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Cancer is a serious, worldwide life-threatening disease which can occur throughout people’s life span. Annually, 1 in 285 individuals is diagnosed with cancer before the age 20 (Ward, DeSantis, Robbins, Kohler, & Jemal, 2014). When diagnosed with cancer and when compared to people in other age groups, adolescents and very young adults are at a higher risk to experience a decreased quality of life (QOL) because of their unique developmental milestones including hormonal fluctuations and sensitive drug responses (Bleyer et al., 2008).
QOL, a broad subjective concept comprising physical health, psychological conditions, and social relationships (WHO Group, 1994, 1995), has been explored in research among adolescents and very young adults with cancer (Barakat, Marmer, & Schwartz, 2010; Hinds, Billups, et al., 2009; Ruccione, Lu, & Meeske, 2013); however, the examination of its depth and breadth is limited. Evidence shows that low QOL in individuals with cancer is associated with suicidal attempts (Hidalgo-Rasmussen & Martín, 2015) and poor treatment adherence (Avlonitou, Kapsimalis, Varouchakis, Vardavas, & Behrakis, 2012; Nabolsi, Wardam, & Al-Halabi, 2015). Because of its significance, QOL is now identified as a national goal in the Healthy People 2020 Objectives (Healthy People, 2015).
The current literature review discusses the dimensions of QOL and its influencing factors in adolescents and very young adults diagnosed with cancer using Ferrans and colleagues’ (2005) Health-Related Quality of Life (HRQOL) model as the guiding theoretical framework. HRQOL comprises three dimensions: characteristics of the individual, characteristics of the environment, and the individual’s biological function.
Purpose:
The current literature review discusses the dimensions of QOL and its influencing factors in adolescents and very young adults diagnosed with cancer using Ferrans and colleagues’ (2005) Health-Related Quality of Life (HRQOL) model as the guiding theoretical framework. HRQOL comprises three dimensions: characteristics of the individual, characteristics of the environment, and the individual’s biological function.
Methods:
A literature search was performed using three major health related databases: PubMed, PsychoINFO, and CINAHL. Keywords used included cancer* or neoplasm* or oncology* or tumor* or malignan* AND adolescen* or teen* or youth* or child* or pediatric* AND “quality of life” or “health-related quality of life.” Research articles were included in this review if: (1) participants were adolescents and/or very young adults aged 11-21 who experienced cancer of any kind; (2) QOL or HRQOL was either an independent or a dependent variable; (3) they were published in English during 2005-2015.
Results:
Fifteen research articles met the inclusion criteria and were included in the review. These research studies were conducted in five countries including the United States (n=9), the Netherlands (n=3), Finland (n=1), Canada (n=1), and Taiwan (n=1). Most studies used a cross-sectional design (n=11). The most common measure used (n=9) was the PedsQL v.4.0 (Pediatric Quality of Life Inventory, Version 4) which measures generic QOL (Varni, Burwinkle, Katz, Meeske, & Dickinson, 2002). This tool demonstrated high internal consistency ranging from 0.70-0.91 (Barakat et al., 2010; Parsons, Fairclough, Wang, & Hinds, 2012; Paxton et al., 2010). Only two out of 11 cross-sectional research articles used clear conceptual frameworks: one used the Pediatric Medical Traumatic Stress Model in combination with the Adolescent Resilience Model (Ruccione et al., 2013); and the other article used the model of environmental influences on HQROL (Hinds, Billups, et al., 2009).
QOL in Adolescents and Very Young Adults with Cancer
Evidence shows inconsistency of levels of QOL found in this population. These conflicting findings could have been a result of different QOL tools used, various characteristics of the participants, type of cancer, and treatment (i.e. age, cancer type, during or after treatment). Adolescents and very young adults with cancer in most studies (n=12) reported a high level of QOL (Lyon, Jacobs, Briggs, Cheng, & Wang, 2014; Parsons et al., 2012; Paxton et al., 2010; Ruccione et al., 2013). Only three studies found that the target population reported a low level of QOL especially in the physical and psychological domains, when compared to the general population (Barakat et al., 2010; Engelen et al., 2011; van Riel et al., 2014).
Characteristics of the Individual and the Individual’s Biological Function
Only a few studies examined the association between QOL and participants’ age and gender, and the results are conflicting (Barakat et al., 2010; Hinds, Billups, et al., 2009; Hinds, Gattuso, et al., 2009). A study in the U.S. found that age and gender were not associated with QOL (Barakat et al., 2010), while another U.S. study revealed that adolescents with osteosarcoma reported better QOL than children with the same diagnosis (Hinds, Billups, et al., 2009; Hinds, Gattuso, et al., 2009). Regarding the biological function, some studies have found that cancer type, treatment, and time since diagnosis/treatment were correlated with QOL (Hinds, Billups, et al., 2009; Mört, Salanterä, Matomäki, Salmi, & Lähteenmäki, 2011; Ruccione et al., 2013), while other studies did not find any relationship among the variables (Barakat et al., 2010; Grant et al., 2006). For instance, in one study lower psychosocial QOL was associated with central nervous system tumors, radiation therapy, and 1-2 year treatment duration (Ruccione et al., 2013). Regardless of conflicting results, gender, age, cancer type, and type of treatment should be taken into account as potential predictors of QOL.
Characteristics of the Environment
Three studies examined the characteristics of the environment in relation to QOL; high QOL was associated with positive relationships with friends and family (Barakat et al., 2010; Lyon et al., 2014; Ward-Smith, McCaskie, & Rhoton, 2007). Better family functioning predicted better QOL; and better family functioning and more parental overprotection predicted better psychosocial QOL (Barakat et al., 2010). In another study, a weekend retreat intervention did not directly affect QOL; however, participants indicated that their self-esteem and confidence were better as a result of such an intervention (Ward-Smith et al., 2007).
Symptom distress and Functional Status
Only one study examined the association between QOL and symptom distress (i.e. pain, insomnia, appetite, fatigue, etc.) and found that symptom distress significantly predicted physical, emotional, school functioning QOL in American adolescents with cancer (Hinds, Billups, et al., 2009). It is crucial to examine symptom distress in the target population so that nurses can reduce identified particular symptoms, thus improving the target population’s QOL. Only one U.S. study examined QOL and functional status and found that physical activity was significantly associated with QOL in adolescents with cancer (Paxton et al., 2010).
Conclusion:
Most studies among adolescents and very young adults diagnosed with cancer have been conducted in the USA. Levels of QOL and factors influencing QOL are inconsistent. No existing study examined the relationships of the target population with their friends or social support they received/perceived from their family and friends even though such relationships and support are crucial at this stage in their lives (Steinberg, 2014). Thus, it will be beneficial to explore relationships with peers and social support along with symptom distress, gender, age, cancer type, and type of treatment in relation to QOL in future research to fill the gap of knowledge in the target population.
Also, future studies should be conducted in other countries besides the USA so that results can be generalized worldwide. Using a QOL conceptual model and a more sophisticated statistical technique such as structural equation modeling will be helpful as QOL is a complex concept and is appropriate to be analyzed as a latent variable, a more holistic concept than an observed one. The goal of future QOL research in adolescents and very young adults with cancer is to maximize their QOL and treatment adherence and minimize their suicidal attemp.