Patient’s Evaluation of The-Optimal- Lymph-Flow mHealth Self-Care

Fu, M.R., Axelrod, D., Guth, A.A., Rampertaap, K., El-Shammaa, N., Hiotis, K., Scagliola, J., Yu, G., Wang, Y. (2016) mHealth self-care interventions: managing symptoms following breast cancer treatment. mHealth 2016; 2:28. DOI: 10.21037/mhealth.2016.07.03

Empowerment

• "I am so happy that I came for the study. It empowers me, any breast cancer patients should come."
• "The website is empowering for the women who want to prevent lymphedema, as well as for those who already have lymphedema."
• "It is a fabulous program. Women will love it. I learned so much about risk reduction. The videos are fabulous to show how to exercise & I love the why I need to do the exercise. This will be a great asset to patients."
• "I liked the clarity of the explanations & the simplicity of using the website. The website is empowering for the women who want to prevent lymphedema, as well as for those who already have lymphedema."

High Quality Information

• "High quality information. Easy to understand, details included in each sections are clear to read and view."
• "Excellent explanation of lymphedema-best I’ve seen."
• "The system is excellent when I compare to the time years ago when I had breast cancer and was given Xerox copies of exercises to do."
• "Lymphatic system, lymphedema and self-care are explained very clearly. It did not create panic but clearly stated why it is important to do the lymphatic exercises."
• "Very well rounded/comprehensive approach to helping in reducing the risk of lymphedema."
• "Love the self-care tips."
• "Looked at many lectures on lymphedema but none as clear as this system."
• "The option to read along, or just listen, while watching the videos. Great idea!"
• "Invaluable information. Great videos!-- pictures and movies help me understand both the lymphatic system and the lymphatic exercises."
• "Simple language provided clear understanding. The information was effective…very much so. The diagrams & process guides provided understanding & learning on a higher level."
• "Very effective exercises."
• "Love the information about what, when and how to recover and managing symptoms."

Loving Avatar Simulation Videos

• "I like the exercises!!! After I finished learning the exercises by following the videos, my pain and soreness were much better."
• "Videos are very helpful in teaching how to do the exercises. It is nice that I can go back and watch it again & again. I am glad that patients can have it at home. I love the contents & hope patients can get it sooner. I enjoyed the videos a lot."
• "I love the videos that show the anatomy & fluid flow & deep breathing. I also love the lymphatic system video."
• "The videos of how to perform the lymphatic exercises were very easy to follow."
• "Videos are excellent-you could do as you watched."
• "Love the avatar videos. You can follow the videos and do the exercises."
• "It was helpful to have an animated model of the exercises, rather than a sheet with merely pictures of the exercises."
• "I love to follow the daily videos to do the exercises."

Skills Building

• "It made me realize that I can manage the loss of strength in my right arm and may be able to manage the numbness and tingling.  I will be able to help myself."
• "Being on this study allowed me to do something for myself, really take care of myself and focus on being healthy."
• "It helped me realize that I had excess fluid.  My arms got lighter each time I did the exercises.  My arms began to feel less heavy.  It noticed it in my clothes as well."
• "It help me to understand more about all my symptoms, and how to manage them with the exercises."

Perceived Ease

• "This is a very easy study and the videos helped to complete the exercise."
• "I can repeat & review particular sections whenever and wherever I want."
• "I like the fact that I can go to the site at any time even when I travel."
• "The [lymphatic] exercise were easy and could be completed anywhere.  According to my measurements there was a decrease in fluid. That was good news."
• "The exercises were easy to do and remember. If I noticed my arm was more stiff than usual, I would do the exercises more and they helped."
• "It is not about whether I can do it (self-care) or I feel I can do it. The breathing and pumping exercises (daily lymphatic exercise) are easily to do and I feel better after doing them. So, I do it every day."

Perceived Effectiveness

• "I personally feel the exercise helped with the pain."
• "The exercises made my arm feel a lot better."
• "The exercise really helped increase my range of motion and was effective for decreasing my pain. I do the exercises every day."
• "The exercises definitely helped reduce pain and increase mobility."
• "The [lymphatic] exercise really helped increase my range of motion and was effective for decreasing my pain. I do the exercises every day."
• "The [lymphatic] exercise made my arm feel a lot better."

Psychological Benefits: Fear and Anxiety Relief

• "It afforded me the opportunity to feel better about myself. I was actually doing something to alleviate the anxiety about having symptoms and now I feel more in control of managing my physical and mental state."

Enjoy Doing the Exercises

• "I enjoyed the exercises!"
• "The exercises that I have been doing in this study helped me to gain strength and mobility in the affected limb even after I stopped physical therapy. I also found the exercises fun and enjoyable."

Previous Patients’ Evaluation of The-Optimal-Lymph-Flow Program

Fu, M.R., Axelrod, D., Guth, A., Cartwright- Alcarese, F.,Qiu, Z., Goldberg, J., Kim, J., Scagliola, J., Kleinman, R., Haber, J., &(2014). Proactive approach to lymphedema risk reduction: a prospective study. Annals of Surgical Oncology, 21(11), 3481-3498. Online First. DOI: 10.1245/s10434-014-3761-z

Empowerment

• “Being aware of lymphedema risk and informed about it helped me tremendously. I didn’t know what lymphedema was... I felt more in control rather than just hoping I would not get lymphedema. I was doing something to prevent it. It gave me a sense of empowerment.”
• “The best thing I have done for myself was to participate in The-Optimal-Lymph-Flow program. I only had 1 node removed. I thought that I am fine. During the radiation, I had slight swelling in my arm and I started religiously doing the breathing and pumping exercises. It worked and now I am doing the exercises every day because I feel good after doing the exercises. Without the program, I probably would be like my friend who has a huge arm now.”
• “I truly believe that participating in The-Optimal-Lymph-Flow program has been the pillar of strength for me following my mastectomy and lymph node dissection. The program enabled me to feel armed with knowledge and preventive measures to keep me from getting lymphedema.”

Easy to Do

• “It is a simple program and awareness of the result is also motivating."
• “I was very pleased that I could reduce my risk with very simple techniques (breathing, pumping, & walking).”
• “The pumping & breathing are something I can do. I can do more and feel better.”

Skills Building

• “Wonderful to have been aware before surgery of the exercises and get into the habit of doing them. After surgery, I didn’t have to review the direction and just began to do what I had been doing already.”
• “I am doing the right exercise (breathing and pumping) on the daily basis. I feel good and I feel that I owe it to myself.”
• “Being aware of factors that contribute to developing lymphedema and specific measures to alleviate symptoms has been instrumental in reducing any swelling. I have experienced and have motivated/aware of making choice to reduce my risk.”

Psychological Benefits: Fear and Anxiety Relief

• “This program was wonderful for not making me feel like a victim and being able to take charge of my own feeling.”
• “…eased my concerns about lymphedema.”
• “Give me more confidence and motivation to get better.”
• “Helps me to be more aware of having cancer and understanding the way it is affecting my day-to-day living. The process of measurement and follow-ups are essential to maintain good health. I have a whole new outlook on life.”

Forget Doing the Exercises

• “In the beginning I followed the directions for breathing and pumping and other precautions carefully. After about 4 months I became casual because I feel very good.”
• “I forget doing the exercises a lot because my arm feels good.”