7.2. Impact on daily life and functioning

← PREVIOUS: [[7.1. Variability in disease course and progression]] | NEXT: [[7.3. Strategies for managing fluctuations and relapses]] → -------- ##### Summary >[!Summary] >- Simple activities such as eating, showering, or low-intensity exercise may profoundly exacerbate symptoms and may significantly impair even the most rudimentary activities of daily living[[#^1]] >- POTS occurs in persons at a time when employment and physical activity are of primary importance[[#^2]] >- successful treatment will likely have to address multiple limitations and may require a multidisciplinary approach[[#^11]][[#^3]] >- potential economic burden of POTS is great, both in direct costs related to health care and in indirect costs related to disability[[#^10]] >- POTS affects quality of life considerably[[#^2]][[#^6]] >- Patients with POTS often remain symptomatic despite standard medical treatment and likely experience significant limitations in function that may benefit from similar interventions[[#^3]] >- POTS patients reported impairment across multiple domains of functioning, with the most severe impairment reported in vitality and role limitations due to physical health[[#^4]] >- Physical functioning, role functioning, bodily pain, general health, vitality, and social functioning were all significantly impaired compared with a healthy population[[#^4]] >- symptom severity is more strongly associated with physical and role functioning rather than psychological functioning[[#^7]][[#^9]] >- other symptoms of autonomic dysfunction (eg, upper GI tract symptoms, secretomotor dysfunction, pupillomotor symptoms) interfere with quality of life in patients with POTS[[#^8]] >- Fatigue is a prominent feature of POTS and may play an important role in patients’ quality of life[[#^12]] >- patients who reported more severe symptoms and those who were disabled or unable to work reported the greatest impairment in function[[#^13]] >- patients experience significant limitations across several domains of quality of life, including physical, social, and role functioning[[#^14]] >- patients are often unable to continue with their work, education, or activities of daily living[[#^15]] >- patients who had an antecedent event appeared to do better than those with spontaneous POTS[[#^16]] >- associated with a very poor quality of life and significant functional disability[[#^17]] >- Functional impairment in patients with POTS has been reported to be similar to that in chronic obstructive pulmonary disease and congestive heart failure[[#^18]] >- 25% are unable to work as a result of their disability[[#^18]] >- impaired quality of life and functional disability, which can be economically devastating[[#^19]] >- POTS symptoms can have a considerable impact on working lives [[#^20]] > >**Psychological Impact** >1. Crisis phase (patients are distressed by the trauma of their emerging illness and are not coping well with their diagnosis and/or symptoms) 35.4%[[#^35]] >2. Stabilization phase (patients better cope with their illness as they learn to recognize and manage their symptoms and realize that a return to full health is unlikely despite treatment) 14.6% [[#^35]] >3. Resolution phase (patients grieve the loss of their healthy bodies as they struggle to integrate their pre- and post-illness aspirations) 47.3% [[#^35]] >4. Integration (patients often construct a new identity as they integrate the reality of their illness into a meaningful life) 2.7% [[#^35]] >- superordinate themes: “fighting to be heard”, “my individual self-management toolbox”, “a mixed bag of emotions”, and “I’m expensive in so many ways”[[#^21]] >- importance of being heard and believed was a central aspect of living with POTS, this was complicated by misdiagnosis, which led to anger, feelings of being discredited and “fighting” for a diagnosis[[#^22]] >- feature of “fighting to be heard”, was palpable in some sense across the other themes[[#^22]] >- interactions with HCPs were not always straightforward, involved a battle to find the right specialist and took months, or even years. There was a palpable sense of this process being energy draining, part of the ongoing POTS struggle, not just with symptoms, but also with the healthcare system in general[[#^22]] >- most had at some point doubted the legitimacy of their own condition, but this was in response to HCP interactions and/or family members insinuation that being ill was their choice[[#^23]] >- participants felt they were fighting POTS on their own terms, they had to discern what was helpful for them and needed to advocate for their own “bespoke” care and self-treatment[[#^24]] >- feelings of guilt, of having let people down, losing friends and of not meeting people’s expectations ; “beating yourself up” for not being able to make prior arrangements[[#^25]] >- despite being told that POTS may possibly get better over time, a fatalistic attitude and limited hope of ever fully recovering, coupled with a prevailing sense of uncertainty about how symptoms may worsen[[#^26]] >- range of emotions experienced by participants with regards to their POTS prognosis and impact included constantly distressing symptoms and the emotional strain of being a burden to people around them[[#^26]] >- theme of living with POTS as being expensive in terms of reliance on others, being a burden, not only socially and emotionally, but also financially[[#^27]] >- the expense of healthcare was an issue, loss of earnings and welfare benefits[[#^27]] >- emotional and social costs, with reduced participation in work, social activities, and relationships. not only coping with debilitating symptoms, but also the grief of lost friendships, previously enjoyed activities and to a certain extent, loss of independence (loss associated with career, as POTS symptom exacerbations may result in not being able to continue at college)[[#^28]] >- comes at the expense of participants’ working lives, education, relationships, and financial situations[[#^29]] >- when symptoms first started to appear, participants struggled with having to “fight to be heard” in order to get a diagnosis (involved a variety of referrals to HCPs, multiple tests, disagreements and conflicting information between doctors and disparity in terms of diagnosis)[[#^30]] >- the nature of the “fight” seemed to transcend all themes to various degrees, as exemplified in negotiating with HCPs, navigating the healthcare system, information seeking, legitimacy of illness and own dissonance regarding self-belief about symptoms[[#^30]] >- demoralizing and counterproductive HCP interactions and negativity often found when seeking peer support in online forums[[#^31]] >- self-dissonance was evident in the struggle with decisions to disclose their diagnosis of POTS and concern about how others would view the legitimacy of their condition[[#^31]] >- When self-management did not work or work as well as expected, a sense of helplessness, anxiety, and uncertainty about prognosis returned[[#^32]] >- POTS pervaded all aspects of participants’ physical, psychological, social, and financial everyday lives[[#^33]] >- dealing with lack of understanding and disbelief clearly had an emotional impact[[#^34]] >- Social activities, such as outings required preplanning, and had the potential to be abandoned at short notice[[#^34]] >- the battle to manage symptoms may come at the expense of losing friends or a sense of guilt in having let people down and of not having met others’ expectations[[#^34]] >- severity of POTS symptoms at diagnosis as well as the chronicity of the disorder may limit the patient’s emotional and psychological capacity to transition from Crisis to Stabilization[[#^36]] >- Healthcare practitioners implying that patients somehow caused their disorder or symptomatology is counterproductive. Additionally, the diagnostic process itself may also lead to trauma related to testing and treatment[[#^36]] >- Feelings of anger, sadness, fear, isolation, and loss may flood the individual at various and unexpected times, particularly during the Crisis phase[[#^27]] >- Suicidal ideation is a concern in the POTS community. 47.2% of POTS patients had high risk scores and the Crisis group had the highest percentage (56.6%) at high risk for suicide [[#^38]] >- POTS communities are heterogeneous in illness severity and suffer from complicated remitting and relapsing symptoms with a significant decrease in quality of life due to fatigue, pain, and sleep disturbance[[#^39]] >- physical disability in POTS, the complexity, combined with its invisible nature, may contribute to feelings of loneliness[[#^40]] >- for the 25% who are disabled and unable to work or go to school, loss of social interaction can increase isolation[[#^40]] >- nearly 65% of POTS patients reported scores indicating high-risk for suicide, and 18% had already made at least one attempt. 13% stated that it was likely that they would attempt suicide in the future, 33% had elevated Perceived Burdensomeness scores, 35% conveyed severe to extreme depression, 71% reported Thwarted Belongingness, and 76% described high or very high levels of loneliness[[#^41]] >- Perceived Burdensomeness was the strongest predictor of suicide risk in this study of POTS patients[[#^42]] >- Compared with controls, POTS patients had significantly higher suicide risk and more had threatened, planned, or attempted suicide[[#^46]] >- Nearly 25% of POTS patients are so disabled that they cannot work or attend school and have a quality of life similar to patients with congestive heart failure or chronic obstructive pulmonary disorder[[#^42]] >- In one study, 97% of POTS patients were limited by their illness and 30% required assistance for basic personal care [[#^42]] >- POTS patients experienced more days of sadness with approximately 76% needing help with routine activities such as shopping, and 30% needing help with personal care[[#^43]] >- Multiple domains have been implicated in the reduced QOL including impaired sleep, cognitive impairment, fatigue, stamina, and pain[[#^44]] >- POTS patients are often young persons that would otherwise have many productive years of life ahead of them[[#^44]] >- there is increasing recognition that cognitive and emotional factors are a significant part of the illness burden[[#^48]] -------- >*“Simple activities such as eating, showering, or low-intensity exercise may profoundly exacerbate ([p. 1](zotero://open-pdf/library/items/I4WAD8AG?page=1&annotation=4HIELYZG)) these symptoms and may significantly impair even the most rudimentary activities of daily living. Somewhat paradoxically, the magnitude of these symptoms is often significantly greater than those observed in patients with obvious clinically detectable autonomic failure.” *([[Low-2009]], [p. 2](zotero://open-pdf/library/items/I4WAD8AG?page=2&annotation=TDXANLIG))^1 >*“POTS occurs in persons between the ages of 20 and 50 years, at a time when employment and physical activity are of primary importance.[2] Clinical observations suggest that POTS affects quality of life considerably;” *([[Benrud-Larson-2002]], [p. 1](zotero://open-pdf/library/items/HUAS79XY?page=1&annotation=3EAMBI8J))^2 >*“research has shown that multidisciplinary interventions are often needed to restore function and improve quality of life despite continuing symptoms. ([p. 1](zotero://open-pdf/library/items/HUAS79XY?page=1&annotation=EWTYL85Q)) Patients with POTS often remain symptomatic despite standard medical treatment [3] and likely experience significant limitations in function that may benefit from similar interventions.” *([[Benrud-Larson-2002]], [p. 1](zotero://open-pdf/library/items/HUAS79XY?page=1&annotation=EYNRXD94))^3 >*“patients with POTS reported impairment across multiple domains of functioning, with the most severe impairment reported in vitality and role limitations due to physical health. Physical functioning, role functioning, bodily pain, general health, vitality, and social functioning were all significantly impaired compared with a healthy population” *([[Benrud-Larson-2002]], [p. 3](zotero://open-pdf/library/items/HUAS79XY?page=3&annotation=V6L9PLJG))^4 >![[Benrud-Larson-2002-4-x89-y334.png#invert_B| 600]] >([[Benrud-Larson-2002]], [p. 4](zotero://open-pdf/library/items/HUAS79XY?page=4&annotation=MDIHHIC6))^6 >*“symptom severity is more strongly associated with physical and role functioning rather than psychological functioning” *([[Benrud-Larson-2002]], [p. 4](zotero://open-pdf/library/items/HUAS79XY?page=4&annotation=QS2QSYMW))^7 >*“other symptoms of autonomic dysfunction (eg, upper GI tract symptoms, secreto- ([p. 4](zotero://open-pdf/library/items/HUAS79XY?page=4&annotation=6NHRCHG5))* motor dysfunction, pupillomotor symptoms) interfere with quality of life in patients with POTS.” *([[Benrud-Larson-2002]], [p. 5](zotero://open-pdf/library/items/HUAS79XY?page=5&annotation=6BUFU5ZM))^8 >![[Benrud-Larson-2002-5-x313-y458.png#invert_B| 400]] >([[Benrud-Larson-2002]], [p. 5](zotero://open-pdf/library/items/HUAS79XY?page=5&annotation=BAKPUU8E))^9 >*“the potential economic burden of POTS is great, both in direct costs related to health care and in indirect costs related to disability” *([[Benrud-Larson-2002]], [p. 5](zotero://open-pdf/library/items/HUAS79XY?page=5&annotation=BGK64GQ7))^10 >*“Successful treatment, at least for some patients with POTS, will likely have to address multiple limitations and may require a multidisciplinary approach.” *([[Benrud-Larson-2002]], [p. 5](zotero://open-pdf/library/items/HUAS79XY?page=5&annotation=I5EC3H4S))^11 >*“Fatigue is a prominent feature of POTS and may play an important role in patients’ quality of life” *([[Benrud-Larson-2002]], [p. 5](zotero://open-pdf/library/items/HUAS79XY?page=5&annotation=BLDAGLQQ))^12 >*“patients who reported more severe symptoms and those who were disabled or unable to work reported the greatest impairment in function.” *([[Benrud-Larson-2002]], [p. 5](zotero://open-pdf/library/items/HUAS79XY?page=5&annotation=7RD4QAHP))^13 >*“these patients experience significant limitations across several domains of quality of life, including physical, social, and role functioning. Health care practitioners must recognize the multiple impairments that often accompany POTS and address not only the physical aspects of the condition but also the social ones.” *([[Benrud-Larson-2002]], [p. 7](zotero://open-pdf/library/items/HUAS79XY?page=7&annotation=Y7R9N6NB))^14 >*“patients are often unable to continue with their work, education, or activities of daily living” *([[Sandroni-1999]], [p. 1](zotero://open-pdf/library/items/X25GXI7E?page=1&annotation=VPXPW4I6))^15 >*“On follow-up, 80% of patients were improved, 60% were functionally normal, and 90% were able to return to work. Patients who had an antecedent event appeared to do better than those with spontaneous POTS.” *([[Sandroni-1999]], [p. 1](zotero://open-pdf/library/items/X25GXI7E?page=1&annotation=CSJBKMMK))^16 >*“POTS is associated with a very poor quality of life and significant functional disability” *([[Raj-2009a]], [p. 2](zotero://open-pdf/library/items/RTRQALDF?page=2&annotation=4Q77IZZ3))^17 >*“Functional impairment in patients with POTS has been reported to be similar to that in chronic obstructive pulmonary disease and congestive heart failure [6]; 25% are unable to work as a result of their disability” *([[Garland-2015]], [p. 2](zotero://open-pdf/library/items/CAWTWYLR?page=2&annotation=GXQF9UUI))^18 >*“Patients may experience impaired quality of life and functional disability, which can be economically devastating”* ([[Raj-2022]], [p. 1](zotero://open-pdf/library/items/YN8BG2FZ?page=1&annotation=2LDBD9QL))^19 >*“there was considerable variability in levels of functioning between participants, with some being able to work full-time whilst others were unable to work at all, which is in line with previous findings that POTS symptoms can have a considerable impact on working lives [1,31].”* ([[Knoop-2023]], [p. 7](zotero://open-pdf/library/items/P2VFKVHY?page=7&annotation=RHY676HJ))^20 ##### Psychological Impact >*“Analysis revealed four superordinate themes, which were salient to the experiences of all participants, they were labelled: “fighting to be heard”, “my individual self-management toolbox”, “a mixed bag of emotions”, and “I’m expensive in so many ways”.”* ([[Knoop-2023]], [p. 4](zotero://open-pdf/library/items/P2VFKVHY?page=4&annotation=ZA2IWK5E))^21 >*“The importance of being heard and believed was a central aspect of living with POTS, this was complicated by misdiagnosis, which led to anger, feelings of being discredited and “fighting” for a diagnosis. Whilst a theme on its own, the feature of “fighting to be heard”, was palpable in some sense across the other themes. Interactions with HCPs were not always straightforward, involved a battle to find the right specialist and took months, or even years. There was a palpable sense of this process being energy draining, part of the ongoing POTS struggle, not just with symptoms, but also with the healthcare system in general.”* ([[Knoop-2023]], [p. 4](zotero://open-pdf/library/items/P2VFKVHY?page=4&annotation=K9M5Y4TF))^22 >*“Most participants (N ¼ 5) had at some point doubted the legitimacy of their own condition, but this was in response to HCP interactions and/or family members insinuation that being ill was their choice.”* ([[Knoop-2023]], [p. 4](zotero://open-pdf/library/items/P2VFKVHY?page=4&annotation=8N5GDJZY))^23 >*“Participants felt they were fighting POTS on their own terms, they had to discern what was helpful for them and needed to advocate for their own “bespoke” care and self-treatment.”* ([[Knoop-2023]], [p. 5](zotero://open-pdf/library/items/P2VFKVHY?page=5&annotation=7JGBZFQH))^24 >*“However, not all of Lynette’s friends were as supportive, she described experiencing feelings of guilt, of having let people down, losing friends and of not meeting people’s expectations. This viewed was shared by Dani, who described “beating herself up” for not being able to make prior arrangements.”* ([[Knoop-2023]], [p. 6](zotero://open-pdf/library/items/P2VFKVHY?page=6&annotation=A94JCX7X))^25 >*“None of the participants expected to be cured or symptomfree, but Anna explained how she hoped for things to become easier in terms of day to day improvements, advocating for better management and, ideally a cure being discovered someday. However, this was in contrast to Dani who felt that a cure was a long way off and of little consequence to her current situation. This resigned outlook was shared by Margo, despite having been told that POTS may possibly get better over time, she held a fatalistic attitude and limited hope of ever fully recovering, coupled with a prevailing sense of uncertainty about how her symptoms may worsen. The range of emotions experienced by participants with regards to their POTS prognosis and impact included constantly distressing symptoms and the emotional strain of being a burden to people around them. Despite there being a battle to come to terms with the possibility of having to live with the uncertainty of POTS, for some hope and adversarial growth prevailed.”* ([[Knoop-2023]], [p. 6](zotero://open-pdf/library/items/P2VFKVHY?page=6&annotation=S4VDB6Z5))^26 >*“The final theme viewed living with POTS as being expensive in terms of reliance on others, being a burden, not only socially and emotionally, but also financially. In the US in particular, the expense of healthcare was an issue, loss of earnings and welfare benefits (or lack of) caused additional stress to some participants.”* ([[Knoop-2023]], [p. 6](zotero://open-pdf/library/items/P2VFKVHY?page=6&annotation=XTU2CL39))^27 >*“In addition, there were also emotional and social costs, with reduced participation in work, social activities, and relationships. Participants not only coped with debilitating symptoms, but also the grief of lost friendships, previously enjoyed activities and to a certain extent, loss of independence. For Dani, there was sense of loss associated with her career, as POTS symptom exacerbations resulted in not being able to continue at college.”* ([[Knoop-2023]], [p. 6](zotero://open-pdf/library/items/P2VFKVHY?page=6&annotation=IGT8ZL5Y))^28 >*“Living with POTS came at the expense of participants’ working lives, education, relationships, and financial situations.”* ([[Knoop-2023]], [p. 6](zotero://open-pdf/library/items/P2VFKVHY?page=6&annotation=RL5TJ3TA))^29 >*“When symptoms first started to appear, participants struggled with having to “fight to be heard” in order to get a diagnosis. This involved a variety of referrals to HCPs, multiple tests, disagreements and conflicting information between doctors and disparity in terms of diagnosis, which is similar to the experiences of people with CFS [23]. However, the nature of the “fight” seemed to transcend all themes to various degrees, as exemplified in negotiating with HCPs, navigating the healthcare system, information seeking, legitimacy of illness and own dissonance regarding self-belief about symptoms.”* ([[Knoop-2023]], [p. 6](zotero://open-pdf/library/items/P2VFKVHY?page=6&annotation=Z5SCNJ37))^30 >*“participants voiced how they had coped with demoralizing and counterproductive HCP interactions and the negativity often found when seeking peer support in online forums. In addition, self-dissonance was evident in the struggle with decisions to disclose their diagnosis of POTS and concern about how others would view the legitimacy of their condition.”* ([[Knoop-2023]], [p. 7](zotero://open-pdf/library/items/P2VFKVHY?page=7&annotation=2ZMZSZFD))^31 >*“When self-management did not work or work as well as expected, a sense of helplessness, anxiety, and uncertainty about prognosis returned, which is in keeping with previous research into the psychological correlates of POTS”* ([[Knoop-2023]], [p. 7](zotero://open-pdf/library/items/P2VFKVHY?page=7&annotation=23JNH23P))^32 >*“It was clear that POTS pervaded all aspects of participants’ physical, psychological, social, and financial everyday lives”* ([[Knoop-2023]], [p. 7](zotero://open-pdf/library/items/P2VFKVHY?page=7&annotation=ENNSFWQL))^33 >*“In addition, to having to cope with the symptoms, implications and management of this condition, dealing with lack of understanding and disbelief clearly had an emotional impact on participants. Social activities, such as outings required preplanning, and had the potential to be abandoned at short notice. For one participant, the battle to manage symptoms came at the expense of losing friends, whilst others relayed a sense of guilt in having let people down and of not having met others’ expectations.”* ([[Knoop-2023]], [p. 7](zotero://open-pdf/library/items/P2VFKVHY?page=7&annotation=XLS5KF6J))^34 >![[Zotero/Zotero Images/Pederson-2020-6-x99-y301.png]] >([[Pederson-2020]], [p. 6](zotero://open-pdf/library/items/VVH4N6QQ?page=6&annotation=8TI3EAJH)) > >- *“In the Crisis phase, patients are distressed by the trauma of their emerging illness and are not coping well with their diagnosis and/or symptoms ([p. 3](zotero://open-pdf/library/items/VVH4N6QQ?page=3&annotation=VAEE3NH9)) [...]* >- *In the Stabilization phase, patients better cope with their illness as they learn to recognize and manage their symptoms and realize that a return to full health is unlikely despite treatment ( [p. 3](zotero://open-pdf/library/items/VVH4N6QQ?page=3&annotation=CU6QGMMM)) [...]* >- *In the Resolution phase, patients grieve the loss of their healthy bodies as they struggle to integrate their pre- and post-illness aspirations ([p. 3](zotero://open-pdf/library/items/VVH4N6QQ?page=3&annotation=VNF38JST)) [...]* >- *In the final phase, Integration, patients often construct a new identity as they integrate the reality of their illness into a meaningful life”* ([[Pederson-2020]], [p. 3](zotero://open-pdf/library/items/VVH4N6QQ?page=3&annotation=99C2P3H9))^35 >*“The severity of POTS symptoms at diagnosis as well as the chronicity of the disorder may limit the patient’s emotional and psychological capacity to transition from Crisis to Stabilization. Healthcare practitioners implying that patients somehow caused their disorder or symptomatology is counterproductive. Additionally, the diagnostic process itself may also lead to trauma related to testing and treatment.”* ([[Pederson-2020]], [p. 8](zotero://open-pdf/library/items/VVH4N6QQ?page=8&annotation=KVFFLVCE))^36 >*“Feelings of anger, sadness, fear, isolation, and loss may flood the individual at various and unexpected times, particularly during the Crisis phase.”* ([[Pederson-2020]], [p. 8](zotero://open-pdf/library/items/VVH4N6QQ?page=8&annotation=4YQUBTSC))^37 >*“Suicidal ideation is a concern in the POTS community [20,21]. In this study, 47.2% of POTS patients had high risk scores and the Crisis group had the highest percentage (56.6%) at high risk for suicide.”* ([[Pederson-2020]], [p. 10](zotero://open-pdf/library/items/VVH4N6QQ?page=10&annotation=4U8THZFN))^38 >*“POTS communities are heterogeneous in illness severity and suffer from complicated remitting and relapsing symptoms [6,22] with a significant decrease in quality of life due to fatigue, pain, and sleep disturbance [23].”* ([[Pederson-2020]], [p. 10](zotero://open-pdf/library/items/VVH4N6QQ?page=10&annotation=RX9TNFZB))^39 >*“The physical disability in POTS may contribute to feelings of loneliness [18]. For the 25% who are disabled and unable to work or go to school [3], loss of social interaction can increase isolation [28]. Loneliness is a known risk factor for suicide, even in the general population [29-31]. The complexity of POTS, combined with its invisible nature, may contribute to feelings of loneliness”* ([[Pederson-2018a]], [p. 1](zotero://open-pdf/library/items/M2CWX5ZN?page=1&annotation=NYULM544))^40 >![[Zotero/Zotero Images/Pederson-2018a-3-x31-y150.png]] >([[Pederson-2018a]], [p. 3](zotero://open-pdf/library/items/M2CWX5ZN?page=3&annotation=D53XUAK9)) > >*“In this study, nearly 65% of women diagnosed with POTS reported scores indicating high-risk for suicide, and 18% had already made at least one attempt. Additionally, 13% stated that it was likely that they would attempt suicide in the future, 33% had elevated Perceived Burdensomeness scores, 35% conveyed severe to extreme depression, 71% reported Thwarted Belongingness, and 76% described high or very high levels of loneliness”* ([[Pederson-2018a]], [p. 5](zotero://open-pdf/library/items/M2CWX5ZN?page=5&annotation=NSRQKPLS))^41 >*“Perceived Burdensomeness was the strongest predictor of suicide risk in this study of POTS patients. POTS significantly decreases quality of life [3,13,18,43,44]. Nearly 25% of POTS patients are so disabled that they cannot work or attend school and have a quality of life similar to patients with congestive heart failure or chronic obstructive pulmonary disorder [3]. The high level of disability experienced by many POTS patients may lead to feelings of perceived burdensomeness. In one study, 97% of POTS patients were limited by their illness and 30% required assistance for basic personal care [18].”* ([[Pederson-2018a]], [p. 5](zotero://open-pdf/library/items/M2CWX5ZN?page=5&annotation=SQGCIE5I))^42 >*“Pederson et al. recently examined the functional meaning of diminished QOL in adult POTS patients in a large survey-based study of symptoms.18 They found that physical and mental health ratings were significantly lower in POTS compared with healthy subjects. POTS patients experienced more days of sadness with approximately 76% needing help with routine activities such as shopping, and 30% needing help with personal care.”* ([[Raj-2018]], [p. 3](zotero://open-pdf/library/items/IYRK4T6C?page=3&annotation=WI8AUVUK))^43 >*“there is clear evidence for reduced QOL in POTS patients. This finding is consistent for physical health parameters, but is variable for mental health parameters. Multiple domains have been implicated in the reduced QOL including impaired sleep, cognitive impairment, fatigue, stamina, and pain. The finding that physical health-related QOL is impaired similarly among POTS, CHF and COPD is of particular concern,7 as POTS patients are often premenopausal women that would otherwise have many productive years of life ahead of them.”* ([[Raj-2018]], [p. 3](zotero://open-pdf/library/items/IYRK4T6C?page=3&annotation=RLVDX78P))^44 >*“Compared with controls, POTS patients had significantly higher suicide risk and more had threatened, planned, or attempted suicide.”* ([[Raj-2018]], [p. 6](zotero://open-pdf/library/items/IYRK4T6C?page=6&annotation=KVDJRV3W))^45 >*“They found significant correlation between suicidal ideation and diminished overall sleep quality, delayed sleep latency, bad dreams, difficulty staying awake, and diminished enthusiasm in POTS.”* ([[Raj-2018]], [p. 6](zotero://open-pdf/library/items/IYRK4T6C?page=6&annotation=56GN5YBE))^46 >*“POTS patients are at increased risk for mental distress and suicidal ideation. It is also concerning that more patients with POTS report attempting suicide than healthy subjects since prior suicide attempts are a strong predictor of future ([p. 6](zotero://open-pdf/library/items/IYRK4T6C?page=6&annotation=PHCS9934)) suicide attempts.”* ([[Raj-2018]], [p. 7](zotero://open-pdf/library/items/IYRK4T6C?page=7&annotation=TDS862SD))^47 >*“there is increasing recognition that cognitive and emotional factors are a significant part of the illness burden”* ([[Raj-2018]], [p. 11](zotero://open-pdf/library/items/IYRK4T6C?page=11&annotation=UWR5TAK3))^48