Journal of Pediatric Hematology/Oncology:
Management of Pediatric Oncology Pain in the Home Setting: The Next Frontier
Fortier, Michelle A. PhD*,†; Sender, Leonard S. MD‡,§; Kain, Zeev N. MD, MBA*,∥
*Department of Anesthesiology and Perioperative Care
§Chao Family Comprehensive Cancer Center, University of California-Irvine
†Department of Pediatric Psychology
∥Department of Pediatrics, CHOC Children's Hospital
‡CHOC Children's Cancer Institute, Orange, CA
Reprints: Michelle A. Fortier, PhD, Children's Hospital of Orange County, 505 S. Main Street, Suite 940, Orange, CA 92868 (e-mail: email@example.com).
Received February 15, 2011
Accepted February 26, 2011
PEDIATRIC CANCER PAIN—SIGNIFICANCE OF THE PROBLEM
More than 12,000 children in the United States are diagnosed with cancer each year1 and existing research consistently indicates that pain, a modifiable variable, is a common, significant, and distressing symptom experienced by the majority of children with cancer. In fact, the World Health Organization guidelines for Cancer Pain Relief and Palliative Care in Children2 acknowledge the large proportion of cancer patients that experience pain and the “widespread inadequacy” of pain management efforts.2 The overwhelming majority of children undergoing treatment for acute lymphoblastic leukemia, the most common of childhood cancers, report pain throughout the first year of treatment after diagnosis, most frequently in the legs, abdomen, head/neck, and back.3,4 Children treated with chemotherapy often experience painful conditions, including mucositis, infection, and peripheral neuropathy due to the aggressive nature of treatment protocols.3 Treatment with radiation can cause pain from myelopathy (radiation-induced spinal cord injury), plexopathy (damage to peripheral nerves), and pain from skin irritation or burns. Children are also subjected to repeated painful procedures, such as lumbar punctures, bone marrow aspirations, and venipuncture and despite analgesic and anesthestic interventions for such procedures, a significant proportion of children report experiencing procedure-related pain throughout treatment.5,6 These data notwithstanding, there are extremely limited controlled studies of children's cancer pain or information regarding the use and effectiveness of pain management strategies in this population.
THE NEW FRONTIER: MANAGEMENT OF CHILDREN'S PAIN AT HOME
Owing to advances in therapeutic regimens and changes in the larger healthcare system, pediatric cancer patients currently spend less time hospitalized and more time in home settings.7 This shift in environment has led to increases in parent satisfaction and overall quality of life for patients and families; however, this shift also results in a transition of pain management responsibilities to parents, rather than with healthcare providers. This transition of pain management responsibilities is paralleled in many medical populations and has resulted in parents becoming largely accountable for management of children's acute and chronic pain in the home setting. Accordingly, this presents a need for investigators to focus on empirical investigations of the practice of pain management at home by parents. Unfortunately, review of the literature shows extremely few studies targeting assessment of pain and pain management in pediatric cancer patients in the home setting. In the pediatric oncology literature, 2 studies were identified. Gedaly-Duff et al4 identified pain as a primary symptom after chemotherapy in children at home, however, pain management strategies were not assessed. Van Cleve et al3 examined pain and pain management strategies in children over the first year of diagnosis and treatment for leukemia and found pain to be a common concern but analgesic use at home to be relatively infrequent.
UNDERTREATMENT OF CHILDREN'S PAIN BY PARENTS AT HOME
Despite the lack of data on management of pain at home in children with cancer, evidence in related bodies of literature suggests that parents largely under treat children's pain. For example, in the surgical literature it has been documented that many parents do not provide their children with the prescribed analgesia after surgery,8–12 but not necessarily because their children were not experiencing pain.9 For example, well over half of parents have been shown to provide less than the prescribed number of analgesic doses,8,9,12 and parents under medicate children by providing less potent analgesics than prescribed or stretching the time between doses.13 Many reasons for the undertreatment of children's pain by parents have been suggested, including parental attitudes regarding analgesics, fears of medication dependence, lack of understanding of the presentation of pain in young children, or belief that analgesics should be used only as a last resort.8,9,13,14 In fact, research by our group has shown that parents provide very few doses of analgesics despite significant postoperative pain,15 and that fears and misconceptions about analgesic use for children are frequent16 and are related to the undertreatment of children's pain in the home setting.17 Thus, despite the widespread availability of analgesic interventions, children are at risk for undertreatment of pain at home by parents. What this body of literature shows, therefore, is that there is a wide gap in the translation of scientific knowledge of children's pain management to parental management of children's pain at home.
RECOMMENDATIONS: A CALL FOR RESEARCHERS
There is sufficient evidence that the majority of children experience pain during their cancer trajectory and that for many of these children, pain is moderate to severe in nature. Moreover, because children with cancer are spending less time in the hospital and more time at home, parents are primarily responsible for managing children's cancer-related pain. Parallel bodies of research suggest that despite recommendations, parents may struggle with providing adequate analgesia to children in home settings. Given the number of children diagnosed with cancer in the United States each year, this translates into tens of thousands of children potentially suffering needlessly in pain every year. Accordingly, there is a pressing need for investigators to focus research efforts on parental management of children's cancer pain at home.
Research suggests that parents harbor many misconceptions about analgesic medication for children, such as fears of addiction and beliefs that medication works better the less often it is used. However, to date, no one has empirically examined the parental decision-making process or behavioral practices of managing their children's cancer-related pain. Moreover, unlike acute pain after surgery, cancer pain is likely to be recurrent, ongoing, and associated with a broader context of psychosocial issues related to caring for a child with a serious illness. Thus, studies are needed to better understand the potential burden that managing a child's recurrent pain places on parents, the factors that relate to administration of pharmacological agents to children by parents, and behavioral pain management strategies used by parents of children with cancer. Early studies of adult cancer patients showed that significant concerns about addiction potential resulted in under medication, including caregivers withholding pain medications.18 In addition, despite a willingness to participate in family members' pain management, caregivers in an outpatient oncology clinic reported challenges and a high level of distress in participating in activities related to pain management.19 Family members report lacking in education and preparation to make such difficult decisions.20 Current studies assessing these issues in parents of pediatric patients are needed.
Parents clearly need to be targeted in terms of interventions to improve management of children's cancer pain; however, it is premature to design such interventions until the mechanisms behind parental undertreatment of pain are clear. Therefore, this commentary serves as a call to researchers to focus efforts on more systematically assessing pediatric cancer pain and parent pain management efforts in the home setting. Pediatric cancer patients are an extremely vulnerable population and all available efforts ought to be directed to improving pain management, particularly given the availability of interventions in many areas. Epidemiological research indicates that minorities, females, and the elderly are all at risk for undertreatment of cancer pain.21 We assert that unfortunately, children would also be included in this high-risk category if only they had been included in research.
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