Perceptions of oncology healthcare professional providing care to older adults prescribed oral anticancer medications in the United States: A qualitative study

Abstract

Introduction:

Oral anticancer agents (OAAs) offer a level of convenience to receive cancer care in the home environment. However, oncology health care providers face barriers when providing patient education to ensure patient and caregiver’s ability to learn and adhere to the medication regimen. The purpose of this study was to explore the perceptions of oncology health care providers who provide care to older adults, aged 65 and older, prescribed OAAs using the Information-Motivation-Behavioral Skills model as a guiding framework.

Methods:

A qualitative study using a phenomenological approach, utilizing a semi-structured interview guide was used to elicit oncology health care provider perceptions of providing care for older adults prescribed OAAs. Interviews were audio recorded, transcribed and coded using Atlas.ti version 9. Inductive applied thematic analysis techniques were employed to identify emergent themes.

Results:

Participants (N = 24) were mainly female and registered nurses (45.8%). The over-arching themes included 1) patient education and assessing comprehension, 2) adherence support, and 3) most challenging aspects of oral anticancer agent care.

Conclusion:

Findings show that delivering patient education and managing ongoing surveillance of OAAs is vital for patients aged 65 and older, however standard practices for these areas have not been established and vary depending on the resource of the institutions, the type of prescribed OAAs and patient-specific differences.

Background

The number of oral anticancer agents (OAAs) approved by the Food and Drug Administration (FDA) continues to increase rapidly.^1–4 Although the oral route of OAAs offers a level of convenience to receive cancer care in the home environment, patients and their caregivers can encounter issues following complex regimens and managing symptoms, side effects, and toxicities that negatively impact outcomes such as adherence and quality of life.^3–13

Adherence to OAAs is critical as suboptimal doses can adversely affect medication efficacy and response rates, leading to disease progression and mortality.^8,14 Over-adherence is also an issue that can lead to toxicities, increased morbidity, and OAA dose reduction or interruptions.¹⁵ Causes of nonadherence are multifaceted and include patient, provider, and system-level factors. Patient-level factors include a lack of understanding of the treatment regimen due to cognitive decline, anxiety, depression, low health literacy, forgetfulness, or the experience of symptoms or side effects.^4,8,16 Provider-level factors that can negatively impact adherence include poor patient-provider communication, language barriers, and substandard education.⁸ System-level factors include the cost of OAAs and insurance coverage for OAAs (high out-of-pocket co-pays) that can trigger financial toxicity.^8,17 Importantly, other aspects of the treatment such as complexity (e.g., cycling, combined therapy) and patient characteristics, such as comorbid conditions resulting in polypharmacy, can compromise adherence.^8,18

In addition to adherence, patients and caregivers must demonstrate self-efficacy in monitoring their symptoms, side effects, and toxicities in the home without the close observation of oncology healthcare providers (OHCPs). Timely reporting of such adverse effects to OHCPs is essential to prevent additional complications. Thus, OHCPs including oncologists, registered nurses, advanced practice nurses, and pharmacists play a critical role in educating patients and caregivers to ensure safe OAA administration and how and when to report symptoms, side effects, and toxicities_.^{5–7,9,11,13,14}

Although education is crucial, ongoing surveillance is also imperative.² Current clinical guidelines offer standards for OHCPs to guide education and ongoing monitoring for patients prescribed OAAs.¹⁹ For example, before the first dose of OAAs is administered, the OHCP should assess patient and caregiver comprehension of education which includes diagnosis, OAA dose, route and duration of treatment, goals of treatment (curative vs. palliative), planned follow-up, and assessments of barriers such as social determinants of health, and financial constraints.¹⁹ OOAs have the potential to interact with food and over-the-counter or prescription drugs, especially in older adults who often encounter polypharmacy due to multiple comorbidities.^19,20 Such education should also include interactions with herbal, vitamins, or other complementary medications.¹⁹ Whether or not an individual consumes food before OAA administration can impact the pharmacokinetics of a drug; however, this is drug-specific.^20,21 Providing education regarding whether to take the OAA with food or on an empty stomach is important to ensure the best outcomes for absorption.²⁰

Furthermore, the guidelines outline that patients and caregivers should be directed on what to do in the event of a missed OAA dose, handling body secretions, what to do with unused medication, the planned timeline for laboratory and other diagnostic testing, and how to reach the OHCP both during and outside regularly business hours.¹⁹ Ongoing surveillance should also entail assessment of adherence, barriers to adherence, and toxicity profiles.¹⁹ Such education is important as the monitoring frequency for individuals prescribed OAAs has been reported to be less rigorous compared to traditional intravenous chemotherapy.^22–24

However, there are several barriers that OHCPs face when providing patient education.²⁵ Factors such as limited time, heavy workload, varying priorities, difficulty in communication, insufficient knowledge and skills, and lack of comprehensive tools can all negatively impact patient education.²⁵ These barriers can be heightened when educating older adults, who may require tailored education to account for cognitive and physical changes (e.g., poor vision) due to age or the disease process and the complexity of treatment if taking medication for other chronic conditions.^4,19 Importantly, OAAs are often prescribed to older adults aged ≥60 years, given this population’s high incidence of solid tumor cancers.²⁶ OHCPs must assess the patient and caregiver’s ability to learn and comprehend education, their learning preferences (e.g., written, verbal), and their readiness to learn and then evaluate the comprehension of the material.¹⁹

This study aims to explore the perceptions of OHCPs who provide care to older adults, aged 65 and older, prescribed OAAs using the Information-Motivation-Behavioral Skills (IMB) Model as a guiding framework. The IMB Model proposes that information, motivation, and behavior skills are fundamental determinants of health behavior outcomes, including adherence and self-management of symptoms. This study specifically targeted older adults as they have been noted as a vulnerable population in the oncology literature.²⁶

Methods

Ethical approval

This study was approved by the University of South Florida (Study # 000264) and the Scientific Review Committee at Moffitt Cancer Center (Study # 20727). Informed consent was obtained via telephone prior to data collection.

Data collection

This was a qualitative study with a phenomenological approach, utilizing a semi-structured interview guide to elicit OHCP perceptions of providing care for older adults, 65 years of age and older who were prescribed an OAA. Participants were recruited from a national sample of oncology care centers. Recruitment efforts included social media via national, regional, and state professional organizations, email alerts, and snowball sampling. Eligibility criteria included oncologists, advanced practice nurses, registered nurses, and pharmacists who were actively practicing and providing care to patients aged 65 years and older and prescribed an OAA. Interviews were conducted between October 2021 through February 2024. All interviews were conducted by VKM to ensure consistency, audio-recorded with the participant’s permission, and transcribed verbatim. Sample questions under each construct of the IMB Model are provided in Supplemental Table 1. Participants received a $30 Walmart e-gift card as compensation for their time. Field notes were taken during and immediately following each interview to enrich the contextual interpretation of participant interviews.

Analysis

Descriptive statistics were used to describe the sample using SPSS (version 29). Two PhD level research team members (VKM and MNC) trained in qualitative methods and one PhD student (CG) reviewed all transcripts independently to become familiar with the data. A codebook was developed, using both a priori and emergent themes. A thematic analysis was employed. Research team members met weekly to share individual analyses, justify coding, and discuss discrepancies until a consensus was met. Inter-rater reliability was assessed with Cohen’s Kappa coefficients at 0.83. Analytic decisions made during research team meetings were documented to ensure the study findings’ consistency, accuracy, and credibility.

Results

Participants (N = 24) were mainly White (62.5%), non-Hispanic (91.6%), female (95.8%), and registered nurses (45.8%). The mean age of participants was 42.7 years (Table 1). Themes included OAA patient education and assessing comprehension, adherence support, and most challenging aspects of OAA care. These themes are described in detail below and include supporting quotes.

Table 1.

Demographics and professional and educational characteristics (N = 24).

Characteristic	Mean
	n (%)
Age (years)	47.2
Sex
Female	23 (95.8)
Male	1 (4.2)
Ethnicity
Hispanic/Latino	2(9)
Non-Hispanic/Latino	22 (91)
Race
Asian	5 (20.8)
Black/African American	3 (12.5)
White	15 (62.5)
More than one race	1 (4.2)
Professional Title
Registered Nurse	11 (45.8)
Advanced Practice Nurse	7 (29.2)
Physician (DO/MD)	3 (12.5)
Pharmacist	3 (12.5)
Number of Years in Current Position
Less than one year	2 (8.3)
1–5 years	11 (45.9)
6–10 years	6(25)
11–15 years	3 (12.5)
Above 16 years	2 (8.3)
Type of Cancer Center Where Employed
Academic/Teaching Hospital with National Cancer Institute-designation	21 (87.5)
Local Cancer Center	3 (12.5)

OAA education for patients & assessing comprehension

OHCPs were extremely involved in educating individuals who were prescribed OAAs. Education was provided at the initial visit and continued throughout their care. Each type of OHCP tended to assume a different role in the education process. The physicians’ main responsibility was to provide information on the diagnosis, prognosis, and overall treatment plan. If the patient did not understand the intent of the OAA treatment (e.g., curative versus palliative), they were referred back to the physician immediately. As one physician noted, the importance of first understanding why the medication is prescribed is the first step to ensure the patient adheres to their treatment.

“I think that improving compliance often starts with better communication. I think if the patient understands why they are taking a particular medication, the importance of its schedule, then I think it definitely increases compliance as opposed to feeling like I have to do this thing. I think that’s number one.” Participant 3, physician

Pharmacists were found to be accountable for reiterating the treatment plan, specifically targeting information in the realm of the dosing regimen, what to do in the event of a missed dose, drug-drug or food-drug interactions, and symptoms, side effects, and toxicities. Participant 1, a pharmacist shared:

“We go over how many tablets does the patient have to take and at what times do they have to take it? If they miss a dose, how long do they have until they should skip that dose? Should they take it within a certain window of time? Should they take it with food or on an empty stomach or some drugs have even more specific recommendations about the caloric intake and the percentage of fat that is allowed within a timeframe of taking the drug? Do they need to separate it from antacids, H2RAs or do they need to avoid PPIs? I think all of those things can be encompassed under the word “adherence” because it comes down to taking the drug properly, so that it’s absorbed and the patient gets the optimal effect from it.”

Nurses mainly reinforced education and had a larger role in follow-up and symptom tracking, when to contact OHCP in the event of issues, and financial assistance referral. Importantly, there was no standardized education reported with the exception of individuals who were enrolled in an oral chemotherapy program. Most education encompassed a combination of verbal and written materials. Participant 8, a registered nurse, added,

“I typically come in when I’m bringing in brochures. The majority of my patients are Multiple Myeloma patients that are on oral oncolytics, including Revlimid, Pomalyst, not so much Thalidomide, Selinexor. We have wonderful educational brochures that I go through page by page. They’re about 40-page brochures from BMS [Bristol Myers Squibb]. It goes through the patient-physician agreement form with all the side effects, including those that are common, not so common, and obviously emergency symptoms, like clots. Most of the talking I’m doing right now is about the immunomodulatory drugs. Going through the side effects and when to call us, as well as financial assistance because obviously the drugs are super financially toxic to many of our Medicare patients, but 9 times of 10—even more so than 9 times out of 10, we can get them assistance through HealthWell or LOS. We’re doing a lot of that. It’s probably about a 50-min teaching session that I do but outlining the side effects and things to watch out for and when to call us.”

OHCPs voiced the need to ensure patients prescribed OAAs understood their medication regimen, the potential for symptoms, side effects, and toxicities, when to contact the OHCP, and how to store and dispose of the medication. Most study participants mentioned using open-ended questions or the teach-back method to assess patients’ understanding of education material. Issues with patients’ comprehension were related to cognitive issues, receiving too much information at one time, the level of treatment complexity, and anxiety. Participant 2, a pharmacist, shared:

“Well, a whole variety of issues. Some just simple cognition issues. The ability to even—for example, Xeloda is a perfect example because it’s typically multiple tablets and then a schedule that’s maybe on for 14 days, off for 7, for example. Just having a difficult time grasping that structure in terms of how to take their medication. Not just recalling it but even—’cause what I typically do is, I’ll teach them the dosing, upfront, and ask them to recall then. Then again, at the end of the education, after we’ve gone through side effects and everything, we do a bit of a wrap-up, and I’ll ask them to repeat back the most important information. I’ve noticed issues with recall, not just in the end of wrap-up but also in the beginning. We’ve enlisted this phrase. “I just wanna make sure that I covered everything that needs to be covered in a adequate amount. Do you mind to just repeat back to me how you’re gonna take this medication? How many pills at what time? With or without food?” Then I ask them, “How are you feeling about starting this medicine?” Those are the ways that we use. I teach back, I guess. Then just, “Overall, how are you feeling about this?”

Participant 18, an advanced practice nurse, also noted paying special attention to older adults’ comprehension of the treatment regimen and referring back to the physician if concerns were noted. She also shared that it was rare to have patients not understand the regimen. She noted:

“A lot of my patients are older, 65 or older, so I will ask them multiple times, “Does that make sense,” or “Do you understand?” I’ll ask them to repeat back to me, “What is our plan, how long will you take this medication, or have you identified—” if it’s twice daily, and I’m saying that they need to take it the same time every day—“have you identified a time that works both in the morning and in the evening?” If I get a patient where they’re just not understanding, then I would take that concern to their oncologist, my M.D. However, if I can be honest, I just haven’t had an issue where a patient didn’t understand.”

Participant 6, an advanced practice nurse, emphasized that assessing self-efficacy needs to be a recurring process when providing care. She noted that patients can often recall the education and repeat it back to OHCP but after some time has passed, details get lost. She voiced,

“I’ll tell you that, there is a drawback to that, too, because it’s fresh information. I told them. They’re sort of repeating it back to me, and they pretty much do it very well every time we tell them to do [this] on the spot. That may not be very accurate if we are gonna call them ten days later, because education has now gone old, and they don’t remember what was told to them. But the best equipment, the best tool we use is teach-back methods. It has a high accuracy. I just don’t know what is the longevity of this?”

Adherence support

There were several interventions to support adherence to OAAs. These included medication calendars, oral chemotherapy programs, chemotherapy compliance programs, and ongoing surveillance.

Calendars.

Due to the complexity of OAA medications, such as cycling, combined therapy, or avoiding interactions with other drugs in the case of polypharmacy, calendars provided detailed information of dosing regimens that helped patients organize their OAA medication schedules. Participant 4, a registered nurse, noted, “I actually like to write everything out for the patient. I try to make a really big––as big a calendar as possible so that way, whatever day it is, if they need to take it, I’ll just highlight it and then on the side or on the back of the calendar, I’ll write, “Hey, this is what you do on this specific day with this medicine.” Participant 1, a pharmacist, echoed,

“We make calendars for the patient where we write out when they need to take it, on what dates, and when they need to get their labs as well. We make calendars more so for the complex regimens, so drugs that are not taken on a daily basis. We do an electronic calendar and put it in the patient’s chart, and then we copy it to a Word document that we either print off or send to the patient. Depending on the format, I suppose it could be edited, like a Word document, a patient could edit it themselves or sometimes if it’s just delayed one day past the date that it’s supposed to start, then the patient, if they’re cognitively all there and able to problem solve, then they can just figure like, “Okay, I’m gonna start one day later. I’m gonna end one day later.” It sort of depends on the patient and how much assistance they need, but in a worst case scenario, we could remake the calendar for them.”

Oral chemotherapy program/ chemotherapy compliance programs.

Several OHCPs mentioned their institution having either an oral chemotherapy program or a chemotherapy compliance program to track and monitor patients prescribed OAAs. However, for the oral chemotherapy programs, only certain OAAs were included, meaning that not all patients qualified for the program. Participant 1, a pharmacist, disclosed the process at his cancer center and noted how gaps in the standardization of surveillance can negatively impact cancer care,

“We actually have two processes ‘cause with our oral chemo management program, which we have 42 oral chemo therapies on that program. For those patients on the program, we actually have pharmacy technicians who follow up with the patient because we track their delivery status. If it comes from our pharmacy, or even from an outside pharmacy, we track their status and estimate when they’re going to receive it, and then the pharmacy technician calls to confirm that they got delivered and that they’ve started it more so that it got delivered, and then the patient is instructed to start when their nurse instructs them to start. For the drugs that are not covered by our program, there’s no formal follow-up except by the doctors at their routine office visits to confirm that they have started the medication, and that’s actually been––there’s been a gap in that process for the drugs that are not on our oral chemo program because sometimes doctors have tried to start patients on oral chemo, and then the patient comes one month later, and the doctor finds out that the patient never got their medication, that they never started it, so certainly there’s room to improve”.

Chemotherapy compliance programs were also mentioned. These programs were described to follow specific steps to ensure patients received education, ensure OAA medication acquisition and appropriate follow-up. Such surveillance of the patients included ongoing education by the pharmacists and follow-up by the nurses each week to ensure the patients received the medication and that there were no financial barriers. Participant 5, a registered nurse, mentioned:

“This is a new policy procedure program that we’re doing at [our cancer center]. It’s our QOPI (Quality Oncology Practice Initiative) compliance, so it’s oral chemo compliance. We’ve been doing it for about a year now. When the patient is prescribed the medication, let’s just say Lenvima, they have to sign the consent with the provider. Then we place an order for the patient to have a appointment with the pharmacist. We have an in-clinic pharmacist that will either meet with them or they will do a Zoom call at a later time, whatever is convenient for the patient. They go over all their medications, they go over the side effects, they go over everything regarding that medication that they need to know. Then I call the patient before they receive the medication. A lot of these medications they have to be approved with insurance, or they have to get patient assistance programs, so we don’t really know when they’re gonna get their medications, so usually I’ll start two or three days after it’s prescribed. At that time, usually, they’ll say, “Oh, the company contacted me and said that they’ll be delivering it on the 4th.” Around the 4th, I’ll give them a call before the 4th, and just make sure they’ve received their medication. They didn’t have any issues with cost for the medication, ‘cause that can be a reason why a lotta patients stop the medication. We wanna make sure that they don’t have any cost issues and make sure they understand how to take it. The big one for us is what to do if they miss a dose because we don’t want them doubling up on those medications. —there’s one patient that I called for about six weeks weekly just because it made her comfortable knowing that someone was checking in with her, she wasn’t home alone on this oral chemo medication. Every Thursday I would call her weekly for about six weeks to check in on her to see how she was doing and so that made a huge difference just knowing that on Thursday someone was gonna call.”

In contrast to the oral chemotherapy programs, the compliance programs were available to all patients in the clinic prescribed OAAs. OHCPs detailed very specific timeframes including algorithms to ensure medication acquisition and confirmed initiation of the treatment regimen. Participant 8, a registered nurse, added “It is policy at [our cancer center] that we do these QOPI. It’s an oncolytical assessment. Seven days, we’re calling to affirm that they have drug and they understand how to take it. We go through the instructions. We have to charge for this. We have to document it.” Participant 19 verbalized,

“Initially, we try not to overwhelm them, so what we do is we have this—what we call QOPI—Q-O-P-I. Quality Outpatient—I forgot what it stands for, but essentially, it’s after one week of prescribing it, we give the patient a call and we check up on them and say, “"Hey, did you get your medication?"” If they got their medication, we say, “"Okay,"” and then we move on to, “"how are you supposed to take this medication? What will you do if you experience side effect?"” We go through this list, and included in that list is understanding the importance of staying compliant with the medication. Then, if they haven’t got their medication, we move on to the next step of “"Was this financial? Was this a problem with insurance?"” We go through this little algorithm, per se, and then if they don’t have their medication, we work on getting that done. Then, the second is a week after that. After we’ve done the first one, one week later, they have their medications. Then, we ask the follow up one week later, “"Have you experienced any side effects? How are you taking this medication? How are you remembering to take this medication? What do you do if you forget to take a dose?"” It’s usually a 12-h window, depending on what medication it is. Then, once we chart all that, we follow up based on their answers. I know that it was a hospital-wide quality improvement project. I know that they used—they basically went and looked at—did research review. I can’t think of the word. You know whatever you review all the literature, and you basically decide, “"Okay, this is working. This is not working. What do we do?"” Then, it was just determined that this QOPI—I’m sure it’s called something else everywhere else, but this was the best method out there currently to do—keep people compliant with medications.”

Ongoing surveillance

Follow-up care for patients prescribed OAAs varied widely by clinic, physician, and medication drug class. Cancer centers that did not have an oral chemotherapy program or a compliance program did not have structured surveillance plans in place. Participant 2, a pharmacist shared,

“Obviously, it depends on the drug, but it also depends on the doctor. I have some doctors that I work with that are much more careful about bringing them in more frequently and then others that, I’m not sayin’ they’re not careful. I guess it really—the words I’m looking for is conservative or not in terms of the monitoring the follow-ups. There are some that are very conservative, very wanna monitor the patients really closely. The other ones, not that they don’t, but maybe their age or experience has told them that they’re gonna—this patient’s gonna be fine or maybe doesn’t need quite as close follow-up. It depends on the patient. I would say definitely one thing that’s consistent across the board is anybody who’s getting started does need to be seen in clinic within, I would say the typical thing is somewhere between one to two or three weeks after starting the medicine. If I were to give you—one of my doctors, I always say he sees them almost every week for the first month. Then there’s one that’s like, will see them around week two or three, then in another four weeks or six weeks, and then every three months. It just depends on how they’re doing too.”

Additionally, Participant 5 shared a different interval for follow-up. She stated follow up depended on how patients adjusted to their OAA.

“Typically every medication is different. I do that initial phone call when they start. I talk to them two weeks later and then usually the doctor will see them in another two weeks and then monthly. Then they’ll go out every three months depending on how they’re doing, how their body is reacting, side effects, and they’ll do scans at three months to see how the medications are doing.”

Participant 3, a physician, noted additional characteristics that may require more frequent monitoring. For example, she mentioned comorbid conditions and experiencing side effects, especially in the aging adult. “I think it depends on the type of medication. Essentially, when patients are starting off first with these medications, I tend to see them more often. It could be every two weeks. It could be every three weeks. Typically, most patients will fall in a once-a-month kind of window. We’ll do labs and then see them and then have a visit with them to discuss side effects. Then typically, for metastatic patients, they’ll have a scan done once every three months, but then we have a visit with them again to discuss goals. They may be seen more often, just depending upon whether they’re in more fragile condition, require more closer eye, if they have preexisting comorbidities that can potentially get worse with the therapy, then we see them more often. We just adjust based on the patient, but I would say if it’s—most patients, eventually, when they’re stable, will do once a month. We don’t typically do scheduled calls to patients. Instead, like I mentioned, especially when patients are just getting started off, we encourage them to have more frequent visits with us. Particularly older patients are more fragile. We’ll tend to meet them more often after I’ve started a new therapy just to make sure that I can lay eyes on them because there’s much more value in actually doing a physical examination and sitting with them and discussing that in a more candid manner. Patients that I’m a little concerned about with their age or their frailty or their comorbidities, I will actually see them more frequently rather than just doing house calls.”

Most challenging aspects of care

Participants revealed several challenges when managing care for patients prescribed OAAs. These challenges included issues specific to ensuring adherence to the OAA regimen, the undertaking of managing patient symptoms, side effects, and toxicities along with financial barriers of insurance cost and delays associated with insurance companies.

Ensuring adherence to the OOA regimen.

Participant 6, an advanced practice nurse, shared that managing the medication, including taking the OAA at the correct time was the most difficult aspect of care in her opinion:

“Sometimes, it’s just the managing the medication. It just varies. Sometimes, it’s the schedule of the meds, the forgetfulness. An option we usually try to tell them to put their medications in a medication reminder box at times. Just try to think of different strategies. Using a calendar to help them track as well. Sometimes, it’s just that basic compliance of not forgetting, or if they get out of their routine, to help them circle back to their medication dosing regimen so that they don’t forget a dose or dose too late.”

Participant 15 added her opinion of managing the complexity of treatment. She noted the amount of pills and the frequency to be a factor.

“I would say just making sure that they—for the more complicated ones, making sure that they’re taking it properly. Some of them are easier than others. It’s just like a one pill-a-day or things like that, but probably the hardest thing to—is probably adherence or taking medication correctly. [] where they have like multiple pills or things, and they’re making sure that they’re taking the right amount of pills. I would say complexity, so whether it’s more frequently in the day versus like you have to take it like a couple hours without eating or more complicated directions than just like take it once a day.”

Symptoms, side effects, and toxicities.

Symptoms, side effects, and toxicities were also noted to be a challenging aspect of care. Many OHCP noted that age, frailty, and comorbid conditions were often accompanied by polypharmacy and influenced how older adults responded to their OAAs. These adverse effects were often drug-specific. Participant 2, a pharmacist, voiced:

“Probably some of the toxicities. I think that they’re just— many of the older adults are just much more susceptible to some of the toxicities of the drugs and tryin’ to balance the quality— maintaining their good quality of life through the end of their life with being on active cancer treatment. It varies based on the drug. Common things that could pop into my head are fatigue. And then GI issues so whether it be diarrhea or constipation.”

Echoing the fragility of older adults was Participant 13, an advanced practice nurse, who shared that ensuring patients knew how and when to contact OHCP was especially important:

“I think their level of frailty and how they know that they need to contact us if they’re having side effects of the medication, or, I guess, their understanding what to do if there’s any sort of issues or if they forget to take the medication, but mostly their frailty and their ability to get back in touch with us and let us know they’re having issues before their next appointment.”

Participant 24, a pharmacist, also noted how each individual reacted differently to treatment. In addition, she noted patients could experience unique side effects that were not reviewed or expected:

“I think it’s the side effects that we didn’t anticipate happening. Each individual’s so different. If they have an abnormal side effect and they don’t know that we didn’t really tell them about that one and even if I say if there’s anything happening that’s different, call us and they don’t call us, then it gets to be a problem.”

Financial aspect of OAAs.

Financial aspects of OAAs appeared to be the biggest concern, mostly because it delayed treatment and sometimes resulted in the need to change the treatment plan. OHCP’s shared that the cost of OAAs often caused fear among patients, who were already on a fixed income given their age and retirement status. An advanced practice nurse, Participant 17, shared, “For me, is insurance going to cover this? It’s crazy how long it takes for these patients to get their medication. To me, it’s just ridiculous. A one-month copay of five, six, ten-thousand dollars.” Participant 19, a registered nurse, expressed “The hardest part, honestly, is finance. A lot of these patients are on Medicare, and then we have to go through them and go through the whole process of getting the pre-drug, the whole process of getting them assistance. That delays them getting the medication at all for almost—sometimes, months.” Participant 8, a registered nurse, shared the following, noting how she tries to ease into the conversation of cost:

“I think it’s the funding thing. I’ll say to the patient, “I’m glad you’re sitting because I want you to hear this number from me. This drug is very expensive, but we’re going to make sure that we make it not expensive for you. If we cannot do that, we make sure that the physician is aware. Often, he will change the treatment if this is a financially toxic drug.” They’re very fearful because I would imagine they’re on—many of our patients—the majority, I should say, are on Medicare and on fixed incomes. They’re fearful ‘cause I’ll say—and they say, “Oh, we’ve got good insurance.” I say, “Yes. I have great insurance too, but hearing the word $750 a month, I could not afford that.” They’re like $750 a month?” I said, “Yes, and likely the first dispense you might hear $1500 to $1700 for the first” and they’re like, “Oh.” Then that opens up the conversation of, “But we’re gonna make sure that you don’t have to open up your wallet because obviously that’s not affordable.” That’s when I go through the financial assistance. I’ve had a patient shell out $1700 on their credit card.”

Participant 21, a registered nurse, noted how the cost of medication can impact psychological health. She also noted if the patient is unable to pay or get assistance, an alternative drug is prescribed.

“I think it’s the cost. They get completely freaking stressed out. I always say, listen—because this is the thing, before they—okay, so when the pharmacist—we run it through the insurance, and let’s say it’s $3700 a month. They have to call the patient and say, “We ran it through your insurance. It would be $3700 a month, out of pocket,” because then the pharmacist has to get an approval from the patient to submit a financial application, and most of the time, the patients have to tell them how much they make a year, and you know, that kind of stuff, so I always give them a heads up about that. I say, “Listen, this is gonna be very expensive to start. You will not pay that,” but I think that that stresses people out, because I’ll have people calling me and say, “Oh, my God, it’s $4000.” I’m like, no. There have been a handful in 11 years, a very small handful of people who, if they make too much money, they can’t get financial assistance. In that situation, we go to a different drug. Yeah, but I feel like that is the biggest—people get very nervous about that, and I get it.”

Discussion

This study aimed to explore the perceptions of OHCPs who provide care to older adults, aged 65 and older, prescribed OAAs. Results revealed that OAA education is largely multidisciplinary, which has been the recommendation in current literature.^8,11,14 However, despite long-standing national guidelines and resources, OAA education is not standardized among cancer centers and varies greatly among providers. Recently, The Association of Community Cancer Centers (ACCC), Hematology/Oncology Pharmacy Association (HOPA), National Community Oncology Dispensing Association (NCODA), and the Oncology Nursing Society (ONS) partnered to develop OAA medication sheets that include educational material specific to medication administration, drug-drug and food-drug interactions, safe handling and disposal of OAAs, and management for common side effects.²⁵ Such educational resources are a step in the right direction to providing consistent and standardized education to patients prescribed OAAs. The lack of standardization appears to be a result of provider preference, wide variation in the type of prescribed OAAs, and patient-specific differences (e.g., symptom/toxicity profiles, frailty). The rapid development of FDA-approved OAAs could also make standardized education approaches more difficult as updating education and medication sheets can become cumbersome in a fast-paced clinical environment. Barriers such as time and resources (e.g., staffing) could also impact the ability to provide consistent, standardized information and should be evaluated as these standards are implemented. Types of cancer centers (e.g., large teaching hospitals or National Cancer Institute (NCI)-designated vs. smaller, independent cancer centers) may also vary in the staffing of OHCPs and distribution of resources and therefore negatively impact standardization education practices and ongoing patient surveillance.

In addition to non-standardized education, OAA prescribing practices varied and follow-up care to monitor patient adherence, symptoms, and toxicities were not consistent.^12,23 Importantly, Bandiera et al. (2024) noted that dosing recommendations from pharmaceutical companies often must be adapted in the clinical oncology setting to account for symptoms, side effects, and toxicities, which could explain differing prescribing practices.² Additionally, it is important to note that our study focus was on care provided to older adults, aged 65 and older, who are a vulnerable population and often not well represented in clinical trials for new cancer drugs. Physicians may be more cautious in dosing for this population, thus titrations could be based on how well patients tolerate the medication. Some of our participants noted oral chemotherapy programs or oral chemotherapy compliance programs helped enhance uniformity with education and maintain ongoing surveillance of adherence and symptom tracking. This is consistent with current literature outlining multidisciplinary interventions specific to the education and monitoring of patients prescribed OAAs.^2,8,11,14 However, reiterating that barriers to oral chemotherapy programs were noted among our participants, including as a lack of resources and time. Previous studies have noted ways to improve efficiency when caring for a large number of patients prescribed OAAs. For example, Canadeo et al. (2021) utilized acuity-based monitoring structures to separate patients prescribed OAAs into two groups; those who require careful, frequent monitoring and those who are deemed stable and on maintenance dosing.¹⁴ This structure allows OHCP to prioritize time and resources for patients who need it most. Documentation, including standardized templates, is also recommended to enhance provider communication and ensure proper monitoring of patients prescribed OAAs.¹²

In our study, pharmacists and nurses tended to spend the most time educating and monitoring patients, which has been previously reported in literature.^11,12 Each OHCP appeared to have specific roles in the education and ongoing monitoring of patients prescribed OAAs. However, there was not a particular way in which vulnerable patients were flagged for follow-up. For example, many participants noted that their older adult patients were fragile and having to manage comorbid conditions. However, there were no targeted interventions for these patients. Contrarily, Canadeo et al. (2021) developed a system in the electronic medical record to help identify those patients who may need more intense monitoring and follow-up in regard to adherence or symptom and toxicity profiles.¹⁴ None of our participants mentioned an OAA nurse navigator as part of their team, which has been reported to enhance coordination of care in addition to education, counseling, and follow-up care.²⁷ Future research to impact clinical practice should focus on how older adults prescribed OAAs are identified according to their risk factors for non-adherence and potential for toxicities, such as comorbid conditions, polypharmacy, social support, cognitive status, and documented self-efficacy to self-manage cancer care in the home environment. Ucciero et al. (2024) also notes a number of factors that could also influence self-care such as medication beliefs which should be accounted for in the risk assessment that could negatively influence adherent behavior.⁴ Technology-based systems via the electronic medical record (EMR) are imperative to accomplish such risk algorithms. However, the success of such a system would require strict documentation to reflect changes to the treatment plan (diagnoses, medication changes) to ensure the EMR was up to date.

Financial impacts of OAAs were frequently noted by OHCP as one of the most difficult aspects of care due to the stress and anxiety it caused patients. These financial impacts were also noted to cause delays in cancer treatment. Similar concerns have been described in the literature.^8,17 Although concerns the older adults on fixed incomes were mentioned in our study, financial disparities based on other factors such as race or ethnicity were not noted, which in contrast to findings by Ragavan et al. (2024).²⁸

Interventions to boost OAA education, medication adherence, and ongoing surveillance have been noted to improve patient outcomes specific to adherence.² OHCP communication with patients can enhance trust, motivation, and satisfaction with information regarding their OAA medication.^29,30 Assessing health literacy and understanding of the treatment regimen, related symptoms and side effects has been linked to adherence.⁴ Importantly, doses often need to be adjusted due to adverse events and OHCPs, such as pharmacists, are well-positioned to educate patients on both anticipated adverse events and when to contact the oncology center as well as dose titrations and interruptions needed to ensure safety and allow patients to continue treatment once toxicities have subsided.^2,29,30

Technology-based interventions, developed on the basis of behavioral change theories, such as the Information-Motivation-Behavioral Skills Model,^15,31 may offer a promising way to connect OHCPs and patients. The development of mobile and web-based applications is reportedly favorable to deliver information, monitor symptoms and side effects, and track adherence.^7,32,33 Such interventions are found to be promising even among older adults aged 65 and older as their technology use continues to increase.³³ Technically-based interventions rooted in behavioral change theories coupled with identifying and flagging high-risk patients prescribed OAAs via the EMR may be at the forefront of improving safe care.

Strengths and limitations

This study is among the first to address perceptions of the oncology healthcare professionals from multiple disciplines that target older adults prescribed OAAs. However, the study is not without limitations. First, the qualitative nature of the data is not generalizable to other populations. Although the sample provided unique perspectives among the different disciplines (e.g., nursing pharmacy, medicine), participants predominantly consisted of nurses, which could have influenced the results. Physicians and pharmacists were not well represented. The sample also came from larger, teaching hospitals with NCI-designation with little representation of smaller, local cancer centers. This is important to note as resources can vary greatly between types of cancer centers. Additionally, 62.5% of the sample was White, 99% was non-Hispanic, and 95.8% female, thus diversity was lacking. Future research should target a more balanced assessment of each OHCP with more diverse backgrounds. Lastly, data collected spanned from October 2021 through February 2024. The authors acknowledge that such an extended recruitment period could have led to critical changes in clinical processes and/or new prescribed oral anticancer medications.

Conclusion

OHCPs are an essential part of facilitating the process of delivering education and managing ongoing surveillance of OAA adherence and symptoms, side effects, and toxicities. However, standard practices are not yet established in clinical practice despite existing clinical guidelines and recommendations. There could be barriers such as time restraints and staffing resources that impede standardized care. Older adults, who may experience comorbid conditions and subsequent polypharmacy are vulnerable to adverse outcomes and may require more frequent monitoring. Future research and clinical practice may benefit from technology-based interventions to enhance patient education via standardized practices, symptom and adherence management, and communication with OHCPs. If interventions contained mobile or web-based applications, patients could receive the same information to reinforce what was introduced in the oncology clinic. Additionally, the identification of high-risk patients to create algorithms to boost ongoing surveillance is recommended.

Supplementary Material

Supplemental material for this article is available online.

Data availability statement

The datasets generated during and/or analyzed during the current study are available from the corresponding author on reasonable request.