Treating cancer pain in children at home

Treating cancer pain in children at home


-Welcome, I’m Michelle Fortier And I’d like to thank parents and healthcare providers for listening to this talk today about a topic I’m very passionate about, which is improving quality of life in children during cancer treatment, with a particular focus on pain. I’m a licensed clinical psychologist, and I have a program of research on children’s pain management, with a particular focus on cancer pain. I also work clinically with kids with chronic pain through our pain management center at UC Irvine Health. I’m very pleased to be able to welcome parents and healthcare providers to this webinar series through the Dept. of Anesthesiology and Perioperative Care. In terms of pain in general, the statistics are quite staggering. A recent report by the Institute of Medicine titled Relieving Pain in America, puts the estimates at individuals affected by chronic pain at tens of millions. When we factor in the health consequences of chronic pain, including physical and social impacts, a recent report by John Hopkins suggest that the economic impact is at $635 billion. That number is just hard to fathom. We also know particular populations, including children and racial and ethnic minorities, can be affected by chronic pain more so than others. Children who have chronic pain tend to not be able to attend school, they are socially isolated and withdrawn, they may develop co-morbid illnesses, such as anxiety and depression, and overall have a worsened quality of life. So clearly, pain is an important area for our health focus. In terms of cancer pain, in particular, the National Cancer Institute indicates that over 300,00 children are affected by cancer in the United States. We know very little about cancer pain in children because we, unfortunately have not focused our research efforts much in this area, but what we do know is that most – if not all – children we experience some pain during their cancer treatment. Children survive cancer at much higher rates, and this is do to the increasingly aggressive nature of treatment protocols. In fact, recent data suggests that children are surviving cancer at over 80%, which is fantastic news. However, with the increase aggressiveness of treatment protocols comes increased pain and symptoms for our children. For example, children undergoing chemotherapy will experience painful conditions such as mucositis, infection, and nueropathy in their arms and legs. Children who undergo radiation can experience pain through nerve damage, skin burns and irritation. When children undergo cancer treatment, they’re required to undergo repeated painful procedures, things like port access, brain marrow aspiration, and lumbar puncture. And even though we have anesthetic and protocols for children, most children tell us that they experience procedure-related pain during cancer treatment. We also know that most pain experienced during cancer is iatrogenic, and that means that the pain that children experience is not necessarily a result of the cancer itself, but the treatment they undergo. Changes into the way that we delivery healthcare in recent decades has led to more children getting treated on an outpatient basis, rather than being in a hospital, and this is great news for kids and their families because they get to spend more time at that home, and that makes kids and parents very happy. However, its also let to a transition from the responsibility of pain management from healthcare providers to parents in the home setting, and this can lead to emotional distress for parents as managing pain can be very challenging. As I mentioned, we don’t know a whole lot about pain and pain management in children with cancer, but some initial studies have focused on children with ALL, which is the most common childhood cancer. What this work has shown us is that kids with ALL experience pain at diagnosis and then throughout the first year of treatment. We also know that kids most commonly experience pain in their head, stomach, back and legs. They tell us that the pain they experience is moderate to severe, and when looking at kids with ALL, we found that kids were receiving medication at home with very low frequency. We have pain management guidelines, and particularly for children with cancer. And the World Health Organization suggests that the vast majority of patients with cancer can be made comfortable. If that’s the case, it begs the question – why are so many children with cancer experiencing significant pain? And tells us that we need to focus our efforts on reducing pain during cancer treatments. With my work at the UC Irvine center on stress and health, which is located at CHOC children’s hospital, I get to interact with our children and adolescents who have cancer. And Carla was a patient who shed some light on some of the barriers for pain management for children with cancer. Carla was receiving treatment at CHOC children’s for a brain tumor, and her parents were noticing that we was experiencing quite a bit of pain. However, they were concerned because she wasn’t reporting her pain during her clinic visits. And at one of her recent clinic visits, they knew that her pain was quite bad, yet they were concerned that she didn’t tell the nurse practitioner. So her parents suggested that perhaps Carla could talk to the nurse practitioner alone. In fact, the nurse practitioner had noticed some behavioral changes in Carla over the past few visits. And on this particular visit, noticed that Carla was grimacing and moaning. So in their individual interview, Carla did disclose that she was experiencing pain that had got quite bad, but she was afraid to talk about the pain because she thought it meant her cancer was getting worse. The nurse practitioner was able to reassure Carla that in fact her test showed her cancer was getting better and that the pain was likely a result of her treatment, and it could be managed. And so now that they had this information about her pain, they were able to start some pain management interventions that helped Carla feel much better during her treatment. So this example with Carla gives information about why some kids may be hesitant to report their pain during cancer treatment and these can be barriers to adequate management. Kids might be afraid to talk about their pain because they’ll think they have to go back to the hospital, and they’d rather be at home with their family. Like Carla, they may fear that if they have pain, it suggests that their cancer is getting worse. Kids may also believe that if they talk about their pain among their family members, they can cause some distress or anxiety. Kids can be very protective of their parents so they may not want to talk about pain at home. Lastly, kids may not want to report pain because they’re worried they may have to stop activities that they enjoy. And that’s an important part of being in cancer treatment is being able to do things that you enjoy. Parents and caregivers also report many challenges to managing children’s pain at home, parents may fear that if they give their children pain medication, they’ll cause addiction particularly if they have to give pain medication over longer periods of time. Parents may also have some misconceptions about how pain medication works, and for example think that I should save it until the pain is really bad or use it as a last resort. Parents of children with cancer experience significant amount of distress and that can make decisions about when and how to give pain medication at home challenging. Parents themselves may not want to acknowledge when their child is in pain because they may fear it means their child’s cancer is getting worse. And lastly, we as healthcare providers may not be doing enough to fully equip parent with the knowledge, the skills and the tools they need to adequately manage their child’s cancer pain at home. So these barriers are precisely why I started the program of research that I’ve been involved in through the UCI center on stress and health. Overall, our program of research is focused on assisting patients and families with managing pain and distress surrounding the medical environment and illness, and we are dedicated to developing interventions that change practice and reach patients and families directly. So with that, we have focused on pain in children undergoing cancer treatment, and to date we have recruited over 400 children and their families receiving treatment at CHOC and we’ve enrolled them in studies focused specifically on pain and pain management during cancer treatment. What we found through this work is that when we ask kids, most children will say they are in pain when they get their cancer treatment. Of the kids who say they have pain, most will say its moderate to severe. Many children have pain that’s recurrent or repeated, and some children will tell us that they experience pain as much as 3 times a week. We also know that kids are not receiving the treatment that they need always for their pain management. Consistent with the earlier studies, kids most commonly experience pain in their head, stomach, back, legs, and feet. We surveyed parents as well to ask about some beliefs and attitudes toward pain medication and we found that most parents endorse beliefs that we know are associated with giving less medication to children. So for example, parents worry about side effects of medication. They worry about causing addiction in their children, they may not always understand how pain medication works and when to give it. And lastly, parents may not always understand the different ways that children experience pain. For example, many parents will tell us that if my child is in pain, they’ll let me know. That’s not always the case. Sometimes kids in pain become isolated and withdrawn, or show other behavior changes, such as not wanting to eat, becoming clingy, that may not be obviously associated with pain. We wanted to understand a little more specifically how cancer pain was being managed in children at home. So we recruited about 50 kids who we followed over time, and we asked kids and parents in this study to report daily on pain in children and medication administration at home. And what we found is that most kids in this study reported pain, yet very few got medication. In fact, only 38% of children in the study got medication over the 2 week period that we assessed pain and medication. In fact, the average number of doses that kids received in that two weeks was two. On every single study day, there was a child in pain who got no medication, and on some days up to 20% of kids reported pain, but got no medication. We wanted to better understand what were some of the factors that might influence whether kids took medication at home. When we looked at factors related to children, we found that kids who took medication tended to report more pain, they also tended to be kids who were more anxious, and kids who have a poorer quality of life. When we looked at factors related to parents, we found that parents who gave pain medication tended to report fewer misconceptions about analgesics for kids, also had kids who had lower quality of life and tended to report more years of education. This early work that we did very clearly highlighted that we need to focus our efforts on improving children’s cancer pain management at home. And through this research, I want to empower children to better able manage their pain at home, and assist parents in pain management decisions. And so, we also know that there has been a recent push to involving information technology into healthcare, and this can improve treatment and engage patients in their own medical management. And to that end, I’ve partnered with the California Institute of Telecommunications and Information Technology, or Cal ITT, which is a lot easier to say. And they are a fabulous group of computer scientists and engineers among others, who have a specific focus through their division on developing technology for healthcare. And with Cal ITT, I have two main projects that are both funded by the American Cancer Society, I call them Pain Buddy and C-TIPS. I’ll talk more about Pain Buddy first. Pain Buddy is an innovative computer application for children to report on their pain and symptoms during cancer treatment. Pain Buddy works on a computer tablet, and children are able to report daily on the pain and symptoms they experience while they’re undergoing outpatient treatment. One of the main barriers to pain management is that we don’t have the data that we need to manage pain. For example, we don’t know when and under what circumstances kids are experiencing pain related to cancer treatment. We also know our memories about pain are pretty terrible, so our usual technique of asking patients in the clinic, tell me how much pain you’ve been in during the last couple weeks, just isn’t giving us accurate data. So with Pain Buddy, healthcare providers will have daily information about pain and symptoms sent to them automatically through an electronic server. A very unique component about Pain Buddy is that it’s configured with alerts, so that if a child reports pain and symptoms that warrant treatment, the healthcare provider will be notified automatically so that they can respond in real time and give such pain management recommendations and instructions. The Pain Buddy program is navigated by a 3D avatar that moves, walks, and talks and engages the child in the reporting process. And your child can customize Pain Buddy in a number of ways. They can select the avatar they like best, they can choose a number of backgrounds, colors, and designs for their program, and they can also earn points by completing diaries that they can use to add some cool things to their avatar, like hats, and glasses, and clothing. Another very innovative component about Pain Buddy is that it teaches children cognitive and behavioral skills to manage pain. Pain medications work great, but they’re only one aspect of pain management. And we know that they don’t always work for everybody and they don’t always take pain away entirely. So a great way to manage pain, is to use cognitive and behavioral skills, and these are things like deep breathing, mindfulness, guided imagery, progressive muscle relaxation or distraction. Typically, a child would have to come into the clinic and work with a specialized provider to learn these strategies. With Pain Buddy, they can learn them in the comfort of their own home using their avatar. So this is a great way to empower kids to manage their pain at home, to provide data to health care providers in real time so they can understand the patterns of pain during cancer treatment, and overall improve the quality of life in children. The second main project that I’m involved in is Cancer-Tailored Information for Pain and Symptoms, C-TIPS. C-TIPS is an application also delivered on a computer tablet, but its directed at parents of children undergoing cancer treatment. C-TIPS provides information, skills training, as well as a stress management tutorial for parents. We have given information for pain management in four areas with C-TIPS. One is procedural pain, so pain that kids might experience with things like port access or lumbar punctures. There’s also a section on treatment-related pain, so pain related to chemotherapy or radiation, for example. We also talk about palliative care, which would be treatment focused on improving pain and quality of in children with cancer. And lastly, we talk about barriers to pain reporting in children. The information that C-TIPS provides is tailored to your child’s age, their diagnosis, and their treatment protocol. So the information that you get is relevant to you and your child’s experience. The format of C-TIPS is a question/answer format, so we provided questions that parents may have about pain during cancer treatment, and then give information to answer that. In addition, C-TIPS provides some skills training for parents. So in the example of procedural pain, we talk about distraction being a great tool to help kids get through procedures with less pain and distress, what it is, how to use it, and how you can best help your child to get through procedures. a very unique component of C-TIPS is the stress management tutorial. We have just a vast amount of evidence now that parents of children with cancer experience significant stress, and yet we’re dong very little to target parent’s stress in this population, and so we wanted to address that gap with C-TIPS by including a tutorial for parents to help with stress. And this is delivered by a relaxation training, which is diaphragmatic breathing, and then guided practice that is paired with imagery and music to create a relaxing atmosphere, and here’s an example of some of the 12 different themes that you can select with C-TIPS for your imagery. We’ve fully developed C-TIPS and we’ve tested it in a sample of 30 parents of children undergoing cancer treatment at CHOC and we’ve received great feedback from the parents about the program, as well as some suggestions for improvement, we have made those suggestions and our next steps would be to enroll a larger sample of parents to look at outcomes of pain during cancer treatments and parent stress. With both of these projects, our next steps are patient recruitment. For Pain Buddy, we have been working on development for over a year, and we are scheduled to start enrolling children ages 8 to 18 in January, and our goal is to have children use Pain Buddy over a period of time and look at the impacts of pain and quality of life during cancer treatment. And C-TIPS as I mentioned, we are hoping to start enrollment with parents with a larger sample so we can look at some outcomes as well. Our goal with both of these projects is to improve children’s quality of life during cancer treatment so that children are no longer experiencing unnecessary pain and suffering during cancer treatment. And ultimately, we’d like to see both of these programs as standard for children’s cancer treatment in hospitals across the country. I’d like to thank you so much for your time today, and I would be remised if I didn’t thank my team at the UC Irvine Center of Stress and Health, without whom this program of research would not be possible. Thank you so much

Leave a Reply

Your email address will not be published. Required fields are marked *