Cancer Support Source – Caregiver

Abstract

The CancerSupportSource-Caregiver (CSS-Caregiver), introduced by Zaleta et al. (2023), is a specialized, 18-item instrument developed for the distress screening, referral, and support of cancer caregivers. This measure represents the refinement and finalization of initial validation work conducted by Shaffer et al. (2019), aiming to provide a comprehensive assessment of unmet needs among individuals caring for those with cancer.

The CSS-Caregiver serves a crucial dual function: offering a multidimensional assessment of caregiver distress and concurrently screening for the risk of clinically significant mental health issues, specifically depression and anxiety. Validation studies, conducted on a U.S. sample of caregivers, confirmed its robust psychometric properties, including strong internal reliability (demonstrated by a Cronbach’s alpha of 0.92) and strong validity across convergent, discriminant, and known-groups measures. Its utility lies in its potential implementation within clinical support programs to facilitate rapid needs assessment and improve caregiver well-being across the care continuum.

Keywords

Anxiety, Cancer Caregivers, Caregiving Tasks, Depression, Distress, Emotional Well-Being, Finances, Healthy Lifestyle, Known-Groups Validity, Needs Assessment, Neoplasms, Patient Well-Being, Screening Measure, Stress and Coping Measures.

Authors

Zaleta, Alexandra K., Miller, Melissa F., Fortune, Erica E., Olson, Julie S., Rogers, Kimberly Papay, Hendershot, Kelly, Ash-Lee, Susan.

Purpose

The fundamental purpose of the CSS-Caregiver is to provide a standardized, multidimensional assessment tool for quantifying the level of distress experienced by cancer caregivers. Unlike general distress measures, this instrument is specifically tailored to identify concrete, unmet needs related to the demands and burden of the caregiving role.

The measure is designed for practical implementation within clinical settings as part of a comprehensive distress screening, referral, and follow-up program. By rapidly assessing needs and identifying individuals at risk for clinically significant psychopathology, such as depression or anxiety, the CSS-Caregiver facilitates timely intervention and resource allocation, ultimately seeking to enhance caregiver well-being across the care continuum.

Construct

The CSS-Caregiver primarily measures Caregiver Distress, which is conceptualized as a multidimensional construct encompassing psychological, physical, and practical challenges faced by individuals supporting cancer patients. The measure is structured around five core factors identified through Factor Analysis: Emotional Well-Being, Patient Well-Being, Caregiving Tasks, Finances, and Healthy Lifestyle.

In addition to these five domains of distress, the instrument includes specific subscales tailored to screen for risk of clinically significant psychopathology: Depression Risk and Anxiety Risk. This structural composition allows clinicians to move beyond a simple total distress score to identify the specific domains contributing to the caregiver’s overall burden and risk profile.

Validity

The psychometric evaluation of the CSS-Caregiver provided substantial evidence supporting its construct validity across several statistical measures, confirming its ability to accurately measure the intended constructs of caregiver distress and clinical risk.

• Convergent Validity: Strong convergent validity was demonstrated through Pearson correlations (r ≥ 0.50) between the CSS-Caregiver factors and established validation measures assessing related constructs such as depression, anxiety, fatigue, and health impact, indicating that the scale measures constructs theoretically expected to be related.

• Discriminant Validity: Support for discriminant validity was established by showing weak correlations (rs ranging from -0.22 to -0.12) between the CSS-Caregiver total score and factors and caregiver self-esteem. This suggests the measure is distinct from constructs it is not intended to assess.

• Known-Groups Validity: Several comparisons based on the total distress score across different demographic and caregiving variables (e.g., age, gender, income level, and caregiving hours) supported known-groups validity, with observed directional differences aligning consistently with theoretical hypotheses.

The instrument also exhibited high clinical utility in identifying risk. For depression screening, a cutoff score of ≥3 (out of a maximum of 8) yielded high sensitivity (94.5%–95.0%) and adequate specificity (63.0%–66.4%). For anxiety screening, a cutoff score of ≥4 resulted in high sensitivity (86.7%–90.6%) and adequate specificity (66.0%–68.0%).

Reliability

The CSS-Caregiver demonstrated high internal consistency, confirming that the items within the scale measure the same underlying construct reliably. The Cronbach’s alpha coefficient for the entire 18-item measure was reported as 0.92, indicating excellent reliability.

Additionally, the measure showed strong stability over time. The Test-Retest Reliability for the core 18-item instrument was 0.85. When including the optional item regarding tobacco and substance use, the test-retest reliability was 0.86. Reliability among individual factors was also robust, with all Intraclass Correlation Coefficients (ICCs) equal to or greater than 0.72.

Factor Analysis

The development of the CSS-Caregiver involved rigorous statistical validation using Factor Analysis to confirm the internal structure of the scale and ensure construct purity.

• Exploratory Factor Analysis (EFA): The EFA resulted in the retention of eighteen core items, ensuring that at least two items loaded cleanly onto each identified factor. This analysis confirmed the presence of the five-factor structure (Emotional well-being, Patient well-being, Caregiving tasks, Finances, and Healthy lifestyle) and accounted for 67% of the total model variance. An additional item pertaining to tobacco and substance use was retained for its clinical significance in risk assessment, despite not loading onto any of the five primary factors.

• Confirmatory Factor Analysis (CFA): The five-factor structure identified by the EFA was confirmed using CFA. The fit indices demonstrated acceptable to good model fit, specifically: RMSEA = 0.07 [90% CI = 0.06–0.09], SRMR = 0.06, CFI = 0.94, TLI = 0.93, and χ2 = 216.12. These results provide strong empirical support for the hypothesized underlying structure of the CSS-Caregiver.

Instrument

Test Type: Original Screener

Format: Participants rate their level of concern for each item using a 5-point Likert scale (0 = Not at all, 1 = Slightly, 2 = Moderately, 3 = Seriously, and 4 = Very seriously). A Total Distress Score is calculated by summing the item ratings, with procedures in place to handle missing data (using the mean of available items). Specific risk scores are derived separately: the Depression Risk Score is calculated by summing two specific items, and the Anxiety Risk Score is calculated by summing another two specific items.

Language Available: English

Population Group: Human (Male and Female)

Age Group: Adulthood (18 years and older)

Population Details: The measure was validated using a sample of caregivers to individuals with cancer, located within the United States.

Test Methodology: The methodology involved various psychometric evaluations, including Test Validity (Convergent Validity, Discriminant Validity, Known-Groups Validity, Sensitivity, and Specificity), Test Reliability (Internal Consistency, Test-Retest Reliability), and Factor Analysis (Confirmatory Factor Analysis, Exploratory Factor Analysis).

Keywords

Caregiver Burden, Caregivers, Distress, Needs Assessment, Neoplasms, Screening Tests, Stress and Coping Measures, Caregiving, Psychometrics, Test Reliability.

Authors

Author ORCID Identifiers:

• Zaleta, Alexandra K.: http://orcid.org/0000-0002-8589-4722

• Miller, Melissa F.: http://orcid.org/0000-0001-8288-2681

• Fortune, Erica E.: http://orcid.org/0000-0002-6748-8229

• Olson, Julie S.: http://orcid.org/0000-0002-4669-3880

• Rogers, Kimberly Papay: http://orcid.org/0000-0003-4740-1269

• Hendershot, Kelly: http://orcid.org/0000-0001-5730-4935

• Ash-Lee, Susan: http://orcid.org/0000-0003-4202-4249

Affiliation Email addresses:

• Zaleta, Alexandra K.: Cancer Support Community Research and Training Institute, [email protected]

• Miller, Melissa F.: Cancer Support Community Research and Training Institute

• Fortune, Erica E.: Cancer Support Community Research and Training Institute

• Olson, Julie S.: Cancer Support Community Research and Training Institute

• Rogers, Kimberly Papay: Cancer Support Community Research and Training Institute

• Hendershot, Kelly: Cancer Support Community

• Ash-Lee, Susan: Cancer Support Community

Correspondence Address:

Zaleta, Alexandra K.: Cancer Support Community, 520 Walnut Street, Suite 1170, Philadelphia, Pennsylvania, United States, 19106, [email protected]

Permissions & Fee and Test Year

Permissions: Contact Corresponding Author

Commercial Use: No

Fee: No

Test Year: 2023

Reference’s

Zaleta, A. K., Miller, M. F., Fortune, E. E., Olson, J. S., Rogers, K. P., Hendershot, K., & Ash‐Lee, S. (2023). CancerSupportSourceTM‐Caregiver: Development of a distress screening measure for cancer caregivers. Psycho-Oncology, 32(3), 418–428. https://doi.org/10.1002/pon.6092

Items of the Cancer Support Source-Caregiver

IMPORTANT: The following scale items must be preserved in their original language and must not be changed in any way.

The CancerSupportSource™‐Caregiver (CSS‐Caregiver) consists of 18 items, along with one additional screening item that assesses tobacco and substance use. The measure is structured around five main factors:

• Emotional well‐being

• Patient well‐being

• Caregiving tasks

• Finances

• Healthy lifestyle

Additionally, the instrument includes subscales for:

• Depression risk

• Anxiety risk

No specific items are provided in the provided text, however, they are available in the source reference: Zaleta et al. (2023), Table 2, Page 423.