Dataset Information

Recruiting Adolescent and Young Adult Cancer Survivors for Patient-Reported Outcome Research: Experiences and Sample Characteristics of the SURVAYA Study.

ABSTRACT:

Background

Participation of Adolescents and Young Adults with cancer (AYAs: 18-39 years at time of diagnosis) in patient-reported outcome studies is warranted given the limited knowledge of (long-term) physical and psychosocial health outcomes. We examined the representativeness of AYAs participating in the study, to observe the impact of various invitation methods on response rates and reasons for non-participation.

Methods

A population-based, cross-sectional cohort study was performed among long-term (5-20 years) AYA cancer survivors. All participants were invited using various methods to fill in a questionnaire on their health outcomes, including enclosing a paper version of the questionnaire, and sending a reminder. Those who did not respond received a postcard in which they were asked to provide a reason for non-participation.

Results

In total, 4.010 AYAs (response 36%) participated. Females, AYAs with a higher socio-economic status (SES), diagnosed more than 10 years ago, diagnosed with a central nervous system tumor, sarcoma, a lymphoid malignancy, stage III, or treated with systemic chemotherapy were more likely to participate. Including a paper questionnaire increased the response rate by 5% and sending a reminder by 13%. AYAs who did not participate were either not interested (47%) or did want to be reminded of their cancer (31%).

Conclusions

Study participation was significantly lower among specific subgroups of AYA cancer survivors. Higher response rates were achieved when a paper questionnaire was included, and reminders were sent. To increase representativeness of future AYA study samples, recruitment strategies could focus on integrating patient-reported outcomes in clinical practice and involving AYA patients to promote participation in research.

SUBMITTER: Vlooswijk C

PROVIDER: S-EPMC9406992 | biostudies-literature | 2022 Jul

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Recruiting Adolescent and Young Adult Cancer Survivors for Patient-Reported Outcome Research: Experiences and Sample Characteristics of the SURVAYA Study.

Vlooswijk Carla C Poll-Franse Lonneke V van de LVV Janssen Silvie H M SHM Derksen Esther E Reuvers Milou J P MJP Bijlsma Rhodé R Kaal Suzanne E J SEJ Kerst Jan Martijn JM Tromp Jacqueline M JM Bos Monique E M M MEMM Hulle Tom van der TV Lalisang Roy I RI Nuver Janine J Kouwenhoven Mathilde C M MCM van der Graaf Winette T A WTA Husson Olga O

Current oncology (Toronto, Ont.) 20220729 8

<h4>Background</h4>Participation of Adolescents and Young Adults with cancer (AYAs: 18-39 years at time of diagnosis) in patient-reported outcome studies is warranted given the limited knowledge of (long-term) physical and psychosocial health outcomes. We examined the representativeness of AYAs participating in the study, to observe the impact of various invitation methods on response rates and reasons for non-participation.<h4>Methods</h4>A population-based, cross-sectional cohort study was per ...[more]

PMID: 36005166

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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:(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: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.

Dataset Information

Recruiting Adolescent and Young Adult Cancer Survivors for Patient-Reported Outcome Research: Experiences and Sample Characteristics of the SURVAYA Study.

Background

Methods

Results

Conclusions

Publications

Recruiting Adolescent and Young Adult Cancer Survivors for Patient-Reported Outcome Research: Experiences and Sample Characteristics of the SURVAYA Study.

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