Unmet needs among adolescent cancer patients: A pilot study

Palmer, Susan; Mitchell, Anne; Thompson, Kate; Sexton, Maree

doi:10.1017/s1478951507070198

Cited by 100 publications

(119 citation statements)

References 12 publications

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“…For the latter group, information should be provided directly to patients in a developmentally appropriate manner, allowing time to process the information and deliver information in a caring manner. 219 AYA patients prefer that information about their cancer and cancer-related risks be communicated to them in a manner that is positive, respectful, and nonjudgmental. 192 In a pilot project aimed at eliciting the views of AYA patients with cancer, humor, closely followed by expertise and knowledge, was identified as the most important characteristic that patients would like to see in their nurses.…”

Section: Relationshipsmentioning

confidence: 99%

Adolescent and Young Adult Oncology, Version 2.2018, NCCN Clinical Practice Guidelines in Oncology

Coccia¹,

Pappo²,

Beaupin³

et al. 2018

J Natl Compr Canc Netw

239

194

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Section: Relationshipsmentioning

confidence: 99%

Adolescent and Young Adult Oncology, Version 2.2018, NCCN Clinical Practice Guidelines in Oncology

Coccia¹,

Pappo²,

Beaupin³

et al. 2018

J Natl Compr Canc Netw

239

194

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“…As a result, adolescents are less likely to have access to fp services and supports. Moreover, even when fp options are raised with adolescents, survivors often report dissatisfaction with those conversations, citing a lack of adequate information and insufficient time and importance given to fp discussions 17,18 . Those findings raise additional concerns about the content and quality of such discussions.…”

Section: What Is the Current Gap In Practice Related To Fertility Prementioning

confidence: 99%

Listening through Narratives: Using a Narrative Approach When Discussing Fertility Preservation Options with Young Cancer Patients

Roher

Gibson

et al. 2017

Current Oncology

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Despite clinical practice guideline recommendations mandating that fertility preservation be discussed with young cancer patients, many providers fail to initiate such discussions with adolescents. Researchers and clinicians often focus on system-level changes to improve access to fertility preservation for adolescents and young adults in Canada. However, little of the available information considers the way in which health care providers approach those discussions.Research has shown that, even when fertility preservation options are broached with adolescents, survivors often report dissatisfaction with those conversations, thus raising additional concerns about their content and quality. Here, we consider how a narrative approach-and the Frank narrative typology in particular-could improve the quality of such conversations by helping providers to more accurately and thoughtfully respond to the needs of adolescent patients when discussing the possibility of fertility preservation. Based on findings from a qualitative research project, we provide concrete suggestions for how to more sensitively approach fertility preservation conversations with male adolescent cancer patients and survivors.

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“…This leads to many providers focusing their discussions on the parents, yet studies have shown that patients appreciated when they were given the facts directly and the opportunity to make decisions. 32 Of course success in understanding the information related to a clinical trial is not only delivering the facts but also how those facts are delivered. Studies have shown that patients would prefer that the information could be individualized and given in different formats, such as an audio or video platform.…”

Section: Discussionmentioning

confidence: 99%

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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Unmet needs among adolescent cancer patients: A pilot study

Abstract: The research findings support previously documented evidence that indicate gaps in cancer services provided to this age group. Importantly, these gaps can be narrowed by improving access to adolescent multidisciplinary teams and introducing specific training for health care professionals.

Cited by 100 publications

References 12 publications

Adolescent and Young Adult Oncology, Version 2.2018, NCCN Clinical Practice Guidelines in Oncology

Adolescent and Young Adult Oncology, Version 2.2018, NCCN Clinical Practice Guidelines in Oncology

Listening through Narratives: Using a Narrative Approach When Discussing Fertility Preservation Options with Young Cancer Patients

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

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