Pain buddy: A novel use of m-health in the management of children's cancer pain
Introduction
Over 12,000 children are diagnosed with cancer every year in the United States [1], and existing research indicates that the majority of these children experience troubling symptoms that include pain, fatigue, and nausea [2]. Unfortunately, children with cancer not only suffer from distressing symptoms related to the disease process, but also suffer from symptoms related to the treatment for the disease. Indeed, given the aggressive protocols children being treated with chemotherapy go through, they often experience painful conditions such as mucositis and peripheral neuropathy [3]. Uncontrolled pain not only has significant negative psychosocial effects, but also modulates the physiological pain response, resulting in sensitization and potentially deleterious effects on physiological and immune function [4]. Unrelieved symptoms related to either cancer or chemotherapy also lead to poorer quality of life, including increased distress [2]. Unfortunately, evidence suggests that cancer pain and symptoms are undertreated in most children [3], [5], [6], [7], [8], [9], and there are few controlled studies in this area.
Although parents and children who suffer from cancer report that pain is a significant concern, pain assessment throughout cancer treatment is not performed systematically [3], [10], [11], [12] and without accurate data, physicians are unable to intervene appropriately. Additional barriers to treatment of pain in children with cancer include misunderstanding of use of analgesia in children (i.e., fears of addiction) and lack of understanding of pain expression in children [10], [12], [13]. This is particularly relevant to management of symptoms in the home setting by parents, who have been shown to significantly under treat children's pain [3], [14]. Unfortunately, there is an extreme dearth of research into children's cancer symptom management, particularly with regard to effective pain interventions. Moreover psychosocial interventions, particularly skills-based training, are effective for cancer pain and symptoms for adults and children [15], [16], yet are not easily accessible by patients.
Recently there has been a national push toward involving information technology in health care, such as electronic medical records, personal health records, and real-time decision-support systems [17], [18], [19]. The growth in pervasive computing and wearable technology has led to the field of m-Health, defined as “mobile computing, medical sensor, and communications technologies for health-care” [20], [21]. Accordingly, there is a growing literature of the impact of m-Health technologies, particularly involving the management of pain. Indeed, there is empirical evidence that the use of computer-based decision-support positively impacts management of chronic pain in adults [22] and can lead to significant improvements in overall clinical care [22], [23], [24], [25]. Real-time pain assessment and decision-support guiding treatment implemented via mobile technology (e.g., smartphones, tablets) provides two innovative, key pathways to the translation of pain management guidelines to practice for cancer patients. First, the ability to communicate with children and families electronically (e.g., web-based assessment and intervention, text messaging, email notifications) is a simple, efficient system and over half of teens in the U.S. have mobile phones and over a third report using text messaging [26] and these numbers are increasing. Electronic communication is beginning to be used as a modality to engage teens in their healthcare [27], [28], [29], [30], and such programs are very well-received [28]. Second, electronic means of assessment have been shown to greatly increase adherence to monitoring health information data [31].
To date, m-Health programs have been developed with a specific focus on pain assessment [32]. Both children and adults show high adherence rates to completion of electronic pain diaries for a variety of illnesses that involve pain, including cancer [33], [34]. There is some evidence that use of pain diaries to track chronic pain leads to improved patient adherence to treatment recommendations and additional data provided to health care providers to use for treatment decision-making [35]. Moreover, asking patients to recall their pain experience over the period of time leading up to their present medical visit (i.e., retrospective pain reporting) has been shown to be subject to bias and is inferior to real time measurement of pain using ecological momentary assessment approaches (i.e., electronic pain diaries) [36]. Despite the growth of m-Health programs focused on pain assessment; to date, little focus has been on capitalizing on pervasive computing technology to deliver interventions for pain management.
Because of changes in the U.S. healthcare system, there has been a shift in the management of care of cancer patients from the hospital to the home [37]. This shift has resulted in improved satisfaction among patients and families; however, it has come with an added burden of pain management by parents and caregivers in home setting, who often have little education regarding pain and pain management [38]. Pain management in children in the hospital setting has greatly improved in the past several decades [39], though in the home setting, there is growing evidence that children's pain is poorly managed [3]. Thus, the under management of children's pain in the home setting provides an avenue for targeted research that incorporates electronic means of assessment and intervention that allows children to stay in the home setting to maximize satisfaction and quality of life. Moreover, there is a dire need to focus on children undergoing cancer treatment, as this vulnerable population has been neglected in the literature on behavioral management of pain and stress.
Section snippets
Development of an electronic pain management program: Pain Buddy
It is clear that management of children's cancer pain at home is in need of attention. The growing use of mobile technology, particularly among youth in the U.S., provides a promising means of merging engaging modalities for intervention with efforts to improve quality of life of children undergoing cancer treatment. Accordingly, the current focus of our program of research is development of an innovative m-Health application that provides remote monitoring of pain and symptoms and delivery of
Materials and methods
This project was approved by the Institutional Review Board at Children's Hospital of Orange County (CHOC Children's).
Phase I – development of Pain Buddy
Development of Pain Buddy resulted in an application that comprises:
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A symptom diary;
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An electronic communication tool;
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Cognitive and behavioral skills training for pain and symptom management;
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A three-dimensional (3-D) avatar that guides the child throughout the program.
Each of the components of Pain Buddy will be detailed in the following sections.
Discussion
Interventions that bridge the gap between knowledge and practice of pain management in children are needed, particularly in those undergoing cancer treatment, who experience high rates of pain due to illness and treatment procedures [2], [3], [5], [6], [9]. By merging mobile technologies with medicine, we can begin to bridge this gap in a manner that engages children and families in health care, provides needed data to healthcare providers, and equips children and families with tools to manage
Conclusion
The World Health Organization acknowledges that a significant proportion of cancer patients experience pain, and pain management efforts in this population are currently inadequate. In addition, due to aggressive treatment protocols, children with cancer are at high risk for the experience of treatment-related symptoms that worsen quality of life. Consistent with the growing trend and low-cost access of m-Health, Pain Buddy has the potential to address multiple gaps in the management of pain
Source of funding
This study was supported by a Mentored Research Scholar Grant from the American Cancer Society MRSG-13-053-01-PCSM (PI: MA Fortier).
Conflicts of interest
None declared for all authors.
Acknowledgments
The authors would like to acknowledge the students at the California Institute for Telecommunications and Information Technology (Calit2) at UC Irvine, who were involved in the development of the Pain Buddy program: Tyler Stevens, Raquel Fallman, Tina Chau, William Cook-Spirling, Masha Yamnitski.
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