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



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.


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.


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.


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 ( 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” ( document, developed by Data Archiving and Networked Services (DANS).

Code availability

Not applicable


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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



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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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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The authors declare no competing interests.

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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).

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