The document summarizes the development and services of the Integrative Medicine and Palliative Care Team (IMPACT) at Children's Hospital at Montefiore. It describes how IMPACT began with a few clinicians in 2005 and has expanded to include various complementary and alternative medicine services. IMPACT assesses patients' physical, psychosocial and spiritual needs. It also provides education to medical staff and students on palliative care and integrative medicine. IMPACT is researching the effectiveness of interventions like aromatherapy, yoga and alternative diets.

1. The Integrative Medicine and Palliative Care Team Karen Moody MD, MS Children’s Hospital at Montefiore Albert Einstein Cancer Center Retreat May 5, 2010

2. Background Pediatric palliative care is a multidisciplinary care model that evolved from the hospice philosophy to meet the gaps in care for seriously ill children. It aims to minimize pain and suffering and maximize quality of life for the child and family, including physical, psychosocial, spiritual and practical domains. It begins when diagnosis of life limiting/life threatening illness is made and is continued through bereavement.

3. Progressive transition to palliative care

4. The need for palliative care 2000 Joanne Wolf et al. “Symptoms and Suffering at the End of Life in Children with Cancer” NEJM reported 89% of children suffer “a lot” or “a great deal” from at least one symptom at the end of their lives (pain, dyspnea, fatigue)/ 27% of patients with pain treated effectively

5. Improvements in palliative care delivery A follow up survey by the same author after the development of a palliative care program showed: Decreased suffering from pain 47% vs 66% * Decreased suffering from dyspnea 37% vs 58% * Documented DNR discussion 74% vs 54% * Earlier hospice discussion 52d vs 28d * Fewer ICU deaths 22% vs 38% * More parents felt prepared for outcome 49% vs 25% * * = p<.03

6. Needs assessment In order to develop a comprehensive palliative care program to meet the needs of our unique population we reviewed the literature on psychosocial and spiritual needs of pediatric cancer patients from culturally diverse backgrounds, low socioeconomic backgrounds and those living in medically under-served communities. Very limited data available We surveyed the staff of CHAM regarding the perceived palliative care needs.

7. Needs assessment We performed an assessment of psychosocial needs of children with cancer at CHAM. Our aim was to gather information about the demographic characteristics, clinical characteristics, and the types and frequency of needs present in this population in 4 domains: practical, informational, supportive, and spiritual.

8. Results 102 surveys 91 parents 49 children (42 dyads) 65% male Mean age 10 y. (SD 6.4); range 0-21y

9. Demographic characteristics 3% Multi-racial 28% African American 16% White 2% Native American 4% Asian or Pac Islander 43% Hispanic Race n = 102 Category Variable

10. Clinical characteristics 42% Leukemia Cancer Diagnosis 6% Other 14% NHL or HD 8% Neuroblastoma 15% Sarcoma 16% Brain Tumor n = 102 Category Variable

11. Top 10 parents’ needs ( n = 91 ) 81 Hotlines I can call for information 82 Tests used to find cancer 82 Immediate side effects of treatment 84 Genes and cancer 86 Relaxation and stress management strategies 87 Alternative & natural treatments for my child’s type of cancer 88 Healthier ways to eat 91 Long-term side effects of treatment 91 What my child can eat to help with treatment side effects 94 Things I can do to reduce my child’s chance of getting another cancer I would like to learn more about: % Endorsed Item

12. Top 10 children’s needs ( n = 49 ) 61 What I can do about pain 65 Genes and cancer 65 Alternative & natural treatments for my child’s type of cancer 67 Relaxation/stress management 67 Tests for different types of cancer 67 My type of cancer 76 Healthier ways to eat 81 Long-term side effects of treatment 84 Things I can do to reduce my chance of getting another cancer 84 What I can eat to help with treatment side effects I would like to learn more about: % Endorsed Item

13. Conclusions from needs assessment Families need more information (in understandable language) regarding: Diet Secondary cancer prevention Late effects Complementary medicine Diagnostic tests Cancer specific information (& genetics) Our population has many supportive and practical needs as well.

14. Development of IMPACT We began with a doctor, a social worker and a child life specialist (2005) and started doing whole patient assessments consistent with a palliative care approach: Assessing what patient/family knowledge of disease and prognosis Comprehensive symptom assessment including head to toe ROS, pain score and description, appetite, sleep, anxiety, shortness of breath, ADLs, and depressive symptoms Psychological history explores feelings in more detail Social history to include short and long term goals, home environment, social support network Spiritual history that including personal and community practices, effects of the practice, and general exploration of the meaning of life and in some cases of disease.

15. Impact assessment CAM use/interest Diet Spiritual history- faith, role, community, leader Preferences- decision making/sharing Practical-contact numbers, key members of that patients heath care team Family assessment- coping/siblings Goals of care

16. What is CAM? Complementary and alternative medicine or “CAM” is defined “A broad domain of healing resources that encompasses all health systems, modalities, and practices and their accompanying theories and beliefs, other than those intrinsic to the politically dominant health system of a particular society or culture in a given historic period.” Roth, M J Ped Heme Onc Mar 2009

17. Definitions Complementary vs. alternative Holistic medicine caring for the whole patient-body, mind, emotions, and spirit- in the context of the patient’s and family’s values, culture, and community. Integrative medicine considering a broad range of therapies and selecting those that have the best evidence of safety and effectiveness in the context of holistic care

18. IMPACT business plan We put together a comprehensive business plan for the program and applied to private foundations for funding. We acquired approximately one half million dollars in funding for pain, palliative and complementary medicine services. Some of this money was used to train current staff in complementary medicine modalities such as Reiki.

19. IMPACT We named our program, “The Integrative Medicine and Palliative Care Team (IMPACT)” Our team has expanded to include staff nurses, a clinical nurse specialist and nurse practitioner, CAM practitioners, a nutritionist, a yoga teacher, a massage therapist, a psychologist, and a chaplain.

20. IMPACT services Primary reasons for referral include pain, nausea, anxiety, poor weight gain, poor prognosis, and family interest in CAM. IMPACT services have grown to include: Herbal medicine and dietary supplement consultation Yoga Massage Acupuncture Nutrition counseling Mental health/social work services Reiki Aromatherapy Spiritual support

21. Weekly interdisciplinary patient care rounds Biannual team retreats Provide some services to staff Debriefing sessions with psychologist Massage Yoga Reiki IMPACT SERVICES

22. IMPACT staff education A large scale educational initiative was undertaken to bring social workers, child life specialists, physicians, and nurses up to speed with current palliative care practice guidelines and up to date research. Oncology physicians were given a one hour seminar monthly for a year which covered relevant key topics in palliative care. Non physician health care providers were offered the End Of Life Nursing Education Curriculum- Pediatric Palliative Care.

23. IMPACT medical student education Third year medical students rotating through pediatric and family practice rotations are provided with didactic and experiential palliative care education. A combined elective in pediatric and adult palliative care is currently available to 4 th year medical students. Oncology fellows are able to participate in IMPACT consultations. 4 th year medical students on a spirituality elective participate as well in IMPACT meetings and consultations.

24. IMPACT Research 1. The Effectiveness of the Neutropenic Diet versus Food Safety Guidelines on Infection Rate in Pediatric Oncology Patients. A Randomized Trial of the Effects of Aromatherapy on Chemotherapy Induced Nausea and Vomiting in Children with Cancer. A Retrospective Review Of the Effect of Yoga on Pain in Children with Sickle Cell Disease and Cancer. The Impact of a Palliative Care Educational Initiative in Medical Students’ Perceptions, Knowledge and Clinical Skills In Palliative Care. A Study Of Burnout In Pediatric Hematology-Oncology Physicians

25. The Effectiveness of the Neutropenic Diet This prospective randomized clinical trial investigates whether children with cancer who follow food safety guidelines are at any increased risk for infection compared with those who follow a traditional neutropenic diet. The neutropenic diet is intended to reduce pathogen ingestion by excluding certain foods, most commonly raw fruits and vegetables; undercooked eggs, meat, fish and poultry; and unpasteurized dairy products. Due to insufficient evidence, the U.S. Department of Health & Human Services does not endorse this diet. Instead, they offer food safety guidelines, which emphasize safe food handling; well-cooked meats, fish, and, eggs, and poultry; pasteurized milk products; and a safe water supply. Karen Moody, MD

26. The Effectiveness of the Neutropenic Diet The excess food restrictions imposed by the neutropenic diet may not be necessary and may actually compromise quality of life, as food related issues have been shown to play a major role in the quality of life of children with cancer. Additionally, children with diets poor in fruit and vegetables, which are restricted on a neutropenic diet, have higher rates of obesity and cancer, problems already faced by this population. Karen Moody, MD

27. The Effectiveness of the Neutropenic Diet We hypothesize that children following food safety guidelines will not have an increased infection rate compared with children following a neutropenic diet and that they will have better quality of life. Children are being recruited from 4 collaborating pediatric oncology programs, and 5 additional programs are planning to open the study. To date, 52 patients have completed the study. The results from this study will serve as the basis for the creation of evidence-based dietary guidelines for this population to maximize health and quality of life. Karen Moody,MD

28. Aromatherapy for the Reduction of Nausea Aromatherapy involves the use of volatile essential oils for the purposes of improving health. This prospective randomized trial compares the effects of combination aromatherapy, (spearmint, peppermint, lavender and ginger) with placebo (inhalation with no scent) on severity of nausea and vomiting in children receiving chemotherapy for cancer. To date, 21 children have completed the study. Karen Moody, MD

29. The Effects of Yoga on Pain and Anxiety in Children with Cancer and Sickle Cell Disease. Yoga refers to yoga postures, breathing techniques and meditation. This is a retrospective chart review of pain and anxiety before and after patients received yoga. To date, 58 charts have been reviewed. Preliminary analysis suggests that yoga may be effective in reducing pain and anxiety in this population. Karen Moody, MD

30. These data indicate there was an average increase in pain scores for 2 patients (case 11 and 14). It should be noted that the patients both received intra-muscular medication administration during the yoga session. Where there is no bar, it indicates that that patients had 0/10 pain pre and post yoga

31. Anxiety Graph 2. Patient Mean Baseline and Follow-Up Anxiety T-scores

32. Table 2. Summary of Collected Data A paired, two-tailed t-test comparing pre- and post- yoga pain scores when we censored the two cases where patients received shots changes the score, which becomes statistically significant: p-value = 0.005 -9.62 -0.57 Average Change in Score <0.0001 0.079 P-Value 44.7 54.3 Anxiety T-Score 2.73 3.30 Pain Score Average Post-Yoga Score Average Pre-Yoga Score

36. Patient Quotes Table 3. Patient Quotes: &quot;Do you think my neck pain/shoulder pain is related to stress?&quot; &quot;I think that worked.&quot; &quot;It was nice and very relaxing, and I want to do it again.&quot; &quot;I feel more relaxed. I have pain but I don’t feel it.&quot; &quot;I feel very relaxed, and want to do it again…I want to learn different ways to help me fall asleep.&quot; “ I feel more relaxed in my body and brain. I am thinking about less things.” “ I was feeling tense…now I feel more relaxed.” “ I enjoyed it.” Sample Patient Quotes Post Yoga

37. Questions ?