Young adult cancer survivors' preferences for supportive interventions.
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ABSTRACT:
SUBMITTER: Oswald LB
PROVIDER: S-EPMC8284553 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:Adolescents and young adults (AYAs) represent an overlooked population in cancer survivorship care. Identifying the needs of AYAs can guide the development of tailored programs for this population. We conducted a cross-sectional descriptive analysis to identify biopsychosocial factors associated with AYA post-treatment supportive care needs and unmet needs using data obtained from the Experiences of Cancer Patients in Transitions Study of the Canadian Partnership Against Cancer, in collaboration with cancer agencies in the 10 Canadian provinces. The analysis focused on data from n = 530 AYAs between the ages of 18 and 34 who had undergone treatment within the past 5 years. Respondents reported a median of two moderate to big (MTB) physical needs (out of 9) and one unmet physical need, two MTB emotional needs (out of 6) with two unmet MTB emotional needs, and one (out of 5) practical need reported and one unmet MTB practical need. We found some common associations across supportive care domains. Income (lower) and more complex treatment were associated with high needs and unmet needs across the three domains. Respondents with a family doctor who was "very involved" in their cancer care had a lower number of unmet physical and emotional needs. Identifying those at risk of supportive care needs and developing tailored pathways in which they are proactively connected with tailored and appropriate resources and programs may help to reduce the number of unmet needs and improve cancer survivors' quality of life.
| S-EPMC8232806 | biostudies-literature
Project description: Not available
| S-EPMC6872979 | biostudies-literature
Project description:BackgroundLittle is currently known about how best to promote healthy lifestyle choices among teenage and young adult (TYA) cancer survivors. Such data gathered from a patient-centered perspective are instrumental for the development of health behavior change interventions for young people with cancer.ObjectiveThis study aimed to explore the lifestyle information needs of TYA cancer survivors and their preferences regarding lifestyle information and intervention delivery. Lifestyle behaviors of interest were physical activity, diet, smoking, alcohol consumption, and sun safety.MethodsA total of 13 TYA cancer survivors (mean age, 22.9 years) participated in 10 individual interviews and 1 focus group (n = 3). Each interview and focus group followed the same semistructured interview guide, which was designed to explore young peoples' motivation behind leading a healthy lifestyle, their past experience of searching for lifestyle information, and their preferences relating to lifestyle information delivery.ResultsThree core themes emerged: cancer as a catalyst to lifestyle behavior change, factors influencing health behavior change, and health behavior information preferences. Social support emerged as facilitator of both health behavior change and self-efficacy.ConclusionYoung people with cancer want age-appropriate lifestyle information on a range of topics delivered in multiple formats at various time points.Implications for practiceHealth professionals working with TYA cancer survivors should address young peoples' lifestyle information needs throughout the cancer care pathway and support young people to foster the confidence to make, and sustain, positive lifestyle behavior changes.
| S-EPMC6259678 | biostudies-literature
Project description:Purpose: Effective communication between young adult (YA; aged 18-39 years) cancer survivors and their health care providers is critical for managing post-treatment symptoms. Yet, little is known about YAs' and providers' preferences for and barriers to symptom communication, variables important for developing interventions to improve and optimize YA-provider communication. Methods: YA survivors (N = 21) and oncology providers (N = 11) rank ordered their preferred methods for symptom communication and top communication barriers. Interviews were conducted to obtain qualitative data (i.e., preferred methods for, barriers, and suggestions to improve symptom communication). Interviews were transcribed, and thematic qualitative analysis was used. Results: Sixty-two percent of YAs preferred communicating using the electronic messaging system affiliated with the medical record (MyChart), whereas providers (100%) preferred communicating during in-person clinic visits. Qualitative data from YAs pointed to benefits of MyChart, including ease of use and rapid responses. Providers acknowledged that, although efficient, high message volumes and expectations for rapid responses were barriers to MyChart. Providers described benefits of in-person visits, including visually assessing patients' concerns, providing immediate support, and more safely managing symptoms. Lack of time (48%) was YAs' top communication barrier, whereas providers endorsed patients not bringing up symptoms (64%). Qualitative data reflected patient-level (e.g., embarrassment/discomfort, lack of skills) and provider-level (e.g., forgetting to ask about a symptom) barriers. YAs and providers offered strategies to improve communication. Conclusion: Survivor- and provider-level communication interventions that account for YAs' and providers' differing communication preferences and directly address communication barriers unique to survivors' developmental stage may be necessary to improve symptom communication.
| S-EPMC9595618 | biostudies-literature
Project description:PurposeExercise and physical activity (hereafter, collectively referred to as PA) preferences and benefits are becoming increasingly well characterised in cancer survivors, yet evidence from adolescent and young adult cancer survivors (AYAs) is scant. We describe the overall PA behaviour and support preferences of AYAs and explore subgroup differences to inform AYA-specific research and support.MethodsAYAs diagnosed with cancer between the ages of 18-39 years, irrespective of current age, were approached in clinic at a large cancer centre for this cross-sectional survey that assessed self-reported demographics, medical history, PA behaviour and PA support preferences.ResultsA total of 318 AYAs completed the survey. Approximately 40% of AYAs were not meeting PA guidelines, and only 5% reported engagement with cancer PA support services. Most AYAs wanted PA support (78%), to increase PA levels (70%), and were interested in engaging in PA interventions that were individually supervised (82%), home-based (79%), performed ≥ 3 days/week (75%) and for ≥ 30 minutes/session (78%), offered following treatment (63%), restricted by age (63%), and involved strength (83%), walking (78%), and flexibility (75%) exercise. PA preferences most often differed according to sex, treatment status, current PA behaviour and PA support setting.ConclusionAYAs have a great capacity and interest in specific types of PA support. Poor engagement with existing PA support services highlights the need for further AYA-specific research. Better understanding of AYAs' unique PA behaviour and support preferences can inform the development of urgently needed research and support services for this understudied and rapidly growing population.
| S-EPMC7787126 | biostudies-literature
Project description:BackgroundYoung adult cancer survivors have significant work-related challenges, including interruptions to education and employment milestones, which may affect work-related goals (WRGs). The study purpose was to explore posttreatment perspectives of WRGs in a sample of young adult hematologic cancer survivors.MethodsThis qualitative descriptive study used social media to recruit eligible cancer survivors (young adults working or in school at the time of cancer diagnosis). Data were collected through telephone semi-structured interviews and analyzed using directed content analysis, followed by thematic content analysis to identify themes.FindingsThe sample (N = 40) were mostly female (63.5%), White (75%), and diagnosed with Hodgkin lymphoma (57.5%); most worked in professional (40%) or health care (23%) roles. The overarching theme, "Survivors' Dilemma," highlights a changed perspective on work-related fulfillment and financial obligations, capturing survivors' decision-making process regarding work. Three subthemes illustrated questions that participants contemplated as they examined how their WRGs had changed: (a) Self-identity: Do I want to do this work? (b) Perceived health and work ability: Can I do this work? and (c) Financial toxicity: Can I afford to/not to do this work?Conclusions/application to practiceParticipants experienced a state of dilemma around their WRGs, weighing areas around self-identity, perceived health and work ability, and financial toxicity. Findings suggest occupational health nurses should be aware of challenges surrounding WRGs, including how goals may change following a cancer diagnosis and treatment, and the potential stressors involved in the Survivors' Dilemma. Occupational health nurses should assess for these issues and refer young survivors to employee and financial assistance programs, as necessary.
| S-EPMC8599614 | biostudies-literature
Project description:ImportanceCancer diagnosis and treatment may adversely affect reproductive outcomes among female cancer survivors.ObjectiveTo compare the birth outcomes of adolescent and young adult cancer survivors (AYA [diagnosed at ages 15-39 years]) with those of women without a cancer diagnosis.Design, setting, and participantsThe North Carolina Central Cancer Registry (CCR) was used to identify female AYA cancer survivors diagnosed from January 2000 to December 2013; CCR records were linked to statewide birth certificate files from January 2000 to December 2014 to identify postdiagnosis live births to AYA survivors (n = 2598). A comparison cohort of births to women without a recorded cancer diagnosis was randomly selected from birth certificate files (n = 12 990) with frequency matching on maternal age and year of delivery.Main outcomes and measuresPrevalence of preterm birth, low birth weight, small-for-gestational-age births, cesarean delivery, and low Apgar score.ResultsOverall, 2598 births to AYA cancer survivors (mean [SD] maternal age, 31 [5] years) were included. Births to AYA cancer survivors had a significantly increased prevalence of preterm birth (prevalence ratio [PR], 1.52; 95% CI, 1.34-1.71), low birth weight (PR, 1.59; 95% CI, 1.38-1.83), and cesarean delivery (PR, 1.08; 95% CI, 1.01-1.14) relative to the comparison cohort of 1299. The higher prevalence of these outcomes was most concentrated among births to women diagnosed during pregnancy. Other factors associated with preterm birth and low birth weight included treatment with chemotherapy and a diagnosis of breast cancer, non-Hodgkin lymphoma, or gynecologic cancers. The prevalence of small-for-gestational-age births and low Apgar score (<7) did not differ significantly between groups.Conclusions and relevanceLive births to AYA cancer survivors may have an increased risk of preterm birth and low birth weight, suggesting that additional surveillance of pregnancies in this population is warranted. Our findings may inform the reproductive counseling of female AYA cancer survivors.
| S-EPMC5824217 | biostudies-literature
Project description:This pilot study aimed to accomplish 3 distinct but related goals. First, we described the structural phenotype of uterine/endometrial injury after alkylating chemotherapy sonographically and histologically. Second, we investigated the molecular impact of alkylating chemotherapy exposure on messenger RNA expression and epigenetic changes in endometrial biopsy (EMB) tissue homogenates. Third, we investigated the feasibility of performing ultrasonographic and EMB-based assessments in reproductive-age cancer survivors. Because of limited information available in this area of inquiry, this approach is exploratory and should prove to be hypothesis-generating. The main outcome measures of this study included endometrial thickness (EMT) and uterine volume on transvaginal ultrasound. Endometrial histology, DNA methylation, and RNA-seq on EMB samples, and pain scale assessment before and after EMB.
2023-07-01 | GSE235951 | GEO
Project description:Genome wide DNA methylation profiling of samples from adult survivors of childhood and young adult cancer, using the Illumina Infinium Human MethylationEPIC Beadchip arrays. Samples included 32 samples, all sampled at least 10 years after diagnosis . Specific therapies and duration between sampling and diagnosis varied.
2020-12-31 | GSE162559 | GEO
Project description:Objective To assess recall bias by evaluating how well female cancer survivors remember details regarding their cancer diagnosis, treatment, and fertility preservation (FP) counseling. Oncofertility literature cites recall bias as a pitfall of retrospective surveys, but limited data exist to quantify this bias. Design Retrospective secondary analysis of cross-sectional survey data. Setting Single academic medical center. Patient(s) Female oncology patients of reproductive age, 18–44 years old, at least 6 months past their last chemotherapy treatment. Intervention(s) Not applicable. Main Outcome Measure(s) Recall of details surrounding cancer diagnosis and chemotherapy regimens, recall of FP counseling and ovarian reserve testing, and rates of chart-documented FP counseling. Result(s) In total, 117 patients completed the survey, with 112 verified via chart review. When asked to report the chemotherapy regimen, 57% (64 of the 112) marked “I don’t know/prefer not to say.” Regarding FP, 80% (90 of the 112) denied being offered counseling. Of the 37 (33%) who had documented FP conversations, 13 (35%) did not recall mention of fertility. Only 2 of 8 patients with ovarian reserve testing recalled this being performed at their initial visit. Multivariable logistic regression revealed older age was significantly associated with not being offered FP (odds ratio [OR] 0.87). Conclusion(s) Our results confirm that the accuracy of oncology patients’ reporting is limited by a poor recall, particularly regarding their specific chemotherapy regimen. More than 1 in 3 patients documented to have been offered FP counseling do not recall this discussion. Importantly, only one-third of cancer survivors had chart-documented FP counseling. Increased efforts are needed to ensure adequate follow-up beyond the initial visit.
| S-EPMC10028472 | biostudies-literature