Dataset Information

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 posttreatment) 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 the following: "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.

SUBMITTER: Munoz AR

PROVIDER: S-EPMC5083156 | biostudies-literature | 2016 Dec

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

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

Munoz Alexis R AR Kaiser Karen K Yanez Betina B Victorson David D Garcia Sofia F SF Snyder Mallory A MA Salsman John M JM

Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer 20160719 12

<h4>Purpose</h4>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.<h4>Methods</h4>Racial and ethnic minority ...[more]

PMID: 27435322

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Project description:ImportanceApproximately 1 in 5 new patients with head and neck cancer (HNC) in the US belong to racial and ethnic minority groups, but their survival rates are worse than White individuals. However, because most studies compare Black vs White patients, little is known about survival differences among members of racial and ethnic minority groups.ObjectiveTo describe differential survival and identify nonclinical factors associated with stage of presentation among patients with HNC belonging to racial and ethnic minority groups.Design, setting, and participantsThis population-based retrospective cohort study used data from the 2007 to 2016 Surveillance, Epidemiology, and End Results (SEER) database and included non-Hispanic Black, Asian Pacific Islander, American Indian/Alaska Native, and Hispanic patients with HNC. The data were analyzed from December 2020 to May 2021.Main outcomes and measuresOutcomes were time to event measures: (HNC-specific and all-cause mortality) and stage of presentation. Covariates included nonclinical (age at diagnosis, sex, race and ethnicity, insurance status, marital status, and a composite socioeconomic status [SES]) and clinical factors (stage, cancer site, chemotherapy, radiation, and surgery). A Cox regression model was used to adjust associations of covariates with the hazard of all-cause death, and a Fine and Gray competing risks proportional hazards model was used to estimate associations of covariates with the hazard of HNC-specific death. A proportional log odds ordinal logistic regression identified which nonclinical factors were associated with stage of presentation.ResultsThere were 21 966 patients with HNC included in the study (mean [SD] age, 56.02 [11.16] years; 6072 women [27.6%]; 9229 [42.0%] non-Hispanic Black, 6893 [31.4%] Hispanic, 5342 [24.3%] Asian/Pacific Islander, and 502 [2.3%] American Indian/Alaska Native individuals). Black patients had highest proportion with very low SES (3482 [37.7%]) and the lowest crude 5-year overall survival (46%). After adjusting for covariates, Hispanic individuals had an 11% lower subdistribution hazard ratio (sdHR) of HNC-specific mortality (sdHR, 0.89; 95% CI, 0.83-0.95), 15% lower risk for Asian/Pacific Islander individuals (sdHR, 0.85; 95% CI, 0.78-0.93), and a trending lower risk for American Indian/Alaska Native individuals (sdHR, 0.85; 95% CI, 0.71-1.01), compared with non-Hispanic Black individuals. Race, sex, insurance, marital status, and SES were consistently associated with all-cause mortality, HNC-specific mortality, and stage of presentation, with non-Hispanic Black individuals faring worse compared with individuals of other racial and ethnic minority groups.Conclusions and relevanceIn this cohort study that included only patients with HNC who were members of racial and ethnic minority groups, Black patients had significantly worse outcomes that were not completely explained by stage of presentation. There may be unexplored multilevel factors that are associated with social determinants of health and disparities in HNC outcomes.

Project description:(1) Background: Adolescents and young adults (AYAs) who have been diagnosed with and treated for cancer have unique healthcare needs, but more research is needed to inform developmentally targeted cancer care for this population. The purpose of the current analyses was to describe the physical and psychosocial concerns and experiences of AYA cancer survivors during the post-treatment phase. (2) Methods: A national survey was conducted by the Canadian Partnership Against Cancer to evaluate the experiences and unmet needs of cancer survivors (?18 years) within the first 5 years following cancer treatment. The current analyses were conducted on the AYA survivor population (18-34 years). (3) Results: A total of 575 surveys were completed by AYAs. Of these, 61% were female, 51% were married/partnered, and 52% were 1-3 years post treatment. Approximately three-quarters report their physical or emotional health as good/very good. Overall, 88% reported at least one physical concern [mean of 3.98+2.11 physical concerns (range 0-9)], 90% reported at least one emotional concern [mean of 3.77+1.75 emotional concern (range 0-6)], and 79% reported at least one practical challenge [mean of 2.39+1.28 practical concerns (range 0-5)]. The most common concerns were anxiety/worry about cancer returning (83%), fatigue/tiredness (78%), and depression/loss of interest in daily activities (66%). On average, 43% of those reporting a concern sought help. Common reasons for not seeking help included not wanting to ask, being told that it was normal to feel the way they did, or embarrassment. Of those who did seek help, 37% encountered difficulty obtaining assistance. (4) Conclusions: These results suggest that post-treatment AYA cancer survivors have a high rate and number of physical, psychosocial, and practical concerns and are often not seeking or receiving help to address these. Proactive approaches to characterizing and eliminating barriers to obtaining appropriate care are needed.

Project description:PurposeThis study aimed to evaluate the impact of the COVID-19 pandemic on adolescent and young adult (AYA) cancer survivors.MethodsWe conducted a cross-sectional survey of AYAs aged 18-49 with cancer in Canada between January and February 2021. Data from survivors, defined as AYAs more than one year off cancer treatment, were analysed. Multiple logistic regression was used to identify factors associated with psychological distress, loneliness and insomnia.ResultsThe analysis included 384 survivors. Moderate-to-severe psychological distress was reported by 257 (68.9%) survivors and was associated with an income ≥ $60,000 (adjusted odds ratio [AOR] 2.15, 95% CI 1.11-4.17) and the presence of a pre-existing chronic physical health condition (AOR 2.05, 95% CI 1.18-3.56). Loneliness was reported by 204 (54.0%) survivors and was associated with being unemployed (AOR 2.26 95%CI 1.18-4.31), pandemic causing finances to be worse (AOR 1.82, 95%CI 1.08-3.06) and the presence of a pre-pandemic mental health condition (AOR 1.88, 95% CI 1.03-3.42). Clinical insomnia was reported by 74 (19.5%) survivors and was associated with employment status as a student (AOR 3.00, 95% CI 1.08-8.29) or unemployed (AOR 3.97, 95% CI 1.46-10.83), earning $60,000 or more in the year 2020 (AOR 4.36, 95% CI 1.43-13.32), having haematologic cancer (AOR 2.21, 95% CI 1.05-4.70) and being single (AOR 2.52, 95% CI 1.08-5.91). Pandemic negatively affected employment, finances, physical activity, cancer care and substance use for 73.9%, 66.5%, 32.5%, 21.8% and 19.2% of survivors, respectively. Worries about finances, contracting COVID-19, cancer treatment increasing the risk of COVID-19 infection, and having poor health outcomes from contracting COVID-19 were reported by 46.0%, 45.6%, 55.0% and 47.3% of survivors, respectively.ConclusionsThe COVID-19 pandemic has had a significant impact on AYA cancer survivors, and these individuals report high levels of psychological distress, insomnia and loneliness.Implications for cancer survivorsCancer survivors are at risk for worsening mental and physical health outcomes during the COVID-19 pandemic. Targeted interventions and support programs are urgently needed to support the mental health of AYA cancer survivors and optimize their health outcomes.

Project description:BackgroundHealthcare experiences associated with perceived racial/ethnic discrimination among patients are poorly understood.ObjectiveIdentify domains of patient dissatisfaction associated with perceived racial/ethnic discrimination among patients with pain.DesignSemi-structured telephone surveys completed in 2013-2015.ParticipantsWhite, African American, and Latino participants who reported receiving pain management from 25 Veterans Affairs (VA) Medical Centers.Main measuresSurveys included open-ended questions about healthcare satisfaction/dissatisfaction and a measure of perceived racial/ethnic-based discrimination while seeking VA healthcare. Binary indicators for ten qualitative domains of dissatisfaction were derived from open-ended questions. We used multilevel models to identify dissatisfaction domains associated with perceived discrimination, adjusting for patient characteristics and site. Within domains associated with discrimination, we identified the most frequent codes and examined whether patients primarily referenced clinical or non-clinical staff in their experiences.Key resultsOverall, 622 participants (30.4% White, 37.8% African American, 31.8% Latino; 57.4% female; mean age = 53.4) reported a median discrimination score of 1.0 (IQR: 1.0-1.3) on a scale of 1 to 5; 233 (37.5%) perceived any racial/ethnic discrimination in healthcare. Individually, 7 of 10 qualitative domains were significantly associated with perceived discrimination: dissatisfaction with care quality, facilities, continuity of care, interactions with staff, staff demeanor, unresolved pain, and pharmacy services (ps<0.005). In combined models stratified by racial/ethnic group, 3 domains remained statistically significant: poor interactions for Latinos (adjOR = 5.24, 95% CI = 2.28-12.06), negative demeanor for African Americans (adjOR = 2.82, 95% CI = 1.45-5.50), and unresolved pain for Whites (adjOR = 6.23, 95% CI = 2.39-16.28). Clinical staff were referenced more often than non-clinical staff for all domains (interactions: 51% vs. 30%; demeanor: 46% vs. 15%; unresolved pain: 18% vs. 1%, respectively).ConclusionNegative interpersonal experiences and unresolved pain are strong correlates of perceived racial/ethnic discrimination among patients with pain. Future studies should test whether interventions targeting these domains reduce patient perceptions of racial/ethnic discrimination in healthcare.

Dataset Information

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

Purpose

Methods

Results

Conclusions

Publications

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

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