Breast Cancer Related Lymphedema Self-Care Scale

Abstract

The Breast Cancer Related Lymphedema Self-Care Scale (BCRL-SCS) is an empirically validated psychometric instrument developed by Zeynep Deveci, Özgül Karayurt, Ozlem Bilik, and Sibel Eyigör (2023) to assess the multifaceted self-management behaviors enacted by women diagnosed with breast cancer-related lymphedema (BCRL). Secondary lymphedema of the upper limb represents one of the most debilitating, chronic survivorship complications following axillary lymph node dissection, sentinel lymph node biopsy, and regional radiotherapy. Despite the well-established necessity of rigorous, lifelong personal intervention to mitigate limb volume exacerbation, clinical practice and behavioral oncology long lacked a standardized, disease-specific measure sensitive to patient adherence and self-care sustainability. The BCRL-SCS was constructed across sequential methodological phases, initiating with a 100-item qualitative and literature-derived pool, refined via expert panel content validation to 41 draft items, and subsequently calibrated through cross-sectional field testing involving adult outpatients receiving specialized lymphatic care in Turkey. Exploratory and confirmatory factor analyses supported a 31-item, four-dimensional structural architecture comprising: (1) Protection, (2) Activity and Disease Process Management, (3) Pressure Management, and (4) Sustainability. The scale utilizes a 4-point Likert response format measuring behavioral frequencies and attitudinal agreement. Psychometric evaluation demonstrated solid internal consistency (overall Cronbach’s $\alpha = 0.82$; subscale alphas ranging from $0.62$ to $0.86$) and excellent split-half reliability (Spearman-Brown coefficient = $0.88$). Confirmatory factor analysis confirmed acceptable to good construct fit ($\chi^2/df = 1.47$, $\text{RMSEA} = 0.048$, $\text{SRMR} = 0.08$, $\text{CFI} = 0.90$). The BCRL-SCS offers oncology nurses, physical therapists, lymphedema specialists, and behavioral researchers a theoretically grounded, operationally efficient tool for profiling baseline self-care deficits, targeting psychoeducational interventions, and monitoring clinical outcomes longitudinally.

Keywords

Breast Cancer Related Lymphedema, BCRL-SCS, Self-Care Practices, Lymphedema Management, Oncology Nursing, Upper Extremity Lymphedema, Patient Adherence, Pressure Management, Chronic Disease Management, Psychometrics

Authors

The scale was developed and psychometrically validated by an interdisciplinary team of clinical nursing researchers and physical medicine and rehabilitation specialists:

• Zeynep Deveci, PhD, RN (Corresponding Author) — Faculty of Health Sciences, Department of Nursing, Pamukkale University, Denizli, Turkey. ORCID: 0000-0002-7383-5135. Email: [email protected].
• Özgül Karayurt, PhD, RN — Faculty of Health Sciences, Department of Nursing, Izmir University of Economics, Izmir, Turkey.
• Ozlem Bilik, PhD, RN — Faculty of Nursing, Department of Surgical Nursing, Dokuz Eylul University, Izmir, Turkey.
• Sibel Eyigör, MD — Faculty of Medicine, Department of Physical Therapy and Rehabilitation, Ege University, Izmir, Turkey.

Purpose

The principal objective of the Breast Cancer Related Lymphedema Self-Care Scale is to quantify, standardize, and systematically evaluate the behavioral performance, adherence patterns, and self-regulatory sustainability of self-care interventions performed by women living with secondary lymphedema following breast cancer treatment. Secondary lymphedema is characterized by the chronic, abnormal accumulation of protein-rich interstitial fluid within the ipsilateral arm, shoulder, breast, or thoracic wall, secondary to surgical disruption, fibrotic obliteration, or radiotherapeutic damage to axillary lymphatic pathways. Because lymphedema is an incurable, progressive condition that exposes patients to recurrent bouts of bacterial cellulitis, lymphangitis, severe functional impairment, irreversible tissue fibrosis, body image disruption, and psychological distress, successful long-term management hinges directly on proactive, daily patient self-care.

Standard therapeutic paradigms, most notably Complete Decongestive Therapy (CDT), comprise an intensive clinician-delivered phase followed by a permanent, lifelong maintenance phase. During the maintenance phase, the patient must assume absolute responsibility for complex health behaviors: donning and maintaining medical compression garments, executing daily self-administered manual lymphatic drainage (MLD), engaging in tailored decongestive exercises, practicing fastidious limb hygiene and skin barrier preservation, vigilantly guarding against cutaneous microtrauma or thermal insults, and monitoring early signals of infectious escalation. Despite clinical education, longitudinal patient adherence to these grueling daily protocols remains notoriously low, with non-adherence estimates ranging from 30% to 75% across survivorship cohorts.

The clinical and scientific purpose of the BCRL-SCS addresses three vital arenas:

• Diagnostic Profiling of Self-Care Deficits: The scale enables clinicians to pinpoint exact dimensions wherein an individual patient exhibits behavioral breakdown—differentiating, for instance, a patient who diligently wears compression sleeves but neglects infection prophylaxis from one who possesses adequate knowledge but fails to sustain practices due to caregiving burdens.
• Interventional Design and Tailored Psychoeducation: By identifying specific self-care barriers and lapses, rehabilitation teams and oncology nurse navigators can construct personalized, high-yield educational pathways and cognitive-behavioral reinforcement plans.
• Empirical Research and Clinical Trials: The tool equips clinical researchers with a sensitive, psychometrically robust instrument to assess the efficacy of novel educational modalities, digital health applications, peer-support structures, and physical rehabilitation programs aimed at enhancing survivorship self-management.

Psychological Construct

The construct assessed by the BCRL-SCS is multidimensional lymphedema self-care behavior, defined as the dynamic, proactive execution of preventive, therapeutic, and maintenance practices aimed at preserving lymphatic function, avoiding limb exacerbation, managing compressive devices, and sustaining continuous self-regulation amidst competing daily demands. Rather than conceptualizing self-care as a monolithic construct, the BCRL-SCS operationalizes it across four distinct yet interrelated behavioral and psychological dimensions:

1. Protection

This dimension captures the operationalized vigilance and avoidance behaviors enacted by the survivor to shield the compromised upper extremity from physiological, thermal, mechanical, and biological insults. The removal or irradiation of axillary lymph nodes irreversibly dampens local immunocompetence, elevating vulnerability to rapid-onset bacterial infections (such as cellulitis or erysipelas) and fluid overload. The Protection construct comprises intentional avoidance of thermal extremes (hot baths, saunas, extreme cold), infection prevention (protecting the limb during manicures, guarding against pet scratches, avoiding insect bites), and strict avoidance of iatrogenic microtrauma (refusing venipunctures, intravenous injections, and blood pressure cuff inflation on the affected arm). Furthermore, it evaluates the avoidance of mechanical constrictions (wearing loose-fitting clothing, avoiding tight jewelry, bracelets, or rings) and the mitigation of sustained mechanical strain (avoiding sleeping in lateral decubitus on the affected limb, refraining from lifting heavy loads, and minimizing repetitive domestic strain such as vigorous window or carpet scrubbing).

2. Activity and Disease Process Management

This subscale encompasses active therapeutic behaviors, self-monitoring routines, and adaptive lifestyle practices geared toward enhancing lymphatic clearance, detecting pathological changes early, and maintaining functional autonomy. Items assess whether the individual performs prescribed remedial exercises, wears protective gloves during domestic or gardening labor, systematically elevates the affected limb above cardiac level during waking intervals, routinely applies skin moisturizers to preserve epidermal barrier integrity, and engages in self-administered manual lymphatic drainage. Beyond physical interventions, this dimension measures the cognitive and disease monitoring components of self-regulation: self-measuring arm circumference at home, attending routine clinic follow-up appointments, carrying emergency topical antimicrobial agents, maintaining acute symptom awareness (recognizing early erythema, local hyperthermia, and acute volume increases), and proactively acquiring verified medical knowledge regarding lymphedema progression.

3. Pressure Management

External compressive counterpressure represents the biomechanical cornerstone of lymphedema stabilization. The Pressure Management dimension isolates practices surrounding the consistent utilization, acquisition, and mechanical maintenance of compression garments and multi-layer short-stretch bandages. It evaluates regular garment usage during exercise and sedentary periods, daily donning of prescribed medical sleeves or gloves, practical knowledge regarding verified commercial suppliers of specialized lymphedema products, and adherence to proper laundering, sanitization, and replacement protocols required to preserve the elasticity and graduated compression gradients of medical textiles.

4. Sustainability

Lymphedema self-management is a permanent, daily endeavor that frequently induces treatment fatigue, psychological resistance, and inter-role conflict. The Sustainability dimension operationalizes the behavioral resilience and long-term durability of self-care actions in the face of psychosocial friction, competing domestic obligations, personal illness, and subjective burden. It captures maladaptive self-care compartmentalization (e.g., executing self-care only when confined to the home environment), prioritization of familial requests or household chores over personal health maintenance, procrastination of therapeutic regimens during periods of systemic illness, and the perception of lymphedema care as an intrusive lifestyle burden.

Theoretical Framework

The conceptual underpinning of the BCRL-SCS is situated at the intersection of classical nursing theory and contemporary behavioral health psychology, drawing primarily from Dorothea Orem’s Self-Care Deficit Nursing Theory, Albert Bandura’s Social Cognitive Theory, and Howard Leventhal’s Common-Sense Model of Self-Regulation.

Orem’s Self-Care Deficit Nursing Theory

Dorothea Orem posited that self-care is a learned, goal-directed behavioral sequence initiated and performed by individuals on their own behalf to maintain life, health, and well-being. Within Orem’s framework, health-deviation self-care requisites arise as a direct consequence of illness, trauma, or medical interventions. Breast cancer-related lymphedema constitutes a classic health-deviation state wherein anatomical disruption generates an imperative for novel self-care agency—the specialized capability, knowledge, and motor skills required to meet self-care requisites. When a patient’s self-care agency is inadequate to satisfy the therapeutic self-care demand (the cumulative self-care required to arrest lymphedema exacerbation), a self-care deficit ensues. The BCRL-SCS was structurally engineered to map this exact deficit frontier, quantifying whether an individual patient possesses and deploys the necessary self-care agency across domestic, occupational, and interpersonal contexts.

Bandura’s Social Cognitive Theory

From social cognitive psychology, the scale incorporates the constructs of self-efficacy, behavioral capability, and outcome expectancies. Effective chronic disease management requires that individuals not only understand what actions are required (declarative knowledge) but also possess task-specific confidence (self-efficacy) to execute those actions amidst real-world barriers. Bandura asserted that self-efficacy directly dictates behavioral perseverance, emotional resiliency, and adherence stability. The BCRL-SCS reflects this theoretical tenet across its Sustainability and Activity and Disease Process Management subscales, which explicitly probe the survivor’s capacity to navigate competing demands, maintain regimens while employed outside the home, and respond proactively to fluctuating physical symptom manifestations.

Leventhal’s Common-Sense Model of Self-Regulation

Leventhal’s model describes how patients construct dynamic cognitive and emotional representations of illness threats (e.g., identity, timeline, consequences, cause, controllability) and select concrete coping behaviors to manage those threats. Women experiencing BCRL must continuously interpret subtle somatic cues (e.g., limb heaviness, tightness, localized warmth) and deploy cognitive and behavioral countermeasures. The BCRL-SCS operationalizes these feedback loops through items evaluating proactive knowledge acquisition, acute symptom identification, and adaptive response execution when clinical indicators of inflammation or lymphatic congestion emerge.

Validity

The psychometric validation of the BCRL-SCS was executed in accordance with established international methodological standards for health measurement scales, encompassing thorough content, construct, and structural validity analyses.

Content Validity

Instrument development originated with an extensive review of oncology, surgical, and lymphatic rehabilitation literature, combined with patient input, producing an initial qualitative item pool of 100 candidate items. This pool was reviewed by a panel of expert clinicians and academic researchers, including oncology nurses, physical therapy specialists, and surgical oncology experts. The panel reviewed each statement for linguistic clarity, conceptual relevance, and clinical applicability. Content validity was statistically assessed using the Item-Content Validity Index (I-CVI) and the Scale-Content Validity Index (S-CVI) following the methodological criteria of Polit and Beck (2006):

• The calculated I-CVI for individual items maintained in the instrument met or exceeded the strict threshold of $0.78$.
• The overall S-CVI exceeded $0.90$, establishing outstanding expert consensus and confirming that the instrument items representatively cover the essential behavioral universe of lymphedema management.

Qualitative revisions and content indices pruned the initial 100 items down to a refined 41-item preliminary draft, which was subsequently piloted with a representative subsample of patients to guarantee semantic transparency and face validity before large-scale administration.

Construct and Structural Validity

Construct validity was formally established through dual exploratory and confirmatory factor analytic workflows using empirical data collected from adult female outpatients diagnosed with breast cancer-related lymphedema at an outpatient clinic in Turkey:

• Exploratory Factor Analysis (EFA): Initial principal component extraction revealed multiple eigenvalues above 1.0, but scree plot inspection, variance distribution, and clinical interpretability demonstrated that a four-factor solution was the most parsimonious and psychometrically pure representation. Items exhibiting weak factor loadings ($< 0.30$) or problematic cross-loadings were systematically eliminated, reducing the scale to 31 definitive items accounting for$43.62%$ of the total cumulative variance.
• Confirmatory Factor Analysis (CFA): The four-factor structure established in EFA was subjected to formal confirmatory modeling. Maximum likelihood estimation demonstrated acceptable to excellent structural fit across classical goodness-of-fit indices: the ratio of chi-square to degrees of freedom was low and robust ($chi^2 = 603.62, df = 408, chi^2/df = 1.47, p < .01$), the Root Mean Square Error of Approximation was excellent ($text{RMSEA} = 0.048$), the Standardized Root Mean Square Residual was acceptable ($text{SRMR} = 0.08$), and incremental fit indices confirmed the stability of the multidimensional construct ($text{CFI} = 0.90, text{IFI} = 0.90, text{NFI} = 0.87, text{TLI} = 0.85$).

Reliability

The BCRL-SCS has demonstrated solid reliability across both classical internal consistency indices and split-half split-sample stability testing:

Internal Consistency

Reliability analysis demonstrated high overall internal consistency, with the total 31-item instrument exhibiting a Cronbach’s alpha coefficient of $\alpha = 0.82$. This index indicates that the scale possesses strong internal homogeneity without redundant content overlap, meeting the standard criteria for both clinical assessment and group-level research applications ($lpha ge 0.80$). Across the four individual factor subdimensions, internal consistency estimates proved acceptable to good:

• Protection: $\alpha = 0.76$ — confirming adequate internal coherence among diverse trauma-, thermal-, and compression-avoidance behaviors.
• Activity and Disease Process Management: $\alpha = 0.86$ — reflecting strong internal consistency across dynamic exercises, hygiene, clinic attendance, and cognitive surveillance routines.
• Pressure Management: $\alpha = 0.62$ — representing an acceptable level of reliability for a concise, four-item specialized clinical domain.
• Sustainability: $\alpha = 0.78$ — demonstrating good reliability across statements measuring psychological burden, prioritization conflicts, and lifestyle friction.

Split-Half Reliability

To further establish instrument stability and control for possible item-order effects, split-half reliability testing was computed. The Spearman-Brown prophecy formula yielded a reliability coefficient of $0.88$, providing robust statistical verification of the scale’s internal structural stability.

Factor Analysis

The structural dimensionality of the BCRL-SCS was established through sequential Exploratory Factor Analysis (EFA) and Confirmatory Factor Analysis (CFA).

Exploratory Factor Analysis (EFA)

Principal Component Analysis (PCA) was conducted on the initial 41 draft items. Although Kaiser’s eigenvalue-greater-than-one criterion initially suggested 12 components, the eigenvalue distribution and scree plot examination revealed a distinct elbow inflection point supporting a four-factor solution. Substantive theoretical interpretability confirmed that a four-factor model provided the most coherent, clinically actionable representation of post-breast cancer self-care. During factor extraction and rotation, items with primary factor loadings lower than $0.30$ (specifically Items 17, 21, 22, 23, 25, 30, 36, and 40) were eliminated. The final 31 items converged onto four factors that collectively accounted for $43.62%$ of the total variance, distributed as follows:

• Factor 1: Protection — 10 items capturing physical vigilance, infection shielding, and avoidance of mechanical/thermal stressors.
• Factor 2: Activity and Disease Process Management — 11 items capturing proactive health behaviors, active exercise, elevation, skin moisturizing, and clinical follow-up.
• Factor 3: Pressure Management — 4 items specifically capturing compression sleeve, bandage, and garment compliance and maintenance.
• Factor 4: Sustainability — 6 items isolating psychosocial fatigue, contextual barriers, and prioritization trade-offs.

Confirmatory Factor Analysis (CFA)

The four-factor measurement model was tested via CFA to verify the structural integrity observed in the exploratory phase. The observed covariance matrix aligned closely with the hypothesized four-factor specification. The fit metrics obtained are summarized below:

Instrument / Measurement Tool

• Test Name: Breast Cancer Related Lymphedema Self-Care Scale (BCRL-SCS)
• Developer / Authors: Zeynep Deveci, Özgül Karayurt, Ozlem Bilik, and Sibel Eyigör (2023)
• Test Type: Patient-Reported Outcome Measure (PROM) / Clinical Inventory / Self-Care Behavioral Questionnaire
• Target Population: Adult female breast cancer survivors diagnosed with secondary lymphedema, spanning Young Adulthood (18–29 years), Thirties (30–39 years), Middle Age (40–64 years), and Older Adulthood (65+ years) across outpatient and ambulatory rehabilitation settings.
• Administration Mode: Self-administered paper-and-pencil, interviewer-administered face-to-face questionnaire, or secure electronic survey platforms.
• Estimated Completion Time: 10 to 15 minutes.
• Number of Items: 31 items distributed across four subscales: Protection (10 items), Activity and Disease Process Management (11 items), Pressure Management (4 items), and Sustainability (6 items).
• Response Formats:
  • Behavioral Frequency Format (Items measuring self-care practices): 4-point Likert scale: 4 = Always, 3 = Often, 2 = Occasionally, 1 = None (Never).
  • Attitudinal Agreement Format (Items measuring sustainability and burden, Items 25–31): 4-point Likert scale: 4 = I completely agree, 3 = I agree, 2 = I don’t agree, 1 = I don’t agree at all.
• Scoring and Directionality:
  • Positively worded adherence items are scored directly ($1$ to $4$), where higher scores indicate superior self-care performance.
  • Items representing risk behaviors, harmful practices, or barriers are reverse-scored (e.g., scoring inverted such that $4=1, 3=2, 2=3, 1=4$). Specifically, items indicating risk-prone actions on the affected limb (e.g., blood pressure measurement, venipunctures, heavy lifting, sleeping on the affected arm, tight jewelry) and sustainability barrier items are reverse-scored.
  • Subscale scores are calculated by summing the item scores within each respective domain. A Total BCRL-SCS Score is obtained by summing all 31 items. Higher composite and subscale scores consistently reflect higher levels of adaptive, protective, and sustainable self-care practices.

Permissions & Fee and Test Year

• Publication Year: 2023 (first published online by SAGE Publications in Clinical Nursing Research).
• Copyright & Permissions: The scale was developed by Zeynep Deveci and colleagues. The scale items and scoring guidelines are published in the scientific peer-reviewed literature for clinical, teaching, and academic research applications. Researchers and healthcare institutions seeking to utilize, translate, or digitally integrate the scale should secure appropriate formal permissions from the corresponding author (Dr. Zeynep Deveci) or through the publisher’s copyright clearance portal (SAGE RightsLink).
• Fee: There is no fee associated with the non-commercial clinical or academic research use of this scale.

References

• Deveci, Z., Karayurt, Ö., Bilik, O., & Eyigör, S. (2023). Development of the Breast Cancer Related Lymphedema Self-Care Scale. Clinical Nursing Research, 32(1), 221–232. https://doi.org/10.1177/1054773820947980
• Orem, D. E. (2001). Nursing: Concepts of practice (6th ed.). Mosby.
• Polit, D. F., & Beck, C. T. (2006). The content validity index: Are you sure you know what’s being reported? Critique and recommendations. Research in Nursing & Health, 29(5), 489–497. https://doi.org/10.1002/nur.20147
• Bandura, A. (1997). Self-efficacy: The exercise of control. W. H. Freeman and Company.
• Ridner, S. H. (2009). The psycho-social impact of lymphedema: A systematic review of literature from 2004 to 2010. Journal of Lymphoedema, 4(1), 35–44.
• Leventhal, H., Phillips, L. A., & Burns, E. (2016). The Common-Sense Model of Self-Regulation (CSM): A dynamic framework for understanding illness self-management. Journal of Behavioral Medicine, 39(6), 935–946. https://doi.org/10.1007/s10865-016-9782-x

13. Items of the Scale (Questionnaire)