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.
- Nivin Joseph, OTR/L, Unit Supervisor, Fontana MTU

I have used them over the years and thought how wonderful they are.  As a service officer for 23 years, I have given them to everyone from here to eternity.  Hospitals, rehabs, individuals all beg for them.  One year I was invited to bring my books and catalog order forms to MidAmerica Rehab.  They had some sort of Nursing Seminar.  The main speaker was a doctor from Barnes Hospital in St. Louis.  I was so surprised when she mentioned how wonderful PVA has been and how valuable our research books are.  I gave out every one of my order forms.  My secretary and I have set up outreach booths all over the place with these books as a focus point.  I think they are a great asset for PVA.
-  Bonnie Hilburn, Kansas City, Senior National Service Officer, PVA

I require my students to download or order the clinical practice guidelines as part of my Advanced Spinal Cord Injury Management elective in the Doctor of Physical Therapy Program at the University of Central Arkansas.  They then take them with them to their internships and have had good responses from clinicians that may not be aware of them or may not have the latest clinical guideline etc. I plan to continue requiring these in the future.
- Twala H. Maresh, PT, DPT, Department of Physical Therapy, University of Central Arkansas

On the clinician side, at times I used it [clinical practice guideline] as a reference to either guide my decision making and goal setting or to confirm my ideas for setting obtainable goals dependent upon length of stay, hours of treatment, etc... on the inpatient rehab side.

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.
- Gabriel Gomez, J&R Medical

I am on my way to the American Academy of Nurse Practitioner’s Annual Conference where over 4000 Nurse Practitioners will be attending.  I will be presenting a poster on Primary Care of the Spinal Cord Injured Patient - a primer for Nurse Practitioners.  I cited the Consortium's CPGs as the key reference.  I will share and encourage the CPGs and educational guides as a great reference/resource for both practitioners and patient alike.
- Terry McManus FNP, Family Nurse Practitioner -Spinal Cord Injured - Member of PVA, Lt Col USAF (Ret)

I have found the information very helpful in trying to ensure our injured workers, who have sustained spinal cord injuries, receive the best possible care to meet all their needs.  I have also referred the PVA website to other individuals and home care agencies to provide a reference source.
The information provided is informative and up-to-date.  It's also easy to read and understand which is great for people from all backgrounds.
- Clinical Specialist, Nursing, WorkSafeBC

Publications have been great for assistance with patient education. In the SCI OPC in Miami, we utilize all the publications but especially the Neurogenic Bowel.  We are looking forward to a consumer guide publication on Neurogenic Bladder.
- Vivette Grange RN, SCI OPC, Miami

I use them [guidelines] in a unit based orientation for new employees on an inpatient rehab unit. I want them to know that there is a standard of care written by the experts in SCI care.
- Reatha Collinsworth, RNC, MS, CNS, Dept of Veterans Affairs Medical Center

I am a rehab CNS and I, along with others on our rehab unit, are very pleased with all of your publications. We purchase copies of your Yes, You Can! books and give out to all our SCI patients. I also have pulled on your site, copies of the specific functional levels outcomes when I want to start a patient on some basic information before they get to the rehab unit. I have used your guidelines for answering questions I may have and also when looking for evidence-based information.

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!
- Judi Behm, RN, MSN, CRRN, Clinical Nurse Specialist -Rehab / Clinical Educator, The Drake Center

I had a veteran ask me about the bowel care routine, comparing the program we have to another facility. I was able to pull out the bowel care CPG - Neurogenic Bowel Management in Adults with Spinal Cord Injury - and review with him the standard of care that has been established by the experts. This was very helpful for the veteran and a great training tool. He was able to see the information gathered by the group and understand that bowel care is a very individualized program that must be developed for each person.
- Marsha Kameron, OTR/ATP, SCI Rehab Supervisor, Charlie Norwood VA Medical Center


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!!!!
- Medicare Set Aside Consultant, Certified, Certified Life Care Planner

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.
- Sherrie Payne

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.
Thank you so much, you literally provide life saving information.
- Mary Anne Egan

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.
- Mary Ellen Buning, PhD, OTR/L, ATP, Assistive Technology Resource Center, Frazier Rehab & Neuroscience Institute

Excellent in quality of presentation and content.
- Sigmund Hough, Harvard University
I am a physiatrist who deals principally with SCI and find the guidelines very useful in my practice and as a resource for our residents. I encourage your ongoing support for this process.
- John Guthrie

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.
- Clinical Nurse Consultant, North Queensland Spinal Service

The CPGs are the best.

The availability of these guidelines on the internet is incredibly valuable for people over the entire world.
- Lawrence Vogel, MD, Professor of Pediatrics, Rush Medical College, Assistant Chief of Staff, Medicine, Chief of Pediatrics, Shriners Hospitals for Children, Chicago

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.
- Kenneth Parsons, MD

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.
- SCI Unit Educator, ZVAMC, Milwaukee

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.
- Karen McCulloch, PT, PhD, NCS, University of North Carolina at Chapel Hill

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.
- Angela Mann, RN, CCRN, Lakeland, Florida
As one of the SCI-Nurse moderators on the http://www.carecure.org/ website for people with SCI, I find both the professional CPGs and consumer booklets invaluable. The SCI-Nurses often get questions about issues such as bowel management, autonomic dysreflexia, or pressure ulcer care from our members. Families of newly injured people with SCI post questions about ventilator weaning or what to expect in the first few days after injury. Many of these people are not in the USA. Many have providers who are not well versed in SCI care. It is invaluable to be able to post a link to these documents, encourage consumers to download the professional CPGs and share with their providers, or to read and use the consumer versions themselves. These publications have international impact on the daily lives and health of people with SCI from around the world.
- Kathleen L. Dunn, MS, RN, CRRN-A, CNS, Clinical Nurse Specialist & Rehabilitation Case Manager, Spinal Cord Injury Center, VA San Diego Healthcare System

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.
- James C. Frick, MS, PA-C, DFAAPA, Neuromuscular & Rehabilitation Associates of Northern Michigan

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!
- Laura Wodarski, OTR/L, RIC Homewood DayRehab

Recently my two colleagues and I reviewed and updated our successful booklet 'solving common bowel problems'- a resource for persons with spinal cord injury. The booklet was initially produced in 2003 and a new print run had been requested ..hence the review.  I needed to view other bowel management resources in ‘consumer’ language, to ensure we were on the right track. From the consortium website I printed off your consumer guide (March 1999) and the professional guidelines for bowel management.  Using your guides and guidelines we incorporated into our updated version gas/bloating and information of fibre within foods. We have acknowledged PVA as the source.
- Wendy Jannings. CNC Spinal Injuries, Northern Sydney Home Nursing Service, Royal North Shore Hospital, Australia

Our patient’s and families love the Autonomic Dysreflexia Cards.  They go quite quickly.  Please send us as many as you can.
-Barbara R. Hughes, Cincinnati, VA Spinal Cord Injury Clinic 

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.
- John F. Ditunno, Jr., MD, Professor of Rehabilitation Medicine, Jefferson Medical College, Thomas Jefferson University

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.
- Thomas S. Kiser, MD, MPH, Dept of PM&R, University of Arkansas for Medical Sciences

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.
- Hammond and Erik Wallon, VA, Seattle

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!
- Carolyn A. Sorensen RN, MSN, CRRN, WOCN, Nurse Educator, National Rehabilitation Hospital

GFStrong Rehab Center in the PT department, we find the guidelines extremely useful and refer to them frequently. We particularly like the new SCI consumer guide for the Upper Extremity. Having the guides available on line is a wonderful resource - thank you making this type of resource so accessible.
- Sarah Rowe, GFStrong Rehab Center

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.
- Joan K. McMahon, MSA, BSN, CRRN, University of Kansas Hospital

I've worked with MS patients for 10 years-they are superb!
-Amy Brown

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.
- Linda Love

I use the guidelines regularly in a variety of ways including:
• Undergraduate medical education
• Undergraduate and postgraduate allied health education
• Postgraduate residency training in PMR, neurology, psychiatry and orthopedic surgery specifically
• General postgraduate training for specific patients eg to help an internal medicine service review autonomic dysreflexia
• Continuing professional development for physicians most commonly sharing specific guidelines with relevant specialists eg. the acute care guidelines were shared with neurosurgery, trauma team, critical care and intensivists.
• Sharing with regional primary care physicians when they are working with a patient with a new SCI patient specific guidelines are shared with patients and families. More commonly I am now directing patients to the website rather than giving them a printed copy.
- Dr. Karen M Smith, Associate Professor, Department of Physical Medicine and Rehabilitation, Queen's University, Providence Care

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