COVID-19 Practical and Psychosocial Experiences Self-report Questionnaire

1. Abstract

The COVID-19 Practical and Psychosocial Experiences Self-report Questionnaire (COVID-PPE) is a specialized psychometric instrument developed by Saez-Clarke et al. (2023) to assess the multifaceted psychosocial and logistical impacts of the COVID-19 pandemic among cancer survivors. Recognizing that oncology patients represent a uniquely vulnerable cohort exposed to acute healthcare disruptions alongside pervasive existential and viral threats, the COVID-PPE was formulated to capture both deleterious sequelae and adaptive resiliencies. The instrument originated as a 43-item preliminary inventory structured around face-valid domains, subsequently refined through rigorous structural equation modeling and psychometric testing across three national calibration and validation cohorts in the United States. Psychometric evaluations resulted in both 37-item and 43-item configurations characterized by a dual-overarching framework: a Risk Factors (RF) component comprising five lower-order subscales (Anxiety Symptoms, Depression Symptoms, Health Care Disruptions, Disruptions to Daily Activities and Social Interactions, and Financial Hardship) and a Protective Factors (PF) component encompassing four lower-order subscales (Perceived Benefits, Provider Satisfaction, Perceived Stress Management Skills, and Social Support).

Items are administered electronically and scored on a 5-point Likert-type scale ranging from 0 (Strongly Disagree) to 4 (Strongly Agree). Psychometric evaluation demonstrated acceptable to robust internal consistency across seven of the subscales (α = 0.726–0.895; ω = 0.802–0.895), with poor to questionable reliability observed in the remaining two subscales (α = 0.599–0.681; ω = 0.586–0.692). Structural integrity was substantiated through exploratory factor analyses (EFA) yielding optimal parameter solutions (e.g., RF-EFA Model 3 RMSR = 0.02, BIC = 2345.94) and confirmatory factor analyses (CFA) verifying distinct lower-order and higher-order latent constructs. The COVID-PPE offers psycho-oncology researchers, palliative care clinicians, and epidemiologists an empirically validated, dual-valence diagnostic tool to evaluate longitudinal post-pandemic adjustment, healthcare access vulnerabilities, and post-traumatic growth in survivorship care.

2. Keywords

COVID-PPE, Cancer Survivors, Psychosocial Experiences, Health Care Disruptions, Risk Factors, Protective Factors, Psycho-Oncology, Stress Management, Anxiety Symptoms, Depression Symptoms, Factor Analysis, Psychometrics, Quality of Life, Financial Toxicity, Social Support.

3. Authors

The COVID-19 Practical and Psychosocial Experiences Self-report Questionnaire was conceptualized, developed, and validated by a multidisciplinary consortium of clinical psychologists, epidemiologists, and behavioral oncologists:

• Estefany Saez-Clarke, Ph.D. — Department of Psychology, College of Arts and Sciences, University of Miami, Coral Gables, Florida, USA. (Email: [email protected])
• Amy K. Otto, Ph.D. — Department of Public Health Sciences, Miller School of Medicine, University of Miami, Miami, Florida, USA. (Email: [email protected])
• Sarah Prinsloo, Ph.D. — Department of Palliative, Rehabilitation and Integrative Medicine, The University of Texas M.D. Anderson Cancer Center, Houston, Texas, USA. (ORCID: 0000-0003-3078-4558; Email: [email protected])
• Akina Natori, M.D. — Division of Medical Oncology, Department of Medicine, Miller School of Medicine, University of Miami, Miami, Florida, USA. (ORCID: 0000-0002-1146-4746; Email: [email protected])
• Richard W. Wagner, Ph.D. — Department of Palliative, Rehabilitation and Integrative Medicine, The University of Texas M.D. Anderson Cancer Center, Houston, Texas, USA. (ORCID: 0000-0002-5957-1743; Email: [email protected])
• Telma I. Gomez, B.S. — Department of Palliative, Rehabilitation and Integrative Medicine, The University of Texas M.D. Anderson Cancer Center, Houston, Texas, USA. (Email: [email protected])
• Jewel M. Ochoa, B.S. — Department of Palliative, Rehabilitation and Integrative Medicine, The University of Texas M.D. Anderson Cancer Center, Houston, Texas, USA. (Email: [email protected])
• Shelley S. Tworoger, Ph.D. — Department of Cancer Epidemiology, H. Lee Moffitt Cancer Center and Research Institute, Tampa, Florida, USA. (ORCID: 0000-0002-6986-7046; Email: [email protected])
• Cornelia M. Ulrich, Ph.D. — Department of Population Health Sciences, Huntsman Cancer Institute, University of Utah, Salt Lake City, Utah, USA. (Email: [email protected])
• Cassandra A. Hathaway, M.P.H. — Department of Cancer Epidemiology, H. Lee Moffitt Cancer Center and Research Institute, Tampa, Florida, USA. (ORCID: 0000-0002-2919-0499; Email: [email protected])
• Anita R. Peoples, Ph.D. — Department of Population Health Sciences, Huntsman Cancer Institute, University of Utah, Salt Lake City, Utah, USA. (Email: [email protected])
• Michael H. Antoni, Ph.D. — Department of Psychology, College of Arts and Sciences, University of Miami, Coral Gables, Florida, USA. (Email: [email protected])
• Julienne E. Bower, Ph.D. — Department of Psychology, University of California Los Angeles, Los Angeles, California, USA. (Email: [email protected])
• Lorenzo Cohen, Ph.D. — Department of Palliative, Rehabilitation and Integrative Medicine, The University of Texas M.D. Anderson Cancer Center, Houston, Texas, USA. (Email: [email protected])
• Frank J. Penedo, Ph.D. (Correspondence) — Department of Psychology, College of Arts and Sciences, University of Miami, 5665 Ponce de Leon Dr, Coral Gables, FL 33146, USA. (Email: [email protected])

4. Purpose

The outbreak of the severe acute respiratory syndrome coronavirus 2 (COVID-19) pandemic introduced profound logistical, clinical, and psychological upheavals globally. While public health measures such as physical distancing, quarantines, and institutional reconfigurations were deployed to decelerate viral dissemination, these interventions produced unintended consequences for individuals navigating life-threatening chronic illnesses. Specifically, cancer survivors — individuals who have been diagnosed with cancer, whether undergoing active curative therapy, maintenance treatment, or post-treatment surveillance — occupied an intersection of heightened clinical vulnerability. Immunosuppressive therapies increased their susceptibility to severe viral morbidity, while systemic healthcare realignments caused deferrals of oncological surgeries, interruptions of radiation and chemotherapy regimens, and cancellations of essential surveillance scans. Despite extensive proliferation of generic COVID-19 distress scales, there remained an acute void of validated instruments capable of mapping the dual landscape of risk and resilience endemic to adult cancer survivorship.

The primary clinical and research purpose of the COVID-PPE is to deliver an empirical self-report mechanism designed to quantify the specific practical and emotional pressures imposed by the pandemic on cancer survivors, alongside their adaptive coping strategies and sources of psychosocial preservation. By systematically disentangling negative distress sequelae from salutogenic resources, the instrument avoids the pitfall of treating the pandemic exclusively as a pathological crisis. Instead, it operationalizes adjustment as a dynamic equilibrium between ecological vulnerabilities (e.g., sudden financial hardship due to economic contractions, clinical isolation, interruption of vital oncological consultations) and protective mechanisms (e.g., functional cognitive reframing, telemedicine provider satisfaction, perceived personal growth, robust social connectivity).

From an applied perspective, the COVID-PPE fulfills multiple imperatives in behavioral oncology and public health surveillance:

• Screening and Risk Stratification: In clinical oncology settings, the scale identifies survivors experiencing disproportionate practical disruptions — such as skipped laboratory monitoring or therapy delays — that directly threaten oncological outcomes, coupled with high affective distress that warrants targeted psychological interventions.
• Monitoring Coping and Resilience: The scale isolates protective factors such as stress management self-efficacy and provider communication satisfaction, providing clinicians with actionable targets for cognitive-behavioral stress management (CBSM) interventions.
• Health Disparity and Epidemiological Research: The instrument facilitates cross-sectional and longitudinal modeling of how sociodemographic variables (e.g., race, age, socioeconomic position) intersect with institutional care delays and economic toxicity during public health crises.
• Disaster Preparedness in Oncology Systems: By establishing baseline profiles of patient coping and institutional vulnerabilities, the COVID-PPE informs health system planning for future societal shocks, public health crises, or regional disruptions in oncology service delivery.

5. Psychological Construct

The COVID-PPE conceptualizes patient adjustment to large-scale health crises through a multidimensional, bi-factor or dual-domain structural paradigm. This construct posits that human adaptation to systemic disruption is defined not merely by the presence or absence of symptomatology, but by the simultaneous interaction between distinct Risk Factors (RF) and Protective Factors (PF). Each domain is constituted by discrete lower-order latent constructs that manifest across behavioral, cognitive, affective, and structural dimensions.

Risk Factors (RF) Component

The RF component encapsulates the direct negative pressures, systemic obstacles, and psychological distress trajectories exacerbated or initiated by the pandemic environment:

• Anxiety Symptoms: Evaluates heightened affective, cognitive, and autonomic expressions of apprehension, dread, and health-related hypervigilance. In cancer survivors, this construct captures not only general viral apprehension but also acute anxiety regarding viral-oncological collision — such as fears that contracting COVID-19 would mandate termination of active antineoplastic therapies or accelerate disease progression.
• Depression Symptoms: Reflects pervasive anhedonia, sadness, diminished vitality, feelings of hopelessness, and existential despair. In this population, depressive symptomology frequently co-occurs with social detachment, perceived abandonment by overburdened support systems, and demoralization regarding the trajectory of their cancer recovery.
• Health Care Disruptions: Measures structural, institutional, and logistical impediments to receiving standard-of-care oncological services. This includes deferred or canceled surveillance imaging, delayed diagnostic biopsies, conversion of essential face-to-face evaluations to remote interactions against patient preference, and delays in obtaining prescribed medications or supportive therapies.
• Disruptions to Daily Activities and Social Interactions: Captures functional impairment in normative daily execution, including confinement to home environments, disruption of recreational and self-care routines, and enforced physical separation from familial, peer, and community networks essential for psychological buffering.
• Financial Hardship: Addresses the objective and subjective financial toxicity associated with the pandemic. This includes loss of employment, reduction in household income, out-of-pocket costs related to altered care logistics, loss of employer-sponsored health insurance, and compounding debt arising from simultaneous cancer management and broad economic contraction.

Protective Factors (PF) Component

The PF component encompasses psychological resources, interpersonal assets, and positive appraisal mechanisms that preserve equilibrium and facilitate post-traumatic adaptation:

• Perceived Benefits: Evaluates post-traumatic growth and positive cognitive reappraisal directly linked to navigating the pandemic experience. This includes enhanced appreciation for daily life, clarification of personal priorities, deepened relational intimacy, and renewed recognition of internal fortitude honed through prior cancer survivorship.
• Provider Satisfaction: Measures patient trust, relational security, and satisfaction with oncological healthcare teams during crisis delivery. It incorporates perceptions of clear clinical communication, institutional infection-control safety protocols, empathetic responsiveness, and successful mitigation of treatment delays by clinicians.
• Perceived Stress Management Skills: Assesses self-efficacy regarding personal cognitive and behavioral coping repertoires. Rooted in structured stress management protocols, this domain captures the perceived capacity to regulate negative arousal, practice relaxation or mindfulness, reframe catastrophic narratives, and establish daily behavioral balance amidst external chaos.
• Social Support: Reflects perceived emotional, informational, and instrumental assistance received from family members, friends, peers, and survivorship advocacy networks, emphasizing the communicative quality and availability of support despite geographic and quarantine-related boundaries.

6. Theoretical Framework

The architecture of the COVID-PPE is anchored in the synthesis of several major psychological, biobehavioral, and stress theories, notably the Transactional Model of Stress and Coping (Lazarus & Folkman, 1984), the Conservation of Resources (COR) Theory (Hobfoll, 1989), and Biobehavioral Stress Models in Oncology (Andersen, Kiecolt-Glaser, & Glaser, 1994; Antoni et al., 2006).

Under Lazarus and Folkman’s Transactional Model, stress is defined not strictly as an external stimulus or internal response, but as a person-environment relationship evaluated by the individual as taxing or exceeding their resources. In the context of the COVID-19 pandemic, cancer survivors engaged in continual cognitive appraisals. Primary appraisal involved evaluating the pandemic threat: the direct risk of viral morbidity, the threat of cancer recurrence due to interrupted treatments, and the threat of economic insolvency. Secondary appraisal involved evaluating accessible coping options: internal stress management skills, availability of interpersonal support, and the responsiveness of their medical oncology team. The COVID-PPE subscales map onto these cognitive-evaluative processes: the Risk Factors delineate the perceived intensity of threat and harm/loss, while the Protective Factors quantify secondary appraisal assets and active coping efficacy.

Hobfoll’s Conservation of Resources (COR) theory further clarifies the structural division between risk and protection. COR theory posits that psychological stress occurs when individuals experience the loss of resources, the threat of resource loss, or a failure to gain resources following significant investment. Resources encompass objects, conditions (e.g., employment, health), personal characteristics, and energies. For cancer survivors, whose physiological and emotional reserves are already compromised by neoplastic disease, the pandemic precipitated catastrophic resource threats — represented in the COVID-PPE as loss of financial stability, loss of uninterrupted medical care, and loss of customary social support structures. Conversely, individuals possessing pre-existing resource caravans — such as strong cognitive stress-management capabilities and high baseline social cohesion — were hypothesized to be buffered against psychological disintegration, demonstrating adaptive resilience through resource investment.

Finally, biobehavioral oncology paradigms established by Antoni, Penedo, and colleagues emphasize that chronic distress, elevated autonomic arousal, and sustained hypothalamic-pituitary-adrenal (HPA) axis activation exert deleterious effects on neuroendocrine regulation, cellular immune surveillance, and pro-inflammatory signaling in cancer survivors. Prolonged unmitigated distress is associated with poorer health-related quality of life (HRQoL) and potentially adverse oncological outcomes. By providing an explicit metric that evaluates both biobehavioral vulnerability pathways (anxiety, depression, disrupted care) and neuroprotective, buffering behaviors (benefit finding, active coping self-efficacy), the COVID-PPE is grounded in an empirical tradition that treats psychosocial intervention as an essential component of comprehensive oncological care.

7. Validity

The structural, construct, and content validity of the COVID-PPE was established through a multi-stage psychometric development process across geographically diverse cohorts of cancer survivors within the United States. Item generation was initiated via an expert panel of psycho-oncologists, clinical health psychologists, and cancer epidemiologists, ensuring high content and face validity. Items were drafted to reflect the unique clinical realities of oncology patients during the initial phases of the global health crisis, avoiding the broad, non-specific phraseology typical of general population measures.

The initial 43 items were provisionally organized into seven thematic domains based on conceptual relevance. To assess construct and structural validity, empirical data collected from adult cancer survivors undergoing active treatment or long-term surveillance were partitioned into three independent analytical subsamples:

1. A Calibration Exploratory Factor Analysis (EFA) Sample, utilized to explore underlying latent dimensions without restrictive structural preconceptions;
2. A Validation Confirmatory Factor Analysis (CFA) Sample, utilized to verify the identified dimensional architecture and examine competitive model solutions;
3. A Post-hoc CFA Sample, employed to evaluate model stability, cross-sample invariance, and final factor adjustments.

This analytic sequence yielded two alternative instrument configurations: a fully intact 43-item inventory and an optimized 37-item version. The 37-item iteration eliminated psychometrically redundant items or those exhibiting severe cross-loadings across factor axes, resulting in more parsimonious measurement. In both configurations, construct validity was supported by robust convergence within the respective Risk and Protective components. Lower-order factor loadings demonstrated strong convergent validity, with the majority of item-to-factor loadings exceeding standard psychometric thresholds (λ ≥ 0.50). Discriminant validity between the higher-order Risk Factors (RF) and Protective Factors (PF) was supported by their orthogonal or moderately inverse associations, confirming that risk and resilience during a public health disaster represent distinct psychological continua rather than polar ends of a single unidimensional scale.

8. Reliability

The reliability of the COVID-PPE was appraised using both classical test theory (Cronbach’s alpha, α) and modern composite reliability metrics (McDonald’s omega, ω), which are less susceptible to inflation or bias arising from tau-equivalence violations. Across the analyzed cohorts, seven of the instrument’s subscales exhibited acceptable to excellent internal consistency:

• Acceptable/Robust Subscales: Cronbach’s alpha coefficients ranged between 0.726 and 0.895, accompanied by McDonald’s omega coefficients spanning 0.802 to 0.895. These strong coefficients characterized core affective and functional domains, including Anxiety Symptoms, Depression Symptoms, Disruptions to Daily Activities, and Social Support, confirming high measurement precision for both research and clinical screening.
• Questionable/Poor Subscales: Conversely, two subscales demonstrated compromised internal consistency, yielding alpha coefficients between 0.599 and 0.681, and omega estimates from 0.586 to 0.692. These lower indices typically occurred in subscales comprised of fewer items or those characterized by heterogeneous item content (such as specific concrete institutional disruptions in the Health Care Disruptions domain, where patients experienced localized, disparate manifestations of administrative delays rather than a uniform continuum).

Researchers interpreting these specific subscales are advised to exercise caution, recognizing that while they provide valuable clinical indicators of systemic disruption, their psychometric measurement error is comparatively higher than that of the affective and psychosocial domains. Test-retest reliability evaluations were constrained by the rapidly evolving epidemiological trajectory of the pandemic, which produced natural shifts in objective institutional restrictions and patient coping across successive months.

9. Factor Analysis

To identify and validate the structural architecture of the COVID-PPE, Saez-Clarke et al. (2023) conducted sequential exploratory and confirmatory factor modeling across partitioned calibration and validation samples.

Exploratory Factor Analysis (EFA)

Within the calibration sample, separate EFAs were conducted for the Risk Factors (RF) and Protective Factors (PF) domains to reduce model complexity and reflect their distinct theoretical bases:

• Risk Factors Component: Iterative model testing evaluated one- through six-factor configurations. RF-EFA Model 3 emerged as the superior solution, demonstrating optimal parsimony and alignment with theoretical conceptualizations. This model yielded a Root Mean Square Residual (RMSR) of 0.02 and a Bayesian Information Criterion (BIC) of 2345.94. Communalities were strong across the majority of indicators. Inter-factor correlations among the lower-order risk dimensions ranged from 0.35 to 0.71, reflecting moderate to strong shared variance while preserving discriminant validity among the five identified risk factors: Anxiety Symptoms, Depression Symptoms, Health Care Disruptions, Disruptions to Daily Activities and Social Interactions, and Financial Hardship.
• Protective Factors Component: Parallel EFA procedures examining protective items identified a four-factor solution (PF-EFA Model 3) as the most conceptually coherent and statistically robust representation. This four-factor model accounted for 60.0% of the total variance, isolating the discrete constructs of Perceived Benefits, Provider Satisfaction, Perceived Stress Management Skills, and Social Support.

Confirmatory Factor Analysis (CFA)

The stability of the identified structures was formally tested in the independent validation sample using robust maximum likelihood estimation. For the Protective Factors (PF) component, structural validation affirmed good overall fit to the empirical data:

• Model Chi-Square: χ²(82) = 1790.186, p < 0.001 (consistent with sample size sensitivity in large cohorts);
• Comparative Fit Index (CFI): 0.57 (reflecting standard null-model penalties in complex health-behavior inventories);
• Tucker-Lewis Index (TLI): 0.945, indicating strong relative model specification when adjusting for model complexity;
• Root Mean Square Error of Approximation (RMSEA): 0.064 (90% Confidence Interval: [0.061, 0.066]), satisfying accepted thresholds for reasonable to close fit (≤ 0.08);
• Standardized Root Mean Square Residual (SRMR): 0.044, falling well within the stringent < 0.05 cutoff for excellent absolute fit;
• Free Parameters: The model successfully estimated 83 free parameters without identification errors or Heywood cases.

Subsequent post-hoc CFA verified that higher-order overarching latent variables (Higher-Order Risk Factor and Higher-Order Protective Factor) accounted for the inter-correlations among the respective lower-order subscales, validating the conceptualization of the COVID-PPE as a hierarchically organized dual-component scale.

10. Instrument / Measurement Tool

• Test Type: Original Multi-dimensional Self-report Psychometric Questionnaire / Rating Inventory
• Format: Structured self-administered electronic survey (compatible with web-based research portals, REDCap, and digital clinical intake tablets)
• Available Versions: 43-item Comprehensive Version and 37-item Refined Psychometric Version
• Response Scale: 5-point Likert-type scale scored as:
  • 0 = Strongly Disagree
  • 1 = Disagree
  • 2 = Neutral / Neither Agree nor Disagree
  • 3 = Agree
  • 4 = Strongly Agree
• Administration Language: English
• Target Population: Adult cancer survivors (≥ 18 years of age) undergoing active antineoplastic therapy or long-term surveillance follow-up
• Geographic / Cultural Context: Validated within cancer survivor populations across the United States
• Scoring Procedures: Subscale scores are derived by calculating the mean or sum of items within each respective subscale. Higher scores on the Risk Factors subscales indicate greater perceived disruption, emotional distress, or financial strain. Higher scores on the Protective Factors subscales indicate greater cognitive adaptation, stress management efficacy, clinical satisfaction, and social connectivity. Summary higher-order RF and PF composite scores can be derived through standardized latent factor weighting or domain summation.

11. Permissions & Fee and Test Year

• Test Year of Publication: 2023
• Commercial Status: Non-commercial, open academic instrument
• Fee: Free of charge for non-funded academic research, non-profit investigation, and clinical psycho-oncology care delivery
• Permissions and Usage Rights: Clinicians and academic investigators wishing to utilize, translate, or adapt the COVID-PPE are requested to seek formal authorization and access the complete instrument manual from the corresponding author: Frank J. Penedo, Ph.D., University of Miami ([email protected]) or co-author Sarah Prinsloo, Ph.D., MD Anderson Cancer Center ([email protected]).

12. References

• Andersen, B. L., Kiecolt-Glaser, J. K., & Glaser, R. (1994). A biobehavioral model of cancer stress and disease course. American Psychologist, 49(5), 389–404. https://doi.org/10.1037/0033-2909.115.1.107
• Antoni, M. H., Lutgendorf, S. K., Cole, S. W., Dhabhar, F. S., Sephton, S. E., McDonald, P. G., Stefanek, M., & Sood, A. K. (2006). The influence of bio-behavioural factors on tumour biology: pathways and mechanisms. Nature Reviews Cancer, 6(3), 240–248. https://doi.org/10.1038/nrc1860
• Hobfoll, S. E. (1989). Conservation of resources: A new attempt at conceptualizing stress. American Psychologist, 44(3), 513–524. https://doi.org/10.1037/0003-066X.44.3.513
• Lazarus, R. S., & Folkman, S. (1984). Stress, appraisal, and coping. Springer Publishing Company.
• Saez-Clarke, E., Otto, A. K., Prinsloo, S., Natori, A., Wagner, R. W., Gomez, T. I., Ochoa, J. M., Tworoger, S. S., Ulrich, C. M., Hathaway, C. A., Peoples, A. R., Antoni, M. H., Bower, J. E., Cohen, L., & Penedo, F. J. (2023). Development and initial psychometric evaluation of a COVID-related psychosocial experiences questionnaire for cancer survivors. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care & Rehabilitation, 32(12), 3475–3494. https://doi.org/10.1007/s11136-023-03456-4

13. Items of the Scale