Quality of Life in Patients with Postural Orthostatic Tachycardia Syndrome (POTS)

By Lisa M. Benrud-Larson, PhD; Melanie S. Dewar, BS; Paola Sandroni, MD, PhD; Teresa A. Rummans, MD; Jennifer A. Haythornthwaite, PhD; and Phillip A. Low, MD

Objectives:
To quantify quality of life and identify demographic and clinical correlates of functioning in a well-characterized sample of patients with postural tachycardia syndrome (POTS).

Patients and Methods:
Prospective patients were those seen at the Mayo Clinic Autonomic Disorders Laboratory from September 2000 to June 2001. Neurologists made diagnoses of POTS according to established criteria. Patients completed a questionnaire packet that included measures of quality of life (36-Item Short-Form Health Survey [SF-36]) and symptom severity (Autonomic Symptom Profile). Additional clinical information was abstracted from medical records.

Results:
Ninety-four patients (89% female; mean age, 34.2 years) were enrolled in the study. Patients with POTS reported impairment across multiple domains on the SF-36. Physical functioning, role functioning, bodily pain, general health, vitality, and social functioning were all significantly impaired compared with a healthy population (P<.01 for all) and similar to that reported by patients with other chronic, disabling conditions. Hierarchical regression analyses revealed that symptom severity (β = -.36,
P<.001) and disability status (β = -.36, P<.001) were independent predictors of SF-36 physical component scores, with the full model accounting for 54% of the variance (P<.001). None of the variables examined accounted for a significant amount of the variance in SF-36 mental component scores.

Conclusions:
Patients with POTS experience clear limitations across multiple domains of quality of life, including physical, social, and role functioning. Treatment should address the multiple and varied impairments experienced by these patients and may require a multidisciplinary approach. Future research must further delineate factors, both disease related and psychosocial, that predict functioning and adjustment in this population.

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3 responses to this post.

  1. Posted by laura flasher on November 28, 2010 at 1:03 pm

    My sister recently had a stroke. The Drs said a small clot had hit her brain stem and she had right sided hemiparesis, they also found a small anurysm in the middle of the frontal lobe. She is home and was doing well however now she is experiencing orthostatic tachycardia. She is exhausted all the time. She says she feels cold, dizzy, and her whole body feels tingly when these attacks occur which is frequently. What else should we let the Dr. know and what questions should we ask?

    Reply

    • Laura,
      I am sorry to hear about your sister’s ill fate with the strokes.
      The brain issues you described actually can cause anywhere from mild to severe Dysautonomia, that is not uncommon.
      I encourage you to watch the below video: a friend of mine had a similar stroke in her brain stem and has suffered from Dysautonomia since the incident.
      http://www.youtube.com/watch?v=-Blshb2RVMk [copy and paste this url into your computer]

      What I would do at the next doctor’s visit is take with you any and all information you can find about Dysautonomia, P.O.T.S., and their relation to brain injury/trauma (including strokes and aneurysms) from trusted websites (Mayo Clinic, DINET.org, Medicine.net, etc etc), highlight the pertinent information and explain to him your concerns. If he is a good doctor, he WILL listen to you and be willing to learn more about this in order to give your sister the best treatment that she DESERVES. If he doesn’t, then you need to find a doctor who will listen. Since Dysautonomia is often misdiagnosed and not well understood in the majority of the medical community, it’s vital for your sister to have a good doctor-patient relationship, one who treats her with genuine care and concern. I know of a few good ones here in my area (mid-west), let me know if that would apply to you.
      Please keep me posted on your progress, and if there’s anything else I can do to help, let me know.
      Will keep you both in my thoughts and prayers.
      Take care, and you’re not alone!

      Reply

  2. I know what it feels like as a teen with chronic fatigue and P.O.T.S its hard and difficult to get through, but you do get through! I’ve been diagnosed since October 2010 and have been dealing with it since! I’ve been looking for a website to have information and support and haven’t found a great one, so I decided to start my own. I’ve never done anything with blogging or websites before, so bare with me as I try to learn the ropes and grow and upgrade my website.

    If you want more support or information visit my website blamingtheinvisibleman.blogspot.com

    Reply

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