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Assessing the psychosocial needs and program preferences of adolescents and young adults with cancer

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Abstract

Purpose

Adolescents and young adults (AYA) are a developmentally distinct cancer group, vulnerable to psychosocial late effects and with a range of unmet psychosocial needs. We sought to better understand psychosocial care needs and program preferences to inform development of more easily accessible and effective AYA psychosocial programs.

Methods

AYA on and off treatment for cancer (n = 111, ages 12–25 years) were approached during an outpatient clinic visit and completed a survey as part of a quality improvement initiative. The survey comprised an open-ended question on challenges related to cancer and treatment and closed-ended questions on access to and preference for various services and programs. Qualitative analyses were used to summarize themes for most significant challenges, and descriptive statistics were used for closed-ended questions.

Results

Most common themes for challenges included treatments and associated physical changes, barriers to pursuit of academic/vocational goals, and social isolation. For preferred program focus, AYA ranked highest increasing strength and endurance/reintegration into sports and dealing with physical changes resulting from treatment. AYA’s preferred modalities for program delivery were one-on-one/in person and message boards/Facebook. Most of the sample indicated that lack of awareness prevented their accessing available programs.

Conclusions

New information was identified that can be used to address access barriers and to offer AYA psychosocial programs in formats that might improve interest and accessibility. Ongoing evaluation of AYA psychosocial programs is recommended to determine acceptability, feasibility, and effectiveness to meet the evolving needs of AYA patients with cancer.

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Acknowledgments

We thank the members of the AYA Patient Steering Committee for their feedback on the survey and Colleen Kase and Sarah Voisine for their contributions to qualitative data analyses.

Conflict of interest

The authors declare that they have no competing interest.

Author information

Authors and Affiliations

  1. Division of Oncology, The Children’s Hospital of Philadelphia, 3501 Civic Center Blvd., 10th floor CTRB, Philadelphia, PA, 19104, USA

    Lamia P. Barakat, Liana R. Galtieri, Dava Szalda & Lisa A. Schwartz

  2. Department of Pediatrics, Perelman School of Medicine, University of Pennsylvania, 3501 Civic Center Blvd., 10th floor CTRB, Philadelphia, PA, 19104, USA

    Lamia P. Barakat & Lisa A. Schwartz

Authors
  1. Lamia P. Barakat
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  2. Liana R. Galtieri
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  3. Dava Szalda
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  4. Lisa A. Schwartz
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Correspondence to Lamia P. Barakat.

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Barakat, L.P., Galtieri, L.R., Szalda, D. et al. Assessing the psychosocial needs and program preferences of adolescents and young adults with cancer. Support Care Cancer 24, 823–832 (2016). https://doi.org/10.1007/s00520-015-2849-8

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  • DOI: https://doi.org/10.1007/s00520-015-2849-8

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