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Introducing patient-reported outcome in the acute leukemia quality registries in Sweden

Lennmyr, Emma Bergfelt ; Karlsson, Karin LU ; Abrahamsson, Marie ; Ebrahim, Fereshte ; Lübking, Anna LU ; Höglund, Martin ; Juliusson, Gunnar LU and Hallböök, Heléne (2020) In European Journal of Haematology 104(6). p.571-580
Abstract

Objectives: The use of patient-reported outcome (PRO) measured outside clinical trials is not well defined. We report the first analysis of the prospective PRO study within the Swedish acute myeloid leukemia (AML) and the acute lymphoblastic leukemia (ALL) registries. Methods: PRO was requested 6 months after diagnosis. The EORTC Quality of life Questionnaire Core 30-item, the Patient Health Questionnaire-8 (PHQ-8), and questions from a Swedish National Cancer Questionnaire were used. Results: An invitation letter was sent to 398 patients; 255 (64%) responded, 60% web-based, and 40% on paper. The ALL cohort had lower physical, role and social functioning, higher symptom burden, and more financial difficulties compared to the AML cohort.... (More)

Objectives: The use of patient-reported outcome (PRO) measured outside clinical trials is not well defined. We report the first analysis of the prospective PRO study within the Swedish acute myeloid leukemia (AML) and the acute lymphoblastic leukemia (ALL) registries. Methods: PRO was requested 6 months after diagnosis. The EORTC Quality of life Questionnaire Core 30-item, the Patient Health Questionnaire-8 (PHQ-8), and questions from a Swedish National Cancer Questionnaire were used. Results: An invitation letter was sent to 398 patients; 255 (64%) responded, 60% web-based, and 40% on paper. The ALL cohort had lower physical, role and social functioning, higher symptom burden, and more financial difficulties compared to the AML cohort. A PHQ-8 score ≥ 10p, which indicates depression, was reported in 18% of the patients; 33% of these patients reported being prescribed antidepressants. The patients' overall experience of care was satisfying, but more psychological and practical support was desired. There was no difference in survival between patients who reported their PRO and those who did not. Follow-up at 2 and 4 years is ongoing. Conclusions: PRO collected in a registry-based setting is feasible, but the selection of time points and questionnaires are delicate in a diverse patient population.

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organization
publishing date
type
Contribution to journal
publication status
published
subject
keywords
acute leukemia, depression, EORTC QLQ-C30, infertility, patient-reported experience, patient-reported outcome, PHQ-8, quality of life
in
European Journal of Haematology
volume
104
issue
6
pages
10 pages
publisher
Wiley-Blackwell
external identifiers
  • pmid:32080889
  • scopus:85081611249
ISSN
0902-4441
DOI
10.1111/ejh.13399
language
English
LU publication?
yes
id
5505a3ed-eb84-4172-98b4-4c09af6e9375
date added to LUP
2020-04-14 16:41:20
date last changed
2021-02-17 05:34:57
@article{5505a3ed-eb84-4172-98b4-4c09af6e9375,
  abstract     = {<p>Objectives: The use of patient-reported outcome (PRO) measured outside clinical trials is not well defined. We report the first analysis of the prospective PRO study within the Swedish acute myeloid leukemia (AML) and the acute lymphoblastic leukemia (ALL) registries. Methods: PRO was requested 6 months after diagnosis. The EORTC Quality of life Questionnaire Core 30-item, the Patient Health Questionnaire-8 (PHQ-8), and questions from a Swedish National Cancer Questionnaire were used. Results: An invitation letter was sent to 398 patients; 255 (64%) responded, 60% web-based, and 40% on paper. The ALL cohort had lower physical, role and social functioning, higher symptom burden, and more financial difficulties compared to the AML cohort. A PHQ-8 score ≥ 10p, which indicates depression, was reported in 18% of the patients; 33% of these patients reported being prescribed antidepressants. The patients' overall experience of care was satisfying, but more psychological and practical support was desired. There was no difference in survival between patients who reported their PRO and those who did not. Follow-up at 2 and 4 years is ongoing. Conclusions: PRO collected in a registry-based setting is feasible, but the selection of time points and questionnaires are delicate in a diverse patient population.</p>},
  author       = {Lennmyr, Emma Bergfelt and Karlsson, Karin and Abrahamsson, Marie and Ebrahim, Fereshte and Lübking, Anna and Höglund, Martin and Juliusson, Gunnar and Hallböök, Heléne},
  issn         = {0902-4441},
  language     = {eng},
  number       = {6},
  pages        = {571--580},
  publisher    = {Wiley-Blackwell},
  series       = {European Journal of Haematology},
  title        = {Introducing patient-reported outcome in the acute leukemia quality registries in Sweden},
  url          = {http://dx.doi.org/10.1111/ejh.13399},
  doi          = {10.1111/ejh.13399},
  volume       = {104},
  year         = {2020},
}