Areas of use
1. Rohan et al.
2. Kato et al.
Improves medication adherence
Provides real-time objective data
Assists family with organizing medications
May improve safety of medication regimen
May improve self-efficacy for following medication regimen
Few applications have been designed for children and adolescents
Free applications have not been examined in research
May increase physical activity levels
No research to date
May improve diet and nutritional intake
No research to date
Stinson et al.
Feasible and acceptable to children, publicly available app
Lack of data on whether it improves pain management
Summary of research studies investigating electronic monitoring eHealth or mHealth technologies in pediatric oncology
Areas of use
1. Ewing et al.
2. Goodenough et al.
3. Jones et al.
4. Sigurdardottir et al.
5. Stinson et al.
6. Stinson et al.
Quality websites provide valuable medical content
May improve communication with providers
May increase internal locus of control
Research is limited by small sample sizes
Many websites are poor quality
Many websites use a high reading level
Families may not access the website
1. Askins et al.
3. Cantrell et al.
Supplements in-person support
Families rate information as valuable
A variety of technologies can be utilized (phone, Internet, CD-ROM)
May improve problem-solving skills and increase feelings of support and hope
Research is limited by small sample sizes
Few randomized trials
Research is primarily qualitative
1. Coulson et al.
May provide emotional, informational, and esteem support, as well as tangible assistance
Easily accessible; convenient
Not limited by geographic location
Groups are not generally monitored by a professional
Group members may not respond
Difficulty maintaining relationships outside of online group
1. Anderson et al.
2. Holden et al.
3. Lewis et al.
May provide information and psychological support
Research is limited by small sample sizes
Greater benefit for women and spiritual individuals
1. Hardy et al.
2. Hardy et al.
3. Kesler et al.
May improve cognitive abilities on functional outcome measures
May increase brain activity in certain brain regions
Research is limited by small sample sizes
Few randomized controlled trials
Study results may not generalize to academic setting
1. Emmons et al.
2. Emmons et al.
May decrease smoking cessation rates compared to self-help
Similar cessation rates as in-person counseling
Users may not access website or utilize other support services (online chat)
1. Rabin et al.
2. Valle et al.
Increases levels of physical activity
May improve mood and other psychosocial outcomes
May promote weight loss
Professional not available to monitor engagement and safety
1. Blaauwbroek et al.
2. Poplack et al.
May improve provider-patient communication
May facilitate family doctor communication and follow-up
Promotes adherence to national survivorship recommendations
Logistical limitations of coordination with local family doctors
Summary of research studies investigating virtual reality eHealth technologies in pediatric oncology
Areas of use
Patients report qualitative positive experience and distraction from pain
Reduces observed pain via nurse report
May reduce anxiety as measured by pulse rate
Does not reduce pain, fear, or distress via patient or parent report
Technology is not easy to disseminate
1. Li et al.
2. Schneider et al.
May reduce distress during outpatient chemotherapy
May increase play behaviors during hospitalization
May decrease risk for depressive symptoms during hospitalization
Limited research to date
Technology is not easy to disseminate
Monitoring behaviors using the Internet and smartphone applications (apps) can assist children, adolescents, and parents in identifying patterns of behavior and help them achieve behavioral goals (Carels et al. 2005). There are several areas (medication adherence, physical activity, and nutrition) that have been targeted for electronic monitoring in pediatric cancer. Please see Table 20.1.
Medication Adherence and Safety
As home medication use increases, patients and families must manage the administration of many medications for cancer. Medication errors have been found to be common in children receiving medications at home (Walsh, et al. 2013), making the safety of medication administration an important priority. Moreover, adherence to cancer treatment regimens is an important clinical concern, as recent studies show that nonadherence with oral chemotherapy agents leads to significantly higher relapse rates (Bhatia et al. 2012, 2014). Technology may be used to help safely organize medications, monitor their use, and provide behavioral interventions to address barriers to adherence. Electronic monitoring of medication adherence has the advantage of providing real-time objective data from patients and there are several published examples of this application. In one study, Rohan et al. (2013) used electronic monitoring to describe patterns of adherence to early maintenance phase therapy for acute lymphoblastic leukemia and lymphoblastic lymphoma. Another adherence electronic monitoring tool is the action-adventure game Re-Mission created by Kato and colleagues (2008). Re-Mission was used in a randomized trial to increase children’s adherence to their chemotherapy regimen and those children who used the game reported a threefold increase in self-efficacy to manage their illness.
A number of other adherence enhancing apps are available to manage medication regimens for both Apple and Android devices, such as MyMedSchedule (www.medactionplan.com), MyMeds (www.my-meds.com), and MangoHealth (www.mangohealth.com) (Dayer et al. 2003; Gephart and Effken 2013). MyMedSchedule allows health professionals to input simple or complex medication regimens using existing medication databases that can then be uploaded to patients’ mobile devices (Dayer et al. 2003). Patients and providers can enable reminders, indicate missed dosages, and modify medication regimens as needed. MyMedSchedule stores medication regimens on a Health Insurance Portability and Accountability Act (HIPAA) compliant cloud server that can then be accessed online from any device. Such medication adherence apps have not yet been evaluated in pediatric oncology but may be appropriate for adolescent and young adult oncology patients.
Physical Activity and Nutrition
The number of personal activity monitoring apps and nutrition monitoring apps has grown exponentially during the past decade. More than half a million apps have become available since 2008 and more than half of these relate to physical activity (33 %) or nutrition (20 %) (West et al. 2012). Some electronic personal fitness monitors have expanded capabilities and include programs to monitor sleep, connect to the Internet, and interface with social networks. Nutrition apps are often combined with personal fitness apps and provide food tracking and nutrition analyses. While apps such as MyFitnessPal (www.myfitnesspal.com) have been promoted for young breast cancer survivors, at this time, there are no empirical data to indicate usefulness or patient perceived benefit. Research is in the initial phases of development and evaluation of physical fitness and nutrition apps for childhood cancer patients and survivors.
Electronic Reporting of Pain and Other Symptoms
Pain related to the disease process and from ongoing treatment is a very common experience of children with cancer (Van Cleve et al. 2004, 2012). Careful and systematic assessment and documentation of pain are required for pain to be adequately managed, especially in the home environment. Electronic pain diaries (e.g., smartphones and personal digital assistants) have become increasingly used in children and adolescents to document acute and chronic pain and are beginning to emerge in the cancer field. For example, Stinson and colleagues (2013) developed an iPhone application with a law enforcement theme called Pain Squad to collect data on pain intensity, duration, location, and impact (and encourage adherence with monitoring) in adolescents (ages 8–18 years) with cancer. The exciting potential use of mHealth technologies for monitoring pain is to facilitate communication with healthcare providers. Information that children enter into an app about pain and other symptoms could be transmitted to the healthcare team and subsequently lead to more timely and effective pain management.
Molly is an 11-year-old female with acute lymphoblastic leukemia who is in the maintenance phase of treatment. She has been reporting frequent headaches, limb and back pain, fatigue, and sleep problems. Molly’s medical team is not sure whether her symptoms are related to chemotherapy treatment only or whether there are other modifiable behavioral and social factors that might be contributing. Molly’s oncologist asks her about her preferences for using technology in her healthcare. Molly has an iPhone and is a frequent user of the Internet. She and her mom are interested in learning about apps that may help her. Her oncologist shows her the Pain Squad app on her iPhone and discusses how it might be useful to track her pain and other symptoms. After 3 weeks, Molly returns to clinic and her oncologist reviews her symptoms on Pain Squad. He notes that Molly is reporting pain almost every day and is experiencing significant distress with fatigue and sleep. They discuss additional strategies to help with her daily pain, and to reduce fatigue, and address nighttime sleep difficulties.
Internet Education and Interventions
As described in Chapter 6 on psychotherapeutic modalities, supportive psychosocial interventions have been developed for children with cancer and their parents to address high levels of stress at the time of diagnosis and throughout the course of treatment and recovery. The majority of psychosocial interventions are delivered in person; however, research on in-person interventions has been limited by relatively low rates of enrollment and low retention of parents and children (Peek and Melnyk 2010; Stehl et al. 2009). Barriers to research enrollment and traditional in-person interventions include participants’ feeling overwhelmed during the time of their child’s cancer treatment and being unwilling to commit the time necessary for structured interventions (Stehl et al. 2009). eHealth and mHealth may aid clinicians in providing evidence-based psychosocial intervention in more accessible formats through the course of treatment and survivorship. Please see Tables 20.1.
Internet Education and Coping Interventions
Diagnosis and Early Treatment
Pediatric Cancer Education
Providing children and caregivers with education about the child’s cancer diagnosis and planned medical regimen is a critical component in the care of children with cancer. Families are often overwhelmed at the time of diagnosis and unfamiliar with medical terminology, making initial patient and caregiver education difficult. Educational websites that compile relevant information on pediatric cancer may be able to address these concerns. As one example, the cooperative clinical trials of the Children’s Oncology Group, the world’s largest organization devoted to childhood and adolescent cancer research (www.childrensoncologygroup.org), makes medical information, research trials information, and information on coping with pediatric cancer available to patients and families. Other leading organizations such as the National Cancer Institute also distribute similar educational information (www.cancer.gov). There are dozens of other educational websites targeting parents and children or adolescents with cancer (Stinson et al. 2011). Unfortunately, the overall quality of many pediatric cancer educational websites is poor, with low desirability ratings and a reading level too high for most parents and adolescents to understand. Please see Table 20.3 and the Resources chapter 25 for a list of high-quality websites.
Several evidence-based web educational programs have been developed and evaluated by medical professionals and researchers. Earlier studies utilized CD-ROM technology to disseminate evidence-based programs and demonstrated good acceptability of these programs (Goodenough and Cohn 2004; Jones et al. 2010). More recent studies have turned to web-based programs. One group evaluated the favorability and impact on quality of life of a web-based educational and support intervention for families of children with cancer (Sigurdardottir et al. 2014). In this study, all participants (15 mothers, 12 fathers, and 11 children) rated the new website as favorable overall and mothers reported slightly improved cancer communication after the intervention as compared with baseline. Another study that evaluated the usability of a bilingual (English and French) Internet-based self-management program for adolescents with cancer and their parents found that the information presented on the website was appropriate, credible, and relevant (Stinson et al. 2014). Participants reported that having the program would have been extremely helpful when they were first diagnosed with cancer.
Despite patient and parent reported satisfaction with the various educational programs, studies have shown none or only modest improvements in communication or well-being for the families who utilized the programs. Further, all of the studies are limited by small sample sizes such that satisfaction and use of eHealth education programs may not generalize to the larger pediatric oncology population. For instance, Ewing et al. (2009) developed a web-based resource for children newly diagnosed with cancer and their families to provide psychosocial support but found that very few families accessed the website. The timing of when and how interventions are introduced may be critical in their utilization.
Studies show that patient and parent distress tends to be highest at the time of cancer diagnosis and during the initial stages of treatment (Myers et al. 2014). The need for psychological support and social resources may be greatest during this period of uncertainty and adjustment. Because in-person pediatric cancer support groups tend to be poorly attended during the initial stages of cancer diagnosis and treatment (Stehl et al. 2009), eHealth technologies provide an alternative modality for administering child and parent coping interventions and providing support.
A variety of eHealth interventions, from telephone support calls to interactive web-based programs, have been developed to promote coping in parents as well as patients (Bensink et al. 2008; Mayer et al. 2010; O’Conner-Von 2009). Technology such as the Apple Facetime app integrates the ease of telephone calls with videoconferencing through built-in phone and computer cameras and is available for download to a number of electronic devices. The Facetime app may provide advantages in pediatric oncology care regarding visual confirmation of reported symptoms and real-time multimedia communication between medical providers and families. However, some individuals may not be as comfortable with videoconferencing and thus individual preferences will likely dictate future use of this technology.
There have been a few examples in pediatric oncology of delivery of psychosocial interventions using information technology. Sahler et al.’s (2005) 8-session in-person problem-solving intervention (Bright IDEAS), designed to reduce distress in mothers of children with cancer, has been supplemented with handheld personal digital assistants (PDA) (Askins et al. 2009). In Askins et al. trial, both Spanish-speaking and English-speaking mothers (n = 197) of children with newly diagnosed cancer were randomized to traditional problem-solving therapy or problem-solving therapy + PDA programs. PDA devices were designed to provide a brief review of the problem-solving process, practice the five elements of the Bright IDEAS problem-solving approach, prompt the use of problem-solving skills, and record a daily log to record problems confronted as well as solutions. Their findings demonstrated significant positive change over time on psychosocial measures in Spanish- and English-speaking mothers in both groups.
Another web-based program, entitled the Hope Intervention Program (HIP), is an 8-week program designed to promote hope in childhood cancer survivors and was pilot tested with 6 female young adult survivors (Cantrell and Conte 2008). The intervention was delivered online with the use of educational software that included Web cameras and voice and text chat. Participants qualitatively rated the program as feasible, valuable, and promoting feelings of hope; however, no quantitative outcome data was available. Mayer and colleagues (2010) report developing an eHealth system that integrates psychosocial services for parents of children receiving hematopoietic stem cell transplant. The program entitled the Hematopoietic Stem Cell Transplantation-Comprehensive Health Enhancement Support System (HSCT-CHESS) includes information about stem cell transplant basics, caring for your child, working with healthcare providers, taking care of yourself, managing the household, as well as addressing family life, work, insurance, money, and legal issues. Currently, an ongoing randomized multisite controlled trial is evaluating the impact of this system on both parent and child HSCT recipients’ quality of life.
Despite the usability and feasibility data being promising on these web-based programs, the lack of published research, limited number of completed randomized trials, and small sample sizes precludes drawing conclusions on their potential benefit. There is a critical need for rigorous evaluation of web-based programs to promote child and family coping. The development and evaluation of psychosocial interventions using eHealth and mHealth platforms in pediatric cancer is only in its formative stages.
Internet and Support Networks
Treatment and Maintenance Therapy
Online Support Groups
The number of online support groups for pediatric cancer patients and their families has grown tremendously in recent years. Several online support websites are available for children and adolescents including 2bMe (www.2bme.org), Beyond the Cure (www.beyondthecure.org), Group Loop (www.grouploop.org), and Stupid Cancer (http://stupidcancer.com). These online support websites offer educational information on cancer-related topics ranging from appearance to nutrition to late effects of cancer and treatment. Most websites are designed for adolescents and some offer online chats and/or a monitored forum for adolescents to post personal stories and message with other adolescents. Professionally monitored forums and professionally facilitated online support groups like those offered on Group Loop are recommended, particularly for young adolescents, as professional monitoring can limit hostile exchanges, limit inaccurate or misleading medical information, and ensure timely responses to posts.
One online support website SuperSibs! (http://www.alexslemonade.org/campaign/supersibs) is designed to support 4-to 18-year-old brothers and sisters of children diagnosed with cancer. The SuperSibs website provides therapeutic tools (e.g., activities, words of support, home resources) to help siblings during and after their sibling’s cancer treatment. One study examined support-intended communication for three online support groups aimed at family members of children with cancer (Coulson and Greenwood 2012). Results revealed five types of social support contained within the online messages: emotional, informational, esteem support, and tangible assistance. A few disadvantages of the online support groups were also identified including a lack of response from group members and difficulty maintaining relationships outside the online group context.
Casey is a 14-year-old female who underwent a total resection of a juvenile pilocytic astrocytoma 18 months ago. At a routine follow-up visit, Casey and her mother meet with the clinic social worker and report concerns about friendships. Casey states that she wants to have more friends, but often feels socially isolated. Mom and Casey do not report any concerns about her mood or school performance. The social worker invites her to a teen support group for cancer survivors, but Casey lives 2 hours away from the clinic and it is not feasible for her to attend. Given the distance issues, her social worker discusses online resources including online support groups. Casey has an iPad and she and her mother express interest in learning more about an online support group that would meet Casey’s needs. She is provided with a list of teen-friendly support websites including Group Loop which is a monitored online support group for teenagers. At her next appointment, Casey reports that it has been helpful to read other teenagers’ stories on the online support websites and likes being able to chat online with other teenagers who have had cancer.
A social network is a social structure made of individuals or organizations that share one or more types of interdependency, such as friendship, common interests, work, knowledge, prestige, etc. (Masic et al. 2012). Global public social networks such as Facebook and Twitter are among the most popular social networks (see Social media Chapter 19 for more information). More than half of Americans who investigate health problems on the Internet get information about their treatment or medical condition via the Internet, and more than one third of Americans use social networks to obtain day-to-day information and support (Kuehn 2011). Given the popularity of social network websites, these websites have been used to target adolescents for cancer prevention and tobacco control initiatives (Struik et al. 2012), as well as provide forums for sharing personal stories. Unfortunately, the information made available on social networks is not regularly monitored and the quality and reliability are often questionable. There are several medical social network websites freely available to patients and their families including DailyStrength, CaringBridge, and CarePages (Masic et al. 2012). These social network websites allow patients and families to obtain information, create a profile to share stories, and make medical updates readily available to family and friends.