Research Overview

Dr. Mack's research focuses on communication between physicians and parents of children with cancer. Specific interests include prognosis communication, decision-making at the end of life, and the ways that communication impacts adjustment to illness.

Current projects include a longitudinal cohort study about prognosis communication between parents and physicians of children with cancer. This study is underway at Dana-Farber Children's Cancer Center and the Children's Hospital of Philadelphia. Through this study Dr Mack aims to evaluate parents' understanding of prognosis, the extent to which they want prognostic information about their children, and the emotional impact of prognostic information. In addition, she is assessing the ways that information needs and knowledge change over time in the first year after a cancer diagnosis.

A second project involves assessment of the ways that communication about relapsed cancer affects parents' sense of hope for their children. Through audiotaped conversations between parents and physicians and in-depth parent interviews, Dr Mack will assess parents' expectations for their children's prognoses as well as their hopes.

Despite evidence that patients and parents want prognostic information, physicians are often reluctant to provide such information because of worries about its harms, including distress and loss of hope. Yet this information may be instrumental in helping parents to make appropriate decisions for their child's care. The ultimate goal of Dr. Mack's work is to help parents to make value-driven decisions for their children with cancer.

Research Background

Jenny Mack is a pediatric oncologist and outcomes researcher at the Dana-Farber Cancer Institute and Boston Children's Hospital. After graduating from Harvard Medical School, she completed residency training in Pediatrics at Boston Children's Hospital followed by fellowship training in Pediatric Hematology/Oncology and Pediatric Palliative Care at the Dana-Farber/ Children's Hospital Cancer Center. She also completed the Harvard Pediatric Health Services Research Fellowship and received a Masters degree in Public Health from the Harvard School of Public Health in 2005.

 

Education

Medical School

Harvard Medical School
1998 Boston MA

Internship

Pediatrics Harvard Medical School
1999 Boston MA

Residency

Pediatrics Boston Children's Hospital/Boston Medical Center
2001 Boston MA

Fellowship

Pediatric Hematology-Oncology & Pediatric Palliative Care Boston Children's Hospital/Dana Farber Cancer Institute
2004 Boston MA

Publications

  1. Preferred and Actual Location of Death in Adolescents and Young Adults With Cancer. JAMA Netw Open. 2025 Jan 02; 8(1):e2454000. View Abstract
  2. Evolution in Documented Goals of Care at End of Life for Adolescents and Younger Adults With Cancer. JAMA Netw Open. 2024 Dec 02; 7(12):e2450489. View Abstract
  3. Definition of Palliative Surgery in Cancer Care: A Systematic Review. J Surg Oncol. 2024 Nov 28. View Abstract
  4. Applying theories, models, and frameworks to help genetic counselors and students achieve clinical and professional goals. J Genet Couns. 2025 Apr; 34(2):e1988. View Abstract
  5. Explanatory models in real-world clinical interactions at a pediatric cancer center in Guatemala. PLOS Glob Public Health. 2024; 4(10):e0003813. View Abstract
  6. Peace, equanimity and acceptance in the cancer experience: validation of the German version (PEACE-G) and associations with mental health, health-related quality of life and psychological constructs. BMC Psychol. 2024 Sep 27; 12(1):507. View Abstract
  7. Functions of patient- and family-centered pediatric cancer communication in Pakistan. Front Oncol. 2024; 14:1393908. View Abstract
  8. Patient, Parent, and Oncologist Perspectives and Recommendations on the Right Way to Talk About Prognosis in Advanced Childhood Cancer. JCO Oncol Pract. 2025 Apr; 21(4):552-560. View Abstract
  9. Preferred and Actual Places of Death Among Patients with Advanced Cancer: A Single-centre Cohort Study in Japan. Indian J Palliat Care. 2024 Jul-Sep; 30(3):268-274. View Abstract
  10. Overcoming Systemic Barriers to Make Patient-Partnered Research a Reality. J Clin Oncol. 2024 Dec; 42(34):4018-4022. View Abstract
  11. Language to Support Dignity for Children With Advanced Cancer and Their Families. Pediatrics. 2024 Aug 01; 154(2). View Abstract
  12. Parent-provider communication dynamics during the pediatric oncology diagnostic process in Guatemala: A qualitative study. Pediatr Blood Cancer. 2024 Oct; 71(10):e31227. View Abstract
  13. Use of cancer-directed therapy at the end of life among adolescents and young adults. J Natl Cancer Inst. 2024 Jul 01; 116(7):1080-1086. View Abstract
  14. "A very difficult conversation": Challenges and opportunities for improvement in pediatric oncology clinician communication about late effects. Pediatr Blood Cancer. 2024 Aug; 71(8):e31093. View Abstract
  15. Stigma in Pediatric Cancer: An Exploratory Study of Osteosarcoma and Retinoblastoma in Guatemala, Jordan, and Zimbabwe. JCO Glob Oncol. 2024 Jun; 10:e2400017. View Abstract
  16. Parent and oncologist perspectives on prognostic disclosure in advanced childhood cancer: communication pearls and pitfalls. Support Care Cancer. 2024 May 13; 32(6):341. View Abstract
  17. Psychosocial and supportive care concerns of young women living with advanced breast cancer: baseline findings from a prospective virtual support intervention study. Support Care Cancer. 2024 May 10; 32(6):336. View Abstract
  18. Who gets to die at home? Race and disease-related cause of death impacts young adults' place of death. Evid Based Nurs. 2024 Mar 28; 27(2):79. View Abstract
  19. Ethical Tensions in the Role of the Medical Interpreter. Narrat Inq Bioeth. 2024; 14(3):189-193. View Abstract
  20. Factors influencing parents' choice of palliative treatment goals for children with relapsed or refractory neuroblastoma: A multi-site longitudinal survey study. Cancer. 2024 04 01; 130(7):1101-1111. View Abstract
  21. What Constitutes Quality of Life? Perspectives of Adolescents and Young Adults With Advanced Cancer. J Natl Compr Canc Netw. 2023 12; 21(12):1243-1250. View Abstract
  22. Quality of End-of-Life Care Among Adolescents and Young Adults With Cancer. J Clin Oncol. 2024 Feb 20; 42(6):621-629. View Abstract
  23. A helping hand: The impact of a central line insertion support team. Am J Infect Control. 2023 12; 51(12):1438-1440. View Abstract
  24. Agreement and disagreement between child-caregiver symptom and function reports in pediatric oncology. Pediatr Blood Cancer. 2024 Jan; 71(1):e30710. View Abstract
  25. CritCom: assessment of quality of interdisciplinary communication around deterioration in pediatric oncologic patients. Front Oncol. 2023; 13:1207578. View Abstract
  26. Designing and validating novel communication measures for pediatric, adolescent, and young adult oncology care and research: The PedCOM measures. Pediatr Blood Cancer. 2023 Dec; 70(12):e30685. View Abstract
  27. Oncology Clinicians' Perspectives on Online Patient Portal Use in Pediatric and Adolescent Cancer. JCO Clin Cancer Inform. 2023 09; 7:e2300124. View Abstract
  28. Barriers and Facilitators of Quality Family-Centered Communication in Pakistan. JCO Glob Oncol. 2023 Sep; 9:e2300178. View Abstract
  29. Discussions About Goals of Care and Advance Care Planning Among Adolescents and Young Adults With Cancer Approaching the End of Life. J Clin Oncol. 2023 10 20; 41(30):4739-4746. View Abstract
  30. Patient, Caregiver, and Clinician Perspectives on Core Components of Therapeutic Alliance for Adolescents and Young Adults With Advanced Cancer: A Qualitative Study. JAMA Netw Open. 2023 08 01; 6(8):e2328153. View Abstract
  31. Impact of the COVID-19 pandemic on pediatric faculty: a report from nine academic institutions. Pediatr Res. 2024 Feb; 95(3):775-784. View Abstract
  32. Identifying contributors to disparities in patient access of online medical records: examining the role of clinician encouragement. JAMIA Open. 2023 Oct; 6(3):ooad049. View Abstract
  33. A new measure for multi-professional medical team communication: design and methodology for multilingual measurement development. Front Pediatr. 2023; 11:1127633. View Abstract
  34. A single-institution pediatric and young adult interventional oncology collaborative: Novel therapeutic options for relapsed/refractory solid tumors. Cancer Med. 2023 06; 12(12):13300-13308. View Abstract
  35. Prognostic awareness in Japanese patients with advanced cancer: a follow-up cohort study. Jpn J Clin Oncol. 2023 Apr 29; 53(5):410-418. View Abstract
  36. A multi-disciplinary team approach to pediatric malignant mandibular tumors. Int J Pediatr Otorhinolaryngol. 2023 May; 168:111547. View Abstract
  37. Application of Instrumental Variable Analysis in Pediatric End-of-Life Research: A Case Study. West J Nurs Res. 2023 06; 45(6):571-580. View Abstract
  38. Quality Indicators for Adolescents and Young Adults With Advanced Cancer: A Modified Delphi Process With Patients, Family Members, and Clinicians. J Pain Symptom Manage. 2023 07; 66(1):54-61. View Abstract
  39. Understanding hope at diagnosis: A study among Guatemalan parents of children with cancer. Cancer Med. 2023 04; 12(8):9966-9975. View Abstract
  40. The Day One Talk, 20 Years Later: What Have We Learned? JCO Oncol Pract. 2023 04; 19(4):164-166. View Abstract
  41. Interdisciplinary care of pediatric oncology patients: A survey of clinicians in Central America and the Caribbean. Pediatr Blood Cancer. 2023 05; 70(5):e30244. View Abstract
  42. "There's no playbook for when your kid has cancer": Desired elements of an electronic resource to support pediatric cancer communication. Pediatr Blood Cancer. 2023 03; 70(3):e30198. View Abstract
  43. Advice to Clinicians on Communication from Adolescents and Young Adults with Cancer and Parents of Children with Cancer. Children (Basel). 2022 Dec 21; 10(1). View Abstract
  44. Profiles of Symptom Suffering and Functioning in Children and Adolescents Receiving Chemotherapy. Cancer Nurs. 2023 Mar-Apr 01; 46(2):E129-E137. View Abstract
  45. Evaluating the cost-effectiveness of pediatric concurrent versus standard hospice care. Nurs Econ. 2022 Nov-Dec; 40(6):297-304. View Abstract
  46. Oncologist approaches to communicating uncertain disease status in pediatric cancer: a qualitative study. BMC Cancer. 2022 Oct 31; 22(1):1109. View Abstract
  47. "The simple life experiences that every other human gets": Desire for normalcy among adolescents and young adults with advanced cancer. Pediatr Blood Cancer. 2023 01; 70(1):e30035. View Abstract
  48. Conceptualizing the Value of Pediatric Concurrent Hospice Care. J Hosp Palliat Nurs. 2023 02 01; 25(1):31-38. View Abstract
  49. Capturing the young child's reports of cancer treatment tolerability: Does our practice reflect an assumption that they cannot report? Pediatr Blood Cancer. 2023 01; 70(1):e30028. View Abstract
  50. Longitudinal use of patient reported outcomes in pediatric leukemia and lymphoma reveals clinically relevant symptomatic adverse events. Pediatr Blood Cancer. 2022 12; 69(12):e29986. View Abstract
  51. "Seed Planting" As an Approach for Longitudinal Prognostic Disclosure in Pediatric Cancer: A Case Series. J Palliat Med. 2023 03; 26(3):447-451. View Abstract
  52. Development and Adaptation of a Patient-Centered Communication Survey for Parents of Children With Cancer in Guatemala. JCO Glob Oncol. 2022 09; 8:e2200124. View Abstract
  53. Change in the Parent-Clinician Relationship Throughout the First Year of Treatment in Pediatric Oncology. JAMA Netw Open. 2022 09 01; 5(9):e2230503. View Abstract
  54. Navigating prognostic communication when children with poor-prognosis cancer experience prolonged disease stability. Pediatr Blood Cancer. 2023 01; 70(1):e29920. View Abstract
  55. Patient, Family, and Clinician Perspectives on Location of Death for Adolescents and Young Adults With Cancer. JCO Oncol Pract. 2022 10; 18(10):e1621-e1629. View Abstract
  56. Mismatch between Pediatric Oncologists' Private and Parent-Facing Prognostic Communication: Communication Patterns Used to Soften Prognostic Disclosure. J Palliat Med. 2023 02; 26(2):210-219. View Abstract
  57. Cancer treatment decision-making among parents of paediatric oncology patients in Guatemala: a mixed-methods study. BMJ Open. 2022 08 11; 12(8):e057350. View Abstract
  58. Validity and reliability of the Japanese version of the Peace, Equanimity, and Acceptance in the Cancer Experience (PEACE) questionnaire. Palliat Support Care. 2022 08; 20(4):549-555. View Abstract
  59. Thinking globally to improve care locally: A Delphi study protocol to achieve international clinical consensus on best-practice end-of-life communication with adolescents and young adults with cancer. PLoS One. 2022; 17(7):e0270797. View Abstract
  60. Silence in Conversations About Advancing Pediatric Cancer. Front Oncol. 2022; 12:894586. View Abstract
  61. Co-management of communication and care in adolescent and young adult oncology. Pediatr Blood Cancer. 2022 10; 69(10):e29813. View Abstract
  62. The Art of Saying Nothing. Pediatrics. 2022 Jun 01; 149(6). View Abstract
  63. Factors Affecting Hospice Use Among Adolescents and Young Adult Cancer Patients. J Adolesc Young Adult Oncol. 2023 04; 12(2):151-158. View Abstract
  64. Pediatric Concurrent Hospice Care: Cost Implications of a Hybrid Payment Model. Am J Hosp Palliat Care. 2022 Dec; 39(12):1436-1442. View Abstract
  65. A Framework for Promoting Diversity, Equity, and Inclusion in Genetics and Genomics Research. JAMA Health Forum. 2022 04; 3(4). View Abstract
  66. Lack of Concordance in Symptomatic Adverse Event Reporting by Children, Clinicians, and Caregivers: Implications for Cancer Clinical Trials. J Clin Oncol. 2022 05 20; 40(15):1623-1634. View Abstract
  67. Patterns of Healthcare Services Among Children With Advanced Cancer in Concurrent Hospice Care. Cancer Nurs. 2022 Nov-Dec 01; 45(6):E843-E848. View Abstract
  68. A National Study to Compare Effective Management of Constipation in Children Receiving Concurrent Versus Standard Hospice Care. J Hosp Palliat Nurs. 2022 02 01; 24(1):70-77. View Abstract
  69. Interdependent functions of communication with adolescents and young adults in oncology. Pediatr Blood Cancer. 2022 04; 69(4):e29588. View Abstract
  70. Health Literacy and Clinical Outcomes Following Hematopoietic Stem-Cell Transplantation. JCO Oncol Pract. 2022 06; 18(6):e857-e868. View Abstract
  71. Missing Voices: Lessons Learned from Nonparticipating Caregivers in Palliative Care Research. J Palliat Med. 2022 03; 25(3):455-460. View Abstract
  72. Racial and ethnic disparities in communication study enrollment for young people with cancer: A descriptive analysis of the literature. Patient Educ Couns. 2022 07; 105(7):2067-2073. View Abstract
  73. Bereaved Caregivers Perspectives of Negative Communication Experiences Near the End of Life for Adolescents and Young Adults with Cancer. J Adolesc Young Adult Oncol. 2022 10; 11(5):498-505. View Abstract
  74. Effectiveness of Pediatric Concurrent Hospice Care to Improve Continuity of Care. Am J Hosp Palliat Care. 2022 Oct; 39(10):1129-1136. View Abstract
  75. Early parental knowledge of late effect risks in children with cancer. Pediatr Blood Cancer. 2022 02; 69(2):e29473. View Abstract
  76. Acceptable, hopeful, and useful: development and mixed-method evaluation of an educational tool about reproductive options for people with sickle cell disease or trait. J Assist Reprod Genet. 2022 Jan; 39(1):183-193. View Abstract
  77. Parent and Clinician Perspectives on Challenging Parent-Clinician Relationships in Pediatric Oncology. JAMA Netw Open. 2021 11 01; 4(11):e2132138. View Abstract
  78. Multilevel barriers and facilitators of communication in pediatric oncology: A systematic review. Pediatr Blood Cancer. 2022 01; 69(1):e29405. View Abstract
  79. Thinking ahead: Parents' worries about late effects of childhood cancer treatment. Pediatr Blood Cancer. 2021 12; 68(12):e29335. View Abstract
  80. Communication Priorities and Experiences of Caregivers of Children With Cancer in Guatemala. JCO Glob Oncol. 2021 09; 7:1529-1536. View Abstract
  81. Broaching goals-of-care conversations in advancing pediatric cancer. Pediatr Blood Cancer. 2021 10; 68(10):e29270. View Abstract
  82. Patient, Family, and Clinician Perspectives on End-of-Life Care Quality Domains and Candidate Indicators for Adolescents and Young Adults With Cancer. JAMA Netw Open. 2021 08 02; 4(8):e2121888. View Abstract
  83. Facilitators Associated With Building and Sustaining Therapeutic Alliance in Advanced Pediatric Cancer. JAMA Netw Open. 2021 08 02; 4(8):e2120925. View Abstract
  84. Communication around palliative care principles and advance care planning between oncologists, children with advancing cancer and families. Br J Cancer. 2021 10; 125(8):1089-1099. View Abstract
  85. Who is coordinating pediatric concurrent hospice care? J Pain Symptom Manage. 2021 Nov; 62(5):e1-e4. View Abstract
  86. A Reliability Generalization Meta-Analysis of 17 Patient-Reported Outcome Measures for Positive Psychosocial Constructs in Children, Adolescents, and Young Adults with Cancer. J Adolesc Young Adult Oncol. 2022 04; 11(2):163-172. View Abstract
  87. Clinicians' Perspectives on the Functions of Communication in Pediatric Oncology. J Palliat Med. 2021 09; 24(10):1545-1549. View Abstract
  88. Patients, caregivers, and clinicians differ in performance status ratings: Implications for pediatric cancer clinical trials. Cancer. 2021 10 01; 127(19):3664-3670. View Abstract
  89. Factors related to specialized palliative care use and aggressive care at end of life in Japanese patients with advanced solid cancers: a cohort study. Support Care Cancer. 2021 Dec; 29(12):7805-7813. View Abstract
  90. A National Profile of Children Receiving Pediatric Concurrent Hospice Care, 2011 to 2013. J Hosp Palliat Nurs. 2021 06 01; 23(3):214-220. View Abstract
  91. Differences in characteristics of children with cancer who receive standard versus concurrent hospice care. Pediatr Blood Cancer. 2021 09; 68(9):e29106. View Abstract
  92. Evaluation of Patient-Reported Outcome Measures of Positive Psychosocial Constructs in Children and Adolescent/Young Adults with Cancer: A Systematic Review of Measurement Properties. J Adolesc Young Adult Oncol. 2022 02; 11(1):78-94. View Abstract
  93. Conflicting goals and obligations: Tensions affecting communication in pediatric oncology. Patient Educ Couns. 2022 01; 105(1):56-61. View Abstract
  94. Prognostic Communication Between Oncologists and Parents of Children With Advanced Cancer. Pediatrics. 2021 06; 147(6). View Abstract
  95. The evolution of parents' beliefs about childhood cancer during diagnostic communication: a qualitative study in Guatemala. BMJ Glob Health. 2021 05; 6(5). View Abstract
  96. "What Matters to Me": What pediatric stem cell transplant patients want their providers to know. J Psychosoc Oncol. 2021; 39(4):586-593. View Abstract
  97. "Don't be afraid to speak up": Communication advice from parents and clinicians of children with cancer. Pediatr Blood Cancer. 2021 08; 68(8):e29052. View Abstract
  98. Assume It Will Break: Parental Perspectives on Negative Communication Experiences in Pediatric Oncology. JCO Oncol Pract. 2021 06; 17(6):e859-e871. View Abstract
  99. Medical complexity and concurrent hospice care: A national study of Medicaid children from 2011 to 2013. J Spec Pediatr Nurs. 2021 10; 26(4):e12333. View Abstract
  100. Caregiver Reported Quality of End-of-Life Care of Adolescent and Young Adult Decedents With Cancer. J Palliat Care. 2022 Apr; 37(2):87-92. View Abstract
  101. Multilevel barriers to communication in pediatric oncology: Clinicians' perspectives. Cancer. 2021 06 15; 127(12):2130-2138. View Abstract
  102. Barriers to Optimal End-of-Life Care for Adolescents and Young Adults With Cancer: Bereaved Caregiver Perspectives. J Natl Compr Canc Netw. 2021 May; 19(5):528-533. View Abstract
  103. Parental views on communication between children and clinicians in pediatric oncology: a qualitative study. Support Care Cancer. 2021 Sep; 29(9):4957-4968. View Abstract
  104. Patients' understanding of communication about palliative care and health condition in Japanese patients with unresectable or recurrent cancer: a cross-sectional survey. Ann Palliat Med. 2021 Mar; 10(3):2650-2661. View Abstract
  105. Identification of Evidence for Key Positive Psychological Constructs in Pediatric and Adolescent/Young Adult Patients with Cancer: A Scoping Review. J Adolesc Young Adult Oncol. 2021 06; 10(3):247-259. View Abstract
  106. Validation of the caregiver Pediatric Patient-Reported Outcomes Version of the Common Terminology Criteria for Adverse Events measure. Cancer. 2021 05 01; 127(9):1483-1494. View Abstract
  107. Interdisciplinary care of pediatric oncology patients in Central America and the Caribbean. Cancer. 2021 07 15; 127(14):2579-2586. View Abstract
  108. Agreement Between Child Self-report and Caregiver-Proxy Report for Symptoms and Functioning of Children Undergoing Cancer Treatment. JAMA Pediatr. 2020 11 01; 174(11):e202861. View Abstract
  109. Validity and Reliability of the Pediatric Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events. J Natl Cancer Inst. 2020 11 01; 112(11):1143-1152. View Abstract
  110. Alveolar rhabdomyosarcoma presenting as a pleural effusion: An atypical presentation of a malignancy. Pediatr Pulmonol. 2020 12; 55(12):3231-3233. View Abstract
  111. Subjective Toxicity Profiles of Children in Treatment for Cancer: A New Guide to Supportive Care? J Pain Symptom Manage. 2021 06; 61(6):1188-1195.e2. View Abstract
  112. Characteristics of uncertainty in advanced pediatric cancer conversations. Patient Educ Couns. 2021 05; 104(5):1066-1074. View Abstract
  113. Variation In State Medicaid Implementation Of The ACA: The Case Of Concurrent Care For Children. Health Aff (Millwood). 2020 10; 39(10):1770-1775. View Abstract
  114. Pediatric cancer communication in low- and middle-income countries: A scoping review. Cancer. 2020 12 01; 126(23):5030-5039. View Abstract
  115. Communication in Pediatric Oncology: A Qualitative Study. Pediatrics. 2020 09; 146(3). View Abstract
  116. Care experiences that foster trust between parents and physicians of children with cancer. Pediatr Blood Cancer. 2020 11; 67(11):e28399. View Abstract
  117. Exercise and Well-being in Adult Survivors of Childhood Cancer-Time for Interventions. JAMA Oncol. 2020 08 01; 6(8):1170-1171. View Abstract
  118. Role of Surgery in Rhabdomyosarcoma of the Head and Neck in Children. Laryngoscope. 2021 03; 131(3):E984-E992. View Abstract
  119. The use of interval-compressed chemotherapy with the addition of vincristine, irinotecan, and temozolomide for pediatric patients with newly diagnosed desmoplastic small round cell tumor. Pediatr Blood Cancer. 2020 10; 67(10):e28559. View Abstract
  120. Impact of cancer on school, work, and financial independence among adolescents and young adults. Cancer. 2020 10 01; 126(19):4400-4406. View Abstract
  121. Qualitative Study of Pediatric Early Warning Systems' Impact on Interdisciplinary Communication in Two Pediatric Oncology Hospitals With Varying Resources. JCO Glob Oncol. 2020 07; 6:1079-1086. View Abstract
  122. Pediatric Concurrent Hospice Care: A Scoping Review and Directions for Future Nursing Research. J Hosp Palliat Nurs. 2020 06; 22(3):238-245. View Abstract
  123. Early information needs of adolescents and young adults about late effects of cancer treatment. Cancer. 2020 07 15; 126(14):3281-3288. View Abstract
  124. Racial and Ethnic Differences in Communication and Care for Children With Advanced Cancer. J Pain Symptom Manage. 2020 10; 60(4):782-789. View Abstract
  125. Parental Considerations Regarding Cure and Late Effects for Children With Cancer. Pediatrics. 2020 05; 145(5). View Abstract
  126. Humour and laughing in patients with prolonged incurable cancer: an ethnographic study in a comprehensive cancer centre. Qual Life Res. 2020 Sep; 29(9):2425-2434. View Abstract
  127. Psychosocial care for children receiving chimeric antigen receptor (CAR) T-cell therapy. Pediatr Blood Cancer. 2020 05; 67(5):e28249. View Abstract
  128. Oncologists' Communication and Decision-Making Behaviors Affect Perceptions of Sensitive Information Exchange for Adolescent and Young Adult Patients. J Palliat Med. 2020 03; 23(3):310-311. View Abstract
  129. Communication Regarding Therapeutic Clinical Trial Enrollment Between Oncologists and Adolescents and Young Adults with Cancer. J Adolesc Young Adult Oncol. 2020 10; 9(5):608-612. View Abstract
  130. Teamwork in prognostic communication: Addressing bottlenecks and barriers. Pediatr Blood Cancer. 2020 05; 67(5):e28192. View Abstract
  131. Expanding construct validity of established and new PROMIS Pediatric measures for children and adolescents receiving cancer treatment. Pediatr Blood Cancer. 2020 04; 67(4):e28160. View Abstract
  132. On listening. Cancer. 2020 01 01; 126(9):1828-1831. View Abstract
  133. Peace of mind among adolescents and young adults with cancer. Psychooncology. 2020 03; 29(3):572-578. View Abstract
  134. Communication during childhood cancer: Systematic review of patient perspectives. Cancer. 2020 02 15; 126(4):701-716. View Abstract
  135. End-of-life care among adolescent and young adult patients with cancer living in poverty. Cancer. 2020 02 15; 126(4):886-893. View Abstract
  136. Emotional Communication in Advanced Pediatric Cancer Conversations. J Pain Symptom Manage. 2020 04; 59(4):808-817.e2. View Abstract
  137. Helping parents prepare for their child's end of life: A retrospective survey of cancer-bereaved parents. Pediatr Blood Cancer. 2020 02; 67(2):e27993. View Abstract
  138. Unrealistic parental expectations for cure in poor-prognosis childhood cancer. Cancer. 2020 01 15; 126(2):416-424. View Abstract
  139. Longitudinal prognostic communication needs of adolescents and young adults with cancer. Cancer. 2020 01 15; 126(2):400-407. View Abstract
  140. Mapping child and adolescent self-reported symptom data to clinician-reported adverse event grading to improve pediatric oncology care and research. Cancer. 2020 01 01; 126(1):140-147. View Abstract
  141. Communication interventions in adult and pediatric oncology: A scoping review and analysis of behavioral targets. PLoS One. 2019; 14(8):e0221536. View Abstract
  142. Racial and Ethnic Differences in Parental Decision-Making Roles in Pediatric Oncology. J Palliat Med. 2020 02; 23(2):192-197. View Abstract
  143. Knowing versus doing: The value of behavioral change models for emotional communication in oncology. Patient Educ Couns. 2019 12; 102(12):2344-2348. View Abstract
  144. Recovery of offline and online sentence processing in aphasia: Language and domain-general network neuroplasticity. Cortex. 2019 11; 120:394-418. View Abstract
  145. The evolution of regret: decision-making for parents of children with cancer. Support Care Cancer. 2020 Mar; 28(3):1215-1222. View Abstract
  146. Things that matter: Adolescent and young adult patients' priorities during cancer care. Pediatr Blood Cancer. 2019 09; 66(9):e27883. View Abstract
  147. Effective Communication for Newly Diagnosed Pediatric Patients With Cancer: Considerations for the Patients, Family Members, Providers, and Multidisciplinary Team. Am Soc Clin Oncol Educ Book. 2019 Jan; 39:573-581. View Abstract
  148. Adolescent and Young Adult Cancer Patients' Experiences With Treatment Decision-making. Pediatrics. 2019 05; 143(5). View Abstract
  149. How Do Blood Cancer Doctors Discuss Prognosis? Findings from a National Survey of Hematologic Oncologists. J Palliat Med. 2019 06; 22(6):677-684. View Abstract
  150. The genomic history of the Iberian Peninsula over the past 8000 years. Science. 2019 03 15; 363(6432):1230-1234. View Abstract
  151. Mucoepidermoid carcinoma of the head and neck in children. Int J Pediatr Otorhinolaryngol. 2019 May; 120:93-99. View Abstract
  152. Inclusion of children in the initial conversation about their cancer diagnosis: impact on parent experiences of the communication process. Support Care Cancer. 2019 Apr; 27(4):1319-1324. View Abstract
  153. Duality of purpose: Participant and parent understanding of the purpose of genomic tumor profiling research among children and young adults with solid tumors. JCO Precis Oncol. 2019; 3. View Abstract
  154. Persistently low peace of mind in parents of cancer patients: A five-year follow-up study. Pediatr Blood Cancer. 2019 05; 66(5):e27609. View Abstract
  155. Decisional burden among parents of children with cancer. Cancer. 2019 04 15; 125(8):1365-1372. View Abstract
  156. Squamous cell carcinoma of the head and neck in children. Int J Pediatr Otorhinolaryngol. 2019 Feb; 117:131-137. View Abstract
  157. Patient perceptions of curability and physician-reported disclosures of incurability in Japanese patients with unresectable/recurrent cancer: a cross-sectional survey. Jpn J Clin Oncol. 2018 Oct 01; 48(10):913-919. View Abstract
  158. Parental distress and desire for information regarding long-term implications of pediatric cancer treatment. Cancer. 2018 12 01; 124(23):4529-4537. View Abstract
  159. The PRISM intervention for adolescents and young adults with cancer: Paying attention to the patient as a whole person. Cancer. 2018 10 01; 124(19):3802-3805. View Abstract
  160. Pediatric vincristine-related vocal fold paralysis. Int J Pediatr Otorhinolaryngol. 2018 11; 114:166-169. View Abstract
  161. Closing the Gap on Pediatric Palliative Oncology Disparities. Semin Oncol Nurs. 2018 08; 34(3):294-302. View Abstract
  162. How Should We Enhance the Process and Purpose of Prognostic Communication in Oncology? AMA J Ethics. 2018 08 01; 20(8):E757-765. View Abstract
  163. Communication About Prognosis With Adolescent and Young Adult Patients With Cancer: Information Needs, Prognostic Awareness, and Outcomes of Disclosure. J Clin Oncol. 2018 06 20; 36(18):1861-1867. View Abstract
  164. Parent understanding of the risk of future limitations secondary to pediatric cancer treatment. Pediatr Blood Cancer. 2018 07; 65(7):e27020. View Abstract
  165. Reply to: Comment on: Adolescent patient involvement in discussions about relapsed or refractory cancer with oncology clinicians. Pediatr Blood Cancer. 2018 07; 65(7):e27049. View Abstract
  166. Reply to Cross-cultural communication in pediatric oncology: Catch them when they're young. Cancer. 2018 04 01; 124(7):1517. View Abstract
  167. Parent perspectives on information about late effects of childhood cancer treatment and their role in initial treatment decision making. Pediatr Blood Cancer. 2018 06; 65(6):e26978. View Abstract
  168. Sources of parental hope in pediatric oncology. Pediatr Blood Cancer. 2018 06; 65(6):e26981. View Abstract
  169. Intended and unintended consequences: Ethics, communication, and prognostic disclosure in pediatric oncology. Cancer. 2018 03 15; 124(6):1232-1241. View Abstract
  170. Adolescent patient involvement in discussions about relapsed or refractory cancer with oncology clinicians. Pediatr Blood Cancer. 2018 04; 65(4). View Abstract
  171. How Parents of Children With Cancer Learn About Their Children's Prognosis. Pediatrics. 2018 01; 141(1). View Abstract
  172. Child and adolescent self-report symptom measurement in pediatric oncology research: a systematic literature review. Qual Life Res. 2018 02; 27(2):291-319. View Abstract
  173. Disparities in prognosis communication among parents of children with cancer: The impact of race and ethnicity. Cancer. 2017 Oct 15; 123(20):3995-4003. View Abstract
  174. A Research Agenda for Communication Between Health Care Professionals and Patients Living With Serious Illness. JAMA Intern Med. 2017 09 01; 177(9):1361-1366. View Abstract
  175. Evaluation of Patient and Family Outpatient Complaints as a Strategy to Prioritize Efforts to Improve Cancer Care Delivery. Jt Comm J Qual Patient Saf. 2017 Oct; 43(10):498-507. View Abstract
  176. Pediatric Palliative Care-A Shared Priority. JAMA Oncol. 2017 09 01; 3(9):1220-1221. View Abstract
  177. Longitudinal parental preferences for late effects communication during cancer treatment. Pediatr Blood Cancer. 2018 Jan; 65(1). View Abstract
  178. Communication in pediatric oncology: State of the field and research agenda. Pediatr Blood Cancer. 2018 Jan; 65(1). View Abstract
  179. Fatalism and educational disparities in beliefs about the curability of advanced cancer. Patient Educ Couns. 2018 Jan; 101(1):113-118. View Abstract
  180. How a Child With Cancer Moved From Vulnerability to Resilience. J Clin Oncol. 2017 09 20; 35(27):3169-3171. View Abstract
  181. Holding hope. Pediatr Blood Cancer. 2017 09; 64(9). View Abstract
  182. Prognostic disclosures over time: Parental preferences and physician practices. Cancer. 2017 Oct 15; 123(20):4031-4038. View Abstract
  183. Cognitive Interview-Based Validation of the Patient-Reported Outcomes Version of the Common Terminology Criteria for Adverse Events in Adolescents with Cancer. J Pain Symptom Manage. 2017 04; 53(4):759-766. View Abstract
  184. Development of quality indicators for transition from pediatric to adult care in sickle cell disease: A modified Delphi survey of adult providers. Pediatr Blood Cancer. 2017 06; 64(6). View Abstract
  185. Communication preferences of pediatric cancer patients: talking about prognosis and their future life. Support Care Cancer. 2017 03; 25(3):769-774. View Abstract
  186. Difficult relationships between parents and physicians of children with cancer: A qualitative study of parent and physician perspectives. Cancer. 2017 02 15; 123(4):675-681. View Abstract
  187. Decisional Regret Among Parents of Children With Cancer. J Clin Oncol. 2016 11 20; 34(33):4023-4029. View Abstract
  188. Eliciting the child's voice in adverse event reporting in oncology trials: Cognitive interview findings from the Pediatric Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events initiative. Pediatr Blood Cancer. 2017 03; 64(3). View Abstract
  189. Prognostic Disclosures to Children: A Historical Perspective. Pediatrics. 2016 09; 138(3). View Abstract
  190. What Adult Cancer Care Can Learn From Pediatrics. J Oncol Pract. 2016 09; 12(9):765-7. View Abstract
  191. Care in the Final Month of Life among Adolescent and Young Adult Cancer Patients in Kaiser Permanente Southern California. J Palliat Med. 2016 11; 19(11):1136-1141. View Abstract
  192. Patient/parent perspectives on genomic tumor profiling of pediatric solid tumors: The Individualized Cancer Therapy (iCat) experience. Pediatr Blood Cancer. 2016 11; 63(11):1974-82. View Abstract
  193. Home care for children with multiple complex chronic conditions at the end of life: The choice of hospice versus home health. Home Health Care Serv Q. 2016 Jul-Dec; 35(3-4):101-111. View Abstract
  194. Lower Patient Ratings of Physician Communication Are Associated With Unmet Need for Symptom Management in Patients With Lung and Colorectal Cancer. J Oncol Pract. 2016 06; 12(6):e654-69. View Abstract
  195. Parental preparedness for late effects and long-term quality of life in survivors of childhood cancer. Cancer. 2016 08 15; 122(16):2587-94. View Abstract
  196. "Don't Try to Cover the Sky with Your Hands": Parents' Experiences with Prognosis Communication About Their Children with Advanced Cancer. J Palliat Med. 2016 06; 19(6):626-31. View Abstract
  197. Communication Skills Training in Pediatric Oncology: Moving Beyond Role Modeling. Pediatr Blood Cancer. 2016 Jun; 63(6):966-72. View Abstract
  198. Clusters of Multiple Complex Chronic Conditions: A Latent Class Analysis of Children at End of Life. J Pain Symptom Manage. 2016 05; 51(5):868-74. View Abstract
  199. Severe Tumor Lysis Syndrome and Acute Pulmonary Edema Requiring Extracorporeal Membrane Oxygenation Following Initiation of Chemotherapy for Metastatic Alveolar Rhabdomyosarcoma. Pediatr Blood Cancer. 2016 May; 63(5):928-30. View Abstract
  200. High Intensity of End-of-Life Care Among Adolescent and Young Adult Cancer Patients in the New York State Medicaid Program. Med Care. 2015 Dec; 53(12):1018-26. View Abstract
  201. Young Adult Perspectives on a Successful Transition from Pediatric to Adult Care in Sickle Cell Disease. J Hematol Res. 2015 Dec; 2(1):17-24. View Abstract
  202. Intensity of Medical Interventions between Diagnosis and Death in Patients with Advanced Lung and Colorectal Cancer: A CanCORS Analysis. J Palliat Med. 2016 Jan; 19(1):42-50. View Abstract
  203. Cancer treatment decision-making among young adults with lung and colorectal cancer: a comparison with adults in middle age. Psychooncology. 2016 09; 25(9):1085-91. View Abstract
  204. Deeper Conversations Need Not Wait Until the End. J Clin Oncol. 2015 Nov 20; 33(33):3974. View Abstract
  205. End-of-Life Care Intensity Among Adolescent and Young Adult Patients With Cancer in Kaiser Permanente Southern California. JAMA Oncol. 2015 Aug; 1(5):592-600. View Abstract
  206. Parental hope for children with advanced cancer. Pediatrics. 2015 May; 135(5):868-74. View Abstract
  207. Association of Actual and Preferred Decision Roles With Patient-Reported Quality of Care: Shared Decision Making in Cancer Care. JAMA Oncol. 2015 Apr; 1(1):50-8. View Abstract
  208. When to say when: How aggressively to care for children with multiply relapsed cancer? Pediatr Blood Cancer. 2015 Jul; 62(7):1119-20. View Abstract
  209. The role of families in decisions regarding cancer treatments. Cancer. 2015 Apr 01; 121(7):1079-87. View Abstract
  210. Patient beliefs that chemotherapy may be curative and care received at the end of life among patients with metastatic lung and colorectal cancer. Cancer. 2015 Jun 01; 121(11):1891-7. View Abstract
  211. Association of lower patient ratings of physician communication with need for symptom management in lung and colorectal cancer patients. J Clin Oncol. 2014 Nov; 32(31_suppl):153. View Abstract
  212. Pediatric hospice and palliative care: designing a mobile app for clinical practice. Comput Inform Nurs. 2014 Jul; 32(7):299-302. View Abstract
  213. Symptom prevalence in lung and colorectal cancer patients. J Pain Symptom Manage. 2015 Feb; 49(2):192-202. View Abstract
  214. Physicians' propensity to discuss prognosis is associated with patients' awareness of prognosis for metastatic cancers. J Palliat Med. 2014 Jun; 17(6):673-82. View Abstract
  215. Evaluating the quality of supportive oncology using patient-reported data. J Oncol Pract. 2014 Jul; 10(4):e223-30. View Abstract
  216. Communicating about prognosis: ethical responsibilities of pediatricians and parents. Pediatrics. 2014 Feb; 133 Suppl 1:S24-30. View Abstract
  217. Deliberation and the life cycle of informed consent. Hastings Cent Rep. 2014 Jan-Feb; 44(1):33-5. View Abstract
  218. Parent perceptions of the quality of information received about a child's cancer. Pediatr Blood Cancer. 2013 Nov; 60(11):1896-901. View Abstract
  219. Underuse of hospice care by Medicaid-insured patients with stage IV lung cancer in New York and California. J Clin Oncol. 2013 Jul 10; 31(20):2569-79. View Abstract
  220. The presentation and management of mandibular tumors in the pediatric population. Laryngoscope. 2013 Aug; 123(8):2035-42. View Abstract
  221. Talking with patients about dying. N Engl J Med. 2013 01 31; 368(5):480-1. View Abstract
  222. Evaluating the quality of supportive oncology using patient-reported survey data. J Clin Oncol. 2012 Dec; 30(34_suppl):42. View Abstract
  223. Associations between end-of-life discussion characteristics and care received near death: a prospective cohort study. J Clin Oncol. 2012 Dec 10; 30(35):4387-95. View Abstract
  224. Patients' expectations about effects of chemotherapy for advanced cancer. N Engl J Med. 2012 Oct 25; 367(17):1616-25. View Abstract
  225. Profit status and delivery of hospice care for infants: the mediating role of pediatric knowledge. J Palliat Med. 2012 Dec; 15(12):1369-73. View Abstract
  226. Selecting ambulatory emergency care (AEC) patients from the medical emergency in-take: the derivation and validation of the Amb score. Clin Med (Lond). 2012 Oct; 12(5):420-6. View Abstract
  227. Enough is indeed enough: ACGME required changes in pediatric training. Pediatr Blood Cancer. 2012 Dec 15; 59(7):1158-9. View Abstract
  228. Reasons why physicians do not have discussions about poor prognosis, why it matters, and what can be improved. J Clin Oncol. 2012 Aug 01; 30(22):2715-7. View Abstract
  229. Improving timeliness of antibiotic delivery for patients with fever and suspected neutropenia in a pediatric emergency department. Pediatrics. 2012 Jul; 130(1):e201-10. View Abstract
  230. Research participation experiences of parents of children with cancer who were asked about their child's prognosis. J Palliat Med. 2012 Mar; 15(3):269-73. View Abstract
  231. End-of-life care discussions among patients with advanced cancer: a cohort study. Ann Intern Med. 2012 Feb 07; 156(3):204-10. View Abstract
  232. Communication and decision support for children with advanced cancer and their families. Am Soc Clin Oncol Educ Book. 2012; 637-43. View Abstract
  233. Discussions about end-of-life care planning between physicians and patients with stage IV lung or colorectal cancer. J Clin Oncol. 2011 May 20; 29(15_suppl):6026. View Abstract
  234. 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. View Abstract
  235. Influence of patients' preferences and treatment site on cancer patients' end-of-life care. Cancer. 2010 Oct 01; 116(19):4656-63. View Abstract
  236. Training program in cancer and blood diseases: Pediatric Hematology/Oncology Fellowship Program, Children's Hospital Boston/Dana-Farber Cancer Institute. Am J Hematol. 2010 Oct; 85(10):793-4. View Abstract
  237. Racial disparities in the outcomes of communication on medical care received near death. Arch Intern Med. 2010 Sep 27; 170(17):1533-40. View Abstract
  238. Absorbing information about a child's incurable cancer. Oncology. 2010; 78(3-4):259-66. View Abstract
  239. End-of-life discussions, goal attainment, and distress at the end of life: predictors and outcomes of receipt of care consistent with preferences. J Clin Oncol. 2010 Mar 01; 28(7):1203-8. View Abstract
  240. Sinonasal and laryngeal carcinoma in children: correlation of imaging characteristics with clinicopathologic and cytogenetic features. AJNR Am J Neuroradiol. 2010 Feb; 31(2):257-61. View Abstract
  241. Measuring therapeutic alliance between oncologists and patients with advanced cancer: the Human Connection Scale. Cancer. 2009 Jul 15; 115(14):3302-11. View Abstract
  242. 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. View Abstract
  243. Personalized end-of-life care: Associations between patient preferences and treatment intensity near death. J Clin Oncol. 2009 May 20; 27(15_suppl):6516. View Abstract
  244. Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA. 2008 Oct 08; 300(14):1665-73. View Abstract
  245. Parents' views of cancer-directed therapy for children with no realistic chance for cure. J Clin Oncol. 2008 Oct 10; 26(29):4759-64. View Abstract
  246. A qualitative study of oncologists' approaches to end-of-life care. J Palliat Med. 2008 Jul; 11(6):893-906. View Abstract
  247. Peace, Equanimity, and Acceptance in the Cancer Experience (PEACE): validation of a scale to assess acceptance and struggle with terminal illness. Cancer. 2008 Jun; 112(11):2509-17. View Abstract
  248. Peace of mind and sense of purpose as core existential issues among parents of children with cancer. J Clin Oncol. 2008 May 20; 26(15_suppl):9518. View Abstract
  249. Hope and prognostic disclosure. J Clin Oncol. 2007 Dec 10; 25(35):5636-42. View Abstract
  250. Common gastrointestinal symptoms in pediatric palliative care: nausea, vomiting, constipation, anorexia, cachexia. Pediatr Clin North Am. 2007 Oct; 54(5):673-89, x. View Abstract
  251. Quality of health care for children: role of health and chronic illness in inpatient care experiences. Arch Pediatr Adolesc Med. 2007 Sep; 161(9):828-34. View Abstract
  252. 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. View Abstract
  253. 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. View Abstract
  254. Understanding of prognosis among parents of children with cancer: Parental optimism and the role of the parent-physician interaction. J Clin Oncol. 2006 Jun 20; 24(18_suppl):6033. View Abstract
  255. Mucoepidermoid carcinoma of the parotid gland in children: A 10-year experience. Arch Otolaryngol Head Neck Surg. 2006 Apr; 132(4):375-80. View Abstract
  256. Early integration of pediatric palliative care: for some children, palliative care starts at diagnosis. Curr Opin Pediatr. 2006 Feb; 18(1):10-4. View Abstract
  257. Can end of life care for the pediatric patient suffering with escalating and intractable symptoms be improved? J Pediatr Oncol Nurs. 2006 Jan-Feb; 23(1):45-51. View Abstract
  258. 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. View Abstract
  259. Factors associated with the quality of care at the end of life in children with cancer. J Clin Oncol. 2004 Jul 15; 22(14_suppl):8529. View Abstract
  260. The Day One Talk. J Clin Oncol. 2004 Feb 01; 22(3):563-6. View Abstract
  261. Iatrogenic pleuropulmonary charcoal instillation in a teenager. Pediatr Pulmonol. 2003 Jun; 35(6):490-3. View Abstract
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