Differences in patient-reported outcomes (PROs) by disease severity in light chain (AL) amyloidosis.

Anita D'Souza, Aniko Szabo, Idayat Akinola, Muriel Finkel, Kathryn E Flynn
Author Information
  1. Anita D'Souza: Division of Hematology/Oncology, Department of Medicine, Medical College of Wisconsin, Milwaukee, Wisconsin, USA. ORCID
  2. Aniko Szabo: Division of Biostatistics, Institute for Health and Equity, Medical College of Wisconsin, Milwaukee, Wisconsin, USA.
  3. Idayat Akinola: Division of Hematology/Oncology, Department of Medicine, Medical College of Wisconsin, Milwaukee, Wisconsin, USA.
  4. Muriel Finkel: Amyloidosis Support Groups, Inc, Phoenix, Arizona, USA.
  5. Kathryn E Flynn: Division of Hematology/Oncology, Department of Medicine, Medical College of Wisconsin, Milwaukee, Wisconsin, USA. ORCID

Abstract

OBJECTIVE: To assess the impact of organ involvement on patient-reported outcomes (PROs) in light chain (AL) amyloidosis.
METHODS: PROs were evaluated using the KCCQ-12, PROMIS-29���+���2, and SF-36 in individuals with AL amyloidosis. The 2004 Mayo system was used to stage disease and cardiac, neurologic, and renal involvement was considered. Global physical and mental health (MH) scores, physical function (PF), fatigue, social function (SF), pain, sleep, and MH domains were evaluated. Effect sizes between scores were measured using Cohen's d.
RESULTS: Of 297 respondents, the median age at diagnosis was 60���years with 58% cardiac, 58% renal, and 30% neurologic involvement. Fatigue, PF, SF, and global physical health with PROMIS and SF-36 discriminated the most by stage. Significant discrimination in PROMIS and/or SF-36 was seen in PF, fatigue, and global physical health with cardiac involvement. For neurologic involvement, PF, fatigue, SF, pain, sleep, global physical, and MH with PROMIS and role physical, vitality, pain, general health, and physical component summary with SF-36 were discriminatory. For renal amyloid, pain by SF-36 and PROMIS, and SF-36 MH and role emotional subscales were significant.
CONCLUSIONS: Fatigue, PF, SF, and global physical health can discriminate stage, cardiac and neurologic, but not renal, AL amyloidosis involvement.

Keywords

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Grants

  1. K23 HL141445/NHLBI NIH HHS

MeSH Term

Humans
Immunoglobulin Light-chain Amyloidosis
Patient Acuity
Patient Reported Outcome Measures
Emotions
Fatigue