Medication self-management behaviors of adolescents and young adults with cancer.

Background

Nearly 90,000 individuals between 15 and 39 years of age, defined by the National Cancer Institute (NCI) as adolescents and young adults (AYAs), are diagnosed with cancer annually in the USA [ 1 ]. AYAs with cancer are challenged to learn strategies to cope with the medical, physical, and psychosocial aspects associated with cancer and treatment, which is often complex and lengthy. Self-management is the process by which individuals and families use knowledge, beliefs, skills, and abilities to achieve health-related outcomes [ 2 ]. For AYAs with cancer, self-management behaviors include following a treatment regimen, communicating with providers, managing cancer-related symptoms, and engaging in health-promotion [ 3 ]. AYAs with cancer are a high-risk group for ineffective self-management because their diagnosis comes during a transition to adulthood and independence when they may be new to self-managing health care, especially for a serious illness [ 4 ].

Self-management activities include managing a medication regimen, and AYAs with cancer are commonly prescribed multiple medications for cancer therapy as well as to manage cancer- and treatment-related symptoms, such as nausea and pain. Many AYAs do not take medications as prescribed to manage cancer or its complications, with medication adherence rates as low as 50% for oral chemotherapy and antibiotics [ 5 , 6 ]. Not taking medications accurately can affect AYAs’ survival and quality of life outcomes [ 5 , 7 , 8 ]. Factors associated with lower medication adherence include being in a racial or ethnic minority group, being uninsured or insured with Children’s Health Insurance Program or Medicaid, having concerns about costs, having mental distress, and not having a regular health care provider [ 9 – 11 ].

While many studies focus on adherence (taking the medication as prescribed), few studies have examined more comprehensive medication self-management behaviors. Bailey and colleagues suggest “rethinking adherence” as “medication self-management” and deconstructing the complex steps a patient must take to safely and effectively take medications [ 12 ]. These steps include (1) correctly identifying information related to the medication(s) (name, dose, frequency, purpose); (2) filling the prescription(s); (3) implementing a plan to take medication(s); (4) taking medication(s) as prescribed; (5) taking appropriate actions to prevent adverse drug events; and (6) sustaining appropriate medication-taking behaviors for the course of treatment prescribed. McGrady and colleagues described the complex multi-dimensional process that AYAs with cancer use when making decisions about their medications, citing themes related to AYAs’ goals, importance of medications, problem-solving skills, and environmental support [ 13 ].

Evidence is lacking about how AYAs with cancer manage their medications. Study aims are to (1) describe the medication self-management behaviors of AYAs with cancer and (2) examine the barriers and facilitators to AYAs’ optimal use of medications, including their self-efficacy to manage medications.

Methods

The study used a single-group, cross-sectional, mixed-methods design to collect data about the medication self-management behaviors of AYAs with cancer. The Individual and Family Self-Management Theory (IFSMT) guided the study [ 2 ]. The IFSMT is a descriptive theory with three dimensions: context, process, and outcomes. The context dimension consists of individual and family characteristics acting as risk or protective factors. The process dimension includes concepts of knowledge and beliefs, self-regulation skills, and social facilitation. The outcome dimension includes both proximal outcomes, such as engagement in self-management behaviors, and distal outcomes, such as quality of life. This study was designed to measure health literacy as a key contextual factor, self-efficacy for managing medications as a key process factor, and medication self-management behaviors as a proximal outcome.

Sample

Eligible participants were between 18 and 29 years of age and receiving chemotherapy. The study focused on a narrower age range of AYAs than that defined by the NCI (15 to 39 years) for a sample of emerging adults who are less likely to be dependent on parents yet not fully mature adults. Emerging adults, approximately 18 years through their 20s, can be legally responsible for their health care but may be at risk for poor outcomes due to transitions in living arrangements, employment, and relationships [ 14 – 16 ]. Inclusion criteria were (1) cancer diagnosis; (2) completion of at least 2 months of chemotherapy; and (3) prescription of at least 3 scheduled and/or non-scheduled medications listed on their medication record. Exclusion criteria included (1) cognitive and/or physical inability to complete study measures, (2) inability to assume some responsibility for medication self-management, and (3) primary language other than English or Spanish.

Setting

The study was conducted at two adjacent academic health systems, one adult and one pediatric, located in the midwestern United States. The institutions partner to create a collaborative infrastructure for AYA clinical and research initiatives. In the adult system, patients were approached in several Cancer Center specialty clinics. In the pediatric system, patients were approached in the hematology/oncology clinic.

Ethical considerations

The study was approved through an inter-institutional reliance agreement by the Institutional Review Board of the Medical College of Wisconsin (00035689).

Instruments

Participants completed a validated 3-question health literacy screen [ 17 ]. Items addressed difficulty understanding written information, needing assistance to read hospital materials, and confidence filling out medical forms. A response of 3 or greater (indicating “sometimes” or “somewhat,” “often,” or “always”) on any question is considered inadequate health literacy [ 17 , 18 ].

Participants completed the PROMIS Self-efficacy for Managing Medications and Treatments – Short Form 8a [ 19 , 20 ]. This validated 8-item scale assesses the person’s level of confidence to take medications without assistance, when away from home, and when schedules change. Responses are recorded on a 5-point Likert-type scale (“very confident” to “not at all confident”) and totaled for a raw score, which is then translated into a T-score. A T-score of 50 is the average self-efficacy for managing medications of the general US population with chronic conditions, and a lower score indicates lower self-efficacy.

Participants self-reported demographic information and insurance status. Clinical variables related to cancer diagnosis and treatment and a current medication list were retrieved from the medical record.

A semi-structured interview guide was created based on the medication self-management steps outlined by Bailey et al. [ 12 ] and questions about medication from the Adolescent/Young Adult Self-Management and Independence Scale (AMIS II) [ 21 ]. Questions included where medications are stored and organized, what medication reminders are used, how refills are arranged, who picks up and pays for medications, and other challenges, facilitators, and problem-solving strategies related to medication self-management.

Study procedures

A study team member identified potentially eligible AYAs in the clinical settings and assessed their interest in the study. Following informed consent, participants completed survey instruments on a computer tablet, and clinical data were extracted from the medical record. A study team member completed the in-person, audio-recorded interview. Surveys required approximately 15 min to complete, and interviews lasted between 7 and 37 min. Participants received a $25 gift card as compensation.

All data, including transcribed interviews, were stored in REDCap. Quantitative data were analyzed in SPSS using descriptive statistics to score instruments and summarize results. The Pearson correlation was used to identify an association between health literacy and self-efficacy scores. Qualitative interview data were analyzed manually using inductive content analysis procedures. Responses were organized according to question and coded for meaning when appropriate. Codes were further organized into themes by four researchers using an iterative process until agreement was reached. Themes were quantified to describe behaviors, challenges, facilitators, and problem-solving strategies related to medication self-management. An additional researcher independently coded the responses for 8 participants (average inter-rater reliability was 77.9% agreement), and discrepancies around coding were resolved to confirm themes and frequencies of responses. Exemplary quotes from participants were highlighted under selected themes. Exploratory mixed-methods analyses were used to identify relationships between demographic variables, health literacy, and self-efficacy scores with categories created from self-reported qualitative data using correlations and tests for association. For example, was self-efficacy associated with AYAs’ self-reports of independence with medications?

Results

The study was conducted between November 2020 and August 2021. Of 37 eligible AYAs who were invited to participate, 31 enrolled (83.8% enrollment rate). One participant withdrew after enrollment and before data collection due to lack of interest. Results are reported for 30 participants.

Sample characteristics, health literacy, and self-efficacy

Characteristics of the 30 AYA participants are summarized in Table 1 .

These AYAs reported an average of 5.87 (range 2–12) scheduled medications and an average of 2.77 (range 0–5) non-scheduled medications. Thirteen AYAs (43.3%) were prescribed oral chemotherapy, with 19 different chemotherapy or immunotherapy agents prescribed. Table 2 lists medication categories and frequencies prescribed for participants. Over 250 different medications were prescribed for this group of 30 AYAs.

Nineteen of 30 participants (63.3%) had limited health literacy as measured by three screening questions. On question one, nine (30%) responded they had someone help them read hospital materials some of the time, six (20%) needed help most of the time, and two (6.7%) needed help all the time. On question two, only one AYA responded they sometimes had problems learning about their medical condition due to difficulty reading written information. On question three, six AYAs (20%) reported they were only sometimes confident filling out forms by themselves.

The average T-score on the PROMIS Self-efficacy for Medication Management was 46.72 (SD 6.21, range 37.47–60.74), indicating self-efficacy approximately the same as a reference adult US population group with chronic conditions. Two items where AYAs reported the lowest confidence scores were “I can list my medications, including doses and schedule” (mean = 3.53/5, or “somewhat confident”) and “I can figure out what treatment I need when my symptoms change” (mean = 3.48/5, or “somewhat confident”). On the first item, 16 AYAs (53.3%) responded they were “always” or “quite confident” they could list their medications. On the second item, 20 (66.7%) were “always” or “quite confident to figure out how to manage changing symptoms.”

AYAs’ health literacy was examined for an association with self-efficacy for medication management. Total health literacy scores negatively correlated with self-efficacy for medication management scores, indicating AYAs with greater health literacy were more confident managing medications ( r (28) = − 0.71, p < 0.01).

Medication self-management behaviors

AYAs’ medication self-management behaviors are described below. Table 3 includes example quotes from participants that illustrate specific behaviors.

Correctly identify medications

Ten AYAs (33.3%) correctly stated the purposes of each of their medications. While the rest knew most of the reasons medications were prescribed, four AYAs (13.3%) did not know the purpose for at least half of their medications. Half of the AYAs (15, 50%) identified the correct frequency for each of their medications.

Obtain medications

Several questions related to how AYAs maintain an adequate medication supply. Approximately half (16, 53.3%) reported they independently checked their medication supply, while the remainder did so with assistance (10, 33.3%) or depended on another person (4, 13.3%). Most AYAs (24, 80%) independently arranged for refills and reorders of their medications, while the remainder said they depended on another person. AYAs used a number of different approaches to keep an adequate medication supply, such as calling the pharmacy, talking with providers at clinic visits, and using apps (e.g., MyChart) to message providers.

In contrast, more AYAs depended on someone else or needed assistance to pick up (22, or 73.3%) and pay for (17, or 56.7%) their medications. AYAs usually named a parent as this support person. They obtained medications from a variety of and often multiple locations, including the hospital or local pharmacy and through mail order. They described various combinations of insurance coverage for medications, using private insurance, often under their parents, and public insurance. Eleven AYAs (37%) reported that insurance covered the entire costs of medications, whereas other AYAs reported they had various co-pays, ranging from $1 to $15, which they paid themselves or their parents paid for them. Approximately one-third (9, 30%) did not know if and/or which medications were covered by insurance or if they had a co-pay (10, 33.3%).

Implement a plan to take medications

Several questions focused on how AYAs stored, organized, and remembered to take their medications. These AYAs stored medications in a variety of locations. Twelve AYAs (40%) kept all medications together in one location, while ten AYAs (33.3%) kept medications in multiple locations. Seven AYAs (23.3%) did not mention any organizational method when storing medications, 13 (43.3%) described organizing medications according to time and administration schedule, and seven (23.3%) organized according to the purpose of the medication. For example, chemotherapy medications were stored in one place and over-the-counter medications were stored in another. Eight (26.7%) AYAs mentioned using a pill box, whereas others kept medications in their original bottles (9, 30%).

AYAs used a variety of reminders to take medications as prescribed. Twelve (40%) described using visual or time triggers, such as at mealtime or bedtime. Others reported they used alarms (12, 40%), calendars (2, 6.7%), and pill tracker apps (1, 3.3%). Most AYAs (23, 76.7%) reported they independently remembered to take their medications but that someone else also checked to be sure they remembered, usually a parent and especially for important medications, such as chemotherapy. If away from home, most AYAs stated they bring their medications with them (21, 70%), although this study was conducted during the COVID-19 pandemic when travel was limited.

Take medications as prescribed

Nearly all (27 or 90%) of AYAs reported they “always” or “almost always” take medications as prescribed.

Two (6%) reported they “sometimes” take medications as prescribed or “it depends.” One AYA reported they “never” took medications as prescribed.

When asked how they decided to take an unscheduled medication “as needed,” fourteen (46.7%) AYAs responded that they take the medication as soon as the symptom occurs, while five (16.7%) mentioned they waited to see if the symptom persisted or worsened before they took medication. Seven (23.3%) mentioned they took medication to try and prevent a symptom. Six (20%) described a process of trial and error when deciding to use a medication “as needed.”

Manage side effects of medications

AYAs described numerous medication side effects and multiple strategies used to manage these adverse effects. They noted bothersome steroid side effects, such as feeling jittery and hungry, body swelling, weight gain, and difficulty concentrating. To manage these symptoms, they adjusted their diet and activities. They noted various side effects from the prescribed antiemetics, such as headache and constipation from ondansetron and feeling tired from prochlorperazine. They described adjusting the antiemetic dose and/or trying an alternative antiemetic for optimal relief and comfort. Other common side effects that were mentioned included the bad taste of many medications, difficulty swallowing pills, rashes, constipation and diarrhea, and pain from subcutaneous injections.

Barriers and facilitators to medication self-management

Challenges for AYAs to manage their medications fell into several categories. Some AYAs did not want to take medications, were not used to taking medications, and just wanted to be normal (4, 13.3%). One AYA noted, “Just sometimes I don’t want to take them. Sometimes I kind of wish things were normal.” (ID2) Others responded that it was challenging to remember to take medications, especially with so many prescribed and when the schedule or dose was changed (8, 26.7%). “I try a schedule, I guess. But then they have been adding so many new things.” (ID17) Some noted that medication side effects were problematic (5,16.7%). The medication schedule and having to organize the medication regimen was challenging for some (9, 30%). “Once a week pills – those I always find more challenging to remember,” shared one participant (ID26).

When asked about specific problem-solving strategies, AYAs mentioned relying on others (3, 10%) and using reminders and organizers (17, 57.6%). One AYA shared, “I use the pill tracking app…Then also, my dad is a double-checker…” (ID20) Some participants (8, 26.6%) mentioned using food and drink strategies to help with taste and swallowing problems. “I used to not be able to take pills. We used to grind them up and put them in different foods.” (ID22) Some AYAs used cognitive strategies, such as telling themselves taking medications is something they need to do to get better (4, 13.3%).

No significant associations were found between demographic variables, including age, race, sex, and marital status, and self-efficacy for managing medications, health literacy, or any of the self-reported medication self-management behaviors. There were also no associations between the number of medications prescribed and any self-management behaviors. AYAs’ self-efficacy for medication management was positively associated with their ability to correctly identify their medications ( r (28) = 0.38, p = 0.038). AYAs’ self-efficacy and health literacy were associated with their self-report of independence in monitoring the need for a refill ( r (28) = − 0.427, p = 0.05, r (28) = 0.488, p = 0.01, respectively) and in picking up their medications ( r (28) = − 0.554, p = 0.01, r (28) = 0.594, p = 0.01, respectively).

Discussion

In this study, AYAs managed an average of nine prescriptions for scheduled and non-scheduled medications. Although polypharmacy is mainly studied in older adults, increased use of oral chemotherapy and other supportive care medications make AYAs vulnerable for the burdens and risks associated with taking multiple medications [ 22 ]. Most AYAs self-reported they took their medications as prescribed, and they used a variety of resources to store, organize, and remember to take medications. AYAs demonstrated planning, reflection, involving a support person, and decision-making, which are all key constructs for successful self-management. Although several demographic variables have been associated with adherence in previous research with AYAs [ 7 ], no such associations were found in this study.

AYAs were mostly confident about taking medication, but many lacked knowledge about the purpose and schedule of their medications. They voiced less certainty about how to use unscheduled medications for symptom management. Self-efficacy is the individual’s belief that they can successfully achieve a goal [ 23 ], and self-efficacy for disease management in AYAs with cancer is positively associated with better health outcomes [ 24 ]. Self-efficacy alone may not explain medication adherence, but self-efficacy combined with knowledge may improve outcomes [ 25 ]. Many AYAs in this sample were screened to have limited health literacy, which was associated with lower confidence managing medications, and may explain some lack of knowledge. Health literacy is defined as the degree to which individuals have the capacity to obtain, process, and understand health information to make health decisions [ 26 ]. Health literacy has been associated with medication adherence, but this relationship needs further exploration, especially for younger patients with cancer [ 27 ]. In our exploratory analyses, higher self-efficacy was associated with accurate medication knowledge and more independence with medication management.

Although AYAs may be independent in instrumental activities of daily living, many AYAs in this sample were fully or partially dependent on someone else, usually a parent, to obtain, pay for, and remember to take medications as prescribed. This finding supports evidence that family functioning and assistance are important contextual factors related to optimal medication self-management among AYAs [ 28 ].

AYAs named a variety of physical and mental barriers to taking medications. Some AYAs discussed not wanting to take medications because they just want to be “normal,” which speaks to the emotional aspects of medication self-management. Recent research endorsed different patterns of barriers to taking medications among AYAs and concluded a personalized approach is needed to address various age-specific barriers [ 29 ].

Limitations

This study had a small convenience sample of mostly White, non-Hispanic AYAs, which limits generalizability of results. The heterogeneous sample gives a broad snapshot of medication behaviors among AYAs with cancer rather than a focused look at any particular diagnostic group or a specific time since diagnosis. No data were collected on education or living arrangements, which are relevant factors when studying self-management. Finally, all behaviors were self-reported by participants and not confirmed with any objective measures of how and whether AYAs actually took their medications. Further research exploring which specific medication self-management strategies lead to better medication adherence that is objectively measured would provide guidance for interventions to support AYAs with cancer when learning self-management skills.

Clinical implications

Providers need to ensure that AYAs with cancer have a reliable support person to assist with complex medication regimens, especially for AYAs who do not live with or have a close relationship with a parent or caregiver. Because AYAs may be novices when dealing with the health care system and understanding medical forms and cancer-related finances, they likely need extra time and attention from providers to help them navigate these issues. AYAs are a group at risk for being uninsured and underinsured, and AYAs may need referrals to social work and financial services to help them avoid financial hardships that become a reality for many with cancer who are unable to work or rely on family. Finally, providers need to explore what strategies AYAs use to effectively self-manage their medication regimens, especially for critical medications, and help them to problem-solve when doses, schedules, and symptoms change. Providers should ensure that AYAs can describe a medication self-management plan that works effectively for them and offer medication-taking tips suggested by other AYAs.

Conclusions

Effective self-management of medication regimens requires AYAs with cancer to have knowledge and self-management skills, including self-monitoring, decision-making, problem-solving, and collaboration with providers. AYAs often need a support person for instrumental, financial, and informational assistance related to managing often complex medication regimens. Providers should ensure that AYAs have adequate health literacy, knowledge about their medications, and adequate self-management skills to be confident about taking medications as prescribed.

Author contribution

J. E. and K. B. conceptualized and designed the study.

J. E. and K. B. and J. C. were responsible for the overall conduct of the study.

J. E. and K. B. led data analysis and wrote the main manuscript text.

A. K. J. and I. J. L. and A. P. T and A. G. participated in data collection and/or analysis.

M. E. participated in data analysis and preparation of tables.

All authors reviewed the manuscript.

Funding

This work was supported by the Children’s Research Institute, Children’s of Wisconsin, Milwaukee, WI.

Data Availability

Data that support the findings of this study are available from the authors upon reasonable request.

Declarations

Ethics approval

This study was performed in line with the principles of the Declaration of Helsinki. Approval was granted by the Institutional Review Board of the Medical College of Wisconsin (6/12/2020, No. 00035689).

Competing Interests

The authors declare no competing interests.

Footnotes

Publisher's note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

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Associated Data

Data Availability Statement

Data that support the findings of this study are available from the authors upon reasonable request.