Testimonials on Clinical Practice Guidelines and Consumer Guides
Below are testimonials from clinical practice guidelines and consumer guide users. Please note that some wished to remain anonymous.
I am an Occupational Therapist and unit supervisor with the California Children Services program. We service patients from 0-21 years of age with varied physical and neurological deficits. I have had the opportunity to refer to and use the practice guidelines available through the Paralyzed Veterans of America on several occasions and have found them to be a very thorough and helpful resource for treatment recommendations, development and rationale. Most recently we have referred to the pressure sore section of the SCI guidelines to assist with obtaining a proper pressure relieving mattress for an 18 year old young with a SCI. The guidelines are a very well written, informative and helpful resource.
As an ATP, I have provided the practice guideline to other therapists working in various settings around the community to help them gain more knowledge in the area of SCI who are not as exposed to that population on a ongoing basis.
Also used it to help with lectures in other related topics to various audiences (students, other clinicians).
Valuable, valuable tool.
Thank you so much for all you do to support the people who have a SCI as well as those of us who care for them!
I am a nurse (for 30+ years). I am certified in rehab and case management, etc. and am currently doing Medicare set asides (basically a report projecting future medical costs based on medical records and appropriate evidence based treatment). I have used the SCI guidelines multiple times in my current job, and previously in case management. They are a great example of quality in the health care system, of which we obviously need more. The fact that they address issues regarding cost efficiency is especially appreciated. I only wish I had found them earlier in my career!!!!
I like the current information. It will be helpful in my practice and currently helps me to understand the needs of veterans and persons with similar situations. Currently I am an OT student and will begin clinical fieldworks soon. I tend to download some of your manuals for my own knowledge but will also refer the information to future clients. Thanks for such a wonderful and informative website.
My daughter was paralyzed as a young infant but her residual medical issues have left her with a diagnosis of quadriplegia. As a parent our job is to educate her, our family, our local medical staff, the school as well as the community. Your site has been able to provide us with invaluable information, most specifically but not limited to the publication on Autonomic Dysreflexia. We live in a small community so even our pediatrician felt this document was extremely useful for guiding us in her care. We have given it to the school, her aide, her child study team, teacher, therapists. We, as her parents have also benefited from it and we carry it in her backpack in case of an emergency as we learned that not all emergency staff knows what AD is.
I have downloaded both the clinician and consumer versions of the Upper Limb Preservation guide and talk about them frequently. I use them in teaching about appropriate set up of ultra light manual wheelchairs and placement of axels, propulsion patterns, transfer techniques, etc.
I am using it an easy to understand source of evidence to change the practice within the spinal cord injury program at the rehab hospital where I am starting an assistive technology program. I am very appreciative of the fact that they are available on line for me to direct others to read and use.
Excellent in quality of presentation and content.
I constantly use the Consortium’s CPGs and information booklets as a referral source when I teach staff, clients and careers. They are excellent resources. Couldn't do without them.
The CPGs are the best.
The availability of these guidelines on the internet is incredibly valuable for people over the entire world.
I can report that as recently as today I sent the respiratory guideline to colleagues in Paradigm Healthcare System about how our ventilator dependent patients should be weaned.
As an educator for the Zablocki VAMC SCI Unit for staff and patients, I personally learned by using both the CPG and the Consumer publications.
I provide the CPG publications for all newly hired nursing staff and exciting staff when questions arise
I have a weekly patient education session, in which I provide the Consumer editions to newly injured patients in our rehab program.
I would like to add my voice to those of others about the incredible value of the clinical guideline development process that the PVA has supported for SCI and MS. As a faculty member in physical therapy, we have our students use many of the guidelines directly as they learn about SCI and MS - and make them aware of those that have applicability to their patients but may not be a direct PT focus.
Over the years we've been strong advocates to get copies of the guidelines in our students' hands, at first when they were available to educational programs for the asking - and now as pdf versions.
I hope that the PVA will continue to offer strong support for this type of interdisciplinary collaboration in the future - the guidelines have really changed how therapists practice in many ways - and dramatically changed the ways that we teach students about how to care for their patients.
As a Trauma ICU RN, I see the devastation that a spinal cord injury can wreak on patients and families. I regularly get asked by families for more information. After an exhaustive search on the internet for reputable sites, I found the Paralyzed Veterans of America and that the information there was concise, correct and in laymen’s terms. I have shared the site with every SCI patient I encounter and share with them the SCI level specific booklets to help them on their new path with their loved one. Thank you for this invaluable resource.
We use the guidelines religiously and have used them to train some of the other medical professionals on our hospital staff. Great job, very well done and well respected. We have 3 sets. One for our office, one for my hospital office and one for the emergency department.
I love the guides that I’ve received in the past. I’ve used the information on autonomic dysreflexia, the manual “An Introduction to Spinal Cord Injury, Understanding Changes” along with “Preservation of Upper Limb Function: What You Should Know”. I think the information you provide in these manuals is very educational and presented in a great general format for the new patient along with the veteran who may need an upgrade on the information they received many years ago. The pictures are clear and helpful especially with regard to stretches. I always try to pass along your website as a resource to my patients.
I look forward to being able to utilize more of your consumer guides and information in the future!
I have mentioned your publications in every forum that addresses the need to establish a research/scientific basis (medical evidence) for the diagnosis and management of persons with SCI. I cite many of the specific guidelines and your effort as marking the major advances in rehabilitation in the past 20 years.
I am involved with teaching PM&R residents how to manage SCI patients in our residency program, and I use them as the core teaching tool and as a starting point for the residents as they treat and rehabilitate individuals with SCI.
We have given this information out in a number of ways:
Intranet site: I put screenshots of the intranet site below. They have a description of the CPGs and the consumer guidelines.
Internet site: Our internet site (available to Veterans) does not list the consumer guides directly but we do link to the PVA site, where they can be downloaded.
MyHealtheVet: Not up yet but soon, the MyHealtheVet site will feature links to the Consumer Guides
Newsletter: we have had articles on CPGs and Consumer Guides whenever a new one comes out and we also include instructions to get to the others.
CD-ROMs: We pass these out at conferences and they occasionally get passed to providers who give them to patients. These are somewhat out of date because they don’t have the most recent CPGs and Consumer Guides on them but they are still very useful.
Presentations: We ask presenters to include a mention of the relevant CPG when they give a presentation on a topic. For instance, Kathy’s recent Primary Care Team training broadcast gave explicit instructions for people to download and print copies of the CPGs.
Printed Copies: The PVA has gotten away from producing printed copies so we’ve mostly run out of them but up until fairly recently, we did pass out printed copies of CPGs at conferences.
I have found the guidelines to be very useful for writing policies and also for referencing best practice/research interventions.
We use the Yes, You Can! book for all SCI patients as an educational resource as well as the AD cards. Thanks for all your resources for our patients!
I am the SCI program coordinator at a University Hospital and use the publications to help educate patients, their family and the staff of our facility. I truly believe that they are worth while.
I've worked with MS patients for 10 years-they are superb!
Before I retired from the Palo Alto VA SCI Service we used the Guidelines in many ways and I am sure they still are. The Guidelines were invaluable for new staff, students and residents as teaching tools. We sent the CPGs and Consumer Guides to all Hub and Spoke site staff. All new patients received the consumer guides in their educational packets. The Guidelines were made available to "SCI Boot Camp" participants at the annual AASCIN meeting last year. Patients were provided appropriate consumer guides when they presented with specific problems; ie. AD, bowel problems, pressure ulcers, etc. Hospital staff on other units were provided with Guidelines when they had a SCI patient their unit (such as Intensive Care Unit). Emergency Room staff provided with teaching tools, particularly re. AD. The Guidelines are cited and followed when giving educational presentations. Staff and patients are also provided information regarding how to download from the PVA website.
I use the guidelines regularly in a variety of ways including: