Patient-reported outcomes in patients with hematological relapse or progressive disease: a longitudinal observational study

Mia Sommer*, Lene Kongsgaard Nielsen, Lars Børty Nielsen, Rasmus Froberg Brøndum, Marlene Maria Nielsen, Anne Stoffersen Rytter, Charles Vesteghem, Marianne Tang Severinsen, Tarec Christoffer El-Galaly, Martin Bøgsted, Mette Grønkjær, Lone Jørgensen

*Corresponding author for this work

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Abstract

Background: Patients with hematological cancer who experience relapse or progressive disease often face yet another line of treatment and continued mortality risk that could increase their physical and emotional trauma and worsen their health-related quality of life. Healthcare professionals who use patient-reported outcomes to identify who will have specific sensitivities in particular health-related quality of life domains may be able to individualize and target treatment and supportive care, both features of precision medicine. Here, in a cohort of patients with relapsed or progressive hematological cancer, we sought to identify health-related quality of life domains in which they experienced deterioration after relapse treatment and to investigate health-related quality of life patterns. Method: Patients were recruited in connection with a precision medicine study at the Department of Hematology, Aalborg University Hospital. They completed the European Organization for Research and Treatment of Cancer questionnaire and the Hospital Anxiety and Depression Scale at baseline and at 3, 6, 9, and 12 months after the relapse diagnosis or progressive cancer. Modes of completion were electronically or on paper. Clinically relevant changes from baseline to 12 months were interpreted according to Cocks’ guidelines. We quantified the number of patients with moderate or severe symptoms and functional problems and the number who experienced improvements or deterioration from baseline to 12 months. Results: A total of 104 patients were included, of whom 90 (87%) completed baseline questionnaires and 50 (56%) completed the 12-month assessments. The three symptoms that patients most often reported as deteriorating were fatigue (18%), insomnia (18%), and diarrhea (18%). The three functions that patients most often reported as deteriorating were role (16%) and emotional (16%) and cognitive (16%) functioning. Conclusion: In this study, patient-reported outcome data were useful for identifying negatively affected health-related quality of life domains in patients with relapsed or progressive hematological cancer. We identified patients experiencing deterioration in health-related quality of life during treatment and characterized a potential role for patient-reported outcomes in precision medicine to target treatment and supportive care in this patient group.

Original languageEnglish
Article number251
JournalHealth and Quality of Life Outcomes
Volume19
Number of pages11
ISSN1477-7525
DOIs
Publication statusPublished - 4. Nov 2021

Bibliographical note

Publisher Copyright:
© 2021, The Author(s).

Keywords

  • Health-related quality of life
  • Hematological cancer
  • Patient-reported outcome
  • Precision medicine
  • Relapse
  • Humans
  • Neoplasm Recurrence, Local
  • Quality of Life
  • Fatigue
  • Surveys and Questionnaires
  • Patient Reported Outcome Measures

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