An actionable needs assessment for adolescents and young adults with cancer: the AYA Needs Assessment &amp; Service Bridge (NA-SB)

Haines, Emily; Lux, Lauren; Smitherman, Andrew B.; Kessler, Melody L.; Schonberg, Jacob; Dopp, Alex R.; Stover, Angela M.; Powell, Byron J.; Birken, Sarah A.

doi:10.1007/s00520-021-06024-z

Cited by 15 publications

(16 citation statements)

References 35 publications

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“…These findings demonstrate that unique needs of YAs may go unidentified as a result of their residential location and thus support advancements toward a more uniform approach to needs assessment and resource identification in YAs. 59 Supported by other studies connecting physical environment with care satisfaction, 60 we found that residential location affected both supportive care receipt and treatment satisfaction. Considering the relationship between treatment satisfaction and supportive care service metrics, we found that nonmetro YAs, who had a statistically significant decreased satisfaction with available treatments, had lower documentation of all supportive care discussions studied.…”

Section: Discussionsupporting

confidence: 71%

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Disparities in Treatment Satisfaction and Supportive Care Receipt for Young Adult Oncology Patients on the Basis of Residential Location

Hess

Anandan

Osman

et al. 2022

JCO Oncology Practice

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PURPOSE: Adolescent and young adult oncology programs are critical but exist primarily in academic centers, prompting potential disparities in care on the basis of patient residence. We studied the impact of residential location on supportive care receipt and treatment satisfaction in young adults (YAs) with cancer age 19-39 years treated at the University of Wisconsin Carbone Cancer Center (UWCCC). METHODS: YA patients with cancer age 19-39 years seen at UWCCC from March 30, 2019, to March 29, 2020, were sent a survey assessing supportive care receipt and satisfaction. Survey results were compared with retrospective chart review of YAs seen at UWCCC between April 1, 2011, and April 1, 2021. Data were categorized on the basis of residential location using distance from UWCCC and 2013 Rural-Urban Continuum Code (RUCC). RESULTS: Survey results were obtained for 145 YAs, including 29 from nonmetro RUCC (20.0%) and 81 living > 20 miles from UWCCC (55.9%). YAs from nonmetro locations had lower satisfaction with available treatments (79.3% v 91.4%, P = .005), and distant YAs living > 20 miles from UWCCC more frequently identified location as a barrier to supportive care receipt (35.6% v 15.8%, P = .02). Metro YAs more frequently listed fertility consultations as unavailable (38.0% v 16.0%, P = .04) in the survey despite chart review data showing higher rates of sexual health assessments (48.2% v 20.4%, P = .002) and fertility visits (29.6% v 18.5%, P = .18). CONCLUSION: We identified differences in both supportive care receipt and treatment satisfaction on the basis of residential location. These findings support the need for measures to successfully meet treatment and supportive care needs regardless of residential location.

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Section: Discussionsupporting

confidence: 71%

Section: Discussionmentioning

confidence: 99%

Disparities in Treatment Satisfaction and Supportive Care Receipt for Young Adult Oncology Patients on the Basis of Residential Location

Hess

Anandan

Osman

et al. 2022

JCO Oncology Practice

View full text Add to dashboard Cite

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“…After screening the title and abstract of 6183 papers (excluding duplicates) for relevance to the subject, 131 papers were selected. A total of 67 articles [ 1 , 7 , 12 , 13 , 14 , 15 , 16 , 17 , 21 , 28 , 29 , 30 , 31 , 32 , 33 , 34 , 35 , 36 , 37 , 38 , 39 , 40 , 41 , 42 , 43 , 44 , 45 , 46 , 47 , 48 , 49 , 50 , 51 , 52 , 53 , 54 , 55 , 56 , 57 , 58 , 59 , 60 , 61 , 62 , 63 , 64 , 65 , 66 , 67 , 68 , 69 , 70 , 71 , 72 , 73 , 74 , 75 , …”

Section: Methodsmentioning

confidence: 99%

Reframing Patient Experience Approaches and Methods to Achieve Patient-Centeredness in Healthcare: Scoping Review

Kim

Nam

Koo

2022

IJERPH

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(1) There has been growing attention among healthcare researchers on new and innovative methodologies for improving patient experience. This study reviewed the approaches and methods used in current patient experience research by applying the perspective of design thinking to discuss practical methodologies for a patient-centered approach and creative problem-solving. (2) A scoping review was performed to identify research trends in healthcare. A four-stage design thinking process (“Discover”, “Define”, “Develop”, and “Deliver”) and five themes (“User focus”, “Problem-framing”, “Visualization”, “Experimentation”, and “Diversity”), characterizing the concept, were used for the analysis framework. (3) After reviewing 67 studies, the current studies show that the iterative process of divergent and convergent thinking is lacking, which is a core concept of design thinking, and it is necessary to employ an integrative methodology to actively apply collaborative, multidisciplinary, and creative attributes for a specific and tangible solution. (4) For creative problem-solving to improve patient experience, we should explore the possibilities of various solutions by an iterative process of divergent and convergent thinking. A concrete and visualized solution should be sought through active user interactions from various fields. For this, a specific methodology that allows users to collaborate by applying the integrative viewpoint of design thinking should be introduced.

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“…The number of AYAs living with serious illnesses such as cancer is growing globally ( Viner et al, 2011 ; Cohen and Patel, 2014 ; GBD 2019 Adolescent Young Adult Cancer Collaborators, 2022 ). In 2020, an estimated 90,000 adolescents and young adults (AYA) were diagnosed with cancer in the United States ( Haines et al, 2021 ). For many, death is an inevitable outcome of their disease, making advance care planning (ACP) a critical component of care ( Brown and Sourkes, 2006 ; DeCourcey et al, 2021 ).…”

Section: Introductionmentioning

confidence: 99%

Adolescent and Young Adult Initiated Discussions of Advance Care Planning: Family Member, Friend and Health Care Provider Perspectives

et al. 2022

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Background and AimsEnd-of-life (EoL) discussions can be difficult for seriously ill adolescents and young adults (AYAs). Researchers aimed to determine whether completing Voicing My CHOiCES (VMC)—a research-informed advance care planning (ACP) guide—increased communication with family, friends, or health care providers (HCPs), and to evaluate the experience of those with whom VMC was shared.MethodsFamily, friends, or HCPs who the AYAs had shared their completed VMC with were administered structured interviews to assess their perception of the ACP discussion, changes in their relationship, conversation quality, and whether the discussion prompted changes in care. Open-ended responses underwent thematic analysis.ResultsOne-month post-completion, 65.1% of AYA had shared VMC completion with a family member, 22.6% with a friend, and 8.9% with an HCP. Among a sample of respondents, family (47%) and friends (33%) reported a positive change in their relationship with the AYA. Participant descriptions of the experience fell into five themes: positive experience (47%), difficult experience (44%), appreciated a guide to facilitate discussion (35%), provided relief (21%), and created worry/anxiety (9%). Only 1 HCP noted a treatment change. Family (76%), friends (67%), and HCP (50%) did not think the AYA would have discussed EoL preferences without completing VMC.ConclusionsVMC has potential to enhance communication about ACP between AYA and their family and friends, though less frequently with HCPs. Participants reported a positive change in their relationship with the AYA after discussing VMC, and described experiencing the conversation as favorable, even when also emotionally difficult.

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An actionable needs assessment for adolescents and young adults with cancer: the AYA Needs Assessment & Service Bridge (NA-SB)

Cited by 15 publications

References 35 publications

Disparities in Treatment Satisfaction and Supportive Care Receipt for Young Adult Oncology Patients on the Basis of Residential Location

Disparities in Treatment Satisfaction and Supportive Care Receipt for Young Adult Oncology Patients on the Basis of Residential Location

Reframing Patient Experience Approaches and Methods to Achieve Patient-Centeredness in Healthcare: Scoping Review

Adolescent and Young Adult Initiated Discussions of Advance Care Planning: Family Member, Friend and Health Care Provider Perspectives

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