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Rehabilitation during intensive treatment of acute leukaemia including allogenic stem cell transplantation: a qualitative study of patient experiences
  1. Lene Østergaard Jepsen1,
  2. Lone Smidstrup Friis2,
  3. Mette Terp Hoybye3,
  4. Claus Werenberg Marcher4,
  5. Dorte Gilså Hansen MD5
  1. 1 Hematology, Odense Universitetshospital, Odense, Denmark
  2. 2 Hematology, Rigshospitalet, Kobenhavn, Denmark
  3. 3 Interdisciplinary Research Unit, Elective Surgery Center, Regionshospitalet Silkeborg, Silkeborg, Denmark
  4. 4 Hematology, Odense Universitetshospital, Odense, Denmark
  5. 5 National Research Centre for Cancer Rehabilitation, National Research Centre for Cancer Rehabilitation, Research Unit of General Practice, University of Southern Denmark, Odense, Denmark
  1. Correspondence to Dr Lene Østergaard Jepsen; lene.jepsen{at}rsyd.dk

Abstract

Objectives The diagnosis and treatment of acute leukaemia (AL) affect physical, psychosocial and existential functioning. Long-lasting treatment periods with impaired immune system, hygienic and social restrictions challenge patient well-being and rehabilitation as compared with other individuals with cancer. This study elucidates how AL patients, treated with curative intent in an outpatient setting, assess their physical, psychosocial and existential capability during and following treatment, and furthermore reports on the health initiatives offered to support their rehabilitation.

Design, setting, participants and interventions We conducted qualitative, semi-structured individual interviews with 16 AL patients, 6 months after end of treatment in the patients’ homes. This was the final interview, in a line of three, carried out as part of a larger qualitative study.

Results The data were analysed thematically through an inductive ongoing process consisting of four steps. The final step, selective coding, resulted in the three categories: physical activity, mental well-being and social activity. None of the patients were satisfied with their physical capability at the time of interview and experienced substantial impairment of functional capabilities. All patients struggled with anxiety and expressed a need for continuous progress in treatment and well-being to feel safe. It took an unexpected large effort to regain a meaningful social life, and patients still had to prioritise activities.

Conclusions AL patients suffered physically, psychologically and existentially throughout their illness trajectory. Rehabilitation initiatives deriving from the healthcare system and municipalities held room for improvement. Future programmes should pay attention to the contextual changes of treatment of this patient group and individuals’ changing needs and motivation of physical exercise.

  • rehabilitation
  • acute leukemia
  • everyday life
  • qualitative study

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Footnotes

  • Contributors LØJ participated in the design of the study, carried out the interviews, analyzed data and drafted the manuscript. LF participated in the design of the study and in the discussion of the analysis and the results. She also critically revised the manuscript. CM participated in the discussion of the analysis and the results. He also critically revised the manuscript. MH participated in the design of the study and in the discussion of the analysis and the results. She also critically revised the manuscript. DH participated in the design of the study and in the discussion of the analysis and the results. She also critically revised the manuscript. All authors read and approved the final manuscript.

  • Funding This work was supported by the University of Southern Denmark, DKK 400.000, the Region of Southern Denmark, DKK 500.000, The Danish Cancer Society, DKK 465.000, the Anders Hasselbalch Foundation, DKK 20.000, the Family Hede Nielsen Foundation, DKK 25.000 and the joint research pool between National University Hospital and Odense University Hospital supporting the highly specialised functions, DKK 40.000. The National Research Center of Cancer Rehabilitation, University of Southern Denmark is partly funded by the Danish Cancer Society.

  • Competing interests None declared.

  • Patient consent for publication Obtained.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data availability statement Data are available upon reasonable request.

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