Improving the Pediatric Patient Experience During Radiation Therapy – A Children’s Oncology Group Study

Abstract

Purpose/Objectives

Treatment with radiation therapy (RT) can cause anxiety and distress for pediatric patients and their families. Radiation oncology teams have developed strategies to reduce the negative psychological impact. This survey study aimed to characterize these methods.

Materials/Methods

A 37-item questionnaire was sent to all radiation oncology members of the Children’s Oncology Group to explore strategies to improve the pediatric patient experience. The Wilcoxon rank-sum test was used to assess factors associated with use of anesthesia for older children.

Results

Surveys were completed by 106 individuals from 84/210 institutions (40%). Respondents included 89 radiation oncologists and 17 supportive staff. Sixty-one percent of centers treated ≤50 children per year. Respondents described heterogenous interventions. The median age at which most children no longer required anesthesia was 6-years-old (range: ≤3-years-old to ≥ 8-years-old). Routine anesthesia use at an older age was associated with physicians’ lack of awareness of these strategies (p=.04) and <10 years of pediatric radiation oncology experience (p=.04). Fifty-two percent of respondents reported anesthesia use added >45 minutes in the radiation oncology department daily. Twenty-six percent of respondents planned to implement new strategies, with 65% focusing on video-based distraction therapy and/or augmented reality/virtual reality.

Conclusions

Many strategies are used to improve children’s experience during RT. Lack of awareness of these interventions is a barrier to their implementation and is associated with increased anesthesia use. This study aims to disseminate these methods with the goal of raising awareness, facilitating implementation, and, ultimately, improving the experience of pediatric cancer patients and their caregivers.

INTRODUCTION

Each year, approximately 16,000 children ≤19 years of age are diagnosed with cancer in the United States¹, and a substantial number of these pediatric patients require radiation therapy (RT). Cancer care is complex, involving many treatment modalities that may be given over the course of years. The various cancer treatments can cause anxiety for children and their caregivers.^2,3 In fact, concerns regarding therapy are among the most common stressors for pediatric cancer patients and their families.⁴ Furthermore, long-term survivors of childhood cancer may have persistent psychological effects related to their treatment.⁵ Therefore, many approaches are used to ease pediatric cancer patients’ distress and improve their overall experience during therapy.

Alleviating patient anxiety is important for many reasons. One factor that is specific to RT is that decreasing anxiety may reduce the requirement for daily anesthesia. During RT, patients must remain still for precise and accurate treatment delivery. Furthermore, at the time of treatment, pediatric patients must be separated from their caregivers, which can cause substantial distress for both the child and parent.^6,7 Young children are often unable to comply and may require daily sedation to remain still while alone in the treatment room. There are small but important risks associated with anesthetics.^8–10 Furthermore, daily sedation for up to 6.5 weeks of RT increases the time spent in the radiation oncology department, necessitates that the patient fast prior to treatment, and results in rigid scheduling with early morning treatment times, all of which may negatively impact patient and family quality-of-life.^6,7

Numerous methods are used to improve the experience for pediatric patients during RT. For example, child life specialists (CLS) are trained to help children and their families cope with illness and treatment. They can implement customized strategies that incorporate age-appropriate play, education, preparation, and coping techniques to help provide children with a sense of mastery over their environment and to reduce their need for sedation.¹¹ Additionally, given the multidisciplinary nature of treatment, nurses, radiation therapists, and other members of the clinical team can positively impact children’s experience, as well.^12,13 Another area of interest is pre-exposure therapy for acclimation, which typically includes departmental tours and audiovisual aids. More recently, efforts have been underway to use augmented reality/virtual reality (AR/VR) to provide children and their families with realistic virtual experiences that provide clear expectations of their upcoming treatment. During the treatments themselves, video-based distraction therapy (VBDT) is used, and data suggest that young children who watch movies during RT are less likely to require daily sedation.¹⁴

There may be insufficient widespread dissemination of the strategies employed by radiation oncology teams to relieve patients’ and families’ anxiety related to RT. We hypothesized that a lack of awareness of the available interventions and tools for improving the pediatric experience results in their under-utilization, as well as duplication of efforts across groups. To address these issues, we surveyed the members of the Children’s Oncology Group (COG) radiation oncology discipline to collect and disseminate comprehensive data regarding the various techniques that are used to improve the experience of pediatric patients and their families during RT.

METHODS AND MATERIALS

Questionnaire development

We designed a 37-item survey questionnaire to collect cross-sectional data from pediatric radiation oncologists and their clinical teams. The survey domains included: physician and institutional characteristics, anesthesia use, strategies used to improve the pediatric patient experience, obstacles to their implementation, and future directions. As we developed the survey, we obtained comprehensive descriptions of the methods used by 16 pediatric radiation oncology groups to ensure that they would be captured by the questionnaire. Then, the survey underwent review by five experts in pediatric radiation oncology and was iteratively revised by consensus. The final approved questionnaire is available in Supplemental Appendix A.

Survey Administration

After approval from the University of Colorado institutional review board and the Children’s Oncology Group (COG), the survey was distributed by email to members of the COG radiation oncology discipline. Recipients were invited to forward the survey to other members of their clinical teams. The survey was available for a 4-week period in January-February 2020. Responses were gathered through SurveyMonkey (http://www.surveymonkey.com).

Analysis

Descriptive statistics were used. Most analyses were conducted per respondent; however, respondents were binned by institution (n=84) to report the following variables: institutional location, institutional setting, pediatric cases treated per year, number of pediatric radiation oncologists per institution, location of the radiation center in relation to the pediatric hospital, availability of proton therapy, and playroom information. Missing data due to non-responses were limited and were excluded from the analyses. The Wilcoxon rank-sum test was used to evaluate factors associated with routine anesthesia use for children of older age, considering age as a continuous variable. Statistical significance was taken at a level of < 0.05. Analyses were performed with Stata version 14.2 (StataCorp LP, 2015).

RESULTS

Response Rates

Survey responses were received from 106 individuals, including 89 pediatric radiation oncologists. The remaining 17 surveys were completed by CLS (n=6), radiation therapists (n=5), nurses (n=3), clinical social workers (n=2), and a medical physicist (n=1). In aggregate, representatives from 84 of the 210 surveyed institutions completed this survey (40%).

Institution and Physician Characteristics

The majority of responses came from institutions in the United States (73%), followed by Canada (11%), Australia (4%), Saudi Arabia (1%), and unknown locations (11%) (Figure 1). Responses were from academic (79%) and private (21%) practices (Figure 2a). The number of pediatric patients treated at each institution per year is shown in Figure 2b. The median range was 26–50 pediatric cases per year (45^th-61^st percentile). At 61% of institutions, ≤50 pediatric patients were treated annually. Among survey respondents, there was a median of two pediatric radiation oncologists at each center (interquartile range [IQR] 1–2). Regarding the location of the radiation treatment facility relative to the pediatric cancer hospital, 37% were within the same center, 23% were in a different hospital but on the same campus, 27% were on a different campus but in the same city, 1% were in a different city, and 12% had a combination of these settings. Thirty-one percent of centers offered proton therapy; at these institutions, a median of 70% of pediatric cases were treated with proton therapy (IQR 50–85%).

Figure 1 –

Geographic distribution of survey respondents

Figure 2 -.

Institutional Characteristics

2a – Institutional setting of pediatric radiation oncology centers

2b – Number of children treated per year at each institution

For responding physicians, the median duration of their experience in pediatric radiation oncology was 12 years (IQR 5–22). Pediatric patients represented a median of 15% of their total patient caseload (IQR 5–45%). A training fellowship in pediatric radiation oncology was completed by 19%.

Anesthesia Characteristics

Data regarding anesthesia use are shown in Figure 3. According to responding physicians, the median age at which the majority of children no longer required anesthesia for radiation treatment was 6 years (IQR 5–7 years). Some centers reported routinely treating children without anesthesia at ages from as young as 3–4 years old (17%) to as old as ≥7 years old (33%). Twenty-six percent of physicians (49^th-74^th percentile) estimated that anesthesia use resulted in an additional 46–60 minutes spent by the patient in the radiation oncology department daily, and another 26% estimated that it added >60 minutes daily.

Figure 3 –

Anesthesia Characteristics

3a – Age at which most patients no longer require anesthesia

3b – Additional time spent in the radiation oncology department daily with anesthesia use

Methods Used to Improve the Patient Experience

- Preparation for CT Simulation and Radiation Treatment

As shown in Figure 4a, commonly used strategies to prepare children and their families for RT included a thorough description of the process (97%), with an attempt to meet early during the overall treatment course (82%). Children received support from a CLS (67%), clinical social worker (45%), pediatric nurse, and/or radiation therapist. Preparative strategies included a tour of the CT simulation suite and radiation vault (73%), a practice CT simulation (47%), videos or photographs (43%), model CT simulators/linear accelerators (24%), and, rarely, a virtual simulation and/or radiation treatment through AR/VR (7%). Educational materials were used, including information packets (56%), radiation-specific activity or coloring books (24%), iPad/iPhone apps (ex. Rads4Kids, ProtonU; 11%), YouTube videos (ex. One of a kind! A guide to radiotherapy), and a video of previously treated children describing the radiation process. Some centers advised the child to practice lying still for treatment at home (24%). Respondents suggested reassuring patients that nothing except the immobilization devices will touch them; there will be no pain; they just need to remain still and know the radiation center is a safe place.

Figure 4 –

Methods used by radiation centers to improve the pediatric patient experience, 4a – Prior to CT simulation, 4b – Mask Acclimation, 4c – During CT simulation, 4d – During radiation treatment, 4e – Other departmental activities (AR/VR – augmented reality/virtual reality, VBDT – video-based distraction therapy)

- Mask Acclimation

Methods for improving children’s tolerance of facemasks (Figure 4b) included mask modification for comfort (ex. cutting holes for eyes/mouth; 81%) and mask decoration with the child’s favorite character (71%). Prior to their simulation, children could make a mask on their hand, a stuffed animal, an action figure, etc. (39%) or participate in making a mask for a family member or a member of the clinical team (26%). Several centers noted additional strategies, such as showing children masks used for previously treated patients, allowing parents to take a mask on and off of their child, providing children with incentives to complete the mask-making process, and using a wet cloth to cool the mask quickly. Some groups encouraged practice treatment sessions, during which children wear the mask and practice lying still, either in the radiation oncology department or with a second mask at home. Another strategy listed was avoiding mask use altogether by using a vacuum-assisted mouthpiece/bite block¹⁵.

- During CT Simulation and Radiation Treatment

Centers employed multiple strategies to reduce anxiety during the CT simulation and radiation treatments themselves (Figure 4c/d). Methods specific to the simulation included a policy of no tattoos (46%) and allowing a caregiver to wear a lead apron and remain in the room during the CT scan (16%). Some groups used EMLA cream for tattoos. During the course of treatment, some respondents ensured that children had a consistent team of radiation therapists (58%). For both the simulation and radiation treatments (percentages listed respectively), commonly used methods included comfort objects (ex. stuffed animal, blanket, stress ball; 78%/83%), music or audiobooks (64%/78%), CLS presence (52%/49%), and anticipatory guidance (55%/54%). Additional methods included two-way audio between the child and caregiver (49%/56%), a therapy team with a special interest in pediatrics (46%/58%), child friendly décor (27%/37%), VBDT (24%/17%), the ability for parents to watch their child on video (16%/15%), and aromatherapy (6%/12%).

- Video-based distraction therapy

With VBDT, children watch movies or television shows during RT. For treatment of sites outside of the head, patients have watched movies using video goggles, VR Oculus Go, an iPad, a portable DVD player, or a television monitor mounted to a stand or pole. For treatment of any site, including the head, movies may be projected onto a radiation-compatible screen positioned above the patient’s face. Two projector-based approaches include Avatar,14 developed at Stanford University, and RadFlix, developed at the University of Colorado; with these systems, the projector is mounted at the head or the foot of the treatment table, respectively. During the CT simulation, RadFlix uses a floor stand projector to display video content on the ceiling with dimmed room lights.

- Additional Strategies

Additional strategies are summarized in Figure 4e. Sixty-seven percent of programs had a children’s playroom/waiting area, and 29% had “child-friendly” consultation rooms. A child’s final treatment was commemorated with a celebration (64%), gift (63%), trophy, or certificate. Some groups provided a small toy or gift each day or week during RT, and some allowed the child to select it from a treasure chest (49%). After each treatment at some centers, patients were given a glow-in-the-dark bravery bead (21%), a sticker to place on an individualized “countdown calendar” (38%), or a treat. One physician gave children $1 after each treatment and has received the nickname “Dr. Dollar.” Additional methods included therapy animal visits (30%), other planned events (holiday party, art therapy, planned guests, “Fun Fridays;” 27%), a mini-car or airplane for the child to ride through the department daily for treatment (16%), and the use of bubbles and glitter wands. At one institution, each child decorated a tile that was placed in the ceiling in the treatment room during their radiation course. Another group gave children a stuffed version of their favorite animal at the time of their simulation.

- Children’s Playroom/Waiting Area

Children’s playrooms/waiting areas contained toys (98%), coloring books/arts and crafts (84%), televisions or projectors (66%), video games (52%), iPads/computers (32%), medical play items (25%), fish tanks, reading nooks with books, Lego walls, and mini pool tables. These items were cleaned with disinfectant wipes (70%), a UV sterilization box (5%), and unknown methods (25%).

- Child Life Specialists

CLS support was available at 56 institutions (67%). Only 22% of respondents reported that there were “no obstacles” to providing CLS support for their pediatric population. For the remaining groups, barriers included a lack of CLS availability (31%), insufficient financial support for a CLS (29%), placement of the CLS at a different hospital (8%), inadequate communication with the CLS (8%), insufficient training of the CLS in RT (4%), language barriers (2%), and lack of continuity of available CLS personnel (2%). When possible, respondents recommended having regular meetings between the treatment and CLS teams and having the CLS start the child’s preparation for RT early during the treatment course.

Obstacles to Implementing Strategies to Improve the Pediatric Experience

As shown in Figure 5, barriers to implementing the strategies described above included insufficient lead time (43%), insufficient financial support (35%), inadequate staff (35%), lack of awareness of available tools or strategies (26%), language barriers (14%), and lack of support from leadership (12%). Respondents described particular challenges associated with working at adult hospitals that may not prioritize the pediatric patient experience, and a lack of resources that are provided if the pediatric patient volume is relatively low.

Figure 5 –

Obstacles to implementing methods to improve the pediatric patient experience

Sources of Funding

Funds to support the strategies described above came from the radiation oncology departments (67%), philanthropy (53%), hospitals (48%), grants (8%), and unknown sources (8%). Nine percent of respondents had no funding. In several cases, funds were provided by radiation oncology physicians and staff directly.

Factors Associated with Anesthesia Use at Older Ages

As shown in Table 1, with age considered as a continuous variable, routine anesthesia use for older children was associated with physicians’ lack of awareness of available strategies to reduce patient anxiety (p=0.04) and <10 years of pediatric radiation oncology experience (P=0.04). Other factors, such as having access to a CLS, treating <100 cases per year, completing a pediatric fellowship, practicing in an academic vs. private setting, and working at a radiation treatment center remote from a children’s hospital, were not associated with the age of routine anesthesia use.

Table 1-.

Factors associated with routine anesthesia use at older ages

Variable	Mean Age of Treatment Without Anesthesia (years)		P-Value
	Yes	No
Lack of Awareness of Available Tools/Strategies	6.2	5.5	0.04
Fewer than 10 Years of Pediatric Experience	6.0	5.5	0.04
Child Life Specialist Support	5.8	5.7	0.93
Fewer than 100 Pediatric Patients Treated per Year at Institution	5.6	6.2	0.08
Fellowship in Pediatric Radiation Oncology	5.6	5.8	0.63
Academic (yes) vs Private (no) Setting	5.7	6.0	0.63
Radiation Given at a Separate Campus from the Pediatric Hospital	5.8	5.7	0.53

Future Directions

Twenty-seven percent of respondents reported that they planned to introduce new methods to improve the pediatric patient experience within the next 2 years. The most common strategies were implementing AR/VR and/or VBDT (67%). Other areas of focus included enhancing staffing and obtaining CLS support. One group planned to create a pediatric RT team, with representation from the department leadership, radiation oncology, physics, therapy, and nursing; this team would focus on education, research, reduction of anesthesia use, and improvements in pediatric patient care. In order to reduce treatment time, one respondent reported plans to implement VMAT for both total body irradiation and craniospinal irradiation. Other groups planned to develop an animated educational video, obtain Lego LINACs, create or renovate child play spaces, project images on the walls of the treatment vault, and seek out donations for children and their families.

Resources for Educational Materials

A comprehensive list of strategies to improve the pediatric experience during RT with additional details, as collected in this study, is available at www.radpeds.org.

DISCUSSION

In this study, we have reported the strategies used at 84 institutions around the world to improve the experience for pediatric patients and their families during RT. We observed considerable variability across institutions in the use of these methods. One factor that may contribute to this heterogeneity is insufficient dissemination of these techniques. In support of this hypothesis, 26% of respondents in this study cited “lack of awareness of available tools and strategies” as an obstacle to their implementation. This finding underscores the importance of collecting and sharing these methods. Although efforts have been made previously to facilitate communication and education on this topic through various groups, we are not aware of any systematic and comprehensive work that has been done previously to capture and report these methods. Here, we have compiled the strategies to raise awareness and facilitate their implementation, with the overarching goal of enhancing the treatment experience for this vulnerable population.

To place in context the importance of these strategies, pediatric patients and their families can experience substantial anxiety, distress and fear when coming to terms with a devastating and possibly life-threatening diagnosis, along with the potential toxicities of RT.^6,7 Their anxiety can be alleviated by using appropriate methods to educate and prepare patients and families for radiation treatment.^16,17 Children value developmentally appropriate information and preparation.^18,19 Additionally, appropriate psychologic support throughout treatment may help mitigate the negative emotional impact.^20,21 Importantly, parents’ and children’s feelings are intermeshed, so reducing a child’s anxiety and distress can provide relief for the parents, and vice versa.⁶

One significant finding of our study was that anesthesia use was quite variable across centers. Some groups treat children as young as 3 to 4-years-old without sedation routinely, whereas others use anesthesia in 6 to 7-year-olds regularly. Lack of awareness of strategies to improve the pediatric experience was significantly associated with routine anesthesia use at older ages (p<0.04). Another factor, not included in our analysis, that may greatly impact anesthesia use is the complexity and duration of the radiation treatments. As one example, the treatment time for proton craniospinal irradiation is significantly longer than for a simple 3D photon plan. Therefore, the same child may require sedation for the first type of treatment but may tolerate therapy awake for the second. In some cases, sedation is critical and absolutely should be used. Nonetheless, it should not be taken lightly.

Reducing the use of anesthesia is desirable for many reasons. First, animal data suggest that anesthesia exposure early in life may predispose to long-term neurocognitive impairments.^22,23 Translation of these findings to human children is complex, and findings have been inconsistent.¹⁰ However, one recent study reported that higher cumulative anesthesia exposure and duration may be associated with neurocognitive impairments in long-term survivors of childhood leukemia.²⁴ Due to these concerns, the U.S. Food and Drug Association issued a safety announcement that repeated or lengthy use of anesthesia in young children may affect brain development.²⁵ Additional small but real risks of undergoing anesthesia include respiratory complications, cardiovascular complications, vomiting and sleep disturbances.^26–29 Also, treatment with anesthesia may result in inflexible treatment schedules that reduce quality-of-life for both the child and family. For example, a more flexible treatment schedule might allow the child to attend school, which provides social support and a sense of normalcy.⁷ Flexibility in the RT schedule might also improve parents’ quality-of-life, as they manage work schedules and logistics for the rest of their family.⁶ Furthermore, daily sedation increases the amount of time that the patient and family spend in the radiation oncology department. Fifty-two percent of respondents reported that anesthesia use adds >45 minutes daily in the radiation oncology department, which results in >22.5 additional hours spent in the department over a 6-week course of RT. Lastly, a reduction in anesthesia use could result in significant cost savings of approximately $50,000 per child.³⁰

Adequate preparation and education are desirable for the child and family before initiating RT. Children want to be well-informed about their treatment, and they benefit from developmentally appropriate education.⁷ Parents may need information to be repeated several times, due to the challenge of absorbing a large volume of detailed material while in a high-stress state.⁶ Adequate preparation of the child and family requires sufficient lead time prior to the initiation of RT. In our study, 43% of radiation oncologists reported insufficient lead time, despite 82% of them attempting to see the patient early in their cancer treatment. In some cases, RT may need to be started quickly due to clinical symptoms or due to the timing dictated by the child’s overall treatment plan. In other cases, however, it may be possible to meet patients earlier in their treatment course through enhanced communication and coordination between radiation and pediatric oncology teams. As one example, if a member of the radiation oncology team is present regularly at tumor boards and/or multi-disciplinary clinics, then early consultations may be facilitated. Efforts to improve procedures should be prioritized, so, when possible, patients are seen earlier and have adequate time to familiarize themselves with the radiation department and treatment process. Children report being scared of the machines and state that pictures and oral descriptions do not prepare them as well as physically visiting these spaces.⁷ Although the majority of centers provide tours of the CT simulation and treatment areas, this is a technique that all centers may be able to implement if they have adequate lead time. Mask construction and acclimation is challenging and distressing for children.⁷ Most centers decorate and modify the masks for comfort. However, few groups familiarize the child with the mask prior to simulation, which is another strategy that may be easy to adopt with sufficient lead time.

AR/VR is an innovative approach to introduce children to RT through a realistic, simulated experience. This intervention is garnering great interest, but its clinical use has been limited to date, as it is being used by only 7% of respondents in this study. In other fields, AR/VR has been shown to reduce anxiety prior to surgery³¹ and decrease anesthesia use for children undergoing MRI scans³². RT is an unfamiliar experience for most people, so AR/VR could be valuable to provide clear expectations of the upcoming events for both the patient and family. AR/VR provides simulated experiences via two different approaches. The first is a pre-recorded, 360-degree video that allows the user to look around with 3 degrees of freedom (DOF) and go through a pre-determined experience with a passive role. The second approach is a ‘gamified’ experience, in which the user interacts with a custom-designed virtual environment with 6 DOF in an active fashion. This approach may allow a more customized experience, with patient-driven exploration of the treatment spaces. One question that warrants further study is younger children’s ability to tolerate AR/VR. If done well, this tool holds great promise to prepare children for treatment in ways that have not been possible previously.

This study identified numerous strategies that may be used during the CT simulation and radiation treatments themselves to reduce anxiety. One aspect of the treatment process that may be particularly distressing for young children, as well as their parents, is that they must be physically separated.^6,7 Methods to maintain the child-parent connection may be beneficial. For example, allowing the caregiver to wear a lead apron and remain in the simulation suite during the CT scan may be soothing for some patients; however, only 16% of survey respondents offer this option. In addition to separation anxiety, children report that it is difficult to lie still for treatment for longer intervals of time, and they appreciate distraction therapies.⁷ Multiple centers use music or audiobooks for distraction (78%). Fewer groups offer VBDT (24%) that allows children to watch movies. The use of VBDT decreases anesthesia use in children undergoing RT.¹⁴ Numerous methods are available for VBDT during treatment of disease sites outside of the head (ex. iPad mounted on a stand). During treatment of any disease site, including sites within the head, projector-based systems may be used to display video content on a radiotransparent screen above the patient’s face. Two projector-based systems include Avatar,14 developed at Stanford University, and RadFlix, developed at the University of Colorado. These projector systems are generally easy to use with any LINAC, and they may improve the experience for children during RT.

As another approach, frequent incentives and activities may cause children to look forward to coming to the radiation clinic every day. Children enjoy tracking their progression through treatment, as well as receiving periodic rewards and incentives;⁷ however, only a minority of centers use strategies such as countdown sticker charts and daily bravery beads. Additional ideas include providing a treat or small toy after each treatment. Other fun incentives include daily rides in a mini-car/airplane to the treatment vault. Many of these methods are inexpensive and easy to implement to enhance the experience for pediatric patients.

CLS support is valuable and may be under-utilized in radiation oncology. CLS are specially trained to provide age-appropriate education and coping strategies. These interventions can reduce fear, anxiety and emotional distress in children confronting novel treatment environments. According to survey respondents, only half of radiation oncology centers provide children with CLS support. Access to CLS is limited for a variety of reasons, including lack of funding and physical separation between radiation oncology departments and children’s hospitals. Other researchers have shown that employing a CLS reduces the requirement for daily anesthesia during RT.³⁰ Conversely, in our analysis, CLS support was not associated with a reduction in anesthesia use in older children. This discrepancy may be due to various factors. For example, respondents who stated that CLS services are available at their institution may not have sufficient support for each patient going through RT. In addition, numerous factors outside of CLS support influence the requirement for sedation during RT (for example the complexity of the radiation treatment, as stated previously). Therefore, we may not have detected an association of CLS support with reduced requirement for sedation, due to confounders that were not captured in this study. Adequate CLS support in radiation oncology may not only enhance the patient experience, but also be cost saving³⁰. Increasing CLS presence in radiation oncology is another opportunity for improvement.

In summary, children and parents appreciate the use of appropriate strategies to reduce anxiety and distress during RT.^6,7 Our survey study demonstrated the breadth of techniques that are available, including many that require minimal resources. Numerous obstacles may impede implementation of these strategies, including insufficient time, lack of institutional support or resources, and language barriers. Despite these challenges, efforts should be made to recognize the difficult circumstances of these vulnerable populations and to prioritize minimizing the negative psychological effects of treatment.

To the best of our knowledge, this is the first survey study of a pediatric cooperative group to collect strategies used to improve children’s experience during RT. The major strength of this study is the participation of a large number of diverse groups from around the world. Every effort was made to obtain responses from a wide variety of pediatric radiation oncology groups. However, responses were obtained from only 40% of institutions. Therefore, a weakness of this study is that the surveyed sample may not be representative of all COG institutions. Other weaknesses of this study include the predominance of responses from physicians, with limited input from supportive staff who play a critical role in this aspect of patient care. Also, the survey did not provide granular data, such as which interventions are most effective for each age group.

CONCLUSIONS

Many strategies are available to improve children’s experience during RT. Their use varies across centers. Lack of awareness of these interventions is a common barrier to their implementation and is associated with routine use of anesthesia in older children. In this study, we have collected these various interventions with the goal of raising awareness, facilitating implementation, and, ultimately, improving the experience of pediatric cancer patients and their caregivers.