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1.
Cancer ; 130(7): 1031-1040, 2024 04 01.
Article in English | MEDLINE | ID: mdl-38163249

ABSTRACT

Adolescence and young adulthood are times of growth and change. For adolescents and young adults (AYAs) who are diagnosed with cancer, the demands of illness may compound normal developmental challenges and adversely affect physical, emotional, and social health. Nevertheless, AYAs have a tremendous capacity for psychosocial adaptation and resilience. Informed by the Transactional Model of Stress and Coping, observational studies in AYA oncology suggest consistent individual, social, and existential resources that may promote resilience. To date, few interventions have been designed to examine whether resilience can be taught and whether doing so affects patient-centered outcomes. Findings point to the potential value of multicomponent programs that include various skills-building strategies, such as stress management, mindfulness, gratitude, and positive reappraisal coping, among others. New research directions include the need to evaluate delivery strategies to enhance participant adherence and retention (e.g., eHealth modalities, optimization studies) and to examine program effectiveness in community-based oncology practices (e.g., less resource-rich settings in which most AYAs receive care). Ultimately, this scholarship may inform, refine, and strengthen intervention science in resilience more broadly.


Subject(s)
Mindfulness , Neoplasms , Resilience, Psychological , Young Adult , Humans , Adolescent , Adult , Neoplasms/therapy , Neoplasms/psychology , Coping Skills , Emotions
2.
Cancer ; 130(4): 553-562, 2024 02 15.
Article in English | MEDLINE | ID: mdl-38044705

ABSTRACT

BACKGROUND: In the general population, individuals with minoritized sexual orientation and gender identity have a higher burden of chronic health conditions than heterosexual individuals. However, the extent to which sexual orientation is associated with excess burden of chronic conditions in adolescent and young adult cancer survivors (AYACS) is unknown. METHODS: Lesbian, gay, and bisexual (LGB) AYACSs, LGB individuals without a history of cancer, and heterosexual AYACSs were identified by self-reported data from the cross-sectional National Health Interview Survey (2013-2020). Socioeconomic factors and the prevalence of chronic health conditions were compared between groups using χ2 tests. Logistic regression methods were used to determine the odds of chronic conditions by socioeconomic factors within and between survivor and comparison groups. RESULTS: One hundred seventy LGB cancer survivors, 1700 LGB individuals without a history of cancer, and 1700 heterosexual cancer survivors were included. Compared with heterosexual survivors, LGB survivors were less likely to be married (p = .001) and more likely to have never been married (p < .001). LGB survivors were more likely to have incomes between 100% and 200% of the federal poverty level than LGB individuals without a history of cancer (p = .012) and heterosexual survivors (p = .021) and were less likely to report incomes >200% the federal poverty level. LGB survivors had higher odds of chronic health conditions than LGB individuals without a history of cancer (odds ratio, 2.45; p < .001) and heterosexual survivors (odds ratio, 2.16; p = .003). CONCLUSIONS: LGB AYACSs are at increased risk of having chronic health conditions compared with both LGB individuals without a history of cancer and heterosexual AYACSs.


Subject(s)
Neoplasms , Sexual and Gender Minorities , Humans , Adolescent , Young Adult , Female , Male , Cross-Sectional Studies , Gender Identity , Bisexuality , Sexual Behavior , Survivors , Chronic Disease , Neoplasms/epidemiology
3.
Cancer ; 2024 Apr 27.
Article in English | MEDLINE | ID: mdl-38676935

ABSTRACT

BACKGROUND: Survivors of adolescent and young adult (AYA) cancer experience significant psychological distress and encounter barriers to accessing mental health care. Few studies have investigated racial/ethnic disparities in psychological health outcomes among AYA survivors, and none have compared outcomes within a racially minoritized population. METHODS: National Health Interview Survey data (2010-2018) were analyzed that identified non-Hispanic Black (hereafter, Black) survivors of AYA cancer and age- and sex-matched Black noncancer controls. Sociodemographic factors, chronic health conditions, modifiable behaviors (smoking and alcohol use), and psychological outcomes were assessed with χ2 tests. Logistic regression models, adjusted for survey weights, were used to evaluate the odds of psychological distress by cancer status after adjusting for covariates. Interactions between variables and cancer status were investigated. RESULTS: The study included 334 Black survivors of AYA cancer and 3340 Black controls. Compared to controls, survivors were more likely to report moderate/severe distress (odds ratio [OR], 1.64; p < .001), use mental health care (OR, 1.53; p = .027), report an inability to afford mental health care (OR, 3.82; p < .001), and use medication for anxiety and/or depression (OR, 2.16; p = .001). Forty-one percent of survivors reported moderate/severe distress, and only 15% used mental health care. Among survivors, ages 18-39 years (vs. 40-64 years) and current smoking (vs. never smoking) were associated with the presence of moderate/severe distress. Among survivors with distress, high poverty status was associated with reduced utilization of mental health care. CONCLUSIONS: A cancer diagnosis for a Black AYA is associated with greater psychological distress within an already vulnerable population.

4.
BMC Cancer ; 24(1): 126, 2024 Jan 24.
Article in English | MEDLINE | ID: mdl-38267900

ABSTRACT

BACKGROUND: Adolescents and young adults (AYAs) with cancer, defined as individuals aged 15-39 years at initial cancer diagnosis, form a unique population; they face age-specific issues as they transition to adulthood. This paper presents the protocol for the development of a core outcome set (COS) for AYAs with cancer. METHODS: The methodological standards from the Core Outcome Measures in Effectiveness Trials (COMET) and the International Consortium for Health Outcomes Measurement (ICHOM) for COS development will guide the development of the COS for AYAs with cancer. The project will consist of the following phases: (1) define the scope of the COS; (2) establish the need for a COS in this field (3) assemble an international, multi-stakeholder working group; (4) develop a detailed protocol; (5) determine "what to measure" (i.e., outcomes); (6) determine "how to measure" (i.e., measures); and (7) determine "case-mix" variables. CONCLUSIONS: The development of a COS for AYAs with cancer will facilitate the implementation of efficient and relevant standards for data collection, both for clinical trials and in routine healthcare, thereby increasing the usefulness of these data to improve the value of the care given to these underserved young cancer patients.


Subject(s)
Health Facilities , Neoplasms , Humans , Adolescent , Young Adult , Data Collection , Neoplasms/diagnosis , Neoplasms/therapy , Vulnerable Populations
5.
J Psychosoc Oncol ; 42(1): 16-31, 2024.
Article in English | MEDLINE | ID: mdl-36960673

ABSTRACT

PURPOSE: In this pilot study, we evaluated the feasibility of implementing the Needs Assessment & Service Bridge (NA-SB)- an intervention to address the pervasive unmet needs of adolescents and young adults (AYAs) during cancer treatment. METHODS: We conducted a mixed methods single-arm feasibility pilot study of NA-SB at the North Carolina Basnight Cancer Hospital. Eligible participants were AYAs ages 18-39 in active cancer treatment. After receiving NA-SB, participants completed a postintervention survey assessing their perceptions of NA-SB. We interviewed participating providers to assess their implementation experiences. RESULTS: On average, AYA participants (n = 26) rated NA-SB's feasibility as 4.5/5, its acceptability as 4.5/5, and its appropriateness as 4.4/5. 77% of participants agreed or strongly agreed that their needs were met in the study period. CONCLUSION: This pilot study generated preliminary evidence to establish NA-SB's feasibility as well as proof of concept for the intervention as a viable approach for identifying and addressing AYAs' unmet needs.


Subject(s)
Neoplasms , Humans , Adolescent , Young Adult , Needs Assessment , Pilot Projects , Feasibility Studies , Neoplasms/therapy , Surveys and Questionnaires
6.
J Relig Health ; 63(1): 393-409, 2024 Feb.
Article in English | MEDLINE | ID: mdl-38169027

ABSTRACT

Religion and spirituality (R/S) have been linked to better physical and mental health. The US government has funded several research studies that include a focus on R/S but the amount of support over the last several years appears to be declining. To better understand these funding trends for R/S and health research, we chose relevant comparisons from projects that include a focus on social support and optimism. We identified total amount of funding, change in funding patterns over time, and characteristics of funded projects from a large database of US research projects (Federal RePORTER). We reviewed 5093 projects for social support and 6030 projects for optimism before narrowing the number of eligible studies to 170 and 13, respectively. Social support projects received the largest investment of $205 million dollars. Funded awards for social support and optimism remained stable over time while R/S decreased (p = 0.01), intervention research was more characteristic and studies of African-American/Black participants were less characteristic of funded projects in social support than of R/S (ps < 0.001). Future research for R/S and health would likely benefit from continued focus on minority communities and on identifying and developing appropriate interventions to support individual and community health and well-being.


Subject(s)
Religion , Spirituality , Humans , Mental Health , Minority Groups , Social Support
7.
Cancer ; 129(19): 2946-2965, 2023 10 01.
Article in English | MEDLINE | ID: mdl-37489837

ABSTRACT

BACKGROUND: Social isolation and connectedness are social determinants of health that have demonstrated effects on cancer-related outcomes. These constructs have been systematically evaluated among pediatric and older adult cancer populations. In this review, the authors evaluated the prevalence, correlates, and psychosocial implications of social isolation and connectedness among young adult (YA) cancer survivors aged 18-39 years. METHODS: Peer-reviewed articles published in English before June 2021 were identified from database searches and included articles' reference lists according to PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines. Included articles described studies that assessed social isolation and/or connectedness among YA cancer survivors. RESULTS: In total, 5094 unique records were identified; 4143 were excluded after title/abstract screening, and 907 were excluded after full-text review. Forty-four articles were included. Few studies used validated measures or directly assessed social isolation or connectedness. Social isolation was similarly prevalent among YAs and older cancer survivors and noncancer populations. Demographic, clinical, and behavioral risk and protective factors for social isolation were identified. Social isolation was related to worse psychological well-being, whereas social connectedness was often, but not always, related to better psychological well-being. CONCLUSIONS: This growing literature underscores the relevance of social isolation and connectedness as important health determinants among YA cancer survivors. The identified risk and protective factors can identify YAs who especially may benefit from screening for social isolation. Future studies are needed that directly, reliably, and validly evaluate social isolation and connectedness to inform the development of interventions to decrease isolation and increase connectedness.


Subject(s)
Cancer Survivors , Neoplasms , Humans , Young Adult , Child , Aged , Social Isolation/psychology , Neoplasms/psychology
8.
J Natl Compr Canc Netw ; 21(8): 881-888, 2023 08.
Article in English | MEDLINE | ID: mdl-37549915

ABSTRACT

Individuals diagnosed with cancer as adolescents and young adults (AYAs; ages 15-39 years) face unique vulnerabilities. Compared with individuals diagnosed when younger (≤14 years) or older (≥40 years), AYAs have not seen the same improvement in survival. Furthermore, they sit at a complex moment of social, emotional, and cognitive development, and have a unique interface with the healthcare system. With these observations, NCI prioritized addressing the unique vulnerabilities among AYAs with cancer, and NCCN developed guidelines regarding optimal AYA cancer care. Improvements in certain locales have been seen in the wake of this focus on AYAs, suggesting that continuing to consider AYA outcomes in the context of their specific needs is critical as we strive toward additional improvements. However, it is key to consider the drivers of these outcomes to continue this trajectory. This review presents a holistic conceptual model that includes factors that influence outcomes among AYAs with cancer, including domains in these levels that influence both clinical outcomes (such as relapse and survival) and health-related quality of life (HRQoL). These include domains at the patient level, such as social constructs (race/ethnicity, socioeconomic status), behavior (adherence, risk-taking), biologic characteristics (cancer biology, host genetics), medical treatment (treatment regimen, risk-based survivorship care), and treatment-related toxicities. The model also includes domains at the system level, which include treatment location (NCI designation, facility model, AYA program presence), clinical trial enrollment, transdisciplinary communication, fertility preservation, and psychosocial support. Recognizing these multiple factors at the level of the individual and the healthcare system influence AYA outcomes (from HRQoL to survival), it is key not only to consider patient-level interventions and development of novel cancer agents but also to develop systems-level interventions that can be executed in parallel. In this way, the impact can be expanded to a vast number of AYAs.


Subject(s)
Fertility Preservation , Neoplasms , Humans , Adolescent , Young Adult , Quality of Life/psychology , Neoplasms/diagnosis , Delivery of Health Care , Communication
9.
J Natl Compr Canc Netw ; 21(7): 725-731.e1, 2023 07.
Article in English | MEDLINE | ID: mdl-37433436

ABSTRACT

BACKGROUND: Cardiovascular disease (CVD) is a leading cause of morbidity and mortality among adolescents and young adults (AYAs) diagnosed with cancer. The aim of this study was to assess the incidence and predictors of left ventricular systolic dysfunction (LVSD) and hypertension among AYAs receiving VEGF inhibition compared with non-AYAs. METHODS: This retrospective analysis used data from the ASSURE trial (ClinicalTrials.gov identifier: NCT00326898), in which participants with nonmetastatic, high-risk, renal cell cancer were randomized to sunitinib, sorafenib, or placebo. The incidence of LVSD (left ventricular ejection fraction decrease >15%) and hypertension (blood pressure ≥140/90 mm Hg) were compared using nonparametric tests. Multivariable logistic regression examined the association between AYA status, LVSD, and hypertension while adjusting for clinical factors. RESULTS: AYAs represented 7% (103/1,572) of the population. Over a study treatment period of 54 weeks, the incidence of LVSD was not significantly different among AYAs (3%; 95% CI, 0.6%-8.3%) versus non-AYAs (2%; 95% CI, 1.2%-2.7%). The incidence of hypertension was significantly lower among AYAs (18%; 95% CI, 7.5%-33.5%) compared with non-AYAs (46%; 95% CI, 41.9%-50.4%) in the placebo arm. In the sunitinib and sorafenib groups, the incidence of hypertension for AYAs compared with non-AYAs was 29% (95% CI, 15.1%-47.5%) versus 47% (95% CI, 42.3%-51.7%), and 54% (95% CI, 33.9%-72.5%) versus 63% (95% CI, 58.6%-67.7%), respectively. AYA status (odds ratio, 0.48; 95% CI, 0.31-0.75) and female sex (odds ratio, 0.74; 95% CI, 0.59-0.92) were each associated with a lower risk of hypertension. CONCLUSIONS: LVSD and hypertension were prevalent among AYAs. CVD among AYAs is only partially explained by cancer therapy. Understanding CVD risk among AYA cancer survivors is important for promoting cardiovascular health in this growing population.


Subject(s)
Cardiovascular Diseases , Hypertension , Kidney Neoplasms , Adolescent , Female , Young Adult , Humans , Vascular Endothelial Growth Factor A , Retrospective Studies , Sorafenib/therapeutic use , Stroke Volume , Sunitinib/therapeutic use , Ventricular Function, Left , Hypertension/drug therapy , Hypertension/epidemiology , Cardiovascular Diseases/epidemiology , Cardiovascular Diseases/etiology
10.
Psychooncology ; 32(9): 1363-1371, 2023 09.
Article in English | MEDLINE | ID: mdl-37381114

ABSTRACT

OBJECTIVE: Developmental disruption contributes to poor psychosocial outcomes among adolescents and young adults (AYAs) with cancer, though indicators of AYAs' developmental status are not well understood. In this study, we describe perceived adult status as a novel developmental indicator and examine its associations with social milestones achievements and health-related quality of life (HRQoL). METHODS: For this secondary analysis, AYAs with cancer were recruited using a 2 (on/off treatment) × 2 [emerging adults (EAs) 18-25 years-old, young adults (YAs) 26-39 years-old] stratified sampling design through an online research panel. Surveys assessed perceived adult status (i.e., self-perception of the extent to which one has reached adulthood), social milestones (marital, child-rearing, employment, educational status), demographic and treatment characteristics, and HRQoL. Generalized linear models tested associations between perceived adult status, social milestones, and HRQoL. RESULTS: AYAs (N = 383; Mage  = 27.2, SD = 6.0) were majority male (56%) and treated with radiation without chemotherapy (37%). Most EAs (60%) perceived they had reached adulthood in some ways; most YAs (65%) perceived they had reached adulthood. EAs who perceived they had reached adulthood were more likely to be married, raising a child, and working than EAs who did not perceive they had reached adulthood. Among EAs, lower perceived adult status was associated with lower HRQoL when accounting for social milestones. Among YAs, perceived adult status was not associated with social milestones and neither perceived adult status nor social milestones were associated with HRQoL. CONCLUSIONS: Perceived adult status may be a useful developmental indicator for EAs with cancer. Findings highlight unique developmental needs of EAs and utility of patient perspectives for understanding developmental outcomes.


Subject(s)
Neoplasms , Quality of Life , Humans , Male , Young Adult , Adolescent , Adult , Quality of Life/psychology , Neoplasms/therapy , Neoplasms/psychology , Self Concept
11.
Psychooncology ; 32(12): 1918-1929, 2023 Dec.
Article in English | MEDLINE | ID: mdl-37955581

ABSTRACT

PURPOSE: Survivors of adolescent and young adult (AYA) cancer experience psychological distress and insufficient access to mental health care. Few studies have investigated racial/ethnic disparities in psychological health outcomes in this population. This study compared psychological distress, mental health care use, and inability to afford mental health care between Hispanic/Latino survivors of AYA cancer and Hispanic/Latino controls. METHODS: The National Health Interview Survey data (2010-2018) were analyzed to identify Hispanic/Latino survivors of AYA cancer and Hispanic/Latino age- and sex-matched non-cancer controls. Sociodemographic, chronic health, modifiable factors, and psychological outcomes were compared using chi-square tests. Logistic regression models with survey weights were used to assess the log-odds of psychological distress in relation to covariates, along with the cancer group. Interactions were evaluated between each variable and cancer group. RESULTS: The study included 370 Hispanic/Latino survivors of AYA cancer (mean time since diagnosis = 12.34 years) and 3700 Hispanic/Latino controls. Compared to controls, survivors were more likely to report moderate/severe distress (OR = 2.23, p < 0.001), use of mental health care (OR = 2.11, p < 0.001) and inability to afford mental health care (OR = 3.05, p < 0.001). Forty-one percent of survivors reported moderate/severe distress and only 16% utilized mental health care. Among survivors, having more than two chronic health conditions and public insurance (compared to private insurance) were associated with the presence of moderate/severe distress. Among survivors experiencing moderate/severe distress, lack of insurance was associated with decreased utilization of mental health care. CONCLUSIONS: Having cancer as an AYA may exacerbate disparities in psychological health within the Hispanic/Latino population.


Subject(s)
Cancer Survivors , Mental Health Services , Neoplasms , Patient Acceptance of Health Care , Psychological Distress , Adolescent , Humans , Young Adult , Hispanic or Latino/psychology , Neoplasms/therapy , Neoplasms/psychology , Cancer Survivors/psychology
12.
Support Care Cancer ; 31(4): 230, 2023 Mar 24.
Article in English | MEDLINE | ID: mdl-36961516

ABSTRACT

PURPOSE: Radiation therapy (RT) is a critical component of treatment for adolescents and young adults (AYAs, age 15-39 years old) diagnosed with cancer. Limited prior studies have focused on AYAs receiving RT despite the potentially burdensome effects of RT. We reviewed the literature to assess health-related quality of life (HRQOL) in AYAs with cancer who received RT. METHODS: The MEDLINE, EMBASE, and Web of Science databases were searched in January 2022 to identify studies that analyzed HRQOL measured by patient-reported outcomes in AYAs who received RT. After title (n = 286) and abstract (n = 58) screening and full-text review (n = 19), articles that met eligibility criteria were analyzed. RESULTS: Six studies were analyzed. Two studies included AYAs actively receiving treatment and all included patients in survivorship; time between diagnosis and HRQOL data collection ranged from 3 to > 20 years. Physical and mental health were commonly assessed (6/6 studies) with social health assessed in three studies. AYA-relevant HRQOL needs were rarely assessed: fertility (1/6 studies), financial hardship (1/6), body image (0/6), spirituality (0/6), and sexual health (0/6). No study compared HRQOL between patients actively receiving RT and those post-treatment. None of the studies collected HRQOL data longitudinally. CONCLUSION: HRQOL data in AYAs receiving RT is limited. Future studies examining longitudinal, clinician- vs. patient-reported, and AYA-relevant HRQOL are needed to better understand the unique needs in this population.


Subject(s)
Neoplasms , Quality of Life , Humans , Adolescent , Young Adult , Adult , Quality of Life/psychology , Neoplasms/therapy , Mental Health , Survivorship , Patient Reported Outcome Measures
13.
Qual Life Res ; 32(1): 273-283, 2023 Jan.
Article in English | MEDLINE | ID: mdl-35962916

ABSTRACT

PURPOSE: The Shift and Persist model provides an informative framework to understand how adolescent and young adult (AYA) cancer patients and survivors (ages 15-39) may withstand stress and thrive despite adversity. The goal of the present study was to examine the psychometric properties of the Shift and Persist Questionnaire (SPQ) in this population and provide guidelines for interpretation. METHODS: AYA cancer patients and survivors were recruited via an online research panel. Participants reported demographics and health history and completed the SPQ and Patient-Reported Outcome Measurement Information System 29-item profile (PROMIS®-29). We evaluated the structural validity, internal consistency, and construct validity of the SPQ. Minimally important differences (MIDs) were estimated to inform SPQ score interpretation. RESULTS: 572 eligible individuals completed the survey. On average, participants were aged 24 (SD = 7) at evaluation. Of the participants, 43.5% were female, 77.1% were white, and 17.5% were Hispanic (across races). The two-factor structure of the SPQ demonstrated very good structural validity (CFI > 0.95, SRMR < 0.08), and construct validity with PROMIS-29® domains (convergent Rs = 0.17 to 0.43, divergent Rs = - 0.11 to - 0.51). Internal consistency was adequate (ω = 0.76-0.83). Recommended MIDs were 1 point for the Shift subscale, 1-2 point(s) for the Persist subscale, and 2-3 points for the total SPQ score. CONCLUSION: The SPQ is a psychometrically sound measure of skills that contribute to resilience in AYA cancer patients and survivors. MID recommendations enhance the interpretability of the SPQ in this population. Future studies examining shifting and persisting in this population may benefit from administering the SPQ.


Subject(s)
Neoplasms , Quality of Life , Humans , Female , Young Adult , Adolescent , Male , Reproducibility of Results , Quality of Life/psychology , Surveys and Questionnaires , Psychometrics , Survivors
14.
Int J Behav Med ; 30(5): 639-650, 2023 Oct.
Article in English | MEDLINE | ID: mdl-36890329

ABSTRACT

BACKGROUND: Young adult (YA) cancer survivors experience clinically significant distress and have limited access to psychosocial support. Given growing evidence for unique adaptive benefits of positive emotion in the context of health-related and other life stress, we developed an eHealth positive emotion skills intervention for post-treatment survivors called EMPOWER (Enhancing Management of Psychological Outcomes With Emotion Regulation) and evaluated feasibility and proof of concept for reducing distress and enhancing well-being. METHOD: In this single-arm pilot feasibility trial, post-treatment YA cancer survivors (ages 18-39) participated in the EMPOWER intervention which included 8 skills (e.g., gratitude, mindfulness, acts of kindness). Participants completed surveys at baseline (pre-intervention), 8 weeks (post-intervention), and 12 weeks (1-month follow-up). Primary outcomes included feasibility (assessed by participation percentage) and acceptability (would recommend EMPOWER skills to a friend). Secondary outcomes included psychological well-being (mental health, positive affect, life satisfaction, meaning/purpose, general self-efficacy) and distress (depression, anxiety, anger). RESULTS: We assessed 220 YAs for eligibility; 77% declined. Of those screened, 44 (88%) were eligible and consented, 33 began the intervention, and 26 (79%) completed the intervention. Overall retention was 61% at 12 weeks. Average acceptability ratings were high (8.8/10). Participants (M = 30.8 years, SD = 6.6) were 77% women, 18% racial/ethnic minorities, and 34% breast cancer survivors. At 12 weeks, EMPOWER was associated with improved mental health, positive affect, life satisfaction, meaning/purpose, and general self-efficacy (ps < .05, ds = .45 to .63) and decreased anger (p < .05, d = - 0.41). CONCLUSION: EMPOWER demonstrated evidence of feasibility and acceptability as well as proof of concept for enhancing well-being and reducing distress. Self-guided, eHealth interventions show promise for addressing YA cancer survivors' needs and warrant additional research to optimize survivorship care. TRIAL REGISTRATION: ClinicalTrials .gov NCT02832154,  https://clinicaltrials.gov/ct2/show/NCT02832154.


Subject(s)
Cancer Survivors , Neoplasms , Telemedicine , Humans , Female , Young Adult , Male , Cancer Survivors/psychology , Psychological Well-Being , Feasibility Studies , Emotions , Neoplasms/therapy , Neoplasms/psychology
15.
Psychooncology ; 31(4): 597-605, 2022 04.
Article in English | MEDLINE | ID: mdl-34699110

ABSTRACT

BACKGROUND: Cancer and its treatments can result in substantial financial burden that may be especially distressing for adolescents and young adults (AYAs) since they are at a developmental stage focused on completing one's education and establishing independence. The purpose of this study was to develop a conceptual model of financial burden among AYA cancer patients to inform development of a financial burden measure. METHODS: In-depth concept elicitation interviews were conducted with a purposive-selected stakeholder sample (36 AYAs and 36 AYA oncology health care providers). The constant comparative method was used to identify themes that illustrate AYAs' experience of financial burden by stakeholder groups. RESULTS: Eleven financial burden themes emerged: (1) impact of socioeconomic status and age; (2) significant cancer costs; (3) indirect cost "ripple effects"; (4) limited awareness of costs (adolescents); (5) emotional impact; (6) feeling overwhelmed navigating the health care system; (7) treatment decision modifications; (8) reducing spending; (9) coping strategies; (10) financial support; and (11) long-lasting impact. The conceptual model highlights the importance of material, psychosocial, and behavioral domains of financial burden with an emphasis on phase along the cancer continuum and developmental stage in the experience of financial burden for AYAs. CONCLUSIONS: Issues presented in the voice of AYA patients and providers highlight the profound impact of financial burden in this survivor group. The next step in this work will be to develop and test a patient-reported measure of financial burden among AYA cancer survivors.


Subject(s)
Cancer Survivors , Neoplasms , Adaptation, Psychological , Adolescent , Cancer Survivors/psychology , Financial Stress , Humans , Neoplasms/psychology , Neoplasms/therapy , Survivors , Young Adult
16.
Psychooncology ; 31(8): 1354-1364, 2022 08.
Article in English | MEDLINE | ID: mdl-35416372

ABSTRACT

OBJECTIVE: Adolescent and young adult (AYA) cancer survivors are vulnerable to cancer-related financial burden, which is likely shared by their caregivers. This study aims to enhance an existing conceptual model of financial burden by conducting concept elicitation interviews with caregivers to generate knowledge that can be translated to inform instrumental and psychosocial support in cancer care. METHODS: Qualitative concept elicitation interviews were conducted with 24 caregivers of AYA cancer survivors (caregivers of adolescents, n = 12; caregivers of emerging adults, n = 12) recruited from four sites. Constant comparative methods were used to identify themes, and results were interpreted and organized into domains of the conceptual model. We also explored COVID-19 related financial impacts among a subset (n = 12) of caregivers. RESULTS: Seven themes emerged, which varied by age group and strengthened the conceptualization of the model. Themes centered on: (1) direct and indirect costs of cancer; (2) impact of socioeconomic status on financial burden; (3) caregiver desire to shield AYAs from distress due to financial burden; (4) strategies to manage cancer-related costs; (5) worries about AYAs' financial future; (6) seeking and receiving financial support; and (7) navigating the healthcare system. Findings also revealed that COVID-19 exacerbates financial burden for some caregivers. CONCLUSIONS: Building upon our prior work, we have adapted the conceptual model of financial burden to reflect perspectives of AYAs, oncology providers, and now, caregivers. An important next step is to develop a reliable and valid self-report measure of financial burden among caregivers of AYA cancer survivors.


Subject(s)
COVID-19 , Cancer Survivors , Neoplasms , Adolescent , Cancer Survivors/psychology , Caregivers/psychology , Financial Stress , Humans , Neoplasms/psychology , Neoplasms/therapy , Young Adult
17.
Psychooncology ; 31(11): 1933-1940, 2022 11.
Article in English | MEDLINE | ID: mdl-36121699

ABSTRACT

OBJECTIVE: Previous studies have examined whether spiritual well-being is associated with cancer outcomes, but minority populations are under-represented. This study examines associations of baseline spiritual well-being and change in spiritual well-being with change in distress and quality of life, and explores potential factors associated with changes in spiritual well-being among Hispanic women undergoing chemotherapy. METHODS: Participants completed measures examining spiritual well-being, distress, and quality of life prior to beginning chemotherapy and at weeks 7 and 13. Participants' acculturation and sociodemographic data were collected prior to treatment. Mixed models were used to examine the association of baseline spiritual well-being and change in spiritual well-being during treatment with change in distress and quality of life, and to explore whether sociodemographic factors, acculturation and clinical variables were associated with change in spiritual well-being. RESULTS: A total of 242 participants provided data. Greater baseline spiritual well-being was associated with less concurrent distress and better quality of life (p < 0.001), as well as with greater emotional and functional well-being over time (p values < 0.01). Increases in spiritual well-being were associated with improved social well-being during treatment, whereas decreases in spiritual well-being were associated with worsened social well-being (p < 0.01). Married participants reported greater spiritual well-being at baseline relative to non-married participants (p < 0.001). CONCLUSIONS: Greater spiritual well-being is associated with less concurrent distress and better quality of life, as well as with greater emotional, functional, and social well-being over time among Hispanic women undergoing chemotherapy. Future work could include developing culturally targeted spiritual interventions to improve survivors' well-being.


Subject(s)
Neoplasms , Quality of Life , Female , Humans , Quality of Life/psychology , Spirituality , Adaptation, Psychological , Neoplasms/drug therapy , Neoplasms/psychology , Hispanic or Latino
18.
Support Care Cancer ; 30(12): 10067-10076, 2022 Dec.
Article in English | MEDLINE | ID: mdl-36229547

ABSTRACT

PURPOSE: This study aimed to (1) develop TOGETHER-YA, an e-Health-delivered and group-based health-related quality of life (HRQOL) intervention for young adult (YA) cancer survivors aged 18-39 (Part 1), and (2) determine its initial feasibility and acceptability in a single-arm pilot trial (Part 2). METHODS: TOGETHER-YA is a manualized, 10-week intervention for YA survivors that includes elements of relaxation training, cognitive-behavioral therapy, and health education. In Part 1, content was adapted from existing evidence-based interventions with feedback from YAs (N = 22) in four iterative focus groups. In Part 2, YA survivors (N = 11) participated in a single-arm pilot trial of TOGETHER-YA. Intervention groups were led by a trained facilitator over videoconference. Primary outcomes were feasibility (i.e., recruitment, session attendance, retention) and acceptability (i.e., participant satisfaction). RESULTS: Focus groups reacted positively to TOGETHER-YA and provided actionable recommendations for enhancing its relevance and acceptability, which were implemented. In initial testing, all feasibility and acceptability benchmarks were met; 58% of eligible YAs were recruited, participants attended M = 6 intervention sessions (SD = 3), and 82% of participants were retained post-intervention. On average, participants "agreed" to "strongly agreed" with positive statements about the weekly sessions and the overall program. CONCLUSION: TOGETHER-YA was developed in collaboration with YA cancer survivors and found to be feasible and acceptable in initial testing. TOGETHER-YA is the first HRQOL intervention for a broad range of YA survivors that is eHealth-delivered for convenience and group-based for peer support. Future large-scale trials should test its efficacy for improving HRQOL. TRIAL REGISTRATION: NCT05048316, September 17, 2021; NCT05054569, September 23, 2021.


Subject(s)
Cancer Survivors , Neoplasms , Telemedicine , Humans , Young Adult , Quality of Life , Psychosocial Intervention , Feasibility Studies , Neoplasms/therapy
19.
J Pediatr Psychol ; 47(9): 991-1002, 2022 09 15.
Article in English | MEDLINE | ID: mdl-35543247

ABSTRACT

OBJECTIVE: Social relationships are a critical context for children's socioemotional development and their quality is closely linked with concurrent and future physical and emotional wellbeing. However, brief self-report measures of social relationship quality that translate across middle childhood, adolescence, and adulthood are lacking, limiting the ability to assess the impact of social relationships on health outcomes over time. To address this gap, this article describes the development and testing of the National Institutes of Health (NIH) Toolbox Pediatric Social Relationship Scales, which were developed in parallel with the previously-reported Adult Social Relationship Scales. METHODS: Item sets were selected from the NIH Toolbox adult self-report item banks in the domains of social support, companionship, and social distress, and adapted for use in preadolescent (ages 8-11 years) and adolescent (ages 12-18 years) cohorts. Items were tested across a U.S. community sample of 1,038 youth ages 8-18 years. Classical test and item response theory approaches were used to identify items for inclusion in brief unidimensional scales. Concurrent validity was assessed by comparing resultant scales to established pediatric social relationship instruments. RESULTS: Internal reliability and concurrent validity were established for five unique scales, with 5-7 items each: Emotional Support, Friendship, Loneliness, Perceived Rejection, and Perceived Hostility. CONCLUSIONS: These brief scales represent developmentally appropriate and valid instruments for assessing the quality of youth social relationships across childhood and adolescence. In conjunction with previously published adult scales, they provide an opportunity for prospective assessment of social relationships across the developmental spectrum.


Subject(s)
Interpersonal Relations , National Institutes of Health (U.S.) , Adolescent , Adult , Child , Humans , Prospective Studies , Psychometrics , Reproducibility of Results , United States
20.
Int J Behav Med ; 29(5): 676-684, 2022 Oct.
Article in English | MEDLINE | ID: mdl-35048316

ABSTRACT

BACKGROUND: This was a secondary analysis of a pilot randomized controlled trial (RCT) of mindfulness-based stress reduction (MBSR) among young adult (YA) survivors of cancer, which showed preliminary evidence for improving psychosocial outcomes. Secondary outcomes assessed were the feasibility of collecting biological data from YAs and preliminary effects of MBSR on markers of inflammation and cardiovascular function. METHOD: Participants were randomized to 8-week MBSR or a waitlist control condition. Participants provided whole blood spot samples for analysis of C-reactive protein (CRP) and interleukin (IL)-6 as well as blood pressure data in-person at baseline and 16-week follow-up. Feasibility was assessed with rates of providing biological data. Linear mixed effects modeling was used to evaluate preliminary effects of MBSR on inflammatory markers and blood pressure over time. RESULTS: Of 126 total participants enrolled, 77% provided biological data at baseline (n = 48/67 MBSR, n = 49/59 control). At 16 weeks, 97% of the 76 retained participants provided follow-up biological data (n = 34/35 MBSR, n = 40/41 control). Relative to the control group, MBSR was associated with decreased systolic blood pressure (p = 0.042, effect sizes (ES) = 0.45) and decreased diastolic blood pressure (p = 0.017, ES = 0.64). There were no changes in CRP or IL-6. CONCLUSION: This was the first study to explore the feasibility of collecting biological data from YA survivors of cancer and assess preliminary effects of MBSR on inflammatory and cardiovascular markers in an RCT. Minimally invasive biological data collection methods were feasible. Results provide preliminary evidence for the role of MBSR in improving cardiovascular outcomes in this population, and results should be replicated.


Subject(s)
Mindfulness , Neoplasms , Biomarkers , Blood Pressure , C-Reactive Protein , Humans , Interleukin-6 , Mindfulness/methods , Neoplasms/therapy , Pilot Projects , Stress, Psychological/psychology , Survivors/psychology , Treatment Outcome , Young Adult
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