Photo of Joanne Wolfe,  MD, MPH

Joanne Wolfe, MD, MPH

Dana-Farber Cancer Institute

Dana-Farber Cancer Institute
Phone: (617) 632-5286
Fax: (617) 632-2270


joanne_wolfe@dfci.harvard.edu

Joanne Wolfe, MD, MPH

Dana-Farber Cancer Institute

EDUCATIONAL TITLES

  • Associate Professor, Pediatrics, Harvard Medical School
  • Attending Physician, Population Sciences, Dana-Farber Cancer Institute
  • Director, Pediatric Palliative Care, Medicine, Boston Children's Hospital
  • Medical Director, Pediatric Advanced Care Team, Boston Children's Hospital

DF/HCC PROGRAM AFFILIATION

Research Abstract

Within the broader field of health services research in oncology, Dr. Wolfe's original work focused on assessing the patterns of care, determinants and outcomes of the care of children with advanced cancer using survey methodology. She first became interested in investigation the quality of care for children with advanced care during her fellowship training when she embarked on a research project to identify the needs of children with cancer who have life-limiting illness and how to better support their families. This project led to two high profile research publications in the New England Journal of Medicine (342:326-333, 2000) and the Journal of the American Medical Association (284: 2469-2475, 2000).

Dr. Wolfe is currently heading a research program evaluating interventions aimed at improving quality of life for children with advanced cancer. The PediQUEST Study is a multicentered randomized controlled trial (RCT) aimed at assessing the effect of a novel intervention in children with advanced cancer. Specifically, the study is assessing whether increasing physician and family awareness about the child’s experience effects parent-physician communication and child suffering. This is assessed by means of routinely measuring and reporting symptom and quality-of-life data using an innovative data collection strategy: a hand-held computer devise, the Pediatric Quality of Life and Evaluation of Symptoms Technology (PediQUEST). PediQUEST readily administers a user-appropriate survey instrument and has the ability to generate an instant report summarizing how the patient feels. All study participants complete PediQUEST at the clinic, hospital or over the phone at most once a week. Parents are asked to complete a survey about their views about their child’s illness 4 times during the 9-month follow-up period. Physicians are also asked about their perspectives on the child’s illness. Upon enrollment, subjects are randomized to the intervention or control arms of the study. The intervention consists of giving feedback reports generated by PediQUEST to the family and physician. Furthermore, primary oncologists, nurses, and psychosocial clinicians, along with the Pediatric Advanced Care Team (PACT) and the Pain Treatment Service receive emails alerting them to uncontrolled symptoms. The control arms completes the same instruments but feedback is not generated.

This project represents one of the first efforts to assess the feasibility of conducting a randomized controlled supportive care trial in children with advanced cancer. We anticipate that results from this project will lead to important understanding of how to successfully plan an RTC in this patient population. We will also preliminarily evaluate the impact of an innovative approach to improving quality of life and comfort in children with advanced cancer through PediQUEST provider and parent feedback.

Publications

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  • Kassam A, Skiadaresis J, Alexander S, Wolfe J. Differences in end-of-life communication for children with advanced cancer who were referred to a palliative care team. Pediatr Blood Cancer 2015; 62:1409-13. PubMed
  • Wolfe J, Orellana L, Ullrich C, Cook EF, Kang TI, Rosenberg A, Geyer R, Feudtner C, Dussel V. Symptoms and Distress in Children With Advanced Cancer: Prospective Patient-Reported Outcomes From the PediQUEST Study. J Clin Oncol 2015; 33:1928-35. PubMed
  • Baker JN, Levine DR, Hinds PS, Weaver MS, Cunningham MJ, Johnson L, Anghelescu D, Mandrell B, Gibson DV, Jones B, Wolfe J, Feudtner C, Friebert S, Carter B, Kane JR. Research Priorities in Pediatric Palliative Care. J Pediatr 2015. PubMed
  • Bona K, London WB, Guo D, Abel G, Lehmann L, Wolfe J. Prevalence and impact of financial hardship among New England pediatric stem cell transplantation families. Biol Blood Marrow Transplant 2015; 21:312-8. PubMed
  • Friedrichsdorf SJ, Postier A, Dreyfus J, Osenga K, Sencer S, Wolfe J. Improved quality of life at end of life related to home-based palliative care in children with cancer. J Palliat Med 2015; 18:143-50. PubMed
  • Dussel V, Orellana L, Soto N, Chen K, Ullrich C, Kang TI, Geyer JR, Feudtner C, Wolfe J. Feasibility of Conducting a Palliative Care Randomized Controlled Trial in Children with Advanced Cancer: Assessment of the PediQUEST Study. J Pain Symptom Manage 2015. PubMed
  • Rosenberg AR, Orellana L, Kang TI, Geyer JR, Feudtner C, Dussel V, Wolfe J. Differences in Parent-Provider Concordance Regarding Prognosis and Goals of Care Among Children With Advanced Cancer. J Clin Oncol 2014. PubMed
  • Rosenberg AR, Postier A, Osenga K, Kreicbergs U, Neville B, Dussel V, Wolfe J. Long-Term Psychosocial Outcomes Among Bereaved Siblings of Children With Cancer. J Pain Symptom Manage 2014. PubMed
  • Rosenberg AR, Dussel V, Orellana L, Kang T, Geyer JR, Feudtner C, Wolfe J. What's Missing in Missing Data? Omissions in Survey Responses among Parents of Children with Advanced Cancer. J Palliat Med 2014. PubMed
  • Kassam A, Skiadaresis J, Alexander S, Wolfe J. Parent and clinician preferences for location of end-of-life care: home, hospital or freestanding hospice? Pediatr Blood Cancer 2014; 61:859-64. PubMed
  • Wolfe J, Orellana L, Cook EF, Ullrich C, Kang T, Geyer JR, Feudtner C, Weeks JC, Dussel V. Improving the care of children with advanced cancer by using an electronic patient-reported feedback intervention: results from the PediQUEST randomized controlled trial. J Clin Oncol 2014; 32:1119-26. PubMed
  • Bona K, Dussel V, Orellana L, Kang T, Geyer R, Feudtner C, Wolfe J. Economic impact of advanced pediatric cancer on families. J Pain Symptom Manage 2014; 47:594-603. PubMed
  • Rosenberg AR, Wolfe J, Bradford MC, Shaffer ML, Yi-Frazier JP, Curtis JR, Syrjala KL, Baker KS. Resilience and psychosocial outcomes in parents of children with cancer. Pediatr Blood Cancer 2014; 61:552-7. PubMed
  • Feudtner C, Womer J, Augustin R, Remke S, Wolfe J, Friebert S, Weissman D. Pediatric palliative care programs in children's hospitals: a cross-sectional national survey. Pediatrics 2013; 132:1063-70. PubMed
  • Sanderson A, Zurakowski D, Wolfe J. Clinician perspectives regarding the do-not-resuscitate order. JAMA Pediatr 2013; 167:954-8. PubMed
  • Schmidt P, Otto M, Hechler T, Metzing S, Wolfe J, Zernikow B. Did increased availability of pediatric palliative care lead to improved palliative care outcomes in children with cancer? J Palliat Med 2013; 16:1034-9. PubMed
  • Kassam A, Wolfe J. The ambiguities of free-standing pediatric hospices. J Palliat Med 2013; 16:716-7. PubMed
  • Rosenberg AR, Baker KS, Syrjala KL, Back AL, Wolfe J. Promoting Resilience among Parents and Caregivers of Children with Cancer. J Palliat Med 2013. PubMed
  • Rosenberg AR, Dussel V, Kang T, Geyer JR, Gerhardt CA, Feudtner C, Wolfe J. Psychological Distress in Parents of Children With Advanced Cancer. JAMA Pediatr 2013. PubMed
  • Kassam A, Skiadaresis J, Habib S, Alexander S, Wolfe J. Moving toward quality palliative cancer care: parent and clinician perspectives on gaps between what matters and what is accessible. J Clin Oncol 2013; 31:910-5. PubMed
  • Waldman E, Wolfe J. Palliative care for children with cancer. Nat Rev Clin Oncol 2013; 10:100-7. PubMed
  • Heath JA, Oh LJ, Clarke NE, Wolfe J. Complementary and alternative medicine use in children with cancer at the end of life. J Palliat Med 2012; 15:1218-21. PubMed
  • von Lützau P, Otto M, Hechler T, Metzing S, Wolfe J, Zernikow B. Children dying from cancer: parents' perspectives on symptoms, quality of life, characteristics of death, and end-of-life decisions. J Palliat Care 2013; 28:274-81. PubMed
  • Mack JW, Wolfe J, Cook EF, Grier HE, Cleary PD, Weeks JC. Parents' Roles in Decision Making for Children With Cancer in the First Year of Cancer Treatment. J Clin Oncol 2011. PubMed
  • Dussel V, Bona K, Heath JA, Hilden JM, Weeks JC, Wolfe J. Unmeasured Costs of a Child's Death: Perceived Financial Burden, Work Disruptions, and Economic Coping Strategies Used by American and Australian Families Who Lost Children to Cancer. J Clin Oncol 2011; 29:1007-13. PubMed
  • Ullrich CK, Dussel V, Hilden JM, Sheaffer JW, Moore CL, Berde CB, Wolfe J. Fatigue in children with cancer at the end of life. J Pain Symptom Manage 2010; 40:483-94. PubMed
  • Ullrich CK, Dussel V, Hilden JM, Sheaffer JW, Lehmann L, Wolfe J. End-of-life experience of children undergoing stem cell transplantation for malignancy: parent and provider perspectives and patterns of care. Blood 2010; 115:3879-85. PubMed
  • Dussel V, Joffe S, Hilden JM, Watterson-Schaeffer J, Weeks JC, Wolfe J. Considerations about hastening death among parents of children who die of cancer. Arch Pediatr Adolesc Med 2010; 164:231-7. PubMed
  • Heath JA, Clarke NE, Donath SM, McCarthy M, Anderson VA, Wolfe J. Symptoms and suffering at the end of life in children with cancer: an Australian perspective. Med J Aust 2010; 192:71-5. PubMed
  • Lannen P, Wolfe J, Mack J, Onelov E, Nyberg U, Kreicbergs U. Absorbing information about a child's incurable cancer. Oncology 2010; 78:259-66. PubMed
  • Dellon EP, Shores MD, Nelson KI, Wolfe J, Noah TL, Hanson LC. Caregivers' perspectives on decision making about lung transplantation in cystic fibrosis. Prog Transplant 2010; 19:318-25. PubMed
  • Heath JA, Clarke NE, McCarthy M, Donath SM, Anderson VA, Wolfe J. Quality of care at the end of life in children with cancer. J Paediatr Child Health 2009; 45:656-9. PubMed
  • Mack JW,Wolfe J,Cook EF,Grier HE,Cleary PD,Weeks JC. Peace of mind and sense of purpose as core existential issues among parents of children with cancer. Arch Pediatr Adolesc Med 2009; 163:519-24. PubMed
  • Dussel V,Kreicbergs U,Hilden JM,Watterson J,Moore C,Turner BG,Weeks JC,Wolfe J. Looking beyond where children die: determinants and effects of planning a child's location of death. J Pain Symptom Manage 2008; 37:33-43. PubMed
  • Lannen PK,Wolfe J,Prigerson HG,Onelov E,Kreicbergs UC. Unresolved grief in a national sample of bereaved parents: impaired mental and physical health 4 to 9 years later. J Clin Oncol 2008; 26:5870-6. PubMed
  • Mack JW,Joffe S,Hilden JM,Watterson J,Moore C,Weeks JC,Wolfe J. Parents' views of cancer-directed therapy for children with no realistic chance for cure. J Clin Oncol 2008; 26:4759-64. PubMed
  • Hon JK, Chow A, Abdalla S, Wolfe JH. Myeloproliferative disorder as the cause of peripheral ischemia in a young patient. Ann Vasc Surg 2008; 22:456-8. PubMed
  • Wolfe J, Hammel JF, Edwards KE, Duncan J, Comeau M, Breyer J, Aldridge SA, Grier HE, Berde C, Dussel V, Weeks JC. Easing of suffering in children with cancer at the end of life: is care changing? J Clin Oncol 2008; 26:1717-23. PubMed
  • Edwards KE, Neville BA, Cook EF Jr, Aldridge SH, Dussel V, Wolfe J. Understanding of prognosis and goals of care among couples whose child died of cancer. J Clin Oncol 2008; 26:1310-5. PubMed
  • Liben S, Papadatou D, Wolfe J. Paediatric palliative care: challenges and emerging ideas. Lancet 2007; 371:852-64. PubMed
  • Mack JW, Wolfe J, Cook EF, Grier HE, Cleary PD, Weeks JC. Hope and prognostic disclosure. J Clin Oncol 2007; 25:5636-42. PubMed
  • Kreicbergs UC, Lannen P, Onelov E, Wolfe J. Parental grief after losing a child to cancer: impact of professional and social support on long-term outcomes. J Clin Oncol 2007; 25:3307-12. PubMed
  • Mack JW, Cook EF, Wolfe J, Grier HE, Cleary PD, Weeks JC. Understanding of prognosis among parents of children with cancer: parental optimism and the parent-physician interaction. J Clin Oncol 2007; 25:1357-62. PubMed
  • Mack JW, Wolfe J, Grier HE, Cleary PD, Weeks JC. Communication about prognosis between parents and physicians of children with cancer: parent preferences and the impact of prognostic information. J Clin Oncol 2006; 24:5265-70. PubMed
  • Wolfe JA. How the tobacco industry targets children. Am J Nurs 2006; 106:13. PubMed
  • Mack JW, Hilden JM, Watterson J, Moore C, Turner B, Grier HE, Weeks JC, Wolfe J. Parent and Physician Perspectives on Quality of Care at the End of Life in Children With Cancer. J Clin Oncol 2005; 23:9155-61. PubMed
  • Berde C, Wolfe J. Pain, anxiety, distress, and suffering: interrelated, but not interchangeable. J Pediatr 2003; 142:361-3. PubMed
  • Wolfe J, Friebert S, Hilden J. Caring for children with advanced cancer integrating palliative care. Pediatr Clin North Am 2002; 49:1043-62. PubMed
  • Wolfe J, Klar N, Grier HE, Duncan J, Salem-Schatz S, Emanuel EJ, Weeks JC. Understanding of prognosis among parents of children who died of cancer: impact on treatment goals and integration of palliative care. JAMA 2000; 284:2469-75. PubMed
  • Wolfe J, Grier HE, Klar N, Levin SB, Ellenbogen JM, Salem-Schatz S, Emanuel EJ, Weeks JC. Symptoms and suffering at the end of life in children with cancer. N Engl J Med 2000; 342:326-33. PubMed
  • Wolfe J, Fairclough DL, Clarridge BR, Daniels ER, Emanuel EJ. Stability of attitudes regarding physician-assisted suicide and euthanasia among oncology patients, physicians, and the general public. J Clin Oncol 1999; 17:1274. PubMed
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