Cancer experiences and health-related quality of life among racial and ethnic minority survivors of young adult cancer: a mixed methods study

Abstract

Purpose Young adult (YA) racial and ethnic minority survivors of cancer (diagnosed ages 18–39) experience significant disparities in health outcomes and survivorship compared to non-minorities of the same age. However, little is known about the survivorship experiences of this population. The purpose of this study is to explore the cancer experiences and health-related quality of life (HRQOL) among YA racial/ethnic minorities in an urban US city. Methods Racial and ethnic minority YA cancer survivors (0 to 5 years post-treatment) were recruited from a comprehensive cancer center using a purposive sampling approach. Participants (n=31) completed semi-structured interviews, the FACT-G (physical, emotional, social well-being), and the FACIT-Sp (spiritual well-being). Mixed methods data were evaluated using thematic analysis and analysis of covariance (ANCOVA). Results The majority of survivors were women (65%), single (52%) and Hispanic (42%). Across interviews, the most common themes were: “changes in perspective,” “emotional impacts,” “received support,” and “no psychosocial changes.” Other themes varied by racial/ethnic subgroups, including, “treatment effects” (Hispanics), “behavior changes” (Blacks), and “appreciation for life” (Asians). ANCOVAs (controlling for gender and ECOG performance status scores) revealed that race/ethnicity had a significant main effect on emotional (P=0.05), but not physical, social or spiritual HRQOL (P>0.05). Conclusions Our findings suggest that minority YA cancer survivors report complex positive and negative experiences. In spite of poor health outcomes, survivors report experiencing growth and positive change due to cancer. Variations in experiences and HRQOL highlight the importance of assessing cultural background to tailor survivorship care among YA racial and ethnic minorities.

Survivors’ Dilemma: Young Adult Cancer Survivors’ Perspectives of Work-Related Goals

“…We employed a maximum variation sampling strategy to select eligible participants that reflected a heterogenous sample on characteristics important to the study (i.e., sex, gender, race/ethnicity, age at diagnosis, type of work). Based on prior work of the research team (Dickson et al, 2011; Riegel et al, 2018) and the literature on YAs with cancer (Hauken et al, 2014; Munoz et al, 2016), we determined that interviews with 40 participants would provide sufficient data to achieve saturation, the point no new themes in the data are being identified.…”

“…Miller et al, 2007). YAs (20–39 years) are also described as a vulnerable cancer population (Bleyer et al, 2017; Graetz et al, 2019; Munoz et al, 2016); they confront health disparities, including access to care and diagnosis at more advanced disease stage, thus poorer prognosis (Liu et al, 2018; National Cancer Institute [NCI], 2018). The impact of cancer on work, including employment and education needed to achieve work-related goals (WRGs), is a critical determinant of health, quality of life, and financial well-being (Barr et al, 2016; Dahl et al, 2019), particularly for YAs given their many work years ahead (Chiyon Yi et al, 2019; Parsons et al, 2012).…”

Calidad de Vida: a systematic review of quality of life in Latino cancer survivors in the USA

“…Other measures of physical well-being reported among Hispanic/Latino cancer survivors included sexual functioning [16,86,116,117], pain [14,19,43,54,77,86,91,108,[118][119][120][121][122], fatigue [14,19,43,54,76,78,86,104,113,[119][120][121][123][124][125], nausea [19,86,91,96,119,121,123], hair loss [19,49,86,91,123], lymphedema [14,43], bowel problems [22,123], and "other symptom bother" [49,73,…”

Psychosocial and Biological Outcomes of Immersive, Mindfulness-Based Treks in Nature for Groups of Young Adults and Caregivers Affected by Cancer: Results from a Single Arm Program Evaluation from 2016–2021

“…Being diagnosed and treated for cancer during this age period often leads to experiencing a host of disconnecting life experiences [ 3 ]. This may include quitting or postponing educational or professional pursuits; losing important friendships and relationships; facing challenges with dating or finding a romantic partner; feeling overly dependent on one’s parents; becoming infertile or having other reproductive health issues; experiencing a myriad of short and long-term treatment-related side effects; and suffering from significant depression, anxiety, and fear of recurrence [ 3 , 4 , 5 , 6 , 7 , 8 ]. As a result, young adults affected by cancer are at high risk of experiencing the “adverse effect of disconnect”.…”