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The Cancer Loneliness Scale and Cancer-related Negative Social Expectations Scale: development and validation

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Abstract

Purpose

Loneliness is a known risk factor for poor mental and physical health outcomes and quality of life in the general population, and preliminary research suggests that loneliness is linked to poorer health outcomes in cancer patients as well. Various aspects of the cancer experience contribute to patients feeling alone and misunderstood. Furthermore, loneliness theory suggests that negative social expectations, which may specifically relate to the cancer experience, precipitate and sustain loneliness. Cancer-specific tools are needed to assess key constructs of this theory. In the current study, we developed and tested measures of (1) loneliness attributed to cancer (i.e., cancer-related loneliness) and (2) negative social expectations related to cancer.

Methods

First, we developed the items for the measures based on theory, prior research, and expert feedback. Next, we assessed the measures’ psychometric properties (i.e., internal consistency and construct validity) in a diverse sample of cancer patients.

Results

The final products included a 7-item unidimensional Cancer Loneliness Scale and a 5-item unidimensional Cancer-related Negative Social Expectations Scale. Evidence of excellent reliability and validity was found for both measures.

Conclusions

The resulting measures have both clinical and research utility.

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Acknowledgements

This project was supported by the American Psychological Association. Rebecca Adams’s work was supported by R25CA117865 (V. Champion, PI) from the National Cancer Institute. Catherine Mosher’s work was supported by the National Cancer Institute under Grants K05CA175048 and K07CA168883. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Cancer Institute. The authors would like to thank the study participants and Madison Stout for her assistance.

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Authors and Affiliations

  1. Department of Pediatrics, Stanford University School of Medicine, 780 Welch Road, MC 5776, Palo Alto, CA, 94304, USA

    Rebecca N. Adams

  2. Department of Psychology, Indiana University-Purdue University Indianapolis, 402 North Blackford Street, LD 124, Indianapolis, IN, 46202, USA

    Catherine E. Mosher, Kevin L. Rand & Adam T. Hirsh

  3. Department of Biostatistics, Indiana University School of Medicine and School of Public Health, 410 W. Tenth St., Suite 3000, Indianapolis, IN, 46202, USA

    Patrick O. Monahan

  4. Department of Medicine, Indiana University School of Medicine, 535 Barnhill Drive, Indiana Cancer Pavilion, Suite 446, Indianapolis, IN, 46202, USA

    Rafat Abonour

  5. Indiana University School of Medicine, Indianapolis, IN, 46202, USA

    Kurt Kroenke

  6. VA HSR&D Center for Health Information and Communication, Indianapolis, IN, 46202, USA

    Kurt Kroenke

  7. Regenstrief Institute, Inc. (RF), 1101 West Tenth Street, RF 221, Indianapolis, IN, 46202, USA

    Kurt Kroenke

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  1. Rebecca N. Adams
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  2. Catherine E. Mosher
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  3. Kevin L. Rand
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  6. Rafat Abonour
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Correspondence to Rebecca N. Adams.

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All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

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

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Adams, R.N., Mosher, C.E., Rand, K.L. et al. The Cancer Loneliness Scale and Cancer-related Negative Social Expectations Scale: development and validation. Qual Life Res 26, 1901–1913 (2017). https://doi.org/10.1007/s11136-017-1518-4

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