton CB, Dwyer E, Slavov I, ChengJ, Dobkin J, Nelson DR+1 more. . Neurology 70:992-1003
  27. Fiorillo J, Lansky D, Bethell C. A portrait of the chronically ill in America, 2001. Available at http://www.policyarchive.org/collections/markle/index?section=5&id=21791
  28. Hoge CW, Terhakopian A, Castro CA, Messer SC, Engel CC. . American Journal of Psychiatry 164:150-153
  29. Institute of Medicine. Living well with chronic illness: a call for public health action. Washington, DC: National Academies Press. Available at http://books.nap.edu/openbook.php?record_id=13272&page=R3
  30. Johnson L, Aylward A, Stricker RB. . Health Policy 102:64-71
  31. Klempner MS, Hu LT, Evans J, Schmid CH, Johnson GM, Trevino RP, Norton D, Levy L, Wall D, McCall J+2 more. . New England Journal of Medicine 345:85-92
  32. Lackner JM, Gudleski GD, Zack MM, Katz LA, Powell C, Krasner S, Holmes E, Dorscheimer K.  Psychosomatic Medicine 312-320
  33. Liu H, Cella D, Gershon R, Shen J, Morales LS, Riley W, Hays RD. .. Journal of Clinical Epidemiology 63:1169-1178
  34. Logigian EL, Kaplan RF, Steere AC. . New England Journal of Medicine 323:1438-1444
  35. National Center for Health Statistics. Summary health statistics for the U.S. population: national health interview survey, 2011. Table 6. Series 10. Available at http://www.cdc.gov/nchs/data/series/sr_10/sr10_255.pdf
  36. National Center for Health Statistics. Summary health statistics for the U.S. population: national health interview survey, 2011; Appendix III, table XV. Series 10. Available at http://www.cdc.gov/nchs/data/series/sr_10/sr10_255.pdf
  37. New York State Department of Health Disability and Health Program. .Chartbook on disability in New York: results from the behavioral risk factors surveillance system. Available at http://www.health.ny.gov/statistics/disabilities/chart/docs/2007_disability_chartbook.pdf
  38. Rangnekar AS, Ellerbe C, Durkalski V, McGuire B, Lee WM, Fontana RJ. .. Liver Transplantation 19:991-1000
  39. Schutzer SE, Berger BW, Krueger JG, Eshoo MW, Ecker DJ, Aucott JN. .Emerging Infectious Diseases 19:815-817
  40. Shadick NA, Phillips CB, Logigian EL, Steere AC, Kaplan RF, Berardi VP, DurayPH, Larson MG, Wright EA, Ginsburg KS+2 more. . Annals of Internal Medicine 121:560-567
  41. Smith RP, Schoen RT, Rahn DW, Sikand VK, Nowakowski J, Parenti DL, HolmanMS, Persing DH, Steere AC. .Annals of Internal Medicine 136:421-428
  42. Stanton MW. The high concentration of U.S. health care expenditures. Research in Action. Available at http://www.ahrq.gov/research/findings/factsheets/costs/expriach/index.html#
  43. Steere AC. . New England Journal of Medicine 321:586-596
  44. Stricker RB, Johnson L. . Journal of Women’s Health 10:1717-1718
  45. Toossi MT. .Bureau of Labor Statistics Monthly Labor Review 2014:42-64 Available at http://www.bls.gov/opub/mlr/2012/01/art3full.pdf (accessed 19 March 2014)
  46. US Department of Health and Human Services. HealthyPeople.gov: general health status. Available at http://healthypeople.gov/2020/about/GenHealthAbout.aspx
  47. van Gelder MM, Bretveld RW, Roeleveld N.  American Journal of Epidemiology 172:1292-1298
  48. Wolfe F, Anderson J, Harkness D, Bennett RM, Caro XJ, Goldenberg DL, RussellIJ, Yunus MB. . Journal of Rheumatology 24:1171-1178
  49. Yazdany J, Trupin L, Gansky SA, Dall’era M, Yelin EH, Criswell LA, Katz PP. .. Arthritis Care & Research (Hoboken) 63:1170-1177

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