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Self-perceived cognitive functioning and quality of life among cancer survivors: results from the PROFILES registry

Abstract

Purpose

The aim was to investigate the level of self-perceived cognitive functioning and its associated factors among a large population-based cohort of cancer survivors and their matched controls.

Methods

Data were obtained from population-based PROFILES registry cohorts, including colon, rectum, prostate or thyroid cancer, Hodgkin lymphoma (HL), non-Hodgkin lymphoma (NHL), chronic lymphocytic leukemia, multiple myeloma (MM), melanoma, or basal cell carcinoma (BCC)/squamous cell carcinoma (SCC). All patients completed the EORTC QLQ-C30 from which self-perceived cognitive functioning, fatigue, functioning, and global health status/quality of life (GHS/QoL) were used. The PROFILES registry data were linked with the Netherlands Cancer Registry to obtain sociodemographic and clinical data.

Results

Six thousand seven hundred eighty-six survivors were included (response rate=76%). Survivors, except for melanoma and BCC/SCC, reported on average lower self-perceived cognitive functioning scores compared to their matched controls (all p’s<0.01). Largest differences with the norm were observed in thyroid cancer, HL, NHL and MM, and younger survivors (<50 years). Survivors with lower emotional functioning and more fatigue were more likely to report impaired self-perceived cognitive functioning.

Conclusion

Self-perceived impaired cognitive functioning is prevalent among a wide range of cancer survivors, especially among survivors <50 years. Approaches targeting cognitive problems including attention for co-occurring symptoms such as fatigue and emotional impairments are needed to improve care for these patients.

Implications for Cancer Survivors

Cancer survivors and clinicians should be aware that impaired self-perceived cognitive functioning is a frequently reported consequence of cancer and its treatment among survivors of various cancer types. Clinicians can redirect survivors to a relevant healthcare provider or program to target cognitive problems.

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Availability of data and material

Since 2011, PROFILES registry data is freely available according to the FAIR (Findable, Accessible, Interoperable, Reusable) data principles for non-commercial (international) scientific research, subject only to privacy and confidentiality restrictions. Data is made available through Questacy (DDI 3.x XML) and can be accessed by our website (www.profilesregistry.nl). In order to arrange optimal long-term data warehousing and dissemination, we follow the quality guidelines that are formulated in the “Data Seal of Approval” (www.datasealofapproval.org) document, developed by Data Archiving and Networked Services (DANS).

Code availability

Not applicable

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Funding

The PROFILES registry was funded by an Investment Grant (#480-08-009) of the Netherlands Organization for Scientific Research (The Hague, The Netherlands). This funding agency had no further role in study design; in the collection, analysis, and interpretation of data; in the writing of this paper; and in the decision to submit the paper for publication.

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Authors and Affiliations

Authors

Contributions

SO: conceptualization, data curation, formal analysis, investigation, methodology, and writing original draft

SBS: conceptualization, methodology, and writing-review and editing

CH: conceptualization, methodology, and writing-review and editing

OH: conceptualization, investigation, methodology, and writing-review and editing

DS: conceptualization, methodology, and writing-review and editing

LvdP: funding acquisition, conceptualization, investigation, methodology, and writing-review and editing

Corresponding author

Correspondence to Simone Oerlemans.

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Ethics approval

Ethical approval for the questionnaire and methodology was locally obtained for all study samples separately.

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Informed consent was obtained from all individual participants included in the study.

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Not applicable (consent statement regarding publishing an individual’s data or image)

Conflict of interest

The authors declare no competing interests.

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Cite this article

Oerlemans, S., Schagen, S.B., van den Hurk, C.J. et al. Self-perceived cognitive functioning and quality of life among cancer survivors: results from the PROFILES registry. J Cancer Surviv 16, 303–313 (2022). https://doi.org/10.1007/s11764-021-01023-9

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  • DOI: https://doi.org/10.1007/s11764-021-01023-9

Keywords

  • Cancer survivors
  • Cognitive functioning
  • Quality of life
  • Fatigue
  • Anxiety
  • Normative population