The Cancer Loneliness Scale and Cancer-related Negative Social Expectations Scale: development and validation
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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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PROMIS measures have undergone rigorous psychometric testing, and evidence supports their reliability and validity in cancer survivors.
“These NIH-funded measures have undergone rigorous psychometric testing [21], and evidence supports their reliability and validity in cancer survivors [19, 22].”
From Symptom experiences in post-treatment cancer survivors: associations with acceptance and commitment therapy constructs. (2021) · cites this paper as [22]
In Methods, under “PROMIS measures of social and health-related outcomes” (page unavailable), the paper reports rigorous reliability and validity testing of PROMIS measures and generally good internal consistency for the measures used in its cancer-patient sample. It does not establish their validity specifically in cancer survivors, and the physical-health scale initially had poor internal consistency (α=0.27), improving after removal of an item. (LLM, conf=0.85)
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- Authors
- Adams, R. N., Mosher, C. E., Rand, K. L., Hirsh, A. T., Monahan, P. O., Abonour, R., & Kroenke, K.
- Affiliations
- Stanford Medicine (US)
- Indiana University – Purdue University Indianapolis (US)
- Indiana University Indianapolis (US)
- Indiana University School of Medicine (US)
- Regenstrief Institute (US)
- Corresponding author
- Adams, Rebecca N.
- ORCID
- Venue
- Quality of Life Research
- Published
- 2017-02-24
- Volume
- 26
- Issue
- 7
- Pages
- 1901-1913
- ISSN
- 0962-9343 (ISSN-L)
- 1573-2649
- PMC
- PMC5479729
- OpenAlex
- W2589647377
- Cited by
- 49
- References
- 53
- Citations by year
- 2026: 6 · 2025: 12 · 2024: 8 · 2023: 4 · 2022: 9 · 2021: 2 · 2020: 4 · 2019: 2 · 2018: 1 · 2017: 1
- FWCI
- 0.96
- Type
- journal article
- Language
- en
- Open access
- green
- www.ncbi.nlm.nih.gov
- Locations
- Quality of Life Research (publishedVersion)
- PubMed (publishedVersion)
- Europe PMC (PubMed Central) (acceptedVersion)
- PubMed Central (acceptedVersion)
- IUScholarWorks (Indiana University) (submittedVersion)
- Purdue University Indianapolis (Indiana University) (submittedVersion)
- PMC
- Funders
- American Psychological Association
- National Cancer Institute (R25CA117865, K05CA175048, K07CA168883)
- Topics
- Health Sciences › Medicine › Oncology › Cancer survivorship and care
- Social Sciences › Health › Health disparities and outcomes
- Social Sciences › Decision Sciences › Management Science and Operations Research › Psychometric Methodologies and Testing
- Keywords
- loneliness, scale development, psychometric validation, cancer patients, quality of life
- MeSH terms
- Adult, Aged, Aged, 80 and over, Female, Humans, Loneliness, Male, Middle Aged, Neoplasms, Psychometrics, Quality of Life, Reproducibility of Results, Young Adult
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