Positive and negative consequences of childhood cancer influencing the lives of young adults

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Abstract

The aim of the study was to describe how young adults who have survived childhood cancer consider their present life to be influenced by the cancer experience. A cohort of 246 long-term survivors were approached a median of 16 years after diagnosis. Semi-structured telephone interviews were conducted based on the Swedish version of the Schedule for the Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW). Interviews were analysed using content analyses. When asked if cancer negatively or positively currently affected their lives, 68% reported at least one negative consequence and 53% at least one positive consequence. The most frequently reported negative consequences include a variety of physical impairments and limitations in participating in activities; positive consequences describe a more positive view of life and of self. Women more often than men reported negative psychological impact, a changed body appearance and positive interaction with others. CNS tumours and combined treatment were somewhat associated to a higher extent of negative consequences. Overall, the results indicate that long-term survivors of childhood cancer are getting along quite well despite shortcomings.

Introduction

As a result of advances in the treatment of childhood cancer, the majority of those diagnosed with cancer in childhood now survive, and more attention has turned to the quality of that survival. In Sweden, currently one in every 700 adults between the ages of 25 and 35 has lived through the experience of childhood cancer. Among long-term survivors, defined as living five years or more beyond cancer diagnosis (Aziz and Rowland, 2003), chronic adverse health effects of the disease and treatment are common (Hudson et al., 2003, Robison et al., 2005, Geenen et al., 2007). A recent study of more than 10 000 adult survivors of childhood cancer up to thirty years after diagnosis, reported that 62% have at least one chronic health condition with 25% reporting conditions considered to be severe or life-threatening (Oeffinger et al., 2006). The prevalence of chronic conditions was based on data collected from a self-reported pre-defined list covering more than 130 possible medical conditions. A cumulative incidence was seen over time which was still increasing 25 years after diagnosis.

The findings regarding long-term psychological impact of childhood cancer vary. Some results show that long-term adult survivors report the same or even better quality of life (Langeveld et al., 2004, Pemberger et al., 2005, Zeltzer et al., 2008) and psychological functioning than controls (Elkin et al., 1997, Langeveld et al., 2002). However it has also been highlighted that long-term survivors worry about their fertility and the health of their children, vocational issues and their eligibility to obtain life-insurance (Weigers et al., 1998, Langeveld et al., 2002, Langeveld et al., 2004). In addition, uncertainty about the future and fears of cancer recurrence is expressed (Zebrack and Chesler, 2002, Langeveld et al., 2004). Symptoms such as avoidant behaviours, intrusive thoughts and heightened arousability have been reported in a number of childhood cancer survivors and discussed in the context of post-traumatic-stress disorder (PTSD) and post-traumatic-stress symptoms (Bruce, 2006, Rourke et al., 2007).

Among long-term survivors, females have been found to report poorer quality of life (Langeveld et al., 2004) and diminished health status (Hudson et al., 2003, Oeffinger et al., 2006, Geenen et al., 2007) compared to males. Long-term survival after a diagnosis with tumours in the central nervous system (CNS) or bone tumours has been associated with more impact on health status (Hudson et al., 2003, Oeffinger et al., 2006, Geenen et al., 2007) and limitations in performing physical activities (Ness et al., 2005). Regarding treatment, those who receive more intensive treatment including radiation to the head, chest, abdominal and pelvic areas, have been found to be at greater risk of adversely affected health (Hudson et al., 2003, Oeffinger et al., 2006, Geenen et al., 2007).

Most research concerning the lives of long-term survivors of childhood cancer has been conducted with standardized questionnaires. However by using questionnaires there may be a risk of not capturing the aspects considered most relevant by the individual as well as focusing on negative aspects in life due to the cancer experience. An alternative approach would be to also investigate any positive aspects that may have resulted from the cancer experience. In a few studies, in which patients were directly asked to report possible positive aspects following the cancer experience, results indicate that positive psychosocial outcomes in addition to negative consequences are common (Parry and Chesler, 2005, Mattsson et al., 2007).

It can be concluded that ongoing physical health problems are a reality for many adult long-term survivors of childhood cancer. However, there is less knowledge about how these deficiencies are perceived in daily life. The aim of the present study was to describe the positive and negative consequences of childhood cancer that young adult long-term survivors consider influences their present life, and to relate these consequences to diagnosis, treatment and gender.

Section snippets

Methods

The present cohort study has an explorative and descriptive design.

Results

Two hundred and forty-six young adult long-term survivors with a median age of 24 years and a median time from diagnosis of 16 years were interviewed. Participants differed from non-participants in one aspect: a higher proportion of males than females chose not to participate in the study. Clinical characteristics of participants and non-participants are shown in Table 1.

Discussion

The results show that for the majority of young adult survivors of childhood cancer, life is still influenced by the cancer experience a median of 16 years after diagnosis.

Although a considerable number of the long-term survivors reported negative consequences, as many as half reported positive consequences due to the cancer experience. The most frequently reported negative consequences include a variety of physical impairments and limitations in participating in activities. The most frequently

Conflict of interest statement

The authors indicate no potential conflicts of interest.

Acknowledgments

We want to thank all patients who so generously participated in this study. We also want to acknowledge Göran Gustafsson, Associate Professor and Eva Franzén, Department of Pediatric Hematology and Oncology, Karolinska University Hospital for assistance with the collection of clinical and medical data. This study was generously supported by The Swedish Children's Cancer Foundation, and by The Faculty of Medicine and Pharmacy at Uppsala University.

References (31)

  • A. Hjern et al.

    Disability in adult survivors of childhood cancer: a Swedish national cohort study

    Journal of Clinical Oncology

    (2007)
  • M.M. Hudson et al.

    Health status of adult long-term survivors of childhood cancer: a report from the childhood cancer survivor study

    JAMA

    (2003)
  • N.E. Langeveld et al.

    Quality of life, self-esteem and worries in young adult survivors of childhood cancer

    Psycho-oncology

    (2004)
  • N.E. Langeveld et al.

    Quality of life in young adult survivors of childhood cancer

    Support Care Cancer

    (2002)
  • I. Larcombe et al.

    Lifestyle behaviours of young adult survivors of childhood cancer

    British Journal of Cancer

    (2002)
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