© Springer International Publishing Switzerland 2016
David Alberts, Maria Lluria-Prevatt, Stephanie Kha and Karen Weihs (eds.)Supportive Cancer Care10.1007/978-3-319-24814-1_1616. Cancer Survivorship in the Digital Age
(1)
Associate Vice President for Health Equity and Inclusion, University of Utah Health Sciences Center, HSEB Suite 5515, 26 South 2000 East, Salt Lake City, UT 84112, USA
(2)
Cancer Health Equity, Huntsman Cancer Institute, HSEB Suite 5515, 26 South 2000 East, Salt Lake City, UT 84112, USA
(3)
Medicine, University of Utah School of Medicine, HSEB Suite 5515, 26 South 2000 East, Salt Lake City, UT 84112, USA
16.1 The Problem
The diagnosis of cancer has surpassed heart disease as the greatest cause of morbidity and mortality for certain age groups in the USA [1]. Once a diagnosis is inextricably linked to mortality, this array of illnesses falling under the umbrella of cancer is now increasingly associated with survival [2]. The number of cancer survivors in the USA is growing [3]. The two most prevalent cancer diagnoses found in this blend of survivorship, outside of nonmelanoma skin cancer, are persons with a history of breast or prostate cancer [4]. Improvements in survivorship have been achieved for most malignancies afflicting children or adults. Some of these improvements have been, albeit, modest [5].
16.2 Evidence
The recognition of cancer’s impact beyond the acute disease, its diagnosis and treatment, and beyond the individual patient has been unequivocally documented in the literature. Optimizing survivorship has emerged relatively recently as an area of interest for the medical community [6]. Having been championed by patients and their families for decades, these efforts may be seen as a harbinger for the growing emphasis on patient voice as a measure of quality and a critical component in improving health outcomes.
16.3 Ongoing Research
The rapid rise of information technology has been unparalleled [7]. Once thought to be the domain of Star Trek, there is a current competition to develop the famous Tricorder, a portable, wireless device that fits in the palm of your hand and can diagnose and monitor a host of health conditions, all as if with the wave of a wand [8]. Telemedicine, telehealth, e-medicine, and digital medicine are all variants on a common theme—using of telecommunications technology to address healthcare needs [9]. The variety of approaches is staggering. In this chapter, I will define and discuss telehealth interventions that have been documented to make a difference in cancer survivorship, outline possible future interventions, and discuss evaluation modalities.
Cancer survivorship begins at the time of diagnosis [10]. Cancer impacts the patient, the survivor, and her/his family, friends, and community—also known as the co-survivors [11]. Addressing the critical concerns of the survivor and the co-survivor requires interventions that target the survivor/co-survivor, the healthcare team, and the healthcare system within which the survivor receives care. Telehealth approaches can impact each of these critical domains.
Factors of concern to the survivor and co-survivor are:
Demystification of the disease process—what may I expect? Is this normal?
Access to successful low-cost, low-side-effect interventions that can prevent and/or address long- and short-term treatment side effects—what can be done to help me feel better?
Prescription of evidence-based cancer prevention, primary and secondary—screening, measures—what can I do to prevent this cancer or any other cancer from entering my life in the future?
Healthcare professionals require support in order to:
Stay current on high-value survivorship care—what works? What do I recommend?
Care for survivors in underserved communities
Engage survivors/co-survivors toward cancer clinical trials
The healthcare system is increasingly strained and requires support to:
Implement health system changes to deliver optimum care—how do I integrate these recommendations into my “7-min” visit? How do I help my patient navigate the morass of options and the obstacles of the healthcare system?
Provide on-demand care and education
Meet the multicultural needs of our increasingly diverse population
16.4 Solutions
From our work with long-term cancer survivors, women with a history of breast cancer for 5 years or more living in urban and rural settings, the ongoing side effects of depression, anxiety, and fatigue were prevalent. Survivors’ number one request to address these needs was knowledge. They sought educational interventions to ameliorate their fear which was seen as the root of their symptoms [12].
Demystification of the disease process that addresses expectations and the wide range of new normal possibilities provide survivors with a better understanding of the landscape that they are now facing [13]. Much of what is accomplished in the clinical encounter is education. Increasing time pressure along with considerations of the principles of adult learning may induce us to look more closely at group models of both education and care [14]. Utilizing telemedicine technologies to facilitate access to education can improve access to the “remedy” while bridging to at-need populations that would otherwise remain under the radar screen and underserved.
Telehealth interventions may also be utilized to provide direct care [15]. Survivors seek successful low-cost, low-side-effect interventions that can prevent and/or address long- and short-term treatment side effects. Survivors want to feel better. Although a compendium of long- and short-term side effects with therapeutic interventions is beyond the scope of this work, an example may provide a helpful illustration.
Mrs. J is a 42-year-old woman, single mother of two children ages 10 and 6, and she also teaches 4th grade. She is living in a community approximately 90 min from the cancer treatment center and is a survivor of stage II breast cancer that was incidentally discovered when she sought care for a bilateral tubal ligation. She successfully completed surgery, chemotherapy, and radiation and found herself ready to face the “rest of her life left to wonder when the other shoe would drop.” She had “survived” chemo by eating comfort food and gaining nearly 30 lb. No one had spoken with her with concern about the increase in weight during treatment. Mrs. J thought the weight gain was an inevitable result of her premature menopause due to the chemotherapy and that she’d quickly lose it like she’d lost her “baby fat” when she heard her oncologist’s remark that “losing the weight would be a good idea” at her last oncology visit. Her follow-up had been primarily relegated to her primary care physician whom she had not met yet as her health plan had just assigned her a new primary care physician. She generally had seen her primary care physician only intermittently as she had seen herself as healthy and she did not wish to accrue any “unnecessary” healthcare costs.
After the first posttreatment visit, she began to relook at herself and found that she was “cancer-free” but not symptom-free, not healthy. She noted joint pain, decreased mobility and balance, prediabetes, elevated cholesterol, and sleep apnea. In addition, she related being very upset to now understand that since she is so young, her breast cancer may be hereditary and she may have “contaminated” her children. She does not wish to return to the cancer care center because it reminds her of being ill; furthermore, the round-trip travel of about 3 h is difficult to manage alongside the demands of her family and her work.
Telemedicine interventions may help address many of these concerns. Home monitoring units may be utilized to help her address many of her clinical concerns. A home sleep study can be conducted and has the potential for improved accuracy due to recording sleep in the patient’s own familiar setting [16]. Although the patient has some awareness that weight loss means modulating her oral intake and increasing her physical activity, she does not have the ready knowledge and/or tools to help her meet her goals. Providing the patient with a home health telemedicine unit will allow her to connect to her virtual healthcare team for telenutrition education [17], telemovement group sessions [18], and telediabetes prevention [19] visits. These programs can be conducted as individual point-to-point sessions but have the potential for nurturing virtual communities that serve to learn and experience changed behavior together. The electronic connection at her primary care doctor’s office may be used for direct provision of services such as telegenetics, telebehavioral health, and ongoing survivorship follow-up and high-risk management to include evidence-based cancer prevention, such as primary and secondary screening, which may include mobile technology reminders and support [20]. These high-tech and high-touch tools can support the patient’s path to health through improved mental health, discovery of breast cancer hereditary risk, weight loss, improved mobility and balance, decreased fasting glucose, decreased lipids, and resolution of sleep apnea.
Integration of telemedicine technologies as described above into cancer survivorship care has not been fully implemented and actualized. The pieces are present; however, full integration remains a vision for the future.
Home monitoring technologies are increasingly available and hold great promise. Tools from glucometers, to pulse oxygen monitors, to home sleep studies are increasingly commercially available. Integration into the electronic health record to facilitate access of data to the patient’s healthcare team is variable. Monitoring tools require FDA approval if used as clinical data that the patient shares with her/his clinical team. Use of these tools may require calibration and reliability assessments as a clinical tool.
Data regarding teleconsultations are available in some settings. Generally, teleconsultations may be conducted in real time, that is, as fully interactive videoconferenced consultations that may include attachments that enable a full physical exam, with the exception of palpation, to be conducted or as store-forward sessions that are generally focused clinical questions that are utilizing a digital photo or image to be interpreted, e.g., teledermatology or teleophthalmology: virtual retinal screenings. Our group has experience in telegenetics consultations which are conducted as real-time sessions and allow the patient to access cancer genetics counseling at a distance. This successful real-time application bridges geographic distance, decreases child and/or elder-care costs, decreases loss of wages due to work absence, and improves clinical efficiencies and access to care [21].
Telebehavioral health has a long history of success as a telemedicine application. Models utilizing mid-level providers or psychiatrist for medical management have all demonstrated clinical care improvements. Being primarily a “talk is therapy” telemedicine application, telebehavioral health has been more easily translated into the virtual setting by means of high-fidelity digital videoconferencing technologies. Whereas the patient and the behavioral health specialist can typically sit in the same room facing each other to address the patient’s needs, the patient and telebehavioral health specialist can similarly sit facing each other to address the patient’s needs by virtue of the presence of a camera and a plasma screen [22].