Psychological Aspects of Long-Term Survivorship

(1)

Contents

19.1 Psychological Symptoms

in Childhood Cancer Survivors . . . 296 19.1.1 Depression and Behavioral Disorders . . . 296 19.1.2 Posttraumatic Stress . . . 296 19.2 Quality of Life and Functional Impact

of Cancer . . . 298 19.3 Effects on Social Development . . . 299

19.3.1 Social Consequences

for Survivors of Non-CNS Malignancies . . 299 19.3.2 Social Consequences

for Survivors of CNS Malignancies . . . 299 19.3.3 Social Consequences

for Survivors’ Family Members . . . 300 19.4 Implications for the Provision

of Follow-Up Care . . . 300 19.5 Research and Practice:

Developing Interventions

Targeting Psychological Late Effects . . . 301 19.6 Conclusion . . . 302 References . . . 302

It can come as a surprise to survivors and their families that cancer does not end when treatment ends, and that life does not automatically return to normal.

Instead, as families manage the many transitions that accompany the end of treatment, they ﬁnd that cancer survivorship has its own set of medical and psychological issues. Medical screening continues – ﬁrst, for disease recurrence and, later, for the emergence of medical late effects and longer-term psychological reactions. For this reason, it may be more accurate to conceive of cancer survivorship as a stage in a life- long chronic illness, rather than as an acute illness that ends with “cure” or some other arbitrary end point [45]. The goal of this chapter is to summarize psychological aspects of cancer survivorship. Specif- ically, we will present an overview of what is known about psychological late effects of childhood cancer, as well as some guidelines for managing these effects.

We use the phrase, “psychological late effects,” to refer to the inﬂuence of cancer, treatment and survivorship on survivors’ and their family members’

feelings, thoughts, behaviors and relationships. Like medical late effects, psychological late effects can occur a year or two after treatment, but they may not even begin to emerge until many years after treatment ends. The breadth of this deﬁnition implies that psychological late effects can appear in many aspects of a survivor’s life. Much research to date on psychological late effects has focused on the neurocognitive sequelae of treatment (see Chapter 4for an excellent review of this work). Here, we will focus on the broader array of areas in which psychological late effects have been examined: the development of psychological symptoms (e.g. depression, behavior disorders, posttraumatic stress), the abd functional im-

Psychological Aspects of Long-Term Survivorship

Mary T. Rourke · Anne E. Kazak

(2)

pact of cancer/quality of life and peer relationships/social skills. In addition, because childhood cancer is a powerful experience – not only for the di- agnosed child, but also for those closely involved with him or her – we will explore psychological late effects that survivors’ family members may experience.

19.1 Psychological Symptoms in Childhood Cancer Survivors

19.1.1 Depression and Behavioral Disorders Although many healthcare providers may believe that high rates of depression or behavioral disorders are common in cancer survivors, there is little evidence that this is the case. While parents tend to see higher than average levels of somatic symptoms in children (e.g. headaches, stomachaches, toileting issues [39, 43]), most research indicates no unusual levels of psychological symptoms in survivors during childhood and adolescence.Across a number of studies, overall rates of depression [42], behavioral disorders [41, 43] and other general psychological symptoms [9, 31, 55] reported by children and their parents have been comparable to rates reported by children who have never had cancer. Similarly, survivors appear to have no more social anxiety, loneliness or body image concerns than do their never-ill peers [46], and they may even have a more positive self-image than their peers [3, 35].

Similar results have been found with older survivors of childhood cancer. In general, young adult survivors’ rates of depressive symptoms are comparable to those of peers [34] or norms [52]. Although the large multi-site Childhood Cancer Survivors Study (CCSS) identiﬁed higher levels of depressive and somatic symptoms in survivors than in their siblings, survivors’ rates of depressive and somatic symptoms were still in the normal range [63]. Simi- larly, in a large study of Danish survivors, overall rates of depression and other psychiatric disorders in survivors of childhood cancers other than brain tumor were consistent with national norms. Only brain tumor survivors evidenced higher levels of depression and other presumably organic disorders (e.g. psychoses, schizophrenia), as well as a higher

rate of psychiatric hospitalization [52]. Aggression and antisocial behavior in young adult survivors occur at rates comparable to those in never-ill peers, while survivors’ use of illegal drugs may be less frequent than that of peers [61].

Although most survivors are not depressed and report that they are doing well overall, a signiﬁcant minority may experience some form of signiﬁcant psychological distress. One-quarter to one-third of young adult survivors report higher-than-average levels of global psychological distress [14, 31, 49], with a concerning percentage reporting that they have experienced suicidal thoughts [49]. It is important to note that these high levels of psychological distress are evident even in groups of survivors that also report good overall functioning, with high rates of employment and high scores on quality of life measures [54].

The relatively high rates of global distress, coupled with the lack of evidence for any one clear psychological diagnosis, has led recent researchers to specu- late that more traditional or general measures of psychopathology and well-being may not capture the speciﬁc experiences of childhood cancer survivors [22]. One alternative is to view cancer (and, potentially, aspects of the cancer survivorship period) as traumatic events, which may in turn lead to the experience of posttraumatic stress in the survivorship years [22, 53, 56].

19.1.2 Posttraumatic Stress

It is easy to see the ways in which childhood cancer can be traumatic. At diagnosis, parents are told explicitly that their child may die. Survivors may hear this information, or may interpret life threat from their parents’ urgency and intense emotional reactions, their own physical reactions to treatment and the abrupt changes in their family routine. Cancer treatment can be experienced as a horrifying, scary and painful series of events for everyone involved, ranging from events like losing hair to feeling nau- seous to experiencing repeated and painful invasive procedures. Patients and their families may watch other children, with whom they have developed relationships, die of the same disease they are ﬁghting.

(3)

Likewise, survivorship can offer its own set of traumatic events. Just when survivors are reaching a stage of development at which they are becoming more independent, they may be faced with signiﬁcant late effects – such as cardiovascular disease, infertility or cognitive disabilities – that limit or otherwise affect the life choices available to them. Further, it is not uncommon for survivors to know fellow survivors who have died of a recurrence or medical late effect.

Posttraumatic stress reactions to these distressing events can begin soon after the initial traumatic event and continue for many years. Three kinds of posttraumatic stress symptoms may emerge: persist- ent re-experiencing of the traumatic parts of cancer/

survivorship (including intrusive thoughts, night- mares or strong negative feelings triggered by reminders), actual or considered avoidance of cancer- or survivorship-related situations and strong physiological responses when reminded about cancer or survivorship [2, 29]. Survivors may experience only a few of these posttraumatic stress symptoms (PTSS), or they may develop several symptoms from all three categories. If this happens, and if the symptoms sig- niﬁcantly interfere with their normal activities, the diagnosis of posttraumatic stress disorder (PTSD) is warranted.

Research has, indeed, documented higher levels of both PTSS and PTSD in cancer survivors and their family members. Rates of PTSD for adolescent survivors are generally low and roughly comparable to rates in non-ill adolescents (ranging from 5–10%

[5, 11, 26]. Most adolescent survivors, however, do report at least some symptoms of PTSD [4, 11]. In one study, 50% of adolescent survivors reported re-experiencing symptoms, and 29% reported increased physiological responses when reminded of cancer/

survivorship [26].

Developmentally, PTSD and PTSS appear to be even more prominent for childhood cancer survivors during young adulthood, where 15–21% of young adult survivors report experiencing PTSD. In addition, more than 75% of young adult survivors report re-experiencing difﬁcult moments of treatment/survivorship, while nearly half report increased physiological reactions when reminded of cancer/survivorship and one-quarter attempt to or want to avoid

cancer-related discussions or situations [54]. Data indicate that for child and adolescent survivors, traumatic reactions are associated with concrete events, such as losing hair or experiencing painful procedures. For young adult survivors, these reactions to concrete events persist, but are accompanied by two kinds of additional distress: distress over the retro- spective realization of the life threat that they experienced and worry over medical late-effects that exist or may occur [26].

Although PTSS is often subclinical, symptoms can significantly impede development for survivors. For example, an adolescent who is very upset when reminded of her treatment experience may do every- thing she can to avoid talking or thinking about her cancer. She may not feel comfortable socializing with friends or dating, even though she would like to do these things. A child or adolescent might become so distracted by a high level of worry or vigilance about his health that his ability to focus at school suffers, resulting in lower or inconsistent grades. For young adult survivors, worries about infertility and other medical late-effects can interfere with intimate relationships and family planning, and concerns related to cognitive or physical limitations may prevent the establishment of independence. Because survivors may report no other significant areas of difficulty, it may be difficult to discern that they are experiencing posttraumatic stress.

As mentioned above, cancer and survivorship can be traumatic not only for the survivor, but also for family members, and data do indicate that parents and siblings also experience PTSS and PTSD.

Although rates of PTSD in mothers and fathers range across studies from 5–20% [26, 27, 36, 37], at least one-third of families of adolescent survivors have at least one member who has had cancer-related PTSD.

In addition, subclinical rates of PTSS in family members are common. Mothers and fathers of survivors report signiﬁcantly more PTSS than do parents of never-ill children [23, 27]. Nearly all families (99%) have at least one family member who struggles with re-experiencing symptoms, over 80% have at least one member with increased physiological reactions when reminded of cancer and nearly half have at least one member who avoids reminders of cancer [28].

(4)

Adolescent siblings, too, appear to have mild to moderate levels of PTSS in response to a brother or sister’s cancer [1]. Common sibling reactions include per- sistent worries about the survivor’s health and distress when reminded of the cancer experience. Like adolescent survivors, adolescent siblings may be functioning well overall, and the posttraumatic stress may not be apparent at ﬁrst glance.

The factors that predispose some survivors and family members to develop PTSD or PTSS are not completely clear. It makes sense to expect that survivors who endured more difﬁcult treatments, or whose diagnoses had worse prognoses, would be more likely to develop PTSD or some symptoms of posttraumatic stress. This does not seem to be the case, however. The more objective factors of treatment intensity, diagnosis and age at time of treatment do not appear to be related to posttraumatic stress for most survivors and their family members.

What is related are the beliefs of survivors about their treatment intensity and their current and past life threat [17, 24]. The one exception appears to involve medical late effects. There are some indications that for young adult survivors, medical team ratings of medical late-effect severity are related to higher levels of posttraumatic stress [54].

19.2 Quality of Life and Functional Impact of Cancer

A number of studies have looked at the more global construct of “quality of life” in order to assess psychological late-effects and overall functioning in the years after childhood cancer. These studies agree that adolescent and young adult survivors of childhood cancer report very good overall functioning in physical and general psychosocial domains [6, 8, 32, 62]. In some studies, quality of life scores are even better than norms for peers with other chronic illnesses or those who have never been ill [54]. Only two quality of life issues appear to emerge as consistent areas of difﬁculty for survivors: the experience of ongoing fatigue or aches and pains, and worry over medical late-effects or the possibility of a second cancer [6, 32, 62]. Mothers report more negative quality of life for

their adolescent survivors than survivors report themselves [8], suggesting the importance of asking both children and their mothers, independently, about quality-of-life issues. Brain tumor survivors report a lower physical quality of life than survivors of other cancers, while there is some evidence that ALL survivors, who report good physical quality of life, may have more psychosocial issues [8]. Overall, however, average levels of quality of life across studies indicate that survivors have a positive outlook, are satisﬁed with their lives, feel a sense of purpose and have the same opportunities in daily living as do their never-ill peers.

Studies documenting the impact of childhood cancer on educational and employment achieve- ments, as well as on the achievement of developmental milestones, are largely consistent with these generally high levels of quality of life. Overall, survivors tend to enter gifted programs, finish high school and earn bachelors degrees at rates comparable to those of their siblings [15, 33, 34]. Some survivors, however, appear to be at greater risk for difficulties in these areas. Those treated before the age of 6 who survived a brain tumor, or who received intrathecal metho- trexate and/or cranial radiation (especially at doses higher than 24Gy), are more at risk for learning disabilities and special education placements, and are less likely to finish high school and complete a bachelors degree [15, 33, 38, 40]. Receiving special education may increase survivors’ educational attainment levels to more closely parallel those of siblings [38].

Later differences in employment may also be evident in some survivors, despite overall high rates of employment in survivors generally. Survivors appear to be employed less frequently than their siblings [40], although more survivors than siblings report being students or homemakers [33]. As many as one- third of all survivors report problems obtaining health insurance [40], a potentially signiﬁcant prob- lem in this medically-vulnerable population. Rates of marriage are also generally high, although there is evidence that survivors marry at rates lower than those of their siblings or population norms. Those with CNS tumors appear to have lower marriage rates and, when they do marry, higher divorce rates [33, 48].

(5)

19.3 Effects on Social Development

Developing social relationships is a primary task of childhood and adolescence. It also provides children with the contextual experience necessary for building an understanding of who they are and developing a sense of competence. Because cancer and treatment at least partially remove children from the normal everyday activities in which most children build relationships, it seems likely that social development is an area at risk for difﬁculties.

19.3.1 Social Consequences

for Survivors of Non-CNS Malignancies

While childhood cancer survivors do show some social developmental differences, it is not clear that these differences represent deﬁcits. Overall, survivors of childhood cancer are rated as more socially isolated and they have fewer best friends than do other children [60]. Survivors participate in fewer than half as many normative peer activities (e.g. going to a friend’s house, going out with friends, playing sports) as their never-ill peers [46]. Children whose physical appearance and athletic ability were affected by their treatment may be at higher risk for some of these social challenges [50, 60].

For survivors of non-CNS malignancies, there seem to be few immediate consequences of these social differences. Despite being identiﬁed as more socially isolated and having fewer best friends, childhood cancer survivors are as well liked as their classmates. Teachers rate survivors as less aggressive than other children and, in some studies, as more sociable [13]. Furthermore, as mentioned above, survivors themselves generally do not report feeling lonely or depressed.

The potential for longer-term problems associated with social developmental differences exists, however, and has not yet been well researched. Being less involved with peers may not give survivors the social practice they will need as young adults. These kinds of difﬁculties are likely to emerge slowly over time, and they might not be evident until several years after treatment ends. Indeed, one study suggests that

in adulthood, childhood cancer survivors have more difﬁculty with close friendships and romantic relationships, reporting shorter intimate relationships and relationships characterized by a lack of conﬁding or personal involvement [34]. While there are no other empirical studies of this issue, the lower marriage rates cited by some studies (see above) are consistent with this possibility. More work in this area is necessary to better understand the long-term social implications for survivors.

19.3.2 Social Consequences for Survivors of CNS Malignancies

As reviewed above, CNS malignancies appear to present a specific vulnerability for psychological late effects, above and beyond the cognitive changes that are usually associated with CNS disease and treatment [50]. This vulnerability appears to be particularly associated with deficits in the area of social development. Several studies of children who were treated for brain tumors identify difficulties in social competence and communication with peers; they also cite reports of social isolation [12, 18, 47, 59]. In one study, classmates continued to see brain tumor survivors as “sick,” even many years after treatment had ended [59]. It is likely that compromises in social competence are related to the cognitive changes that many brain tumor survivors experience as a result of their disease and treatment. Cognitive impairments may impede a child’s ability to understand and respond appropriately to social cues. Indeed, in one study of brain tumor survivors, verbal memory and learning problems accounted for much of the social withdrawal seen in the children, while difficulties in verbal fluency and decreased IQ were significantly related to difficulties with attention, inhibition and social functioning [18]. Over time, these survivors are at higher risk psychologically. For example, in a large Danish study of long-term childhood cancer survivors, brain tumor survivors (but not survivors of non-CNS malignancies) were significantly more likely to experience psychiatric hospitalization and to demonstrate a higher risk of psychotic illness after physical illness [52].

(6)

19.3.3 Social Consequences for Survivors’ Family Members

There is very little research on the social consequences of childhood cancer for members of a survivor’s family. Some research suggests that parents may feel lonely or isolated after treatment ends [58].

During the survivorship period, parents may have continued concerns about their child’s health and fewer people available to hear and respond to those concerns. Medical teams are seen less frequently, while friends and family members – relieved by the victory of survival – may not understand a parent’s continued medical concerns. Being aware that these feelings can emerge, and ﬁnding new ways to talk to supportive people in their lives about the stage of cancer survivorship, can help parents feel more con- nected and less isolated. Increasingly, parents are also turning to books, on-line support groups, websites, list-serves and other media to reduce feelings of isolation (see [30] for a particularly good resource for parents and others close to long-term survivors).

19.4 Implications for the Provision of Follow-Up Care

Participation in regular follow-up care is strongly recommended for long-term survivors in order to provide prevention and/or early detection of medical late effects [16, 44, 51]. Because childhood cancer survivors are doing well overall and, as a group, demonstrate relatively low levels of psychological symptoms, it is easy to overlook the ways in which psychosocial issues can interfere in survivors’ medical care. However, even low-to-moderate levels of posttraumatic stress, like that evident in a majority of survivors and their parents, can have very signiﬁcant medical consequences. For example, avoidance of reminders of the traumatic illness experience – a common symptom of posttraumatic stress – puts survivors at risk for avoiding medical care, a potentially disastrous behavior in this medically-vulnerable population. The distress and arousal that accompany cancer reminders – also hallmark symptoms of posttraumatic stress – are likely to be high during

cancer follow-up visits and may impede the abilities of survivors to comprehend or attend to the cancer- related education and information being delivered.

Participating in follow-up care itself may affect distress. For example, survivors may become more upset and even be re-traumatized as they hear about medical complications associated with their treatment.

While there are no data that explicitly demonstrate a link between follow-up care and distress in childhood cancer survivors, long-term survivors and their family members report follow-up visits to be among some of the most frightening moments they experience [26].

Developmental issues may make participating in long-term follow-up care particularly important, and frightening, for young adult survivors. Childhood cancer survivors may not have had full access to information during their treatments, and, as a result, often learn of their long-term medical risks for the ﬁrst time during a follow-up visit [21]. Furthermore, as childhood cancer survivors reach adulthood, they take on the direct responsibility for managing their own healthcare – a complex task, formerly handled by parents, that can be overwhelming and frightening.

Thus, recent urgings for the development of wide- ly-available follow-up care have appropriately argued for the integration of medical and psychosocial evaluation throughout the lifespan of childhood cancer survivors [16, 44]. There is some evidence that survivors are receptive to psychosocial screening and interventions in the context of their follow-up care (e.g. [10, 49]) and that even brief educational interventions can be effective in changing survivors’

understanding of their medical vulnerability, as well as their perceptions about the importance of follow- up care [7]. There is a lack of clarity, however, in exactly what form speciﬁc interventions should take.

For example, although survivors may endorse their willingness to participate in interventions that target modiﬁcations of health-risk behaviors (e.g. [10]), it is often difﬁcult to demonstrate the effectiveness of these very-targeted interventions [19].

Increasingly, professionals are advocating that follow-up care explicitly attend to the broader array of psychosocial issues that can emerge during survivor-

(7)

ship [17, 20, 22, 44, 57]. Recommendations include in- stituting comprehensive, but brief, psychosocial screening into every follow-up visit for every patient [49]. Such assessments will best inform subsequent referrals and care if they include assessments of issues specific to the cancer experience (rather than assessments of global distress). Although healthcare providers may be able to accomplish some level of assessment through the use of standardized questionnaires, there are some indications that interviews may elicit more information than questionnaires about cancer-specific symptoms [54]. In the context of the medical exam, then, it is important for healthcare providers to ask specific questions about survivors’ achievement of appropriate developmental milestones (e.g. education, employment, relationships), emotional distress and, in particular, specific symptoms of posttraumatic stress (i.e. re-experiencing, avoidance and arousal; for examples of specific questions, see [53]). Knowing a survivor’s strengths, as well as the specific symptoms s/he experiences, enables healthcare providers to direct the survivor to the most appropriate and effective psychosocial care.

The process may not be easy, however, due to issues related to availability and access. For example, pediatric cancer programs may have difﬁculty identifying appropriate adult mental healthcare services, while survivors’ lack of insurance coverage can complicate access to such services even when they are identiﬁed.

While there are no easy answers, it is recommended that follow-up program personnel draw on social work or psychology expertise to identify the most appropriate referral sources or policies that may be available in their region.

It is also critical to develop ways of responsibly educating survivors on their medical risk while min- imizing the anxiety that such education may provoke [20]. Providers should be attuned to the potential psychological impact of the information they are de- livering, and they should be sensitive to the fact that many survivors may be hearing the information directly for the ﬁrst time or feel independently responsible for managing this health-related issue for the ﬁrst time. Being careful to ask about and listen to survivors’ perceptions, and then carefully correcting misperceptions, can minimize anxiety-provoking

misunderstandings that can impede participation in future medical care. Providing anticipatory guidance about psychosocial symptoms that are normative for many survivors (e.g. anxiety and worry about medical late effects or distress when reminded of cancer and late effects) can also minimize worry. Helping survivors recognize aspects of the situation that they control (e.g. participating in regular preventive care) and identifying their areas of strength in managing their own health may also decrease the chances that posttraumatic reactions could undermine their involvement in future medical care. For example, practitioners can help survivors identify modiﬁable risk factors and can emphasize their control over maintaining their health [20]. Finally, while it is recommended that all patients receive this standard level of psychosocial care integrated into each follow- up visit, some survivors will demonstrate speciﬁc, and possibly intensive, psychological needs. It is, therefore, important to maintain a referral list of care providers who can deliver more intensive care, including psychotherapists and neuropsychologists.

19.5 Research and Practice:

Developing Interventions Targeting Psychological Late Effects

A critical piece of providing comprehensive follow- up care involves interdisciplinary research that aims to develop and demonstrate the effectiveness of psychosocial interventions as part of the follow-up care.

Cancer centers across the country are now beginning to develop and test such interventions, spanning a broad range of psychosocial needs. Such interventions range from targeted behavioral efforts for mod- ifying health risk behaviors (e.g. [10, 20]), to more general programs that, during follow-up visits, aim to educate survivors on their medical vulnerability and the need for continued participation in follow-up care (e.g. [7]).

As an example, building on the research related to PTSS across members of the family, an intervention for adolescent survivors and their families has been developed and tested in a randomized clinical trial of 150 families. The intervention, Surviving Cancer

(8)

Competently Intervention Program (SCCIP [25]) in- tegrates cognitive behavioral approaches to distressing symptoms of posttraumatic stress within a family systems intervention model. SCCIP has been shown to reduce PTSS in survivors and in their fathers [28].

19.6 Conclusion

Overall, survivors of childhood cancer report doing very well and demonstrate low rates of traditional psychological issues. Though most do well, a signiﬁ- cant minority may experience PTSD, and most survivors and their family members experience at least some symptoms of posttraumatic stress related to cancer, treatment or survivorship experiences. The large majority of these reactions – although they can pose signiﬁcant impediments to individual and family development – are normal reactions to the unusual stress of childhood cancer that are likely to emerge unpredictably and to wax and wane over the course of time. Social and relationship differences may also affect childhood cancer survivors, though it is unclear whether these differences contribute to ongoing distress. It is essential during any comprehensive follow-up care program that there be a sensitive assessment of these issues and that the development of interventions to combat psychological late effects be part of ongoing efforts.

Finally, it is important to emphasize that the experience of psychological late effects does not rule out the possibility that survivors may have positive experiences or outcomes that they ascribe to the childhood cancer experience. There is little formal research on this topic, but many psychologists working with survivors have qualitative or anecdotal reports that parents and survivors grow to appreciate at least some parts of the cancer experience. Parents and survivors frequently explain that childhood cancer taught them to put things in perspective in ways that other people do not do, that they are not as material- istic and that they are more empathic. Survivors frequently feel that they are more mature than others their age, and that they value their family relationships more. Family members and survivors may feel grateful to the medical professionals who worked

with them, and proud of their ability to manage – and survive – challenges like childhood cancer and survivorship [26]. Drawing on these strengths and the positive contributions of the cancer experience can help survivors and their family members weather future challenges they may face.

References

1. Alderfer M, Labay L, Kazak A (2003) Brief report: does posttraumatic stress apply to siblings of childhood cancer survivors? J Pediatr Psychol 28:281–286

2. American Psychiatric Association (1994) Diagnostic and statistical manual of the American Psychiatric Association, 4th edn. American Psychiatric Press, Washington DC 3. Anholt UV, Fritz GK, Keener M (1993) Self-concept in

survivors of childhood and adolescent cancer. J Psychosoc Oncol 11:1–16

4. Brown R, Madan-Swain A, Lambert R (2003) Posttraumat- ic stress symptoms in adolescent survivors of childhood cancer and their mothers. J Traum Stress 16:309–318 5. Butler R, Rizzi L, Handwerger B (1996) Brief report: the as-

sessment of posttraumatic stress disorder in pediatric cancer patients and survivors. J Pediatr Psychol 21:499–504 6. Crom DB, Chathaway DK, Tolley EA, Mulhern RA, Hudson

MM (1999) Health status and health-related quality of life in long-term adult survivors of pediatric solid tumors. Int J Cancer 12:25–31

7. Eiser C, Hill JJ, Blacklay A (2000) Surviving cancer: what does it mean for you? An evaluation of a clinic-based intervention for survivors of childhood cancer. Psycho Onco 9:214–220

8. Eiser C, Vance YH, Glaser A, Galvin H (2003) The value of the PedsQTLM in assessing quality of life in survivors of childhood cancer. Child Care Health Dev 29:95–102 9. Elkin TD, Phipps S, Mulhern RK, Fairclough D (1997) Psy-

chological functioning of adolescent and young adult survivors of pediatric malignancy. Med Pediatr Oncol 29:

582–588

10. Emmons KM, Butterﬁed RM, Puleo E, Park ER, Mertens A, Gritz ER, Lahti M, Li FP (2003) Smoking among partici- pants in the Childhood Cancer Survivors cohort: the Part- nership for Health Study. J Clin Oncol 21:189–196

11. Erickson S, Steiner H (2001) Trauma and personality correlates in long term pediatric cancer survivors. Child Psychiatr Hum Dev 31:195–213

12. Fuemmeler BF, Elkin TD, Mullins LL (2001) Survivors of childhood brain tumors: behavioral, emotional, and social adjustment. Clin Psychol Rev 22:547–585

13. Gartstein MA, Noll RB, Vannatta K (2000) Childhood aggression and chronic illness: Possible protective mecha- nisms. J Appl Dev Psychol 21:315–333

(9)

14. Glover DA, Byrne J, Mills JL, Robison LL, Nicholson HS, Meadows A, Zeltzer LK (2003) Impact of CNS treatment on mood in adult survivors of childhood leukemia: a report from the Children’s Cancer Group. J Clin Oncol 21:4395–

4401

15. Haupt R, Fears TR, Robison LL, Mills JL, Nicholson S, Zeltzer LK, Meadows AT, Byrne J (1994) Educational attainment in long-term survivors of childhood Acute Lym- phoblastic Leukemia. JAMA 272:1427–1432

16. Hobbie W, Ogle S (2001) Transitional care for young adult survivors of childhood cancer. Semin Oncol Nursing 17:268–273

17. Hobbie W, Stuber M, Meeske K, Wissler K, Rourke M, Ruccione K, Hinkle A, Kazak A (2000) Symptoms of posttraumatic stress in young adult survivors of childhood cancer. J Clin Oncol 18:4060–4066

18. Holmquist LA, Scott J (2002) Treatment, age, and time-related predictors of behavioral outcome in pediatric brain tumor survivors. J Clin Psychol Med Sett 9:315–321 19. Hudson MM, Tyc VL, Srivastava DK, Gattuso J, Quargnenti

A, Crom DB, Hinds P (2002) Multi-component behavioral intervention to promote health protective behaviors in childhood cancer survivors: the protect study. Med Pediatr Oncol 39:2–11

20. Hudson MM, Mertens AC, Yasui Y, Hobbie W, Chen H, Gurney JG, Yeazel M, Recklitis CJ, Marina N, Robison LR, Oefﬁnger KC (2003) Health status of adult long-term survivors of childhood cancer: a report from the Childhood Cancer Survivor Study. JAMA 290:1583–1592

21. Kadan-Lottick NS, Robison L, Gurney JG, Neglia JP,Yasui Y, Hayashi R, Hudson M, Greenberg M, Mertens A (2002) Childhood cancer survivors’ knowledge about their past diagnosis and treatment: Childhood Cancer Survivor Study. JAMA 287:1832–1839

22. Kazak A Evidence-based interventions for survivors of childhood cancer. J Pediatr Psychol (in press)

23. Kazak A, Barakat L, Meeske K, Christakis D, Meadows A, Casey R, Penati B, Stuber M (1997) Posttraumatic stress, family functioning, and social support in survivors of childhood leukemia and their mothers and fathers.

J Consult Clin Psychol 65:120–129

24. Kazak A, Stuber M, Barakat L, Meeske K, Guthrie D, Mead- ows A (1998) Predicting posttraumatic stress symptoms in mothers and fathers of survivors of childhood cancer.

J Am Acad Child Adoles Psychiatry 37:823–831

25. Kazak A, Simms S, Barakat L, Hobbie W, Foley B, Golomb V, Best M (1999) Surviving Cancer Competently Intervention Program (SCCIP): a cognitive-behavioral and family ther- apy intervention for adolescent survivors of childhood cancer and their families. Family Proc 38:175–191

26. Kazak A, Barakat L, Alderfer M, Rourke M, Meeske K, Gallagher P Cnaan A, Stuber M (2001) Posttraumatic stress in survivors of childhood cancer and their mothers: development and validation of the Impact of Traumatic Stres- sors Interview Schedule (ITSS). J Clin Psychol Med Sett 8:307–323

27. Kazak A, Alderfer M, Rourke M, Simms S, Streisand R, Grossman J Posttraumatic stress symptoms (PTSS) and Posttraumatic stress disorder (PTSD) in families of adolescent cancer survivors. J Pediatr Psychol (in press) 28. Kazak A, Alderfer M, Streisand R, Simms S, Rourke M,

Barakat L, Gallagher P. A Treatment of posttraumatic stress symptoms in adolescent survivors of childhood cancer and their families: a randomized clinical trial (submitted) 29. Kazak AE, Kassam-Adams N, Alderfer M, Rourke MT,

Schneider S, Zelikovsky N A model for understanding pediatric medical traumatic stress (in preparation) 30. Keene N, Hobbie W, Ruccione K (2000) Childhood cancer

survivors: a practical guide to your future. O’Reilly, Cam- bridge

31. Kupst MJ, Natta M, Richardson C, Schulman J, Lavigne J, Das L (1995) Family coping with pediatric leukemia: Ten years after treatment. J Pediatr Psychol 20:601–617 32. Langeveld NE, Stam H, Grootenhuis MA, Last BF (2002)

Quality of life in young adult survivors of childhood cancer. Supp Care Cancer 10:579–600

33. Langeveld NE, Ubbink MC, Last BF, Grootenhuis MA,Voute PA, DeHaan RJ (2003) Educational achievement, employment and living situation in long-term young adult survivors of childhood cancer in the Netherlands. Psycho Oncol 12:213–225

34. Mackie E, Hill J, Kondryn H, McNally R (2000) Adult psychosocial outcomes in long-term survivors of acute lym- phoblastic leukaemia and Wilms’ tumour: a controlled study. Lancet 355:1310–1314

35. Maggiolini A, Grassi R,Adamoli L, Corbetta A, Charmet GP, Provantini K, Fraschini D, Jankovic M, Lia R, Spinetta J, Masera G (2000) Self-image of adolescent survivors of long-term childhood leukemia. J Pediatr Hematol Oncol 22:417–421

36. Manne S, DuHamel K, Gallelli K, Sorgen K, Redd W (1998) Posttraumatic stress disorder among mothers of pediatric cancer survivors: diagnosis, comorbidity, and utility of the PTSD Checklists as a screening instrument. J Pediatr Psychol 23:357–366

37. Manne S, DuHamel K, Nereo N, Ostroff J, Parsons S, Marti- ni R, Williams S, Mee L, Sexson S, Wu L, Difede J, Redd W (2002) Predictors of PTSD in mothers of children undergo- ing bone marrow transplantation: the role of cognitive and social processes. J Pediatr Psychol 27:607–617

38. Mitby PA, Robison LL, Whitton JA, Zevon MA, Gibbs IC, Tersak JM, Meadows AT, Stovall M, Zeltzer LK, Mertens AC (2003) Utilization of special education services and educational attainment among long-term survivors of childhood cancer. Cancer 97:1115–1126

39. Mulhern R, Wasserman AL, Friedman AG, Fairclough D (1989) Social, competence and behavioral adjustment of children who are long-term survivors of cancer. Pediatrics 83:18–25

(10)

40. Nagarajan R, Neglia JP, Clohisy DR, Yasui Y, Greenberg M, Hudson M, Zevon MA, Tersak JM, Ablin A, Robison LL (2003) Education, employment, insurance, and marital status among 694 survivors of pediatric lower extremity bone tumors: a report of the Childhood Cancer Survivor Study.

Cancer 97:2554–2564

41. Newby WL, Brown RT, Pawletko TM, Gold SH, Whitt JK (2000) Social skills and psychological adjustment of child and adolescent cancer survivors. Psycho Oncol 9:113–126 42. Noll R, Bukowski W, Davies W, Koontz K, Kularkrni R (1993)

Adjustment in the peer system of children with cancer: a two-year follow-up study. J Pediatr Psychol 18:351–364 43. Noll RB, MacLean WE, Whitt JK, Kaleita TA, Stehbens JA,

Waskerwitz MJ, Ruymann FB, Hammond GD (1997) Behav- ioral adjustment and social functioning of long-term survivors of childhood leukemia: parent and teacher reports.

J Pediatr Psychol 22:827–841

44. Oefﬁnger KC (2003) Longitudinal risk-based health care for adult survivors of childhood cancer. Curr Prob Cancer 27:143–167

45. Patenaude AF, Last B (2001) Editorial. Cancer and children:

Where are we coming from? Where are we going? Psycho Oncol 10:281–283

46. Pendley JS, Dahlquist LM, Dreyer Z (1997) Body image and psychosocial adjustment in adolescent cancer survivors.

47. Radcliffe J, Bennett D, Kazak AE, Foley B, Phillips PC (1996) Adjustment in childhood brain tumor survival: child, mother, and teacher report. J Pediatr Psychol 21:529–539 48. Rauck AM, Green DM, Yasui Y, Mertens A, Robison LL

(1999) Marriage in the survivors of childhood cancer: a preliminary description from the Childhood Cancer Sur- vivor Study. Med Pediatr Oncol 33:60–63

49. Recklitis C, O’Leary T, Diller L (2003) Utility of routine psychological screening in the childhood cancer survivor clinic. J Clin Oncol 21:787–792

50. Reiter-Purtill J, Noll R (2003) Peer relationships of children with chronic illness. In: Roberts M (ed) Handbook of pediatric psychology, 3rd edn. Guilford, New York

51. Richardson RC, Nelson MB, Meeske K (1999) Young adult survivors of childhood cancer: attending to emerging medical and psychosocial needs. J Pediatr Oncol Nurs 16:

136–144

52. Ross L, Johansen C, Dalton S O, Mellemkjaer L, Thornassen LH, Mortensen PB, Olsen JH (2003) Psychiatric hospitaliza- tions among survivors of cancer in childhood or adolescence. N Engl J Med 349:650–657

53. Rourke M, Stuber M, Hobbie W, Kazak A (1999) Posttrau- matic stress disorder: Understanding the psychosocial impact of surviving childhood cancer into young adulthood.

J Pediatr Oncol Nurs 16:126–135

54. Rourke M, Hobbie W, Kazak A (2002) Posttraumatic stress in young adult survivors of childhood cancer. 7th interna- tional conference on long-term complications of treatment of children and adolescents for cancer, Niagara on the Lake, Ontario, Canada

55. Sawyer M, Antoniou G, Toogood I, Rice M, Baghurst P (2000) Childhood cancer: a 4-year prospective study of the psychological adjustment of children and parents. J Pediatr Hematol Oncol 22:214–220

56. Stuber M, Kazak A, Meeske K, Barakat L (1998) Is posttraumatic stress a viable model for understanding responses to childhood cancer? Psychiatr Clin North Am 7:169–182 57. Van Dongen-Melman JE (2000) Developing psychosocial

aftercare for children surviving cancer and their families.

Acta Oncol 39:23–31

58. Van Dongen-Melman JE, Pruyn JFA, DeGroot A, Koot HM, Hahlen K, Verhulst FC (1995) Late psychosocial consequences for parents of children who survived cancer.

59. Vannatta K, Gartstein MA, Short A, Noll RB (1998) A controlled study of peer relations of children surviving brain tumors: teacher, peer, and self ratings. J Pediatr Psychol 23:279–287

60. Vannatta K, Zeller M, Noll RB, Koontz K (1998) Social functioning of children surviving bone marrow transplantation. J Pediatr Psychol 23:169–178

61. Verrill JR, Schafer J,Vannatta K, Noll RB (2000) Aggression, antisocial behavior, and substance abuse in survivors of pediatric cancer: possible protective effects of cancer and its treatment. J Pediatr Psychol 25:493–502

62. Zebrack BJ, Chesler M (2001) Health-related worries, self- image, and life outlooks of long-term survivors of childhood cancer. Health Soc Work 26:245–256

63. Zebrack BJ, Zeltzer LK, Whitton J Mertens AC, Odom L, Berkow R, Robison LL (2002) Psychological outcomes in long-term survivors of childhood leukemia, Hodgkin’s disease, and non-Hodgkin’s lymphoma: a report from the Childhood Cancer Survivor Study. Pediatrics 110:42–52