Lamia P Barakat1,2, Liana R Galtieri3, Dava Szalda3, Lisa A Schwartz3,4. 1. Division of Oncology, The Children's Hospital of Philadelphia, 3501 Civic Center Blvd., 10th floor CTRB, Philadelphia, PA, 19104, USA. barakat@email.chop.edu. 2. Department of Pediatrics, Perelman School of Medicine, University of Pennsylvania, 3501 Civic Center Blvd., 10th floor CTRB, Philadelphia, PA, 19104, USA. barakat@email.chop.edu. 3. Division of Oncology, The Children's Hospital of Philadelphia, 3501 Civic Center Blvd., 10th floor CTRB, Philadelphia, PA, 19104, USA. 4. Department of Pediatrics, Perelman School of Medicine, University of Pennsylvania, 3501 Civic Center Blvd., 10th floor CTRB, Philadelphia, PA, 19104, USA.
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.
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.
Entities:
Keywords:
Adolescent and young adults; Cancer; Health-related quality of life; Psychosocial programs
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