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Large-scale North American cancer survivorship surveys: 2011–2019 update

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Abstract

Purpose

There are gaps in our knowledge to provide quality cancer care to the growing numbers of survivors. Leveraging existing data to answer survivorship research questions is one approach to address these gaps. Therefore, the purpose of this paper is to replicate and expand a previous report of existing cancer survivorship survey data.

Methods

We conducted a trifold search strategy for relevant surveys and data sets to (1) determine the extent to which cancer survivors are being surveyed, (2) determine the topics being covered in these surveys, and (3) create a compendium of information about these surveys and data sets, so researchers can conduct additional analyses.

Results

Thirty-five surveys were identified and included in this report; most were longitudinal studies (71%) in adult cancer survivors (91%). The domains addressed in these surveys were general medical characteristics, medical conditions, costs, employment, symptoms and/or side effects, psychosocial factors and coping, perceived quality of care, and health behaviors.

Conclusions

Existing data are available for researchers to explore new knowledge to enhance cancer survivorship quality care. This is an opportunity to fully utilize existing data to answer survivorship questions in a cost effective manner.

Implications for Cancer Survivors

Survivors should be encouraged to participate in research studies as these data can close the gap in our knowledge and care of this growing population.

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Acknowledgements

Dr. Jung was supported by the National Institutes of Health (NIH) National Institute of Nursing Research (NINR) under Award Number T32NR007091. Dr. Mayer began work on this paper during the time she served as interim director of the Office of Cancer Survivorship, part of the National Cancer Institute’s Division of Cancer Control and Population Sciences.

Author information

Authors and Affiliations

  1. School of Nursing, University of North Carolina at Chapel Hill, Chapel Hill, NC, 27599-7460, USA

    Ahrang Jung

  2. ICF Next, 9300 Lee Highway, Fairfax, VA, 22031, USA

    Shelley S. Kay

  3. Department of Behavioral and Community Health, University of Maryland at College Park, College Park, MD, 20742-2611, USA

    Jennifer L. Robinson

  4. ICF, 9300 Lee Highway, Fairfax, VA, 22031, USA

    Bonny Bloodgood Sheppard

  5. School of Nursing, UNC Lineberger Comprehensive Cancer Center, University of North Carolina at Chapel Hill, Chapel Hill, NC, 27599-7460, USA

    Deborah K. Mayer

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  1. Ahrang Jung
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  4. Bonny Bloodgood Sheppard
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  5. Deborah K. Mayer
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Contributions

All authors contributed to the study conception and design. Material preparation and data collection were performed by Shelly S. Kay, Bonny Bloodgood Sheppard, and Jennifer L. Robinson. Data analysis was performed by Ahrang Jung. The first draft of the manuscript was written by Ahrang Jung and Deborah Mayer. All authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.

Corresponding author

Correspondence to Deborah K. Mayer.

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Appendix A. Search strategies

Appendix A. Search strategies

PubMed search strategy

(“Cancer”[ti] OR “Cancers”[ti]) AND (“Cancer Survivors”[mh] OR “Survivor”[tiab] OR “Survivors”[tiab] OR “Survivorship”[tiab]) AND (“Surveys and Questionnaires”[mh] OR “Survey”[tiab] OR “Interview”[tiab] OR “Questionnaire”[tiab] OR “Surveys”[tiab] OR “Interviews”[tiab] OR “Questionnaires”[tiab]) AND (“North America”[mh]) AND (English[lang]) AND (“2011/01/01”[PDAT]: “3000/12/31”[PDAT]).

Web of Science search strategy

TITLE: (“Cancer” OR “Cancers”) AND TOPIC: ((“Cancer Survivors” OR “Survivor” OR “Survivors” OR “Survivorship”)) AND TOPIC: ((“Survey” OR “Interview” OR “Questionnaire” OR “Surveys” OR “Interviews” OR “Questionnaires”)) Refined by: LANGUAGES: (English) AND COUNTRIES/REGIONS: (USA OR Canada OR Mexico) Timespan: 2011–2018. Indexes: SCI-Expanded, SSCI, CPCI-S, CPCI-SSH, BKCI-S, BKCI-SSH, ESCI, CCR-Expanded, IC.

Scopus search strategy

(TITLE: (“Cancer” OR “Cancers”)) AND ((TITLE-ABS-KEY (“Survivor” OR “Survivors” OR “Survivorship”) OR INDEXTERMS (“Cancer Survivor”))) AND (TITLE-ABS-KEY (“Survey” OR “Interview” OR “Questionnaire” OR “Surveys” OR “Interviews” OR “Questionnaires”)) AND (LIMIT-TO (PUBYEAR, 2018) OR (LIMIT-TO (PUBYEAR, 2017) OR (LIMIT-TO (PUBYEAR, 2016) OR (LIMIT-TO (PUBYEAR, 2015) OR (LIMIT-TO (PUBYEAR, 2014) OR (LIMIT-TO (PUBYEAR, 2013) OR (LIMIT-TO (PUBYEAR, 2012) OR (LIMIT-TO (PUBYEAR, 2011)) AND (LIMIT-TO ( AFFILCOUNTRY, “United States”) OR LIMIT-TO ( AFFILCOUNTRY, “Canada”) OR LIMIT-TO ( AFFILCOUNTRY, “Mexico”)) AND (LIMIT-TO (LANGUAGE, “English”)).

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Jung, A., Kay, S.S., Robinson, J.L. et al. Large-scale North American cancer survivorship surveys: 2011–2019 update. J Cancer Surviv 16, 1236–1267 (2022). https://doi.org/10.1007/s11764-021-01111-w

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