Page 1641 - Hematology_ Basic Principles and Practice ( PDFDrive )

C H A P T E R 90

PSYCHOSOCIAL ASPECTS OF HEMATOLOGIC DISORDERS

Matthew J. Gonzales, Dawn M. Gross, and Elizabeth Cooke

Major changes in the understanding and treatment of cancer have view of medicine that is ongoing. 8–10 The emergence of palliative
led to increased survival for people diagnosed with hematologic medicine, a new specialty that overlaps symptom management and
cancers. Regardless of the advances and concomitant survival increase, end-of-life care with oncology specialists, has made an impact on
a diagnosis of a hematologic malignancy can have great impact on improving symptoms in oncology patients. 11,12 The Institute of
the psychosocial aspects of the lives of cancer survivors and their Medicine report Cancer Care for the Whole Patient: Meeting Psycho-
families. Diseases of the blood are perceived as serious and often fatal. social Health Needs lists 10 recommendations related to improving
Psychologic, existential, cognitive, social, and economic stressors are psychosocial health for patients and family members. 13
common experiences for cancer survivors. Despite the increasing
attention by providers, policy makers, and the general public on
long-term survivorship issues within the past 20 years, ongoing pro- CLINICAL COURSE OF HEMATOLOGIC MALIGNANCIES
gress must continue to be made in identifying and testing interven-
tions and services to meet the psychosocial aspects of quality cancer The incidence, course, treatment, and survival for various hemato-
1
care for patients and their families. Psychosocial interventions and logic malignancies vary widely, yet dramatic improvements in survival
services are those that enable patients, their families, and health care rates have been seen almost universally.
providers to optimize health care and health care outcomes by manag- In contrast to treatment of many solid cancers, treatment of
ing the psychologic, social, spiritual, and behavioral aspects of cancer hematologic malignancies often involves intense regimens, highly
and its consequences. technical therapies, lengthy hospitalizations, episodes of high infec-
These psychosocial aspects may be intensified in patients with tion risk, periods of unpredictability, and ongoing outpatient moni-
hematologic malignancies because of their association with an uncer- toring of the patient’s condition. A number of patients respond to
tain prognosis, a prolonged treatment course often involving numer- the curative attempts with long-term remission, remain well, and,
ous hospitalizations including periods of prolonged isolation, and the after a period, are considered cured. However, some patients have an
2
systemic nature of the diseases. Involvement with a complex and initial reduction in tumor burden in response to a curative attempt
fragmented health care system, the need for episodic and aggressive only to relapse at an unpredictable time later. Other patients begin
treatment, remissions and exacerbation of acute and distressing treatment with a hope for a cure but their cancer does not dissipate
symptoms, functional limitations, family separation, financial burden, often resulting in the individual’s progressive decline. In some
and role disruptions are a few of the issues that characterize the life patients, the cancer is so advanced at the time of diagnoses that they
of patients with hematologic malignancies, not to mention the threat experience a rapid progression of their disease. The remainder of this
to life imposed by these diagnoses. This chapter provides information chapter proceeds through the common trajectories associated with
on factors that affect psychosocial adjustment among patients with hematologic malignancies including diagnosis, treatment, relapse, the
hematologic malignancies, the wide range of psychologic responses end of life, and survivorship (Fig. 90.1).
that are possible throughout the illness trajectory, and the efficacy of
psychosocial interventions and services to minimize distress and
promote adaptation. Some practical guidelines regarding patient Time of Diagnosis
management and identification of patients who may require formal
psychiatric consultation are offered. Being diagnosed with a hematologic malignancy can be a devastating
time of crisis. The time of diagnosis has been described by a cancer
survivor as “a lightning bolt through a stop sign” or an existential
ACCOMPANYING TRENDS IN PSYCHOSOCIAL ISSUES plight. 14,15 It is a time of intense stress and likened to a personal
15
disaster in the patient’s and family’s life. Often these patients
Within the past several decades there have been significant advances describe vague symptoms such as fatigue for weeks, even months,
in oncology that have affected the psychosocial care of the cancer being treated in urgent care centers for presumed non–life-threatening
patient. The continued advances in quality-of-life research, survivor- illnesses, such as bronchitis or other uncomplicated infections. Fami-
ship, personalized medicine, patient-centered care, quality care initia- lies are often dismissed if they offer their concern, thus being
tives; interest in the reduction of health care disparities, evidence-based unprepared and blind-sided by the ultimate diagnosis of an unex-
medicine, and palliative medicine; and the increasing interest in pected, catastrophic illness. More recent literature has continued to
psychosocial health for patients and caregivers are a few of the changes confirm the distress at diagnosis and advance the understanding to
in cancer care. include potential psychiatric diagnosis such as depression and
Interest in health-related quality of life can be traced back to 1947 anxiety. 16
with the beginning of the first nonphysiologic outcome measure The period from time of diagnosis through initiation of treatment
for cancer: the Karnofsky performance scale. Exponential growth is characterized by sometimes fast-paced medical evaluation and
in disease- and individual-specific tools for measurement of health- treatment, the development of new relationships with unfamiliar
3,4
related quality of life continues to this day. Since the beginning of medical personnel, and the need to integrate a barrage of information
the survivorship movement, there has been increasing growth in leg- that is at best frightening and confusing. Often patients with hema-
islation, education, and advocacy for cancer survivors. The focus on tologic malignancies need immediate treatment intervention com-
personalized medicine coupled with an interest in decreasing health pared with those patients with solid tumors. But even with the
care disparities has incorporated the idea of tailoring interventions to advanced speed of information in this technologic age, patients have
5–7
the needs of individual patients. The Institute of Medicine report difficulty with information integration in a short period of time.
the “Quality Chasm” has begun a dialogue of the patient-centered Within the context of this anxiety-provoking situation, timely deci-

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