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Psychosocial Considerations and Assessment of Patients with Hematological Malignancies and Serious Blood Disorders

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Palliative Care in Hematologic Malignancies and Serious Blood Disorders

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Abstract

Diagnosis, prognosis, and the realities of disease-directed treatment affect everything from a person’s sense of safety to their sense of identity. A well-rounded treatment plan aimed at the healing of the person as a whole must take this impact into account. A comprehensive psychosocial assessment is a key tool to assessing and understanding a patient’s strengths, needs, and circumstances. This chapter provides an overview of the assessment goals and practicalities, including timing and whom should be present, vital areas for assessment, empirical tools that can be utilized throughout the assessment process, and how psychosocial assessment informs specific interventions or therapies to improve patient and family function. Appreciating and understanding the psychosocial needs of individuals with hematological malignancies or serious blood disorders will enable all clinicians to provide optimal care support throughout the continuum of care.

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References

  1. Bronfenbrenner U. The ecology of human development. Cambridge, MA: Harvard University Press; 1979.

    Google Scholar 

  2. Maslow AH. Religions, values, and peak experiences. New York: Penguin; 1970. (Original work published 1966)

    Google Scholar 

  3. Saleebey D. The strengths perspective in social work practice: extensions and cautions. Soc Work. 1996;41(3):296–305.

    CAS  PubMed  Google Scholar 

  4. Nicholas DR, Veach TA. The psychosocial assessment of the adult cancer patient. Prof Psychol Res Pract. 2000;31(2):206–15.

    Article  Google Scholar 

  5. Kazak AE, Brier M, Alderfer MA, Reilly A, Parker SF, Rogerwick S, Ditaranto S, Barakat LP. Screening for psychosocial risk in pediatric cancer. Pediatr Blood Cancer. 2012;59(5):822–7. https://doi.org/10.1002/pbc.24166.

    Article  PubMed  PubMed Central  Google Scholar 

  6. Fiala MA, Finney JD, Liu J, Stockerl-Goldstein KE, Tomasson MH, Vij R, Wildes TM. Socioeconomic status is independently associated with overall survival in patients with multiple myeloma. Leuk Lymphoma. 2015;56(9):2643–9.

    Article  PubMed  PubMed Central  Google Scholar 

  7. Liou SY, Stephens JM, Carpiuc KT, Feng W, Botteman MF, Hay JW. Economic burden of haematological adverse effects in cancer patients: a systematic review. Clin Drug Investig. 2007;27:381–96.

    Article  CAS  PubMed  Google Scholar 

  8. Stump TK, Eghan N, Egleston BL, Hamilton O, Pirollo M, Sanford Schwartz J. Cost concerns of patients with cancer. J Oncol Pract. 2013;9:251–7.

    Article  PubMed  PubMed Central  Google Scholar 

  9. Kadan-Lottick NS, Vanderwerker LC, Block SD, Zhang B, Prigerson HG. Psychiatric disorders and mental health service use in patients with advanced cancer: a report from the coping with cancer study. Cancer. 2005;104(12):2872–81.

    Article  PubMed  Google Scholar 

  10. Prieto JM, Blanch J, Atala J, Carreras E, Rovira M, Cirera E, Gasto C. Psychiatric morbidity and impact on hospital length of stay among hematologic cancer patients receiving stem-cell transplantation. J Clin Oncol. 2002;20(7):1907–17.

    Article  PubMed  Google Scholar 

  11. Kazak AE, Alderfer MA, Streisand R, Simms S, Rourke MT, Barakat LP, Gallagher P, Cnaan A. Treatment of posttraumatic stress symptoms in adolescent survivors of childhood cancer and their families: a randomized clinical trial. J Fam Psychol. 2004;18(3):493–504.

    Article  PubMed  Google Scholar 

  12. Stuber ML, Shemesh E. Post-traumatic stress response to life-threatening illnesses in children and their parents. Child Adolesc Psychiatr Clin N Am. 2006;15:597–609.

    Article  PubMed  Google Scholar 

  13. Applebaum A, Bevans M, Son T, Evans K, Hernandez M, Giralt S, DuHamel K. A scoping review of caregiver burden during allogeneic HSCT: lessons learned and future directions. Bone Marrow Transplant. 2016;51:1416–22.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  14. Wadhwa D, Burman D, Swami N, Rodin G, Lo C, Zimmermann C. Quality of life and mental health in caregivers of outpatients with advanced cancer. Psycho-Oncology. 2013;22(2):403–10.

    Article  PubMed  Google Scholar 

  15. Edmond SN, Graves PE, Whiting SE, Karlson CW. Emotional distress and burden among caregivers of children with oncological/hematological disorders. Fam Syst Health. 2016;34(2):166–171.s.

    Article  PubMed  Google Scholar 

  16. MacLeod KD, Whitsett SF, Mash EJ, Pelletier W. Pediatric sibling donors of successful and unsuccessful hematopoietic stem cell transplants (HSCT): a qualitative study of their psychosocial experience. J Pediatr Psychol. 2003;28(4):223–30. https://doi.org/10.1093/jpepsy/jsg010.

    Article  PubMed  Google Scholar 

  17. Wanner M, Bochert S, Schreyer IM, et al. Losing the genetic twin: donor grief after unsuccessful unrelated stem cell transplantation. BMC Health Serv Res. 2009;9:2. https://doi.org/10.1186/1472-6963-9-2.

    Article  PubMed  PubMed Central  Google Scholar 

  18. Kahn JM, Keegan TH, Tao L, Abrahão R, Bleyer A, Viny AD. Racial disparities in the survival of American children, adolescents, and young adults with acute lymphoblastic leukemia, acute myelogenous leukemia, and Hodgkin lymphoma. Cancer. 2016;122(17):2723–30.

    Article  PubMed  Google Scholar 

  19. Ward E, Jemal A, Cokkinides V, Singh GK, Cardinez C, Ghafoor A, Thun M. Cancer disparities by race/ethnicity and socioeconomic status. CA Cancer J Clin. 2004;54(2):78–93.

    Article  PubMed  Google Scholar 

  20. Kirtane K, Lee SJ. Racial and ethnic disparities in hematologic malignancies. Blood. 2017;130(15):1699–705.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  21. Adelstein KE, Anderson JG, Taylor AG. Importance of meaning-making for patients undergoing hematopoietic stem cell transplantation. Oncol Nurs Forum. 2014;41(2):E172–84.

    Article  PubMed  Google Scholar 

  22. Bluebond-Langner M. The private worlds of dying children. Princeton, NJ: Princeton University Press; 1978.

    Book  Google Scholar 

  23. Heilferty C. Spiritual development and the dying child: the pediatric nurse practitioner’s role. J Pediatr Health Care. 2004;18(6):271–5.

    Article  PubMed  Google Scholar 

  24. Worden JW. Grief counseling and grief therapy: a handbook for the mental health practitioner. 4th ed. New York: Springer Publishing Company; 2008.

    Book  Google Scholar 

  25. Kazak AE. Pediatric psychosocial preventative health model (PPPHM): research, practice, and collaboration in pediatric family systems medicine. Fam Syst Health. 2006;24(4):381–95.

    Article  Google Scholar 

  26. Kazak AE, Didonato S, Schneider SJ, Pai ALH. Assessing family psychosocial risks in pediatric cancer. In: Abrams AN, Muriel AC, Wiener L, editors. Pediatric psychosocial oncology: textbook for multidisciplinary care. Cham: Springer; 2016. p. 51–65.

    Chapter  Google Scholar 

  27. Burgers DE, Tarquini SJ, Kazak AE, Muriel AC. Screening and assessment in pediatric psycho-oncology. In: Breitbart MD, Butow PN, Jacobsen PB, Lam W, Lazenby M, Loscalzo MJ, editors. Psycho-oncology. 4th ed. Oxford; forthcoming.

    Google Scholar 

  28. Kazak AE, Hwang WT, Chen FF, et al. Screening for family psychosocial risk in pediatric cancer: validation of the psychosocial assessment tool (PAT) version 3. J Pediatr Psychol. 2018;43(7):737–48. https://doi.org/10.1093/jpepsy/jsy012.

    Article  PubMed  Google Scholar 

  29. Hinds P, et al. PROMIS pediatric measures in pediatric oncology: valid and clinically feasible indicators of patient-reported outcomes. Pediatr Blood Cancer. 2013;60(3):402–8. https://doi.org/10.1002/pbc.24233.

    Article  PubMed  Google Scholar 

  30. Patel SK, Mullins W, Turk A, Dekel N, Kinjo C, Sato JK. Distress screening, rater agreement, and services in pediatric oncology. Psycho-Oncology. 2011;20(12):1324–33.

    Article  PubMed  Google Scholar 

  31. Wiener L, Battles H, Zadeh S, Widemann BC, Pao M. Validity, specificity, feasibility and acceptability of a brief pediatric distress thermometer in outpatient clinics. Psycho-Oncology. 2017;26(4):461–8.

    Article  PubMed  Google Scholar 

  32. Watson M, Dunn J, Holland JC. Review of the history and development in the field of psychosocial oncology. Int Rev Psychiatry. 2014;26(1):128–35.

    Article  PubMed  Google Scholar 

  33. NICE. Guidance on cancer services improving supportive and palliative care for adults with cancer. London: National Institute of Health and Clinical Excellence; 2004.

    Google Scholar 

  34. Hutchison SD, Steginga SK, Dunn J. The tiered model of psychosocial intervention in cancer: a community-based approach. Psychooncology. 2005;15:541–6.

    Article  Google Scholar 

  35. National Comprehensive Cancer Center. (2020). Distress during cancer care [brochure]. https://www.nccn.org/patients/guidelines/content/PDF/distress-patient.pdf.

  36. Krause N, Borawski-Clark E. Social class differences in social support among older adults. The Gerontologist. 1995;35:498–508.

    Article  CAS  PubMed  Google Scholar 

  37. Dilworth-Anderson P, Brummett BH, Goodwin P, Williams SW, Williams RB, Siegler IC. Effect of race on cultural justifications for caregiving. J Geronol Series B. 2005;60(5):257–62.

    Article  Google Scholar 

  38. Beckham JC, Burker EJ, Feldman ME, Costakis MJ. Self-efficacy and adjustment in cancer patients: a preliminary report. Behav Med. 1997;23(3):138–42.

    Article  CAS  PubMed  Google Scholar 

  39. Hunt SM, McEwen J, McKenna SP. J R Coll Gen Pract. 1985;35(273):185–8.

    CAS  PubMed  PubMed Central  Google Scholar 

  40. Vrettos I, Konstantinos K, Kontodimopoulos N, Pappa E, Georgiadou E, Haritos D, Papadopoulos A, Niakas D. Comparing health-related quality of life of cancer patients under chemotherapy and of their caregivers. Sci World J. 2012;2012:135283. https://doi.org/10.1100/2012/135283.

    Article  Google Scholar 

  41. Aaronson NK, Ahmedzai S, Bergman B, Bullinger M, Cull A, Duez NJ, Filiberti A, Flechtner H, Fleishman SB, de Haes JCJM, Kaasa S, Klee M, Osoba D, Razavi D, Rofe PB, Schraub S, Sneeuw K, Sullivan M, Takeda E. The European Organization for Research and Treatment of cancer QLQ-C30: a quality-of-life instrument for use in international clinical trials in oncology. J Natl Cancer Inst. 1993;85(5):365–76.

    Article  CAS  PubMed  Google Scholar 

  42. Carroll BT, Kathol RG, Noyes R, Wald TG, Clamon GH. Screening for depression and anxiety in cancer patients using the hospital anxiety and depression scale. Gen Hosp Psychiatry. 1993;15(2):69–74.

    Article  CAS  PubMed  Google Scholar 

  43. Watson M, Greer S, Young J, Inayat Q, Burgess C, Robertson B. Development of a questionnaire measure of adjustment to cancer: the MAC scale. Psychol Med. 1988;18:203–9.

    Article  CAS  PubMed  Google Scholar 

  44. Lo C, Walsh A, Mikulincer M, Gagliese L, Zimmermann C, Rodin G. Measuring attachment security in patients with advanced cancer: psychometric properties of a modified and brief experiences in close relationships scale. Psycho-Oncology. 2008;18:490–9.

    Article  Google Scholar 

  45. Puchalski C, Romer AL. Taking a spiritual history allows clinicians to understand patients more fully. J Palliat Med. 2000;3(1):129–37.

    Article  CAS  PubMed  Google Scholar 

  46. Pearlin LI, Mullan JT, Semple SJ, Skaff MM. Caregiving and the stress process: an overview of concepts and their measures. The Gerontologist. 1990;30:583–94.

    Article  CAS  PubMed  Google Scholar 

  47. Picot SJF, Youngblut J, Zeller R. Development and testing of a measure of perceived caregiver rewards in adults. J Nurs Meas. 1997;5(1):33–52.

    Article  CAS  PubMed  Google Scholar 

  48. Abidin RR. Parenting stress index. 4th ed. Lutz, FL: PAR; 2012.

    Google Scholar 

  49. Stein REK, Riessman CK. The development of the impact on family scale: preliminary findings. Med Care. 1980;18:465–72.

    Article  CAS  PubMed  Google Scholar 

  50. Meltzer LJ, Mindell JA. Systematic review and meta-analysis of behavioral interventions for pediatric insomnia. J Pediatr Psychol. 2014;39(8):932–48.

    Article  PubMed  Google Scholar 

  51. Uman LS, Chambers CT, McGrath PJ, Kisely S. A systematic review of randomized controlled trials examining psychological interventions for needle-related procedural pain and distress in children and adolescents: an abbreviated Cochrane review. J Pediatr Psychol. 2008;33(8):842–54.

    Article  PubMed  PubMed Central  Google Scholar 

  52. Dean AJ, Walters J, Hall A. A systematic review of interventions to enhance medication adherence in children and adolescents with chronic illness. Arch Dis Child. 2010;95(9):717–23.

    Article  PubMed  Google Scholar 

  53. Bennett S, Shafran R, Coughtrey A, Walker S, Heyman I. Psychological interventions for mental health disorders in children with chronic physical illness: a systematic review. Arch Dis Child. 2015;100(4):308–16.

    Article  PubMed  Google Scholar 

  54. Ahola Kohut S, Stinson J, Davies-Chalmers C, Ruskin D, van Wyk M. Mindfulness-based interventions in clinical samples of adolescents with chronic illness: a systematic review. J Altern Complement Med. 2017;23(8):581–9.

    Article  PubMed  Google Scholar 

  55. Zhou ES, Suh S, Youn S, Chung S. Adapting cognitive-behavior therapy for insomnia in cancer patients. Sleep Med Res. 2017;8(2):51–61.

    Article  Google Scholar 

  56. Richardson J, Smith JE, McCall G, Richardson A, Pilkington K, Kirsch I. Hypnosis for nausea and vomiting in cancer chemotherapy: a systematic review of the research evidence. Eur J Cancer Care. 2006;16:402–12.

    Article  Google Scholar 

  57. Spencer JC, Wheeler SB. A systematic review of motivational interviewing interventions in cancer patients and survivors. Patient Educ Couns. 2016;99(7):1099–105.

    Article  PubMed  Google Scholar 

  58. Carlson L, Speca M, Segal Z. Mindfulness-based cancer recovery: a step-by-step MBSR approach to help you cope with treatment and reclaim your life. Oakland, CA: New Harbinger Publications; 2011.

    Google Scholar 

  59. Law E, Fisher E, Eccleston C, Palermo TM. Psychological interventions for parents of children and adolescents with chronic illness. Cochrane Database Syst Rev. 2019;3:1–171.

    Google Scholar 

  60. Toledo T, Akinyemi E. Caregiver burnout: application of dialectical behavior therapy. Am J Geriatr Psychiatry. 2017;25(3):88–9.

    Article  Google Scholar 

  61. Secinti E, Tometich DB, Johns SA, Mosher CE. The relationship between acceptance of cancer and distress: a meta-analytic review. Clin Psychol Rev. 2019;71:27–38.

    Article  PubMed  PubMed Central  Google Scholar 

  62. Meyer EC, Sellers DE, Browning DM, McGuffie K, Solomon MZ, Truog RD. Difficult conversations: improving communication skills and relational abilities in health care. Pediatr Crit Care Med. 2009;10(3):352–9.

    Article  PubMed  Google Scholar 

  63. Spinetta JJ, Masera G, Eden T, Oppenheim D, Martins AG, van Dongen-Melman J, Weyl M. Refusal, non-compliance, and abandonment of treatment in children and adolescents with cancer. A report of the SIOP working committee on psychosocial issues in pediatric oncology. Med Pediatr Oncol. 2002;38(2):114–7.

    Article  PubMed  Google Scholar 

  64. Baile WF, Buckman R, Lenzi R, Glober G, Beale EA, Kudelka AP. SPIKES-A six-step protocol for delivering bad news: application to the patient with cancer. Oncologist. 2000;5(4):302–11.

    Article  CAS  PubMed  Google Scholar 

  65. Kim Y, Carver CS, Spiegel D, Mitchell HR, Cannady RS. Role of family caregivers' self-perceived preparedness for the death of the cancer patient in long-term adjustment to bereavement. Psycho-Oncology. 2017;26(4):484–92.

    Article  PubMed  Google Scholar 

  66. McCarthy MC, Clarke NE, Ting CL, Conroy R, Anderson VA, Heath JA. Prevalence and predictors of parental grief and depression after the death of a child from cancer. J Palliat Med. 2010;13(11):1321–6.

    Article  PubMed  Google Scholar 

  67. Lichtenthal WG, Sweeney CR, Roberts KE, Corner GW, Donovan LA, Prigerson HG, Wiener L. Bereavement follow-up after the death of a child as a standard of care in pediatric oncology. Pediatr Blood Cancer. 2015;62(S5):S834–69.

    Article  PubMed  PubMed Central  Google Scholar 

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Authors and Affiliations

  1. Grief and Trauma Psychotherapist, The Wendt Center for Loss and Healing, Washington, DC, USA

    Kristin Drouin

  2. Department of Psychosocial Oncology and Palliative Care, Boston Children’s Hospital and Dana-Farber Cancer Institute, Boston, MA, USA

    Nicholas Purol

  3. Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, MA, USA

    Sarah J. Tarquini & Kristen Uhl

  4. Division of Pediatric Psychosocial Oncology, Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, MA, USA

    Darcy E. Burgers

Authors
  1. Kristin Drouin
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  2. Nicholas Purol
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  3. Sarah J. Tarquini
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  4. Darcy E. Burgers
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  5. Kristen Uhl
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Corresponding author

Correspondence to Kristin Drouin .

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Editors and Affiliations

  1. Harvard Medical School, Boston, MA, USA

    Christina K. Ullrich

  2. Oregon Health and Science University, Portland, OR, USA

    Eric J. Roeland

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Drouin, K., Purol, N., Tarquini, S.J., Burgers, D.E., Uhl, K. (2023). Psychosocial Considerations and Assessment of Patients with Hematological Malignancies and Serious Blood Disorders. In: Ullrich, C.K., Roeland, E.J. (eds) Palliative Care in Hematologic Malignancies and Serious Blood Disorders. Springer, Cham. https://doi.org/10.1007/978-3-031-38058-7_16

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  • DOI: https://doi.org/10.1007/978-3-031-38058-7_16

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