Page 1643 - Hematology_ Basic Principles and Practice ( PDFDrive )

1464 Part VIII Comprehensive Care of Patients with Hematologic Malignancies

potentially expected side effects. When this happens patients may period between admission to consult, more delirium, and more
become skeptical about the completeness or accuracy of any future socioeconomic and health-related distress.
information given by the person. This threat to undermine a trusting Patients are often not prepared for the long, gradual recovery.
relationship has important implications for decision making, patient Patients are more familiar with recovery after surgery that takes days
choice of care setting in the future, and recommendations made by to weeks, and they are unprepared for and overwhelmed with the
patients to others who are seeking a source of cancer care. long recovery that can take weeks to months or even months to years.
Often during the treatment phase increasing burdens are placed Typically patients perceived their quality of life to be worse the first
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on the immediate caregiver and family to support the patient’s year after transplant than before transplant. Patients continue to feel
schedule for treatment, multiple admissions, and increasing depen- functional limitations, and both recipients of autologous and/or
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dency. The patient may be unable to work, and financial stressors allogeneic transplants report common somatic symptoms, with
accumulate. Sensitivity and awareness by providers to social, eco- fatigue being the most common distressing symptom. 33–35 Patients
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nomic, and relationship stresses are needed to assist with referral for who experience depression the first year have a higher mortality rate.
social services and other psychologic assistance. Support groups with Periods when patients may be more psychologically vulnerable may
other patients, families and caregivers, can be helpful during this occur at transition periods such as admission workup, directly before
time. Evidence clearly indicates that sharing a common experience in transplant, discharge from the inpatient setting, between 3 and 5
a support group can have psychologic benefit. 26 months, and between 6 and 9 months posttransplant.
The financial burden for patients who undergo HSCT can be
DECISION FOR HEMATOPOIETIC STEM overwhelming, including medical expenses for the patient and
marrow donor in the case of an allogeneic HSCT, potential travel
CELL TRANSPLANTATION expenses, and loss of income for other caregiving family members.
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Patients and their immediate families often are geographically far
Hematopoietic stem cell transplantation (HSCT) is increasingly from their usual support systems because of the distance to the HSCT
becoming a standard treatment for many high-risk hematologic center. In some cases, family members who have not been close in
malignancies and nonmalignant diseases either as part of overall the past may be forced to interact with each other, leading to addi-
treatment or after relapse. The procedure for transplantation is tional stress.
complex and can cause intense psychologic distress and extreme social Although the literature is clear that most patients return to a
strain on the patient’s caregiver, friends, and family members. Often productive life with high quality of life, during the first few years after
the psychologic and social issues can be more challenging for the transplantation, patients and family members may continue to
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health care team than the medical issues. Because HSCT is an intense experience physical and psychologic sequelae. One study reported
and distinctive experience for patients and families and has the that 43% of long-term HSCT survivors with an average of 3.4 years
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potential to cause prolonged psychologic distress unlike other experi- after transplant had clinically significant global psychologic distress.
ences with oncology patients, the issues unique to this population Despite this distress, only 50% of the patients received mental health
warrant a separate discussion. services. 39
HSCT patients may face unique physical and psychologic stresses Researchers have described the following factors as predictors of
consisting of recurrent infections, repeated hospitalizations, and poorer quality of life in patients 1 to 5 years after transplant: diagnoses
social isolation for weeks to months during their initial recovery. of anxiety and/or depression, younger age, long-term sequelae,
Consequently a thorough pretransplant psychosocial evaluation is chronic GVHD, unemployment, lower income, poor functional
recommended to identify those patients at risk for development of status, family/caregiver distress, and short follow-up by the treatment
psychosocial morbidity and to initiate timely interventions to opti- center. 32,33,39
mize adaptation. Identified risk factors for psychosocial morbidity Patient and families are ready to put the experience behind them,
during and following transplant include previous psychiatric morbid- only to discover that the experience of transplant has forever changed
ity, pretransplant compliance issues, pretransplant physical and the patient’s outlook, priorities, and family network. Fear of recur-
mental health problems, younger age, female sex, avoidant coping rence and feelings of uncertainty related to future relationships, work,
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style, recent smoking cessation, lower functioning status on admis- and financial strain continue. There is discordance between the
sion, problems with quality and presence of social support before patients’ pre-HSCT expectations and the everyday symptoms that
transplant, perception of limited social support, and the presence of limit their physical abilities. Besides fatigue, which continues to be
difficult relationships. 21,27 the dominant symptom, another distressing issue is cognitive dys-
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The time of transplantation when the infusion of cells occurs can function as patients return to the workplace or reenter school.
be a special moment for patients, with patients often referring to the Educating patients about some expected common short-term side
date of transplant as a “birthday” or special anniversary date. Often effects can reduce anxiety. Neurocognitive side effects of treatment
family members are gathered at the bedside to celebrate the long- can be long term in high-risk patients but are mostly temporary,
awaited event of the transplant. However, the weeks following including diminished concentration, short-term memory loss,
transplant can be difficult psychologically. Factors that can affect decreased speed of information processing, and loss of effective
psychologic distress and subsequent coping include persistent symp- problem-solving abilities. Sexuality issues are another area of great
toms following transplant, increased regimen-related toxicity, slower concern for patients in the posttransplant period. Barriers for discus-
physical recovery, low performance status, longer length of stay, graft- sion and lack of referrals for supportive services in this area may be
versus-host disease (GVHD), negative appraisal of the transplant related to the patient’s embarrassment, the clinician’s lack of knowl-
experience, body image disturbance, fears of relapse and secondary edge, or the focus on other issues that may be interpreted as more
malignancies, 27–29 The threat of death continues to be real, and critical. Common sexual issues after transplant include vaginal
patients experience social isolation, bodily discomfort, major body dryness and distressing menopausal symptoms in women and erectile
image changes, and a sense of loss of control. These issues lead to a dysfunction in men. 40
myriad of emotions, including hope, anger, depression, anxiety, Patients who experience physical symptoms after transplantation
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anticipation, guilt, and joy. Khan et al identified the following may be at risk for long-term psychologic distress. Despite the
common psychiatric diagnoses with inpatient transplant patients: fact that patients are followed by transplant physicians longer than
adjustment disorder (40%), depression (23%), generalized anxiety patients with nonhematologic malignancies, this population often is
disorder (10%), acute psychotic disorder (10%), delirium (10%), and referred back to primary care physicians 1 to 2 years after transplant.
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depressive psychosis (7%). Kishi et al compared inpatient psychiat- Primary care clinicians do not have the knowledge or experience to
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ric consultations among transplant and nontransplant patients. recognize physical complications related to the effects of chemo-
Transplant patients differed on several characteristics: more frequently therapy, radiation, and GVHD, so ongoing communication between
white, less likely to have a previous psychiatric history, longer time the providers and the transplant team and center is imperative.