Quality of life among survivors of adolescent and young adult cancer in Canada: A Young Adults With Cancer in Their Prime (YACPRIME) study

Cancer ◽  
2020 ◽  
Author(s):  
Fiona S. M. Schulte ◽  
Karine Chalifour ◽  
Geoff Eaton ◽  
Sheila N. Garland
Keyword(s):  
Quality Of Life ◽  
Young Adults ◽  
Young Adult ◽  
Adolescent And Young Adult ◽  
Young Adult Cancer

scholarly journals “I have SMA, SMA doesn’t have me”- A Qualitative Snapshot into the Challenges, Successes, and Quality of Life of Adolescents and Young Adults with SMA

2021 ◽  
Author(s):  
Allison Joy Mazzella ◽  
Mary Curry ◽  
Lisa Belter ◽  
Rosangel Cruz ◽  
Jill Jarecki
Keyword(s):  
Quality Of Life ◽  
Young Adults ◽  
Young Adult ◽  
Transition Period ◽  
Muscular Atrophy ◽  
Adolescents And Young Adults ◽  
Adolescent And Young Adult ◽  
Free Text ◽  
Patient Reported

Abstract Background: With the approval of three treatments for spinal muscular atrophy (SMA) and several promising therapies on the horizon, the SMA adolescent and young adult populations are expected to evolve in the coming years. It is imperative to understand this cohort as it exists today to provide optimal care and resources, as well as to assess possible treatment effects over time. In 2018, Cure SMA launched two initiatives geared towards understanding adolescents and young adults with SMA, ages 12-25. First, Cure SMA launched a Quality of Life (QoL) survey to capture quantitative and qualitative information on this specific age demographic. Concurrently, Cure SMA invited SMA-affected individuals, ages 12-25, to create a three-minute video on their everyday experiences living with SMA. An inductive thematic analysis of the free-text survey questions along with the video contest findings are reported here. Results: Eighty-five individuals — 6 type Is, 58 type IIs, and 21 type IIIs — completed the Quality of Life free-response, while six individuals participated in the SMA awareness video contest. In both settings, individuals detailed a variety of challenges, including but not limited to forming or maintaining close relationships, experiencing feelings of isolation, challenges with accessibility, independence, and dealing with the stigma of being perceived as mentally disabled. Individuals also discussed their successes, including but not limited to higher education enrollment and attendance, development of quality friendships, and perseverance through obstacles. Additionally, notably in the survey, 39% of respondents requested the creation of an SMA peer support group in efforts to connect with each other as well as collectively navigate the aforementioned challenges they face. Conclusion: Together, these findings provide a rare glimpse into the unique mindsets, challenges and motivations of SMA adolescents and young adults, via patient-reported measures instead of caregiver proxy. The adolescent and young adult age demographics assessed represent a critical transition period in life and in SMA care. No one understands the needs of an adolescent or young adult with SMA better than the individuals themselves, and it is critical to encapsulate their insights to affect change.

scholarly journals “I have SMA, SMA doesn’t have me”- A Qualitative Snapshot into the Challenges, Successes, and Quality of Life of Adolescents and Young Adults with SMA

2020 ◽  
Author(s):  
Allison Joy Mazzella ◽  
Mary Curry ◽  
Lisa Belter ◽  
Rosangel Cruz ◽  
Jill Jarecki
Keyword(s):  
Quality Of Life ◽  
Young Adults ◽  
Young Adult ◽  
Transition Period ◽  
Muscular Atrophy ◽  
Adolescents And Young Adults ◽  
Adolescent And Young Adult ◽  
Free Text ◽  
Patient Reported

Abstract Background: With the approval of three treatments for spinal muscular atrophy (SMA) and several promising therapies on the horizon, the SMA adolescent and young adult populations are expected to evolve in the coming years. It is imperative to understand this cohort as it exists today to provide optimal care and resources, as well as to assess possible treatment effects over time. In 2018, Cure SMA launched two initiatives geared towards understanding adolescents and young adults with SMA, ages 12-25. First, Cure SMA launched a Quality of Life (QoL) survey to capture quantitative and qualitative information on this specific age demographic. Concurrently, Cure SMA invited SMA-affected individuals, ages 12-25, to create a three-minute video on their everyday experiences living with SMA. An inductive thematic analysis of the free-text survey questions along with the video contest findings are reported here. Results: Eighty-five individuals — 6 type Is, 58 type IIs, and 21 type IIIs — completed the Quality of Life free-response, while six individuals participated in the SMA awareness video contest. In both settings, individuals detailed a wide variety of challenges, including but not limited to forming or maintaining close relationships, feelings of isolation, challenges with accessibility, independence, and dealing with the stigma of being perceived as mentally disabled. Individuals also discussed their successes, including but not limited to higher education enrollment and attendance, development of quality friendships, and perseverance through obstacles. Additionally, in the survey, a substantial number of respondents (39%) requested the creation of an SMA peer support group in efforts to connect with each other as well as collectively navigate the aforementioned challenges they face. Conclusion: Together, these findings provide a rare glimpse into the unique mindsets, challenges and motivations of SMA adolescents and young adults, via patient-reported measures instead of caregiver proxy. The adolescent and young adult age demographics assessed represent a critical transition period in life and in SMA care. No one understands the needs of an adolescent or young adult with SMA better than the individuals themselves, and it is critical to encapsulate their insights to affect change.

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