BACKGROUND: Light chain (AL) amyloidosis is a plasma cell neoplasm associated with high early mortality and severe morbidity that can cause severe disability. We explored the impact of AL amyloidosis on symptoms and well-being from the perspectives of patients and health care providers who regularly care for AL patients. We intended to develop a conceptual understanding of patient-reported outcomes in AL amyloidosis to identify the context of use and concept of interest for a clinical outcome assessments tool in this disease. METHOD: Twenty patients and ten professionals were interviewed. Patient interviews captured the spectrum of amyloidosis experience including time from diagnosis, type of organ involvement, and presence and type of treatment received. Interviews with professionals included physicians, advanced practice providers, registered nurse, and a patient advocate; these interviews covered similar topics. RESULTS: The impact of AL amyloidosis on patients' life was multidimensional, with highly subjective perceptions of normality and meaning. Four major themes from patients and experts included diagnosis of AL amyloidosis, living with AL amyloidosis, symptom burden, and social roles. Barriers to patient-reported outcomes data collection in patients were additionally explored from experts. The themes provide a comprehensive understanding of the important experiences of symptom burden and its impact on daily life from AL amyloidosis patients' and from the perspectives of professionals who care for patients with AL amyloidosis. CONCLUSION: These findings further the conceptual understanding and identification of a preliminary model of concept of interest for development of a clinical outcome assessments tool for AL amyloidosis.
BACKGROUND: Light chain (AL) amyloidosis is a plasma cell neoplasm associated with high early mortality and severe morbidity that can cause severe disability. We explored the impact of AL amyloidosis on symptoms and well-being from the perspectives of patients and health care providers who regularly care for AL patients. We intended to develop a conceptual understanding of patient-reported outcomes in AL amyloidosis to identify the context of use and concept of interest for a clinical outcome assessments tool in this disease. METHOD: Twenty patients and ten professionals were interviewed. Patient interviews captured the spectrum of amyloidosis experience including time from diagnosis, type of organ involvement, and presence and type of treatment received. Interviews with professionals included physicians, advanced practice providers, registered nurse, and a patient advocate; these interviews covered similar topics. RESULTS: The impact of AL amyloidosis on patients' life was multidimensional, with highly subjective perceptions of normality and meaning. Four major themes from patients and experts included diagnosis of AL amyloidosis, living with AL amyloidosis, symptom burden, and social roles. Barriers to patient-reported outcomes data collection in patients were additionally explored from experts. The themes provide a comprehensive understanding of the important experiences of symptom burden and its impact on daily life from AL amyloidosis patients' and from the perspectives of professionals who care for patients with AL amyloidosis. CONCLUSION: These findings further the conceptual understanding and identification of a preliminary model of concept of interest for development of a clinical outcome assessments tool for AL amyloidosis.
Authors: Eli Muchtar; Morie A Gertz; Shaji K Kumar; Martha Q Lacy; David Dingli; Francis K Buadi; Martha Grogan; Suzanne R Hayman; Prashant Kapoor; Nelson Leung; Amie Fonder; Miriam Hobbs; Yi Lisa Hwa; Wilson Gonsalves; Rahma Warsame; Taxiarchis V Kourelis; Stephen Russell; John A Lust; Yi Lin; Ronald S Go; Steven Zeldenrust; Robert A Kyle; S Vincent Rajkumar; Angela Dispenzieri Journal: Blood Date: 2017-01-26 Impact factor: 22.113
Authors: Kristen L McCausland; Tiffany P Quock; Avery A Rizio; Martha S Bayliss; Michelle K White; Spencer D Guthrie; Vaishali Sanchorawala Journal: Br J Haematol Date: 2018-11-22 Impact factor: 6.998
Authors: Shaji K Kumar; Morie A Gertz; Martha Q Lacy; David Dingli; Suzanne R Hayman; Francis K Buadi; Kristen Short-Detweiler; Steven R Zeldenrust; Nelson Leung; Philip R Greipp; John A Lust; Stephen J Russell; Robert A Kyle; S Vincent Rajkumar; Angela Dispenzieri Journal: Mayo Clin Proc Date: 2011-01 Impact factor: 7.616
Authors: Ron D Hays; Karen L Spritzer; Dagmar Amtmann; Jin-Shei Lai; Esi Morgan Dewitt; Nan Rothrock; Darren A Dewalt; William T Riley; James F Fries; Eswar Krishnan Journal: Arch Phys Med Rehabil Date: 2013-06-08 Impact factor: 3.966
Authors: Vaishali Sanchorawala; Kristen L McCausland; Michelle K White; Martha S Bayliss; Spencer D Guthrie; Stephen Lo; Martha Skinner Journal: Br J Haematol Date: 2017-08-29 Impact factor: 6.998