Psychosocial Aspects Of Hematologic Disorders

Time of Diagnosis

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 plight. It is a time of intense distress and likened to a personal disaster in the patient’s and family’s life. Often these patients have experienced vague symptoms such as fatigue for weeks or even months prior to diagnosis with treatment and reassurance for presumed non–life-threatening illnesses. Oftentimes, a large majority of patients may have had their concerns dismissed for many months, and then subsequently the ultimate diagnosis of an unexpected, catastrophic illness can feel even more blindsiding. Moreover, there are multiple personal and cultural factors that may profoundly influence the patient’s response to their cancer diagnosis. Being aware of the patient’s exposure to cancer in the past (e.g., history of loved ones with a cancer diagnosis) and the meaning of their cancer experience may provide insights into their initial response. Despite the inevitable psychosocial challenge of getting diagnosed with a hematological malignancy, it is well documented that many patients ultimately manage effectively with their diagnosis by employing a variety of coping mechanisms and skills.

Although distress at diagnosis can sometimes translate into potential psychiatric diagnoses (e.g., mood disorders), most patients will not develop full-blown psychiatric disorders unless they likely had undiagnosed psychiatric symptoms prior to their cancer diagnosis. Risk factors for a psychiatric disorder at the time of diagnosis include prior psychiatric history, gender, social and psychologic factors, disability, and avoidant coping. Careful assessment of the patient’s reaction is important, particularly as initial psychological reactions are often predictive of later adaptation and coping in survivorship. Early assessment by clinicians can help to identify patients at risk for adjustment challenges and psychiatric disorders—these patients, in particular, will benefit from early psychological support ( Box 98.1 ).

Compared to patients with solid malignancies, patients with hematologic malignancies often need immediate oncologic treatment. The period from the time of diagnosis through the initiation of treatment is characterized by fast-paced medical evaluations and treatment planning—the rushed development of new relationships with unfamiliar medical personnel, and the need to integrate a barrage of information can be at best frightening and confusing. During this time of diagnosis, many providers convey large amounts of information as part of treatment planning. It is not always easy for patients (especially those with limited health literacy) to assimilate the information, prioritize their problem-solving behaviors, and articulate their preferences. Consequently, providers often repeat information at each contact and inquire about the patient’s and caregivers’ understanding of facts and treatment options. Patients and their caregivers describe a state of numbness during this phase and that information is not thoroughly processed or understood—clinicians must consider this added barrier to communication when counseling patients and their caregivers.

Clinicians have an important role in monitoring and possibly mediating psychosocial adjustment in presenting an initial diagnosis of cancer to patients. If patients have a clear explanation of their condition while encouraged to maintain hope, the initial reaction of shock, fear, and desperation can foster optimism about treatment. Clinician awareness of the unique meaning that patients ascribe to their cancer diagnosis is also vital. Patients who have a pervasive and unyielding negative affect that persists long after the crisis of diagnosis may require ongoing psychosocial monitoring and referral for services and supportive interventions throughout their treatment and disease course.

Caregiver distress assessment during this diagnosis phase is also essential, especially as caregivers are a significant source of social support for patients during treatment and in recovery. Studies have shown that caregivers share similar rates of psychosocial distress. Psychological distress is easy to assess in patients and caregivers. Hence, timely evaluation of distress and referral for psychological support during this period is critical to adequate coping throughout the patient’s course of illness.

Treatment

Active treatment of cancer usually initiates another acute phase of the cancer experience. Psychosocial factors are critical parameters in deciding which treatment is best for an individual patient and should be considered alongside all aspects of medical/surgical treatments in the development of the treatment plan. Empowering patients in their own treatment by involving them in decision-making can help to mitigate some aspects of the psychosocial distress. Often, patients react to a diagnosis of cancer with feelings of fear and helplessness. In this vulnerable state, patients may believe that complete reliance on the oncologist is necessary. A patient may look to the primary oncologist for a curative treatment that also can preserve their quality of life. Combating feelings of helplessness during this period can help patients alleviate anxiety and possible depression. A member of the clinical team who has established treatment alliance with the patient is best poised to explore distress that could accompany treatment. A concerted effort to partner with patients while balancing patient autonomy during treatment planning can be beneficial. Providing patients and their caregivers with accessible information about their treatment options often alleviates anxiety and uncertainty in empowering them to feel more in control.

It is also important to engage caregivers and families during treatment planning. Caregivers play a crucial role during the treatment phase of cancer care since patients rely on their caregivers to adhere to different aspects of their treatment including follow-up visits, medication management, and maintaining quarantine status. Assessing for economic, social, and relationship stressors among caregivers is also important as these external factors can exacerbate psychological stressors during the treatment phase. Patients and their caregivers should be made aware of the plethora of resources available for support, including patient and caregiver support groups.

Psychological Considerations in Hematopoietic Stem Cell Transplantation

Anxiety is usually heightened during the conditioning phase (or minus days) of HSCT due to anticipation of how the transplant would be tolerated. The infusion of stem cells can be a special moment for patients, some of whom refer to the date of transplant as a “birthday” or special anniversary date. Some institutions offer a “blessing” of the stem cells by a member of the spiritual care team prior to the transfusion. Patients are sometimes surrounded by family, friends, and caregivers for the transplant. Attention should be paid to any special relationship between the patient and the marrow donor (i.e., related donors in allogeneic transplantations) as that can impact distress levels going into the transplant.

Patients are particularly vulnerable to psychological distress during the engraftment phase due to several factors. First, patients experience a high physical symptom burden including fatigue, nausea, anorexia, pain, diarrhea, and fevers, most of which are side effects from the conditioning regimen. Although some patients attribute these physical symptoms to “healthy” bone marrow, these physical symptoms heighten distress during the transplant hospitalization. Patients are most vulnerable to infection while awaiting engraftment, requiring strict isolation, limiting interactions with friends and family, all of which undoubtedly contribute to distress. Body image (e.g., hair loss, cachexia, steroid-related changes) and functional changes (e.g., severe fatigue, bedridden status, cognitive impairment in setting of delirium) are also sources of significant psychological distress; though these changes (at least in their present severity) are temporary, patients may experience them as a herald of permanent change. Hence, gentle reminders of the typical physical symptom burden associated with the transplant, especially those symptoms that are usually temporary, could reduce patient distress during the engraftment phase.

Khan and colleagues identified the following common psychiatric diagnoses among patients hospitalized for HSCT: adjustment disorder (40%), depression (23%), generalized anxiety disorder (10%), acute psychotic disorder (10%), delirium (10%), and depressive psychosis (7%). Notably, undiagnosed and untreated pre-transplant psychiatric disorders constitute a significant proportion of psychiatric diagnoses identified during the transplantation process. The prevalence of psychological distress that does not meet diagnostic criteria has been identified as even higher: depressive symptoms in 35%, delirium in 35%, and posttraumatic stress disorder (PTSD) in 20%. Kishi and colleagues compared inpatient psychiatric consultations among transplant and nontransplant patients. Transplant patients differed on several characteristics: more frequently White, less likely to have a previous psychiatric history, longer period between admission to consult, more delirium, and more socioeconomic and health-related distress.

Typically, patients perceive their quality of life to be worse during the first year post-transplant compared to their quality of life pre-transplant. The psychological distress patients experience in the acute and chronic post-transplant phases may differ. The first 100 days after transplantation are demanding, with at least twice weekly outpatient visits, and isolation requirements (e.g., restriction from contact with large numbers of people or areas with crowds, including restaurants). Factors associated with distress in the acute post-transplant phase include persistent physical symptoms, slow physical recovery, increased treatment-related toxicity, body image disturbance, and lower performance status. In addition, patients often grapple with the fear of relapse and/or secondary malignancies. The post-transplant period could also entail complex medication regimens (e.g., steroids, tacrolimus) that have neuropsychiatric sequelae including but not limited to mood disturbance, anxiety, psychosis, neurocognitive dysfunction, and posterior reversible leukoencephalopathy syndrome. A comprehensive discussion of the neuropsychiatric complications of HSCT is beyond the scope of this chapter.

The chronic post-transplant phase comes with its own set of complications. Although most patients gradually improve their performance status, there is often discordance between the patients’ pre-HSCT expectations and the everyday symptoms that limit their physical abilities. Distress associated with cognitive dysfunction is also repeatedly reported by patients as they return to the workplace or reenter school. Educating patients about common short-term neurocognitive side effects can reduce anxiety. Further, neurocognitive side effects of treatment (e.g., diminished concentration, short-term memory loss, decreased speed of information processing, and loss of effective problem-solving abilities) can be long term in high-risk patients but are mostly temporary. Ongoing physical and cognitive impairment often impact longstanding roles in relationships and vocations that can unleash existential anxieties related to isolation and meaning.

Sexual dysfunction is a common long-term side effect of HSCT in the setting of high-dose cytotoxic chemotherapy and total-body irradiation. Commonly reported sexual symptoms among HSCT patients include decreased libido, vaginal alterations, erectile and ejaculatory dysfunction, premature menopause, dysregulation of sexual hormones, dyspareunia, and infertility. Despite these known symptoms, sexual side-effects are inadequately assessed and managed in patients undergoing HSCT. Clinicians’ proactive approach to exploring these problems will help reduce patients’ embarrassment about discussing sexual issues and function. Barriers for discussion and lack of referrals for supportive services in this area may be related to the patient’s embarrassment, the clinician’s lack of knowledge, or the focus on other issues that may be interpreted as more critical.

The financial burden for patients who undergo HSCT can be overwhelming, including medical expenses for the patient and marrow donor in the case of an allogeneic HSCT, potential travel expenses, and loss of income for other caregiving family members. Patients and their immediate families are often geographically distant from their usual support systems due to the distance from their home to the HSCT center. In some cases, family members who have not been close in the past may be forced to interact with each other, leading to additional stress.

Researchers have described the following factors as predictors of poorer quality of life in patients 1 to 5 years after transplant: diagnoses of anxiety and/or depression, younger age, long-term sequelae, chronic GVHD, unemployment, lower income, poor functional status, family/caregiver distress, and short follow-up by the treatment center. Psychosocial factors have been shown to directly impact medical outcomes. Patients considered higher psychosocial risk had higher readmission rates 90 days after transplant. Patients who experience depression in the first year also have a higher mortality rate.

The American Society for Blood and Marrow Transplantation (ASBMT) consensus statement recommends annual evaluation of patients’ psychological status. Health care providers must have a high level of vigilance to assess depression in both the patient and caregiver years after transplant, with clinical assessments recommended annually after transplant. One study reported that 43% of long-term HSCT survivors with an average of 3.4 years after transplant had clinically significant global psychologic distress. Despite this distress, only 50% of the patients received mental health services. Patients who have undergone HSCT are at a higher risk of PTSD, which has recently been reclassified to include life-threatening medical illness and treatment as qualifying stressors. The prevalence of PTSD in patients who have undergone HSCT is 20% and does not correlate to patient age. PTSD symptoms are similar to patients who do not have cancer, and frequently include nightmares and emotional hypersensitivity.

The concept of posttraumatic growth (PTG) after transplantation has been evolving. By definition, the potential for PTG requires that patients experience a stressful event and then subsequently experience positive psychologic outcomes or benefits. As early as 1996, Fromm identified that positive sequelae are possible after transplantation, including the development of a new philosophy of life, greater appreciation of life, making changes in personal characteristics, and improving relationships with family and friends. Potential predictors of PTG among patients who are post-HSCT include good social support, little avoidant coping, younger age, less education, greater use of positive reinterpretation, problem solving, seeking alternative rewards, more stressful appraisal of the experience, and more negatively biased recall of pretransplant levels of psychologic distress. Discussing the PTG potential with patients and making referrals for counseling to experienced clinicians who are aware of the potential for PTG are essential.

Although patients report long-term psychosocial effects after transplantation, they may be reluctant to accept help and fail to access psychological resources and social support. These patients must be encouraged to use resources and seek psychological support because this experience may impair the patients’ and families’ ability to cope with life after transplant. In an article about HSCT patients’ experiences with a support group, Sherman and colleagues identified the themes of meaning and changing of perspectives as patients expressed their struggles with redefining themselves, their priorities, and their values. Some patients wanted to change their former values and behaviors. The support group experience may be therapeutic for patients who often do not have physical signs of transplant to the untrained eye but continue to experience increasing or unresolved psychological and physical issues. Sharing a common experience may encourage patients to believe that their symptoms and feelings are not unique and may decrease their feelings of isolation.

Immediate Period Following Diagnosis and Treatment

As the treatment and acute side effects improve and subside, patients often feel that the whirlwind has passed, only to be confronted with an uneasy silence. Weeks and months of clinic and physician appointments, infusions, and admissions stop or trickle to a small stream of appointments. Families who have been functioning on a grinding schedule of crisis mode find the change almost paralyzing. Adding to this halt of activity, health care providers have a tendency to limit their contacts when the patients’ physical status has stabilized. This is a critical time when psychosocial interventions and supportive services from other members of the health care team must be instituted for patients and family members to deal with the uncertainty and anxiety of waiting. Fears and anxieties change from fighting the disease to returning to life. Due to the decreased amount of contact with the primary treatment hematologists, patients and families may perceive a withdrawal of support from the medical team. Long-term psychosocial health of the patient and family is affected by the meaning ascribed to the cancer experience, fear of recurrence, support of the family, demographic factors, and financial stressors. This transition time is pivotal for patients' long-term quality of life. Surveillance with specific questions to access the need for referrals can have lasting positive outcomes.

Unlike other patients with cancer, patients with hematologic malignancies who have undergone HSCT are especially vulnerable in the early chronic recovery phase because most patients have to still grapple with integrating into life with some restrictions about activities as their immune system fully recovers. Additionally, some patients still experience anxiety about returning to their baseline level of activity and interacting with their environment due to persistent fear around the higher risk of infection.

Time of Relapse

For many patients, disease relapse represents a more aggressive malignancy than anticipated and can be more threatening and psychologically tasking than the initial diagnosis with cancer.

With the progression of the disease, patients often report upsetting experiences of uncertainty, frequent pain, diminished function, decreased independence, and disability. The medical workup itself can be difficult and anxiety provoking, and psychosocial problems experienced at the time of diagnosis frequently resurface, often with greater intensity. The shock and depression that can accompany disease relapse forces patients and their caregivers to reevaluate the future. In spite of the overwhelming nature of the psychosocial responses, however, most patients cope effectively with disease relapse and intense emotions do not necessarily equate with maladaptive coping.

An essential goal in the psychosocial treatment of patients with advanced cancer is optimal symptom management with robust evidence suggesting symptom management is positively correlated with quality of life. However, symptom management can be less prioritized as despairing patients and their families prioritize fighting the disease with aggressive treatment. Patients and families often request participation in experimental protocols, even when there is little likelihood of extending survival. Controversy continues about the efficacy of such therapies and the role health care providers can play in facilitating patients’ choices about treatment options. Clear communication about treatment goals and expectations is essential between patients and their care team. Robust evidence suggests that most patients and their families prefer timely and realistic information about their prognosis. However, most patients with aggressive malignancies do not initiate conversations about their treatment intent and end-of-life care goals.