Breast cancer-related lymphedema (hereafter, lymphedema), an abnormal accumulation of lymph fluid in the ipsilateral body area or upper limb, remains an ongoing major health problem affecting more than 40% of 3.1 million breast cancer survivors in the United States. Lymphedema is a cardinal sign of an impaired lymphatic system. Impairment in lymphatic system leads to a chronic disease state with multiple associated symptoms that require ongoing symptom management. Similar to risk reduction and management of other chronic diseases (e.g. diabetes and prediabetes), proactive and preventive education on signs and symptoms of lymphedema and risk reduction activities is essential for early identification and treatment of lymphedema. Yet, this proactive approach to risk reduction is not a standard of care for those at risk for developing lymphedema associated with breast cancer treatment. Sadly, this leads to patients at risk for lymphedema self-diagnosing lymphedema and seeking professional help only after visible swelling is present. This reduces the opportunity for early identification and treatment which is associated with better patient outcomes. More importantly, the experience of lymphedema symptoms is a cardinal sign of an early stage of lymphedema in which changes cannot be detected by current objective measures of limb volume or lymph fluid level. Without timely assessment and intervention in this early disease stage, lymphedema can progress into a chronic condition that no surgical or medical interventions at present can cure. mHealth can be broadly defined as the use of information and communication technology that is accessible to patients or healthcare professionals via mobile technology to support the delivery of patient or population care or to support patient self-management. Patient-centered care related to lymphedema symptom management is often inadequately addressed in clinical research and practice. mHealth plays a significant role in improving self-management, patient-clinician communication, and access to health information. The-Optimal-Lymph-Flow mHelath system is a multi-language, patient-centered, web-and-mobile-based educational and behavioral mHealth interventions focusing on safe, innovative, and pragmatic electronic assessment and self-management strategies for lymphedema symptoms.
The purpose of this presentation is to describe the development and test of TOLF system to evaluate reliability, validity, and efficacy of mHealth assessment as well as usability, feasibility, acceptability and efficacy of mHealth interventions for self-management of lymphedema symptoms among the end-user of breast cancer survivors.
Methods:
The development of TOLF was guided by the Model of Self-Management for Symptoms and designed based on principles fostering accessibility, convenience, and efficiency of mHealth system to enhance training and motivating assessment of and self-management for lymphedema symptoms. Test of TOLF was accomplished by conducting a psychometric study to evaluate reliability, validity, and efficiency of the electronic version of Breast Cancer and Lymphedema Symptom Experience Index, a usability testing and a pilot feasibility testing of mHealth self-managment interventions.
Results:
Findings from the psychometric study with 355 breast cancer survivors demonstrated high internal consistency of the electronic version of the instrument: a Cronbach’s alpha coefficient of 0.959 for the total scale, 0.919 for symptom occurrence, and 0.946 for symptom distress. Discriminant validity of the instrument was supported by a significant difference in symptom occurrence (z=-6.938, p<0.000), symptom distress (z=-5.894, p<0.000), and total scale (z=-6.547, p<0.000) between breast cancer survivors with lymphedema and those without it. Findings of usability testing showed that breast cancer survivors were very satisfied with the mHealth self-managment interventions: 90% rated the system having no usability problems; 10% noted minor cosmetic problems: spelling errors or text font size. The majority of participants 96.6% strongly agreed that the system was easy to use and effective in helping to learn about lymphedema, symptoms and self-care strategies. Feasibility testing demonstrated that a 12-week one group intervention using TOLF had significantly positive effects on less pain (p=0.031), less soreness (p=0.021), less aching (p=0.024), less tenderness (p=0.039), fewer numbers of lymphedema symptoms (p=0.003), and improved symptom distress (p=0.000) at 12 weeks after intervention. Themes from the qualitative data included empowerment, high quality information, loving avatar simulation videos, easy accessibility, and user-friendliness.
Conclusion:
mHealth is important for delivery of quality nursing care globally. TOLF system using the electronic version of the instrument is able to assess patients’ lymphedema symptoms with high reliability and validity. Thus, patients can report their lymphedema symptoms anywhere and anytime globally. Findings of psychometric testing on the ability of TOLF system to collect health, clinical, research data support the reliability and validity of electronic instruments administrated by TOLF system. Findings of testing on TOLF system have provided evidence for breast cancer survivor’s acceptance, usability and feasibility of TOLF system to enhance self-care strategies for lymphedema symptom management. TOLF provides a much-needed mHealth system for advancing the science of self-management for lymphedema symptoms and a foundation for transformation of healthcare from reactive and hospital-centered to preventive, proactive, evidence-based, patient-centered and focused on well-being rather than disease, the very important core of nursing care.