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Development of a conceptual model of patient-reported outcomes in light chain amyloidosis: a qualitative study.

Publication ,  Journal Article
D'Souza, A; Myers, J; Cusatis, R; Dispenzieri, A; Finkel, M; Panepinto, J; Flynn, KE
Published in: Qual Life Res
April 2022

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.

Duke Scholars

Published In

Qual Life Res

DOI

EISSN

1573-2649

Publication Date

April 2022

Volume

31

Issue

4

Start / End Page

1083 / 1092

Location

Netherlands

Related Subject Headings

  • Quality of Life
  • Qualitative Research
  • Patient Reported Outcome Measures
  • Humans
  • Health Policy & Services
  • Health Personnel
  • Amyloidosis
  • 44 Human society
  • 42 Health sciences
  • 1701 Psychology
 

Citation

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D’Souza, A., Myers, J., Cusatis, R., Dispenzieri, A., Finkel, M., Panepinto, J., & Flynn, K. E. (2022). Development of a conceptual model of patient-reported outcomes in light chain amyloidosis: a qualitative study. Qual Life Res, 31(4), 1083–1092. https://doi.org/10.1007/s11136-021-02943-w
D’Souza, Anita, Judith Myers, Rachel Cusatis, Angela Dispenzieri, Muriel Finkel, Julie Panepinto, and Kathryn E. Flynn. “Development of a conceptual model of patient-reported outcomes in light chain amyloidosis: a qualitative study.Qual Life Res 31, no. 4 (April 2022): 1083–92. https://doi.org/10.1007/s11136-021-02943-w.
D’Souza A, Myers J, Cusatis R, Dispenzieri A, Finkel M, Panepinto J, et al. Development of a conceptual model of patient-reported outcomes in light chain amyloidosis: a qualitative study. Qual Life Res. 2022 Apr;31(4):1083–92.
D’Souza, Anita, et al. “Development of a conceptual model of patient-reported outcomes in light chain amyloidosis: a qualitative study.Qual Life Res, vol. 31, no. 4, Apr. 2022, pp. 1083–92. Pubmed, doi:10.1007/s11136-021-02943-w.
D’Souza A, Myers J, Cusatis R, Dispenzieri A, Finkel M, Panepinto J, Flynn KE. Development of a conceptual model of patient-reported outcomes in light chain amyloidosis: a qualitative study. Qual Life Res. 2022 Apr;31(4):1083–1092.
Journal cover image

Published In

Qual Life Res

DOI

EISSN

1573-2649

Publication Date

April 2022

Volume

31

Issue

4

Start / End Page

1083 / 1092

Location

Netherlands

Related Subject Headings

  • Quality of Life
  • Qualitative Research
  • Patient Reported Outcome Measures
  • Humans
  • Health Policy & Services
  • Health Personnel
  • Amyloidosis
  • 44 Human society
  • 42 Health sciences
  • 1701 Psychology