Postural Orthostatic Tachycardia Syndrome is Associated with Significant Employment and Economic Loss

Abstract

Background:

Postural orthostatic tachycardia syndrome (POTS) is a debilitating form of chronic orthostatic intolerance that primarily affects women and causes substantial impairment in quality of life and function. Yet, there is minimal literature describing the employment and economic consequences of POTS. We explored these aspects of the POTS patient experience through a self-reported study designed using community-based participatory research principles.

Methods and results:

A comprehensive questionnaire, including employment and economic consequences, was developed in partnership with Dysautonomia International, a patient advocacy organization. The POTS community engaged in all stages of the research design and analysis. Participants were recruited through Dysautonomia International’s website and social media channels. The analysis included 5,556 adult (age ≥ 18 years) participants with a physician-confirmed diagnosis of POTS. The majority of participants were female (95%). Forty-eight percent of participants reported employment during the three months prior to the survey, and of these participants, 66.8% would work greater hours if not for illness limitations. Over two-thirds (70.5%) of participants have lost income due to POTS symptoms, with 36.0% of the total cohort losing more than $10,000 USD in the 12 months prior to the survey. Almost all (95%) participants reported POTS-related out-of-pocket medical expenses since diagnosis, with 51.1% of participants spending $10,000 USD or more.

Conclusions:

This is the largest study reporting the employment and economic challenges experienced by individuals with POTS. Exposure of these challenges emphasizes the need for earlier diagnosis and improved therapeutic strategies to reduce the negative individual and societal consequences of this disorder.

Graphical Abstract

Introduction:

Postural orthostatic tachycardia syndrome (POTS) is a debilitating and chronic form of orthostatic intolerance. In fact, individuals with POTS can experience an impairment in quality of life and function comparable to individuals with heart failure and chronic obstructive pulmonary disease [1]. POTS is defined by an increase in heart rate of ≥30 beats/minute (bpm) (or ≥40 bpm for patients 12-19 years) within ten minutes of standing, in the absence of orthostatic hypotension (>20/10 mmHg drop in blood pressure within the first three minutes of standing), and accompanied by chronic symptoms of orthostatic intolerance [2]. Orthostatic symptoms include lightheadedness, tremulousness, mental clouding, and nausea, and are typically relieved with recumbence [3]. Migraine headache, sleep difficulties, cognitive impairment and significant fatigue may also be present, independent of orthostasis [3-5]. POTS primarily affects women of childbearing age, and while the true prevalence is unknown, it is estimated to affect 0.1 to 1% of the North American population [6]. POTS patients experience an extreme diagnostic delay of almost 5 years on average [7], indicating challenges with recognition and probable under-diagnosis.

Although POTS patients describe significant quality-of-life impairment and symptom burden [1], data on the financial burden and employment consequences of POTS are scarce. Using a cross-sectional, online survey developed in partnership with the POTS community, this study investigated the socioeconomic consequences of POTS on both patients and their caregivers, related to employment status and job loss, workplace modification, and the burden of financial loss. In addition, we described the association between socioeconomic outcomes, biological sex and educational status from a self-reported patient survey.

Methods:

Survey Design and Delivery:

A comprehensive questionnaire was developed through a partnership between Vanderbilt University Medical Center (Tennessee, USA) and Dysautonomia International (New York, USA), a POTS patient advocacy group. A community-based participatory research approach was used to inform the research design and develop the questionnaire [8]. Members of Dysautonomia International’s Patient Advisory Board were engaged to help develop and test the questionnaire in an iterative process. The questionnaire was designed to encompass a wide breadth of the experience relevant to patient stakeholders, including the length of diagnostic delay and treatments provided, effects on social functioning, and the RAND-36 health related quality-of-life survey [7, 9]. Specific questions about employment and finances in the three months preceding questionnaire completion were included as a line of inquiry. The questionnaire was written in English and delivered in an online format. Participants reported the time taken to complete the questionnaire (estimated between 45 minutes to 90 minutes), and they had the option to save and return to complete the questionnaire at a later time. Questionnaire information was stored in a secure Research Data Capture (REDCap) electronic database at Vanderbilt University. This study received ethical approval from both the Vanderbilt University Institutional Review Board (IRB#140303) and the University of Calgary Conjoint Health Research Ethics Board (CHREB; REB15-2922).

Study Participants:

The inclusion criteria were a self-reported physician diagnosis of POTS and ability to complete an English language questionnaire on an electronic device with an internet connection. POTS patients were recruited primarily through the Dysautonomia International advocacy organization website and social media channels, which reach a large audience of POTS patients. Participants provided electronic informed consent (or parent/guardian consent in addition to participant assent if the participants were under the age of 18 years) to complete the questionnaire. For the analysis of economic and employment data, the current study excluded participants less than 18 years of age.

Analysis:

All authors had access to the full data set, and the senior author assumes responsibility for the integrity of the data and the analysis. Questionnaire data was collected between July 2015 and January 2019. De-identified data were exported from REDCap and imported into Stata/IC v15.1 (College Station, TX: StataCorp) for analysis. Participants who did not provide consent, or those who did not report POTS diagnosed by a physician, were excluded from analysis. Additionally, participants who did not answer a question, or answered “prefer not to say,” were excluded from the total number of respondents to each question. The response rate was 92% or higher for every question asked of all participants. Total number of respondents for each question is detailed in Table 1. For the geographical analysis, only patients who reported their country location were included.

Table 1.

Summary of participant ‘yes’ responses to questions evaluating aspects of employment.

	%	N (Yes)	N (Overall respondents)
Employed in previous 3 months	48.0	2,649	5,518
-Would work more if not for health limitations	66.8	1,754	2,624
-Lost a job due to POTS	20.9	547	2,616
Unable to work for >1 week	74.0	4,033	5,448
Called in sick due to POTS	82.2	4,341	5,282
Lost income due to POTS	70.5	3,735	5,301
Spouse/Caregiver lost income due to POTS	28.5	1,551	5,442
Modified job due to POTS	72.4	3,715	5,129
-Workplace modifications	55.4	2,001	3,609
-Schedule reductions	74.1	2,692	3,633
-Other Modifications	67.2	2,392	3,559
Have applied for Government Benefits	34.2	1,867	5,456
-Successful Government Benefit Application	64.2	1,131	1,763
Have applied for Private Benefits	12.0	653	5,444
-Successful Private Benefit Application	73.9	459	621

POTS: Postural Orthostatic Tachycardia Syndrome

Statistical Analysis:

Questionnaire data including hours worked and income loss were collected as ordinal variables (e.g. 1-5 hours, 6-10 hours, etc.). The midpoint values of these ordinal variables were calculated for non-parametric testing. For example, the category of 1-5 hours was assigned a midpoint value of 3 hours. Statistical comparisons were also made between educational levels, biological sex at birth, race and ethnicity. Years of formal education were categorized in the questionnaire as follows: 11 years or less (no high school diploma), 12-15 years (high school diploma and some university work), 16-17 years (university degree), and 18+ years (graduate or professional schooling).

Since the study enrolled participants over several years, all financial data were inflated to 2018 US dollars based on the US Consumer Price Index for all urban consumers.[10] Continuous data are presented as medians and interquartile ranges (IQR). RAND36-Health Related Quality-of-Life data are presented as Mean±SD. Categorical data are presented as frequencies and percentages. Wilcoxon Rank-Sum tests were conducted to evaluate differences in continuous variables (e.g. hours worked per week, income lost) between employment status, income loss, educational level and biological sex groups. Pearson’s Chi-Square tests were conducted to compare differences in categorical variables for educational level, biological sex, race and ethnicity. A two-sided p-value of <0.05 was considered as statistically significant with adjustment for multiple comparisons through Bonferroni correction.

Results:

Participant Demographics:

A total of 9,785 participants consented to participate in this study, but 2,573 participants did not report a physician diagnosis of POTS and were excluded from analysis (Figure 1). POTS patients who were under the age of 18 years (n=758) or did not report whether they were 18 years of age and older (n=898), were also excluded from analysis. Therefore, a total of 5,556 adult participants with a physician-diagnosis of POTS were included in this analysis. The majority of participants were female (95%) and white (93%). The median years of education was 16 (IQR 14 to 17) years, equivalent to an undergraduate university degree. Median diagnostic delay (time from first presentation to diagnosis by a physician) was 1.82 years (IQR 0.4 to 6 years). Median time since POTS symptom onset was 8 years (IQR 3-16 years). Over two-thirds of participants (69.8%) disclosed their geographical location. For the 3,876 POTS patients who disclosed their geographic location, 31 countries were represented, with the majority of participants (84.9%) from the US (Table S1).

Figure 1.

Flow diagram depicting study participants who met criteria for inclusion in this specific analysis. Participants with no physician diagnosis of postural orthostatic tachycardia syndrome (POTS) or who were under 18 years of age were not included in this analysis.

Employment:

Approximately half of the study participants (48.0%) were employed. Just under 2% indicated their employment status as not applicable (n=97; 1.8%), and the remaining participants were unemployed (n=2772; 50.2%). Overall hours worked are shown in Table S2. Notably, amongst employed participants, a majority (66.8%) indicated that they would prefer increased work hours if not for their POTS symptoms. Employed participants missed a median of 2.5 (IQR 0 to 4.5) days of work per month due to POTS symptoms (Table S3). Amongst participants who were currently employed, 20.9% report losing a job because of POTS.

Of all participants, both employed and unemployed, almost three-quarters (74% ) have been unable to work for a period of greater than one week due to their POTS symptoms. The majority of POTS patients (82.2%) have also called in sick to work due to their POTS symptoms. About two-thirds of POTS patients have modified their job because of their POTS symptoms (72.4%). Employment and workplace information is summarized in Table 1.

Half (50.2%) of participants were not employed in the 3 months prior to the survey. The majority of currently unemployed participants (80%) reported they have had to call in sick due to POTS, and 67% reported having to modify a job due to POTS, during previous employment. Additionally, unemployed participants had lower RAND 36-Measure of Health Related Quality-of-Life scores in all domains except emotional well-being, when compared to employed participants (Figure 2).

Figure 2.

RAND 36-Measure of Related Quality of Life Domain scores in employed participants compared to unemployed participants (PF: Physical Functioning, RLPH: Role Limitations – Physical Health, RLEH: Role Limitations Emotional Health, EF: Energy and Fatigue; EWB: Emotional Well-Being, SF: Social Functioning, PAIN: Bodily Pain, GH: General Health). Scores are shown as Mean±SD. NS = a non-signifiant p-value of 0.09.

Economic Loss:

Over two-thirds of POTS patients (70.5%) report they have lost employment income due to their POTS symptoms, with 26.5% of the total cohort reporting a loss of $10,000 or less, and 36.0% reporting a loss of more than $10,000 USD in the year prior to the study (Figure 3a). The median income loss in the prior year was $18,329 (IQR $3,176 to $39,694) in 2018 USD. A detailed breakdown of income loss is available in Tables S4 and S5. The proportion of employed participants who lost income due to POTS decreased as hours worked per week increased (Table S6). As well, the proportion of employed participants who lost income due to POTS increased as the number of days of work missed due to POTS increased (Table S7). Participants with 18 or more years of education lost more income ($37,500 [IQR $7,685 to $65,809]) than participants with fewer years of education ($17,500 [IQR $3176 to $39,694]; p<0.001). Median income loss for each educational category is shown in Table S8. Additionally, 28.5% of POTS patients have had a spouse or caregiver lose income in the preceding 12 months because of caring for them due to their POTS symptoms, with 7.6% losing more than $10,000 USD (Figure 3b). Differences in income loss between the USA and other countries are summarized in Table 2.

Figure 3.

A. Income lost in US Dollars (USD) by patients in the 12 months prior to questionnaire completion. B. Income lost in USD by spouses and caregivers in the 12 months prior to the study.

Table 2.

Comparison of income loss and medical bills between USA participants and participants from other countries. Values were adjusted using inflation rates to reflect the years of questionnaire completion.

		Median	Range	p-value	n
Income Loss by patient in previous 12 months	USA	$18,524	$3,176-$39,694	<0.001	1,978
	Non-USA	$37,500	$7,939-$62,500		389
Income lost by spouse/caregiver in previous 12 months	USA	$3,186	$3,000-$15,000	0.003	822
	Non-USA	$7,685	$3,000-$25,616		149
Out of pocket medical expenses since symptom onset	USA	$30,000	$5,237-$31,755	<0.001	3,087
	Non-USA	$5,293	$5,000-$31,421		532
Out of pocket medical expenses in previous 12 months	USA	$5,237	$5,000-$5,293	<0.001	3,100
	Non-USA	$5,123	$5,000-$5,393		531

USA: United States of America. A p-value of less than 0.05 is considered significant.

Medical Bills:

Most participants (95%; Figure 4) reported POTS related out of pocket medical expenses since their diagnosis (median $30,000 USD, [IQR $5,123 to $31,755]). In the 12 months preceding the study, the median out of pocket medical expenses were $5,237 (IQR $5,000 to $5,293). Medical expenses are summarized in Tables S9 and S10.

Figure 4.

A. Out of pocket medical expenses in US Dollars (USD) since onset of POTS symptoms. B. Out of pocket medical expenses in US Dollars (USD) in the 12 months prior to questionnaire completion.

Disability Application and Success:

One-third of POTS patients (34.2%) have applied for government disability benefits or financial assistance as a result of their POTS symptoms, with a 64% success rate among applicants. Fewer POTS patients (12.0%) have applied for private benefits as a result of their POTS symptoms, with a 74% success rate among applicants. Government and private disability assistance application rates, and success rates, between the top four reporting countries are summarized in Table S11.

Sex at Birth:

Median years of formal education were not different between females (16 years IQR 14 to 17) and males (16 years, IQR 13 to 16; p=0.08). The proportions of POTS patients reporting employment were also similar when stratified by sex (48.1% females vs. 46.2% males, p=0.5). Median hours worked per week were 35.5 hours (IQR 15.5 to 35.5 hours) for females and 35.5 hours (IQR 25.5 to 45 hours) for males (p<0.001). Although both females and males lost income due to POTS at similar rates (70.6% vs. 68.5%, respectively, p=0.5), males reported more lost income than females in the past 12 months ($37,500 [IQR $17,500 to $64,040] vs. $18,329 [IQR $3,176 to $39,694], respectively; p<0.001). Sex differences in income loss and medical bills are shown in Table S12. Sex differences in disability applications and success are shown in Table S13.

Race and Ethnicity:

Non-white participants (n=333) were more likely to report inability to work for a period of more than one week due to POTS (80.1% non-white vs. 73.6% white, p=0.01) and were more likely to lose a job due to POTS (29.3% non-white vs. 20.4% white, p=0.007). Non-white participants were also more likely to lose income due to POTS (78.3% non-white vs. 69.8% white, p=0.001). Hispanic participants were more likely to have a caregiver lose income due to POTS than non-Hispanic participants (39.5% vs. 31.6%, respectively, p=0.02). This was not different between non-white and white participants (36.3% vs. 31.8%, p=0.12). Non-white participants also applied for government disability benefits more often than white participants (39.6% vs. 33.8%, respectively, p=0.03). Success rates among applicants were not significantly different between non-white and white participants (56.6% vs. 64.6%, respectively, p=0.07). A similar rate of Hispanic and non-Hispanic participants applied for government disability benefits (34.7% vs. 30.9%, respectively, p=0.3). However, Hispanic participants were less likely than non-Hispanic participants to have their benefits approved (51.4% vs. 63.9%, respectively, p=0.03).

Discussion:

The main finding of this study is that a large cohort of 5,556 POTS patients of working age self-reported significant employment consequences with less than half (48%) of the population employed, and 70.5% of patients reporting income loss due to their POTS symptoms. Notably, there is an excess of unemployment among working age POTS patients [11]. These striking results highlight the significant functional and financial consequences of POTS, and the need for increased recognition, diagnosis, and effective treatments for this disorder.

POTS is associated with significant functional disability and impaired quality of life [1, 12-14]. Few studies have assessed the economic and employment consequences of POTS. To our knowledge, this study is the largest evaluation of the economic and employment consequences of POTS, and with a wider geographical reach than previous, smaller-scale work [15]. Furthermore, this study actively sought patient engagement during all phases of the research design and analysis through the principles of community-based participatory research [8]. This approach to research addresses gaps in academic knowledge that are identified as priorities and most relevant to the patients, who are in fact most knowledgeable about the circumstances that affect their own health [8, 16].

Employment Consequences:

Young to middle-age adult females comprise the majority of the POTS patient population [7]. This age demographic also makes up the majority of the workforce in the overall population. Strikingly, only 48% of the study population was employed in the three months prior to the study. POTS-related challenges with employment as well as reduced RAND36- health related quality of life scores were demonstrated in the unemployed group, indicating the impacts of POTS on employment in this group. Employment is an important social determinant of health, and mortality and poor health are more common in individuals who are unemployed [17]. This is especially true in young people, where the inability to work represents a huge loss to individual wellness, as well as population productivity [18-20].

In addition, our results demonstrate an employment rate in POTS lower than the US average. The U.S. Department of Labor reports that in 2015 (the year of study launch), 65.3% of civilian males over the age of 16 years, and 53.7% of civilian females over the age of 16 years were employed [11]. US female employment data for the typical POTS demographic (females between ages 13-50 years [6]) is even higher, with 63.8% of females age 20-24 years, 77.1% of females age 30-34 years, and 79.2% of females age 40-44 years being employed [21]. These rates of employment are 15-30% higher than in our study (48.0% of females employed) [21].

A handful of smaller studies have reported on employment in POTS. A study of 94 POTS patients published in 2003 found that only 25% of the study population was unable to work because of POTS [13]. This underestimates the burden of employment reported in our current questionnaire which found that half of POTS patients (50.2%) were not working. However, our study data captures a much larger and geographically diverse patient population than this smaller study at a specialist center.

A UK based study [15] surveyed individuals with POTS, and found that 52% of POTS patients worked a median of 30 hours, similar to the median work hours of 35 in the current questionnaire. In a separate UK based study of 201 adult POTS patients, 36% were engaged in full time work or study, and 21% worked or went to school part time, for a total of 57% [22]. In this UK study, 29% of POTS patients also reported they were unable to work due to their POTS symptoms [22]. This UK study included students as “employed,” and this might account for the slight differences in rates of “employment” between their study and the current study.

The current POTS study population missed a median of 2.5 workdays per month due to POTS symptoms, which is equivalent to 30 missed workdays per year. This burden of lost work approaches the number of days missed by individuals with cancer (37.3 days/year), and exceeds the number of days missed by individuals with heart disease (12.7 days/year) and arthritis (6.7 days/year) [23]. Prior data have also shown poor health to be a risk factor for loss of paid employment [24], consistent with the current finding that 20.9% of employed POTS patients lost a job because of their POTS.

Financial and Societal Consequences:

The majority of POTS patients lost income due to their POTS symptoms, with 36% of POTS patients reporting a loss greater than $10,000 USD in the 12 months preceding the study. Participants with 18 or more years of education reported the greatest income losses, an expected result given that level of education is strongly related to income [25]. Additionally, the consequence to spouses and caregivers of the POTS patients is not insignificant, with over one-quarter of spouses/caregivers losing income due to caring for the participant. This is an important consideration when evaluating the impact of POTS on a patient and their support network.

The current study also provides insights into the societal consequences of POTS. First, our study suggests substantive productivity losses due to POTS as the majority of participants were of working age yet reported limitations in working hours resulting from their POTS symptoms. Second, although over two-thirds of participants reported income loss due to POTS symptoms, less than one-half of those patients applied for government financial assistance or benefits, with an application success rate of 64%. This may suggest barriers in both accessing financial assistance as well as the barriers in qualifying for support, perhaps due to a lack of understanding about their disorder by the disability evaluators.

Limitations:

Although there is representation from 31 countries in this study, the participants are predominantly from the USA. Due to differences in funded social support programs and unemployment support, it may be difficult to generalize these findings to an international cohort of individuals with POTS. Furthermore, our study findings may not be fully representative of males who suffer from POTS; the survey was predominantly completed by females (96%) which exceeds the reported prevalence of POTS in the clinical setting (i.e. approximately 80% female) [15]. Prior studies suggest sex differences in the likelihood of accessing health information on the internet [26, 27], which may account for a relatively low proportion of males completing the online study survey.

These questionnaire data are self-reported, and POTS patients could intentionally or unintentionally report inaccurate information, or complete the questionnaire more than once. The questionnaire took some patients up to 90 minutes to complete, so completing the questionnaire multiple times is unlikely. As well, the diagnostic criteria used by the diagnosing physician was not validated, and could deviate from the accepted criteria for the diagnosis of POTS.

Participants were primarily recruited through online social media. Individuals with POTS who did not have access to, or do not use, social media may have been unaware of the questionnaire. This study presents data from a much larger cohort than has been previously investigated, which increases the generalizability of these data. However, the questionnaire was written in English, which could have limited the participation to those who could read English (or readily obtain a translator).

Finally, the questionnaire did not specifically address non-POTS related reasons for not working. For example, we do not have information regarding the proportion of non-employed participants that were (a) pregnant, (b) full-time students, or (c) responsible for full time childcare. Nevertheless, the relatively high proportion of self-reported unemployment compared to the national average unemployment rates suggest an association between POTs and the ability to work.

Conclusions:

This data represents the largest cohort of POTS patients reporting on employment and economic impacts to date. POTS poses a significant risk for reduced employment and increased economic loss in individuals with this disorder and their caregivers. Employer education may help foster adaptive employment practices that allow more individuals with POTS to earn an income. Further research to understand the mechanisms of POTS and develop tangible treatments is also required to improve function and quality of life, to lessen economic burden and decrease employment challenges in this population.