Category Archives: Patient Education

How to Find Accurate Scientific Information on the Web

Patient Education, patient resources, research

As both a POTS patient and a researcher, my goal in writing this blog post is to help all POTS patients find reliable information on their illness and become a refined connoisseur of scientific literature. By doing this, you can generate intelligent hypotheses and engage in meaningful discussions with doctors and scientists – because we need your help. You don’t need a doctorate degree to contribute to science.

When I first started researching POTS in a laboratory setting, I thought I knew a lot about the disorder since I had done my own online research for years. I had no idea how much of what I “knew” about POTS was based on speculation or even incorrect information.

For instance, I thought that POTS involved an overstimulation of the sympathetic nervous system that led to symptoms, because I read about it on so many blogs, websites, and Wikipedia. Talking with my mentors and digging deep into the existing scientific literature, I found out that it’s not that simple. In fact, I learned that most POTS patients actually have a blunted increase in sympathetic nerve activity upon standing.

Published scientific papers are much more reliable than other sources of information because they are peer-reviewed. This means that before a paper is accepted and published by a journal, it is sent to at least two experts in the field who either approve, suggest revisions be made, or reject the paper. The peer-review process helps ensure that the research is meaningful and that the paper is a valid representation of the study.

There are three main types of research papers:

1.     Case Reports and Case Series
Case reports and  series are detailed reports of an individual or a small series of patients. Case reports and series are often used to describe a rare disease, or an unusual presentation of a common disease. The report includes patient demographic information, as well as symptoms, diagnosis, and treatment of the disease. However, case reports and series only contain anecdotal information about one patient or a small number of patients; they are not science and most are not peer-reviewed. Case reports are given the least weight and credibility by medical professionals and researchers.

2.     Original Research Articles
Original research articles contain a detailed report from the researchers about the study they conducted. Original research articles are usually divided into five parts: (1) the abstract which summarizes the study; (2) the introduction, which gives you some background and states the objective and hypothesis for the study; (3) the methods that explain how the study was conducted; (4) the results; and (5) the discussion or conclusion which puts the results in the context of the field of research and explains the study’s significance and implications. Original research articles are a primary source and there is no better way to gather information than directly from the researchers themselves.

There are many different types of original research articles, and the study design is the major factor in determining how much weight to give a study. Observational studies, such as questionnaires, study research subjects at one or more time points, but no intervention is given. An interventional study looks at the effect of a certain treatment (a drug, exercise, diet, etc.) on a group of subjects and either compares the subjects to themselves before the intervention or to a control group. When reading interventional studies look for keywords in the methods like “control,” “placebo-control”, “blind” and “double-blind,” “crossover,” and “randomized.” A control group is a group of subjects that did not receive treatment, which is compared to a treatment group. A placebo-control means that one group received a placebo treatment instead of the active treatment. A placebo is a “fake” treatment, like a sugar pill or an injection that doesn’t contain any drug. In blinded studies the subjects don’t know what treatment they receive and in double-blinded studies neither the subjects nor the researchers are aware of the treatment (usually a nurse or lab technician knows the treatments for safety reasons). In a crossover study, each subject receives more than one treatment during the study duration and randomized means that the order that the treatments are given varies across subjects. All of these design features strengthen the study and make the results more compelling.

3.     Review Articles
Review articles are papers that summarize a certain topic by discussing results from numerous original research articles. There are pros and cons to review articles. They are great for getting a broad overview of a topic. Journals invite experts on certain topics to write review articles and they are also peer-reviewed so the information is very reliable. The downside is that review articles do not go into the methods of every study they cite and the authors can sometimes misinterpret the primary literature in the review article. Therefore, if you read a review article I would suggest that you look at the references and find the original review articles that correspond to the sections that interested you and skim those as well.

Reading peer-reviewed research and review articles is a good start, but keep in mind that not all journals carry the same weight. A journal’s impact factor is a good indicator of how important the information it publishes is. A study that will change the face of medicine can get into a high impact journal like The Journal of the American Medical Association or JAMA (impact factor = 30) or for groundbreaking cardiovascular research, Circulation (impact factor = 15). Other studies with less powerful data may be published in lower impact journals like Clinical Autonomic Research (impact factor = 1.5). This doesn’t mean that a journal with a low impact factor contains false information, articles in these journals are peer-reviewed as well, yet the data may not be as compelling or noteworthy. Low impact journals often focus on more specific topics for a targeted audience, which can be a good thing. For example, Circulation is read by most cardiologists, but it does not publish many papers on POTS. On the other hand, Clinical Autonomic Research publishes on POTS often and is read by most who study disorders of the autonomic nervous system.

However, just because something is published in a good peer-reviewed journal doesn’t mean it’s a proven fact. For example, we have all heard that “500,000 Americans have POTS.” This factoid has been published in dozens of credible journal articles which all cited to one paper for this estimate. Yet the “original” paper had no discussion to how this estimate was made. This “fact” was an educated guess made by experts in the field, which I found out by contacting the author directly. This experience taught me to be a critical reader and get to the source of a fact to see how accurate and precise it is.

If I’ve learned anything from being involved in medical research for the past three years, it’s to not believe everything I read. I encourage you all to become informed patients. Search for papers from credible peer-review journals and become a critical reader of scientific literature. Below are some tips to get you started.

How to find a credible journal article
1.     Search for primary literature on databases like PubMed.gov and Google Scholar. Don’t believe everything you read on Facebook groups, blogs, Wikipedia or commercial websites. You can also find links to many primary sources on POTS and other autonomic disorders on the Dysautonomia International website.

2.     Review articles on Medscape, Up to Date, and in most journals are good for a broad overview of a topic, but check the articles they cite before accepting anything as fact.

3.     When you find a paper, look at the journal’s name and impact factor. The higher the impact factor, the more highly regarded the journal. This is usually available on the journal’s website.

4.     Look at the author affiliations – are they from a well-known school/hospital with a reputable autonomic lab?

5.     Look at the senior author (last author on the list). He or she is the one that oversaw the study. Do you recognize his or her name as an autonomic expert?

6.     Look at the author(s) prior publications. If you click on the authors name on PubMed.gov, there is usually a link to other studies they have published. Have they published other studies on POTS or other autonomic disorders? If you can’t find this on PubMed.gov, the researcher may have a list of publications on his or her biography page, which can often be found on the website of the university he or she is affiliated with.

How to critically read an original research paper
1.  Start with the abstract – this is the summary. See if this article is interesting to you and worth reading.

2.  Read the introduction. Look for the purpose of this study. Read about what was known and unknown prior to this study to give yourself some context. Sometimes the background for a study can lead you to another fascinating paper to read later.

3.   Glance at the methods. See what was actually done in the study. You don’t have to understand all the details of the methods, but make sure the methods make sense for the topic. Some methods are more reliable and valuable than others and you will learn this over time.

4.   Look at the results and figures. Check what is statistically significant (if P < 0.05, it’s significant). If it’s not statistically significant, it’s not a solid finding.

5.   Ask yourself, do the conclusions make sense based on the results? The conclusions can sometimes be much broader than what the results actually warrant.

6.   If this study involves human subjects and you are trying to decide if these findings apply to your circumstance, check the inclusion criteria in the methods section. Also look at subjects’ demographic data (ie. age, gender, race, etc.) in the results to see if the study subjects are similar to you.

7.  Do not be afraid to get to the source. If you have questions about the research paper, send a respectful and concise email the corresponding author. Usually their email is listed on the first page of the paper.

 

735619_10200497815672835_1483624716_oGuest contributor Amanda Ross graduated from Johns Hopkins University with a B.A. in Behavioral Biology. Working with noted POTS researchers, Dr. Julian Stewart and Dr. Peter Rowe, Amanda has published two peer-reviewed research papers on POTS. She also gave a presentation on one of her studies to fellow researchers at the 24th International Symposium on the Autonomic Nervous System. She is currently pursuing a Ph.D. in Neuroscience at Pennsylvania State University College of Medicine and looks forward to conducting additional research on POTS and the autonomic nervous system. Amanda is a founding member of the Dysautonomia International Patient Advisory Board.

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Supporting Relationships Through Chronic Illness

Patient Education

Today’s guest post is from Dr. Morwenna Opie.  Dr. Opie is a Clinical Psychologist who works at the Nightingale Hospital in London, UK.  She specializes in supporting patients with chronic health conditions.  Dr. Opie has a unique perspective amongst medical professionals on what life with dysautonomia is really like – she has been diagnosed with POTS secondary to Sjögren’s Syndrome.

Supporting Relationships Through Chronic Illness
As January is such a traditional time to assess our priorities, goals and wishes for the year ahead, it is worth dedicating some time amidst plans for nutritional tweaks and life-style changes to consider the important relationships in our lives (with partners, with friends, and with ourselves).  This is especially pertinent for people dealing with the additional strains of chronic illness, where feelings of isolation and relationship difficulties can be a major part of the disease burden.  Many patients cite ‘brain-fog’ and related cognitive difficulties as the worst aspect of their illness, in part because if effects their ability to interact effectively with others.  Fatigue and physical difficulties also create enormous changes in how we are able to spend time and share experiences with others.

Healthy, supportive, and fun relationships can be our greatest asset in shaping a happy and fulfilling life, and this is especially the case when opportunities for physical activity are more limited.  Equally however, maintaining unhealthy relationships can be more toxic to our health as those chocolate binges or caffeine or whatever else we might have resolved to do away with this month.  The evidence continues to accrue demonstrating that social stressors and anxiety takes their toll on our immunological functioning, and all aspects of our physiology, with the potential to cause a vicious cycle of deteriorating physical and mental health – and relationships.  All friendships, even at the best of the times, need ongoing review and nurturing to be most rewarding.  There are times when relationships need to be recognised as damaging to the low-stress and positive environment we need to cultivate to maximise our health, requiring major changes or severance.  A positive aspect of being unwell can be the clarity that comes about what is important and where our priorities lie.

Life partners or parents also experience grief, loss, and frustration at seeing their loved-ones at the mercy of a cruel and unpredictable illness.  Life can be challenging in many ways, and with one partner ill, significant financial and practical burdens fall on the other-half. Partners with a chronically ill spouse are, for example, six times more likely to be clinically depressed.  The ensuing exhaustion can prevent the clear communication required to prevent a negative spiral of misunderstanding and misinterpretation.  Such ‘mind-reading’ is at the heart of many a relationship break-down that I have worked with.

Dysautonomia Patient: “It’s been a tough day today fatigue-wise.”
Healthy Partner: “Yes, I feel exactly the same, totally pooped.”


Dysautonomia Patient: “Are you worried about me?”
Healthy Partner: “No.”

I imagine many can smile with recognition at the first quote above about tiredness/fatigue.  There is significant potential here for a row – the dysautonomia sufferer feeling that their fatigue isn’t sufficiently understood as different to ‘normal’ tiredness, the healthy partner feeling that their genuine grievances aren’t recognised or supported.  Happily, there is also opportunity here for loving support, a connection in shared-experience and to engage in appropriate choices from activity menus (see below)… and possibly a discussion around what true fatigue is like at a later date!  The second quote represents another oft-experienced area of misunderstanding, rather typical of male-female miscommunication.  The healthy partner’s “no” response may express his belief that all will be well and his partner will conquer all – she may well interpret it as him not caring.  Sorting these requires regular and clear communication at appropriate times, often in a different or allocated environment, when both parties are as well fed and rested as possible.

Some tips for life partner relationships:

  • Communication is king.  But within limits.  A daily check-in (possibly a rating out of 10) is good, but otherwise allocate specific clear times to update them on testing, meds, symptoms, etc., so they are informed but not constantly barraged (it’s not as interesting to anyone else as it is to us, even loved ones!).  Always check-in with how your partner is doing too and what their principle stressors are, or have a separate regular time for this.
  • Allocate times when health-chat is off-limits and you celebrate other aspects of yourself and your partner.
  • Health can be so unpredictable (if only there was an App you could check how you would feel the next day, like there is for weather).  If you plan time together it is worth having a few ‘activity menus’ based on what you can manage at different times so if you are in a dip there are alternative ideas up your sleeves and needn’t dwell or be stuck with indecision but crack on with another plan you can both enjoy.
  • Humour is also king. If there are issues to bring up this can often be done playfully. An example is to present a multiple-choice quiz, e.g.:

When I experience fatigue it feels like:

  1. A bit tired because I’ve been lying down all day
  2. Tired like you feel after a busy day and going to the gym
  3. Tired like I haven’t slept for 48 hours and prior to that I had run a marathon
  4. Tired like all of the above plus feeling like the tired you feel with the worst ever flu

Friendships are the life-blood of life, and equally require maintenance.  It is worth remembering that there are friendships for different times, and for different purposes.  They don’t necessarily need to ‘get’ everything about us (including our health challenges) to be valuable, worthwhile – and cherished and nurtured.  It is worth remembering if you do feel a need to discuss your friendship to stay very focused on what outcome you want to achieve.  Try to also celebrate the good parts of your friendship when you do so, and take ownership of the discussion with those ‘I’ statements (e.g. I feel, I sense) which as so much less confrontational (and true!) that saying “you make me feel.”  Sometimes friendships do run their course, or become more unhelpful than helpful.  Generally we know in our hearts when this is, but clarity can come in many situations by asking ourselves “what would I advise a good friend to do in this situation?”

Remember too that the friendship that you have with yourself is one of the most important to maintain.  It will be life-long after all!  When I try to socialise my clients to the form of therapy that I practice, Cognitive-Behavioural Therapy, I find the most useful explanation is that it is a strategy to assist in being a good friend to yourself (we are surprisingly bad at this on the whole!).  I think that it speaks volumes that at a time when funding for healthcare worldwide is under extreme strain, that there is increasing all recognition that all manifestations of physical illness requires CBT support to maximise treatment effectiveness.  I would encourage everyone, but especially anyone with physical health issues, to become familiar with this paradigm either through one-to-one therapy or through reading.  We can get caught in all sorts of traps, such as feeling that if we are off work sick that when we do have moments of feeling better that we don’t really deserve to capitalise on that, or feel guilty (a very unhelpful emotion) if we do.  Or feel that our healthcare needs cause such an expense in time and finances that we can’t allow ourselves little treats.  Or worst of all that we need to beat ourselves into activity by reminding ourselves of our shortcomings and incapacities.  When we are suffering, tired, and struggling, we can get caught in unhelpful thinking patterns, and changing this, and our behaviours, can have such positive consequences for us, our health and our relationships. We all require good self-care skills, and we all need to be as good at remembering our skills and positive contributions as our slips.  Also we need to be aware that accepting help at times, and being thankful for it, is an important aspect of generosity.

I wish you all good health, happy, flourishing relationships, success with all your resolutions, and all good things for 2014!

 

Morwenna150Dr. Morwenna Opie isnd hasa registered Clinical Psychologist and accredited CBT practitioner, specialising in anxiety and mood disorders, and in supporting patients with chronic and acute medical issues. She has practised in both New Zealand and the UK, a been based for the last 7 years at the Nightingale Hospital in London, UK. She experienced a dramatic deterioration in her own health in 2011 following surgery for skin cancer, and has since been diagnosed with POTS and Sjögren’s Syndrome. She also juggles caring for two small children, a spaniel, a husband, and herself.

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