Multi-Disciplinary Care in Parkinson's: HP SIG Leadership Meeting

Transcription

1 P SIG Leadership Meetings, by Discussion Topic > Multi-Disciplinary... of 7 10/17/2016 9:52 AM HP SIG Leadership Meetings, by Discussion Topic International Parkinson and Movement Disorder Society Multi-Disciplinary Care in Parkinson's: HP SIG Leadership Meeting From: Samantha Surillo Date: Mon, 10 Oct 2016 at 9:26am Category: Meetings via Basecamp PLEASE FEEL WELCOME TO PROVIDE SUGGESTIONS & FEEDBACK. AIM OF THE MEETING: A focused discussion surrounding Multi-disciplinary care. Please provide feedback on the following items: Multi-Disciplinary care in Parkinson s. What Models of Multi or interdisciplinary care are there? How do people access specialist teams? - Social models of care (Free service E.g. via a National Health Service) or privately funded. Do all people have access to a specialist movement disorder team? Are there regional differences as to who is in the MDT? - What disciplines are in the teams? How do people find a skilled team and how could we increase the ability of people to access skilled health care professionals (would tools like be useful if they extended to HCP s)? ADDITIONALLY: Please provide some ideas or themes to explore regarding Young onset PD which may be used as framework for a base camp meeting in mid-november. Please contribute your thoughts to the agenda items starting now through end-of-day October 12. As done previously, please utilize the meeting as an ongoing discussion or just a platform to share your feedback and ideas. Elaine Book Mon, 10 Oct at 6:36pm In my experience there are many models of multi and interdisciplinary care in PD, much depending on the allied health and specialist care (ie neuropsych) available as well as the ways in which the team members work together (simply consultative vs team care planning with goal setting and follow up). In British Columbia (and most of Canada I believe) specialized MD teams are publicly funded. This care is available to all people in BC but depending on the location in the province, access for some is challenging or prohibitive. The other challenge that impacts access is long waitlists and generally only annual appointments. Most patients have access to allied health professionals during the years but only yearly appointments with the neurologist. The disciplines in the teams tend not to be determined by region as much as by funding sources with RN and PT often funded first followed by SW. SLP and OT are often outsourced to community resources. Increasing awareness of the value of having allied health professionals on the patient's team is a place to start and tools like the partnersinparkinsons would be great! With regards to YOPD, ideas to consider might include the special needs of the partners of people with YOPD as well as the needs of the children, teens and young adults in these families. Look forward to hearing from others,

2 2 of 7 10/17/2016 9:52 AM Elaine Gila Bronner Tue, 11 Oct at 4:30am via Dear HP SIG Leaders Since I m away fm my office I respond to Samantha, and ask her to forward my mail to everyone. As a specialist (sex therapist) I communicate with other HPs and physicians in the staff in 2 levels: 1. They call me when a patients seems to need sexual advice. I give phone counseling, which is often enough. 2. The problem is more complicated and demands my personal professional intervention. In our 2 multidiciplinary centers the Tel-Aviv medical center and the Sheba medical center, we have most of the specialists as part of the team. All are available for the 2 am mentioned options phone ciunseling and personal treatment. In staff meetings we can raise complicated cases With best regards Gila Bronner Siok-Bee Tan Wed, 12 Oct at 2:44am Dear HP SIG Leaders, What Models of Multi or interdisciplinary care are there? - In Singapore, we are still practicing multidisciplinary care. Movement disorder neurologists will usually see patients with Parkinson in the clinics with nurse specialists, and allied health (physiotherapists). Referrals will be made to appropriate allied health or social workers. We are planning to start a one stop service centre. How do people access specialist teams? - Social models of care (Free service E.g. via a National Health Service) or privately funded. There are private and restructured (not private or government) centres. Patients who are not able to afford health care, receives government subsidies Do all people have access to a specialist movement disorder team? Most people with Parkinson have access to movement disorder team. Minorities who are under follow up with geriatricians or other specialists Are there regional differences as to who is in the MDT? - What disciplines are in the teams? - private hospitals may not have MDT. Restructures hospitals have most disciplines - Neurologists, Advanced Practice Nurse, Specialist nurse, physiotherapist, Occupational therapist, speech therapists, psychologist, social workers, pharmacists How do people find a skilled team and how could we increase the ability of people to access skilled health care professionals (would tools like be useful if they extended to HCP s)? - it's an advantage for everyone to have a common platform to access Parkinson info too. Private specialists may not have MDT to support their patients, thus it will be useful info for them. For the Young onset, in addition, will be good to explore the psychosocial needs, and how to strengthen their coping. Parkinson is a long journey, thus creating a friendly atmosphere with mutual trusts between providers and receivers can lead to optimal care. Thanks! Siok-Bee

3 P SIG Leadership Meetings, by Discussion Topic > Multi-Disciplinary... of 7 10/17/2016 9:52 AM Mariella Graziano Wed, 12 Oct at 5:39am What Models of Multi or interdisciplinary care are there? As it has been said, there are different models of Multi or interdisciplinary care teams according to regions, health care systems and expertise available. I would like to expand on the latter, as some places may consider themselves MDT with specific knowledge in PD but perhaps the full expertise is not developed or updated to the standard required. This highlights the need of raising awareness on continuous training and issuing bases guidelines of requirements. The MDS would be a good platform to develop this issue. How do people access specialist teams? - Social models of care (Free service E.g. via a National Health Service) or privately funded. People access specialist teams more and more via internet. Here again raises the issue if people consult a reliable source. However National health insurance or private insurances may point people to the correct source. Do all people have access to a specialist movement disorder team? Not all people have access to a specialist movement disorder team. However telemedicine may solve this problem in the near future. Are there regional differences as to who is in the MDT? - What disciplines are in the teams? In a standard MDT the disciplines mostly found are neurologists, nurses, neurosurgeons physios, and speech therapists, sometimes occupational therapists may join the team. The rest of the specialities depend on funding and available specialised professionals. Regarding Young people with PD I would encourage the concept of self-management and use of individualised strategies to cope in daily life and society. Vicki Segro Wed, 12 Oct at 11:04am What Models of Multi or interdisciplinary care are there? - I work in a private practice in Colorado and we will refer people to specialists individually. We have a good group of people (ST, OT, PT, SW, neuropsych and physiatry) we refer to who take most insurances. In advanced disease, however, we have 2 "advanced care" or "palliative care" clinics available for our patients. Most of our patients who do not have advanced disease need individualized referrals based upon their needs. How do people access specialist teams? - Access to specialists is based upon availability of the specialist (how far are they booking out for new patient evals) and what type if insurance they accept. Colorado has a privately funded nonprofit that has a list of movement disorder specialists available in the state. Do all people have access to a specialist movement disorder team? - Not all. Honestly, there is a reluctance of general neurologists to refer patients out to a PD specialist and I think this is due to financial reasons more than anything. The Parkinson's association of the Rockies (nonprofit) encourages people to see PD specialists IF they are connected to the organization. Are there regional differences as to who is in the MDT? - There are regional differences in the state based upon the specialists level of experience and fund of knowledge. We have a couple of neurosurgeons in the state who will implant DBS even without a comprehensive eval including neuropsychology. Other centers provide excellent care/ How do people find a skilled team and how could we increase the ability of people to access skilled health care professionals - Local nonprofits and also some national organizations if they are internet savvy. Surprisingly, some people look to social media such as facebook for information.

4 4 of 7 10/17/2016 9:52 AM In regards to YOPD, I think this is an interesting topic. Support groups in my state are not always helpful for these people if they have a lot of elders in the group or if elders lead the group. A lot of my patients look to the internet for support. We have a group of actual YOPD patients who act as an organized peer support network for newly diagnosed YOPD Ruth Hagestuen Wed, 12 Oct at 4:19pm via Vicki s comments provided a good description of regional challenges regarding access to specialist care and differences from regional to region in the US. Although not universally true, rural areas in particular, lack access to movement disorders specialists and movement disorders teams. As previously suggested, telemedicine offers enormous potential in addressing these challenges of distance and transportation challenges. Funding and reimbursement issues have slowed the development of and access to the telemedicine option. Interestingly, there are a number of interprofessional movement disorders teams developing, even in rural areas. These are usually a result of motivated leadership, professional and community partnerships working within a community or university system to progressively build such capacity. Movement Disorders core teams often seen as ideally consisting of Neurologist (often including NP), Nurse, PT, OT, SLP, SW, psychologists. The most common staffing problems in terms of this core group (on an outpatient basis) are nurse and social worker, with lack of available funding being the most common rationale. Although the importance and essential role of both nurse and social worker in the interdisciplinary team is widely recognized, more work needs to be done in terms of documenting the value of each as part of the PD and Movement Disorders team. Other disciplines that some teams have been able to include are: music therapist, dietitian, pharmacist, chaplain and others. Models of care vary greatly from one location to another both regionally and internationally. Variabilities in healthcare systems. availability of resources and uniqueness of each location have an impact on how care strategies can be organized. However, there are some evolving trends as teams develop specialized interdisciplinary or inter professional clinics for different stages and ages. As Vicki mentioned, advanced care clinics, palliative care teams, or specialized programs and strategies for newly diagnosed and early onset. Many are also very involved with wellness initiatives and well organized educational programs as part of their integrative approach to comprehensive care. Maria Elisa Pimentel Piemonte Wed, 12 Oct at 8:10pm What Models of Multi or interdisciplinary care are there? Brazil is a very large country divided in five regions which has important differences in terms of socialeconomic development. We work in the most developed region, Southeast, in Sao Paulo city. Then, our reality is better in comparison the other poorer regions. In Brazil Parkinson Association, the biggest patient s association in Brazil, we have a very enthusiastic interprofessional team. This team is formed by PT, ST, psychologist, nutritionist, physical trainer, dentist, music therapist and art therapist. The team interaction is very good and we have some transdisciplinary interventions as the senior dance, an activity which is planned and guided by PT and psychologist. At University of Sao Paulo, we have a interprofessional team with PT, ST and OT. The evaluation following the ICF framework and some therapies are done by transdisciplinary model. The majority of people with PD in both services are in intermediate stage of disease. In the private practice the unidisciplinary care is predominant. How do people access specialist teams? The nonprofit associations offer a list with names and address of Neurologist, PT, OT, etc., specialized in PD. However, most part of them work in private practice only. Do all people have access to a specialist movement disorder team? Even in the richest Brazilian cities, few people have access a specialist team. Some rehabilitation centers and universities have specialist MDT. However the waiting time to start the treatment is long. Are there regional differences as to who is in the MDT? As I have commented above, there are very important regional differences in Brazil. We are working in a large network ( which gets together people with PD, families/caregivers and professionals interested in PD in order to improve the interprofessional care in

5 5 of 7 10/17/2016 9:52 AM all Brazil. In regards to YOPD, in my opinion an important topic to be discussed is the impact of PD on the participation domain, according to ICF model. Considering that young persons are in productive age, many times have children and a lot of responsibilities, the challenges imposed by PD under social aspects are very important for them and their families. Another important topic is strategies to improve the level of physical activity considering possible long term neuroprotective effects. Samantha Surillo Thu, 13 Oct at 9:42am Dear All, Thank you for your time, feedback, and participation. The meeting is now closed. If you have any additional commentary, you may add it within the next 24 hours. I will reconnect with you all once I've had an opportunity to discuss the groups' feedback with the Chair and Co-chairs. If anyone has any questions in the meantime, please me at ssurillo@movementdisorders.org. Kind regards, Samantha John Dean Thu, 13 Oct at 10:24am via Sorry to be late to the conversation, September and October are particularly busy months for the Parkinson s community. Thank you for giving me the opportunity to get this in under the wire, Samantha! What models of care exist in the US? I don t currently work in an interdisciplinary environment but as many of you know, I developed a couple of networks of interdisciplinary rehab teams for Life Care Centers of America using a model gleaned largely from the Dutch ParkinsonNet program and relying heavily on training from the Allied Team Training Program (ATTP). I think there s a bit of a final mile problem with interdisciplinary teams in the United States. Vicki Segro s excellent program is one of only two interdisciplinary Parkinson s programs in Colorado that have a full contingent of a true interdisciplinary team (movement disorders specialist, rehabilitation, psychology/neuropsychology, social work and other specialists). And both of those programs are located within 10 miles of each other in the greater downtown Denver Metropolitan statistical area. There are other movement disorders specialists but they typically work as solo practices or within a larger neurology practice and refer out to other healthcare professionals (particularly with rehab clinicians such as physical, occupational and speech therapy). I think it s difficult to replicate the level of collaboration that occurs with an interdisciplinary team (and I would highlight the model of the NPF centers of excellence as a gold standard although there are other excellent models internationally). That was my initial motivation behind development of interdisciplinary rehab teams (PT, OT, speech and occasionally a social worker when we were fortunate enough to have one available). Essentially, the goal was to have our patients continue to see their movement disorders specialists but come to our clinicians (at outpatient clinics based within skilled nursing facilities that also performed subacute rehabilitation). That way they didn t need to travel as far for the ongoing therapy. I think the US is a difficult area to try to replicate the Dutch network-based care with interdisciplinary teams. The competitive landscape is a double-edged sword. On the one hand, I think one of the most beneficial things that came from the programs I built was all the programs that were built in the areas nearby in order to compete with us. I refer to that as the ecosystem effect and it s definitely helpful for people living with Parkinson s. However, is not evenly distributed, orchestrated or managed in any way. Simply put, programs developed in places that had someone in leadership that got it (or a John Dean pushing things forward in the background). Once that leadership was gone, the program doesn t typically continue or, as I ve noticed at my former employer, limps along under the power of local champions who continue to believe in the power of interdisciplinary care for Parkinson s.

6 6 of 7 10/17/2016 9:52 AM Kaiser Permanente in California has very successfully replicated the Dutch model (largely by hiring the Dutch to help them build it). I just had the opportunity to meet with Suketu Khandhar of Kaiser in Northern California and he seems well on his way towards replicating the very successful program that began in Southern California in I think this works very well because Kaiser is a closed system and can control not only the quality of training but the clinicians providing the services. In the Netherlands, membership in Parkinson that as a clinician is well-controlled and that is intentional in order to provide them with the proper amount of clients each year to maintain a level of expertise in the disease. My question is whether that is replicable outside of a closed system such as Kaiser. The Dutch traveled to Grand Rapids and established a partnership with Dr. Brundin s amazing program at the Van Andel institute. It ll be interesting to see how they negotiate the Medicare and insurance landscape. Outside of that, probably the strongest program I am aware of is the one established by Ruth H. via ParkNicollett in Minnesota. Again, I think that was a perfect storm of the right leadership and the right advocacy and a large enough network to try things forward. I believe that there s a component that incorporates local subacute and skilled nursing facilities but Ruth is really the expert of that project so I don t want to speak out of turn. OHSU also has their TEAM PD network. I believe that they provide a lot of training for that internally and, having been to a couple of their trainings over the years, they do an excellent job (not surprising given some of the amazing people who work at that institution). However, I m not certain as to how far that network extends. Dr. Nina Browner at the University of North Carolina has attempted to build an ad hoc network in order to have clinicians to refer to throughout North Carolina but that s not a formal network (and I think she also relies heavily on the ATTP for training). That is the landscape of as I know it. I very purposefully am not including the NPF Centers of Excellence and Care Centers as well as many of the excellent university-based movement disorders clinics around the country. To me those are the top level programs and provide excellent care but that doesn t trickle down to many of the regions of the country where people with Parkinson s or living. I believe that might change in the future with tele-practice and other advances but that doesn t address the need in the near-term. That having been said, I think there are excellent clinicians with expertise in parkinsons located outside of these pockets of top level care and it would be helpful to find a way to direct referrals to them. How do people access care with specialists? I really think this is a very important issue because it s not at all equal. Some of it is geographic, some of it is socioeconomic. My personal experience is that direct advocacy in northern Colorado by myself in my colleagues has led many people to seek out care with a movement disorder specialist but absent that advocacy, I m not sure that people would find access. Regional differences? Absolutely there are regional differences. Colorado currently has 13 movement disorders specialist for a state of about 7 million (~20,000 people living with parkinsons). 11 of those movement disorders specialists work in The greater Denver area. A couple travel north 1-4 days a month but for all intents and purposes, they are Denver-based. There s an excellent movement disorders specialist on the far west side of the state (aka western slope) and Kaiser Permanente hired the only northern Colorado based movement disorder specialist in full-time practice (awesome for them, less so for the rest of us ;)). Again, referring to my initial response, my motivation for building interdisciplinary rehab teams was to provide access to outline an underserved regions of the country. However, as I pointed out previously, our teams were all rehab without movement disorders specialists, neuropsychology or other advanced specialists. As you can imagine, there s a significant disparity in quality of care that is largely engendered by the distance necessary to travel for expertise. I was recently in Grand Rapids for a program at the van and wants to do. That city of 200,000 has 7 movement disorders specialist (again I think this is the ecosystem effect, this time generated by the van Andel Institute).

7 7 of 7 10/17/2016 9:52 AM Colorado actually compares favorably when you compare it to Wyoming (the state next-door that has absolutely no movement disorders specialist) or Utah which has one movement disorders specialist in the entire state. Kansas and Nebraska have excellent programs in each state but they are limited to the large metropolitan statistical area (similar to the issues with Colorado ) would it be beneficial to have a directory listing of other allied health care professionals ala Partners in Parkinson s? Absolutely! I was having this conversation with Hanneke Kalf in Portland. The first thing I did with that then came out was look for my name and I wasn t listed, only doctors were included. I can see both sides of that coin in that if you were a movement disorder specialist, you have been vetted by a third-party and have expertise. However, there are a lot of practitioners with proper training (ATTP, LSVT, PWR!etc) that might be more accessible or at a bare minimum would allow people in outlying regions to access rehab and other services without having to travel all the way down to a university program or center of excellence. Again I think the difference is seeing a movement disorders specialist an hour or two away is viable and feasible but attempting to do 6-10 sessions of therapy over the course of a month is burdensome. And many of these therapist also end up developing exercise programs and other classes in the region that can provide ongoing services at a much lower cost. I think the biggest issue is figuring out how to accredit HCPs. And actually, I think membership in the HP SIG, particularly if we were able to supplement it with discipline specific training (which could be a revenue source if produced as continuing education). Finally, specifically with respect to young onset Parkinson s, I think that is a community that is more comfortable with technological Solutions and I believe that s an opportunity for us to leverage relatively inexpensive tech in a way that could reach out to the larger community. As older persons with Parkinson s become more familiar and comfortable with technology, it might provide us with a vector to reaching out to members of the community that are largely underserved due to geographical limitations. I look forward to that Basecamp conversation -John Sent from my iphone >