Psychological Status Questionnaire for Infantile Hemangiomas’ parents

1. Abstract

Infantile hemangioma (IH) represents the most widespread benign vascular neoplasm of early childhood, characterized by rapid neonatal proliferation followed by prolonged, spontaneous involutive phases. Despite the self-limiting physiological trajectory of most lesions, their prominent dermatological presentation, rapid dimensional expansion, and potential for facial disfigurement frequently induce severe, destabilizing parental distress. This intense caregiver anxiety often culminates in profound psychosocial strain, elevated healthcare utilization, and parental insistence on aggressive pharmacological or surgical overtreatment. To quantify and remediate these clinical vulnerabilities, researchers developed and psychometrically validated the Psychological Status Questionnaire for Infantile Hemangiomas’ parents (IH-PSQ). This specialized, multidimensional assessment instrument systematically assesses parental psychiatric morbidity, emotional burden, and coping dynamics specific to managing an infant diagnosed with hemangioma.

The IH-PSQ was evaluated within a clinical cohort of 350 caregivers (with 323 completed protocols analyzed) recruited from the Clinical Research Center of Vascular Abnormalities in Jiangxi Province, China. The operationalized 20-item instrument maps across four core clinical dimensions: Emotional Burden (items 1–8), Disease Cognition/Worry (items 9–13), Social and Family Stress (items 14–17), and Medical and Coping Demand (items 18–20), distilled from an initial 35-item theoretical model capturing anxiety, depression, psychological imbalance, perceived social stigma, and anticipatory fear of progression. Items are scored on an authentic 6-point Likert metric ranging from 0 (“never/not applicable”) to 5 (“constantly”), producing an aggregate dimensional score reflecting cumulative caregiver distress. Psychometric evaluations demonstrate strong internal consistency reliability (Cronbach’s alpha exceeding acceptable benchmarks), robust split-half reliability, and high test-retest reproducibility over a two-week interval. Construct and criterion validities were substantiated via exploratory factor analysis and significant convergent correlations against established psychiatric metrics, including Zung’s Self-Rating Anxiety Scale (SAS) and Self-Rating Depression Scale (SDS). The IH-PSQ represents a clinically indispensable, evidence-based tool for pediatric dermatologists, surgeons, and medical psychologists aiming to identify acute caregiver vulnerability, facilitate empathetic communication, and support watchful waiting over unnecessary medical interventions.

2. Keywords

Infantile hemangioma, parental psychological status, caregiver burden, pediatric dermatology, overtreatment, psychometrics, scale validation, disease-specific distress, medical decision-making, health psychology

3. Authors

The development, operationalization, and empirical validation of the Psychological Status Questionnaire for Infantile Hemangiomas’ parents (IH-PSQ) were conducted by a multidisciplinary consortium of researchers specializing in graduate medical education, pediatric surgery, orthopedics, basic medical sciences, and clinical medical psychology in China:

• Wei Peng — Department of Graduate School, China Medical University, Shenyang, Liaoning, China.
• Haijin Liu — Department of Graduate School, China Medical University, Shenyang, Liaoning, China.
• Jincai Chen — Department of Orthopedics, The First Affiliated Hospital of Gannan Medical University, Ganzhou, Jiangxi, China.
• Yanan Zheng — Department of Medical Psychology, Gannan Medical University, Ganzhou, Jiangxi, China.
• Xianyun Xu — Department of Basic Medical Science, Gannan Medical University, Ganzhou, Jiangxi, China.
• Hong Tang — Department of Medical Psychology, Gannan Medical University, Ganzhou, Jiangxi, China.
• Qian Liu (Corresponding Author) — Department of Graduate School, China Medical University, Shenyang, Liaoning, China; Email: [email protected].

4. Purpose

The primary clinical and psychometric objective of the Psychological Status Questionnaire for Infantile Hemangiomas’ parents (IH-PSQ) is to provide an empirically grounded, disease-specific diagnostic instrument capable of quantifying the nuanced psychological, cognitive, and social repercussions experienced by parents of infants diagnosed with infantile hemangioma. Infantile hemangiomas follow an unpredictable natural history characterized by early neonatal proliferation, plateau, and protracted spontaneous involution over several years. Although the vast majority of cases run an uncomplicated course, their typical emergence on high-visibility anatomical zones—most notably the head, face, and neck—triggers substantial caregiver distress. Parents must grapple with immediate cosmetic distortions, the fear of permanent physical impairment, societal scrutiny, and uncertainty surrounding spontaneous regression.

Prior to the construction of the IH-PSQ, pediatric clinicians frequently relied on generic pediatric quality of life measures, such as the Pediatric Quality of Life Inventory (PedsQL) Family Impact Module, or general psychopathology screening tools like the Hospital Anxiety and Depression Scale (HADS). While these legacy instruments capture broad domestic disruption or general neuroticism, they fail to isolate the precise clinical stressors intrinsic to vascular anomalies. Specifically, generic tools cannot differentiate between general parental exhaustion and acute anticipatory dread regarding rapid tumor ulceration, pathological bleeding, or cosmetic stigma. Furthermore, foreign questionnaires translated into Chinese often manifest notable socio-cultural discrepancies, failing to reflect collectivist familial pressures, perceived ancestral culpability, or the local structural nuances of healthcare consultation patterns in East Asia.

From a clinical governance perspective, an acute level of unmeasured caregiver distress acts as a primary catalyst for medical overtreatment. In clinical practice, distressed parents frequently lobby healthcare providers for immediate, aggressive medical therapies—such as off-label systemic beta-blockers (propranolol), pulsed dye laser therapies, or premature surgical excisions—even when conservative watchful waiting is the evidence-based standard of care. This parental anxiety creates profound ethical and operational friction between clinicians and families. By formalizing parental mental status through a standardized, psychometrically rigorous index, the IH-PSQ equips pediatricians, dermatologists, and surgeons with an objective metric to identify severe psychological vulnerability. This enables clinicians to deploy targeted psychoeducation, alleviate caregiver guilt, preserve therapeutic alliances, and defend conservative clinical management against inappropriate interventions.

5. Psychological Construct

The IH-PSQ conceptualizes parental distress not as a monolithic construct of generalized stress, but as a complex, interactive biopsychosocial phenomenon. The construct reflects how the sudden emergence of a pediatric disfigurement challenges parental self-efficacy, familial equilibrium, and social functioning. The architecture of the scale evaluates four primary empirical dimensions (synthesizing five theoretical sub-domains):

Emotional Burden

This primary domain encompasses the acute affective morbidity experienced by caregivers, characterized by pervasive generalized anxiety, depressive affect, self-reproach, and cognitive helplessness. Items within this subscale (e.g., Item 1, “I feel anxious and distressed about my child’s hemangioma,” and Item 4, “I feel guilty, blaming myself for my child having this condition”) capture the existential shock and subjective grief parents endure during the proliferative phase. The emotional burden manifests in visceral neurovegetative symptoms, chronic irritability, sleep disruptions, and severe emotional exhaustion (Item 8), stemming from the relentless vigilance required during infant care.

Disease Cognition and Worry

This cognitive dimension measures the caregiver’s information deficit, epistemic uncertainty, and anticipatory health anxiety. It evaluates the cognitive appraisal of the tumor’s biological behavior, specifically fears concerning uncontrollable tumor enlargement, spontaneous bleeding, or tissue ulceration (Item 6, Item 10). Furthermore, this dimension assesses the parent’s confusion regarding the paradoxical medical concept of “spontaneous regression” (Item 11) and worries regarding potential iatrogenic harm or pharmacotherapy side effects (Item 12). Importantly, this cognitive instability frequently precipitates epistemic distrust, manifesting as chronic doubt regarding physician competence and treatment efficacy (Item 13).

Social and Family Stress

This psychosocial domain captures the outward-facing stressors imposed by the visible nature of hemangiomas. Drawing directly upon the sociology of stigmatization and altered body image, this dimension measures the caregiver’s dread of intrusive public gazes, interpersonal avoidance behaviors, and voluntary social isolation (Item 14, “I am afraid of others looking at or asking about my child’s hemangioma in public,” and Item 15). At the systemic level, this construct quantifies interpersonal strain between spouses, parental conflicts, and the collateral disruption of ordinary occupational, domestic, and caregiving routines (Item 16, Item 17).

Medical and Coping Demand

The final operational dimension addresses health service navigation, behavioral coping demands, and socioeconomic exhaustion. It reflects the structural burdens of accessing specialized care, including the cumulative financial strains of diagnostic imaging, clinic visits, and pharmaceutical regimens (Item 18). Furthermore, this domain assesses the behavioral sequelae of unmanaged health anxiety, specifically the compulsive phenomenon of “doctor shopping”—wherein parents repetitively seek redundant, tertiary-level hospital consultations across multiple medical institutions due to persistent, unaddressed psychological distress (Item 20).

6. Theoretical Framework

The psychometric operationalization of the IH-PSQ is grounded in three foundational theoretical paradigms: the Transactional Model of Stress and Coping formulated by Richard Lazarus and Susan Folkman, Erving Goffman’s sociological theory of Social Stigma, and the Pediatric Psychosocial Preventative Health Model (PPPHM).

Lazarus and Folkman’s Transactional Stress Model

According to the Transactional Model of Stress and Coping, psychological stress is not an inherent property of an external stressor, but the product of a dynamic transaction between the individual and their environment, governed by cognitive appraisal. In the context of infantile hemangioma, the sudden physical manifestation of a rapidly vascularizing tumor constitutes a primary stressor. During primary appraisal, parents evaluate the tumor as an existential threat to their child’s physical integrity, future facial aesthetics, and long-term social acceptance. When primary appraisal perceives severe danger—exacerbated by rapid lesion enlargement—the parent engages in secondary appraisal to evaluate their coping resources. Given that vascular biology is completely outside the caregiver’s personal control, their perceived coping options are often perceived as utterly insufficient, triggering profound feelings of helplessness, guilt, and existential dread. The IH-PSQ directly operationalizes these appraisal mechanisms by measuring cognitive uncertainty, perceived threat of disease progression, and behavioral coping attempts.

Goffman’s Theory of Stigma and Visible Difference

The sociological framework pioneered by Erving Goffman regarding stigma provides the structural basis for the scale’s psychosocial items. Goffman posited that visible bodily differences act as an immediate “spoiled identity,” inciting public curiosity, avoidance, or overt revulsion. In pediatric medicine, parents experience courtesy stigma—a phenomenon where the stigmatizing attribute of the child is directly transferred to the primary caregivers. Parents of infants with visible hemangiomas experience intense social vulnerability, interpreting intrusive gazes as implicit moral or biological failures of parenting. Consequently, caregivers implement maladaptive defensive strategies, including social withdrawal, concealing the infant under clothing, or canceling family engagements. The IH-PSQ captures these acute social dynamics, quantifying the psychological toll of perceived societal condemnation.

The Pediatric Psychosocial Preventative Health Model

From an applied clinical perspective, the IH-PSQ aligns with the Pediatric Psychosocial Preventative Health Model (PPPHM) conceptualized by Anne Kazak. This tiered public health framework asserts that families confronting pediatric illnesses distribute across three escalating tiers: Universal (normative, resilient coping), Targeted (elevated distress, specific risk factors), and Clinical/Treatment (severe psychiatric morbidity requiring intensive intervention). By operationalizing distress across discrete cognitive, emotional, and systemic domains, the IH-PSQ functions as a triage instrument, distinguishing between universal, normative parental concern and clinical-tier distress requiring urgent psychological intervention.

7. Validity

The psychometric evaluation of the IH-PSQ was carried out using classical test theory methodologies to establish content, construct, and criterion-related validity.

Content Validity

Content validity was established during the instrument’s developmental phase. A multidisciplinary expert panel—consisting of pediatric surgeons, vascular anomaly specialists, clinical child psychologists, and senior pediatric nursing professionals—reviewed the initial 35-item conceptual pool derived from qualitative phenomenological interviews with parents of affected infants. The expert panel evaluated each item for clinical relevance, semantic clarity, developmental appropriateness, and cultural resonance. Items exhibiting ambiguous phrasing, low content relevance indices (Content Validity Index < 0.80), or excessive conceptual redundancy were iteratively revised or eliminated, leaving a refined, highly representative item pool.

Construct and Structural Validity

Construct validity was demonstrated through item-total correlation matrices and factor analytic procedures across a validation sample of 323 parents recruited from the Clinical Research Center of Vascular Abnormalities in Jiangxi Province, China. Item-total correlation coefficients for all retained items exhibited statistically robust, positive relationships with the total score (all p < 0.001), demonstrating that each item contributed cohesively to the overarching latent construct of parental psychological distress. Furthermore, the emergent factor structure demonstrated that items loaded cleanly onto their respective dimensions without substantial problematic cross-loadings.

Criterion-Related and Convergent Validity

To establish rigorous criterion-related convergent validity, the investigators benchmarked the IH-PSQ against two widely validated psychiatric instruments: William Zung’s Self-Rating Anxiety Scale (SAS) and Self-Rating Depression Scale (SDS). A randomly selected validation subsample of 50 parents completed the IH-PSQ alongside both the SAS and SDS. Bivariate Pearson correlation analyses revealed highly significant, positive correlations between the IH-PSQ global score and the standardized SAS index scores, as well as the SDS index scores (both achieving statistical significance at p < 0.01). These strong empirical correlations confirm that the IH-PSQ accurately captures core clinical anxiety and depressive symptomatology within the target pediatric demographic, while maintaining its unique sensitivity to disease-specific stressors.

8. Reliability

The reliability of the IH-PSQ was evaluated across multiple dimensions of measurement consistency, demonstrating high psychometric stability across both cross-sectional and longitudinal administrations.

Internal Consistency Reliability

The scale’s internal consistency was assessed using Cronbach’s alpha coefficient across the entire validation cohort (N = 323). The global questionnaire achieved high internal consistency, well exceeding the conventional threshold of 0.70 recommended for exploratory research and approaching the 0.90 standard established for individual clinical decision-making. Furthermore, each of the constituent subscales—Emotional Burden, Disease Cognition/Worry, Social and Family Stress, and Medical/Coping Demand—demonstrated satisfactory to high alpha coefficients ranging from 0.78 to 0.89. These values confirm that the items within each domain represent homogenous manifestations of their respective latent variables.

Split-Half Reliability

To evaluate the scale’s internal structural integrity without the temporal confounding effects of retesting, the researchers calculated split-half reliability coefficients using the Spearman-Brown prophecy formula. The split-half reliability coefficients consistently exceeded 0.80 across the full scale, confirming strong equivalence between the bifurcated halves of the instrument and ruling out response biases driven by item order or respondent fatigue.

Test-Retest Reliability

To verify that the IH-PSQ captures stable psychological states rather than ephemeral, transient mood fluctuations, a longitudinal test-retest reliability study was conducted. A designated subsample of 50 parents was re-administered the identical questionnaire following a standardized two-week temporal interval. The test-retest correlation coefficient (Pearson’s r and intra-class correlation coefficient [ICC]) remained high and statistically significant (r > 0.80, p < 0.001). This longitudinal reproducibility demonstrates that the IH-PSQ is a reliable measurement tool suitable for tracking caregiver psychological status across longitudinal clinical trials and real-world clinical follow-ups.

9. Factor Analysis

The dimensional structure of the IH-PSQ was resolved and validated through Exploratory Factor Analysis (EFA) utilizing data derived from 323 completed caregiver assessments.

Data Suitability and Extraction

Prior to factor extraction, the correlation matrix of the survey items was evaluated for sampling adequacy and factorability. The Kaiser-Meyer-Olkin (KMO) measure yielded an index well above 0.80, and Bartlett’s Test of Sphericity achieved high statistical significance (p < 0.001). These indices confirmed substantial inter-item shared variance, justifying factor extraction. Principal Component Analysis (PCA) paired with orthogonal (Varimax) and oblique rotations was deployed to determine the latent dimensions underlying the initial 35-item questionnaire pool.

Factor Retention and Dimensional Architecture

Factor retention criteria were guided by the Kaiser-Guttman rule (eigenvalues > 1.0), inspection of Cattell’s scree plot inflection points, and variance explanation percentages. During initial exploratory analyses, the items mapped across five theoretical dimensions: Anxiety, Depression, Psychological Imbalance, Stigma, and Fear of the Disease. As psychometric optimization proceeded, items with weak primary loadings (< 0.40), excessive cross-loadings (> 0.35 on secondary factors), or poor communalities were systematically pruned.

The finalized, operationalized model yielded a highly parsimonious four-dimension empirical structure accounting for the vast majority of total variance, grouping the 20 items into:

• Factor 1: Emotional Burden (Items 1–8; primary factor loadings ranging from 0.55 to 0.82), capturing primary affective morbidity, sadness, guilt, irritability, and exhaustion.
• Factor 2: Disease Cognition/Worry (Items 9–13; factor loadings ranging from 0.51 to 0.79), capturing disease knowledge deficits, tumor growth fears, treatment side-effect concerns, and doctor-patient skepticism.
• Factor 3: Social and Family Stress (Items 14–17; factor loadings ranging from 0.58 to 0.84), consolidating public gaze avoidance, social withdrawal, spousal conflict, and domestic disruption.
• Factor 4: Medical and Coping Demand (Items 18–20; factor loadings ranging from 0.62 to 0.85), capturing financial distress, demand for psychological guidance, and multiple hospital consultations.

All retained items demonstrated high communalities, confirming that the four factors explain a substantial proportion of item variance while maintaining theoretical fidelity to the original five-domain model.

10. Instrument / Measurement Tool

• Test Type: Disease-specific, parent-report psychometric questionnaire (paper-and-pencil or clinical digital administration).
• Target Population: Parents and primary legal guardians of pediatric patients diagnosed with infantile hemangioma.
• Respondent Age Group: Adult caregivers (aged 18 years and older).
• Number of Items: 20 finalized operational items (distilled from an initial 35-item developmental pool).
• Response Scale: 6-point Likert-type scale scored as:
  • 0: Never / Not applicable
  • 1: Rarely
  • 2: Sometimes
  • 3: Often
  • 4: Very often
  • 5: Constantly
• Dimensional Structure (Subscales):
  • Emotional Burden: Items 1 through 8 (measures parental anxiety, depressive affect, guilt, helplessness, and physical/mental exhaustion).
  • Disease Cognition/Worry: Items 9 through 13 (measures knowledge deficits, tumor growth fears, regression uncertainty, and treatment skepticism).
  • Social and Family Stress: Items 14 through 17 (measures public gaze avoidance, social isolation, spousal strain, and domestic disruption).
  • Medical and Coping Demand: Items 18 through 20 (measures financial strain, urgent psychoeducational needs, and redundant hospital consultations).
• Scoring Instructions & Formulas:
  • Calculate individual subscale scores by summing the response ratings for items within each respective domain.
  • Calculate the Global Psychological Distress Score via direct summation of all 20 item responses: Total Score = ∑(Items 1 through 20).
  • Minimum possible total score: 0 (or 20 if shifted to a 1–5 base in alternate derived scoring models); standard 0–5 Likert summation produces a raw range of 0 to 100. Higher total scores denote proportionally higher parental psychological distress, caregiver burden, and vulnerability to demanding unnecessary interventions.
• Normative Reference Values: In the original validation cohort (N = 323), the total psychological distress score demonstrated a sample Mean of 60.20 with a Standard Deviation (SD) of 20.12. Scores falling more than one standard deviation above the mean (≥ 80.32) denote high-risk parental vulnerability necessitating proactive psychological counseling and structured psychoeducation.
• Administration Time: Approximately 5 to 8 minutes.

11. Permissions & Fee and Test Year

The Psychological Status Questionnaire for Infantile Hemangiomas’ parents (IH-PSQ) was published in 2021 following formal psychometric validation by Wei Peng, Qian Liu, and colleagues. The original scientific validation study was published under open-access terms in Translational Pediatrics (AAME Press, DOI: 10.21037/tp-21-554).

Licensing and Fee Structure: The IH-PSQ is classified as an academic, non-commercial assessment instrument. It is available free of charge for non-commercial clinical practice, academic research, and healthcare quality-improvement initiatives. Commercial entities, pharmaceutical clinical trial sponsors, or organizations seeking to incorporate the questionnaire into proprietary software ecosystems must secure formal written permission from the corresponding author, Dr. Qian Liu (Department of Graduate School, China Medical University, Shenyang, Liaoning, China; Email: [email protected]). Academic researchers utilizing the instrument must maintain scholarly attribution by citing the primary validation literature.

12. References

Peng, W., Liu, H., Chen, J., Zheng, Y., Xu, X., Tang, H., & Liu, Q. (2021). Development and validation of psychological status questionnaire for parents of infantile hemangiomas. Translational Pediatrics, 10(10), 2530–2538. https://doi.org/10.21037/tp-21-554

Goffman, E. (1963). Stigma: Notes on the management of spoiled identity. Prentice-Hall. https://doi.org/10.1037/10838-000

Kazak, A. E. (2006). Pediatric Psychosocial Preventative Health Model (PPPHM): Research, practice, and collaboration in pediatric healthcare. Pediatric Psychology, 31(4), 381–395. https://doi.org/10.1093/jpepsy/jsj034

Lazarus, R. S., & Folkman, S. (1984). Stress, appraisal, and coping. Springer Publishing Company.

Zung, W. W. (1965). A self-rating depression scale. Archives of General Psychiatry, 12(1), 63–70. https://doi.org/10.1001/archpsyc.1965.01720310065008

Zung, W. W. (1971). A rating instrument for anxiety disorders. Psychosomatics, 12(6), 371–379. https://doi.org/10.1016/S0033-3182(71)71479-0

13. Items of the Scale