Evaluating Protocols, Programs & Studies Aimed at Recovery & Rehabilitation

The reason for searching and reading the studies is to answer one question - - how might this work for to me (or my loved one)? There are a number of critical questions to ask about and know about if you are looking for help with your rehabilitation and recovery. There are questions about the people who have been in the study or used the protocol or attended the program that are critical to understanding whether you are like the people in the study/program. There are questions about the research protocol, the program or the study itself that you and your healing team need to have answered before you can answer that question.

 

Evaluating Programs and Research Studies - "Would it work for me?"

We've put together some questions to consider as you read the material, the articles, or talk with people in a program.
    •  How long has the program been in place, treating patients?
          — How many have they treated?
          — How many dropped out? Why?
    •  Some of the practical things:
          —Who's paying for this program or protocol?
          —What will you have to pay?
          —Do you have to travel to a specific place? Who pays for travel, housing & food?
          —What happens if you get sick or hurt during the program/protocol?
          —What will your insurance be expected to cover? Will they cover it?
          — Will your insurance cover injuries or does the program/protocol?
    •  How new is the study protocol? Have they tried it in smaller groups or has someone else tried it already?
    •  Have they published their results? Is anyone else trying their program or protocol? Do they get the same results?

   

About the people in the study, the research protocol or the program:

The challenge in evaluating the programs is what we don't know. We need to know the details about the people who are being studied or who have been through the program. We don't know if we are like them or very different. If we are different, we need to know how we are different so we can tell if that would affect how well the program/protocol would work for us.

    •  How long have the people in the program/protocol had OI? Did that make a difference in who got better?
          —Did they study that? Do they know?
    •  What kind of orthostatic condition do the other participants have? Do they have more than one kind?
    •  How severe is it - are they bed bound, have they been bed bound, are they exercising now?
    •  What else are the participants doing to manage the OI (e.g. fluids, salt, medications, head of the bed raised)?
          —Did they study that? Do they know?
    •  What other conditions do the participants have - CFS, Fibromyalgia, hypermobility, etc?
          —Did they study that? Do they know? Did they do better or worse?
    •  Do the participants have any physical challenges already - dislocations or hypermobility, nerve pain, contractures?
    •  How conditioned (or deconditioned) were they at the start?

 

   

Selecting people to participate in the research protocol or the program :

    •    Is the study/program about or for people with OI?
          —If the people could have OI (like ICU-stays), did they check the people to see if they had OI?
          —If it includes others, how does it accommodate or adjust for OI realities?.
          —Example - do they acknowledge and teach appropriate response to pain that is due to a physiologic problem.
                 Examples: a headache that comes with standing too long (and orthostatic symptoms) or shoulder pain when it is                  out of place or do they focus on "pushing through" or some other chronic pain management strategy?
                 Do they understand the difference? How do they handle it?
    •  Criteria to see if the person fits the program/protocol - Do they have any?
         -  Do they have criteria to know who it is better not to include in the program?
         -  How do those criteria apply to you?
         -  Do they know what level of function or ability a person needs to be at to complete the program/protocol and succeed?
         -  Or - do they take everyone, no matter what the history?
    •  What tests did they do to start?
    •  Did they find out the person's level of conditioning? Do they know your level function and ability?
    •  Do they promise that you can succeed or are ready for their program/protocol without any evaluation?
    •  What else do they require that you do to manage your orthostatic problem (e.g. fluids, salt, medications, head of the bed
       raised)? (What do they require that you stop?

 

   

What does the protocol or program involve:

What does a person have to do? You (or your healing team) need to know the details of the program:
    •  What did they have the person do?
          -  Were they lying down, sitting or standing? (Very very important question!
    •  What equipment did they use?
    •  How many minutes a day?
    •  How may days a week?
    •  When did they increase what they did?
    •  How did they know when the person was ready to increase?
    •  How long did the whole program last?
    •  What kind of follow-up is there afterward?

   

 

What do they measure at the end to tell if the protocol or program was successful?

    •  How do they measure better orthostatic tolerance?
    •  Do they measure exercise tolerance/ability?
    •  Do they measure returning to work or school or amount of regular daily activity?
    •  What do they use for you to report (before and after especially)
          -  pain,
          -  orthostatic intolerance,
          -  ability to do daily activities,
          -  level of fatigue,
          -  your opinion on your quality of life?
    •  Do they count returning to work/school as success even if you still are limited in tolerating exercise, doing social things
       or taking care of your self and your home?

 

This is the type of information your healing team would need to know. It helps understand what parts of the research protocol or the treatment program might work for you, whether it's a good fit for you, and what clues or answers still need to be found.

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Author's Note: We will try to point out the limits of the studies and programs and questions to ask for you to evaluate a program or study to see if it would work for you in your rehabilitation.

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