Abstract
Background:
Rehabilitation (i.e., physical, occupational, speech therapy) aims to optimize function and quality of life (QOL) but is not consistently integrated into oncology care. This study aimed to develop a rehabilitation information sheet informed by the rehabilitation experiences of children diagnosed with cancer before age 19 and their parents/caregivers.
Procedure:
This mixed methods, primarily qualitative study was conducted at two US children’s hospitals. Eligible participants included childhood cancer survivors (CCS) aged 12–25 years who were referred to one or more rehabilitation therapies following diagnosis. Parents/Caregivers were eligible if their child was diagnosed with cancer before age 19 and referred to rehabilitation. Participants completed a semi-structured interview in English. Qualitative findings guided the development of a rehabilitation information sheet. CCS and caregiver participants and oncology and rehabilitation clinicians at the study sites provided feedback on the information sheet through an electronic survey.
Results:
Thirteen CCS, 33 parents/caregivers, and 36 clinicians participated. Participants described how engaging in rehabilitation promoted normalcy following a new pediatric cancer diagnosis and supported self-confidence and mental health. Participants wanted information about rehabilitation soon after the child’s diagnosis and emphasized that they prioritized rehabilitation during cancer care. Common barriers to rehabilitation included treatment side effects, insurance, and outpatient scheduling, whereas clear communication and working with consistent providers supported engagement. Almost all individuals (99%) reported the information sheet was easy to understand and the amount of information was just right (86%).
Conclusions:
Rehabilitation is highly valued by CCS and parents/caregivers, necessitating its integration into pediatric cancer care.
Keywords: cancer, mixed methods, patient education, pediatrics, quality of life, rehabilitation
1 |. Introduction
Pediatric cancer survival rates have increased to 85% over the past several decades [1], creating a paradigm shift in pediatric cancer care. Comprehensive cancer care must address not only the cancer itself but also the acute and long-term effects of cancer and its treatment with the goal of improving well-being and function [2, 3]. Rehabilitation teams (e.g., physical and occupational therapy [OT], speech language pathology) are key components of comprehensive cancer care that aim to optimize function, reduce disability, and improve quality of life (QOL) among childhood cancer survivors (CCS), defined as individuals diagnosed with cancer before age 19 [4–7].
Rehabilitation improves function in domains that are negatively impacted among CCS, such as mobility, fatigue, cognition, communication, QOL, and independence in activities of daily living [8–11]. Rehabilitation services should be available from diagnosis through long-term survivorship as well as palliative and end-of-life care [12]. Unfortunately, cancer rehabilitation programs are still scarce. As of 2021, <25% of specialized pediatric hospitals, most of which were in the United States, had specialized multidisciplinary rehabilitation programing for CCS [13]. However, institutions in the United States and globally are continuing to expand pediatric oncology rehabilitation programing [14, 15], offering opportunities to support rehabilitation program development and implementation, bolstering the body of evidence in this evolving field.
The lack of clear pathways for oncology rehabilitation care creates inequitable access. Challenging referral processes, lack of education on rehabilitation, and the prolonged nature of cancer treatment can make it difficult to initiate services and receive long-term care [13, 16, 17]. Current research on rehabilitation access is limited to the perspectives of healthcare providers and administrators and does not include the perspectives of CCS and their caregivers. Their perspectives are vital to developing rehabilitation programs that support access for all. This work is part of a broader study that aimed to investigate the rehabilitation experiences and perspectives of children diagnosed with cancer before age 19, along with the experiences of parents/caregivers. The aim of the current study was to develop a patient-facing pediatric cancer rehabilitation information sheet informed by the lived experiences of CCS, parents/caregivers, and clinicians. Our goal is for oncology and rehabilitation clinicians to use the information sheet to educate CCS and parents/caregivers about rehabilitation services.
2 |. Methods
This mixed methods exploratory sequential study (QUAL → quan) was conducted at two academic medical centers and their affiliated Children’s Hospitals—St. Louis Children’s Hospital and Children’s Hospital Colorado. CCS and parents/caregivers, henceforth referred to as caregivers, completed a semi-structured interview followed by an online survey. During the survey, they provided feedback on a rehabilitation information sheet developed from interview data. They received retail gift cards for participating. Clinicians completed an online survey to provide feedback on the information sheet. Institutional Review Boards at both institutions approved this study.
2.1 |. Study Sample
2.1.1 |. Eligibility Criteria
Eligible participants were diagnosed with any cancer type before 19 years, between 12 and 25 years at the time of study participation, at least 3 months post-diagnosis, referred to physical therapy (PT), OT, and/or speech–language pathology (SLP) following their cancer diagnosis, and able to communicate in English. Eligible caregivers (e.g., parent, grandparent) provided care for a child meeting the above eligibility criteria (excluding age criteria of 12–25) and able to communicate in English.
Eligible clinicians were oncology (e.g., physician) or rehabilitation clinicians (e.g., PT) at the participating study sites. Rehabilitation clinicians invited to participate worked with CCS and were identified through collaboration with our clinical partners.
2.1.2 |. Participant Recruitment and Sampling Approach
The research team pre-screened the clinical schedule to determine eligibility and received approval from the oncology team to contact potential participants. CCS and caregivers were recruited in person during oncology visits or over the phone and provided informed consent or assent, as appropriate based on age. A parent or legal guardian provided consent for assenting minors. We purposively sampled participants to maximize variation by cancer type and rehabilitation experiences and classified participants into disease categories: central nervous system (CNS) tumors, non-CNS solid tumors, and blood cancers. We aimed for seven to eight participants per disease category per site to support comparison of rehabilitation experiences by disease category [18].
We recruited clinicians via email through a personalized REDCap link. By completing the REDCap survey, they consented to participate.
2.2 |. Program Environment
Currently, there is no standard approach for rehabilitation service delivery for CCS [13]. Therefore, it is important to understand the rehabilitation program structure at each study site. Site 1, St. Louis Children’s Hospital, has an inpatient oncology therapy team that provides PT, OT, and SLP services for CCS. For outpatient services, CCSs are seen at any of the hospital’s outpatient therapy clinics. At Site 2, Children’s Hospital Colorado, PTs, OTs, and SLPs on the oncology rehabilitation team provide care in both inpatient and outpatient settings. Outpatient rehabilitation occurs within the Center for Cancer and Blood Disorders, and visits are coordinated with oncology visits.
2.3 |. Data Collection
2.3.1 |. Semi-Structured Interviews
We developed a semi-structured interview guide (Section S1) based on available evidence [6, 13, 16] and clinical experience to address: rehabilitation referral processes, rehabilitation knowledge and experience, barriers and facilitators to access, and information preferences. Participants completed interviews over the phone (n = 23), Zoom (n = 14) or in-person (n = 9). We conducted interviews from October 2023 to March 2024 at Site 1 and from April 2024 to July 2024 at Site 2.
2.3.2 |. Information Sheet Development
The research team summarized qualitative findings (see data analysis) to create a one-page information sheet on pediatric cancer rehabilitation. The goal was to include essential information that would educate children and their families about rehabilitation therapies. We used Sydney Health Literacy Lab (https://shell.techlab.works/) to improve readability. We created separate information sheets for caregivers and CCS, which we iteratively revised on the basis of participant feedback.
2.3.3 |. Information Sheet Survey
We used member checking, a method of returning interview data to research participants to confirm or refute findings, to support the validity and trustworthiness of the qualitative findings [19]. Three groups completed the information sheet survey in REDCap: CCS, caregivers, and pediatric oncology and rehabilitation clinicians. Participants reviewed the information sheet and rated their agreement with information sheet statements (agree, disagree, unsure) and provided feedback on the volume of information, understandability, and quotes. Participants provided open-ended responses when they responded disagree or unsure and had an opportunity to suggest alternate language or information. The full surveys are available in Section S2. Survey questions varied slightly by participant type. We followed up with non-responding CCS and caregivers up to four times and non-responding clinicians up to three times.
2.4 |. Data Analysis
2.4.1 |. Semi-Structured Interviews
Interviews were audio-recorded, transcribed, and de-identified. We used qualitative description and content analysis methodologies to analyze the qualitative data [20, 21]. The study lead (A.L.) drafted and revised the codebook through team-based discussions. Following codebook pilot testing, the coders (A.L., H.R.) independently coded all transcripts using NVivo Version 14. Using these codes, we created topics and clustered these topics into categories. Each category informed one or more sections of the study-developed rehabilitation information sheet. We outlined differences in findings based on our two primary stratifications—across institutions and disease categories.
2.4.2 |. Information Sheet Survey
We summarized the survey data using descriptive statistics and revised the information sheets based on survey findings.
3 |. Results
Forty-six individuals completed interviews, including 13 CCS and 33 caregivers (Table 1). Of the 42 CCS represented by the 46 participants, all were referred to PT (100%), 95% to OT, and 52% to SLP. Interviews averaged 32 min (range: 18–49). Forty-one interview participants (n = 11 CCS, 30 caregivers) and 36 healthcare providers completed the information sheet survey. Almost half of the clinician participants were pediatric oncologists (Table S1).
TABLE 1 |.
Participant demographics.
| Characteristic | Site 1 (Total n = 22) | Site 2 (Total n = 24) | Total Sample (n = 46) |
|---|---|---|---|
|
| |||
| Survivor participants | n = 6 | n = 7 | n = 13 |
| Age at time of interview; mean (SD), range | 18.33 (2.58), 15–22 years | 14.83 (2.01) 12–17 years | 16.45 (2.84) 12–22 years |
| Child’s age at diagnosis; mean (SD), range | 13.17 (4.58), 5–17 years | 11.05 (3.37) 6–15 years | 12.03 (3.95) 5–17 years |
| Disease group, n (%) | |||
| Blood cancer | 2 (33) | 2 (28.5) | 4 (31) |
| CNS tumor | 2 (33) | 2 (28.5) | 4 (31) |
| Solid tumor | 2 (33) | 3 (43) | 5 (38) |
| Gender,+ n (%) | |||
| Boy/Man | 2 (33) | 4 (57) | 6 (46) |
| Girl/Woman | 3 (50) | 3 (43) | 6 (46) |
| Transgender man | 1 (17) | 0 | 1 (8) |
| Genderqueer | 1 (17) | 0 | 1 (8) |
| Race, n (%) | |||
| African American/Black | 2 (33) | 0 | 2 (15) |
| White | 4 (67) | 3 (43) | 7 (54) |
| Prefer to self-describea | 0 | 1 (14) | 1 (8) |
| Prefer not to answer or unsure how to answera | 0 | 3 (43) | 3 (23) |
| Ethnicity, n (%) | |||
| Hispanic or Latino | 0 | 4 (57) | 4 (31) |
| Parent/Caregiver participants | n = 16 | n = 17 | n = 33 |
|
| |||
| Age; mean (SD), range | 41.06 (8.23), 27–59 | 39.12 (5.77), 30–50 | 40.06 (7.02), 27–59 |
| Child’s disease group, n (%) | |||
| Blood cancer | 5 (31) | 6 (35) | 11 (33) |
| CNS tumor | 6 (38) | 6 (35) | 12 (36) |
| Solid tumor | 5 (31) | 5 (29) | 10 (30) |
| Gender, n (%) | |||
| Man | 0 | 3 (18) | 3 (9) |
| Woman | 16 (100) | 14 (82) | 30 (91) |
| Race, n (%) | |||
| African American/Black | 1 (6) | 0 | 1 (3) |
| Asian | 0 | 1 (6) | 1 (3) |
| Native American or Alaska Native | 0 | 1 (6) | 1 (3) |
| White | 14 (88) | 12 (70) | 26 (79) |
| Prefer to self-describea | 1 (6) | 2 (12) | 3 (9) |
| Prefer not to answer or unsure how to answera | 0 | 1 (6) | 1 (3) |
| Ethnicity, n (%) | |||
| Hispanic or Latino | 0 | 3 (18) | 3 (9) |
| Employment status, n (%) | |||
| Full-time employee | 6 (38) | 6 (35) | 12 (36) |
| Part-time employee | 1 (6) | 0 (0) | 1 (3) |
| Stays at home full-time with child(ren) | 5 (31) | 3 (18) | 8 (24) |
| Medical leave | 0 | 1 (6) | 1 (3) |
| Unemployed | 0 | 5 (29) | 5 (15) |
| Retired | 1 (6) | 0 | 1 (3) |
| Other | 2 (13) | 2 (12) | 4 (12) |
| Missing | 1 (6) | 0 | 1 (3) |
| Education level, n (%) | |||
| Graduated high school or GED | 3 (15) | 5 (29) | 8 (24) |
| Some college | 2 (10) | 1 (6) | 3 (9) |
| Associate’s degree | 3 (15) | 0 | 3 (9) |
| Bachelor’s degree | 5 (25) | 5 (29) | 10 (30) |
| Graduate or professional degree | 3 (15) | 6 (35) | 9 (27) |
Self-descriptions of race included Middle Eastern, Hispanic, and Mixed race; some survivor participants reporting Hispanic Ethnicity reported they were unsure how to describe their race. Other employment status includes self-employed.
Gender and race is >100% because participants could select all options that apply. For survivors who were not interviewed, gender was extracted from the electronic health record, and parents reported the child’s race.
We summarized key findings into four categories: benefits of rehabilitation, timeline for initiating rehabilitation, barriers and facilitators to care, and prioritization of rehabilitation. Each of these categories informed one or more sections of the information sheet, as outlined below each category heading.
3.1 |. Category 1: Benefits of Rehabilitation
This category informed two information sheet sections: How can therapy help? and Can it help kids feel better?
In addition to expected benefits of rehabilitation, such as increased independence, learning/relearning skills, and improved function, participants explained how engaging in rehabilitation promoted normalcy following a new pediatric cancer diagnosis, had mental health benefits, and offered education and support for caregivers (Table 2). Participants described how it can take time to see improvements from rehabilitation and the purpose of rehabilitation is not always obvious up front. Participants observed benefits across disease types and institutions. Rehabilitation supported engagement in preferred activities and connected CCS to their pre-cancer selves:
TABLE 2 |.
Benefits of rehabilitation and supportive quotes.
| Topic | Quote | Participant |
|---|---|---|
| Skill acquisition, function, and independence | “It got to the point where he couldn’t even hold a pen or pencil or feed himself. So just giving him his independence back.” | Parent, 7-year-old, T-cell ALL, Site 2 |
| Promotes normalcy | “The mental aspect of all the changes that she had to go through bracing cancer and realizing this is her new normal. I think physical therapy kind of bridged that gap between being this major diagnosis to a new normal, and how to adjust to that new normal.” | Parent, 15-year-old, Ewing sarcoma, Site 1 |
| Mental health benefits | “I feel like she got stronger, but yeah, not just physically. But I think emotionally, yeah, she got stronger. And-and more confident, and just happier.” | Parent, 11-year-old, meningioma, Site 2 |
| Caregiver support and education | “They can show you ways to help your kiddo …traditional ways to teach a kid to walk are gonna be different than, you know, if your kiddo’s behind. Um, so that can be hard and scary if you are not doing that, but the therapist really put that at ease and they make it way easier.” | Parent, 20-month-old, high-grade glioma, Site 1 |
| Changes can take time, stick with it | “I’d probably share the multiple times I went and how it’s a—it’s not short. You can’t get it done in one week. It’s months that you have to be working. And I think I’d share if you’re committed that you can do it. You can be better—become better.” | Survivor, 15-year-old, Ewing sarcoma, Site 1 |
Helping me, like, relearn all the stuff I was able to do, like, help me get back to my…normal self and me doing my normal activities. (Survivor, 13-year-old, pilocytic astrocytoma, Site 2)
Engaging in rehabilitation created moments of joy and uniquely positive experiences within a child’s cancer care, which participants otherwise characterized by pain, sadness, and unknown outcomes. Participants described immediate and longer term improvements in mood due to rehabilitation.
I think a huge part that rehab played was just his attitude. Like, he calls them his friends…’Cause they’re the only ones that don’t poke him. You know, they’re the only ones that don’t hurt him. And they bring toys. You know, it’s, like, the only fun thing that he gets to do when we’re there. (Parent of a 4-year-old with B-cell acute lymphoblastic leukemia, Site 2)
Not all children and families experienced rehabilitation as universally beneficial throughout treatment. A parent of an infant noted: it’s kinda hard to see if he benefited from it ‘cause he was just so little and he was already kind of developing anyway and like working on himself. (Parent of a 5-year-old with hepatoblastoma, Site 2)
3.2 |. Category 2: Timeline for Initiating Rehabilitation
This category informed one information sheet section: When is a good time to start?
We asked participants when they believed was a good time to receive information on rehabilitation services after a cancer diagnosis. Almost all participants recommended introducing rehabilitation as soon as possible. Most proposed between 1 week and 1 month after diagnosis as an ideal timeframe. Solid and CNS tumor participants who underwent surgery recommended introducing rehabilitation pre-operatively and starting rehabilitation within a few days post-operatively.
Participants emphasized that though the amount of information they received in the early phases following the cancer diagnosis was overwhelming, receiving information on rehabilitation during this time was vital. To help manage challenges with hearing, comprehending, and retaining information soon after diagnosis, participants explained it is important to repeatedly educate families about rehabilitation (Table 3).
TABLE 3 |.
Participant quotes related to timeline for initiating rehabilitation and prioritization of rehabilitation post-diagnosis.
| Topic | Quote | Participant |
|---|---|---|
| Timeline for initiating rehabilitation following a new pediatric cancer diagnosis | ||
| Present information on rehabilitation multiple times | “I think presenting [information about rehabilitation] multiple times. I wouldn’t just present it once and assume a parent has absorbed it all and will remember it. I think hearing about it early…Probably before the surgery, and then, of course, after the surgery, to get it going. I think early, and then recurrent.” | Parent of a 7-year-old with ganglio-neuroblastoma, Site 2 |
| A proactive approach to rehabilitation is valued | “Having someone come pretty much immediately. It was in those first few days. It felt, like, more proactive and less retroactive in making sure that everything was taken care of while we were there…that was really helpful.” | Parent of a 6-year-old with B-cell ALL, Site 2 |
| Early rehabilitation involvement supports long-term engagement | “I think that if you started it when you’re not feeling as horrible yet from, like, all the chemo, um, then it would be easier to continue to do through all of the awful chemo.” | Survivor, 19 years old with T-cell ALL, Site 1 |
| Rehabilitation needs and timing of introduction vary across cancer types | “Well, for us, immediately. Um, but I can definitely see in other situations where maybe waiting until things have calmed down a bit, where we’re not so focused on, you know, lifesaving measures. Um, so, yeah, I think it’s just—yeah, it’s dependent upon a situation. So, for us, definitely as quickly as possible.” | Parent of an 11-year-old with anaplastic ependymoma, Site 1 |
| Successful, positive moments in therapy early after diagnosis | “I would say jump in right away because they—like I said, we saw benefits the first time, and you have to learn how to take the small victories, and I saw those more through PT than I did with his treatment ’cause with his treatment, it got worse before it got better, and so having those little victories in PT kinda helped keep us going, like, focusing on positives.” | Parent of a 2-year-old with B-cell ALL, Site 2 |
| Prioritization of rehabilitation | ||
| Therapy is prioritized during cancer care | “For my daughter, it was not only a priority, but it was, like, literally necessary.” | Parent of a 10-year-old with medulloblastoma, Site 2 |
| “We’ll always find the time [for therapy]. We’ll find a way to make it work for him. Like that’s our priority.” | Parent of a 7-year-old with T-cell ALL, Site 2 | |
| Therapy is deprioritized when the child does not feel well | “And like, just getting out of bed going to the bathroom was hard, so there was no way we were going to leave the house and go to physical therapy on top of her appointments that she also had. And so it was just kind of managing like what are we actually capable of doing right now and what’s beneficial to her right now.” | Parent of an 11-year-old with ALL, Site 1 |
| Competing priorities can interfere with therapy | “My mom let—stopped it for a little bit because I needed, I was getting behind on my work. And it was a little hard, so I had to get catched up. But once I’m all caught up, um, she’s gonna sign me back up.” | Survivor, 15 years old with Pre-B-cell ALL, Site 2 |
| Therapy is a priority, but occasional pauses in therapy can be beneficial | “I will say, during when we had this couple week break because of scheduling, where he just didn’t have appointments. It did feel like a nice little reprieve of not going to the [hospital] so much during those weeks. I didn’t realize how taxing it really is to be going there so often. I don’t mind it because I know how important it is, that’s just the priority.” | Parent of a 7-year-old with ganglio-neuroblastoma, Site 2 |
Participants encouraged early involvement of rehabilitation, valuing a proactive approach that prepared families for potential challenges and facilitated long-term therapy engagement. A few participants suggested introducing rehabilitation when a specific need arises. Others expressed there may not be an “ideal time” to introduce rehabilitation due to the overwhelming nature of a pediatric cancer diagnosis (Table 3).
Early introduction of rehabilitation helped participants look toward their or their child’s future and offered hope:
I would say immediately…I think it’s the one thing that puts you a step forward instead of stuck—- in the unknown…physical therapy services are the one hope that happens because they start the future. (Parent of a 17-year-old with giant cell bone tumor, Site 1)
3.3 |. Category 3: Barriers and Facilitators to Rehabilitation Access and Participation
Participants described how multiple factors influenced their ability to access and participate in rehabilitation. Our team is preparing a separate manuscript to provide an in-depth analysis of these factors. In the current article, we expand on a few points that informed the information sheet.
3.3.1 |. Barriers
This sub-category informed the What challenges may occur? information sheet section.
Lack of Awareness of the Unique Needs of Children with Cancer
Caregivers discussed challenges engaging with some providers who were unaware of the unique needs of CCS. This lack of awareness was more common in outpatient clinics in the home community and/or school settings. Clinicians’ lack of knowledge on pediatric cancer negatively impacted the rehabilitation experiences of some.
I think they’re used to kids with issues and disabilities and whatnot, but maybe they’re not used to as much with kids who are taking chemo. I think they need to be made aware of the issues that cancer patients, in particular, deal with. (Parent of a 4-year-old with Pre-B-cell ALL, Site 1)
Outpatient Scheduling
Participants at Site 1 discussed a need for more flexibility in scheduling outpatient therapy, including additional appointment times, easier ways to adapt the schedule to evolving medical needs, and if we had his oncology visit change. (Parent of a 6-year-old with acute myeloid leukemia, Site 1). Participants at Site 2 reported ease and flexibility of scheduling therapy in coordination with their oncology care.
Insurance
Insurance issues impeded outpatient therapy access. Site 1 participants discussed insurance challenges more frequently than Site 2 participants. Insurance challenges were time-consuming to address and stressful for families.
A lot of the private places around here didn’t take our insurance…we were doing it at [the hospital] once a month…and he ended up needing more…Trying to get, you know, insurance on board and the facilities, finding a facility that could carry out the orders was kind of a—more of a pain. (Parent of a 6-year-old with acute myeloid leukemia, Site 1)
Both scheduling and insurance challenges led to unwanted gaps in therapy.
3.3.2 |. Supports
This sub-category informed the What can help during therapy? section of the information sheet.
Communication
Clear communication helped participants maximize rehabilitation benefits and manage arising challenges. Open communication was important for goal development, education, and care coordination.
Find who you’re comfortable with, who your child’s comfortable with, communicate what your expectations are, communicate if you’re comfortable with something or something’s just not working. (Parent of a 2-year-old with B-cell ALL, Site 2)
Provider Consistency
Working with consistent providers supported relationship development, trust, and facilitated engagement in therapy. In an inpatient oncology setting where medical providers are constantly rotating, rehabilitation team members were sometimes the child’s most consistent providers:
Consistency with people, I feel like, helps me out a lot because I have, like, extreme anxiety. So it’s just a lot easier when I have someone I can recognize and not have to constantly be re-explaining everything to new people. (Survivor, 13-year-old, rhabdomyosarcoma, Site 2)
3.4 |. Category 4: Prioritization of Rehabilitation
This category informed one section of the information sheet: What if therapy feels like too much?
Overall, participants expressed that rehabilitation was a priority during their or their child’s cancer care due to its benefits. Even when they dealt with barriers to access (e.g., scheduling) and participation (e.g., nausea), therapy remained a top priority for most families. When asked if therapy was a priority for them during treatment, one survivor shared:
Oh, yes. ‘Cause my cancer was, like, in my leg…It was like all how we can back to what normal is, which is like walking, running, like doing everything with my leg that anybody else would be able to do. (Survivor, 14-year-old, osteosarcoma, Site 2)
Though most participants acknowledged that rehabilitation was worth prioritizing, sometimes competing circumstances required they take a break from regular therapy (Table 3).
Parent and survivor priorities regarding rehabilitation varied somewhat between cancer types. Individuals with blood cancers described therapy as a priority but more frequently discussed deprioritizing therapy when the survivor did not feel well. The CNS tumor group emphasized that rehabilitation was a top priority early on when they were at the height of their rehabilitation needs post-operatively.
[My child] had to completely relearn to walk and talk, so rehabilitation almost became more of a focus than even the treatment was at that point. Because we didn’t know what was going to happen with [child] and if he was gonna get better, be able to walk, and those types of things. So, over time, those things have just gotten less and less, where we don’t have to rely on it as much. (Parent of an 11-year-old with anaplastic ependymoma, Site 1)
3.5 |. Information Sheet Feedback
We summarized the results from these four qualitative categories to create two, one-page information sheets on pediatric cancer rehabilitation services: one for caregivers and one for CCS. CCS, caregivers, and healthcare providers positively reviewed the information sheet (Figure 1A,B). Almost all individuals (99%) reported the information was easy to understand, and the amount of information was just right for most (86%). All but one healthcare provider (97%) reported the information was applicable for a broad group of CCS. The quantitative data largely confirmed the qualitative synthesis, evidenced by participant high agreement levels with information sheet statements (Figure 2). We incorporated more positive framing and removed two statements based on lower agreement ratings and participants’ open-ended responses: (1) “Since cancer is rare among children, some people may not be aware of the unique needs of children with cancer” and (2) “Therapy may not always be the most important thing for you and your child.” Some individuals reported they wanted to change something (16%) or that there was something missing (21%) on the information sheet (Figure 1C). Table S2 includes all open-ended responses and how we incorporated participant feedback into the final information sheets, which are available in English and Spanish (Figure 3, Sections S3 and S4). Most providers were very likely (44%) or likely (42%) to use the information sheet, 14% were neutral on using the sheet, and none were unlikely to use it.
FIGURE 1 |.
Participant ratings of information sheet content. A) includes ratings of comprehension of the information sheet content for themselves, their patients (for provider respondents), and for children ages 12+ as well as ratings of if the quotes and icons included on the information sheet were helpful. B) includes ratings of whether the volume of information was too little, too much, or just right. C) documents the number of respondents who selected ’yes’ when asked if there was something on the information sheet they felt was missing, wanted to change, or disagreed with. *Note: Providers were not asked a question about the information sheet icons.
FIGURE 2 |.
Participant agreement with information sheet statements. Respondents rated their agreement with the following statements on the information sheet. When respondents did not agree with a statement, they provided open-ended responses about what they disagreed with or what they were questioning. The phrasing of the statements varied between information sheet versions and participant type; statements on the last survey version for parents/caregivers are listed here. All survey versions are available in Section S2. Note: Statements included on the information sheet varied slightly by participant type; survivors were not asked Statement 5 on this graph about supports.
Statement 1: Therapy can help your child learn and grow with things like:
• Moving (walking, climbing), doing things on their own, talking;
• Getting stronger, having more energy;
Statement 2: Even though therapy may be hard sometimes, therapy can also be fun, help your child believe in themselves, and improve your child’s mood.
Statement 3: It may feel like there is no right time to start therapy. Starting therapy as soon as you are able can help your child in the long run.
Statement 4: Since cancer is rare among children, some people may not be aware of the unique needs of children with cancer.
Statement 5: It helps if your therapist knows what to expect with the ups and downs of cancer treatment.
Statement 6: Therapy may not always be the most important thing for you and your child.
FIGURE 3 |.
Caregiver information sheet on rehabilitation during cancer care. Downloadable versions of the caregiver and CCS information sheets are available in English and Spanish in Sections S3 and S4, respectively. CCS, childhood cancer survivor.
Because participants shared how overwhelmed they are with information, we added a question for CCS and caregivers at Site 2 about preferred method(s) for receiving information about rehabilitation (Table S3). Their most preferred method was to have a medical team member talk with them (17 of 23 respondents; 74%), followed by MyChart communication, the electronic health record patient portal (57%).
4 |. Discussion
This study aimed to characterize the rehabilitation experiences of CCS and caregivers to inform the development of a pediatric cancer rehabilitation information sheet. Our findings highlight that rehabilitation is a valued part of pediatric cancer care and a priority for CCS and their caregivers. Participants expressed a desire for early education about rehabilitation following diagnosis and ongoing engagement throughout treatment. Although some individuals faced access and participation barriers, they typically aimed to overcome these barriers because they saw rehabilitation as an important part of cancer care and recovery. Participants reported that rehabilitation had a wide range of benefits, including creating positive experiences within cancer care and promoting mental well-being.
To support early education and information access, we developed a resource informed by CCS, caregivers, and clinicians that provides an overview of key information about rehabilitation during cancer care. Using the information sheet can facilitate discussions of less recognized roles of rehabilitation, such as prevention of impairments and supporting natural skill development in children. Incorporating education on rehabilitation into cancer care is important because CCS and parents want more information up-front about the impact of cancer on QOL and daily activities [22]. Effectively communicating information about rehabilitation likely requires multiple dissemination channels [23]. In the current study, caregivers preferred to receive information by talking with their medical team, whereas CCS preferred communication through MyChart (patient portal) or email. Previous research demonstrates that CCSs generally want to receive medical information from their healthcare teams and parents [24]. As many families prefer in-person communication, medical teams can use these information sheets as guides to provide an overview of rehabilitation during cancer care. They can supplement conversations with electronic delivery of information. Optimal methods for dissemination continue to evolve. CCSs often seek information from media, and emerging research is testing methods to effectively use social media to support adherence to cancer treatment [24, 25].
Emerging evidence supports the benefits of early access to rehabilitation for children with cancer [26, 27]. Although the study-developed information sheets can support education, future research should test whether access to information increases use of and adherence to rehabilitation. Given the multi-level barriers to rehabilitation, it is unlikely that education alone increases access. To support equitable access to rehabilitation care for CCS, directly integrating rehabilitation clinicians into cancer care should become the expected standard across all pediatric cancer centers. Direct integration of rehabilitation clinicians significantly decreased the length of time to an outpatient PT evaluation from 335 to 52 days post-diagnosis at a single center [28]. Yet, comprehensive pediatric cancer rehabilitation programs remain limited [13, 28]. Rehabilitation integration is crucial to address the immediate and long-term negative effects of cancer and its treatment with the overall goal of enhancing function and QOL among CCS.
This study has several limitations. We aimed to develop an educational resource applicable to a broad range of CCS, which limits its specificity based on diagnosis or rehabilitation approach. Future work should develop resources relevant to specific pediatric cancer populations, including palliative rehabilitation. We translated the information sheets into Spanish to support education of a broader group, but the Spanish language versions require additional testing with individuals whose primary language is Spanish. Although the multisite design is a strength, these findings are limited to two US institutions. Given the variable structure of oncology rehabilitation programs and resources, the information sheet content may not apply across contexts. Other institutions can consider adapting this evidence-based resource to their local context. We did not examine participants’ experiences with rehabilitation medicine physicians and psychosocial support, key components of rehabilitation teams. However, this work provides a comprehensive overview of PT, OT, and SLP during cancer care. We included child participants 12 and older; future work should adapt the information sheet for younger audiences and test comprehension and acceptability among younger age groups.
5 |. Conclusion
Rehabilitation is highly valued by CCS and parents/caregivers, necessitating its integration into pediatric cancer care. CCS and parents/caregivers prioritize rehabilitation and want direct and prompt communication about these services from their medical team following diagnosis. Collaborative development of informational resources with CCS and their caregivers can enhance awareness of the benefits of rehabilitation, potential barriers and supports to care, and ultimately promote rehabilitation utilization.
Supplementary Material
Additional supporting information can be found online in the Supporting Information section.
Acknowledgments
This work was funded by the Siteman Research Program Catalyst Award, Cancer Prevention and Control. Allison L’Hotta’s time was supported in part by the National Cancer Institute P50 CA244431 and the Foundation for Barnes-Jewish Hospital.
Funding:
This work was funded by the Siteman Research Program Catalyst Award, Cancer Prevention and Control. Allison L’Hotta’s time was supported in part by the National Cancer Institute P50 CA244431 and the Foundation for Barnes-Jewish Hospital.
Abbreviations:
- ALL
acute lymphoblastic leukemia
- CCS
childhood cancer survivor
- CNS
central nervous system
- OT
occupational therapy
- PT
physical therapy
- QOL
quality of life
- SLP
speech–language pathology
Footnotes
Conflicts of Interest
The authors declare no conflicts of interest.
Data Availability Statement
Research data are not shared.
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Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Supplementary Materials
Data Availability Statement
Research data are not shared.