A primary focus of the assessment should be to ascertain the level of understanding patients and parents have about the HSCT and recovery process. Any questions, concerns, or gaps in knowledge, including misperceptions, should be addressed with further education provided by the HSCT team so that the patient and parents can provide informed consent and, when appropriate, assent to the HSCT (see Table 13.2 for educational tools and resources). In addition, having a developmentally appropriate understanding of the HSCT process better prepares children, adolescents, and young adults for the HSCT, which may help them cope or reduce anticipatory anxiety leading up to the transplant. For the patient, the extent of HSCT knowledge is dependent upon age or developmental level, and therefore, questions assessing the level of comprehension should be tailored accordingly. For example, younger to school-aged children want to be informed about how a treatment will make them feel in the present or immediate future, how the doctors and nurses will help them to feel better when ill, and who will take care of or be with them in the hospital. Therefore, for younger children, it is expected that they may understand the very basics of HSCT, such that they will be in the hospital for a long time, may feel sick at times, but will get medicine to help them feel better. In contrast, adolescents are typically able to cognitively understand the complexity and intensity of the HSCT process at a level similar to their parents and thus should be able to provide a more detailed description of the HSCT process.

When inquiring about the HSCT procedure, the psychosocial provider should gain a sense of whether the patient and parents understand the different phases of the transplant, including a general overview of the conditioning or preparative regimen (i.e., chemotherapy and total body irradiation versus chemotherapy only; number of days for conditioning), what occurs during the stem cell or bone marrow infusion (i.e., similar to an intravenous blood transfusion), and what happens after the infusion (i.e., waiting for engraftment, monitoring and treatment of infections or toxicities). Patients and parents typically describe the benefit of transplant to be a cure for their disease, whereas potential risks and side effects of HSCT are commonly discussed as death, symptoms such as nausea, pain, and/or fatigue, GVHD, infection, rejection or loss of graft, and/or long-term sequelae of treatment. Encouraging the patient and parents to discuss the process of arriving at the decision to choose an HSCT provides insight into the informed consent or assent process for the patient and family, such as whether the patient participated in the decision-making process, whether it was a mutual decision between the patient and parents, and what information or factors led them to the decision to proceed with HSCT. Patients and parents should understand any potential alternative options (e.g., palliative care) and therapies (e.g., chemotherapy only protocol) with associated benefits and risks of each option compared to HSCT. Patients and their parents should have awareness that they will be hospitalized for about 1 month and potentially longer based upon the patient’s medical needs. To promote adherence, it is important for the patient and parents to understand what the oncologist expects of them during the HSCT hospitalization and recovery, such as taking multiple medications several times per day, bathing, mouth rinses, physical activity or therapy, and compliance with vitals. Finally, patients and parents should have an understanding of the length of the recovery process, number of outpatient clinic appointments per week and what those appointments will entail, and isolation expectations and duration. Semi-structured, open-ended patient interview questions (with parallel parent questions) aimed at assessing comprehension of each of these domains may best capture the depth of understanding (see Table 13.1 for sample interview questions).

HSCT is an intensive treatment that is both physically and emotionally demanding. Not only do HSCT patients have to cope with painful procedures, treatment-related side effects such as nausea and vomiting, diarrhea and/or constipation, pain, fatigue, infertility, and worries about their health and survival, they also are isolated from school and friends and separated from family members during a lengthy hospitalization and recovery during which they are immunocompromised, all of which negatively impact their quality of life across physical, emotional, and social domains. Pediatric HSCT patients often experience increased distress and anxiety and lower health-related quality of life (HRQL) prior to their HSCT admission which extends through the acute phase of transplant and then begins to steadily improve 4–12 months post-HSCT before returning to baseline functioning by 1–3 years post-HSCT (Clarke et al. 2008; Packman et al. 2010; Tanzi 2011). Declines in social competence and self-esteem are also noted from pre- to 6 months post-HSCT (Phipps 2006). Risk factors for lower HRQL and negative psychosocial outcomes in HSCT recipients include older age at transplant, lower socioeconomic status, allogeneic (unrelated donor) transplant, presence of acute or chronic GVHD, pre-HSCT parental distress or maternal depressive symptoms, and pre-HSCT child distress or poor psychological functioning (Clarke et al. 2008; Packman et al. 2010; Tanzi 2011).

Given the multitude of HSCT stressors the pediatric recipient faces, it is important to assess the patient’s current and past psychological functioning, stress, and coping prior to HSCT, but also intermittently about once per week (depending upon needs) during the acute and recovery phases of transplant. HSCT recipients should be screened for internalizing (i.e., depression, anxiety) and externalizing (i.e., oppositionality, inattention, hyperactivity) symptoms, which may impact coping with HSCT. Information also should be obtained regarding the patient’s history of procedural distress, pain, and/or mood and behavioral side effects secondary to steroid treatment. An assessment of the patient’s current HRQL also will help the psychosocial provider ascertain the severity of the impact that the patient’s disease and previous treatment history has had in physical/functional, emotional, social, and practical domains. Screening may include both open-ended interview questions and quantitative questionnaires or checklists completed by the patient (when age appropriate) and parent, particularly for younger children (see Table 13.1 for examples of measures). There are a few validated measures that have been developed for pediatric patients who undergo an HSCT, primarily to evaluate HRQL in the HSCT setting [i.e., Behavioral, Affective, and Somatic Experiences Scale (BASES), Child Health Rating Inventories – HSCT module (CHRIs-HSCT), Functional Assessment of Cancer Therapy – BMT (FACT-BMT)]. A review of the patient’s preexisting mental health conditions, past or current participation in counseling services, past or current psychiatric medications or hospitalizations, and family psychiatric history should be conducted. For adolescent and young adults, it is additionally important to screen for past and current cigarette smoking, tobacco use, alcohol/illicit drug use, sexual activity, and suicidality or self-injurious behaviors (see Chapter 4 on Assessment).

There is a dearth of information related to the use of effective coping strategies in pediatric HSCT. HSCT recipients report using multiple strategies to cope with HSCT-related stressors. It is important to inquire what strategies patients have used to help them cope with illness-related stress, including prior hospitalizations, which can be promoted during transplant. Coping strategies may be cognitive, behavioral, social, or spiritual. Common coping strategies reported in clinical practice include distraction, engaging in hospital-based activities, reading, watching TV or movies, staying connected to or being with friends and family, online social networking, talking to others, and relying on faith and prayer (see Chapters 5 and 6 on Coping and Psychotherapeutic Modalities, respectively). Patients should be encouraged to discuss what activities they will be engaging in their hospital rooms on a daily basis and what items they will be bringing with them during the HSCT hospitalization to keep them busy. Similarly, it is important to inquire about any previous experiences with hospitalizations. This will help the psychosocial provider ascertain whether the patient and family have firsthand knowledge of what to expect with lengthy hospitalizations and chemotherapy side effects.

HSCT patients and their parent(s) face a challenging, complicated outpatient medication regimen once they are discharged from the HSCT hospitalization. Evaluation of medical adherence is one of the most essential domains to assess prior to an HSCT because it has the potential to directly impact treatment-related complications and HSCT outcomes. Because of the complicated daily medication regimen and lengthy recovery process, problems with medical adherence are not uncommon. A recent study found that adolescents who have undergone HSCT have difficulty adhering to the outpatient medication regimen (McGrady et al. 2014). Psychosocial providers should inquire about any past or current problems with pill swallowing, following the medical care regimen, listening to or complying with the instructions by the HSCT team, or missed clinic appointments. Communication with the referring medical provider may also be a helpful source of information to identify any adherence concerns. Any factors that may have contributed to adherence problems should be identified and intervened upon as soon as possible.

Positive social support is a key factor in patients’ coping with the stresses of HSCT (Bingen et al. 2012). Psychosocial providers should assess the level and quality of the support perceived by the patient and family and who is providing the most practical and emotional support to them. Support may be provided by a combination of family members, friends, school personnel, employer or coworkers, church or spiritual community, and/or neighborhood or surrounding community. Patients and families with limited support would benefit the most from consistent multidisciplinary supportive care services. Any stressors or barriers related to HSCT as well as non-HSCT stressors should be identified in order to potentially address or reduce these concerns prior to transplant whenever possible. For example, patients and their families often report financial strain related to previous medical treatment, potential loss of employment to care for the ill child, or health insurance problems, particularly for young adult patients who may be underinsured.

Evaluation of family functioning should include obtaining information about the family constellation/structure, cohesiveness, conflict, and expressiveness as well as parental adjustment, parent-child relationships, and sibling relationships. In addition, the psychosocial provider should ascertain whether there have been any family role changes and disruptions in the family’s daily life due to the patient’s illness and treatment. For families who live a distance from the transplant center, it will be important to assess where they will be residing (e.g., Ronald McDonald House) and who will be taking care of the patient’s siblings, when applicable. A qualitative assessment of pre-HSCT parental stress and coping and premorbid parental mental health history is crucial based upon previous research indicating that premorbid parental psychological functioning during the acute phase of transplant is a strong predictive factor in long-term parental adjustment after HSCT (Vrijmoet-Wiersma et al. 2009). Only parental and family history that is relevant to the child’s HSCT should be sensitively documented in the child’s medical records. Equally as important, both family and parental functioning prior to HSCT are predictive of child adjustment and HRQL after HSCT (Clarke et al. 2008; Packman et al. 2010; Tanzi 2011).

A comprehensive educational and cognitive assessment prior to HSCT can serve many purposes including determining the child’s understanding of the HSCT, school needs during and after the HSCT, and reintegration after the HSCT. As part of the pre-HSCT psychological evaluation and when insurance coverage permits, pediatric psychologists or neuropsychologists may also conduct cognitive and/or academic testing to directly evaluate HSCT candidates’ functioning prior to HSCT, which can later serve as a comparison for future testing after HSCT to determine if there have been any cognitive changes over time. Due to HSCT workup time constraints as well as the patient’s health at presentation, a comprehensive psychological or cognitive testing battery which would assess all domains that may be impacted by treatment may not be feasible. Because of this, an abbreviated testing battery is recommended to serve as a neurocognitive screen of the patient’s current abilities (see Chapter 10 on Neurocognitive Issues).

Previous research has established that neurotoxic chemotherapy and radiation (particularly cranial radiation) can negatively impact cognitive functioning years after treatment, known as “cognitive late effects” (for review, see Mulhern and Butler 2006). However, due to methodological challenges such as small sample sizes from single transplant centers, it remains unclear as to whether the treatment regimen (myeloablative chemotherapy, total body irradiation, corticosteroid treatment for GVHD) for HSCT is a sole risk factor for development of cognitive late effects or an additive risk factor for patients who received chemotherapy (and is some cases radiation therapy) prior to HSCT,such as in the case of patients with ALL. In a review of longitudinal studies, Phipps (2006) concluded that there is low risk for development of cognitive or academic problems for children who receive an HSCT at or above the age of 6 years, but this risk may be increased for children who receive an HSCT when they are younger than 5 years old and, in particular, 3 years old or younger.

Research indicates that parental and child distress, HRQL, and adjustment fluctuate over the course of transplant and recovery (Clarke et al. 2008; Packman et al. 2010; Tanzi 2011; Vrijmoet-Wiersma et al. 2009) and therefore should be evaluated pre-, during, and post-HSCT. As a result, weekly assessments are recommended, even if only for a brief “check-in,” during the acute and recovery phases of transplant, which can gradually become less frequent over time based upon supportive care needs and frequency of clinic appointments.