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Scoliosis Research Society
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Those Darned Questionnaires!

“Why do I have to fill out these questionnaires so often when I have an appointment?”

I’m sure many of you have asked yourself that very question.  What you may not know is that the answers that you give help give your doctor and his/her team a good idea of how you, and other patients as a whole, are doing after surgery.

Spine surgeons are very often involved in studies to evaluate the results of various forms of treatment for certain spine conditions.  They may have an idea that certain treatments are beneficial but it has to be ‘proven’ to themselves and the rest of the spine community.  Surgeons get together at different meetings throughout the year and present results of these studies to their colleagues.  Sometimes studies are done at a single institution with surgeons looking at just their own patients and a certain surgical treatment.  Other times, there are multi-center studies conducted that involve patients with a certain diagnosis and a particular surgery done by surgeons in different parts of the country and the world.  Many different things are evaluated as part of a study:

  • looking at your x-rays before and after surgery to see if your spine is in a good position
  • looking at your pulmonary function tests (if applicable) before and after surgery to see if your lung function has improved if your thoracic spine was straightened
  • looking at complications that occurred and if additional treatment was needed
  • looking at the patient reported outcomes (PROs) before and after surgery to compare the scores

The PROs are those darned questionnaires!  That is where YOU come in!  Patients play a big role in helping to determine future treatments.  The scores of the different questionnaire components are used to assess how patients are doing regarding their function (day to day activities), their pain level (or hopefully improvement in/lack of), how they feel they look, how they feel about themselves, and if they are satisfied as the result of their treatment.  Preoperative and postoperative scores are compared…long-term follow-up is even better so we can see how patients are doing at 10, 20, 30 (or more!) years after surgery. For the first few years postoperative, you see your surgeon more but as you get further out from surgery your appointments will be spread out to every 5 to 10 years…and so will the questionnaires.

Here are some findings of what a few studies have shown based on the PROs that may interest you:

  • Mental health scores, not curve size, can predict self-image scores.
  • Back pain in adolescent idiopathic scoliosis is related to age and most improve after surgery.
  • Overall scores were significantly worse in patients with untreated Scheuermann’s Kyphosis
  • Even if they had a complication from their surgery and had to have additional treatment, most patients are satisfied and would have the surgery again.

It’s important for you to keep following up with your surgeon and completing the PROs. After the first couple years, some patients only return if they are having problems.  Just as important is to return to show the surgical team how well you are doing and to monitor how things look “on the inside”.  Be sure the answers are YOUR answers, not your parents or someone else trying to ‘help’ get through your appointment quickly.  And please consider each question and answer it thoughtfully…if you randomly check answers just to get it done, you may have an effect on the results of a study without meaning to! In addition to being used in larger studies, a patient's PROs are specific to their own care and can help a surgeon determine how they are doing after a specific procedure, how they compare to other patients and what, if any, other treatments may be beneficial in that patient’s care.

YOU are a very important part of the team and play a big role in not only helping  guide your own care to maximize your benefits from surgery, but also in determining treatments for future spine patients, so thank you!