Changing stroke rehab and research worldwide now.Time is Brain! trillions and trillions of neurons that DIE each day because there are NO effective hyperacute therapies besides tPA(only 12% effective). I have 523 posts on hyperacute therapy, enough for researchers to spend decades proving them out. These are my personal ideas and blog on stroke rehabilitation and stroke research. Do not attempt any of these without checking with your medical provider. Unless you join me in agitating, when you need these therapies they won't be there.

What this blog is for:

My blog is not to help survivors recover, it is to have the 10 million yearly stroke survivors light fires underneath their doctors, stroke hospitals and stroke researchers to get stroke solved. 100% recovery. The stroke medical world is completely failing at that goal, they don't even have it as a goal. Shortly after getting out of the hospital and getting NO information on the process or protocols of stroke rehabilitation and recovery I started searching on the internet and found that no other survivor received useful information. This is an attempt to cover all stroke rehabilitation information that should be readily available to survivors so they can talk with informed knowledge to their medical staff. It lays out what needs to be done to get stroke survivors closer to 100% recovery. It's quite disgusting that this information is not available from every stroke association and doctors group.

Tuesday, April 3, 2018

Patient-reported outcomes: A new era in clinical research

What would be your patient reported outcome of your stroke rehab?  Disregard the priming/tyranny of low expectations from your doctors and therapists.

Mine would be as follows;

  1. Constant fatigue, only a half gallon of daily coffee allowed me to function in my high demand job and travel for that job.

  1. Spasticity; fingers still partially clenched, arm never hangs straight, leg does not swing freely when walking, foot angles outward when walking. 

  1. Sit to stand; Still have to push off with right hand, then have to stand still and stabilize before taking a step.

  1. Can't run.

  1. Can't cross country ski with both arms/hands.

  1. Can't swim; prevents me from taking up whitewater canoeing again.

  1. Can't bicycle.

  1. Can't jump any height at all. 

  1. Can't do pushups; hand will not flatten, arm collapses.  

  1. Can't shuffle cards for playing cribbage. 

  1. Can't go hunting anymore; inability to raise arm, wrist spasticity, finger spasticity.

  1. Can't do missionary style sex.

Patient-reported outcomes: A new era in clinical research

This article has been cited by other articles in PMC.

Abstract

Now-a-days there is significant discussion about patient-reported outcomes (PRO) in medical world. The following article covers almost all the areas of PRO including-their importance, important concepts for understanding of PRO, significance, ideal properties, types, development and evaluation of PRO instruments. It is useful for physicians, pharmacists and patients for the assessment and improvement of the therapy.
Patient reported outcomes, clinical research, PRO, quality of life

INTRODUCTION

‘Patient’ can be considered as the centre for any healthcare system. Now-a-days there is growing realization for the patient-centered healthcare system.[1] The outcomes of a clinical intervention obtained by the patient i.e. patient-reported outcomes (PROs) are seemed to be of more importance in future than any other outcomes like clinical, physiological or caregiver-reported. As per studies, enhanced treatment adherence and outcomes can be obtained by giving attention to patient feedback on healthcare outcomes and patient behavior change.[2]
As per US-FDA, a PRO is any report of the status of a patient's health condition that comes directly from the patient, without interpretation of the patient's response by a clinician or anyone else.[3]

IMPORTANCE OF PRO

Though medical technology allows to measure physical, physiological or biochemical data of the patient; it is not able to give all the data about the treatment or the disease. Some data can be obtained only from the patient. Such data includes the things as mentioned in [Table 1].[4]

Much more at link. 

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