Page 1644 - Hematology_ Basic Principles and Practice ( PDFDrive )

Chapter 90 Psychosocial Aspects of Hematologic Disorders 1465

Long-term effects may include persistent viral, bacterial, and fungal to the cancer experience, fear of recurrence, support of the family,
susceptibility, GVHD, dental caries, muscle atrophy, pneumonitis, demographic factors, and financial stressors. This transition time is
gonadal dysfunction, sexual dysfunction, endocrine abnormalities, pivotal for patients’ long-term quality of life. Surveillance with specific
cataracts, ocular sicca syndrome, reduced bone mass, secondary questions to access the need for referrals can have lasting outcomes.
41
malignancies, and cognitive dysfunction. In addition to monitoring
physical complications, the American Society for Blood and Marrow
Transplantation (ASBMT) consensus statement recommends annual Time of Relapse
evaluation of patients’ psychologic status. Health care providers must
have a high level of vigilance to assess depression in both the patient The time of recurrence of cancer has been reported to be more dis-
and family caregiver years after transplant, with clinical assessments tressing for patients and family members than the initial diagnosis.
recommended annually after transplant. Studies of transplant survi- The recurrence of the disease can plunge the patient and family into
vors beyond 10 years indicate possible issues with returning to work, despair and crisis as they realize that death may occur despite the
physical fitness, impairment in social functioning and family life, ongoing fight to live. The psychosocial issues experienced by the
insurance denial, and continued symptoms such as pain, depres- person with cancer depend in part on the clinical course of the disease
sion, muscle stiffness/cramps, memory/attention problems, sleep process. As the disease progresses, the person often reports an upset-
disorders, sexual issues, and incontinence. 42,43 In spite of the range ting scenario that includes uncertainty, frequent pain, diminished
of problems, only 9.8% of patients reported accessing psychologic functional ability, increased dependence, and disability. 47
support. 42 The development of a relapse after a disease-free interval can be
The concept of posttraumatic growth (PTG) after transplantation especially devastating for patients and those close to them. The
has been evolving. By definition, the potential for PTG requires that medical workup often is difficult and anxiety provoking, and psycho-
patients experience a stressful event and then subsequently experience social problems experienced at the time of diagnosis frequently
47
positive psychologic outcomes or benefits. As early as 1996, Fromm resurface, often with greater intensity. Shock and depression can
identified that positive sequelae are possible after transplantation, accompany relapse and require patients and family members to
including the development of a new philosophy of life, greater reevaluate the future. In spite of the overwhelming nature of the
appreciation of life, making changes in personal characteristics, and psychosocial responses, however, most patients cope effectively with
44
improving relationships with family and friends. Potential predic- progressive disease. It is essential to recognize that intense emotions
tors of PTG among posttransplant patients include good social do not necessarily equate with maladaptive coping. Investigators
support, little avoidance coping, younger age, less education, greater studying quality of life in patients with cancer have demonstrated a
use of positive reinterpretation, problem solving, seeking alternative clear relationship between a person’s perception of their quality of life
rewards, more stressful appraisal of the experience, and more nega- and the presence of discomfort. 48,49 As uncomfortable symptoms
tively biased recall of pretransplant levels of psychologic distress. 22,45 increase, perceived quality of life diminishes. An important goal in
Discussing the PTG potential with patients and making referrals for the psychosocial treatment of patients with advanced cancer is
counseling to experienced clinicians who are aware of the potential optimal symptom management.
for PTG are essential. An issue that repeatedly surfaces among patients, family members,
Although patients report long-term psychosocial effects after and professional care providers is the use of aggressive treatment
transplantation, they may be reluctant to accept help and fail to access protocols in the presence of relapse and progressive disease. Currently
42
psychologic resources and social support. These patients must be there are newer agents that can induce remission even in the face of
encouraged to use resources and seek psychologic support, because relapse. In addition, patients and families often request participation
this experience may impair the patients’ and families’ ability to cope in experimental protocols, even when there is little likelihood of
with life after transplant. In an article about HSCT patients’ experi- extending survival. Controversy continues about the efficacy of such
ences with a support group, Sherman et al identified the themes of therapies and the role health care providers can play in facilitating
meaning and changing of perspectives as patients expressed their patients’ choices about participating. Clear communication about
struggles with redefining themselves, their priorities, and their treatment goals and expectations will assist in patient and family
26
values. Some patients wanted to change their former values and preparation.
behaviors. The support group experience may be therapeutic for Certain patients respond to investigational treatment with
patients who often do not have physical signs of transplant to the increased hope. It is vital to clarify the values, thoughts, and psycho-
untrained eye but continue to experience increasing or unresolved logic reactions of care providers, patients, and families to the delicate
psychologic and physical issues. 21,25 Sharing a common experience issues that evolve if individualized care with attention to the patient’s
may encourage patients to believe that their symptoms and feelings psychosocial needs is to be provided.
are not unique and may decrease their feelings of isolation.
Survivorship
Immediate Period Following Diagnosis and Treatment
The definition of a long-term survivor has evolved over time. Initially,
As the treatment and acute side effects improve and subside, patients individuals who had survived cancer-free for longer than 5 years were
often feel that the whirlwind has passed, only to be confronted with considered “survivors and cured.” More recently the term survivor
uneasy silence. Weeks and months of clinic and physician appoint- has been used to define individuals who have completed the acute
ments, infusions, and admissions stop or trickle to a small stream of phase of illness. Others use the term for all patients initially diagnosed
appointments. Families who have been functioning on a grinding with cancer. Some people would prefer changing the term to “thriv-
schedule of crisis mode find the change almost paralyzing. Adding to ers,” champions, or fighters. 50
this halt of activity, health care providers have a tendency to limit Successful treatment of hematologic malignancies has resulted in
their contacts when the patients’ physical status has stabilized. This cure for many patients and progressively longer lives for others.
is a critical time when psychosocial interventions and supportive However, longer survival is not without significant psychologic
services from other members of the health care team must be insti- sequelae. 51–56 New treatments may result in unintended physical side
tuted for patients and family members to deal with the uncertainty effects such as infertility, treatment-related toxicity, persistent side
and anxiety of waiting. Fears and anxieties change from fighting the effects, and organ system failure that can magnify and exacerbate the
46
disease to returning to life. Because of less contact with the primary psychologic issues initially associated with diagnosis and treat-
treatment hematologists, patients and families may perceive a with- ment. 48,49,57 The overwhelming evidence from the literature involving
drawal of support from the medical team. Long-term psychosocial survivors with hematologic malignancies is that, on average, most do
health of the patient and family is affected by the meaning ascribed very well after the initial adjustment in the first 1 to 3 years after