Improving Adolescent and Young Adult Self-Reported Data in ECOG-ACRIN Trials
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ABSTRACT:
DISEASE(S): Neoplasms, Germ Cell And Embryonal,Breast Cancer, Nos,Thyroid Neoplasms,Cervical Cancer, Nos,Lymphoma, Nos,Sarcoma,Melanoma,Testicular Nonseminomatous Germ Cell Tumor, Nos,Leukemia, Nos,Miscellaneous Neoplasm, Nos,Breast Neoplasms,Colorectal Cancer, Nos,Neoplasms,Bone Neoplasms,Non-rhabdomyosarcoma Soft Tissue Sarcoma, Nos,Thyroid Cancer, Nos,Bone Cancer, Nos,Cns Primary Tumor, Nos
PROVIDER: 2394564 | ecrin-mdr-crc |
REPOSITORIES: ECRIN MDR
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Project description:PurposeDetailed cancer treatment information is important to fertility and pregnancy care of female young adult cancer survivors. Accuracy of self-report of treatments that impact fertility and pregnancy is unknown. This study assessed agreement between self-report and medical records on receipt of fertility-threatening treatments.MethodsA national cohort study of female young adult cancer survivors reported cancer treatments via Web-based questionnaires. Primary cancer treatment records were abstracted. Self-reported exposure to fertility-threatening therapies (alkylating chemotherapy, stem cell transplant, pelvic radiation, hysterectomy, and/or oophorectomy) was compared to medical records. Logistic regression models estimated odds ratios (OR) for characteristics associated with inaccurate self-report of fertility-threatening therapies.ResultsThe study included 101 survivors (mean age 28.2, SD 6.3). Lymphoma (33%), breast cancer (26%), and gynecologic cancers (10%) were the most common cancers. Accuracy of self-report was 68% for alkylating chemotherapy and 92-97% for radiation, surgery, and transplant. Significant proportions of survivors who were treated with transplant (8/13, 62%), alkylating chemotherapy (18/43, 42%), pelvic radiation (4/13, 31%), or hysterectomy and/or oophorectomy (3/13, 23%) did not report undergoing these therapies. In adjusted analysis, age ≤ 25 at diagnosis (OR 3.4, 95% CI 1.3-8.7) and recurrence (OR 6.0, 95% CI 1.5-24.4) were related to inaccurate self-report.ConclusionsFemale young adult cancer survivors have limited recall of fertility-threatening cancer treatment exposures. Reproductive health providers and researchers who need this information may require primary medical records or treatment summaries.Implications for cancer survivorsAdditional patient education regarding treatment-related reproductive risks is needed to facilitate patient engagement in survivorship. Obtaining a cancer treatment summary will help survivors communicate their prior treatment exposures to reproductive healthcare providers.
| S-EPMC5501745 | biostudies-literature
Project description:Disparities in care, treatment-related toxicity and health-related quality of life (HRQoL) for adolescents and young adults (AYAs, aged 15-39 years) with cancer are under-addressed partly because of limited collection of patient-reported outcomes (PROs) in cancer clinical trials (CCTs). The AYA years include key developmental milestones distinct from younger and older patients, and cancer interrupts attainment of critical life goals. Lack of consensus on a standardized approach to assess HRQoL and treatment-related toxicity in AYA CCTs has limited the ability to improve patient outcomes. The National Cancer Institute's Clinical Trials Network AYA PRO Task Force was assembled to reach consensus on a core set of PROs and foster its integration into AYA CCTs. Eight key considerations for selecting the core PRO AYA battery components were identified: relevance to AYAs; importance of constructs across the age continuum; prioritization of validated measures; availability of measures without licensing fees; availability in multiple languages; applicability to different cancer types and treatments; ability to measure different HRQoL domains and toxicities; and minimized burden on patients and sites. The Task Force used a modified Delphi approach to identify key components of the PRO battery. The Patient-Reported Outcomes Measurement Information System (PROMIS) and the PRO Common Terminology Criteria for Adverse Events Measurement System met all criteria and were selected to assess HRQoL and treatment toxicity, respectively. Investigators are rapidly incorporating the recommendations of the Task Force into AYA trials. Inclusion of a standardized assessment of HRQoL and treatment toxicities in AYA CCTs is a vital first step to develop interventions to improve health outcomes for AYAs diagnosed with cancer.
| S-EPMC9830479 | biostudies-literature
Project description:OBJECTIVE:Cancer-related cognitive impairment (CRCI) among adolescent and young adult (AYA) cancer patients with noncentral nervous system (CNS) cancers has not been well studied. In this study, we aimed to describe CRCI-associated trends and characteristics among AYA cancer patients. METHODS:In a longitudinal cohort of AYA cancer patients without CNS disease, CRCI was evaluated over 1?year using the Functional Assessment of Cancer Therapy-Cognitive Function Instrument, a self-reported cognitive outcome measure. CRCI prevalence was quantified using the previously established minimal clinically important difference. CRCI-associated longitudinal trends and factors were evaluated with mixed-effects model analysis. RESULTS:Ninety-one patients (mean age = 28.4?±?6.7?years) were included. Approximately one-third (34.1%) experienced CRCI at least once during the study follow-up. Female gender (P = .02), Indian ethnicity (P?<?.01), current smokers (P?<?.01), anxiety/depressive symptoms (P?<?.01) and fatigue (P?<?.01) were found to be associated with poorer cognitive function among AYAs. CONCLUSIONS:Although AYA cancer patients were relatively young and without CNS disease involvement, a significant proportion of them experienced clinically important decline in cognitive function. With improved understanding of this subject, effective strategies can be formulated to promote awareness of CRCI and mitigate its negative effects among AYA cancer patients.
| S-EPMC7497100 | biostudies-literature
Project description:BackgroundTailored care management requires effectively segmenting heterogeneous populations into actionable subgroups. Using patient reported data may help identify groups with care needs not revealed in traditional clinical data.MethodsWe conducted retrospective segmentation analyses of 9,617 Kaiser Permanente Colorado members age 65 or older at risk for high utilization due to advanced illness and geriatric issues who had completed a Medicare Health Risk Assessment (HRA) between 2014 and 2017. We separately applied clustering methods and latent class analyses (LCA) to HRA variables to identify groups of individuals with actionable profiles that may inform care management. HRA variables reflected self-reported quality of life, mood, activities of daily living (ADL), urinary incontinence, falls, living situation, isolation, financial constraints, and advance directives. We described groups by demographic, utilization, and clinical characteristics.ResultsCluster analyses produced a 14-cluster solution and LCA produced an 8-class solution reflecting groups with identifiable care needs. Example groups included: frail individuals with memory impairment less likely to live independently, those with poor physical and mental well-being and ADL limitations, those with ADL limitations but good mental and physical well-being, and those with few health or other limitations differentiated by age, presence or absence of a documented advance directive, and tobacco use.ConclusionsSegmenting populations with complex care needs into meaningful subgroups can inform tailored care management. We found groups produced through cluster methods to be more intuitive, but both methods produced actionable information. Applying these methods to patient-reported data may make care more efficient and patient-centered.
| S-EPMC6484372 | biostudies-literature
Project description:ObjectivesThere is a paucity of research on the impact of cancer treatment on the health-related quality of life (HRQOL) of adolescent and young adult (AYA) patients with cancer. Patient-reported outcomes (PROs) are self-report measures used to assess HRQOL and symptom burden. The extent to which PROs have been included in trials that include common AYA cancer types has not been previously assessed.MethodsTherapeutic phase 3 trials among common AYA cancer types (Hodgkin lymphoma, non-Hodgkin lymphoma, acute lymphoblastic leukemia, sarcomas, and germ cell tumors) initiated between 2007 and 2020 were identified on ClinicalTrials.gov. The proportions and characteristics of trials including a PRO endpoint were assessed. For comparison with an older population, the proportion of breast and colorectal therapeutic phase 3 trials including PRO endpoints were assessed.ResultsEighty-seven studies met the inclusion criteria. Overall, 20.7% of therapeutic phase 3 AYA trials included a PRO endpoint, and only one trial published PRO data. Germ cell tumors (42.9%) and non-Hodgkin lymphoma (40%) trials had the highest proportions of PRO inclusion. The European Organization for Research and Treatment of Cancer generic, cancer-specific quality of life questionnaire was the most commonly used PRO measure; nevertheless, the measures used varied within and between cancer types. The proportion of trials including a PRO endpoint did not change significantly between 2007 to 2013 and 2014 to 2020 (18.6% vs 22.7%, P=.79).ConclusionsFew therapeutic phase 3 AYA cancer trials include PRO endpoints, fewer publish PRO data, and there is no homogeneity in the measures administered. Therapeutic trials represent an underused opportunity to capture PRO data in the AYA population with the goal of improving HRQOL outcomes.
| S-EPMC8630401 | biostudies-literature
Project description:ObjectivesTo compare between accelerometry (MVPA-A) and self-reported activity (MVPA-SR) in activity-maintenance (Keep Active Minnesota; KAM) and weight loss-maintenance (Keep It Off; KIO) trials.MethodsLinear regression estimated moderation of study, treatment, or time on MVPA-A and MVPA-SR associations.ResultsMVPA-A was similar between studies (KAM 119 minutes, KIO 112 minutes, p = .555), whereas MVPA-SR differed significantly (KAM 350 minutes, KIO 87 minutes, p < .0001). Only study moderated correlation between MVPA-A and MVPA-SR. MVPA-SR better predicted MVPA-A in KIO relative to KAM (p = .023).ConclusionsResults suggest that self-presentation bias may influence validity of self-report in intervention studies with activity as a primary outcome. Researchers should select self-report to assess activity dimensions that objective measures capture poorly.
| S-EPMC4104794 | biostudies-literature
Project description:No epidemiological information about truncal acne is available. This study assessed the self-reported impact of truncal acne in adolescents and young adults, using an internet survey in France in 1,001 adolescents and young adults with truncal acne. Participants' mean age was 18.6 ± 4.3 years, 75.7% were females, 52.9% reported severe and 16.0% very severe truncal acne; 90.0% of participants with truncal acne also reported past or ongoing facial acne. Stress (46.3%), a diet high in lipids (33.2%), and sleeplessness (27.0%) were considered to be triggers of truncal acne; 44.7% consulted at least 1 healthcare professional and 28.1% searched the internet or social network for information about truncal acne. Of subjects with truncal acne, 68.4% thought constantly about their condition. Overall, 79.9% of the participants with severe acne vs 41.8% with mild or moderate acne: 41.8% thought about their acne all the time (p < 0.0001). Truncal acne heavily or very heavily impacted quality of life of 38.7% of participants. It impacted females significantly more than males (p < 0.0001). Significantly (p < 0.001) more females than males reported facial acne. A significant (p = 0.0067) association was observed between the severities of facial and truncal acne. The self-perceived impact of truncal acne in adolescents and young adults highlights the need for information as well as reinforced medical and psychological care.
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Project description:IntroductionThe Fontan procedure is a palliative operation for patients with single functional ventricles, arising from a heterogeneous group of heart defects. There is a considerable gap in evidence regarding the self-reported physical and mental health of these patients surviving to adulthood.Methods and resultsWe administered the PROMIS® Global Short Form (v 1.2) to Fontan patients during their scheduled clinic visits during 2017-2018. The raw PROMIS scores were subsequently converted to standardized T-scores, where the mean performance was 50 for the general population. We used Cronbach's alpha to assess reliability, with >0.8 considered good. A total of 42 patients were included. The median age was 30 (IQR: 24-34) years and 59% (95% CI: 43-74%) were female. The median time from birth to operation was 4.5 (IQR: 3-8) years, with 55% having an extracardiac Fontan. The questionnaire had good internal reliability with an alpha of 0.87. Seventy-one percent of respondents rated their overall health as "excellent" or "good". The mean T-score for physical health was 46.6, lower than the age-group mean (51.6, p < 0.001). The mean T-score for mental health was 53.3, higher than the age-group mean (48.5, p < 0.001). T-scores showed strong correlation with each other (r = 0.7) and weak correlation with age and time from procedure. There was no association of T-score with diagnosis or operation type.ConclusionsAdult Fontan patients report better mental health despite worse reporting physical health compared with the age group means. Patient-reported measures can provide clinically meaningful insights about the care of patients with complex congenital heart disease.
| S-EPMC9323562 | biostudies-literature
Project description:ImportanceHealth literacy has been shown to play an important role in transitions of care in adult populations, with low health literacy associated with adverse health outcomes. The role of health literacy in the transition from pediatric to adult care has been less well studied. Among adolescents and young adults with spina bifida, high rates of unsuccessful transition have been shown, but how patient health literacy affects transition readiness remains unknown.ObjectiveTo determine whether health literacy is associated with transition readiness in adolescents and young adults with spina bifida.Design, setting, and participantsThis cross-sectional study involved collection of patient-reported questionnaires between June 2019 and March 2020 at a multidisciplinary spina bifida center at a single, free-standing children's hospital. Patient demographic and clinical characteristics were obtained from medical record review. Patients were aged 12 years or older with a diagnosis of spina bifida (myelomeningocele and nonmyelomeningocele) whose primary language was English or Spanish. Data analysis was performed from October 2020 to March 2021.ExposuresHealth literacy as assessed by the Brief Health Literacy Screening Tool.Main outcomes and measuresThe primary outcome was total Transition Readiness Assessment Questionnaire (TRAQ) score, normalized into units of SD. Nested, multivariable linear regression models assessed the association between health literacy and TRAQ scores.ResultsThe TRAQ and Brief Health Literacy Screening Tool were completed by 200 individuals (median [range] age, 17.0 [12.0-31.0] years; 104 female participants [52.0%]). Most of the patients were younger than 18 years (110 participants [55.0%]) and White (136 participants [68.0%]) and had myelomeningocele (125 participants [62.5%]). The mean (SD) TRAQ score was 3.3 (1.1). Sixty-six participants (33.0%) reported inadequate health literacy, 60 participants (30.0%) reported marginal health literacy, and 74 participants (37.0%) reported adequate health literacy. In univariable analysis, health literacy, age, type of spina bifida, level of education, self-administration vs completion of the questionnaires with assistance, ambulatory status, and urinary incontinence were associated with total TRAQ score. In all nested, sequentially adjusted, multivariable models, higher health literacy remained a significant, stepwise, independent variable associated with higher TRAQ score. In the fully adjusted model, having adequate compared with inadequate health literacy was associated with an increase in normalized TRAQ score of 0.49 SD (95% CI, 0.19-0.79).Conclusions and relevancePatient-reported transition readiness is associated with health literacy, even after adjustment for education level and other demographic and clinical factors. Developing and implementing health literacy-sensitive care programs during the transition process may improve patient transition readiness.
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Project description:Long-term engagement with mobile health (mHealth) apps can provide critical data for improving empirical models for real-time health behaviors. To learn how to improve and maintain mHealth engagement, micro-randomized trials (MRTs) can be used to optimize different engagement strategies. In MRTs, participants are sequentially randomized, often hundreds or thousands of times, to different engagement strategies or treatments. The data gathered are then used to decide which treatment is optimal in which context. In this paper, we discuss an example MRT for youth with cancer, where we randomize different engagement strategies to improve self-reports on factors related to medication adherence. MRTs, moreover, can go beyond improving engagement, and we reference other MRTs to address substance abuse, sedentary behavior, and so on.
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