Posts tagged pediatrics

Peds SIG Offers New Avenues for Involvement in the Field

Although it was painful to get up so early on the final day of the AAHPM Assembly in Vancouver, it was completely worthwhile to attend the meeting of the Pediatrics Special Interest Group (SIG). Over the years that I’ve attended this meeting, it’s been amazing to watch the evolution of interest and attendance in our SIG, and the parallel explosion of pediatric education, research and advocacy opportunities.

In 2007, our statewide pediatric palliative care (PPC) network OPPEN (Ohio Pediatric Palliative and End-of-life care Network) organized a national conference as a follow-up to the National Hospice and Palliative Care Organization’s (NHPCO) pediatric conference in Dearborn, Michigan in 2004. These efforts were organized precisely because there was no place for PPC providers to go to find educational and research information and to network with colleagues; most national conferences had only occasional, if any, pediatric content. Fortunately, that has certainly changed!

For the past few years, the AAHPM has offered greatly increased pediatric content at the Assembly, with pediatric sessions in almost every concurrent slot, as well as large numbers of pediatric paper presentations (which are often award winners). Pediatric representation exists throughout the organization, from workgroups and committees through the Board of Directors.

Similarly, NHPCO has been offering a pediatric track at its Clinical Team Conference for several years now, and its advisory group ChiPPS (Children’s Project on Palliative and Hospice Services) has expanded, undergone strategic planning, and taken on a leadership role in equipping hospice and palliative care organizations to care for children and in working closely with NHPCO in its advocacy and policy activities (

The American Academy of Pediatrics (AAP) has also jumped on the PPC bandwagon, with the establishment of the Section on Hospice and Palliative Medicine. This group is focusing primarily on policy and educational activities, including opportunities for scholarly activity through the AAP’s main meeting, the National Conference Exhibition. The Section maintains 2 listservs that boast healthy discussion about many aspects of our field, 1 for members and 1 for any interested parties; Affiliate Membership is possible for non-physicians as well (; check out the web page soon for a more expanded discussion of each of these national opportunities for PPC involvement and commitment).

The Center to Advance Palliative Care has recently increased its pediatric focus too. Last fall, the annual conference included a pediatric track for the first time, and that will continue this year. Palliative Care Leadership Center tools and training for programs interested in starting or growing a PPC or hospice program have been available through a number of different sites for years; in 2008, 2 pediatric-specific sites were added (Akron Children’s Hospital and Children’s Hospitals and Clinics of Minneapolis) and a new pediatric curriculum was developed (

And there are other groups involved with PPC as well. A few more highlights include:

  • PEPPERCORN, the Pediatric Palliative Care Research Network, a dedicated group of researchers from a number of sites across North America who are working individually and collaboratively to advance the science of PPC
  • The Hospice and Palliative Nurses Association (, which has successfully developed a pediatric nursing certification examination in hospice and palliative care, and is also developing accompanying educational material
  • The National Networks for Pediatric Palliative Care (, a grassroots effort focused on developing a web-based clearinghouse of programs and information for families and providers.
  • The Pediatric Hospice and Palliative Medicine Competencies Project, a group of PPC leaders who have been working with the original HPM competencies document and authors to create a companion resource for pediatrics; importantly, the AAHPM’s Board of Directors approved support for this project at this year’s board meeting.

During this time, the Academy’s SIG has continued to meet and grow. In the last few years, we’ve become more organized, along with all SIGs in the Academy which are receiving more support through the new and expanded Communities model. We’ve developed an elections process, allowing a rotation of leadership and the opportunity for younger or newer folks in the field to become involved. This year’s Assembly featured a Pediatric SIG-sponsored session which was very well received. And there were a tremendous number of great suggestions for next year’s Assembly that were generated at the SIG meeting. Our next big push will be for a pediatric plenary!

In short, it’s a great time to be in pediatric hospice and palliative care. Seeing colleagues, learning about many new avenues to become involved in the field, talking about challenging and uplifting situations, sharing wisdom and lessons learned, and literally catching the contagious excitement among us were just a few of the reasons to get out of bed on Saturday morning for the SIG meeting. Hope to see you there next year in Denver!

A Whirlwind Tour of Pharmacology for Symptom Mangement in Pediatric Patients

Today at the AAHPM Assembly, I had the opportunity to attend a much-needed session on pharmacology for symptom management in pediatric patients. Sponsored by the Pediatric Special Interest Group, this “whirlwind tour” covered pharmacologic approaches to depression, anxiety, delirium and insomnia in children. The three presenters from San Diego Hospice – a palliative care physician, a child psychiatrist and a pharmacist – effectively used video and powerpoint to get a lot of important points across quickly. While a bit more attention could have been paid to time management, this was an important session that could easily have been 2 hours in length, and the presenters definitely conveyed the main points in a clear and easy-to-follow fashion.

In pediatrics, we suffer from a practice gap in that there remains such a dearth in evidence-based research for much of our clinical practice. So we rely on anecdotal evidence, or fly by the seat of our pants. It’s very helpful to have guidance and wisdom from a long-established program who have amassed a significant clinical history with pediatric patients. What was particularly informative was the data table that they put together and freely shared, listing all of their recommended pharmacologic choices for each symptom, along with mechanism of action, dosing guidelines, absorption/metabolism/excretion information, common adverse events, and specific clinical pearls about their use. The table also included an algorithm specifying first and second-line choices for each symptom.

One of the many great things about the pediatric palliative care community is the unselfish sharing that we do – as exemplified by the resources offered at today’s presentation. At a national level, we’re currently working on ways to store and share important and widespread information that would benefit everyone, including clinical pathways/protocols, seminal presentations, program development tools, policies/guidelines, and bibliographies. Stay tuned to the AAHPM SIG webpage for updates as to how this information will be made available!

Research in Children with Advanced Illnesses: Advancing the Field Together

Have you ever been in a room of like-minded individuals who share the same passion? It is an invigorating and energizing experience!

Hi, my name is Cindy Bell and I am the Blogger for the pre-session Research in Children with Advanced Illnesses: Advancing the Field Together. There were several experts who presented and many more who were gathered around the room. Each brought invaluable insight to identify some of our BIGGEST CHALLENGES in doing research involving children with advanced illnesses. Collectively we discussed some possible solutions. As we mull over and digest this information, this blog gives us the opportunity to discuss some of our lingering questions.

  • Chris Feudtner, MD PhD MPH, Director of Research, Pediatric Advanced Care Team at CHOP (The Children’s Hospital of Philadelphia) gave us a very broad overview of pediatric palliative care research as well as research priorities in the field. One of my most significant take away points from Chris was that through education, exposure, and support we morph over time. So, what do we need to change to get the job done? This type of research has many barriers. Someone mentioned that in the 5 years their study was open; they put in 15 amendments to IRB. As Chris aptly pointed out, maybe we need to change the name of the study and say,”This is a study about decision-making”; not palliative care or death and dying. We are not the only ones “morphing.” He had us think a moment about the impact of our research. What is the collateral effect of our research on our colleagues? Clinical practice influences research but research in turn, impacts clinical practice. So what do you and I need to change at our institutions through education, exposure support, and collaboration to get the job done?

  • Christina Ullrich, MD MPH, and Veronica Dussel, MD MPH, from Dana Farber Cancer Institute & Children’s Hospital Boston kept the ball rolling as we discussed some of our main challenges and possible ways to overcome these challenges.
    • What are some of the barriers you are still struggling with that you would like to discuss further?

  • Pamela Hinds, RN PhD, FAAN Director of Nursing Research at Children’s National Medical Center in Washington D.C. offered insight on Qualitative Research which allows us to listen to the problem and develop ways to address the problem. Being “listened to” can be very therapeutic for our patients and their families who are facing life-threatening diseases.
    • One important caveat for qualitative researchers is to match the person, topic, and context. Pam presented specific education on coding data for Content Analysis and Grounded Theory methods. Some of us had questions on the software available for coding. There are 2 programs that several participants are using: NVIVO and Atlas-TI. Betty Davies, RN PhD FAAN, shared some names of “experts” who are available for collaboration on Grants, including Guenther Krueger (NVIVO) from Burnaby, BC, Canada and Nick Wolf (Atlas-ti) from Santa Barbara, California.
    • PROMIS outcome site is another resource Pam mentioned. There are some outcome measurements for pediatrics that have been developed, although they haven’t been tested in really sick children yet. Check it out!

  • Joanne Wolfe, MD MPH, Director of Pediatric Palliative Care at Children’s Hospital Boston offered wonderful insights throughout the day and expertly summarized our ½ day session. I have briefly included some of the highlights. Please feel free to add your thoughts!
Our Big Challenges Possible Solutions
  • To facilitate an environment that will support research for children with advanced illnesses
  • Start somewhere – do what you can do, then bring back your publications to your institution
  • To develop multi-site studies to move the science forward
  • Build collaborative relationships- start simple and work together
  • What ways you have developed these collaborations?
  • To extend beyond our primary discipline to conduct interdisciplinary research across groups
  • Ask, invite, and be visible within your organization
  • To reach beyond our borders to collaborate with other Nations
  • Recognize the unique contributions of other cultures
  • What are some ways you have been successful in collaborating internationally?

Thank you to our excellent facilitators pictured left to right (Joanne Wolfe, Pamela Hinds, Christina Ullrich, Chris Feudtner, and Veronica Dussel).

It has been difficult to capture all of the wonderful information that was discussed. Now it’s your turn to add your thoughts and comments. Happy Blogging!

It has been my pleasure,

Cindy Bell, PhD(c), RN

Pre-doctoral Fellow, Mary Margaret Walther Program of Cancer Care Research, Indiana University. (Novice blogger)

SAVE the DATE: Quality of Life for the Children: The Fourth Annual Pediatric Palliative Care Conference November 5 & 6, 2010. For more information email

Managing Neuropathic Pain in Palliative Care

What an enjoyable and totally painless experience attending this lecture turned out to be. Stefan Freidrichsdorf was entertaining as well as completely knowledgeable about this subject. His use of movie clips to illustrate a point was unique; his case study was compelling. The case study had multiple elements that lent themselves to illustrated several points throughout the presentation. Stefan started the lecture reminding us that we begin with acute pain management: by the clock, by the child, using the appropriate drug, using the WHO ladder. From there, he launched into a description and discussion of neuropathic pain and the different modalities used to treat it. Starting with opioids, going to antidepressants, using anticonvulsants, and then using other integrative therapies. neuropathic pain is not a mountain to be avoided, but rather a challenge that can be successfully met. He showed us, through his case study, how he used various modalities, to obtain successful management of severe neuropathic pain with a challenging pediatric patient. Included was an excellent overview of Neurontin and Lyrica, with the various side effects seen in children.

I am not a pediatric clinician. I’m at this Conference trying to learn as much as I can, because my organization is actively recruiting more pediatric patients to my facility. I need to be better capable of caring for them. Dr Friedrichsdorf inspired me to continue my studies with this population. Like the geriatric population that I have cared for for so long, this population lacks RCTs specific to their needs. Much has to be extrapolated from adult studies, with much trial and error.

I’m anxious to hear more from researchers and clinicians like this speaker.

Beverly Douglas ARNP

LifePath Hospice

Tampa, Florida