Iterative qualitative approach to establishing content validation of a patient-reported outcome measure for arm lymphedema: the LYMPH-Q Upper Extremity Module.

BACKGROUND: Breast cancer-related lymphedema (BRCL) is one of the most common causes of upper extremity (UE) lymphedema in developed nations and substantially impacts health-related quality of life. To advance our understanding of the epidemiology and treatment of BRCL, rigorously developed and validated patient-reported outcome measures (PROMs) are needed. This study aimed to demonstrate the iterative content validity of a modular UE lymphedema-specific PROM called the LYMPH-Q UE module. METHODS: A multi-step iterative qualitative approach was used. Semi-structured interview data from in-depth qualitative interviews with adult women (18 years and older) with BCRL were used to develop the first set of the LYMPH-Q UE scales. The content validity of these scales was demonstrated with patient and clinician feedback. Over the course of cognitive debriefing interviews, additional concepts of lymphedema worry and impact on work were identified as missing from the LYMPH-Q UE module. Subsequently, two new qualitative studies (a focus group and in-depth concept elicitation interviews with patients) were conducted, and two new scales were developed to measure lymphedema worry and impact on work life and their content validity was demonstrated. RESULTS: Qualitative data from in-depth and cognitive interviews with 15 (age 40-74 years) and 16 (age 38-74 years) women with BRCL, respectively, and feedback from 12 clinical experts, were used to develop and demonstrate the content validity of six LYMPH-Q UE scales measuring symptoms, function, appearance, psychological, information, and arm sleeve. Additionally, data from in-depth interviews with 12 (age 35-72 years) women with UE lymphedema and four focus groups (n = 16 women; age 35-74 years) was used to develop and assess the content validity of two new LYMPH-Q UE scales measuring lymphedema worry and impact on work life. The content validity of the previously established six scales was also demonstrated in these subsequent qualitative studies. CONCLUSION: The LYMPH-Q UE is a modular PROM developed using international guidelines for PROM development and can be used in clinical practice, research, and quality improvement to enhance patient-centered shared decision-making. This study's innovative and iterative approach to content validation demonstrates that the LYMPH-Q UE is a comprehensive measure that includes important concepts relevant to patients with UE lymphedema.

Psychometric Evaluation of the Bahasa Malaysia Version of the Lymphedema Functioning, Disability, and Health Questionnaire for Upper Limb Lymphedema in Patients with Breast Cancer-Related Lymphedema.

Background: Breast cancer-related lymphedema (BCRL) is the most prevalent comorbidity that occurs following breast cancer treatments and has negative impact on the patients' quality of life (QoL). The Lymphedema Functioning, Disability, and Health Questionnaire for Upper Limb Lymphedema (Lymph-ICF-UL) is a valid and reliable instrument in assessing the QoL of patients with BCRL. However, the Bahasa Malaysia (BM) version is not available yet. This study aimed to translate the Lymph-ICF-UL into BM and to evaluate its validity and reliability. Methods and Results: A forward-backward translation was performed based on Sousa's guideline, and then, the face, content, construct validity, internal consistency, and test-retest reliability were tested. Face validity was assessed by five patients, and content validity was evaluated by six experts. Then, construct validity and internal validity were assessed in 107 patients. Finally, test-retest reliability was analyzed in 21 patients. Two items were eliminated following suggestions from the patients and experts. All patients found the scoring system and items clear and relevant. The results showed sufficient content validity index and modified kappa statistics value. Confirmatory factor analysis showed acceptable fit indices. Cronbach's alpha values ranged from 0.67 to 0.95, intraclass correlation coefficient ranged from 0.88 to 0.99, standard error measurement was 2.29-6.15, and the Bland-Altman plot showed an agreement between two test occasions. Conclusion: These results suggested that the Lymph-ICF-UL BM has good validity and reliability in evaluating the QoL of patients with BCRL in Malaysia.

The Impact of Sleep on the Lives of Women Who Have Breast Cancer-Related Lymphedema: A Qualitative Exploration.

Background: Breast cancer survivors (BCSs) have many lifelong symptoms of anxiety, depression, lymphedema, and fatigue that can be exacerbated by sleep disturbance. However, little is known about unique factors contributing to sleep disturbance among BCSs with lymphedema; this requires further investigation to offer appropriate support and treatment to these individuals. Therefore, the objective of this study was to capture perceptions and experiences of lymphedema and sleep among BCSs with lymphedema. Methods and Results: Qualitative description guided data collection and analysis as part of a mixed-methods investigation to characterize sleep disturbance among BCSs with and without lymphedema. The participants were interviewed one-on-one using a semistructured interview guide. Inductive content analysis was completed using an iterative coding approach, condensing, and categorizing to develop four themes. Seven BCSs with lymphedema participated. From their narratives, four themes were developed: (1) mind and body fatigue are exacerbated by sleep disturbance; (2) fatigue impacted fragile coping and support systems; (3) fatigue influenced self-identity and roles in society; and (4) self-management strategies were used for sleep health. Conclusion: The participants' perceptions of sleep disturbances' impact on their lives endorse further investigation into optimal interventions to improve sleep quality and modify these impactful findings to create a higher quality of life for survivorship.

Experience in a rehabilitation center for mastectomized women at the start of the COVID-19 pandemic.

OBJECTIVE: Describe the experience lived in an interdisciplinary follow-up care center for mastectomized women at a public university in São Paulo during the beginning of the COVID-19 pandemic. METHOD: Experience report on the health care provided in the health center for mastectomized women. RESULTS: The care was provided three times a week by an interdisciplinary health team. The mentioned areas that cover the women care in the center: Physical, Psychological, Social Support and Health Education. CONCLUSIONS: The attention by an interdisciplinary team becomes prevalent in the care of mastectomized women, since cancer and its treatment produce various changes in women's lives in the short and long term, so follow-up and support must be biopsychosocial, covering all areas that may be affected, especially during the pandemic.

Psychometric properties of quality of life questionnaires for patients with breast cancer-related lymphedema: A protocol for a systematic review.

BACKGROUND: Breast-cancer related lymphedema (BCRL) is a common condition among breast cancer survivors that could impact the quality of life (QoL) of patients. Exploring the QoL of the patients with BCRL using valid and reliable QoL is crucial to capture the status of this important aspect hence appropriate intervention could be implement to patient. However, so far no scientific review is available, which reports the psychometric properties of the QoL questionnaires used in BCRL. The purpose of this systematic review is to comprehensively assess the psychometric properties of QoL questionnaires in patients with BCRL. METHODS: We will perform comprehensive searches of published studies in electronic databases such as Medline (via Ovid), EBSCOhost, PubMed, Scopus, and Web of Science by using the following search terms: "quality of life"; "breast cancer"; "upper limb"; "lymphedema"; "questionnaire"; and "measurement properties." Only full-text articles in English language are included. Two reviewers will independently conduct the article selection, data extraction, and quality assessment. Any possible conflict between the 2 reviewers is going to be solved with the help of a third reviewer. The Consensus-based Standards for the Selection of Health Measurement Instrument (COSMIN) checklist and manual will be used to assess the selected study quality. RESULTS: This review will provide an updated overview of available lymphedema-specific questionnaires used in BCRL population and then recommend the most valid and reliable QoL questionnaire for clinical and research use in patients with BCRL. CONCLUSION: This review may help the clinician and researcher to find an updated overview of various questionnaires used to assess BCRL patients' QoL. ETHICS AND DISSEMINATION: This review will use data from published studies. Therefore, ethical approval is not required prior to this review. The results of this review will be published in a peer-reviewed journal or presented at conferences. STUDY REGISTRATION: OSF osf.io/8xwym.

Comparison of the short-term effects of hyperbaric oxygen therapy and complex decongestive therapy on breast cancer-related lymphedema: A pilot study.

Although there have been some reports that hyperbaric oxygen therapy (HBOT) is effective in treating breast cancer-related lymphedema (BCRL), controversy regarding its therapeutic effects remains.We sought to evaluate the efficacy of HBOT in addition to conventional complex decongestive therapy (CDT) for BCRL.A prospective observational study was conducted on 10 patients with BCRL. After screening, the subjects were stratified into a CDT-only group and a CDT and HBOT combination (CDT-HBOT) group. All patients received a total of 10 treatments over 2 weeks. Changes in the circumference of the upper limbs, quality-of-life questionnaire results, and bioelectrical impedance values were compared between the 2 groups.Between both groups, there were no significant differences in demographic or clinical characteristics and in the quality-of-life outcomes for lymphedema of the limbs. The parameters measured by bioimpedance spectroscopy showed more significant improvements in the CDT-HBOT group than in the CDT-only group.In patients with BCRL, HBOT may be recommended as an adjunct treatment to the existing therapies.

Optimizing Quality of Life for Patients with Breast Cancer-Related Lymphedema: A Prospective Study Combining DIEP Flap Breast Reconstruction and Lymphedema Surgery.

BACKGROUND: Patients with breast cancer-related lymphedema can be treated with a simultaneous deep inferior epigastric perforator (DIEP) flap, vascularized inguinal lymph node transfer, and lymphovenous anastomosis for aesthetic breast reconstruction and lymphedema in one operation. METHODS: The authors performed a comparison of prospectively followed patients who underwent free flap breast reconstruction with vascularized inguinal lymph node transfer and anastomosis to a retrospective cohort of patients who underwent free flap breast reconstruction with vascularized inguinal lymph node transfer alone. RESULTS: Thirty-three patients underwent DIEP flap reconstruction with vascularized inguinal lymph node transfer and lymphovenous anastomosis, and 21 received a free flap with lymph node transfer alone. There were no significant differences in demographics, adjuvant chemotherapy, or radiation therapy. The average number of nodes removed was also equivalent (21.2 versus 21.4 nodes). Two anastomoses per patient, on average, were performed (range, one to four) in the combined cohort, and all patients (100 percent) reported a subjective improvement in symptoms, compared with 81.0 percent of patients undergoing only lymph node transfer (p = 0.019). Perometer measurements demonstrated a significant reduction between the groups at early time points [3 months, 40.7 percent versus 20.0 percent (p = 0.037); 6 months, 57.0 percent versus 44.5 percent (p = 0.043)]; however, the difference was not statistically significant at 12 months (60.4 percent versus 57.8 percent; p = 0.43). CONCLUSION: This is the first prospective study demonstrating the safety and efficacy of a combined DIEP flap with vascularized inguinal lymph node transfer and lymphovenous anastomosis, which may be superior to lymph node transfer alone. CLINICAL QUESTION/LEVEL OF EVIDENCE: Therapeutic, III.

Improving the quality of life of patients with breast cancer-related lymphoedema by lymphaticovenous anastomosis (LVA): study protocol of a multicentre randomised controlled trial.

INTRODUCTION: Early breast cancer detection and advancements in treatment options have resulted in an increase of breast cancer survivors. An increasing number of women are living with the long-term effects of breast cancer treatment, making the quality of survivorship an increasingly important goal. Breast cancer-related lymphoedema (BCRL) is one of the most underestimated complications of breast cancer treatment with a reported incidence of 20%. A microsurgical technique called lymphaticovenous anastomosis (LVA) might be a promising treatment modality for patients with BCRL. The main objective is to assess whether LVA is more effective than the current standard therapy (conservative treatment) in terms of improvement in quality of life and weather it is cost-effective. METHODS AND ANALYSIS: A multicentre, randomised controlled trial, carried out in two academic and two community hospitals in the Netherlands. The study population includes 120 women over the age of 18 who have undergone treatment for breast cancer including axillary treatment (sentinel lymph node biopsy or axillary lymph node dissection) and/or axillary radiotherapy, presenting with an early stage lymphoedema of the arm, viable lymphatic vessels and received at least 3 months conservative treatment. Sixty participants will undergo the LVA operation and the other sixty will continue their regular conservative treatment, both with a follow-up of 24 months. The primary outcome is the health-related quality of life. Secondary outcomes are societal costs, quality adjusted life years, cost-effectiveness ratio, discontinuation rate of conservative treatment and excess limb volume. ETHICS AND DISSEMINATION: The study was approved by the Ethics Committee of Maastricht University Medical Center (METC) on 19 December 2018 (NL67059.068.18). The results of this study will be disseminated in presentations at academic conferences, publications in peer-reviewed journals and other news media. TRIAL REGISTRATION NUMBER: NCT02790021; Pre-results.

Patient-reported outcomes and objective assessments with arm measurement and bioimpedance analysis for lymphedema among breast cancer survivors.

PURPOSE: Lymphedema (LE) decreases the quality of life of breast cancer patients. Objective quantification of PRO may improve the discordance between patient-reported outcomes (PROs) and objective assessments of LE by establishing a standard follow-up for LE. This study determined the prevalence of subjective and objective LE and evaluated the correlation between objective assessment and PRO of LE in primary breast cancer patients undergoing breast and axilla surgery. METHODS: Breast cancer patients who underwent sentinel lymph node biopsy (SN) or axillary lymph node dissection (ALND) more than 1 year after surgery were enrolled. We prospectively evaluated LE using the Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE) and two objective assessments (arm circumference and bioimpedance) and analyzed their correlations. RESULTS: Between November 2018 and January 2019, 631 patients (SN; n = 415, ALND; n = 216) were enrolled. The median age, body mass index, and duration from surgery was 56 years, 21.9 kg/m2, and 3.8 years, respectively. The prevalences of subjective and objective LE were 4.1% and 1.4% in the SN group and 51.8% and 24.1% in the ALND group, respectively. The objective assessments were weakly positively correlated with PRO-CTCAE. Arm circumference measurement correlated better than bioimpedance overall and was most strongly correlated with "frequency" (r = 0.485, p < 0.01). CONCLUSIONS: LE occurred in few SN patients. The prevalence of subjective LE was higher than that of objective LE. Arm circumference measurements better reflected PRO than did bioimpedance. These results underscore the limitation of LE detection by subjective or objective methods alone.

A Randomized Clinical Trial Comparing the Impact of a Web-Based Multimedia Intervention Versus an Educational Pamphlet on Patient Outcomes in Breast Cancer Survivors with Chronic Secondary Lymphedema.

Objective: The purpose of this study was to evaluate the effects of a Web-based Multimedia Intervention (WBMI) for breast cancer-related lymphedema (BCRL) patients on symptom burden, function, psychological well-being, costs, and arm volume. Methods: Women with BCRL were randomized to intervention (n = 80) or control (n = 80) groups. The WBMI offered 12 modules, each of which took about 30 minutes to complete. The Pamphlet took about 2 hours to read. Data on symptom burden, psychological well-being, function, and costs were collected preintervention; and 1, 3, 6, and 12 months postintervention. A subgroup of 45 regional patients had arm extracellular fluid measured by bioimpedance at baseline and at 3, 6, and 12 months postintervention. Intervention perceived value was also captured. Results: A statistically significant difference (p = 0.011) was observed for rates of intervention completion, WBMI (58%), and Pamphlet (77%). With the exception of the number of biobehavioral symptoms (mood), no statistically significant differences between groups in symptom reduction were apparent between baseline and 1 or 12 months (effect sizes = 0.05-0.28, p > 0.05) based on the Lymphedema Symptom Intensity and Distress Scale-Arm (LSIDS-A). No statistically significant differences between the groups were observed for changes in other variables. The WBMI was perceived as providing better self-care information than the Pamphlet (p = 0.001). Conclusions: WBMI participants experienced improved biobehavioral symptoms and higher perceived quality of information. The lack of significant differences on other variables may be due to the high percentage of participants who did not complete the WBMI.

Impact of breast cancer-related lymphedema on working women.

BACKGROUND: The professional impact of upper limb lymphedema, which affects 15-20% of women after breast cancer treatment, has been poorly evaluated. OBJECTIVE: To analyze lymphedema characteristics and global lymphedema- and/or sleeve-attributed impact (mildly inconvenient to severely debilitating) on professional activities, workplace relationships, and workstation ergonomics. METHODS: Patients received a standardized, anonymous, self-administered questionnaire at consultation/hospitalization for treatment in a specialized lymphedema management center. RESULTS: All 134 consecutive women (March/2015-March/2017; median age 54), with 53-month median lymphedema duration and 34% median excess volume, were included; 35% considered global impact (arm-use impairment) high. For high vs. low global impact during occupational activities, univariate analyses identified global impairment as being associated with the low (23.8%), intermediate (60%), or high (63.2%) (p < 0.01) arm-use level, while multivariate analyses retained intermediate (OR 6.9 [95% CI 1.1-118.1], p < 0.01) and high (OR 4.5 [95% CI 1.5-37.3], p < 0.05) vs. low arm-use level. Lymphedema affected the careers of 70 (52.2%) patients, mostly those with severely impaired arm movement (53.8% vs. 10.2, p < 0.001), without modifying their relationships with colleagues and superiors for 84 (62.7%). Highly impaired women reported changed relationships with colleagues (45% vs. 20%, p < 0.01) and superiors (43.6% vs. 16.9%, p < 0.01). Only 10 women's (7.5%) job changes reflected lymphedema or its treatment. Workplace adaptations (53% ergonomic) were made for 36 (26.9%) patients, mostly those with greater arm-movement impairment (43.6% vs. 25.3%, p < 0.05), who were highly satisfied (86%). CONCLUSION: Upper limb lymphedema can significantly impact work, sometimes upending careers. The rare workstation adaptations were beneficial. Occupational physicians should assess lymphedema-attributed difficulties to improve working conditions.

Factors associated with professional healthcare advice seeking in breast cancer-related lymphedema.

OBJECTIVES: This study aimed to identify the cognitive factors associated with the professional healthcare advice (PHCA) seeking behavior in breast cancer-related lymphedema (BCRL). METHODS: From January 2018 to December 2018, patients with BCRL were prospectively enrolled for a cross-sectional survey of lymphedema-related perceived risks, lymphedema quality of life (LYMQoL), knowledge scale of lymphedema, and PHCA behavior at first clinical visit, 3 and 6 months postbaseline. RESULTS: A total of 180 patients including 100 (55.6%) patients underwent a vascularized lymph node transfer (VLNT) and 80 (44.4%) patients received compressive decongestive therapy (CDT) were enrolled. At 6 months of follow-up, mean episodes of cellulitis (from 2.2 to 0.2 times/year), mean circumferential difference (7.8 ± 3.9%), wearing compression garments (from 29% to 0 %) in the VLNT group were statistically reduced than those in the CDT group (p = .01, <.01, and <.01, respectively). The overall LYMQoL had statistical improvement in VLNT group (p < .01). The short symptom duration, greater education level, less episodes of cellulitis, and higher knowledge of lymphedema were associated with increased adherence to PHCA (p = .03, .03, .02, and .01, respectively). CONCLUSION: BCRL patients who sought PHCA had great control of lymphedema and improve their quality of life.

Compression Vest Treatment for Symptomatic Breast Edema in Women Treated for Breast Cancer: A Pilot Study.

Background: Lymphedema of the breast/chest wall after breast cancer treatment is often associated with pain and reduced quality of life. We conducted a pilot study to evaluate whether the use of a compression vest reduced symptoms of breast/chest wall edema in breast cancer patients. Methods and Results: This single-center study included patients (n = 25) with symptomatic breast/chest wall edema with a pain score of ≥3 on the Numerical Rating Scales (range 1-10). The patients were instructed to wear a compression vest (Lymphatrex, Class II) for 6 months. Wilcoxon signed-rank tests were used to compare differences in patient-reported pain intensity/severity. Analyses included all patients with available data. In total, 17 (68%) continued to wear their vests for 6 months, whereas the other 8 withdrew prematurely. At baseline, median pain severity (4.9, interquartile range [IQR] 3.6-6.0) and pain interference (4.3, IQR 2.1-5.9) scores were significantly higher compared with pain scores after wearing the compression vest for 6 months (1.8 IQR 1.0-4.8 and 1.4 IQR 0.9-4.4, resp.). Patient-reported breast/chest wall swelling decreased from 92% (n = 22) at baseline to 71% (n = 12) at 6 months. The prevalence of moderate/severe patient-reported breast/chest wall pain declined from 63% (n = 15) at baseline to 18% (n = 3) at 6 months. Physical, emotional, and social functioning improved over time and was comparable to scores of the Dutch reference population. Conclusion: The results of this pilot study suggest that a compression vest could be an acceptable and effective treatment option for patients with painful breast/chest wall edema. In compliant patients, swelling and pain was significantly reduced.

Cuidado de enfermagem na perspectiva do mundo da vida da mulher-que-vivencia-linfedema-decorrente-do-tratamento-de-câncer-de-mama / Atención en enfermería en la perspectiva de mundo de la vida de la mujer-que-vivencia-linfedema-decorrente-del-tratamiento-de-cáncer-de-mama / Nursing care on the world of life perspective of women-who-experience-lymphedema-resulting-from the-breast cancer-treatment

RESUMO Objetivo Desvelar sentidos da mulher na vivência do linfedema decorrente do tratamento de câncer de mama e analisar propostas de cuidado na perspectiva do mundo da vida dessa mulher. Método Estudo fenomenológico, fundamentado no referencial teórico e metodológico de Martin Heidegger. Os cenários de pesquisa foram o Hospital Ascomcer e a Fundação Cristiano Varella, ambos em Minas Gerais, Brasil. Procedeu-se entrevista fenomenológica com 13 mulheres que vivenciavam o linfedema por câncer de mama. Resultados As mulheres mostraram-se envergonhadas e chateadas com o braço sem estética. Ficam deprimidas, perdem a autoestima e tentam disfarçar, mas nem sempre é possível. Em alguns momentos, preferem não sair de casa. Sentem dificuldade de comprar roupas que se ajustem no braço edemaciado. O ser-aí-mulher-que-vivencia-o-linfedema-em-decorrência-do-tratamento-de-câncer-de-mama revela-se na aparência e na impessoalidade. O linfedema implica em mudanças físicas visíveis a todos, porém está oculta as dificuldades vividas pelo ser-mulher no cotidiano assistencial. Conclusão e implicações para a prática Cabe ao Enfermeiro considerar a percepção da mulher sobre si mesma em relação a sua imagem corporal para ampliar a sua prática profissional e buscar repensar estratégias de cuidado que aumentem a autoestima e melhorem sua qualidade de vida.

RESUMEN Objetivo Desvelar sentidos de la mujer en vivencia del linfedema resultante del tratamiento de cáncer de mama y analizar propuestas de cuidado en la perspectiva de mundo de la vida de esa mujer. Método Estudio fenomenológico, fundamentado en el referencial teórico y metodológico de Martin Heidegger. Los escenarios de investigación fueron el Hospital Ascomcer y la Fundación Cristiano Varella, ambos en Minas Gerais, Brasil. Se realizó entrevista fenomenológica con trece mujeres que vivían el linfedema. Resultados Las mujeres se mostraron avergonzadas y aburridas con el brazo sin estética. Se quedan deprimidas, pierden la autoestima e intentan disimular, pero no siempre es posible. En algunos momentos prefieren no salir de casa. Sienten dificultad para comprar ropa que se ajuste en el brazo edemaciado. El ser-ahí-mujer-que-vivencia-el-linfedema-en-consecuencia-del-tratamiento-de-cáncer-de-mama se revela en la apariencia e impersonalidad. El linfedema implica cambios físicos visibles a todos, pero está oculto en las dificultades vividas por el ser-mujer en el cotidiano asistencial. Conclusión e implicaciones para la práctica Cabe al enfermero considerar la percepción de la mujer sobre sí misma en relación a su imagen corporal para ampliar su práctica profesional y buscar repensar estrategias de cuidado que aumenten su autoestima y mejoren su calidad de vida.

Abstract Objective To unveil the woman's senses in the experience of lymphedema resulting from the treatment of breast cancer and analyze care proposals from the perspective of this woman's world of life. Method a phenomenological study, based on the theoretical and methodological reference of Martin Heidegger. The research scenarios were the Ascomcer Hospital and the Cristiano Varella Foundation, both in Minas Gerais, Brazil. A phenomenological interview was conducted with thirteen women who experienced lymphedema due to breast cancer. Results The women were ashamed and annoyed with the arm without esthetics. They become depressed, lose self-esteem and try to disguise, but it is not always possible. At times, they prefer not to leave the house. They find it difficult to buy clothes that fit in the swollen arm. The being-there-woman-who-experiences-the-lymphoedema-in-treatment-of-breast-cancer is revealed in appearance and impersonality. Lymphedema implies physical changes visible to all, but the difficulties experienced by the being-woman in daily care are hidden. Conclusion and implications for practice It is up to the nurse to consider the woman's perception about herself in relation to her body image to broaden her professional practice and seek to rethink care strategies that increase self-esteem and improve her quality of life.

The Danish version of Lymphoedema Functioning, Disability and Health Questionnaire (Lymph-ICF) for breast cancer survivors: Translation and cultural adaptation followed by validity and reliability testing.

PURPOSE: To translate and culturally adapt the Lymphoedema Functioning, Disability and Health Questionnaire (Lymph-ICF) for breast cancer survivors with arm lymphedema into Danish and examine its content validity and reliability. METHODS: (1) Translation and cultural adaptation was performed in 10 steps following international guidelines (International Society for Pharmacoeconomics and Outcome Research); (2) cognitive interviewing (step 7) was conducted in 15 women with breast cancer related arm lymphedema to explore understandability, interpretation, and cultural relevance; (3) after adjustments, content validity (N = 52) was explored by interviews; and (4) reliability (N = 50) examined by intraclass correlation coefficients (ICC) statistics and Cronbach alpha analysis. RESULTS: Cognitive interviewing lead to an adapted and improved version of the translated questionnaire. Content validity was supported. Internal consistency (α) for all questions was .98 and ranged for the different domains between 0.92 and 0.97. Test-retest reliability for the total score was highly satisfactory, ICC = 0.95, standard error of measurement (SEM) = 4.5 and smallest detectable change = 12.5. ICC values for the domains ranged from 0.84 to 0.94. SEM values differed for the domains, 6.4 (physical function), 5.7 (mobility activities), 7.09 (life and social activities), 9.1 (mental functions), and 10.2 (household activities). CONCLUSION: The translated and adjusted Lymph-ICF DK (Denmark) is reliable and valid, allowing for assessing self-reported impairments in function, activity limitations, and participation restrictions in Danish patients with breast cancer-related arm lymphedema.

Effect of Exercise on Breast Cancer-Related Lymphedema: What the Lymphatic Surgeon Needs to Know.

BACKGROUND: Breast cancer-related lymphedema (BCRL) affects many areas of daily living. Individuals with lymphedema may experience chronic and progressive swelling, recurrent skin infections, and decreased self-image and quality of life. For many years, it was considered best practice for this population to avoid exercise; however, in recent years, research has begun to challenge this belief. This systematic review and meta-analyses examined the recent literature on the effects of exercise for patients with, or at risk for, BCRL to inform best practice. METHODS: A total of 807 articles were retrieved from CINAHL, Academic Search Complete, Medline, and PubMed. Results were systematically filtered to 26 articles through inclusion criteria, exclusion criteria, and the Effective Public Health Practice Project quality assessment tool for quantitative studies. Data were pooled from studies containing relative and absolute volume measurements of limb volume, as well as upper extremity function measured by the Disabilities of Arm, Shoulder, and Hand (DASH) questionnaire; meta-analyses were conducted using SAS software. RESULTS: The literature was reviewed and statistically analyzed. Results have indicated aerobic exercise, resistance exercise, stretching, yoga, qigong, and pilates can be safe and effective in the management of symptoms for those with, or at risk for, BCRL. CONCLUSION: Several forms of exercise appear to be safe interventions for clinicians to use when treating this population and offer benefits such as improved quality of life, strength, body mass index, and mental health and decreased pain and lymphatic swelling. Additional research should be conducted to further examine the efficacy and safety of nontraditional forms of exercise in the treatment of BCRL.

Do Compression Sleeves Reduce the Incidence of Arm Lymphedema and Improve Quality of Life? Two-Year Results from a Prospective Randomized Trial in Breast Cancer Survivors.

BACKGROUND: In a previous randomized controlled trial it has been demonstrated that arm compression sleeves worn immediately after breast cancer surgery, including axillary lymph node removal in addition to physical therapy are able to reduce the occurrence of early postoperative swelling and of arm lymphedema up to 1 year and to improve quality of life. The aim of the present investigation was to check the further development of the arm swelling in patients using compression sleeves or not, and to compare the quality of life in women treated due to breast cancer 2 years after surgery. MATERIALS AND METHODS: Twenty from originally 23 patients who still wore their compression sleeves (15 mmHg) and 21 from 22 patients who had been randomized into the control group without compression could be seen after one more year. Arm volume measurements were performed and quality of life (QLQ-C30 and QLQ-BR23 questionnaires) was assessed. RESULTS: Three from 20 patients in the compression group (CG) and 6 from 21 without compression showed arm lymphedema, defined by an increase of the arm volume exceeding 10% compared with the preoperative values. Significant improvement of several quality of life parameters were found in the CG. CONCLUSION: Light compression sleeves worn for 2 years are not only able to reduce the incidence of early postoperative edema and of lymphedema, but also lead to a significant improvement of important quality-of-life parameters like physical functioning, fatigue, pain, arm and breast symptoms, and future perspectives.

Psychometric evaluation of the Chinese version of the revised illness perception questionnaire for breast cancer-related lymphedema.

The aim of this study was to modify and test the Chinese version of the Revised Illness Perception Questionnaire to measure the illness perception of breast cancer-related lymphedema among breast cancer survivors. Before the investigation, identity and causal subscales were modified and the wording of the remaining scales was also adjusted. The psychometric properties of this instrument was evaluated using the technique of explore and confirmatory factor analysis. Data from 203 breast cancer survivors was entered into factor analysis. Five causal factors were extracted after removing one item, accounting for 68.02% of the variance in total. An acceptable fit with the data for the proposed seven-factor model was obtained after eliminating three items and resetting seven error covariances. The Cronbach's α values and composite reliability coefficients were acceptable. This measurement is reliable and valid for measuring illness perceptions of breast cancer-related lymphedema in Chinese breast cancer survivors. It could be helpful for further studies that examine the effect of illness perceptions on health-related behaviours, such as lymphedema risk-reduction behaviours in the Chinese cultural context.

Psychometric development of the Upper Limb Lymphedema Quality of Life Questionnaire demonstrated the patient-reported outcome measure to be a robust measure for breast cancer-related lymphedema.

OBJECTIVES: To develop and undertake initial validation of a patient-reported outcome measure to assess health-related quality of life in patients with breast cancer-related upper limb lymphedema (ULL). STUDY DESIGN AND SETTING: We developed and validated the Upper Limb Lymphedema Quality of Life (ULLQoL) scale in two stages: devising the items and pretesting with patients and clinicians; longitudinal validation to test its psychometric properties-underlying dimensions, internal consistency, test-retest reliability, construct validity, and responsiveness. Patients with ULL were recruited from two outpatient clinics. RESULTS: We derived the ULLQoL scale from a pool of 98 items generated by patients. After further consultation, we produced the draft ULLQoL scale. For validation, 103 patients with ULL completed the draft scale and two generic health measures: SF-36 and ED-5D-3L. Psychometric analysis identified two components, physical and emotional well-being, with good internal consistency and test-retest reliability. Significant correlations with SF-36, EQ-5D-3L, and percentage excess limb volume confirmed construct validity. The ULLQoL scale showed good responsiveness to change reported by lymphedema patients and moderate to large effect sizes. CONCLUSION: The 14-item ULLQoL scale is a robust ULL-specific measure that is feasible and valid to use in both the clinical and research settings.

Patient Perceptions of Barriers to Self-Management of Breast Cancer-Related Lymphedema.

Breast cancer survivors are at lifetime risk for the development of breast cancer-related lymphedema, a chronic, potentially debilitating condition that requires life-long symptom management. Suboptimal self-management rates suggest that health care providers may not be offering educative-support options that are customized to patient-perceived needs. An Institutional Review Board-approved focus group ( N = 9) and mailed surveys ( N = 15) were used to identify (a) barriers to lymphedema self-management, (b) how breast cancer survivors with lymphedema defined education and support, (c) what type of education and support they had received, and (d) what kind of education and support they wanted. Physiological, psychological, and psychosocial factors were identified as barriers to successful lymphedema self-management. One of the main barriers identified was lack of education about lymphedema treatment and risk reduction. In addition, more than half defined support as "prescriptions" and "referrals"; therefore, it is unclear whether patients were exposed to support other than medical treatment.