Psychosocial outcomes and reported service needs of long-term survivors of childhood cancer

Brad Zebrack and Mark A. Chesler

University of Michigan, Ann Arbor, MI 48109 USA

 

Childhood cancer increasingly is a treatable and even curable disease. While childhood cancers are still chronic and life-threatening diseases, they now have substantial chances for long-term cure. Now large numbers of long-term survivors of childhood cancer are entering adulthood, with full involvement in workplaces, careers and generative family lives. Whereas survivorship was once a medical miracle, it is now increasingly commonplace, and this success has changed both the medical and psychosocial meanings of cancer survivorship for young people and their families. Moreover, as the likelihood and period of survival increases, the long-term physical and psychosocial consequences of childhood cancer and its treatment become increasingly important to address.

 

Recent descriptive studies or commentaries about childhood cancer survivors (Chesler, 1990; Koocher, 1984b; Lansky et al., 1986; Meadows et al., 1993; Ruccione, 1991; van Dongen-Melman et al., 1996a; Zeltzer, 1993) delineate issues still faced by these young people, including worries about physical health status, psychological esteem and identity, welfare of one's immediate family, relating with the social world and being "different", re-integrating with the school system, possibilities for the future (including access to life and health insurance, job and career options, and understanding genetic compromises stemming from treatment), and continued care from a skilled and attentive medical system. A few studies have suggested that younger age at diagnosis, greater elapsed time since diagnosis, and higher socio-economic status are predictors of better psychosocial adjustment (Koocher & O'Malley, 1981; Koocher, 1984a); and van Dongen-Melman and her colleagues suggest that girls also show better adjustment than do boys (1996a).

 

However, the literature regarding the psychosocial effects of childhood cancer for long-term survivors is fraught with contradictions. For example, whereas one study relying on psychometric measures of psychological adjustment reported that 33% of survivors exhibited clinical evidence of at least a moderate degree of emotional difficulty (Chang et al., 1987; see also Sloper et al., 1994; van Dongen-Melman & Sanders-Woudstra, 1986; van Dongen-Melman et al., 1996a; Zeltzer, 1993), another study utilizing psychometric measures confirmed survivors to be psychologically well-adjusted overall (Gray et al., 1992; see also Arnholt et al., 1993; Fritz et al., 1988; Kazak, 1994; Noll et al., 1993). Indeed, in a comprehensive review of the literature, Kazak (1994) concludes that most LTS function well psychologically and do not have significant problems (see also Li, 1977; Holmes & Holmes, 1979), and that some even have quite positive psychological outcomes -- a testament to their coping abilities and emotional resiliency.

 

In general, the psychosocial literature on survivors of pediatric cancer suggests that cancer universally alters the way survivors view themselves and that these alterations can be positive or negative, and both positive and negative (Smith et al., 1991). Adolescents, in particular, have reported a sense of relief upon completion of therapy but also ambivalence related to perceived loss of social ties (i.e., with other adolescents with cancer, with health care providers who have come to know them, with the health care system), and fears of life without the protective "crutch" of effective treatment (Christ & Adams, 1984; Weeks & Kagan, 1994). The literature also reflects a general theme wherein survivors report that they feel different from others their own age, in some ways that are negative and in some ways that are positive. For instance, balancing a sense of loss in some physical capacities and interpersonal relationships is an oft-noted feeling of psychological growth and the experience of a "maturing influence of the cancer experience" (Chesler et al., 1992; Moore et al., 1987). Related empirical and epidemiological evidence in the last 30 years indicates that a variety of psychosocial factors that can be manipulated may be associated with positive health outcomes and positive adjustment during and after treatment for long-term survivors of childhood cancer, including: adequate information (Moore et al., 1987), social support (Broadhead et al., 1983; Chesler & Barbarin, 1984; Morrow et al., 1984; Tebbi et al., 1982), open family communication (Barbarin et al., 1985; Chesler & Barbarin, 1987; Spinetta, 1984), empowerment (Price, 1988), coping style (Barbarin, 1987; Baum & Baum, 1989), and regular medical follow-ups and checkups.

 

We argue that neither the pessimistic nor the optimistic findings and conclusions in the literature about the psychosocial status and experience of long-term survivors are adequate by themselves. These very disparate findings are products of different scholars' divergent ideologies or theories, research methods, and research foci -- and sometimes their sampling procedures. The story of these young people's lives and adaptations cannot be captured by the simple statement that they experience "higher levels of psychological distress" than a "physically normal" population, or even than their siblings. Moreover, the story is not as simple as saying that this population of survivors is "just the same psychologically" as everyone else, or even that they are "psychologically more healthy or sophisticated" than young people without a cancer history. The reality of this phenomenon is more complex, and in all likelihood, several stories are grossly true: (1) in comparison to others, some long-term survivors probably are more psychologically distressed when assessed by standardized instruments, and a small number are distressed enough to require professional care; (2) on similar instruments, and when asked for details about themselves and their lives, some long-term survivors report being no different from their peers; and (3) especially in intensive interview studies, many survivors report personal growth, maturity and even indicate experiencing richer and deeper psychological meaning and direction in their lives as a result of their cancer experience. In fact, depending upon the particular aspect of their lives and experiences being queried, any individual survivor may fit within all three groups.

 

In contrast to much of the early and prevailing literature predicting widespread incidence of severe psychological problems, the findings of our work suggest that LTS of childhood cancer, in contrast to a comparison sample: (1) feel they are more often "different from their peers", (2) are more mature psychologically, (3) understood more about what is important to them in life in existential or spiritual terms, and (4) are less afraid of death and minor illnesses. The findings also indicate that long-term survivors experience a series of special problems (such as discrimination in employment, education and insurance availability), worries (such as fear of recurrence, concerns about fertility, about their children getting cancer, and about their parents' health and finances), as well as a series of resultant service needs.

 

Table 1 contrasts responses with regard to a series of these "worries" for LTS from two different studies (University of Chicago in 1994 and University of Michigan in 1996) and a comparison group of young people without a cancer history. Substantially lesser percentages of the LTS population reported worrying "a lot" or "some" about "dying", "how my body looks", "keeping up in school" and "getting tired" than did the comparison group. But when it came to worries about cancer-specific issues, such as those in section B of this table, substantially more LTS reported worrying about these issues than did the comparison group. The stability in frequency of responses for the two survivor groups taken at two different times from two different geographic locations in the United States is notable.

 

Table 1: Future health concerns/worries (percent reporting "some" or "a lot").

Worries

UCMC*

LTS  n=254

UMMCH**

LTS  n=303

Comparison

group n=314

A. General Health Worries

I worry about dying

25

26

38

I worry about getting a cold or flu

17

16

21

I worry about how my body looks

50

55

73

I worry about fitting in with my old friends

26

25

35

I worry about keeping up in school

52

52

66

I worry about getting tired

22

26

36

B. Cancer-Specific Worries

I worry about getting (another) cancer

47

45

39

I worry about whether I can have children

50

45

32

I worry about whether my children will get cancer

44

45

21

    * University of Chicago, 1994

    ** University of Michigan, 1996

 

For the members of the University of Michigan population and the comparison group that indicated they felt they were different from others their age, Table 2 presents a coded tabulation of their open-ended responses describing the ways in which they felt they were different. Not only did LTS often cite their differences as "clearer existential sense" and "physically less healthy," these are the two areas where they in fact did differ most from the reports of young people without a cancer history.

 

Table 2: How I am Different From Others My Age (percent of LTS reporting).

 

Differences

UMMCH**

LTS  n=303

Comparison

Group  n=314

Physically healthier

More mature

Better social relations

Clearer existential sense

Not different/No answer

Physically less healthy

Less mature

Poorer social relations

3

23

4

17

36

10

4

3

2

22

3

3

58

4

6

2

    * University of Chicago, 1994

    ** University of Michigan, 1996

 

Table 3 presents some results about the service needs reported by the two long-term survivor populations. The clear evidence of specific needs for information -- both medical and lifestyle -- and for psychosocial support is compelling.

 

Table 3: Service I Would Like to Use (percent of LTS reporting)

Services

UCMC*

LTS  n=254

UMMCH**

LTS  n=303

1. Information about illness and treatment

37

44

          Information about diet and nutrition

35

43

2. Information about family planning

28

18

          Information about genetics

29

x

3. Counseling to help me cope

20

15

          Counseling to deal with worries

28

21

4. Assistance with career planning

49

58

          Assistance with school decisions

30

29

5. Information about health insurance

43

41

          Help with job problems

22

x

          Legal advice

22

17

6. Meet other young cancer survivors

41

43

    * University of Chicago, 1994

    ** University of Michigan, 1996

    x   not available

 

A note about research methods and foci

Major distinctions and debates have arisen about the methods used to study long-term survivors' quality of life, life experiences and psychosocial status and outlooks (Spinetta, 1982). Some of the research uses very small sample studies (n=30-50) of psychosocial issues (e.g., Fritz et al., 1988; and see Eiser & Havermans, 1994), and others are large studies commissioned and performed by medical staffs using medical and psychometric data (Zeltzer et al., 1995). Different assessment approaches include the use of psychometric instruments standardized on a "physically normal" population (e.g., Carpenter, 1991; van Dongen-Melman et al., 1996b; Zeltzer, 1993) and unique instruments designed explicitly for the survivor population (e.g., Feeney et al., 1992; Goodwin et al., 1994). In addition, most studies gather data via responses to highly structured instruments and questions that only minimally attend to the actual psychosocial experiences and feelings of young survivors, while others utilize both closed and open-ended questions or face-to-face and group interviews that permit/encourage survivors to express their experiences in their own words. More useful and comprehensive research approaches will have to deal directly with some if not all of these methodological debates and distinctions.