Many patients being treated for cancer have significant distress and often do not receive the attention they require. The psychosocial concerns of these patients are now better recognized and treated through psycho-oncology, which has become a multidisciplinary subspecialty of oncology concerned with the emotional responses of patients at all stages of disease, their families, and staff. In her presentation at the NCCN 18th Annual Conference, Dr. Jimmie C. Holland briefly reviewed the early role played by the NCCN as well as other national and international organizations in improving the psychosocial care of patients with cancer.
Jimmie C. Holland and Barry D. Bultz
Elizabeth Harvey, Lauren Rogak, Ruth Ford and Jimmie Holland
The new quality standard for cancer care established in 2008 by the Institute of Medicine requires that the psychosocial domain be integrated into routine cancer care. The American College of Surgeons Commission on Cancer has incorporated this standard in its accreditation requirements for 1500 cancer centers in the country, to be fully implemented by 2015. Oncology offices and clinics are developing procedures for quickly identifying distressed patients and referring them to appropriate mental health professionals. The American Psychosocial Oncology Society (APOS), the Association of Oncology Social Work, and the Oncology Nursing Society are currently drafting recommendations to assist clinics in complying with accreditation requirements. A critical component of this new quality standard is assuring that those who need mental health services are referred to the appropriate resource. A large disconnect exists in most communities between oncology and mental health professionals because they treat very different patient populations. Therefore, oncology staff may have difficulty identifying mental health professionals for patients in need of psychological help. This step can be simplified by use of the APOS Helpline. This article discusses the unique role of the APOS Referral Helpline in the context of this new era of psychosocial care for patients with cancer.
Jimmie C. Holland, Brian J. Kelly and Mark I. Weinberger
Jimmie C. Holland, Mark Lazenby and Matthew J. Loscalzo
Daniel C. McFarland, Heather Polizzi, John Mascarenhas, Marina Kremyanskaya, Jimmie Holland and Ronald Hoffman
Background: BCR-ABL–negative myeloproliferative neoplasms (MPNs) represent a heterogeneous group of diseases, including essential thrombocythemia (ET), polycythemia vera (PV), and myelofibrosis (MF). Psychological manifestations among these diseases have not been adequately described. Methods: Cross-sectional surveys measuring distress, anxiety, and depression were collected from patients with BCR-ABL–negative MPNs from May 2015 to October 2015. Participants provided demographic information and completed the Distress Thermometer and Problem List (DT&PL) to assess distress and the Hospital Anxiety and Depression Scale (HADS) to assess distress, anxiety, and depression. They provided information on how their MPN affected their lives. Results: Of the 117 participants, 31.2% had PV, 28.4% had ET, 28.4% had MF, and 11.9% had another type of MPN. Time with MPN varied from less than 1 year (7.5%), 1 to 3 years (19.8%), 3 to 5 years (23.6%), 5 to 10 years (19.8%), and more than 10 years (29.2%). Distress averaged 3.14 (SD, 2.83; DT&PL), with 40.4% meeting NCCN criteria for distress, and averaged 8.97 (SD, 7.44; HADS), with 38.5% meeting HADS criteria for distress. Anxiety averaged 5.54 (SD, 4.37), with 31.3% meeting HADS criteria for anxiety. Depression averaged 3.4 (SD, 3.4), with 12.5% meeting HADS criteria for depression. Distress was higher for PV (3.86), MF (3.12), and “other” MPN (4.33) than it was for ET (1.81; P=.016). Distress was more common in non-white patients (P=.015) and those with either PV or MF but not ET (DT&PL ≥4; P=.038). Patients' comments described coping strategies or symptom burden. Conclusions: Distress and anxiety are highly prevalent with BCR-ABL–negative MPNs and may correspond to disease-related symptom burden. These findings deserve further study.
Daniel C. McFarland, Kelly M. Shaffer, Heather Polizzi, John Mascarenhas, Marina Kremyanskaya, Jimmie Holland and Ronald Hoffman
Background: Patients with myeloproliferative neoplasms (MPNs) can have a severe physical symptom burden over an extended disease trajectory that contributes to decreased quality of life. Few studies, however, have characterized which patients most frequently consider physical symptoms a problem. This study describes the physical symptoms of patients with MPNs and the relationship of these symptoms to patient characteristics. Methods: Patients with MPNs (N=117) completed questionnaires in a dedicated academic medical center MPN clinic. Patients reported demographics (age, race/ethnicity, sex, marital status, employment status), disease characteristics (MPN type, time with MPN), and whether they were bothered by any of 22 variables in the “Physical Problems” list in the Distress Thermometer and Problem List (DT&PL). Results: The median number of physical problems endorsed by patients was 2 (median, 2.26; SD, 3.18), with a range from 0 to 20. Two-fifths endorsed no physical problems, one-fifth endorsed 1 problem, and two-fifths endorsed ≥2 problems, with fatigue (35.5%), sleep (27.1%), pain (21.5%), dry skin/pruritus (18.7%), and memory/concentration (16.8%) being the most commonly reported. Non-Caucasian participants reported more problems with sleep (P=.050), pain (P=.016), and tingling (P=.026). Patients with polycythemia vera (PV) reported more issues with tingling (P=.046) and sexual problems (P=.032). Conclusions: Patients with MPNs are more likely to report physical symptom bother than to report no bother with multiple physical problems on the DT&PL. Patients of minority race/ethnicity and those with PV, however, showed heightened prevalence of physical problems—characteristics which may be used to triage patients for more intensive symptom management.
Jimmie C. Holland, Barbara Andersen, William S. Breitbart, Bruce Compas, Moreen M. Dudley, Stewart Fleishman, Caryl D. Fulcher, Donna B. Greenberg, Carl B. Greiner, George F. Handzo, Laura Hoofring, Paul B. Jacobsen, Sara J. Knight, Kate Learson, Michael H. Levy, Matthew J. Loscalzo, Sharon Manne, Randi McAllister-Black, Michelle B. Riba, Kristin Roper, Alan D. Valentine, Lynne I. Wagner and Michael A. Zevon
Arti Hurria, Ilene S. Browner, Harvey Jay Cohen, Crystal S. Denlinger, Mollie deShazo, Martine Extermann, Apar Kishor P. Ganti, Jimmie C. Holland, Holly M. Holmes, Mohana B. Karlekar, Nancy L. Keating, June McKoy, Bruno C. Medeiros, Ewa Mrozek, Tracey O’Connor, Stephen H. Petersdorf, Hope S. Rugo, Rebecca A. Silliman, William P. Tew, Louise C. Walter, Alva B. Weir III and Tanya Wildes
Jimmie C. Holland, Barbara Andersen, William S. Breitbart, Luke O. Buchmann, Bruce Compas, Teresa L. Deshields, Moreen M. Dudley, Stewart Fleishman, Caryl D. Fulcher, Donna B. Greenberg, Carl B. Greiner, George F. Handzo, Laura Hoofring, Charles Hoover, Paul B. Jacobsen, Elizabeth Kvale, Michael H. Levy, Matthew J. Loscalzo, Randi McAllister-Black, Karen Y. Mechanic, Oxana Palesh, Janice P. Pazar, Michelle B. Riba, Kristin Roper, Alan D. Valentine, Lynne I. Wagner, Michael A. Zevon, Nicole R. McMillian and Deborah A. Freedman-Cass
The integration of psychosocial care into the routine care of all patients with cancer is increasingly being recognized as the new standard of care. These NCCN Clinical Practice Guidelines in Oncology for Distress Management discuss the identification and treatment of psychosocial problems in patients with cancer. They are intended to assist oncology teams identify patients who require referral to psychosocial resources and to give oncology teams guidance on interventions for patients with mild distress to ensure that all patients with distress are recognized and treated.