Personal factors
Disease factors
Physical factors
Female gender
Brain tumor or CNS-directed therapy
Poor health status
Preexisting conditions—mental illness, functional limits
Prolonged or intense treatments (e.g., bone marrow transplant)
Chronic medical conditions
Limited education or income
Cranial or pelvic radiation
Pain or disfigurement
Lack of social support
Residual disease/recurrence
Functional limitations (e.g., ambulation, communication)
Life stressors (e.g., divorce, unemployment)
Problems adjusting or adhering to treatment (e.g., medication nonadherence, substance abuse, extreme emotional distress)
Difficulties in self-care (e.g., dressing, eating, bathing)
Disabled status
Periods of Vulnerability
While physical and psychological adjustment often improves after completion of cancer therapy, subsequent life periods and transitions can be associated with greater vulnerability to psychological distress and adaptive problems. From a developmental perspective, Erikson’s theory of adolescent development (Erikson 1968) provides a useful framework for understanding how each new developmental period offers opportunities for reworking unresolved issues related to cancer. As cognitive capacities increase and social relationships change, the survivor may be prompted to think about their cancer experience in new ways. For most survivors, this reworking of the cancer experience may be subtle and lead to a sense of growth, but for others, there is the possibility that aspects of the cancer experience may reemerge later in life and, at times, lead to poor adaptation and to the development of psychological symptoms. Most survivors will pass through these vulnerable periods without significant distress; however, even those who had a sustained period of healthy recovery and good psychosocial adjustment are at a greater risk for new problems with psychological adaptation at particular life junctures.
For some survivors, the completion of therapy itself is an unexpectedly stressful time. Survivors who are greatly relieved to complete their medical regimen may also feel some anxiety around the sudden decrease in medical oversight, as well as some apprehension about leaving the “patient role” to return to the expectations of school and society. In some cases, survivors and their families speak of treatment as being such a central focus of their lives that it is only after its completion that they really process some of the emotional components of the cancer; this may lead to an increased sense of loss or depression. If the survivor has had a long treatment period during which they interacted predominantly with adults, they may upon the completion of treatment feel ill at ease with peers and unfamiliar with the latest trends within their peer group. For many young cancer survivors, the experience of returning to their regular school or peer group can feel bewildering, as they move from a context where they are the focus of intense attention and concern to being just one of the crowd. For young children, this loss of special status may present in the form of behavioral challenges (e.g., defiance, tantrums, withdrawal) as they react to the reintroduction of expectations and consequences that may have been suspended during the illness and attempt to adjust to a “new normal” (Labay et al. 2004; Bjork et al. 2011). For teenagers, difficulties during this transition period can include feeling isolated and misunderstood. In particular, patients who were treated for CNS tumors are less likely to be nominated as a best friend and are perceived as more sick, fatigued, and absent from school in relation to comparison peers (Vannatta et al. 1998).
Many survivors welcome an opportunity to move to a new school or living situation where their cancer history is not widely known as they feel it helps them move past being “the kid with cancer.” For some, however, moving into a new environment means having to give up a special status they may not have recognized they had, as well as the onslaught of new concerns about how and when to disclose their cancer history. As one 22-year-old survivor, John recalls, “When I got to college, I was just one of a sea of new students. I thought that would be great, but the work was really hard, and I started to realize I wasn’t prepared. My teachers and tutors in high school had cut me a lot of slack because of my cancer, and suddenly that help and support was all gone. Then when I tried to get to know people, it seemed like cancer always came up. What sports did I play, what was that scar from— inevitably I had to keep “coming out” as a cancer survivor and that was weird. At home, everyone knew me and I had never once had to tell anyone I had cancer, but in college, I was on my own and some people had really weird reactions. It became a big problem for me adjusting to college, and I ended up seeing a counselor first at the cancer center and then at school” (Recklitis and Liptak 2015).
Other major life changes, even very positive ones, can also prompt some new reflection about their health and questions of whether their cancer history can be a liability. For example, taking on a major new job role, starting a new relationship, and becoming a parent can be times that survivors find themselves worrying or reflecting on their health. As one survivor put it, “I never really thought much about my cancer, but when I got pregnant, it all came up. For 20 years, the fear that I might get sick again was way in the back of my head, and I did not even know it. Once I found out I was going to be a mom, it all came up and I kind of freaked out. I had to educate myself, see my doctors, and make sure I was really healthy and taking care of myself” (Recklitis and Liptak 2015) (Table 15.2).
Table 15.2
Common periods of vulnerability
Life transitions |
Transition off-treatment |
Decreased contact with medical professionals |
Greater integration with home and school routines |
Increased expectations and loss of special status |
Moving to a new environment |
Loss of special status |
Question of disclosing cancer history |
Need to reestablish academic accommodations in new school system |
Career changes |
Questions about insurance and employability |
Developing intimate relationships |
Questions about disclosing cancer history |
Concerns about body image, sexuality, and fertility |
Health related |
Medical care and information |
Regular medical follow-up and surveillance |
Cancer or other serious illnesses diagnosed in a friend or family member |
Notable cancer-related media event |
Physical health changes |
Change in health status or functional status |
New diagnosis of medical condition |
Recurrence of cancer or secondary cancer |
Case Vignette : Maria, a 22-Year-Old Survivor of a Low-Grade Brain Tumor
Medical History: Maria was diagnosed with a low-grade glioma at the age of 7 and was treated with chemotherapy and radiation.
Psychosocial Adaptation: As a result of her tumor and medical treatments, Maria suffers from multiple late effects including cognitive deficits, growth hormone deficiency, and left-sided weakness. Partially as a result of these very apparent challenges, Maria has had difficulty initiating and maintaining age-appropriate social relationships. She relies heavily on her parents for both emotional support and financial support. Maria strongly identifies herself as a cancer survivor; the majority of her nonacademic activities revolve around volunteering for her treating hospital, attending camps for cancer patients and survivors, and engaging in organized social activities for cancer survivors. She talks about being seen as “different” and “less than” her more successful and physically attractive siblings and cousins. Maria will be graduating from community college this year and presents with significant anxiety and ruminative worry around this transition. As a result, she initiated mental health services at her treating hospital, citing that the providers at the cancer center are “the only people who understand my medical history and what I am going through.” During a brief course of treatment, Maria encountered difficulties utilizing cognitive-behavioral strategies to address her anxiety. Despite reassurance from her family that their support would continue well beyond college, Maria continued to perseverate on how she would cope with independence and adulthood after graduating. Maria arrived to most sessions reporting chronic low mood and was frequently tearful throughout sessions. After approximately eight sessions, psychopharmacological intervention as well as more intensive, community-based treatment was recommended. Maria’s mood and anxiety have now stabilized with the help of medication. In addition, she is receiving services from a community-based therapist who can provide a more appropriate level of mental health care than what can be offered through the cancer center.
Comment: Maria’s case demonstrates how the cognitive, developmental, and physical late effects of cancer can lead to feelings of isolation and hopelessness, particularly during crucial times of transition. For most young adults, the completion of college is a time of both excitement and anxiety, but for survivors who so clearly benefit from the structure of school, the uncertainty about the future can highlight limited coping resources and exacerbate preexisting psychological difficulties. Maria’s connection to the cancer center allowed her to accept the initial psychological support offered and incorporate the recommendations made by her team that more intensive community-based interventions would be of benefit.
Psychosocial Care in the Context of Survivorship
After completion of cancer therapy, pediatric cancer patients typically continue to have regular oncology follow-up visits, though the frequency of visits decreases over time depending on the patients’ diagnoses and individual needs. For our discussion of psychosocial care for survivors, we focus on the needs of long-term survivors who are no longer being regularly seen by an oncology provider and are generally 2 or more years from completion of cancer therapy. In some treatment settings, these survivors will continue to be followed by their treating clinical team, but in others, they may be provided with additional survivorship services or transferred to a specialized survivorship clinic inside or outside of their treatment center. Regardless of the type of setting where these long-term survivors are being seen, they are typically seen only once a year, and psychosocial care makes up one small but important part of the agenda for the annual survivorship visit. In providing psychosocial care to childhood cancer survivors, part of the conceptual and practical challenge is to consider what psychosocial services will be provided and how they will be integrated into survivorship care more broadly.
Conceptually, psychosocial care in the survivorship setting can be viewed as a bridge between the oncologic care and the specialized mental health care that can be provided in the community, similar to models of mental health services adapted for primary medical care settings (Collins 2010; Knapp and Foy 2012; Mental health: Integrated approach 2012). As discussed, most survivors adapt well after completion of cancer treatment and will not require psychosocial interventions, but identifying those survivors or families who do require mental health services is a priority. Cancer centers understandably assign most of their limited psychosocial resources to care for on-treatment families, and many families live at a considerable distance from their cancer center, two practical factors that strongly influence the scope of psychosocial care that can be successfully delivered in the survivorship context. While delivering a full range of specialty mental health services in the survivorship setting is not practical or necessary, utilizing behavioral health expertise is important to help identify and support those survivors with psychosocial needs and to arrange for community-based services (e.g., outpatient mental health, school-based services, community-based support groups, or government agencies). For the majority of survivors who are generally adapting well, the goal is to provide supportive services, education, and anticipatory guidance to address any subclinical adjustment problems and prevent the need for specialized behavioral services in the future. For the minority of survivors with active psychosocial needs, the goal is to identify these needs and refer them to appropriate services. The specific types of services offered to survivors may vary considerably, but this combination of bringing selected psychosocial services to the survivorship medical care setting and referring out to community-based care is common to most programs.
Through adapting models of behavioral health care for primary care settings (Collins 2010; Mental health: Integrated approach 2012; Knapp and Foy 2012), we have identified three central aims for optimal psychosocial care in the cancer survivorship setting:
1.
Supporting the oncology provider in identifying survivors with significant psychosocial needs
2.
Collaborating with oncology providers to assess and manage survivors’ psychosocial needs
3.
Referring survivors for psychosocial care in the community
Supporting oncology providers in identifying survivors with psychosocial needs may be the most important of these three aims since survivors have infrequent clinic visits and needs not identified are likely to remain unaddressed and may intensify over time. Oncologists and nurse practitioners are usually the first providers who assess survivors’ psychosocial needs, both because psychosocial function is an important element of holistic care and because most survivorship programs will not be able to provide an individual assessment with a mental health professional for each survivor. Even when psychosocial providers do not personally assess each survivor who comes into the clinic, they can improve case identification in a clinic by helping determine the needs most important to assess (e.g., cognitive, emotional, social) and, in conjunction with the medical team, develop a system for identifying those needs. This may include developing administrative procedures to ensure that all survivors coming in for a clinic visit are offered a standardized psychosocial assessment, for example, by including questions about psychosocial function (e.g., anxiety, depression, school, and social functioning) and health behaviors (e.g., exercise, smoking, alcohol, and substance use) on the health history or intake forms used in the clinic. In addition, psychosocial providers can talk with medical providers about how they can routinely inquire about psychosocial function during survivorship visits and even provide sample questions or coaching about how to sensitively raise these topics (see Table 15.3). Integrating psychosocial assessment into existing clinic procedures increases efficiency and may also destigmatize potentially sensitive topics by making them a routine part of survivorship care.
Table 15.3
What do you say? Conversation starters for medical providers
Outside of your physical health, how are you doing? |
What about your mood? Everyone has bad days, but is your mood very down or depressed for more than a day or two at a time? |
How about feeling really tense or anxious—is that a problem for you? |
When you filled out the emotional health questions, did any of those questions seem to apply to you? |
Are there certain goals you are working on in your school/work/personal life? |
Survivors sometimes tell me they think their treatment changed the way they look or how they feel about their body—is that something you ever think about? |
Do you find yourself thinking about cancer frequently? Do these thoughts ever bother you or get in the way of your sense of pleasure/sleep/daily functioning? |
Sometimes when people are feeling really burdened, they tell me they feel hopeless or like they are not sure life feels worth living—do you ever feel that way? |
Is there anything else about how you are feeling or getting along at home, school, or work we should discuss? |
Use of Standardized Rating Scales
In some settings, psychosocial clinicians may also help implement self-report symptom rating scales that ask survivors or their parents to report on emotional health, behavior problems, and school difficulties. While screening measures should not be relied on as the sole source of psychosocial information, they can be efficient tools for collecting information and starting the conversation about psychosocial health. To be practical for clinical settings and minimize survivor burden, brief measures (<20 items) have generally been favored, though there is likely to be a trade-off between brevity on the one hand and accuracy and scope on the other. Short measures can have limited scope, however, so that only one or two symptom domains (e.g., fatigue, pain, depression) may be covered. In addition, very brief scales (<5 items) can have limited psychometric properties, and longer scales may be more successful at differentiating between significant and nonsignificant levels of distress. The one-item distress thermometer has been widely used in cancer patients, but reports of its sensitivity to clinical distress have varied across populations and studies with cancer survivors indicating it may not be well suited for this population (Recklitis et al. 2007; Merport et al. 2012). In selecting a self-report screening measure, providers should consider instruments that focus on problems likely to be most relevant to their particular population. In many survivor groups, depression and anxiety will be common concerns and because studies show cancer survivors are at higher risk for suicidal thoughts and behaviors, some consideration should be given to including feelings of hopelessness and suicidal thoughts. In some survivor groups, other symptom areas such as cognitive problems and substance abuse may be more relevant to assess, and each of the selection of screening measures should be tailored to the survivor population being followed. In our center, we have found that both survivors and parents are open to using these checklist measures, and they can be readily integrated into a survivorship visit (Recklitis et al. 2003; Liptak et al. 2012). Parent report measures are most useful for younger survivors (<10) who may be burdened by a paper-and-pencil form. Parent report may also be useful for assessing behavioral and school problems in survivors across ages. In adolescent and young adult patients, self-report measures are especially useful for assessing internalizing symptoms like anxiety, depression, social isolation, and hopelessness, as these may not be fully appreciated by parents (Recklitis et al. 2003; Liptak et al. 2012).
Whenever self-report rating scales are applied to cancer survivors, caution should be exercised in interpreting these measures as they are applied to cancer survivors. Reliability and validity of tests will vary in different populations, and several studies have indicated that previously validated tests may operate differently or require different cut-off scores to be used in cancer patients or survivors (Johnson et al. 1996; Zabora et al. 2001; Recklitis and Rodriguez 2007). Until research on cancer survivors has provided specific validation of the instrument and clinical cut-off scores in cancer survivors, clinicians should carefully consider how to interpret both negative and positive screening results and should work closely with a mental health consultant familiar with clinical screening tools to select and implement this kind of screening in a clinical environment. These measures alone may not be sufficient for evaluating psychosocial needs of individual survivors, but they can help inform the psychosocial assessment process in a number of ways. For example, using these forms routinely with all survivors reminds health-care providers to discuss psychosocial concerns they might otherwise neglect, and it allows at least some survivors an outlet for reporting on problems they may not bring up unless directly asked (Recklitis et al. 2003; Liptak et al. 2012). Being available to consult with medical providers and to provide assessment of individual survivors is itself a critical component of psychosocial care in the survivorship setting and also supports the first goal of problem identification. Oncology providers are often invested in talking with patients about their psychosocial needs but may be reticent to do so without an efficient means for providing follow-up for problems that may be identified. Ideally, mental health clinicians should be available to provide both individual care and group care in the survivorship setting. This may include support groups or psychoeducational programs, consultation to providers or survivors about community resources, and follow-up assessments for identified problems. In some cases, the psychosocial clinician may see survivors in a scheduled appointment similar to what would be provided in an outpatient mental health setting, but the model of survivorship care encourages clinicians to be very flexible in how, when, and where they deliver care. Depending on the need and practical considerations of a particular clinic visit, clinicians may see survivors for brief visits (15–30 min) at the time of a medical visit, with or without family members or medical providers present, and may use telephone and e-mail contact as a way of providing information, ongoing monitoring, or following up on a referral plan. To illustrate our approach to assessment, supportive care, and referral, below we provide a description of a typical psychosocial visit that might occur when a survivor is referred for psychosocial assessment. While many survivorship visits will follow this approach, it is also important to appreciate that psychosocial care can be delivered in a variety of ways, some of which are quite brief and have targeted goals. For example, survivors who are not reporting any significant distress but are interested in finding a community-based resource, such as a smoking cessation group, a book on effective parenting, or a survivor support group, may have information provided to them in a brief, informal interaction or in a follow-up phone call or e-mail.
During the Survivorship Visit
The clinician meeting the cancer survivor should enter the appointment with the primary aim of conducting a brief assessment and triaging any identified psychosocial needs. It is important that the clinician not be burdened with the expectation that they must complete a comprehensive psychological evaluation during the visit. As survivors often wait for professionals to initiate the discussion of psychosocial challenges, the experience of meeting with a clinician for the purposes of discussing their psychosocial needs can often be one of the first times that they have had the opportunity to raise such concerns (LAF 2004; Detmar et al. 2000; Greenberg 2004). Therefore, the clinician should utilize the survivorship visit as an opportunity to ascertain where the patient’s psychosocial needs may be best met and how to encourage the patient to initiate recommended services.
Immediately prior to the visit with the patient, it is standard practice to acquire as much information as possible from as many different sources available about the patient’s status including the reason for the referral. The opportunity to have a brief conversation with the referring provider offers a rich understanding of the specific patient’s needs. Consulting with the oncology provider prior to seeing the patient, either in person or over the telephone, should be prioritized. Second, in some clinical settings, there may be psychosocial questions that are already integrated into patient medical history forms. The use of self-report measures can contribute to good clinical care as they provide a less intimidating venue for the patient to endorse clinical concerns and can act as helpful cues to initiate conversations. However, clinicians must remain wary of both the potential for false positives and the minimization of symptoms on self-report. While in many cases, the psychosocial clinician can obtain a sense of the clinical needs prior to meeting the patient, there is not always a clear sense of why the patient may have requested your services. The survivorship visit presents a unique opportunity during which the patient may be returning to a trusted medical facility, and this can facilitate their seeking psychosocial support.
During the visit, there are a number of key thinking points for the clinician to consider. This list is not intended as a comprehensive assessment of survivors’ emotional health, but rather areas that the clinician can think about as they discuss the survivor’s evolving adjustment:
What are the primary presenting symptoms?
When was the onset of the presenting symptoms? Were there any identifiable precipitants?
What is the patient’s history of mental health disturbances and/or treatment?
What is the level of current impairment? Is there a need for immediate triage?
Are there comorbid physical health issues that are relevant to consider?
Does the patient have relevant cancer treatment-related late effects? For example, are they experiencing cardiac, hormonal, or neurological disturbances that may be impacting their psychosocial function?
Is the patient taking any medications that may be affecting their mood state?
Did the patient experience any developmental challenges as a result of their cancer diagnosis and treatment? For example, did they miss extended periods of school that may have impacted their social development?
How are the patient’s current sleeping habits and appetite?
Is the patient actively engaged in work/school activities?
Does the patient have concerns related to her social and family relationships?
Does the patient have a support network that they can rely upon?
Initiating a conversation about psychosocial challenges in a medical setting may be uncomfortable. Psychosocial providers can frame their role as providing an integrative survivorship evaluation in collaboration with the oncology staff. In this role, the psychosocial clinician supports the oncology team in ensuring that mood-related issues do not impact the patient’s quality of life and vice versa. As patients may not be accustomed to psychosocial services in an oncology setting, they may believe that they are limited to reporting physical health issues; it is the psychosocial provider’s role to help separate physical from psychosocial needs. Whenever written assessment is used, reviewing responses and discussing them directly with the survivor is essential. By way of introduction, a provider may simply ask, “When you completed the questions about mood and emotional functioning, did any of those questions seem to apply to you?” The provider can then quickly scan the responses to the self-report items and inquire about any that were endorsed.
One challenge during psychosocial visits is the extent to which parents and caregivers play a role in the ongoing care of an adolescent or young adult survivor. Unless there is a clear clinical reason to do otherwise, we suggest starting with the entire family but letting family members know that they may be asked to step out for some part of the meeting so that the individual survivors can be met with alone. This will provide an opportunity to observe interactions and potentially obtain valuable information about family dynamics that may play a role in the patient’s psychosocial functioning. It is important that the focus remains on patient-related issues as there is the possibility that parents may use this meeting as an outlet for their individual concerns. Though these challenges can certainly play a role in parents’ ability to facilitate support for the survivor, it is important that the survivor has the opportunity to focus on his current needs. Particularly for adolescents and young adults, and those who are adequately developed both cognitively and emotionally, it is important to meet with them privately after disclosing confidentiality limitations. An individual assessment with the adolescent or young adult survivor can provide critical information about their well-being as well as any challenges they may feel uncomfortable disclosing in the presence of family members.
Though the assessment is often limited to the survivorship visit, it is not uncommon that a clinician will require additional follow-up to fully explore the survivor’s needs and how best to guide them in aftercare. While conducting the assessment, one should consider whether to seek consultation from the survivor’s oncology team or with other medical staff in order to clarify presenting concerns. In addition, it is also within reason to request that the patient return for a follow-up visit if possible. It will be important that one outlines the importance of returning for further evaluation and provides aims for a follow-up meeting.
Case Vignette : Sarah, a 23-Year-Old Survivor of Osteosarcoma
Medical History: Sarah was diagnosed with osteosarcoma at the age of 14 and treated with surgery and chemotherapy. Fortunately for Sarah, she has experienced relatively limited physical late effects of treatment.
Psychosocial Adaptation: Sarah, now a bright, articulate, 23-year-old survivor, comes to a routine survivorship clinic visit and reports to her oncology nurse practitioner feelings of depressed mood, lack of energy, and problems sleeping. She was treated 5 years ago in a college counseling center for depression. A social worker in the survivorship clinic sees Sarah for 30 min in the survivorship clinic for an interview and makes the following assessment and recommendation: Sarah’s depression is not currently severe as she is working and maintaining most social activities and her symptom reports on a rating scale and in person suggest moderate depression. She has active supports from her roommates and has no current or past suicidal ideation or impulses and no hopelessness, so the need for treatment is not urgent or emergent. Sarah is worried about her depression but ambivalent about returning to treatment and unsure of how to access mental health care now that she is living on her own. In their discussion, it becomes clear that Sarah is ambivalent about returning to talk therapy but more open to restarting her antidepressant medication. The social worker suggests that as a first step Sarah contact her PCP to discuss medication for her symptoms and that she and Sarah follow up in 4 weeks by phone to see if Sarah has seen her PCP and to reassess her symptoms. Sarah seems relieved that she can do something about her depression without getting back into talk therapy and agrees. The social worker ends the session by giving Sarah her card with contact information, a teaching sheet about how to access outpatient mental health services, and also an informational flyer about support groups for people with depression including suicide prevention hotlines. The next day, the social worker copies the nurse practitioner on an e-mail she sends Sarah reiterating the plan and encouraging Sarah to contact her prior to the 4-week follow-up point if needed. After 4 weeks, the social worker calls and e-mails Sarah as agreed to, and Sarah reports she has restarted her antidepressant medication and is hopeful she will be feeling better soon. The social worker leaves a phone message and an e-mail offering to follow up with Sarah again in person or by phone but does not hear back from Sarah. At Sarah’s next annual oncology follow-up visit, the social worker briefly joins the nurse practitioner, and together, they ask about her depression. Sarah reports she is continuing to take her antidepressant medication as prescribed by her PCP and that her symptoms have improved. She acknowledges that she has “issues” on her mind and that she will return to counseling to deal with them “someday.” The social worker praises Sarah’s ability to get herself the care she needs and offers to be available in the future if Sarah is looking for additional support or counseling.
Comment: Sarah’s case is typical in that mild to moderate depressive symptoms are common in the general population and in young adult cancer survivors. Psychosocial intervention for Sarah is briefer than it would be in a mental health clinic and may take place with a medical provider in the room. The goal here is not to provide her with specialty mental health care, but to decide if she needs it. Because Sarah is verbal and relatively high functioning, a focal assessment of her depression can be completed in a short period of time using an interview and a symptom rating scale. Similarly, with some support and instruction from the social worker, Sarah is able to advocate for her needs and arrange a visit with her PCP. Some survivors would require a more in-depth assessment and would be less successful at implementing recommended follow-up, but many survivors like Sarah can make use of brief interventions to make important changes. Like many young adults, Sarah is not sure she wants to follow through on all recommended care (i.e., talk therapy in addition to medication), and the team responds to this by recognizing her autonomy and offering future opportunities to revisit her choices.
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