Recruitment and follow-up of adolescent and young adult cancer survivors: the AYA HOPE Study

Harlan, Linda C.; Lynch, Charles F.; Keegan, Theresa H.M.; Hamilton, Ann S.; Wu, Xiao‐Cheng; Kato, Ikuko; West, Michele; Cress, Rosemary D.; Schwartz, Stephen M.; Smith, Ashley Wilder; Deapen, Dennis; Stringer, Sonja; Potosky, Arnold L.

doi:10.1007/s11764-011-0173-y

Cited by 145 publications

(182 citation statements)

References 14 publications

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“…The high enrollment rate of YAs who were in early treatment confirms their willingness to participate in PA studies, which is consistent with earlier studies indicating that YA survivors are interested in learning about PA. 18,19 The study completion rate of 71% is within range of PA studies with older adult cancer patients during treatment 3 and somewhat lower than other longitudinal studies with YA survivors of AYA cancers. [19][20][21] As a measure of functional capacity, the 6MWT was easy and safe for the YAs to complete. Their walk distances showed a wide range of exercise capacity-as low as 50% and as high as 90%-when compared to healthy persons of comparable age, gender, height, and weight.…”

Section: Discussionmentioning

confidence: 99%

A Feasibility Study to Measure Physical Activity, Fatigue, Sleep–Wake Disturbances, and Depression in Young Adults During Chemotherapy

Erickson

Adelstein

Letzkus

2014

Journal of Adolescent and Young Adult Oncology

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Little is known about the physical activity (PA) of young adults (YAs) during cancer therapy. In this feasibility study, 14 YAs (20-34 years old) completed a six-minute walk test, recorded their steps per day for one week, and answered weekly self-reports about physical activity, fatigue, sleep-wake disturbances, and depression during one cycle of chemotherapy. Findings suggest YAs are willing to complete a PA study during chemotherapy and have variable sleep and activity schedules. Their symptoms varied in severity, with highest scores for fatigue. Studies to improve PA in YAs during chemotherapy are warranted to manage short-and long-term treatment effects.Keywords: cancer care continuum, chemotherapy, exercise, physical activity, supportive care P hysical activity (PA) during treatment for cancer is an evidence-based intervention recommended to relieve disease-and treatment-related symptoms such as fatigue and sleep disturbances.1-3 Maintaining PA during cancer treatment may also mitigate the long-term negative effects of inactivity, such as deconditioning and weight gain, that often occur during and after the cancer treatment period.4,5 Staying physically active may also promote better disease outcomes for patients at high risk for developing second cancers.6 Many young adults (YAs) with cancer, however, become sedentary during their months of chemotherapy due to common physical and psychosocial symptoms, such as fatigue and depressed mood. Frequent clinic and hospital visits disrupt daily activity and sleep routines, making it difficult to maintain previously established habits and schedules.PA research to date has focused mainly on outcomes in adults with common cancers, especially following the completion of therapy, and little is known about PA in YAs with cancer. Emerging evidence suggests that adolescent cancer survivors experience significant declines in PA during treatment that may last past completion of treatment. [7][8][9] Studies are needed to describe PA in YAs during active treatment and to test PA interventions for YAs receiving chemotherapy.The aims of this study were to: (1) test the feasibility of procedures to measure four symptoms (fatigue, sleep disturbance, wake disturbance, and emotional disturbancedepression) and PA in YAs; and (2) gather feasibility data related to functional status, symptom severity, and PA over the course of one cycle of chemotherapy. These data will inform the design of a trial to test an age-specific intervention to improve symptom management, PA, and quality of life outcomes for YAs who may become long-term cancer survivors. MethodsData collection began on the first day of a chemotherapy cycle and lasted 2 weeks. This feasibility study was conducted at the University of Virginia Medical Center between November 2010 and May 2012. ParticipantsInclusion criteria included patients who: (1) were diagnosed with any cancer between the ages of 18 and 39; (2) were receiving chemotherapy on a cycle every 3-4 weeks; (3) were in their first through sixth month of chemothera...

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Section: Discussionmentioning

confidence: 99%

A Feasibility Study to Measure Physical Activity, Fatigue, Sleep–Wake Disturbances, and Depression in Young Adults During Chemotherapy

Erickson

Adelstein

Letzkus

2014

Journal of Adolescent and Young Adult Oncology

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“…Lastly, several psychosocial factors playing a role in clinical trial enrollment may also increase or decrease adherence to clinical trials among adolescents. 54 Some of the factors may include: (1) openness and frequency of communication between the adolescent, parents, and providers; (2) the adolescent' s role in making decisions at different aspects of treatment; (3) the adolescent' s knowledge of treatment and treatment-related adverse effects; and (4) 64 In addition to future research needs, there are several practice-based and applied considerations that can be implemented to improve enrollment and adherence among adolescents. Recognizing and respecting the need for autonomy versus dependency in adolescent medical decision-making is important for both parents and providers.…”

Section: Psychosocial Barriers and Facilitators Affecting Adherence Tmentioning

confidence: 99%

Psychosocial Barriers and Facilitators to Clinical Trial Enrollment and Adherence for Adolescents With Cancer

et al. 2014

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have not experienced the same survival gains as children and older adults diagnosed with cancer. Poor clinical trial enrollment and adherence rates among adolescents may account for some of this disparity. Although biological, regulatory, systemic, and practice-related challenges to clinical trial enrollment and adherence have been examined, studies of psychosocial factors, which can serve as barriers or facilitators to enrollment and adherence, are limited. To bring attention to these psychological factors, we reviewed existing literature on psychosocial barriers and facilitators that can affect an adolescent' s decision to enroll and adhere to a clinical trial. We also provide potential strategies to address psychosocial factors affecting clinical trial accrual and adherence. Pediatrics

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“…2,5,11,12 The AYA Health Outcomes and Patient Experience (HOPE) Study, which has followed 524 AYA patients, reported that only 7% of respondents had participated in a clinical trial. 13 2 Figure 1 illustrates that overall survival trends are improving for malignant cancers among all age groups in AYAs. However, for certain cancer types, this is not the case.…”

Section: Resultsmentioning

confidence: 99%

“…The AYA HOPE Study revealed the most common reason that AYAs did not participate in clinical trials was the fear that the medications that would be given to them were not sufficiently tested. 13 Certainly, explaining what is known about the medication being studied including potential side effects may help alleviate these fears and lead to improved enrollment. More importantly, providers should demystify the concept of clinical trials with patients, and convey that these trials are our "gold standard" of research in medicine.…”

Section: Discussionmentioning

confidence: 99%

“…Indeed, 62% of respondents in the AYA HOPE Study reported that they did not know whether clinical trials were available for their cancer type. 13 NCI surveys of primary care providers revealed that 98% did not discuss clinical trials with patients of any age and 37% were not aware that clinical trials existed for their patients. 23 Unpublished data from Gordon et al's survey of primary care providers demonstrated that 78% of providers thought NCI-sponsored pediatric trials ended at age 21.…”

Section: Dovepressmentioning

confidence: 99%

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Clinical trial enrollment of adolescent and young adult patients with cancer: a systematic review of the literature and proposed solutions

Friend¹,

Baweja²,

Schiller³

et al. 2017

COAYA

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Abstract:Although there has been significant progress in the survival of children and older adults with cancer in the last few decades, this has not been the case for adolescent and young adults (AYAs). Although there are multiple reasons why outcomes for AYAs have not improved over time, it is evident from studies that AYAs fare better when enrolled in clinical trials, yet they are much less likely to participate in trials when compared with children and older adults. The goal of this review is to understand the trends in clinical trial enrollment of AYA patients over time, recognize facilitators and barriers to enrollment, and evaluate methods that have been utilized in order to improve clinical trial enrollment for this group of patients. A systematic review of the literature was performed to search for articles related to AYA oncology and clinical trials. The articles that met all inclusion criteria were then subject to full-text review, which yielded 17 articles that used quantitative, qualitative, or mixed methods. The articles reviewed demonstrated that for AYA patients, survival and clinical trial enrollment have shown some improvement over time, yet participation in clinical trials is still relatively poor, particularly for older patients within this group. Major barriers to enrollment in clinical trials include limited access and availability of trials, as well as patient knowledge. We have introduced the 4 Ps Conceptual "Onion Skin" Model, which includes patient, partners, providers, and policies, with the goal of reducing barriers to trial enrollment. Interventions utilizing this model include the establishment of more AYA centers, increased collaboration among cooperative groups with the goal of creating more AYA-specific trials, and educating patients and providers about the benefits of participating in clinical trials. Further studies are needed to understand which interventions would be most successful in encouraging AYA patients to enroll in clinical trials.

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Recruitment and follow-up of adolescent and young adult cancer survivors: the AYA HOPE Study

Cited by 145 publications

References 14 publications

A Feasibility Study to Measure Physical Activity, Fatigue, Sleep–Wake Disturbances, and Depression in Young Adults During Chemotherapy

A Feasibility Study to Measure Physical Activity, Fatigue, Sleep–Wake Disturbances, and Depression in Young Adults During Chemotherapy

Psychosocial Barriers and Facilitators to Clinical Trial Enrollment and Adherence for Adolescents With Cancer

Clinical trial enrollment of adolescent and young adult patients with cancer: a systematic review of the literature and proposed solutions

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