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Mov Disord Clin Pract. Author manuscript; available in PMC 2017 May 01. Published in final edited form as: Mov Disord Clin Pract. 2016 ; 3(3): 250–256. doi:10.1002/mdc3.12272.
Associations and implications of low health literacy in Parkinson’s Disease Jori E. Fleisher, MD, MSCE1,*, Krunal Shah, BA2,^, Whitney Fitts, BA2,°, and Nabila A. Dahodwala, MD, MS2 1Department
of Neurology, New York University Langone School of Medicine, New York, New
York, USA
Author Manuscript
2Department
of Neurology, University of Pennsylvania Perelman School of Medicine, Philadelphia, Pennsylvania, USA
Abstract BACKGROUND—Low health literacy (HL) indicates a limited ability to understand and use basic information to make appropriate healthcare decisions. While low HL is associated with higher morbidity, mortality, and healthcare costs in multiple chronic conditions, little is known about HL and its associations in Parkinson’s disease (PD).
Author Manuscript
METHODS—Cross-sectional study of non-demented adults with PD participating in the National Parkinson Foundation Parkinson’s Outcomes Project at the University of Pennsylvania. Subjects were administered two brief HL assessments—the Rapid Estimate of Adult Literacy in Medicine-Short Form (REALM-SF), a word-recognition test, and the Newest Vital Sign (NVS), a test of literacy, numeracy and understanding of health information—as well as demographic and clinical questionnaires. Adverse outcomes included falls in the 3 months preceding the study visit, and hospital admissions, emergency room visits, infections, or injuries in the preceding year. Caregiver burden was measured using the Multidimensional Caregiver Strain Index. RESULTS—168 subjects completed both HL screens (mean 65.8 years, 65.5% male, 65.2% Hoehn & Yahr Stage 2). Using the REALM-SF, 97.6% of subjects had adequate HL. Using the NVS, however, 29.8% had low HL, which was associated with older age, lower education, male Corresponding author: Jori E. Fleisher, MD MSCE, 240 E. 38th Street, 20th Floor, New York, New York 10016, (646) 510-9259, [email protected]. ^Current address: School of Dental Medicine, University of Buffalo, Buffalo, NY, USA °Current address: Harvard Medical School, Boston, MA, USA
*
Author Manuscript
Conflicts of interest: The authors have no conflicts of interest to report. AUTHOR ROLES (1) Research Project: A. Conception, B. Organization, C. Execution (2) Statistical Analysis: A. Design, B. Execution, C. Review and Critique (3) Manuscript: A. Writing of the First Draft, B. Review and Critique J.F.: 1A, 1B, 1C; 2A, 2B, 2C; 3A, 3B K.S.: 1C; 3B W.F.: 1C; 3B N.D.: 1A, 1B; 2A, 2C; 3B Financial disclosures for previous 12 months: Dr. Fleisher received research support from NIH and Parkinson Council. Dr. Dahodwala received research support from NIH, Parkinson Council, National Parkinson Foundation and Teva. Mr. Shah and Ms. Fitts have no disclosures.
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gender, greater disease severity, and poorer cognition. Low HL was associated with hospital admission and increased caregiver burden. CONCLUSIONS—Low HL is common and associated with greater caregiver burden and a higher likelihood of hospitalization in patients with PD. Since HL is associated with both disease severity and adverse outcomes, it may be an important, modifiable contributor to morbidity. Keywords Parkinson’s disease; health literacy; patient education; caregiver; communication
INTRODUCTION Author Manuscript
In 2013, the American Association of Medical Colleges issued a list of competencies integral to physician development1. Included is the capacity to “communicate effectively with patients.” To do so, physicians must recognize low health literacy (HL) as a potential obstacle to clear communication. HL has been defined as the ability to obtain and understand health information in order to make informed decisions regarding health care2, and is a prerequisite comprehension of any health condition. Estimates of low HL prevalence range from 35–80% in elderly and disease-specific cohorts3–6. Low HL is associated with poorer self-management and higher hospitalization rates, healthcare costs, and mortality among older adults7–11. HL is often erroneously interpreted as a surrogate marker of education, however many individuals have low HL despite advanced degrees12,13.
Author Manuscript
Little is known about the prevalence and implications of low HL in Parkinson’s disease (PD). In the first study to our knowledge employing a validated HL screening instrument in a non-demented, general neurology population, nearly 21% had low HL14. This is despite neurologists’ tendency to manage patients with complicated, chronic conditions, requiring extensive communication between providers, patients, and families. In the case of PD, affecting over 1 million adults in the US and often involving multiple pharmacologic and non-pharmacologic interventions15, adequate HL is critical. Adherence relies in part on adequate HL, and increasing regimen complexity is associated with both a higher degree of HL required for comprehension and a higher risk of medication non-adherence13. We therefore sought to establish the validity of two brief HL screens—the Rapid Estimate of Adult Literacy in Medicine-Short Form (REALM-SF)16 and the Newest Vital Sign (NVS)17,18—in a non-demented PD population. We aimed to identify patient factors associated with low HL in this population, explore the relationship between low HL and caregiver burden, and examine the potential role of low HL in the causal pathway between PD and adverse outcomes.
Author Manuscript
METHODS Sample The Institutional Review Board of the University of Pennsylvania approved this study. Subjects included all individuals participating in the National Parkinson Foundation Parkinson’s Outcomes Project (NPF POP) at the University of Pennsylvania’s Parkinson’s Disease and Movement Disorders Center, an NPF Center of Excellence. The study design, Mov Disord Clin Pract. Author manuscript; available in PMC 2017 May 01.
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inclusion and exclusion criteria, and methods of the POP are detailed elsewhere19. In short, the POP is a worldwide, multicenter, longitudinal study of care practices in the management of individuals with PD. Participants complete an annual evaluation including demographic and clinical information, a review of medical comorbidities and adverse events including falls, injuries, infections, emergency room visits, and hospital admissions occurring over the past year, and a battery of mobility and cognitive tests validated for use in PD. Medications reviewed include dopaminergic agents, antidepressants, and acetylcholinesterase inhibitors. Quality of life is assessed using the Parkinson’s Disease Questionnaire (PDQ-39), covering 8 dimensions of quality of life (QOL). Each dimension is scored from 0–100 with lower scores indicating better QOL, and an overall summary index score (PDSI) is calculated as the average of the 8 subscores, ranging from 0–10020,21. The emotional wellbeing subscore is used as a surrogate measure of depression in this analysis. In addition, care partners are asked to complete the Multidimensional Caregiver Strain Index (MCSI)22,23. The MCSI contains 18 items for a range of 0–72, where higher scores indicate greater strain. For the purposes of this study, individuals with a Montreal Cognitive Assessment (MoCA) score
Mov Disord Clin Pract. Author manuscript; available in PMC 2017 May 01. Published in final edited form as: Mov Disord Clin Pract. 2016 ; 3(3): 250–256. doi:10.1002/mdc3.12272.
Associations and implications of low health literacy in Parkinson’s Disease Jori E. Fleisher, MD, MSCE1,*, Krunal Shah, BA2,^, Whitney Fitts, BA2,°, and Nabila A. Dahodwala, MD, MS2 1Department
of Neurology, New York University Langone School of Medicine, New York, New
York, USA
Author Manuscript
2Department
of Neurology, University of Pennsylvania Perelman School of Medicine, Philadelphia, Pennsylvania, USA
Abstract BACKGROUND—Low health literacy (HL) indicates a limited ability to understand and use basic information to make appropriate healthcare decisions. While low HL is associated with higher morbidity, mortality, and healthcare costs in multiple chronic conditions, little is known about HL and its associations in Parkinson’s disease (PD).
Author Manuscript
METHODS—Cross-sectional study of non-demented adults with PD participating in the National Parkinson Foundation Parkinson’s Outcomes Project at the University of Pennsylvania. Subjects were administered two brief HL assessments—the Rapid Estimate of Adult Literacy in Medicine-Short Form (REALM-SF), a word-recognition test, and the Newest Vital Sign (NVS), a test of literacy, numeracy and understanding of health information—as well as demographic and clinical questionnaires. Adverse outcomes included falls in the 3 months preceding the study visit, and hospital admissions, emergency room visits, infections, or injuries in the preceding year. Caregiver burden was measured using the Multidimensional Caregiver Strain Index. RESULTS—168 subjects completed both HL screens (mean 65.8 years, 65.5% male, 65.2% Hoehn & Yahr Stage 2). Using the REALM-SF, 97.6% of subjects had adequate HL. Using the NVS, however, 29.8% had low HL, which was associated with older age, lower education, male Corresponding author: Jori E. Fleisher, MD MSCE, 240 E. 38th Street, 20th Floor, New York, New York 10016, (646) 510-9259, [email protected]. ^Current address: School of Dental Medicine, University of Buffalo, Buffalo, NY, USA °Current address: Harvard Medical School, Boston, MA, USA
*
Author Manuscript
Conflicts of interest: The authors have no conflicts of interest to report. AUTHOR ROLES (1) Research Project: A. Conception, B. Organization, C. Execution (2) Statistical Analysis: A. Design, B. Execution, C. Review and Critique (3) Manuscript: A. Writing of the First Draft, B. Review and Critique J.F.: 1A, 1B, 1C; 2A, 2B, 2C; 3A, 3B K.S.: 1C; 3B W.F.: 1C; 3B N.D.: 1A, 1B; 2A, 2C; 3B Financial disclosures for previous 12 months: Dr. Fleisher received research support from NIH and Parkinson Council. Dr. Dahodwala received research support from NIH, Parkinson Council, National Parkinson Foundation and Teva. Mr. Shah and Ms. Fitts have no disclosures.
Fleisher et al.
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gender, greater disease severity, and poorer cognition. Low HL was associated with hospital admission and increased caregiver burden. CONCLUSIONS—Low HL is common and associated with greater caregiver burden and a higher likelihood of hospitalization in patients with PD. Since HL is associated with both disease severity and adverse outcomes, it may be an important, modifiable contributor to morbidity. Keywords Parkinson’s disease; health literacy; patient education; caregiver; communication
INTRODUCTION Author Manuscript
In 2013, the American Association of Medical Colleges issued a list of competencies integral to physician development1. Included is the capacity to “communicate effectively with patients.” To do so, physicians must recognize low health literacy (HL) as a potential obstacle to clear communication. HL has been defined as the ability to obtain and understand health information in order to make informed decisions regarding health care2, and is a prerequisite comprehension of any health condition. Estimates of low HL prevalence range from 35–80% in elderly and disease-specific cohorts3–6. Low HL is associated with poorer self-management and higher hospitalization rates, healthcare costs, and mortality among older adults7–11. HL is often erroneously interpreted as a surrogate marker of education, however many individuals have low HL despite advanced degrees12,13.
Author Manuscript
Little is known about the prevalence and implications of low HL in Parkinson’s disease (PD). In the first study to our knowledge employing a validated HL screening instrument in a non-demented, general neurology population, nearly 21% had low HL14. This is despite neurologists’ tendency to manage patients with complicated, chronic conditions, requiring extensive communication between providers, patients, and families. In the case of PD, affecting over 1 million adults in the US and often involving multiple pharmacologic and non-pharmacologic interventions15, adequate HL is critical. Adherence relies in part on adequate HL, and increasing regimen complexity is associated with both a higher degree of HL required for comprehension and a higher risk of medication non-adherence13. We therefore sought to establish the validity of two brief HL screens—the Rapid Estimate of Adult Literacy in Medicine-Short Form (REALM-SF)16 and the Newest Vital Sign (NVS)17,18—in a non-demented PD population. We aimed to identify patient factors associated with low HL in this population, explore the relationship between low HL and caregiver burden, and examine the potential role of low HL in the causal pathway between PD and adverse outcomes.
Author Manuscript
METHODS Sample The Institutional Review Board of the University of Pennsylvania approved this study. Subjects included all individuals participating in the National Parkinson Foundation Parkinson’s Outcomes Project (NPF POP) at the University of Pennsylvania’s Parkinson’s Disease and Movement Disorders Center, an NPF Center of Excellence. The study design, Mov Disord Clin Pract. Author manuscript; available in PMC 2017 May 01.
Fleisher et al.
Page 3
Author Manuscript
inclusion and exclusion criteria, and methods of the POP are detailed elsewhere19. In short, the POP is a worldwide, multicenter, longitudinal study of care practices in the management of individuals with PD. Participants complete an annual evaluation including demographic and clinical information, a review of medical comorbidities and adverse events including falls, injuries, infections, emergency room visits, and hospital admissions occurring over the past year, and a battery of mobility and cognitive tests validated for use in PD. Medications reviewed include dopaminergic agents, antidepressants, and acetylcholinesterase inhibitors. Quality of life is assessed using the Parkinson’s Disease Questionnaire (PDQ-39), covering 8 dimensions of quality of life (QOL). Each dimension is scored from 0–100 with lower scores indicating better QOL, and an overall summary index score (PDSI) is calculated as the average of the 8 subscores, ranging from 0–10020,21. The emotional wellbeing subscore is used as a surrogate measure of depression in this analysis. In addition, care partners are asked to complete the Multidimensional Caregiver Strain Index (MCSI)22,23. The MCSI contains 18 items for a range of 0–72, where higher scores indicate greater strain. For the purposes of this study, individuals with a Montreal Cognitive Assessment (MoCA) score
