Physical Function and Mobility in Older Adults Receiving Treatment for Acute Myeloid Leukemia: A Longitudinal Qualitative Study

Abstract

PURPOSE

To explore perspectives of older adults (aged 60 years or older) with acute myeloid leukemia (AML) on their physical function and mobility, assessed at three time points during treatment with a hypomethylating agent and venetoclax (HMA + VEN).

PARTICIPANTS & SETTING

Participants were older adults with AML (N = 17) receiving HMA + VEN at a comprehensive cancer center. Most were male and aged 64–89 years (median age = 75 years).

METHODOLOGIC APPROACH

This study used a longitudinal qualitative approach with semistructured interviews at cycles 1, 2, and 7 of chemotherapy. Interviews were audio recorded, transcribed, coded, and analyzed using thematic analysis.

FINDINGS

Four themes were identified: reduced mobility and limited options for physical activities (cycle 1), periodic changes in mobility and energy level (cycle 2), acceptance and adaptation to changed mobility (cycle 7), and strategies to stay active.

IMPLICATIONS FOR NURSING

Substantial challenges with physical function and mobility exist for older adults undergoing treatment for AML. Oncology nurses should anticipate patient needs, provide appropriate care, and make referrals to address physical and functional needs before and during HMA + VEN treatment.

Acute myeloid leukemia (AML) is a hematologic cancer frequently experienced by older adults, with diagnosis occurring at a median age of 69 years (American Cancer Society, 2025). AML is characterized by an aggressive disease trajectory and fluctuating symptoms resulting from the cancer itself and its treatments (Albrecht, 2014; Leak Bryant et al., 2015). Historically, treatment regimens for adults with AML have involved high-intensity chemotherapy followed by stem cell transplantation. Patients unable to undergo intensive treatments have received lower-intensity chemotherapy or supportive care (Döhner et al., 2017). Most older adults are not eligible for high-intensity treatment regimens because of the high risk of complications and poor prognosis (Estey, 2018). In 2018, the U.S. Food and Drug Administration approved the combination of hypomethylating agents (e.g., azacitidine, decitabine) and venetoclax (HMA + VEN) for adults with AML aged 60 years or older. Treatment with HMA + VEN improved survival and increased remission rates from 20% to more than 70% (DiNardo et al., 2019; Neuendorff et al., 2023). HMA + VEN treatment is increasingly used for older adults with AML and is frequently administered in the outpatient setting because of lower toxicity and improved prognosis (Leak Bryant & Buhlinger, 2022). Older adults with AML receive HMA + VEN for a minimum of two 30-day cycles. If they respond, treatment continues indefinitely until the disease relapses.

Despite treatment advances with HMA + VEN, patients may still experience significant impacts to their physical function and mobility, potentially decreasing their quality of life (QOL). Comorbid conditions can affect functioning in daily life, potentially complicating treatment (Laribi et al., 2021; Scheepers et al., 2020; Tan et al., 2023). Side effects of HMA + VEN include fatigue (46%–98%), gastrointestinal symptoms (nausea and constipation), and aches and pains, all of which can affect a patient’s mobility (AlFayyad et al., 2020; Alibhai et al., 2007; Leak Bryant et al., 2017). Physical function and mobility are important in the daily lives of people with AML and have a strong correlation with QOL (Alibhai et al., 2015; Klepin et al., 2016). The World Health Organization (WHO, 2013) defines QOL as a person’s understanding of their position in life in connection with their goals, expectations, standards, and concerns, and physical health is one of the standard indicators of QOL. Changes to physical function, mobility, and QOL have been reported for people with AML receiving high-intensity chemotherapy, stem cell transplantation, and low-intensity chemotherapy (Alibhai et al., 2015; Buckley et al., 2018; Deckert et al., 2018; Tomaszewski et al., 2016). Compared to other low-intensity treatments, clinical trials with HMA + VEN have demonstrated the potential for longer survival without fatigue, which may have improved effects on mobility and better preservation of QOL (Pratz et al., 2022). Although more older adults with AML are receiving novel treatments like HMA + VEN, there is a lack of studies looking at physical function, mobility, and QOL in older adults with AML receiving these types of treatments. It is important to understand the impact over time to the activities and QOL of older adults receiving AML treatments like HMA + VEN from their perspectives. This study aimed to explore the perspectives of adults aged 60 years or older with AML on their physical function and mobility changes across treatment cycles with HMA + VEN.

Methods

Design

A longitudinal qualitative study design (Calman et al., 2013; Grossoehme & Lipstein, 2016) was used to describe the perspectives of older adults with AML about the effects of the HMA + VEN treatment on their physical function and mobility over time. The current study used interview data collected as part of the Palliative and Supportive Care Intervention (PACT) pilot study (NCT04570709). Qualitative interviews were conducted within seven days of the end of HMA infusion at cycles 1, 2, and 7 (or at the end of the study if a participant’s treatment regimen changed between cycles 3 and 6). Because of the importance of time and timing in longitudinal qualitative research, these three time points were selected to assess transitions in symptoms, function, and QOL. This study was approved by the the University of North Carolina at Chapel Hill Institutional Review Board (IRB 18-3244).

Participants and Setting

The PACT study was conducted at University of North Carolina Lineberger Comprehensive Cancer Center in Chapel Hill. A purposive sample of adults aged 60 years or older with AML receiving HMA + VEN treatment was recruited from September 2020 to September 2021 as part of a control group of the PACT study. These participants were identified via electronic health records and referrals by nurse navigators and clinical pharmacists. Exclusion criteria were receiving hospice care or being deemed unable to participate by their oncology provider. Informed consent was obtained before starting any study activities.

Data Collection

Semistructured interviews were conducted by two trained oncology nurse researchers (Y.-N.C., A.L.B.) at cycles 1, 2, and 7 (or end of study). Interviews were conducted during a treatment visit, in person in a private room at the cancer center or via telephone. Interviews followed a qualitative descriptive approach (Sandelowski, 2000), asking participants questions using “what” and “how” words to describe the following: (a) physical function and mobility changes before and after diagnosis, as well as across treatment cycles; (b) what will help them stay active; (c) symptoms; (d) challenges; and (e) experiences at home. In interviews during cycle 1, participants were asked to describe their physical function and mobility before diagnosis (baseline) and after diagnosis (cycle 1). Data saturation was considered reached when no new themes emerged and when the study team determined that the findings were well described.

Data Analysis

All interviews were audio recorded and transcribed verbatim. Transcripts were deidentified and uploaded to Dedoose, version 9.0.86, for data management and coding. Thematic analysis (Braun & Clarke, 2006) was conducted to identify themes describing perceptions of the impact of treatment on physical function and mobility. One researcher (A.J.) developed a codebook based on a selection of interview transcripts, which was piloted and refined on one transcript by five coders (A.J., V.C., K.R.T., E.H.P., A.O.B.). The codebook was enhanced by including constructs from the WHOQOL framework (WHO, 2013). This framework was used to guide the analysis because of the importance of mobility to QOL for older adults with AML and because of its holistic approach to understanding QOL. The WHOQOL framework consists of six domains (physical, psychological, level of independence, social relations, environment, and spirituality/religion/beliefs). The constructs in these domains were used as codes in the analysis.

Interview text was analyzed cross-sectionally (i.e., at each time point, data from all participants were analyzed together as a group) and longitudinally (i.e., data from each participant were analyzed across time points) (Calman et al., 2013; Grossoehme & Lipstein, 2016). Six researchers (V.C., D.K., K.R.T., E.H.P., A.O.B., D.S.A.) coded 13 transcripts in pairs and the remaining 28 transcripts individually. Discrepancies and questions were resolved in regular meetings with all coders. Key patterns in the coded passages were explored among four researchers (A.J., V.C., D.K., K.R.T.) and sorted into themes relevant to the study aims. Themes were created by condensing codes into larger categories based on similarities and using an iterative process going between codes and themes (Braun & Clarke, 2006). Themes and exemplary quotations were organized, discussed, and refined among this same group of four researchers and finalized by the first author. Methodologic rigor was maintained by triangulating multiple investigators during data analysis and ensuring that researchers had clinical expertise in AML (Lincoln & Guba, 1985). Confirmability was enhanced by maintaining an audit trail of analytic material and using illustrative passages from transcripts as supporting evidence (Lincoln & Guba, 1985).

Findings

Overall, 17 patients completed initial interviews (cycle 1), 14 completed second interviews (cycle 2), and 10 completed third interviews (n = 5 at the end of the study between cycles 3 and 6; n = 5 at cycle 7). Demographic characteristics are presented in Table 1. Of the 17 participants, most were male (n = 15) and non-Hispanic White (n = 15), with a mean age of 75.2 years (SD = 8, range = 64–89). About one-fourth of the participants lived more than 50 miles from the cancer center (n = 4). Figure 1 depicts the themes and subthemes that were identified during this study. Quotations in Figure 2 illustrate how mobility and physical function changed across treatment cycles. The following four themes were identified: reduced mobility and limited options for physical activities (cycle 1), periodic changes in mobility and energy level (cycle 2), acceptance and adaptation to changed mobility (cycle 7), and strategies to stay active.

TABLE 1.

Sample Characteristics (N = 17)

Characteristic	X̄	SD	Range
Age (years)	75.2	8	64–89
Characteristic			n
Gender
Male			15
Female			2
Race and ethnicity
Asian			1
Black or African American			1
Non-Hispanic White			15
Education level
High school graduate or equivalent			9
College degree			2
Advanced degree			5
Prefer not to answer			1
Annual household income ($)
Less than 20,000			1
20,000–40,000			2
40,001–60,000			3
60,001–80,000			3
More than 100,000			6
Prefer not to answer			2
Marital status
Married or partnered			13
Widowed			3
Divorced			1
Living with others
Yes			12
No			5
Employment prior to treatment
No			10
Yes			7
Distance from cancer center (miles)
50 or fewer			12
More than 50			4
Unknown			1
Chemotherapy regimen
Venetoclax + azacitidine			15
Venetoclax + decitabine			2
Cytogenetics
Adverse risk			11
Intermediate risk			5
Unable to determine			1
Comorbidities
Cardiac disease			7
Arthritis			4
Other cancer			4
Diabetes			2
Lung disease			2
Mental illness			2

FIGURE 1.

Themes and Subthemes

FIGURE 2.

Changes in Mobility and Physical Function Over Treatment Cycles

Cycle 1: Reduced Mobility and Limited Options for Physical Activities

Most participants described good mobility and energy levels before their AML diagnosis and that they could do anything they needed to do independently. However, after starting AML treatment, participants reported decreased mobility and limited physical activity options. These changes in mobility and activity often provoked various emotional and situational responses, including feeling disconnected, frustrated, and dependent on others.

Feeling disconnected from the body’s ability to function

Participants felt disconnected from their body’s ability to function, particularly when in the hospital for the first several days (patients need to stay inpatient or travel daily for outpatient infusion for the first five to seven days of their treatment cycle), because their options for physical activities were limited. They had neither the desire to do things nor the energy to engage in activities. One participant said, “I had no desire to do anything but lay in bed, and it just took me forever to get over those things” (participant 1007).

Frustration with not moving as desired

Feeling disconnected from their ability to function led to frustration for participants. One participant said, “I can’t do probably one-quarter of what I used to be able to do. It’s frustrating at times, but I do what I can do” (participant 1010). They were frustrated with not moving and functioning how they used to or would like to do. For some, the frustration was expressed as upsetting, a depressed feeling, or a loss of happiness. A participant described this feeling, stating, “It’s just a difficult change. It’s gone from [being] a very active person now to I don’t even know what word describes it. It’s just, you lose all sense of happiness, I guess” (participant 1009).

Dependence on others

Although many participants described that they were able to do basic activities of daily living independently, the reduced and limited mobility made some rely on others to assist with a range of activities, from basic activities of daily living to driving. One participant stated the following:

There are days where I sit and think about what I used to be able to do, and what I’m capable of doing now, and it’s a little bit depressing because I enjoy those things and now I can’t really do them. So, I have to rely on somebody else to help me out with things that were so simple for me to do before. (participant 1010)

Cycle 2: Periodic Changes in Mobility and Energy Level

After cycle 1 infusion and before starting cycle 2, participants reported that their mobility and energy level had gradually increased. During cycle 2, participants’ responses were mixed; some had improved mobility and felt better than in their first cycle, but others had physical symptoms, fatigue, and decreased mobility. Responses differed, particularly on which day of the cycle they were and/or whether they had any preexisting or comorbid physical conditions, as expressed in the following statements from participants:

I was able to do a few things, not the week of the cycle, and not that it was the week after the first cycle, but the second and third week, I was out and doing a few things here and there, so it wasn’t too bad. (participant 1010)

I think that I’m having more difficulty on the second cycle because apparently the red blood cells and the hemoglobin level is perhaps lower than it was during the first cycle, but I’m having more trouble with the second cycle treatment than the first. Actually, the problem lies in, I have to sit down frequently. I can’t do any exercise without getting tired and worn out. (participant 1002)

New conceptualization of mobility

Many participants described mobility as being able to do things and complete tasks and activities well. They also expressed contentment about what they could do although they had limitations in their activities compared to before diagnosis. One participant said, “Just tiredness, fatigue a little bit . . . it’s really not that bad. I can get out, drive my car, go to the ATM, go get gas, and [things] like that.” (participant 1008)

Knowing what to expect

From cycle 2 of treatment, participants started to feel more comfortable with treatment and changes in mobility and physical function because they knew what to expect. One participant stated the following:

I think my emotion was a little higher than my first treatment when I was on my second treatment. I think I went down some, but otherwise, my wife, she beats me up. You got to keep going. But it’s a whole lot easier the second time than it was the first time because I know what to expect. (participant 1014)

Cycle 7: Acceptance and Adaptation to Changed Mobility

As treatment cycles continued, participants felt that treatment was part of their routine and made it work into their schedule. One participant described it as follows:

It [the seventh cycle of treatment] is better than the sixth, better than the fifth, better than the fourth. It seems like it’s part of our routine and we go over there. At cycle 1, I didn’t know what was going on. It was confusing and at times the anticipation of things I didn’t understand. So now, it’s fairly routine. It’s worked into our schedule and such. (participant 1003)

Participants showed acceptance of and adaptation to their change in mobility with the treatment, which manifested in the subthemes of maintaining independence and slowing down activities.

Maintaining independence

After six cycles of treatment, most participants described having few or no restrictions to their mobility, maintaining their independence, and engaging in activities like driving, walking, and yard work. Although they had some limitations with mobility because of AML or comorbid conditions, they accepted the limitations and continued regular activities. Participants described this as follows:

I drive myself. I go. I take a walk almost every day at the park. And so far I do it, OK. . . . Everything is restricted now because I am immunosuppressed. So, I cannot deal with things that I want to do before I got the disease. I can no longer do my gardening and all these. So, it limited my activities before, and I accepted this and [am] OK with it. (participant 1001)

I am independent, except when I want to take a long walk. I use my walker as an aid to help me take a long walk. . . . [I can take] care of my personal needs, showering, everything that needs to be taken care of around the house. (participant 1006)

Slowing down activities

Participants gradually accepted and adjusted their current situation and mobility changes over time. They tried to continue activities and maintain independence but slowed down their activities to adapt to their changed mobility and energy level. Participants described this as follows:

I don’t do anything strenuous enough that would impact my day-to-day well-being. So, I probably slowed down a little bit, but again, I’m not a 40-year-old person where it’d be very obvious. I feel like that I’m slowing down anyway. (participant 1003)

I have no limitation [on mobility], except I’m lazier than I used to be. But then that’s the way of the world when you’re 87 and have acute leukemia. I sleep more, but I don’t have any great limitations. (participant 1016)

Strategies to Stay Active

Across all the cycles of treatment, participants who experienced changes in mobility found their own strategies to stay active over time.

Knowing energy level and adjusting activities

As participants underwent treatments, they experienced fatigue and loss of muscle mass, which affected their activities. Participants assessed their energy levels and adjusted their range of activities as necessary to stay active. They would rest and sometimes sleep between activities or reduce their number of activities. One participant gave the following example:

Just walking back here [clinic room], I couldn’t make it all the way back here. I had to sit down in a chair, and she pushed me, and then for a few minutes after I come in here and sit down, I’m just [makes heavy breathing noise]. (participant 1013)

In addition, participants described being more active before their next cycle and having regular activities help them to stay active during the cycle. One participant described this as follows:

If you stay active before you go into the cycle, it’s a little easier to stay active while you’re in it. You won’t be as active, but you’ll still be active, and every little bit helps. There were days like yesterday, I had all I could do to get there yesterday, but there were other days that you saw me, and I was fine. (participant 1010)

Social support

Participants acknowledged the role of their support network in being able to stay active. Support included encouraging words to remain active and practical help from family, friends, and the care team. For example, one participant’s family planned and encouraged activities to successfully keep them active. One participant stated, “I have a good support system. I have my wife there and I have children around, and they’re not going to let me just sit around” (participant 1017).

Internal motivation and positive outlook

Participants described internal motivation to achieve tangible tasks and activities. Many of these had social aspects or were tasks related to household chores like activities with grandchildren or hanging Christmas decorations with a spouse. One participant described the following:

It’s my own desire to get things done is what’s going to help me get things done. Right now, we’re thinking about getting the house decorated for Christmas, so that will definitely be an activity that will keep us both going, and then we’ll try to kill the mice in our house, too. (participant 1007)

For some, the motivation to return to meaningful routines and activities from before diagnosis helped them continue to stay active. In addition, participants found that keeping a positive mindset during initial diagnosis and subsequent treatments was a motivator for maintaining physical activity. One participant said, “We just want to get back to our previous life. So, we have a lot of initiative to return. We’re both optimistic about everything. We’re not just going to lay there and mope around in bed” (participant 1003).

Discussion

This longitudinal qualitative study is a subset of the PACT study, which was a pilot test of a collaborative interprofessional team care intervention for older adults with AML and their care partners to manage symptoms and improve function. The collaborative interprofessional team in the PACT study consisted of RNs, physical therapists, and occupational therapists. RNs monitored and guided self-management of symptoms and oral medication adherence, physical therapists addressed movement for walking and other forms of mobility, and occupational therapists optimized function for participation in activities of daily living. The key feature of the PACT intervention was the collaborative nature of team members’ interactions across disciplines and care settings. The participants in the current longitudinal qualitative study were part of the control group in the PACT study, and they did not receive the collaborative interprofessional team care intervention.

This longitudinal qualitative study examined mobility and activity changes in older adults with AML who received HMA + VEN treatment in the hospital and clinic. The following four themes were identified: for cycle 1, reduced mobility and limited options for physical activities; for cycle 2, periodic changes in mobility and energy level; for cycle 7, acceptance and adaptation to changed mobility; and across cycles, strategies to stay active. Remaining active and mobile during treatment was important to participants, and it required adaptations to changing mobility and daily activities over time.

Participants experienced decreased mobility and reduced activities of daily living during their first cycle of treatment because of the impact of AML treatment. Participants described how reduced mobility and activities affected their QOL, particularly related to mood or emotion (e.g., frustration, upset feeling, depressive feeling, loss of happiness) and physical functioning. These findings are similar to those from other AML studies that showed activity, function, and mobility deficits commonly affected overall well-being and QOL (Deckert et al., 2018; Laribi et al., 2021; Tomaszewski et al., 2016). Although participants in the current study experienced improved mobility as treatment cycles continued, most participants reported some limitations with mobility and function and had not returned to their previous activity levels before AML diagnosis. Regardless of treatment intensity, older adults with AML may require additional support to optimize activity, mobility, and function during treatment cycles. Using psychological resources (e.g., counseling, support groups) would also benefit older adults with AML because changes in mobility and activity frequently affect mood and emotions.

Limitations to participants’ activity were fatigue and low energy resulting from AML and HMA + VEN treatment. Interventions aimed at managing fatigue and optimizing energy allocation could address these concerns. Previous physical activity and exercise interventions for AML have resulted in minimal clinically important or statistically significant reduction in fatigue or anxiety or improvement in QOL (Alibhai et al., 2012; Baumann et al., 2011; Jarden et al., 2013; Klepin et al., 2011; Loh et al., 2022; Persoon et al., 2013; Wood et al., 2016). In addition, adults with AML have attributed increased mobility and exercise to better coping with anxiety during treatment, maintaining cherished activities like spending time with family, and decreasing physical symptoms and pain (Deckert et al., 2018; Leak Bryant et al., 2017). However, these previous studies primarily looked at older adults with AML undergoing intensive induction treatment with prolonged hospitalizations. The current study was focused on a specific HMA + VEN treatment for older adults with AML. Future activity and exercise studies that include rehabilitation services to maintain or improve functional ability, mobility, and QOL could be a critical step forward because these have been recommended for patients receiving cancer treatments.

The current study had unique inferences in which a substantial amount of support from clinicians and social networks (e.g., family, friends) was essential for older adults with AML to remain active. Participants’ internal motivation to complete tangible tasks or household chores and to return to their previous life helped them stay active. Engaging family and care partners may help to address activity, function, and mobility deficits, improving the overall experience for the patient and care partners. In addition, patients may require a collaborative team approach with occupational and physical therapists to help manage fatigue and mobility in the home.

There were several strengths of the current study. First, it adds to the previous understanding of physical function and mobility in adults with AML by highlighting periods of limited mobility and strategies to stay active. Second, this study showed a trend in patients’ experiences at different cycles of AML treatment. Serial longitudinal qualitative interviews at cycles 1, 2, and 7 were used to understand variations in physical function, mobility, and activity changes from baseline. Third, about one-fourth of the participants lived more than 50 miles from the cancer center, representing the breadth of geographic diversity of rural counties in North Carolina (i.e., 80 of 100 counties are rural).

Limitations

Several limitations must be noted. First, the sample was homogeneous, with 15 of 17 participants identifying as White and 15 of 17 identifying as male. This greatly limited the diversity of perspectives on the impact of HMA + VEN treatment. Future studies with diverse samples are warranted to explore potential differences in lived experiences. Second, although data were collected from 17 patients at cycle 1 and 14 patients at cycle 2, only 5 patients’ experiences from cycle 1 through cycle 7 of HMA + VEN treatment were collected. Of the 14 patients who completed cycle 2 interviews, 5 had cycle 7 interviews, 5 had end-of-study interviews between cycle 3 and cycle 6 because of treatment regimen changes, and 4 were lost to follow-up. The cycle 7 interview responses were limited to the five patients who completed treatment cycle 7, and more patients may have elicited additional themes. For future studies, interviewing more patients in later treatment cycles (cycle 7 or later) could offer additional experiences and perspectives on their mobility changes.

Implications for Nursing

These findings have implications for nursing practice and research. The HMA + VEN regimen has high rates of complete remission and improved survival (DiNardo et al., 2019; Winters et al., 2019), requiring continuous support for older adults with AML. Because HMA + VEN treatments are being increasingly administered in the ambulatory setting, nurses need to be familiar with the management of potential adverse effects to educate patients and families. Oncology nurses are integral in providing palliative care and supporting patients’ daily activities and mobility. This study explored concerns and challenges experienced by patients to guide care toward optimal functional outcomes. The functional and mobility concerns highlighted the need for a collaborative interprofessional team and interventions involving nursing, physical therapy, and occupational therapy, as well as the inclusion of care partners alongside the healthcare team. When considering other known impacts of AML and treatment, such as care partner burden and socioemotional challenges, a robust team with social work and care management is essential for treating older adults with AML. Nurse-led and team-based approaches and interventions can improve cancer-related symptoms, function, activity, and QOL. Including older adults with AML and their care partners in future oncology nursing research can provide deeper insights into how interventions work in real-world settings. Because of the complexity of AML treatment, longitudinal qualitative research that captures dynamic changes over time could also provide valuable insights into intervention effectiveness.

Conclusion

Older adults with AML receiving HMA + VEN experience challenges related to their daily activities and mobility during their treatment. Overall, this study demonstrates that older adults with AML experienced reduced activities and mobility and that their strategies to increase mobility and activities were motivated by their own desire and social support. These findings highlight the need for patient- and family-centered interprofessional interventions to address mobility and functional needs of older adults with AML to improve their QOL.

KNOWLEDGE TRANSLATION.

• ■ Older adults with acute myeloid leukemia (AML) face challenges with physical function and mobility during treatment.

• ■ Family and clinical support are needed for older adults with AML to improve their activity, mobility, and function.

• ■ A team-based approach may be one strategy to address physical, psychological, and functional needs of older adults with AML, ultimately improving their quality of life.

Funding Statement

This research was funded, in part, by a National Institutes of Health National Institute of Nursing Research grant (R34NR019131; principal investigator: Leak Bryant) and a University of North Carolina Lineberger Comprehensive Cancer Center Research Development grant (P30CA016086; principal investigator: Leak Bryant).