Breast Cancer Related Lymphedema Self-Care Scale

Abstract

The Breast Cancer Related Lymphedema Self-Care Scale (BCRL-SCS) was developed by Deveci et al. (2023) to address a critical measurement gap concerning self-care practices specifically among women diagnosed with breast cancer-related lymphedema (BCRL). The need for this specialized measure arose because existing instruments often failed to comprehensively evaluate the specific self-care behaviors required by lymphedema patients.

The development process was rigorous, beginning with an extensive literature review that generated an initial pool of 100 items. Following expert review for content validity, the scale was refined to a 41-item draft. The measure was then piloted and administered to women with BCRL attending an outpatient lymphedema clinic in Turkey. The final psychometric structure was established using robust statistical methods, including Exploratory Factor Analysis (EFA) and Confirmatory Factor Analysis (CFA), resulting in a final 31-item instrument organized into a clear four-factor structure. Comprehensive reports confirm the scale’s high reliability and validity profiles.

Keywords

Activity and Disease Process Management, Breast Cancer Related Lymphedema, Patient Self-Care, Pressure Management, Protection, Self-Care Practices, Sustainability, Psychometric Validation.

Authors

Deveci, Zeynep, Karayurt, Özgül, Bilik, Ozlem, Eyigör, Sibel.

Purpose

The primary purpose of the Breast Cancer Related Lymphedema Self-Care Scale is to provide a detailed and quantifiable assessment of the self-care practices and adherence levels reported by women managing Breast Cancer Related Lymphedema (BCRL). This assessment aims to provide a comprehensive understanding of how these individuals implement critical self-care interventions to manage their condition.

The development of this tool was motivated by the clinical need for an instrument that can accurately capture the nuances of self-management behaviors, enabling healthcare providers and researchers to evaluate compliance, identify barriers to care, and plan targeted interventions to improve long-term patient outcomes.

Construct

The BCRL-SCS measures the overarching construct of Lymphedema Self-Care, which is defined as the set of intentional behaviors and attitudes necessary for the long-term management and mitigation of symptoms associated with BCRL. The final 31-item scale is structured around four distinct, empirically derived sub-constructs:

• Protection: Measures preventative behaviors taken by individuals to avoid injury, infection, or environmental exposure (e.g., heat, cold) that could lead to lymphedema exacerbation.
• Activity and Disease Process Management: Focuses on active engagement in therapeutic activities, including prescribed exercises, self-massage, regular monitoring of symptoms, and adherence to follow-up schedules.
• Pressure Management: Assesses adherence to prescribed compression therapies, such as the consistent use and appropriate maintenance of pressure garments or bandages essential for controlling swelling.
• Sustainability: Reflects the long-term commitment and persistence required to integrate demanding self-care routines into daily life, addressing potential conflicts with work, family, or other personal responsibilities.

Validity

The validity of the BCRL-SCS was established through rigorous evaluation of both content and construct validity, ensuring the instrument accurately measures the intended domain of self-care behavior.

Content Validity: Content validity was assessed by lymphedema experts using the Item-Content Validity Index (I-CVI) and the Scale-Content Validity Index (S-CVI). The results demonstrated high relevance and representativeness: the I-CVI for individual items exceeded the threshold of 0.78, and the overall S-CVI was higher than 0.90, aligning with established psychometric standards (Polit & Beck, 2006).

Construct Validity: Construct validity was confirmed through both Exploratory Factor Analysis (EFA) and Confirmatory Factor Analysis (CFA). These analyses provided strong empirical evidence supporting the theoretical four-factor structure of the scale, confirming that the items appropriately load onto the intended self-care dimensions.

Reliability

The reliability of the Breast Cancer Related Lymphedema Self-Care Scale was assessed through standard psychometric methods, including internal consistency and split-half reliability, demonstrating high stability and consistency.

Internal Consistency: The scale exhibited strong overall internal consistency, indicated by a Cronbach’s alpha coefficient of 0.82 for the total scale. Subscale reliability was found to be acceptable to good, with Cronbach’s alpha values ranging from 0.62 to 0.86 across the four dimensions.

Split-half Reliability: Further supporting its consistency, the split-half reliability was assessed using the Spearman Brown coefficient, which yielded a result of 0.88. This high coefficient reinforces the structural consistency and stability of the BCRL-SCS across its item set.

Factor Analysis

Factor analysis was extensively utilized to determine the underlying structure of the scale, resulting in the final 31-item, four-factor model.

Exploratory Factor Analysis (EFA): Initial principal component analysis suggested 12 factors with eigenvalues greater than one. However, the scree plot strongly indicated that a four-factor structure provided the most parsimonious and clinically relevant explanation of the variance. This revised EFA demonstrated that the four retained factors collectively accounted for 43.62% of the total variance. Items that showed weak factor loadings (below 0.30) were systematically removed to enhance the factorial purity of the final instrument.

Confirmatory Factor Analysis (CFA): A Confirmatory Factor Analysis was performed to validate the derived four-factor model. The fit indices generally supported a good model fit. Key indicators included a chi-square to degrees of freedom ratio (χ2 /df) of 1.47, a value considered excellent in structural equation modeling. Other significant fit indices, such as RMSEA = 0.048 and CFI = 0.90, also reinforced the structural validity of the BCRL-SCS.

Instrument

Test Type: The Breast Cancer Related Lymphedema Self-Care Scale is an original instrument designed as an Inventory/Questionnaire.

Format: The 31 items are scored using a four-point Likert scale. The administration method specified in the study was electronic, administered through face-to-face interviews. Items measuring self-care practices use response options (4 = always, 1 = none), while items measuring sustainability use agreement options (4 = I completely agree, 1 = I don’t agree at all). Reverse scoring is applied to Items 4, 5, 6, 8, 9, 10, 11, 26, 27, 28, 36, 37, and 38.

Language Available: English.

Population Group: Designed for use with the human population, specifically adult females who are outpatients.

Age Group: Applicable to all adult age groups (18 years and older), including Young Adulthood (18-29 years), Thirties (30-39 years), Middle Age (40-64 years), and Aged (65 years and older).

Population Details: The validation study was conducted on women suffering from breast cancer-related lymphedema (BCRL). Participants were recruited from a Lymphedema (LE) outpatient clinic located in Turkey.

Test Methodology: The development process was comprehensive, employing: Test Validity (overall), Construct Validity, Content Validity, Test Reliability (overall), Internal Consistency, Split-Half Reliability, Factor Analysis, Confirmatory Factor Analysis, Exploratory Factor Analysis, and Principal Component Analysis.

Keywords

Breast Cancer Related Lymphedema Self-Care, Self-Care Practices, Lymphedema Management, Patient Self-Care, Breast Cancer Survivors, Psychometric Tool, Nursing Research.

Authors

Deveci, Zeynep

Author ORCID Identifier: orcid.org/0000-0002-7383-5135

Affiliation Email addresses: Pamukkale University, Faculty of Health Science Nursing Department; Email: [email protected]

Correspondence Address: Pamukkale University, Faculty of Health Science, Nursing Department, 3rd floor no. C3-10, Pamukkale, Turkey, 20160

Karayurt, Özgül: Izmir University of Economics, Faculty of Health Science Department of Nursing. Email: No data is Available

Bilik, Ozlem: Dokuz Eylul University, Nursing Faculty Surgical Nursing Department. Email: No data is Available

Eyigör, Sibel: Ege University Faculty of Medicine Department of Physical Therapy and Rehabilitation. Email: No data is Available

Permissions & Fee and Test Year

Permissions: The Breast Cancer Related Lymphedema Self-Care Scale may be used for academic research and teaching purposes.

Commercial Use: No data is Available.

Fee: There is no fee associated with the use of this scale.

Test Year: The scale was developed and published in 2023.

Reference’s

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. doi.org/10.1177/1054773820947980

Items of the Breast Cancer Related Lymphedema Self-Care Scale

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

The Breast Cancer Related Lymphedema Self-Care Scale consists of 31 items structured around four distinct factors or subscales, which collectively measure various aspects of self-care practices in women with breast cancer-related lymphedema.

Factors and Subscales:

• Protection: This factor likely encompasses items related to protective measures taken by individuals to prevent lymphedema exacerbation or complications.
• Activity and disease process management: This factor would include items pertaining to how individuals manage their daily activities and the progression of their lymphedema condition.
• Pressure management: This factor focuses on practices related to managing pressure on the affected limb, which is crucial in lymphedema care (e.g., compression garments, proper limb positioning).
• Sustainability: This factor likely addresses the long-term adherence to self-care practices and the sustained effort in managing lymphedema over time.

Protection

1. I protect my arm from excessive heat and cold.

2. I protect my affected arm from infections (bites of dogs and cats, having manicure, etc.).

3. I lift weights with my affected arm.

4. I measure blood pressure on my affected arm.

5. I give blood from my affected arm, have injection.

6. I observe my affected arm in terms of infection symptoms such as redness, temperature increases, and swelling.

7. I do housework that requires repetitive work such as cleaning the windows, carpets, ironing.

8. I sleep on my affected arm at nights.

9. I wear tight clothes to wrap my affected arm.

10. I wear ring, tag, etc. accessories on my affected arm.

Activity and Disease Process Management

1. I wear gloves when I do house and garden work.

2. I lift my affected arm up with certain intervals during daytime.

3. I do my exercises as I am instructed.

4. When I have lymphedema, I apply lymph massage myself.

5. I apply moisturizer to my affected arm.

6. I apply arm measurements alone at home.

7. I go to lymphedema follow-ups with intervals recommended to me.

8. I can sustain my self-care while I am working.

9. I carry antibiotic cream in case there might be cuts in my affected arm.

10. I know what to do when I have redness, swelling and/or temperature increase.

11. I know what to do to avoid the progression of lymphedema.

12. I try to obtain more information to do my self-care better.

Pressure Management

1. I wear pressure cuff when I do exercises.

2. I wear pressure cuff every day or apply bandage.

3. I know where to buy lymphedema materials when I need them.

4. I know how to wash and maintain the pressure cuff.

Sustainability

1. I only do self-care practices when I am at home.

2. I delay self-care practices when I am ill.

3. When my family asks for something from me, I prioritize them.

4. I can only apply self-care practices when my housework is finished.

5. Lymphedema self-care is a burden for me.

6. I delay doing things I know that are useful for my self-care.

7. I try to gain more information to do my self-care better.

Note: Items are scored on a four-point Likert scale to evaluate the self-care practices and sustainability statements (4 = always, 3 = often, 2 = occasionally, and 1 = none). Items 25-31 are scored with the following response options: 4 = I completely agree, 3 = I agree, 2 = I don’t agree, and 1 = I don’t agree at all. Items 4, 5, 6, 8, 9, 10, 11, 26, 27, 28, 36, 37, and 38 are scored in the reverse order.