Adverse Health Outcomes and Health Concerns Among Survivors of Various Childhood Cancers: Perspectives From Mothers

Purpose: (1) Estimate incidence of adverse health events, (2) Examine differences in adverse health events among childhood cancer survivors, and (3) Understand the concerns of mothers after their child has completed cancer treatment.

Methods: A descriptive, mixed methods survey was used.

Results: Data were collected by a well-trained research assistant between September 2011 and February 2013 at two medical hospitals in Taiwan. Four instruments were used in this study.  A total of 201 potential participants were recruited from pediatric hematology and oncology clinics. Inclusion criteria were a willingness of the cancer survivors’ mothers to participate, and an ability to communicate in Mandarin or Taiwanese.  A total of mothers with mean age 43.6 years and their children who were childhood cancer survivors (age 7–24 years) were recruited. Of the survivors, 12.4% experienced five or more adverse health events and 95% of them were at school. The incidence of adverse health events of altered body image, fatigue and neurocognitive problems were 31.54, 14.77 and 12.53%, respectively. Among survivors, significant differences in adverse health events of pain, endocrine problems and altered body image issues were identified. Survivors receiving radiotherapy, bone marrow transplants or completing treatment after 6–10 years experienced significantly more adverse health events.  Pain (H [5] = 11.98, p = 0.04), endocrine issues (H [5] = 11.76, p = 0.04), and altered body image (H [5] = 14.34, p = 0.01) significantly differed among varied treatment protocols. Relapse(32.71%), nutrition(26.33%) and self-care (10.90%) were the greatest concerns for mothers. Childhood brain tumor survivors were identified as experiencing more adverse health events than other survivors.

Conclusion: The individual follow-up plans for childhood cancer survivors should incorporate the guidelines and protocols previously described for adverse health events associated with different cancer types. Survivors also need to be educated regarding risk factors for late and chronic treatment effects and diseases, with the goal of minimizing long-term damage. The need for healthcare teams to consider mothers’ health concerns was highlighted.