PACO

Past Letters from the Director

Dr. Shadick - small

July 2013

 

I would like to report to you on the exciting work taking place within the Brigham & Women’s Hospital Arthritis Center Patient Advisory Committee. The committee met in December and the majority of time was spent talking about a new patient-doctor communication project. PAC members were asked to think of ways they would like to be able to communicate with their doctor. Their suggestions were then presented to Dr. Helfgott, who is in charge of the fellowship program in the rheumatology department. At the next PAC meeting, members will sit down with the fellows and talk about their suggestions in person.  We were all very excited about this new project!

Additionally, we are continuing to provide RA patients with ongoing educational seminars on topics of interest. A seminar will be presented by Dr. Yvonne Lee on September 4th, 2013 at 6 PM. The seminar is titled “Miles to Go Before I Sleep: Sleep Problems in RA”. Dr. Lee will talk about her current research on this topic and will also discuss her future plans on an intervention study to see if normalizing the sleep cycle can improve RA patients’ quality of life.

We are also rolling out a new study within the next couple weeks, called the Health Log, to see if patient-doctor communication can be improved during visits with a rheumatologist. The Health Log consists of a permanent booklet and a refillable component that can be filled out before each doctor’s appointment. The permanent portion contains information about medications, surgeries, and health history and the refillable portion includes questions about health status, pain, fatigue, as well as space to write goals and questions for the doctor’s visit and the prescription refills needed. By planning for the doctor’s visit ahead of time and writing down questions or concerns, we hope that these issues are not forgotten about in the moment. The Health Log puts information from the patient into a format that can be easily and quickly understood by the rheumatologist.

Our monthly support group continues and is held the second Wednesday of every month from 12:15 pm – 1:15 pm at One Brigham Circle, 4th Floor, Room BC-009. This group is open to anyone with rheumatoid or psoriatic arthritis and is open to new members each month, there is no commitment necessary. Previous topics of discussion have included how to deal with holiday stress and relaxation techniques. For more information, please contact our current PACO Study Coordinator Hannah Tadley at 617-525-6608 or [email protected].

 

Regards,

 

Dr. Nancy A Shadick



 NShadicksmallJanuary 2011

 

We would like to welcome our new PARASS Study Coordinator, Rebecca Thrower. She graduated from Tufts University where she double majored in Chemistry and Community Health. Rebecca is very interested in healthcare and especially patient-centered care. She is excited to work with us on this project.

The Patient Advisory Committee met in October and heard from Molly Gray LCSW, a social worker at Brigham and Women’s Hospital, who spoke about what resources the department of social work can provide for patients. We also discussed possible topics for the next seminar such as acupuncture, hypnosis, or vitamins and herbal supplements.

A seminar on Rheumatoid Arthritis: Today and Tomorrow was held at Brigham and Women’s Hospital in May. Jonathan Coblyn MD, the director of the Arthritis Clinic spoke about advances in RA treatment. Cheryl McDermott, the Arthritis Foundation Exercise Program Leader, also spoke about exercises that everyone can do. The attendees found the program very helpful.

The Living Well with Rheumatoid Arthritis program was presented at the annual Internal Family Systems Conference held in Chicago in October. The program was well-received by everyone who attended.

Our monthly support group is now facilitated by the Rheumatology nurses, Frances Griffin RN, BSN and Pat Green RN, MS. The support group is held the second Wednesday of every month from 12:15 pm – 1:15 pm at One Brigham Circle, 4th Floor, Room BC-009. This group is open to anyone with rheumatoid or psoriatic arthritis and is open to new members each month, there is no commitment necessary. Previous topics of discussion have included how to deal with holiday stress and relaxation techniques. For more information, please contact Rebecca Thrower at 617-525-6608 or [email protected]

 

Regards,

 

Dr. Nancy A Shadick

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November 2009

Since my last letter, we have analyzed results from the “Living Well with RA” emotional health program and found that RA patients in the program had significant improvement in disease activity and physical function within 3 months. Individuals with prior depression benefited psychologically as well. The “Living Well with RA” program helps patients increase self-awareness, reflect on their coping styles leading to more efficient and effective coping strategies and then apply their new skills to the management of their disease. Seventy-eight patients enrolled with thirty-eight in the treatment group and forty serving as controls to receive the program later. Patients showed significant improvement in tender and swollen joint counts, physical function, less pain and fatigue, and those with a history of depression, had greater ability to cope with feelings of anxiety and depression.

On our list of events, is a seminar titled “How to Improve your Sleep – A session for RA and Lupus Patients” on October 29, 2009. Dr. Atul Malhotra, a Pulmonary and Critical Care Physician who specializes in Sleep Medicine along with members of his team, will talk and answer patients questions about sleep. Dr. Malhotra is the Clinical Chief of the Sleep Medicine Division, an Associate Professor of Medicine at Harvard Medical School and serves as the Medical Director of the Sleep Disorders Research Program which is a team of about 50 people. Dr. Halhotra and Professor Charles Czeisler are the co-directors of one of only two Academic Sleep Programs of Distinction in the Country. Some of the topics patients have requested Dr. Malhotra address are: How to improve the quality of sleep when dealing with pain and medications; information about prescription and non-prescription sleep aids; how to stay asleep and if waking, how to return to sleep; advice on how to get the best night’s sleep, tips on relaxation and breathing.

Our Patient Advisory Committee met in May and will be meeting again in November. The May meeting focused on how to make the patient’s visit to the clinic as efficient as possible. Kori Bernadino, the Arthritis Center Practice Manager who oversees the Center facility, joined us to talk about the hospital-wide initiative to improve the patient’s visit and minimize wait time. The committee listened and gave Ms. Bernadino suggestions such as letting patients know the best times to schedule appointments, when a doctor is behind schedule, and an estimate of just how far a doctor is behind schedule when patient checks in. Ms. Bernadino said wait times vary across the hospitals so the initiative is crafting a policy where each department improves communication with their patients.

We are continuing our monthly RA support group on the second Wednesday of every month. Nancy Sowell, LICSW, the social worker who runs the “Living Well with RA” program, facilitates the support group for those with psoriatic or rheumatoid arthritis. Nancy says, “The group is centered around topics generated by patients such as what it is like to live with RA and the impact on work and family.” It is open to new members and does not require a commitment to attend every month.” Please contact Nancy Sowell for more information ([email protected] or 617 732 8788)

Regards,

Dr. Nancy A Shadick


May 2009

Already this year we have had two well attended PACO seminars. On January 8th Marie-Jose Benjamin, an occupational therapist at the Brigham and Women’s Hospital, presented and demonstrated adaptive devices that would make activities easier, reduce stress, and simplify tasks around the home – from kitchen utensils to dressing aides – to a crowd of over 40 patients, family members, and friends. At the end of the session, attendees got a chance to try the different devices and take home a catalogue. On March 25th Leslie H. Worris, MPH, gave the second PACO sponsored seminar of the year, “Therapeutic Yoga for those with Arthritis”. Leslie taught the audience about the mind/body balance, and she actively engaged everyone in a shortened yoga session, doing all the poses while seated in a chair. Numerous audience members commented on how relaxed they felt and how terrific Leslie was at adapting yoga to those with various degrees of arthritis severity. The Patient Advisory Committee met on February 26th and received professionally designed copies of our soon to be distributed Health Log. Starting in May, it will be distributed to a subset of BRASS patients so that we can evaluate its use and effectiveness. It is a great resource for organizing medications and preparing questions prior to your next appointment in order to maximize your time with your rheumatologist. An easy to use electronic version of the Health Log is already available for download. Just click on this link. Members listened to a brief summary of what we are learning through interviews with rheumatologists and fellows about how to improve the clinic visit. Members also contributed suggestions on what our next seminar speaker, Dr. Ioli a Brigham podiatrist, might talk about on May 27th. Among the topics suggested were “What to do when your feet aren’t feeling great” or “Where to buy ortho/specialized shoes or dressy shoes.” We are excited about our new RA support group that has started the second Wednesday of every month! Nancy Sowell, LICSW, the social worker who runs the “Living Well with RA” program, facilitates the support group for those with psoriatic or rheumatoid arthritis. Nancy says, “The group is centered around topics generated by patients such as what it is like to live with RA and the impact on work and family.” It is open to new members and does not require a commitment to attend every month.” Please contact Nancy Sowell for more information ([email protected] or 617 732 8788)

Regards,

 

Dr. Nancy A Shadick


December 2008

This letter provides highlights of our progress over the past two quarters. We are excited that our Health Log has been piloted and is now at the printers being professionally designed. The idea for the Health Log started as a request from patients to have a better way to track physical and psychological health between visits and to better communicate with their rheumatologist. The Patient Advisory Committee helped us design a first template which was then piloted with 26 patients in the clinic. Patients commented, the Health Log is “Helpful for organization and easy way to track daily disease progression.”  “Great for someone newly diagnosed.” To take advantage of the availability of Internet, we developed an electronic version, the eHealthLog, which is accessible from anywhere, easier to type, and can be stored on the patient’s computer as a record of concerns. We are now in the process of piloting the eHealthlog.      Click here to learn more about the Health Log.

In 2008, we hosted three seminars on topics suggested by patients – 1) “Drawing on your Inner Resources” presented by our licensed clinical social worker which served as an introduction to our new self-management program; 2) “Diet and Nutrition in Rheumatic Diseases” presented by Dr. Ronenn Roubenoffis featured as a podcast on our website; and 3) “Living with Rheumatic Disease – a patient perspective” given by Janet Austin, Director of Office of Communications and Public Liaison at NIAMS. Looking forward to 2009, our schedule includes – January 09 “Adaptive devices and Ideas for arthritis – making tasks easier around your home and at work,” March 09 “Therapeutic Yoga session for RA with patient participation,” and June 09 “All you ever wanted to know about your feet” with a Brigham and Women’s podiatrist. Click here to learn more about our seminars.

Well underway is our Living Well with Rheumatoid Arthritis  program to help RA patients live better with their disease. Patients involved in the program attend individual meetings with a consultant and group meetings with 8-10 RA patients to learn techniques that help decrease negative thoughts, emotional distress, and physical tension. The program can help reduce symptoms of depression and anxiety that frequently accompany RA with the goal that over time patients will reduce the severity of their pain and find ways to improve daily living.  Click here to learn more.

We hope that you not only have an opportunity to read about the innovative services, ideas and people involved in PACO but that you also get a chance to participate.

Regards,

Dr. Nancy A Shadick


June 2008

It has been an exciting winter and spring for the Patient-Centered Outcomes Initiative. In January our Bristol-Myers Squibb Foundation Director Patricia Doykos met with the Patient Advisory Committee. She emphasized the importance of PACO’s efforts, particularly the tools and supports to help patients and rheumatologists work together to help meet the challenges of living with RA and to better communicate what goes on outside the clinic visit. One of the tools to help patients communicate with their rheumatologists is the Health Log, a carry along log used to track disease activity in between clinic visits. One patient commented, “I just hand the Health Log to the nurse, and she copies down my meds and other information and hands it back. It cuts down on the time doing these things.” Right now, 26 patients are piloting the log which will be available to all patients in the Arthritis Center in the future. Another item developed under PACO is a comprehensive list of resources available both at the Brigham and at other organizations that provide services to RA patients. Watch for this to be distributed soon in the Arthritis Center. In May, the Patient Advisory Committee members met with the VP of Clinical Services at the hospital to talk about the clinic registration process and other aspects of the hospital visit from an RA patient’s point of view. Several patients had commented about the difficulties of going through registration because they have to sit and stand multiple times, movements that are hard for RA patients. I am pleased to say that at the time of this writing changes are in the works to streamline the registration process. Thanks to the Patient Advisory Committee for their advocacy in helping the hospital stay attuned to patient needs. Lastly, on June 5, noted rheumatologist, researcher, and author Dr. Ronenn Roubenoff gave an engaging and interactive presentation on nutrition as it relates to arthritis and other rheumatic diseases. With over fifty people in attendance, we learned about the importance of exercise to off set the decline in muscle mass caused by autoimmune disease. Now looking towards the coming year, our seminar series, “Living Well with RA” will host Janet Austin from the National Institute of Health on October 16th who will present on patient advocacy.

Regards,

Dr. Nancy A. Shadick


 February 2008

The start of the New Year is a time to reflect on PACO’s accomplishments for 2007 and where we are headed in 2008. In 2007, the Patient Advisory Committee was formed and met three times. Their input and thoughtful comments about the new Health Log, PACO seminars, and PACO’s plans for a new RA self management program have been invaluable. Additionally, PACO sponsored two well-attended seminars, one in June “A discussion of Major Drug Therapies” by Dr. Michael Weinblatt and another in December “Exercise, Physical Fitness, and Moving Better with RA.” by Dr. Dan Rooks. The BWH Osher Center for Complementary and Integrative Medical Therapies is collaborating with us by providing three patients with the opportunity to use their integrated services and then report back on their experience. In 2008, PACO is initiating a new arthritis self management program to help patients draw on their inner resources to cope with their disease. We are fortunate to have Nancy Sowell, a clinical social worker and teaching associate at Harvard Medical School formerly from the Behavioral Medicine Program at Cambridge Hospital, join the team. She has worked extensively with patients who have chronic illness. At the January 24, 2008 PAC meeting Nancy Sowell told members, “Everything that we hear, everything we think, everything going on in our mind, is registering in our bodies. Our emotional state influences our blood pressure, heart rate, skin conductivity, and muscle tension”. This program will help RA patients learn how to tap into a center of calm and connectedness that we all have inside.” The program Ms Nancy Sowell will pilot draws on many elements including mindfulness ( the work of University of Massachusetts researcher Dr. Jon Kabit-Zinn) and Internal Family Systems Theory ( the work of Dr Richard Schwartz, psychologist from Northwestern University). If you would like to learn more about this work, come hear Ms Nancy Sowell’s talk “Drawing on your Inner Resources, a Positive Approach to managing RA.” at the next PACO seminar on March 12th at 5:30. I hope that you will have the opportunity to attend the upcoming seminar and learn more about our new program. Please feel free to approach the doctors or the nurses in the BWH Arthritis if you have any questions or send us an email by clicking here.

Regards,

Dr. Nancy A. Shadick


December 2007

Welcome to the new PACO Initiative website! The website is a place where you can learn about the PACO study and its goals and activities and where we can keep you up to date on our progress. With the generous funding of the Bristol-Myers Squibb Foundation, we hope to create a replicable model of patient-centered care for Rheumatoid Arthritis patients. Areas of emphasis include identifying patients’ concerns living with RA, improving patient-doctor communication, and facilitating self-management. Studies have shown that patients whose physicians routinely engage patients in their care and decisions have better functional status and lower glycosylated hemoglobin (a blood marker for diabetes management), blood pressure and arthritis severity than patients of physicians who were less likely to include patients in their care. Each month we will keep you up to date on our programs, including the line-up of speakers in our “Living Well with RA” workshop series, collaborations with the BWH’ Osher Center for Complementary and Integrative Medicine Center, and handy tools for patients and doctors to facilitate communication. With the support of all the Brigham and Women’s Hospital rheumatologists and patients, in particular my colleagues Drs Jon Coblyn and Michael Weinblatt, we look forward to creating a model of patient-centered care that will improve the lives of individuals suffering from Rheumatoid Arthritis.

Regards,

Dr. Nancy A. Shadick

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