Angela Steineck1, Miranda C Bradford2, Alison O'Daffer3, Kaitlyn M Fladeboe4, Maeve B O'Donnell4, Samantha Scott5, Joyce P Yi-Frazier3, Abby R Rosenberg6. 1. Seattle Children's Hospital (A.S.), Cancer and Blood Disorders Center, Seattle, Washington, USA; Seattle Children's Research Institute (A.S., A.O., K.M.F., M.B.O., J.P.Y-F., A.R.R.), Center for Clinical and Translational Research, Seattle, Washington, USA; University of Washington School of Medicine (A.S.), Department of Pediatrics, Seattle, Washington, USA; University of Washington (A.S., K.M.F., M.B.O., A.R.R.), Cambia Palliative Care Center of Excellence, Seattle, Washington, USA; MACC Fund Center for Cancer and Blood Disorders (A.S.), Department of Pediatrics, Medical College of Wisconsin, Milwaukee, Wisconsin, USA. 2. Core for Biostatistics (M.C.B.), Epidemiology, and Analytics in Research, Seattle Children's Research Institute, Seattle, Washington, USA. 3. Seattle Children's Research Institute (A.S., A.O., K.M.F., M.B.O., J.P.Y-F., A.R.R.), Center for Clinical and Translational Research, Seattle, Washington, USA. 4. Seattle Children's Research Institute (A.S., A.O., K.M.F., M.B.O., J.P.Y-F., A.R.R.), Center for Clinical and Translational Research, Seattle, Washington, USA; University of Washington (A.S., K.M.F., M.B.O., A.R.R.), Cambia Palliative Care Center of Excellence, Seattle, Washington, USA. 5. Department of Psychology (S.S.), University of Denver, Denver, Colorado, USA. 6. Seattle Children's Hospital (A.S.), Cancer and Blood Disorders Center, Seattle, Washington, USA; Seattle Children's Research Institute (A.S., A.O., K.M.F., M.B.O., J.P.Y-F., A.R.R.), Center for Clinical and Translational Research, Seattle, Washington, USA; University of Washington School of Medicine (A.S.), Department of Pediatrics, Seattle, Washington, USA; University of Washington (A.S., K.M.F., M.B.O., A.R.R.), Cambia Palliative Care Center of Excellence, Seattle, Washington, USA. Electronic address: abby.rosenberg@seattlechildrens.org.
Abstract
CONTEXT: Adolescents and young adults (AYAs) with cancer report worse health-related quality of life (HRQOL) than other age groups. Symptom burden is a modifiable predictor of HRQOL. OBJECTIVES: The objective of this study was to identify which symptoms are most burdensome to AYAs with advanced cancer. METHODS: In this observational study, English-speaking individuals aged 12-25 years undergoing treatment for advanced cancer completed assessments of symptom burden (Memorial Symptom Assessment Scale) and HRQOL (Pediatric Quality of Life Inventory Generic Form and Cancer Module; minimal clinically important difference 4.4). We dichotomized participants as having low (<7) or high (≥7) symptom prevalence. Mixed regression models estimated HRQOL differences between groups. For individual symptoms, unadjusted mixed models estimated HRQOL reductions. RESULTS: N = 58 AYAs completed baseline surveys. The median age was 17 years (IQR 15-19), 58% were male, 59% identified as white, and 44% were diagnosed with leukemia/lymphoma. High symptom prevalence was associated with a mean generic HRQOL 7 points lower (95% CI: -11, -3; P < 0.01) and cancer-specific HRQOL score 12 points lower (95% CI: -17, -7; P < 0.01) than low symptom prevalence. The most prevalent symptoms were fatigue (71%), pain (58%), and difficulty sleeping (58%). Fatigue (-8), difficulty concentrating (-7), and mouth sores (-6) were associated with the greatest generic HRQOL score reductions. Dysphagia (-12), difficulty concentrating (-12), and sadness (-11) were associated with the greatest cancer-specific HRQOL score reductions. CONCLUSION: The symptom experience among AYAs with advanced cancer is unique. Separate evaluation of AYA's symptoms may optimize management and improve HRQOL.
CONTEXT: Adolescents and young adults (AYAs) with cancer report worse health-related quality of life (HRQOL) than other age groups. Symptom burden is a modifiable predictor of HRQOL. OBJECTIVES: The objective of this study was to identify which symptoms are most burdensome to AYAs with advanced cancer. METHODS: In this observational study, English-speaking individuals aged 12-25 years undergoing treatment for advanced cancer completed assessments of symptom burden (Memorial Symptom Assessment Scale) and HRQOL (Pediatric Quality of Life Inventory Generic Form and Cancer Module; minimal clinically important difference 4.4). We dichotomized participants as having low (<7) or high (≥7) symptom prevalence. Mixed regression models estimated HRQOL differences between groups. For individual symptoms, unadjusted mixed models estimated HRQOL reductions. RESULTS: N = 58 AYAs completed baseline surveys. The median age was 17 years (IQR 15-19), 58% were male, 59% identified as white, and 44% were diagnosed with leukemia/lymphoma. High symptom prevalence was associated with a mean generic HRQOL 7 points lower (95% CI: -11, -3; P < 0.01) and cancer-specific HRQOL score 12 points lower (95% CI: -17, -7; P < 0.01) than low symptom prevalence. The most prevalent symptoms were fatigue (71%), pain (58%), and difficulty sleeping (58%). Fatigue (-8), difficulty concentrating (-7), and mouth sores (-6) were associated with the greatest generic HRQOL score reductions. Dysphagia (-12), difficulty concentrating (-12), and sadness (-11) were associated with the greatest cancer-specific HRQOL score reductions. CONCLUSION: The symptom experience among AYAs with advanced cancer is unique. Separate evaluation of AYA's symptoms may optimize management and improve HRQOL.
Authors: Meaghann S Weaver; Katherine E Heinze; Katherine P Kelly; Lori Wiener; Robert L Casey; Cynthia J Bell; Joanne Wolfe; Amy M Garee; Anne Watson; Pamela S Hinds Journal: Pediatr Blood Cancer Date: 2015-12 Impact factor: 3.167
Authors: R K Portenoy; H T Thaler; A B Kornblith; J M Lepore; H Friedlander-Klar; E Kiyasu; K Sobel; N Coyle; N Kemeny; L Norton Journal: Eur J Cancer Date: 1994 Impact factor: 9.162
Authors: Ethan Basch; Allison M Deal; Mark G Kris; Howard I Scher; Clifford A Hudis; Paul Sabbatini; Lauren Rogak; Antonia V Bennett; Amylou C Dueck; Thomas M Atkinson; Joanne F Chou; Dorothy Dulko; Laura Sit; Allison Barz; Paul Novotny; Michael Fruscione; Jeff A Sloan; Deborah Schrag Journal: J Clin Oncol Date: 2015-12-07 Impact factor: 44.544
Authors: Rachel E Hughes; Lucy R Holland; Diana Zanino; Emma Link; Natasha Michael; Kate E Thompson Journal: J Adolesc Young Adult Oncol Date: 2015-06 Impact factor: 2.223
Authors: Jennifer W Mack; Molly McFatrich; Janice S Withycombe; Scott H Maurer; Shana S Jacobs; Li Lin; Nicole R Lucas; Justin N Baker; Courtney M Mann; Lillian Sung; Deborah Tomlinson; Pamela S Hinds; Bryce B Reeve Journal: JAMA Pediatr Date: 2020-11-02 Impact factor: 16.193