mHealth self-care interventions: managing symptoms following breast cancer treatment

Mei R Fu, Deborah Axelrod, Amber A Guth, Kavita Rampertaap, Nardin El-Shammaa, Karen Hiotis, Joan Scagliola, Gary Yu, Yao Wang, Mei R Fu, Deborah Axelrod, Amber A Guth, Kavita Rampertaap, Nardin El-Shammaa, Karen Hiotis, Joan Scagliola, Gary Yu, Yao Wang

Abstract

Background: Many women suffer from daily distressing symptoms related to lymphedema following breast cancer treatment. 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. 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-care, patient-clinician communication, and access to health information. The-Optimal-Lymph-Flow health IT system (TOLF) is a patient-centered, web-and-mobile-based educational and behavioral mHealth interventions focusing on safe, innovative, and pragmatic electronic assessment and self-care strategies for lymphedema symptom management. The purpose of this paper is to describe the development and test of TOLF system.

Methods: The development of TOLF was guided by the Model of Self-Care for Lymphedema Symptom Management and designed based on principles fostering accessibility, convenience, and efficiency of mHealth system to enhance training and motivating assessment of and self-care 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 (BCLE-SEI), a usability testing and a pilot feasibility testing of mHealth self-care 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-care 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.

Conclusions: TOLF system using the electronic version of the instrument is able to assess patients' lymphedema symptoms with high reliability and validity. TOLF system is also able to deliver self-care interventions to enhance self-care strategies for lymphedema symptom management.

Keywords: Self-care; breast cancer survivor; breast neoplasms; lymphedema; symptoms.

Conflict of interest statement

Conflicts of Interest: The authors have no conflicts of interest to declare.

Figures

Figure 1
Figure 1
Model of self-care for lymphedema symptom management.
Figure 2
Figure 2
Screenshots from avatar simulation videos.

References

    1. Paskett ED, Naughton MJ, McCoy TP, et al. The epidemiology of arm and hand swelling in premenopausal breast cancer survivors. Cancer Epidemiol Biomarkers Prev 2007;16:775-82. 10.1158/1055-9965.EPI-06-0168
    1. Armer JM, Stewart BR. Post-breast cancer lymphedema: incidence increases from 12 to 30 to 60 months. Lymphology 2010;43:118-27.
    1. American Cancer Society (ACS). Breast cancer facts & figures 2015-2016. Atlanta: American Cancer Society, Inc. 2015.
    1. Fu MR, Axelrod D, Cleland CM, et al. Symptom report in detecting breast cancer-related lymphedema. Breast Cancer (Dove Med Press) 2015;7:345-52. 10.2147/BCTT.S87854
    1. Langer I, Guller U, Berclaz G, et al. Morbidity of sentinel lymph node biopsy (SLN) alone versus SLN and completion axillary lymph node dissection after breast cancer surgery: a prospective Swiss multicenter study on 659 patients. Ann Surg 2007;245:452-61. 10.1097/
    1. Boneti C, Korourian S, Bland K, et al. Axillary reverse mapping: mapping and preserving arm lymphatics may be important in preventing lymphedema during sentinel lymph node biopsy. J Am Coll Surg 2008;206:1038-42; discussion 1042-4. 10.1016/j.jamcollsurg.2007.12.022
    1. Stanton AW, Modi S, Mellor RH, et al. Recent advances in breast cancer-related lymphedema of the arm: lymphatic pump failure and predisposing factors. Lymphat Res Biol 2009;7:29-45. 10.1089/lrb.2008.1026
    1. Armer JM, Radina ME, Porock D, et al. Predicting breast cancer-related lymphedema using self-reported symptoms. Nurs Res 2003;52:370-9. 10.1097/00006199-200311000-00004
    1. Cormier JN, Xing Y, Zaniletti I, et al. Minimal limb volume change has a significant impact on breast cancer survivors. Lymphology 2009;42:161-75.
    1. Ryan JC, Cleland CM, Fu MR. Predictors of practice patterns for lymphedema care among oncology advanced practice nurses. J Adv Pract Oncol 2012;3:307-18.
    1. Ryan JC, Cleland CM, Fu MR. Predictors of practice patterns for lymphedema care among oncology advanced practice nurses. J Adv Pract Oncol 2012;3:307-18.
    1. Fu MR, Deng J, Armer JM. Putting evidence into practice: cancer-related lymphedema. Clin J Oncol Nurs 2014;18 Suppl:68-79. 10.1188/14.CJON.S3.68-79
    1. Shi S, Lu Q, Fu MR, et al. Psychometric properties of the Breast Cancer and Lymphedema Symptom Experience Index: The Chinese version. Eur J Oncol Nurs 2016;20:10-6. 10.1016/j.ejon.2015.05.002
    1. Fu MR, Ridner SH, Hu SH, et al. Psychosocial impact of lymphedema: a systematic review of literature from 2004 to 2011. Psychooncology 2013;22:1466-84. 10.1002/pon.3201
    1. Fu MR, Rosedale M. Breast cancer survivors' experiences of lymphedema-related symptoms. J Pain Symptom Manage 2009;38:849-59. 10.1016/j.jpainsymman.2009.04.030
    1. IOM. Crossing the quality chasm: a new health system for the 21st century. Washington, DC.: Institute of Medicine, 2001.
    1. Fu MR, Chen CM, Haber J, et al. The effect of providing information about lymphedema on the cognitive and symptom outcomes of breast cancer survivors. Ann Surg Oncol 2010;17:1847-53. 10.1245/s10434-010-0941-3
    1. Fu MR, Axelrod D, Haber J. Breast-cancer-related lymphedema: information, symptoms, and risk-reduction behaviors. J Nurs Scholarsh 2008;40:341-8. 10.1111/j.1547-5069.2008.00248.x
    1. Finkelstein J, Knight A, Marinopoulos S, et al. Enabling patient-centered care through health information technology. Evid Rep Technol Assess (Full Rep) 2012;(206):1-1531.
    1. Shortliffe EH, Sondik EJ. The public health informatics infrastructure: anticipating its role in cancer. Cancer Causes Control 2006;17:861-9. 10.1007/s10552-006-0028-4
    1. Centers for Medicare & Medicaid Services. Electronic Health Records (EHR) Incentive Programs. Available online:
    1. Hoffman AJ, Brintnall RA, Brown JK, et al. Virtual reality bringing a new reality to postthoracotomy lung cancer patients via a home-based exercise intervention targeting fatigue while undergoing adjuvant treatment. Cancer Nurs 2014;37:23-33. 10.1097/NCC.0b013e318278d52f
    1. Wantland DJ, Portillo CJ, Holzemer WL, et al. The effectiveness of Web-based vs. non-Web-based interventions: a meta-analysis of behavioral change outcomes. J Med Internet Res 2004;6:e40. 10.2196/jmir.6.4.e40
    1. Smith L, Weinert C. Telecommunication support for rural women with diabetes. Diabetes Educ. 2000;26:645-55. 10.1177/014572170002600412
    1. Finkelstein J, O'Connor G, Friedmann RH. Development and implementation of the home asthma telemonitoring (HAT) system to facilitate asthma self-care. Stud Health Technol Inform. 2001;84:810-4.
    1. Fu MR, Axelrod D, Guth A, et al. A web- and mobile-based intervention for women treated for breast cancer to manage chronic pain and symptoms related to lymphedema: randomized clinical trial rationale and protocol. JMIR Res Protoc 2016;5:e7. 10.2196/resprot.5104
    1. Fu MR, Axelrod D, Guth AA, et al. Proactive approach to lymphedema risk reduction: a prospective study. Ann Surg Oncol 2014;21:3481-9. 10.1245/s10434-014-3761-z
    1. Ridner SH, Fu MR, Wanchai A, et al. Self-management of lymphedema: a systematic review of the literature from 2004 to 2011. Nurs Res 2012;61:291-9. 10.1097/NNR.0b013e31824f82b2
    1. Fu MR, LeMone P, McDaniel RW. An integrated approach to an analysis of symptom management in patients with cancer. Oncol Nurs Forum 2004;31:65-70. 10.1188/04.ONF.65-70
    1. Fu MR. Breast cancer survivors' intentions of managing lymphedema. Cancer Nurs 2005;28:446-57; quiz 458-9. 10.1097/00002820-200511000-00007
    1. Fu MR. Cancer survivors' views of lymphoedema management. J Lymphoedema 2010;5:39-48.
    1. Kreuter MW, Farrell DW, Olevitch LR, et al. Tailoring health messages: customizing communication with computer technology. Mahwah, NJ: Lawerence Eribaum Associates, Inc.; 2000.
    1. Nielsen J, Landauer TK. A mathematical model of the finding of usability problems. In: Ashlund S, Mullet K, Henderson A, et al. editors. Proceedings of the INTERACT'93 and CHI'93 Conference on Human Factors in Computing Systems; Apr 24-29; Amsterdam, The Netherlands. New York: Association for Computing Machinery; 1993.
    1. Bright TJ, Bakken S, Johnson SB. Heuristic evaluation ofeNote: an electronic notes system. AMIA Annu Symp Proc 2006;2006:864.
    1. Dillman DA, Smyth JD. Design effects in the transition to web-based surveys. Am J Prev Med 2007;32:S90-6. 10.1016/j.amepre.2007.03.008
    1. Nusbaum NJ. The electronic medical record and Patient-centered care. Online J Public Health Inform 2011;3.
    1. Hayslett MM, Wildemuth BM. Pixels or pencils? The relative effectiveness of web based versus paper surveys. Library and Information Science Research 2004;26:73-93. 10.1016/j.lisr.2003.11.005
    1. Beling J, Libertini LS, Sun Z, et al. Predictors for electronic survey completion in healthcare research. Comput Inform Nurs 2011;29:297-301; quiz 302-3. 10.1097/NCN.0b013e3182065fbb
    1. Cotten SR, Gupta SS. Characteristics of online and offline health information seekers and factors that discriminate between them. Soc Sci Med 2004;59:1795-806. 10.1016/j.socscimed.2004.02.020
    1. Sollenberger RL. Human-in-the-Loop simulation evaluating the collocation of the user request evaluation tool, traffic management advisor, and controller-pilot data link communications: experiment I - tool combinations. Retrieved July 20, 2016. Available online:
    1. Zaidan OF, Callison-Burch C. Feasibility of human-in-the-loop minimum error rate training. In: Proceedings of the 2009 Conference on Empirical Methods in Natural Language Processing. Stroudsburg: Association for Computational Linguistics, 2009;52-61.
    1. Dillon TW, McDowell D, Salimian F, et al. Perceived ease of use and usefulness of bedside-computer systems. Comput Nurs 1998;16:151-6.
    1. Davis FD. Perceived usefulness, perceived ease of use, and user acceptance of information technology. MIS Quarterly, 1989;13:319-40. 10.2307/249008
    1. Lewis JR. IBM computer usability satisfaction questionnaires: Psychometric evaluation and instructions for use. International Journal of Human-Computer Interaction 1995;7:57-78. 10.1080/10447319509526110
    1. Lally P, van Jaarsveld CH, Potts HW, et al. How are habits formed: modelling habit formation in the real world. Euro J Soc Psychol 2010;40:998-1009. 10.1002/ejsp.674
    1. Gardner B, Lally P, Wardle J. Making health habitual: the psychology of 'habit-formation' and general practice. Br J Gen Pract 2012;62:664-6. 10.3399/bjgp12X659466

Source: PubMed

Sponsors et collaborateurs

Les conditions médicales

Interventions en matière de drogue

3
S'abonner