Health-Related Quality of Life of Young Adult Survivors of Childhood Cancer: A Review of Qualitative Studies

Abstract

Purpose: The occurrence of late effects, combined with traditional growth and developmental issues, can significantly affect the health-related quality of life (HRQOL) of young adult survivors of childhood cancer (YASCC). Limited HRQOL measurement tools have been developed or validated for YASCC. The purpose of this study was to identify the domains of HRQOL that are unique to YASCC by conducting a systematic review of qualitative studies. Specifically, we compared the findings to the classical framework of HRQOL that was developed for survivors of adult-onset cancer and identified specific domains not being assessed in existing HRQOL instruments for YASCC. Methods: We searched qualitative studies published in peer-reviewed journals from 2000 to 2010 in the PsychINFO, PubMed, and EBSCOhost databases. A set of keywords and inclusion/ exclusion criteria were utilized to identify eligible studies with a focus on survivorship and HRQOL issues of YASCC. Results: Sixteen studies met the inclusion/exclusion criteria and were investigated in this study. Six important domains of HRQOL were identified (physical, social, psychological, spiritual, fertility/sexual, resilience, and body appearance) with several sub-domains. Conclusion: Use of the classical HRQOL framework and existing instruments is not comprehensive enough for YASCC. Adding unique domains to the classical framework and existing instruments will make them valuable tools for measuring the HRQOL of YASCC and increase health professionals' ability to identify if and when psychosocial services are needed for this unique population.

Assessing the psychosocial needs and program preferences of adolescents and young adults with cancer

“…Changes in appearance, ability to participate in regular school activities and athletics, increased family stress, and heightened uncertainty over future educational and work endeavors were the most immediate concerns. However, consistent with prior studies [10,28], AYA with cancer in this sample also noted resiliencies. AYA survivors experience growth through cancer diagnosis and treatment and have a more positive outlook toward the future with a stronger sense of identity and confidence in overcoming adversity.…”

“…Of note, there were few differences in responses across AYA subgroups based on age at time of survey completion, age at time of diagnosis, and whether AYA were on or off treatment at the time of survey completion indicating that there is consistency in the needs of AYA across this developmental period and the cancer treatment continuum. Based on the qualitative data, limitations to HRQL associated with cancer and treatment challenges paralleled domains noted by Nightingale and colleagues [10]. These included concerns about body image, family life, friendships and romance, and school.…”

“…Psychosocial challenges for AYA with cancer include understanding their diagnosis, treatment-related side effects, interpersonal difficulties in remaining connected with peers, and becoming independent of their families in terms of self-care, decisionmaking, and education/employment during and after treatment [8,9]. As AYA move off treatment, quantitative and qualitative research has identified key domains of AYA HRQL spanning physical and psychosocial functioning, including physical, body image, psychological, social, and fertility/sexuality that are affected by cancer and treatment [10]. Specifically, body image and sexuality are two major concerns for AYA [11][12][13], and AYA experience negative changes in body image that can lead to lowered self-esteem [14,15].…”

A literature Review of the Results from Nursing and Psychosocial Research within Swedish Pediatric Oncology

“…According to Patenaude and Kupst [9], low or average levels of distress are found in survivors of paediatric cancer; however there are also subsets of more vulnerable patients. A literature review on qualitative studies identified seven important areas of wellbeing: physical, social, psychological, spiritual and fertility/sexual wellbeing, resilience and body appearance [10].…”

Measuring pediatric patient-reported outcomes: good progress but a long way to go

“…Given that the survival rate is greater than 80%, pediatric cancer patients are facing many life challenging issues. For example, one recent article discusses the potential missing content of PROs critical to childhood cancer survivors by reviewing the published “qualitative” studies and comparing the results to the conventional PRO framework with physical, psychological and social domains [13]. This study found that childhood survivors are behind in several developmental milestones, and survivors have unique concerns related to cancer such as normalcy, independency, fertility, self-identity, and body image.…”