Research

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Joanne  Wolfe, MD, MPH

Joanne Wolfe
Research Center:
Dana-Farber/Boston Children’s Cancer and Blood Disorders Center
Department:
Medicine Research
Division
Hematology/Oncology Research
Hospital Title:
Director, Pediatric Palliative Care; Division Chief, Pediatric Palliative Care Service, Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute
Academic Title:
Associate Professor of Pediatrics, Harvard Medical School
Research Focus Area:
Palliative care
Contact:
617-632-5286
Contact Via Email
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Research Overview

Joanne Wolfe's research focuses on palliative care. Through clinical trials, she is evaluating approaches to care that preserve hope and optimize quality of life and comfort. Her projects include:

A prospective longitudinal study observing a cohort of children with advanced cancer and their families. It is designed to delineate the quality of key elements of care by studying parent and physician perceptions about prognosis and treatment goals, symptoms, and quality of life in children.

An intervention that provides feedback on symptom and quality-of-life scores as a component of the routine care of children with advanced cancer. This feedback is provided by a computerized data collection system called Pediatric Quality of Life Evaluation of Symptoms Technology (PediQUEST). The system generates electronic mail notifications alerting providers to repeated high levels of symptom distress. This, in turn, may lead to better control of symptoms and result in less distress. Greater attention to quality of life also may stimulate parent and physician communication about prognosis and treatment goals and lead to earlier decision-making about palliative care outcomes.

About Joanne Wolfe

Dr. Wolfe received her MD from Harvard Medical School and her MPH from Harvard School of Public Health. She completed an internship, residency and chief residency in pediatrics at Boston Children's Hospital and a fellowship at Boston Children's Hospital and Dana-Farber Cancer Institute. She directs the Pediatric Advanced Care Team (PACT), a palliative care service at both BCH and the DFCI. PACT was a finalist for The Schwartz Center Compassionate Caregiver Award in 2010.

Publications

Publications powered by Harvard Catalyst Profiles
  1. Rosenberg AR, Bona K, Ketterl T, Wharton CM, Wolfe J, Baker KS. Intimacy, Substance Use, and Communication Needs During Cancer Therapy: A Report From the "Resilience in Adolescents and Young Adults" Study. J Adolesc Health. 2016 Oct 18.
  2. Rosenberg AR, Wolfe J, Wiener L, Lyon M, Feudtner C. Ethics, Emotions, and the Skills of Talking About Progressing Disease With Terminally Ill Adolescents: A Review. JAMA Pediatr. 2016 Oct 17.
  3. Rosenberg AR, Orellana L, Ullrich C, Kang T, Geyer JR, Feudtner C, Dussel V, Wolfe J. Quality of Life in Children With Advanced Cancer: A Report From the PediQUEST Study. J Pain Symptom Manage. 2016 Aug; 52(2):243-53.
  4. Kirch R, Reaman G, Feudtner C, Wiener L, Schwartz LA, Sung L, Wolfe J. Advancing a comprehensive cancer care agenda for children and their families: Institute of Medicine Workshop highlights and next steps. CA Cancer J Clin. 2016 Sep; 66(5):398-407.
  5. Bona K, Blonquist TM, Neuberg DS, Silverman LB, Wolfe J. Impact of Socioeconomic Status on Timing of Relapse and Overall Survival for Children Treated on Dana-Farber Cancer Institute ALL Consortium Protocols (2000-2010). Pediatr Blood Cancer. 2016 Jun; 63(6):1012-8.
  6. Ullrich CK, Lehmann L, London WB, Guo D, Sridharan M, Koch R, Wolfe J. End-of-Life Care Patterns Associated with Pediatric Palliative Care among Children Who Underwent Hematopoietic Stem Cell Transplant. Biol Blood Marrow Transplant. 2016 Jun; 22(6):1049-55.
  7. Odejide OO, Cronin AM, Condron N, Earle CC, Wolfe J, Abel GA. Timeliness of End-of-Life Discussions for Blood Cancers: A National Survey of Hematologic Oncologists. JAMA Intern Med. 2016 Feb; 176(2):263-5.
  8. Feraco AM, Brand SR, Mack JW, Kesselheim JC, Block SD, Wolfe J. Communication Skills Training in Pediatric Oncology: Moving Beyond Role Modeling. Pediatr Blood Cancer. 2016 Jun; 63(6):966-72.
  9. Widger K, Friedrichsdorf S, Wolfe J, Liben S, Pole JD, Bouffet E, Greenberg M, Husain A, Siden H, Whitlock JA, Rapoport A. Protocol: Evaluating the impact of a nation-wide train-the-trainer educational initiative to enhance the quality of palliative care for children with cancer. BMC Palliat Care. 2016 Jan 27; 15:12.
  10. Rosenberg AR, Bona K, Wharton CM, Bradford M, Shaffer ML, Wolfe J, Baker KS. Adolescent and Young Adult Patient Engagement and Participation in Survey-Based Research: A Report From the "Resilience in Adolescents and Young Adults With Cancer" Study. Pediatr Blood Cancer. 2016 Apr; 63(4):734-6.
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  12. Weaver MS, Heinze KE, Kelly KP, Wiener L, Casey RL, Bell CJ, Wolfe J, Garee AM, Watson A, Hinds PS. Palliative Care as a Standard of Care in Pediatric Oncology. Pediatr Blood Cancer. 2015 Dec; 62 Suppl 5:S829-33.
  13. Bona K, London WB, Guo D, Frank DA, Wolfe J. Trajectory of Material Hardship and Income Poverty in Families of Children Undergoing Chemotherapy: A Prospective Cohort Study. Pediatr Blood Cancer. 2016 Jan; 63(1):105-11.
  14. Ullrich CK, Rodday AM, Bingen K, Kupst MJ, Patel SK, Syrjala KL, Harris LL, Recklitis CJ, Schwartz L, Davies S, Guinan EC, Chang G, Wolfe J, Parsons SK. Parent Outlook: How Parents View the Road Ahead as They Embark on Hematopoietic Stem Cell Transplantation for Their Child. Biol Blood Marrow Transplant. 2016 Jan; 22(1):104-11.
  15. Wiener L, Feudtner C, Hinds P, Wolfe J, Mack J. Deeper Conversations Need Not Wait Until the End. J Clin Oncol. 2015 Nov 20; 33(33):3974.
  16. Madden K, Wolfe J, Collura C. Pediatric Palliative Care in the Intensive Care Unit. Crit Care Nurs Clin North Am. 2015 Sep; 27(3):341-54.
  17. 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 Aug; 167(2):467-70.e3.
  18. 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 Jun 10; 33(17):1928-35.
  19. 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 Aug; 62(8):1409-13.
  20. Rosenberg AR, Wolfe J. Authors' response to van der Geest et al. J Pain Symptom Manage. 2015 May; 49(5):e7-9.
  21. Balkin EM, Wolfe J, Ziniel SI, Lang P, Thiagarajan R, Dillis S, Fynn-Thompson F, Blume ED. Physician and parent perceptions of prognosis and end-of-life experience in children with advanced heart disease. J Palliat Med. 2015 Apr; 18(4):318-23.
  22. 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 Feb; 18(2):143-50.
  23. 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 Sep 20; 32(27):3005-11.
  24. Hauer JM, Wolfe J. Supportive and palliative care of children with metabolic and neurological diseases. Curr Opin Support Palliat Care. 2014 Sep; 8(3):296-302.
  25. Ullrich CK, Wolfe J. Caring for children living with life-threatening illness: a growing relationship between pediatric hospital medicine and pediatric palliative care. Pediatr Clin North Am. 2014 Aug; 61(4):xxi-xxiii.
  26. 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. 2015 Jan; 49(1):55-65.
  27. 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 Aug; 17(8):953-6.
  28. Blume ED, Balkin EM, Aiyagari R, Ziniel S, Beke DM, Thiagarajan R, Taylor L, Kulik T, Pituch K, Wolfe J. Parental perspectives on suffering and quality of life at end-of-life in children with advanced heart disease: an exploratory study*. Pediatr Crit Care Med. 2014 May; 15(4):336-42.
  29. 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 Apr 10; 32(11):1119-26.
  30. 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 May; 61(5):859-64.
  31. 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 Mar; 61(3):552-7.
  32. 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 Dec; 132(6):1063-70.
  33. Sanderson A, Zurakowski D, Wolfe J. Clinician perspectives regarding the do-not-resuscitate order. JAMA Pediatr. 2013 Oct; 167(10):954-8.
  34. 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 Sep; 16(9):1034-9.
  35. Kassam A, Wolfe J. Reply to A.H. Kamal. J Clin Oncol. 2013 Aug 20; 31(24):3047-8.
  36. 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 Mar; 47(3):594-603.
  37. 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 Jun; 167(6):537-43.
  38. Rosenberg AR, Baker KS, Syrjala KL, Back AL, Wolfe J. Promoting resilience among parents and caregivers of children with cancer. J Palliat Med. 2013 Jun; 16(6):645-52.
  39. Waldman E, Wolfe J. High symptom burden in children with cancer and high parental satisfaction: why the disconnect? Ann Palliat Med. 2013 Apr; 2(2):54-5.
  40. Waldman E, Wolfe J. Palliative care for children with cancer. Nat Rev Clin Oncol. 2013 Feb; 10(2):100-7.
  41. 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 Mar 1; 31(7):910-5.
  42. 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 Nov; 15(11):1218-21.
  43. 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. 2012; 28(4):274-81.
  44. Rosenberg AR, Baker KS, Syrjala K, Wolfe J. Systematic review of psychosocial morbidities among bereaved parents of children with cancer. Pediatr Blood Cancer. 2012 Apr; 58(4):503-12.
  45. Feudtner C, Kang TI, Hexem KR, Friedrichsdorf SJ, Osenga K, Siden H, Friebert SE, Hays RM, Dussel V, Wolfe J. Pediatric palliative care patients: a prospective multicenter cohort study. Pediatrics. 2011 Jun; 127(6):1094-101.
  46. Wolfe J. Recognizing a global need for high quality pediatric palliative care. Pediatr Blood Cancer. 2011 Aug; 57(2):187-8.
  47. Bona K, Bates J, Wolfe J. Successful implementation of a novel state-funded pediatric palliative care program (413-B). J Pain Symptom Manage. 2011 Jan; 41(1):230-1.
  48. Wolfe J, Dussel V, Neville B, Cook E, Chen K, Kang T, Geyer R, Ullrich C, Feudtner C, Weeks J. Longitudinal Assessment of Symptom Distress in Children with Advanced Cancer: Report of the First 20 Weeks in the Pediatric Quality-of-Life Evaluation of Symptoms Technology (PediQUEST) Study (311-A). J Pain Symptom Manage. 2011 Jan; 41(1):187.
  49. Dussel V, Neville B, Chen K, Cook E, Geyer R, Kang T, Ullrich C, Feudtner C, Weeks J, Wolfe J. Routine Feedback of Patient-Reported Distress in Children With Advanced Cancer: Provider and Family Satisfaction With the Pediatric Quality of Life and Evaluation of Symptoms Technology (PediQUEST) System (311-B). J Pain Symptom Manage. 2011 Jan; 41(1):187-8.
  50. 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 Mar 10; 29(8):1007-13.
  51. 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 Oct; 40(4):483-94.
  52. Lannen P, Wolfe J, Mack J, Onelov E, Nyberg U, Kreicbergs U. Absorbing information about a child's incurable cancer. Oncology. 2010; 78(3-4):259-66.
  53. 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 May 13; 115(19):3879-85.
  54. 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 Mar; 164(3):231-7.
  55. 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 Jan 18; 192(2):71-5.
  56. 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 Nov; 45(11):656-9.
  57. 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 Jun; 163(6):519-24.
  58. 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 Dec 20; 26(36):5870-6.
  59. 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 Oct 10; 26(29):4759-64.
  60. 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. 2009 Jan; 37(1):33-43.
  61. Hechler T, Blankenburg M, Friedrichsdorf SJ, Garske D, Hübner B, Menke A, Wamsler C, Wolfe J, Zernikow B. Parents' perspective on symptoms, quality of life, characteristics of death and end-of-life decisions for children dying from cancer. Klin Padiatr. 2008 May-Jun; 220(3):166-74.
  62. 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 Apr 1; 26(10):1717-23.
  63. Edwards KE, Neville BA, Cook EF, Aldridge SH, Dussel V, Wolfe J. Understanding of prognosis and goals of care among couples whose child died of cancer. J Clin Oncol. 2008 Mar 10; 26(8):1310-5.
  64. Liben S, Papadatou D, Wolfe J. Paediatric palliative care: challenges and emerging ideas. Lancet. 2008 Mar 8; 371(9615):852-64.
  65. Lannen P, Wolfe J, Prigerson HG, Onelöv E, Kreicbergs UC. . Unresolved Grief in a National Sample of Bereaved Parents. Journal of Clinical Oncology. In Press. 2008.
  66. Mack JW, Wolfe J, Cook EF, Grier HE, Cleary PD, Weeks JC. Hope and prognostic disclosure. J Clin Oncol. 2007 Dec 10; 25(35):5636-42.
  67. Duncan J, Spengler E, Wolfe J. Providing pediatric palliative care: PACT in action. MCN Am J Matern Child Nurs. 2007 Sep-Oct; 32(5):279-87.
  68. 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 Aug 1; 25(22):3307-12.
  69. 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 Apr 10; 25(11):1357-62.
  70. 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 Nov 20; 24(33):5265-70.
  71. Sullivan AM, Lakoma MD, Billings JA, Peters AS, Block SD. Creating enduring change: demonstrating the long-term impact of a faculty development program in palliative care. J Gen Intern Med. 2006 Sep; 21(9):907-14.
  72. Mack JW, Wolfe J. Early integration of pediatric palliative care: for some children, palliative care starts at diagnosis. Curr Opin Pediatr. 2006 Feb; 18(1):10-4.
  73. 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 Dec 20; 23(36):9155-61.
  74. Sullivan AM, Lakoma MD, Billings JA, Peters AS, Block SD. Teaching and learning end-of-life care: evaluation of a faculty development program in palliative care. Acad Med. 2005 Jul; 80(7):657-68.
  75. Hinds PS, Schum L, Baker JN, Wolfe J. Key factors affecting dying children and their families. J Palliat Med. 2005; 8 Suppl 1:S70-8.
  76. Hurwitz CA, Duncan J, Wolfe J. Caring for the child with cancer at the close of life: "there are people who make it, and I'm hoping I'm one of them". JAMA. 2004 Nov 3; 292(17):2141-9.
  77. Berde C, Wolfe J. Pain, anxiety, distress, and suffering: interrelated, but not interchangeable. J Pediatr. 2003 Apr; 142(4):361-3.
  78. Wolfe J, Friebert S, Hilden J. Caring for children with advanced cancer integrating palliative care. Pediatr Clin North Am. 2002 Oct; 49(5):1043-62.
  79. 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 Nov 15; 284(19):2469-75.
  80. 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 Feb 3; 342(5):326-33.
  81. Wolfe J. Suffering in children at the end of life: recognizing an ethical duty to palliate. J Clin Ethics. 2000; 11(2):157-63.
  82. 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 Apr; 17(4):1274.
  83. Ruth AB, Wolfe J. An 11-year-old boy with severe liver disease, cyanosis, and clubbing. Curr Opin Pediatr. 1994 Jun; 6(3):280-5.
  84. 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 May 20; 29(15):2085-90.
  85. Morell E, Wolfe J, Scheurer M, Thiagarajan R, Morin C, Beke DM, Smoot L, Cheng H, Gauvreau K, Blume ED. Patterns of care at end of life in children with advanced heart disease. Arch Pediatr Adolesc Med. 2012 Aug; 166(8):745-8.
  86. 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 Jun; 49(6):1059-69.
  87. 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 Feb; 21(2):312-8.
  88. Ananth P, Melvin P, Feudtner C, Wolfe J, Berry JG. Hospital Use in the Last Year of Life for Children With Life-Threatening Complex Chronic Conditions. Pediatrics. 2015 Nov; 136(5):938-46.
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