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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., (© 2024. The Author(s).)

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.

Abstarct: BACKGROUND: Secondary lymphedema following breast cancer therapy remains a major problem. Vascularized lymph node transfer (VLNT) is a surgical treatment for lymphedema that has shown promising results, but limited studies in the United States have investigated outcomes for single-stage VLNT to the axilla. The goal of this prospective, ongoing study was to investigate the clinical, psychosocial, and functional outcomes of patients who underwent VLNT for the treatment of upper extremity lymphedema after breast cancer therapy., Study Design: VLNT to the axilla were performed on patients with upper extremity lymphedema after breast cancer therapy. Patients were evaluated preoperatively and postoperatively at 1-, 3-, 6-, 9-, and 12-month intervals by circumferential measurements, pain/heaviness scales, and the LYMQOL questionnaire., Results: Fifty patients met the study criteria. Preliminary results showed a decrease in arm volumes by 34.57 % at 1 month, 52.03 % at 3 months, 42.34 % at 6 months, 65.23 % at 9 months, and 58.68 % at 12 months. Pain and heaviness consistently decreased over time to 0.38 and 1.67 respectively at 12 months. Overall quality of life scores steadily improved from 5.72 preoperatively to 7.79 at 12 months. There was a significant decrease in the number of infections of the affected arm postoperatively and a decreased need for physiotherapy. Complications occurred in 17 patients and consisted mainly of minor wound complications., Conclusions: VLNT continues to demonstrate its value as a safe and effective treatment option for lymphedema after breast cancer therapy. Significant reductions in volume are accompanied by a decrease in symptoms and improvement in quality of life.