Participation in life activities after hematopoietic cell transplantation in older adults - PMC Skip to main content An official website of the United States government Here's how you know Here's how you know Official websites use .gov A .gov website belongs to an official government organization in the United States. Secure .gov websites use HTTPS A lock ( Lock Locked padlock icon ) or https:// means you've safely connected to the .gov website. Share sensitive information only on official, secure websites. Search Log in Dashboard Publications Account settings Log out Search… Search NCBI Primary site navigation Search Logged in as: Dashboard Publications Account settings Log in Search PMC Full-Text Archive Search in PMC Journal List User Guide PERMALINK Copy As a library, NLM provides access to scientific literature. Inclusion in an NLM database does not imply endorsement of, or agreement with, the contents by NLM or the National Institutes of Health. Learn more: PMC Disclaimer | PMC Copyright Notice Support Care Cancer . Author manuscript; available in PMC: 2026 Apr 17. Published in final edited form as: Support Care Cancer. 2025 Apr 17;33(5):393. doi: 10.1007/s00520-025-09399-5 Search in PMC Search in PubMed View in NLM Catalog Add to search Participation in life activities after hematopoietic cell transplantation in older adults Natalie von Oldenburg Natalie von Oldenburg 1 Division of Geriatrics, Gerontology, and Palliative Medicine, Department of Internal Medicine, University of Nebraska Medical Center, 986155 Nebraska Medical Center Omaha, NE 68198 ‑6155, Omaha, NE, USA Find articles by Natalie von Oldenburg 1 , Noelle Pick Noelle Pick 1 Division of Geriatrics, Gerontology, and Palliative Medicine, Department of Internal Medicine, University of Nebraska Medical Center, 986155 Nebraska Medical Center Omaha, NE 68198 ‑6155, Omaha, NE, USA Find articles by Noelle Pick 1 , Jessica N Semin Jessica N Semin 1 Division of Geriatrics, Gerontology, and Palliative Medicine, Department of Internal Medicine, University of Nebraska Medical Center, 986155 Nebraska Medical Center Omaha, NE 68198 ‑6155, Omaha, NE, USA Find articles by Jessica N Semin 1 , Marcia Free Marcia Free 1 Division of Geriatrics, Gerontology, and Palliative Medicine, Department of Internal Medicine, University of Nebraska Medical Center, 986155 Nebraska Medical Center Omaha, NE 68198 ‑6155, Omaha, NE, USA Find articles by Marcia Free 1 , Weston Ernst Weston Ernst 1 Division of Geriatrics, Gerontology, and Palliative Medicine, Department of Internal Medicine, University of Nebraska Medical Center, 986155 Nebraska Medical Center Omaha, NE 68198 ‑6155, Omaha, NE, USA Find articles by Weston Ernst 1 , Diane M Hill‑Polerecky Diane M Hill‑Polerecky 2 Blood and Marrow Transplantation Program, Nebraska Medicine, Omaha, NE, USA Find articles by Diane M Hill‑Polerecky 2 , Kimberly A Miller Kimberly A Miller 2 Blood and Marrow Transplantation Program, Nebraska Medicine, Omaha, NE, USA Find articles by Kimberly A Miller 2 , Vijaya R Bhatt Vijaya R Bhatt 4 Division of Hematology Oncology, Department of Internal Medicine, University of Nebraska Medical Center, Fred & Pamela Buffett Cancer Center, Omaha, NE, USA Find articles by Vijaya R Bhatt 4 , Tanya M Wildes Tanya M Wildes 4 Division of Hematology Oncology, Department of Internal Medicine, University of Nebraska Medical Center, Fred & Pamela Buffett Cancer Center, Omaha, NE, USA Find articles by Tanya M Wildes 4 , Paul A Estabrooks Paul A Estabrooks 3 Department of Health and Kinesiology, University of Utah, Salt Lake City, UT, USA Find articles by Paul A Estabrooks 3 , Alfred L Fisher Alfred L Fisher 1 Division of Geriatrics, Gerontology, and Palliative Medicine, Department of Internal Medicine, University of Nebraska Medical Center, 986155 Nebraska Medical Center Omaha, NE 68198 ‑6155, Omaha, NE, USA Find articles by Alfred L Fisher 1 , Katherine J Jones Katherine J Jones 5 Nebraska Coalition for Patient Safety, Omaha, NE, USA 6 College of Public Health, University of Nebraska Medical Center, Omaha, NE, USA Find articles by Katherine J Jones 5, 6 , Thuy T Koll Thuy T Koll 1 Division of Geriatrics, Gerontology, and Palliative Medicine, Department of Internal Medicine, University of Nebraska Medical Center, 986155 Nebraska Medical Center Omaha, NE 68198 ‑6155, Omaha, NE, USA Find articles by Thuy T Koll 1 Author information Article notes Copyright and License information 1 Division of Geriatrics, Gerontology, and Palliative Medicine, Department of Internal Medicine, University of Nebraska Medical Center, 986155 Nebraska Medical Center Omaha, NE 68198 ‑6155, Omaha, NE, USA 2 Blood and Marrow Transplantation Program, Nebraska Medicine, Omaha, NE, USA 3 Department of Health and Kinesiology, University of Utah, Salt Lake City, UT, USA 4 Division of Hematology Oncology, Department of Internal Medicine, University of Nebraska Medical Center, Fred & Pamela Buffett Cancer Center, Omaha, NE, USA 5 Nebraska Coalition for Patient Safety, Omaha, NE, USA 6 College of Public Health, University of Nebraska Medical Center, Omaha, NE, USA Author contribution Conceived and designed the study: Koll, Estabrooks, and Jones. Participated in data acquisition: Koll and Semin. Analyzed data: Koll, Semin, and Jones. Interpreted the data: all authors. Wrote the manuscript: all authors. Edited the manuscript: all authors. All authors revised for intellectual content and approved the final version of the manuscript. ✉ Thuy T. Koll, [email protected] Collection date 2025 Apr 17. PMC Copyright notice PMCID: PMC12218019 NIHMSID: NIHMS2088494 PMID: 40244442 The publisher's version of this article is available at Support Care Cancer Abstract Objectives This study aims to measure activity participation and describe barriers and goals for participation in older adults post-HCT. Materials and methods In a convergent mixed methods design, we quantitatively assessed four domains of participation (instrumental, low demand leisure, high demand leisure, and social) using the modified Activity Card Sort (ACSm) and described cognitive, physical, and psychosocial function using validated measures. Semi-structured interviews were used to describe barriers and goals for participation. Results Eighteen participants with the median age of 66 years (range 60–75 years) completed the ACSm and interview. Seventeen of the 18 participants were > 6 months post-HCT and 44% of the total participants were > 12 months out from transplant. Overall, participants returned to 80% of their total activities. Mean retention was the highest in low-demand leisure activities (89%), followed by instrumental (85%), social (77%), and high-demand leisure activities (59%). Fatigue and impaired physical function were barriers for all activity domains. Participants discussed cognitive function as a barrier for many instrumental and low-demand leisure activities. Side effects, complications (i.e., osteoporosis and GVHD) and immune suppression were barriers to high-demand leisure activities. Participants talked about the meaning and purpose behind activity participation, highlighting the centrality of returning to life activities despite ongoing symptoms. There were multiple goals discussed related to activity participation. Conclusion Older adults undergoing HCT have diminished functional reserve and need more time to recover from activities that require sustained energy. Physical activity promotion programs targeting activity limitations and participation restrictions in cancer survivors are particularly salient for older adults undergoing HCT. Keywords: Hematopoietic cell transplant, Physical activity, Lived experience, Survivorship, Quality of life Introduction Hematopoietic cell transplantation (HCT) is a life-prolonging and potentially curative treatment for many hematological malignancies [ 1 ]. With advances in treatment regimens and supportive care, more adults ≥ 60 years are receiving HCT. Using qualitative methods, we previously reported that older adults who were ≥ 3 months post-HCT used social support and reappraisal to adapt to challenges post-HCT [ 2 ]. We found that physical, psychological, cognitive, and age-related limitations prevented participation in their home, work, and leisure activities. Participation in life activities is an important domain of health-related quality of life (HRQOL) for older adults [ 3 ] and is an indicator of health and recovery following cancer treatment [ 4 , 5 ]. However, the extent of activity participation and the nature of participation restrictions post-HCT in older adults has not been explored. We need to understand the prevalence of participation restrictions and older adults’ goals for participation post-HCT to design patient-centered interventions. Historically, rehabilitation programs for HCT survivors have focused on mitigating cancer and treatment-related physical impairments [ 6 ]. Experts in cancer rehabilitation have called for an expansion of research and practice to include participation as a rehabilitation goal [ 7 ]. Interventions to increase participation in life activities may include exercise to mitigate physical impairments in addition to promoting activities aligned with individual preferences, needs, and social context [ 8 ]. There is no intervention focused on improving activity limitations and participation restrictions among older adults in the HCT setting. Evidence-based physical activity promotion programs for older adults in the community have potential impacts on participation but would require adaptation to the unique needs of older adults undergoing HCT. The primary aim of this manuscript is to extend our original analysis by converging qualitative findings with quantitative findings that measure activity participation in older adults post-HCT. Our secondary aim is to describe barriers and patient-reported goals for participation post-HCT. This mixed methods approach will identify patient specific factors to consider in the design and/or adaptation of existing evidence-based physical activity promotion programs that are intended to improve participation among older adults post-HCT. Methods Study design We used a convergent mixed-methods design consisting of semi-structured interviews, data abstracted from medical records, geriatric assessment (GA) that included validated measures of cognitive, physical, and psychosocial function, and a validated questionnaire to quantify activity participation. Semi-structured interviews were used to describe the nature of activity restrictions. Setting and participants We conducted the study from November 2017 to November 2018 at a tertiary cancer center in the midwestern USA. We used purposeful sampling to recruit 20 participants during an oncology follow-up visit using the following inclusion criteria: community-dwelling adults ≥ 60 years; diagnosis of a hematological malignancy; ≥ 3 months post-autologous or allogeneic HCT; and ability to speak, read, write, and understand English. Quantitative measures We used the Activity Card Sort Modified (ACSm), which was adapted for the HCT population,[ 9 ] to measure participation in four activity domains: Instrumental, i.e., driving, paying bills, and childcare Low-physical-demand leisure, i.e., puzzles, quilting, and photography High-physical-demand leisure, i.e., bicycling, wood-working, and hiking Social activities, i.e., volunteer work, visiting friends, and traveling Previous research has demonstrated the construct validity and reliability (internal consistency) of the ACSm. Specifically, overall ACSm scores were correlated with overall quality of life, functional well-being and performance status, and had high reliability (Cronbach’s alpha > 0.86) [ 10 ]. Patients completed the ACSm as a self-administered checklist by rating activities as (1) Never done before transplant, (2) Do now as often as before transplant, (3) Do less or differently than before transplant, (4) Not done since transplant, or (5) New activity since transplant. We used GA measures to describe the different domains of function of the participants including frailty [ 11 ] (Fried Frailty Index), cognition (Montreal Cognitive Assessment), functional mobility [ 12 ] (Short Physical Performance Battery [SPPB]), nutrition [ 13 ] (Mini Nutritional Assessment-Short Form [MNA-SF]), depression [ 14 ] (Geriatric Depression Scale- 15 [GDS- 15]), anxiety [ 15 ] (Generalized Anxiety Disorder- 7 [GAD- 7]), and perceived social support [ 16 ] (Medical Outcomes Social Support Survey [MOS-SS]). We abstracted demographic, disease, and treatment-related factors from medical records including age, gender, race, marital status, work status at the time of interview (e.g., retired, employed), education, disease type, transplant type, transplant conditioning intensity, graft-versus-host disease (GVHD) status, a complication of allogeneic HCT (up to time of interview), and time since transplant. Qualitative measures One researcher (JS, nurse research coordinator) conducted semi-structured interviews in a private clinic room that lasted 40 to 120 min. JS documented her reflections after every interview to improve the dependability of data collection and analysis. Ethical considerations This study was approved by the Institutional Review Board of the University of Nebraska Medical Center. Research was conducted in accordance with the Declaration of Helsinki. We obtained written informed consent from the study participants. The study participants could decline to answer any interview question and withdraw from the study at any time. Data analysis We scored the ACSm as described by Lyons et al. [ 10 ] Scores were determined based on respondents’ rating of each activity. Scores for categories “do now as often as before” and “do less or differently than before transplant” were summed to calculate the proportion of premorbid activities retained post-transplant. To calculate retention of premorbid activities, we divided the total found for activities retained on post-transplant by the pre-transplant activity total and multiplied by 100. The sum of “do now as often as before transplant,” “do less or differently than before transplant,” and “not done since transplant” categories made up pre-transplant activity. We used descriptive statistics to describe patients’ demographic and clinical characteristics, and questionnaire results. Interviews were audio-recorded and transcribed, and imported text was analyzed using a qualitative analysis software program, NVIVO. The qualitative analysis of the data used a deductive approach that broadly aligned information across the types of activities and the barriers associated with participation in activities. The generation of themes and sub-themes from these data used an inductive approach. As new themes emerged, we refined the codes and recoded the transcripts based upon consensus of two researchers (TTK and KJJ) until saturation was achieved. We used memos within NVIVO to document our reflections about emerging relationships between themes. We sought to improve the dependability of our results by using field notes, debriefing, and the memo function in NVIVO to document decision-making processes in coding and analysis. Results Quantitative data Participant characteristics Eighteen participants with the median age of 66 years (range 60–75 years) completed the ACSm and interview. There were 39% allogeneic and 61% autologous HCT recipients. Allogeneic HCT recipients were younger with the median age of 63 compared to 67 years among autologous recipients. Participants were mostly male (67%), all were Caucasian, with 89% being married, and most participants reported post-secondary education (74%). At the time of interview, over 40% of participants were employed, more allogeneic HCT recipients were on sick leave/disability (28.6% vs. 18.2%). Seventeen of the 18 participants were > 6 months post-HCT at time of interview and ACSm. Forty-four percent of the total participants were ≥ 12 months post-HCT. Four of the seven allogenic transplant recipients had experienced acute GVHD up to the time of interview, and one of those four had also developed chronic GVHD. Post-HCT, there was a high prevalence of pre-frailty (94%). Cognitive and functional mobility impairment were present in 33% and 13%, respectively. Over 30% of participants were at risk for malnutrition. The prevalence of anxiety and depression was both at 6%. Almost half of the participants perceived lower social support defined as MOS of < 80%. There were no differences in frailty, cognition, functional mobility, nutrition, depression, anxiety, and perceived social support between the two transplant types ( Table 1 ). Table 1. Demographic and clinical characteristics of study participants who completed interviews about participation in life activities post-HCT ( N = 18) Characteristic Total ( n = 18) Allogeneic HCT ( n varies 4–7) Autologous HCT ( n = 11) p -value Median age in years, (range) 66 (60–75) 63 (60–67) 67 (60–75) 0.036 Male gender, n (%) 12 (67%) 5 (71.4%) 7 (63.6%) 0.73 Caucasian race, n (%) 18 (100%) 7 (100.0%) 11 (100.0%) 1.0 Married, n (%) 16 (89%) 6 (85.7%) 10 (90.9%) 0.73 Work status, n (%) 0.51 Employed 8 (44%) 3 (42.9%) 5 (45.5%) Retired 6 (33%) 2 (28.6%) 4 (36.4%) Sick leave/disability 4 (22%) 2 (28.6%) 2 (18.2%) Education, n (%) 0.50 High school graduate 5 (29%) 1 (14.3%) 4 (36.4%) Some college 7 (40%) 4 (57.1%) 3 (27.3%) Bachelor’s degree 1 (6%) 0 1 (9.1%) Graduate degree 5 (28%) 2 (28.6%) 3 (27.3%) Disease type, n (%) < 0.001 Multiple myeloma 6 (33%) 0 6 (54.5%) Lymphoma 5 (29%) 0 5 (45.5%) Leukemia/MDS 7 (39%) 7 (100.0%) 0 Reduced intensity conditioning treatment, n (%) 5 (71.4%) NA GVHD at the time of interview, n (%) 4 (57.1%) NA Time since transplantation 1.0 Median in days (range) 314 (114–428) 314 (205–428) 278 (114–405) ≤ 6 months 1 (5.6%) 0 (0%) 1 (9.1%) 6–11 months 9 (50.0%) 5 (71.4%) 4 (36.4%) ≥ 12 months 8 (44.4%) 2 (28.6%) 6 (54.5%) Frailty (Fried’s frailty phenotype), n (%) 0.49 Pre-frail (1–2 criteria) 15 (94%) 5 (100%) 10 (90.1%) Frail (3–5 criteria) 1 (6%) 0 (0%) 1 (9.1%) Cognitive impairment (MoCA < 26), n (%) 5 (33%) 1 (25%) 4 (36.4%) 0.68 Functional mobility impairment (SPPB < 9), n (%) 2 (13%) 0 (0%) 2 (18.2%) 0.36 At risk for malnutrition (MNA-SF < 11), n (%) 6 (33%) 3 (42.9%) 3 (27.3%) 0.47 Depression (GDS- 15 ≥ 5), n (%) 1 (6%) 1 (14.3%) 0 0.41 Anxiety (GAD- 7 ≥ 10), n (%) 1 (6%) 0 1 (9.1%) 1.0 Low social support (MOS-S < 80%), n (%) 8 (47%) 3 (42.9%) 5 (50%) 0.77 Open in a new tab HCT , hematopoietic cell transplantation; MoCA , Montreal Cognitive Assessment; SPPB , Short Physical Performance Battery; MNA-SF , Mini Nutrition Assessment-Short Form; GDS , Geriatric Depression Scale; GAD , Generalized Anxiety Disorder; MOS-S , Medical Outcome Survey-Social. Overall, participants returned to 80% of their total activities. Mean retention was the highest in low-demand leisure activities (89%), followed by instrumental (85%), social (77%), and high-demand leisure activities (59%). Autologous HCT recipients retained more activities post-HCT than allogeneic recipients. These differences were marginally greater for instrumental (89.5% vs 78.8%, p = 0.056), high-demand leisure activities (69.9% vs. 42.7%, p = 0.056), and total activities (85.7% vs. 70%, p = 0.069) ( Table 2 ; Fig. 1 ). Table 2. Activity retention post-HCT ACSm domain retained, mean % (SD) Total ( n = 18) Allogeneic HCT ( n = 7) Autologous HCT ( n = 11) Instrumental 85% (18.6) 78.8% (14.8) 89.5% (20.2) 0.056 Low demand-leisure 89% (15.0) 82.8% (18.5) 93% (11.5) 0.10 High demand-leisure 59% (28.3) 42.7% (25.8) 69.9% (25.4) 0.056 Social 77% (22.8) 65.7% (28.5) 84.8% (15.5) 0.13 Total 80% (18.4) 70% (20.2) 85.7% (14.9) 0.069 Open in a new tab ACSm , Activity Card Sort-modified Fig. 1. Open in a new tab Retention of pre-HCT activities Qualitative data Post-HCT, participants were more likely to return to low demand-leisure activities (i.e., reading and doing puzzles), instrumental activities of daily living, (i.e., light housework), and social activities (i.e., spending time with family and volunteering). Participants aspired to return to work and high-demand leisure activities that require sustained energy outside of the home (i.e., travel). Fatigue and impaired physical function were barriers for all activity domains. Participants discussed cognitive function as a barrier for many instrumental and low-demand leisure activities. Side effects, complications (i.e., osteoporosis and GVHD), and immune suppression were barriers to high-demand leisure activities. Table 3 provides examples of activities, barriers, and exemplar quotes. Table 3. Activities retained, goals/aspirations and barriers Barriers Exemplary quotes Retained activities • Reading/doing puzzles/working on the computer • Hobbies (crafts, sewing, painting, house decorating) • Watching TV • Instrumental activities (paying bills)/light housework (laundry, cooking) • Spending time with family • Volunteering Fatigue Physical function Cognitive function “And then I get real tired and if I’m standing for very long, like trying to cook in the kitchen. …. Cooking a meal is real hard anymore. I’m in the kitchen for even 20–30 minutes I gotta go sit down.” (P9, 67 years old, autologous HCT, 12 months, on disability) “There is chemo fog. Even today, there’s still some changes, and there’s days you’re tired and there are days you can’t put your finger on the reason, but as long as you’re on some kind of a drugstore program, the memory loss. It’s real…. and you learn to deal with them. You learn that, if it’s important, take notes or tell somebody else.” (P8, 65 years old, autologous HCT, 7 months, employed) Goals/aspirations • Working • Exercising • Gardening • Camping • Hiking • Performing heavy housework (snow removal, yard work) • Traveling Fatigue Physical function Side effects and complications Immune suppression “Fixing things or working out in the yard, where I used to just get up go out and do it and then it just took a few minutes. Now it takes hours and have to stop and rest. It’s just that my body doesn’t want to follow along. That’s kind of hard.” (P16, 63 years old, allogeneic HCT, 11 months, on disability) “Today I’m still not back to work, I’ve been on pain medicine, and so I’m working to get off of that. I developed neuropathy in my feet really bad with the Velcade, … and it seemed like it really hit me after the transplant, and my feet were so bad that I’d cry sometimes even on pain medicine.” (P7, 60 years old, autologous HCT, 9 months, sick leave) Open in a new tab Participants talked about the meaning and purpose behind activity participation, highlighting the centrality of returning to life activities despite ongoing symptoms. There were multiple goals discussed related to activity participation. Table 4 expands the sub-themes participants described related to their goals for participation and provides exemplary quotes. Table 4. Goals for participation Themes Definition Exemplary quotes Keeping busy Developing new routines and activities in response to inability to participate in previous high demand leisure and work activities “Well, I wouldn’t say just the transplant, but the interruption of leukemia altogether came so early in my retirement. I had not had a chance to establish a pattern or rhythm in my retirement life prior to leukemia so that I felt that I knew what I was returning to. I’m still seeking that out- what am I going to do in my retirement? Right now, I am organizing Christmas cards and presents. Then, I go to Mexico City for two weeks to visits family.” (P20, 67 years old allogeneic HCT, 11 months, retired) Valuable activities Doing activities that bring joy or meaning to life Returning to or building on previous interests/activities “My weekly obligation is to play the organ for church services. I enjoy doing that as an extension of what my career was as a church musician.” (P20, 67 years old, allogeneic HCT, 11 months, retired) “I have done a lot more things in my home, like home decorating. I wasn’t home to do it. I didn’t have time; my home took second place to work. (P5. 62 years old, allogeneic HCT, 13 months, disability leave) Staying mentally active Doing activities that help engage the brain “I love to put puzzles together. I do that through the day… for me putting puzzles together it’s relaxing, and it’s detailed. It takes a lot of concentration.” (P1, 66 years old, allogeneic HCT, 12 months, retired) “I started painting again. When I got my paint brush in my hand, I felt like I was awake.” (P16, 63 years old, allogeneic HCT, 11 months, on disability) Helping others Feeling able to contribute to family and community “I help take care of the grandkids more than I used to. I used to be at work. I basically replaced the stuff I did at work with running around and taking care of grandkids more.” (P17, 63 years old, allogeneic HCT, 7 months, sick leave) Regaining a sense of self Regaining a sense of identity and purpose “…I did start to do more activities like the laundry and doing dishes and felt more like myself then when I could start doing stuff like that.” (P10, 60 years old, 7 months post-allogeneic HCT, employed/sick leave) “I still don’t concentrate like I used to. I’m the one in our family that does all the bill paying and all the money. I kept doing that because it was sort of an escape for me. My wife is retired so she helped.” (P3, 65 years old, autologous HCT, 12 months, retired) Achievement Being proud of progression in the HCT recovery process in the context of age-related changes “I used to go for long walks… I’m starting to slow down and get a little tired, we used to walk around this lake that’s nearby. I’m getting too old [for long walks] Actually, I’m pretty thankful for what I can do now compared to a year ago. I’m just pretty much satisfied with what I can do, and I can tell that things are getting better.” (P16, 63 years olde, allogeneic HCT, 11 months, on disability) Social connection Having (and keeping) valued relationships “To me it was not about going on a big trip and going to places I hadn’t seen, and it was more about just spending time with my family, and my kids. I started doing other things to take the place of gardening, calling friends who don’t work during the day. I have a lot of coffee groups.” (P5. 62 years old, allogeneic HCT, 13 months, disability leave) Open in a new tab Keeping busy Participants described developing new routines and activities in response to the inability to participate in previous high-demand leisure and work activities. Participants actively sought alternate activities for their extra time, including social ones, and considered the question, “What am I going to do in my retirement?”. Valuable activities Participants worked on doing activities that brought joy and meaning to their life, as well as returning to or building on previous interests/activities. Participants engaged in previous hobbies that they did not have time for while working. For those who were retired, volunteering in activities allowed them to continue some of their work activities. For example, one participant described how playing the organ for church services allowed him to still play music. For those who were on sick leave/disability, valuable activities (i.e. returning to work) served as a goal to attain. Another participant discussed coping with pain and working towards getting off pain medications so she can go back to work. Staying mentally active Participants performed activities during the day that required sustained attention. One participant reported doing puzzles to relax and improve concentration. Another participant described how painting helped him feel awake as he struggled with fatigue. Helping others Doing activities that enabled participants to contribute to family and the community. Participants described being able to be around and help their children and grandchildren. Regaining a sense of self Many patients were still facing multiple challenges in their health beyond 6 months post-HCT. The ability to do basic and instrumental activities of daily living helped them regain a sense of self. Achievement For many, a sense of achievement resulted from the realization that they had progressed in their HCT recovery, while also considering the context of age-related changes. One participant felt satisfied with what he could do in his recovery, given that he was aging along with recovering from HCT. Social connection Having and keeping valued relationships were important. One participant described a changed sense of priorities and shifting her focus to spending time with friends and family. Discussion The extent of activity participation and the nature of participation restrictions post-HCT in older adults have not been explored. In this manuscript, we extend our original analysis [ 2 ] by converging qualitative findings with quantitative findings to examine the prevalence of participation restrictions and describe barriers and goals for participation in older HCT survivors. We found that activity retention was highest in low demand leisure, followed by instrumental, social, and high demand leisure activity domains. Allogeneic HCT recipients experienced more participation restrictions in high-demand leisure activities compared to autologous HCT. The above pattern of activity retention is consistent with previous research using the ACSm measure in younger HCT recipients [ 9 ] at 6 months post-HCT. However, compared to younger HCT recipients who retained 77% of high-demand leisure activities at 6 months post-HCT, our participants had lower retention of high demand activities at 59%. Of note, the median time since transplant in our sample was 314 days (range of 114–428). This finding suggests that older adults undergoing HCT have diminished functional reserve and may need more time to recover activities that require sustained energy. Future research with longer follow-up is needed to better understand the trajectory of activity participation beyond the first 1–2 years post-HCT. One-third of our participants had cognitive impairment post-HCT ( n = 5, 30%). This aligns with patient-reported difficulties with instrumental and low-demand leisure activities that may be more cognitively demanding. Physical function and fatigue were reported as barriers for all activity domains, despite low prevalence of objective physical impairment as measured by SPPB < 9 ( n = 2, 13%) and frailty ( n = 1, 13%). However, 15 (94%) participants met criteria for pre-frail, which is still a vulnerable state for poor outcomes and is most amenable to interventions [ 17 ]. This finding substantiates previous research demonstrating that cancer and treatment such as HCT can accelerate aging [ 18 – 22 ]. Physical activity has been shown to improve physical function [ 23 ] and prevent the progression to frailty [ 23 , 24 ] and cognitive impairment in older adults [ 25 ]. Activity-focused approaches may address both cancer and treatment-related impairments and participation in multiple activity domains. Given the persistence of barriers and continued participation restrictions, older adults undergoing HCT would likely benefit from a program that extends beyond the acute recovery period. The program may include an activity-based intervention with behavioral strategies to mitigate cancer and treatment-related impairments and aid participants in adapting to limitations and overcoming barriers such as fatigue and HCT-related complications (i.e., GVHD). Exercise interventions should be tailored to each individual in the post-HCT period based on physical and cognitive function, perceived barriers to activity, patient values, and goals for activity participation. In older adults, these should be assessed at intervals throughout the first 1–2 years post-HCT, and an exercise prescription developed by a qualified professional targeting adaptations to prior activities and transitions to new activities. Given our results on barriers to activity participation, exercise interventions targeting physical function including increased balance and mobility as well as mitigation of frailty and fatigue would be beneficial. Strength and resistance training, specifically, have been shown to improve sarcopenia and physical status with frailty [ 26 , 27 ]. Among community dwelling pre-frail and frail older adults, a goal-directed, individually tailored exercise program incorporating resistance, balance, and aerobic exercise has been shown to aid in fatigue reduction [ 28 ]. Finally, there is mounting support for the role of physical activity in improving cognitive function [ 29 ]. Cognitive function is important to maintain functional independence and participation across all types of activity domains as people age. Our study has the following strengths. First, our study expands the literature on participation in life activities post-HCT by focusing on HCT recipients ≥ 60 years. To our knowledge, this is the first study to provide an in-depth description of participation in older adults undergoing HCT. Second, our mixed-methods approach adds depth and meaning to the multidimensional concept of participation. It highlights the importance of personal and contextual factors as well as activity demands on participation in life activities. Finally, our findings substantiate the need to not only address cancer and treatment-related impairments but also to help older survivors maximize participation that reflects their values, roles, and life situations. There are limitations to our study. The sample was small ( n = 18), limited to a Midwestern cancer center, and not racially/ethnically diverse (i.e., all Caucasian). Additionally, the time since HCT varied from 114 to 428 days. This study may not be representative of the experiences of all older HCT patients. Many participants reported fatigue as a reason for their limitations, but we were not able to quantify the amount of fatigue. Future studies that incorporate geriatric assessment variables and measures of fatigue are needed to understand predictors of participation in activity domains. Clinical implications Using qualitative methods, we previously reported that older adults who were ≥ 3 months post-HCT used social support, revision of goals, and reappraisal to adapt to challenges post-HCT[ 2 ]. We found that physical, psychological, cognitive, and age-related limitations prevented participation in their home, work, and leisure activities. Together with the findings from our previous work, our findings in this manuscript have the following implications for clinical care as well as informing the development and adaptation of evidence-based physical activity promotion programs to promote activity participation. First, assessing older patients’ goals and expectations of returning to life activities is important for care teams to provide reasonable expectations and plans for reengagement. Second, developing or adapting a physical activity program should include the following elements for older adults undergoing HCT: (1) assessment of meaningful life activities and incorporation of these preferences into a physical activity program with exercises to help participants reach prioritized goals; (2) explicit activity planning, adaptations, expectation management and revision of goals; (3) support and adaptation for participation in low demand, instrumental and social activities for those who are struggling more with functional decline and fatigue; and (4) engagement of family and friends in planning and supporting patients with physical activity as well as joining their loved one in activity participation. Conclusion Our study provides context for the discussion of expectations to changes in daily life post-HCT. Despite a small sample size, it appears that interventions promoting activity participation in cancer survivors are particularly salient for older adults undergoing HCT. These findings support the need to adapt evidence-based physical activity promotion programs to align with the participation priorities of older adults post-HCT. Acknowledgements This work was supported by the Fred and Pamela Buffett Cancer Center Support Grant from the National Cancer Institute (P30 CA036727). TTK is supported by a grant from the National Institute on Aging (K23 AG070311). VRB is supported by a grant from the National Cancer Institute of the National Institutes of Health under award number R37 CA276928. The content is solely the responsibility of the authors and does not necessarily represent the official views of the NIH. Funding Funding was provided by the Division of Geriatrics, Gerontology, and Palliative Medicine at the University of Nebraska Medical Center. Footnotes Declarations Conflict of interest VRB reports participating in the Safety Monitoring Committee for Protagonist, serving as an Associate Editor for the journal, Current Problems in Cancer , and as a contributor for BMJ Best Practice , and receiving consulting fees from Imugene, Sanofi, Taiho, research funding (institutional) from MEI Pharma, Actinium Pharmaceutical, Sanofi US Services, Abbvie, Pfizer, Incyte, Jazz, and National Marrow Donor Program, and drug support (institutional) from Chimerix for a trial. All other authors have no conflicts of interest to report. The authors declare no competing interests. Data Availability No datasets were generated or analysed during the current study. References 1. D’Souza A, Fretham C, Lee SJ et al. (2020) Current use of and trends in hematopoietic cell transplantation in the United States. Biol Blood Marrow Transplantation : J Am Soc Blood Marrow Transplantation 26(8):e177–e182. 10.1016/j.bbmt.2020.04.013 [ DOI ] [ PMC free article ] [ PubMed ] [ Google Scholar ] 2. Koll TT, Semin JN, Coburn RA et al. (2020) Returning to life activities after hematopoietic cell transplantation in older adults. J Geriatric Oncol 11(2):304–310. 10.1016/j.jgo.2019.11.008 [ DOI ] [ PMC free article ] [ PubMed ] [ Google Scholar ] 3. van Leeuwen KM, van Loon MS, van Nes FA et al. (2019) What does quality of life mean to older adults? A thematic synthesis. PLoS ONE 14(3):e0213263. 10.1371/journal.pone.0213263 [ DOI ] [ PMC free article ] [ PubMed ] [ Google Scholar ] 4. L’Hotta AJ, Yan Y, Davis AA et al. (2023) Trajectories of participation in daily life among individuals newly diagnosed with cancer: a 5-month longitudinal study. Support Care Cancer : Official J Multinational Assoc Supportive Care in Cancer 31(4):213. 10.1007/s00520-023-07672-z [ DOI ] [ PMC free article ] [ PubMed ] [ Google Scholar ] 5. Lyons KD, Lambert LA, Balan S, Hegel MT, Bartels S (2013) Changes in activity levels of older adult cancer survivors. OTJR: Occupation, Participation and Health. 33(1):31–39 [ Google Scholar ] 6. Steinberg A, Asher A, Bailey C, Fu JB (2015) The role of physical rehabilitation in stem cell transplantation patients. Support Care Cancer : Official J Multinat Assoc Supportive Care Cancer 23(8):2447–2460. 10.1007/s00520-015-2744-3 [ DOI ] [ PMC free article ] [ PubMed ] [ Google Scholar ] 7. Newman RM, Alfano CM, Radomski MV et al. (2019) Catalyzing research to optimize cancer survivors’ participation in work and life roles. OTJR (Thorofare N J) 39(4):189–196. 10.1177/1539449219844749 [ DOI ] [ PubMed ] [ Google Scholar ] 8. Brick R, Turner R, Bender C et al. (2022) Impact of non-pharmacological interventions on activity limitations and participation restrictions in older breast cancer survivors: a scoping review. J Geriatric Oncol 13(2):132–142 [ DOI ] [ PubMed ] [ Google Scholar ] 9. Lyons KD, Hull JG, Root LD et al. (2011) A pilot study of activity engagement in the first six months after stem cell transplantation. Oncol Nurs Forum 38(1):75–83. 10.1188/11.onf.75-83 [ DOI ] [ PubMed ] [ Google Scholar ] 10. Lyons KD, Li Z, Tosteson TD, Meehan K, Ahles TA (2010) Consistency and construct validity of the Activity Card Sort (modified) in measuring activity resumption after stem cell transplantation. Am J Occup Ther Jul-Aug 64(4):562–569. 10.5014/ajot.2010.09033 [ DOI ] [ PMC free article ] [ PubMed ] [ Google Scholar ] 11. Fried LP, Tangen CM, Walston J et al. (2001) Frailty in older adults: evidence for a phenotype. J Gerontol A Biol Sci Med Sci 56(3):M146–M157 [ DOI ] [ PubMed ] [ Google Scholar ] 12. Guralnik JM, Simonsick EM, Ferrucci L et al. (1994) A short physical performance battery assessing lower extremity function: association with self-reported disability and prediction of mortality and nursing home admission. J Gerontol 49(2):M85–M94 [ DOI ] [ PubMed ] [ Google Scholar ] 13. Rubenstein LZ, Harker JO, Salvà A, Guigoz Y, Vellas B (2001) Screening for undernutrition in geriatric practice: developing the short-form mini-nutritional assessment (MNA-SF). J Gerontol A Biol Sci Med Sci 56(6):M366–M372 [ DOI ] [ PubMed ] [ Google Scholar ] 14. Brink TL, Yesavage JA, Lum O, Heersema PH, Adey M, Rose TL (1982) Screening tests for geriatric depression. Clin Gerontol 1(1):37–43 [ Google Scholar ] 15. Spitzer RL, Kroenke K, Williams JB, Löwe B (2006) A brief measure for assessing generalized anxiety disorder: the GAD-7. Arch Intern Med 166(10):1092–1097 [ DOI ] [ PubMed ] [ Google Scholar ] 16. Sherbourne CD, Stewart AL (1991) The MOS social support survey. Soc Sci Med 32(6):705–714 [ DOI ] [ PubMed ] [ Google Scholar ] 17. Dent E, Martin FC, Bergman H, Woo J, Romero-Ortuno R, Walston JD (2019) Management of frailty: opportunities, challenges, and future directions. Lancet (London, England) 394(10206):1376–1386. 10.1016/s0140-6736(19)31785-4 [ DOI ] [ PubMed ] [ Google Scholar ] 18. Arora M, Bhatia S, DeFor TE et al. (2015) Impact of frailty on hematopoietic cell on early transplant outcomes in older recipients. Am Soc Hematol 126(23):388 [ Google Scholar ] 19. Arora M, Sun C-L, Ness KK et al. (2016) Physiologic frailty in nonelderly hematopoietic cell transplantation patients: results from the bone marrow transplant survivor study. JAMA Oncol 2(10):1277–1286 [ DOI ] [ PMC free article ] [ PubMed ] [ Google Scholar ] 20. Arora M, Chen Y, Wu J et al. (2021) Longitudinal trajectory of frailty in blood or marrow transplant survivors: report from the Blood or Marrow Transplant Survivor Study. Cancer 127(5):794–800. 10.1002/cncr.33313 [ DOI ] [ PMC free article ] [ PubMed ] [ Google Scholar ] 21. Huang LW, Shi Y, Andreadis C et al. (2023) Association of geriatric measures and global frailty with cognitive decline after allogeneic hematopoietic cell transplantation in older adults. J Geriat Oncol 14(8):101623. 10.1016/j.jgo.2023.101623 [ DOI ] [ PMC free article ] [ PubMed ] [ Google Scholar ] 22. Rashid N, Arora M, Jurdi NE et al. (2023) Frailty in patients with chronic graft-versus-host disease. Transplant Cell Ther 29(6):367–374. 10.1016/j.jtct.2023.03.010 [ DOI ] [ PMC free article ] [ PubMed ] [ Google Scholar ] 23. Jadczak AD, Makwana N, Luscombe-Marsh N, Visvanathan R, Schultz TJ (2018) Effectiveness of exercise interventions on physical function in community-dwelling frail older people: an umbrella review of systematic reviews. JBI Database System Rev Implement Rep 16(3):752–775. 10.11124/jbisrir-2017-003551 [ DOI ] [ PubMed ] [ Google Scholar ] 24. Haider S, Grabovac I, Dorner TE (2019) Effects of physical activity interventions in frail and prefrail community-dwelling people on frailty status, muscle strength, physical performance and muscle mass-a narrative review. Wien Klin Wochenschr 131(11–12):244–254. 10.1007/s00508-019-1484-7 [ DOI ] [ PMC free article ] [ PubMed ] [ Google Scholar ] 25. Wang S, Yin H, Wang X, et al. (2019) Efficacy of different types of exercises on global cognition in adults with mild cognitive impairment: a network meta-analysis. Aging Clin Experimental Res Feb 9 2019; 10.1007/s40520-019-01142-5 [ DOI ] [ PubMed ] [ Google Scholar ] 26. Rolland Y, Dupuy C, Abellan van Kan G, Gillette S, Vellas B (2011) Treatment strategies for sarcopenia and frailty. Med Clin North Am 95(3):427–ix. 10.1016/j.mcna.2011.02.008 [ DOI ] [ PubMed ] [ Google Scholar ] 27. Cadore EL, Pinto RS, Bottaro M, Izquierdo M (2014) Strength and endurance training prescription in healthy and frail elderly. Aging and Disease 5(3):183–195. 10.14336/AD.2014.0500183 [ DOI ] [ PMC free article ] [ PubMed ] [ Google Scholar ] 28. Liu JYW, Yin YH, Kor PPK, Kwan RYC, Lee PH, Chien WT, Siu PM, Hill KD (2023) Effects of an individualised exercise programme plus Behavioural Change Enhancement (BCE) strategies for managing fatigue in frail older adults: a cluster randomized controlled trial. BMC Geriatr 23(1):370. 10.1186/s12877-023-04080-0 [ DOI ] [ PMC free article ] [ PubMed ] [ Google Scholar ] 29. Mellow ML et al. (2022) How are combinations of physical activity, sedentary behaviour and sleep related to cognitive function in older adults? A systematic review. Experimental Gerontol 159:111698. [ DOI ] [ PubMed ] [ Google Scholar ] Associated Data This section collects any data citations, data availability statements, or supplementary materials included in this article. Data Availability Statement No datasets were generated or analysed during the current study. ACTIONS View on publisher site PDF (468.3 KB) Cite Collections Permalink PERMALINK Copy RESOURCES Similar articles Cited by other articles Links to NCBI Databases Cite Copy Download .nbib .nbib Format: AMA APA MLA NLM Add to Collections Create a new collection Add to an existing collection Name your collection * Choose a collection Unable to load your collection due to an error Please try again Add Cancel Follow NCBI NCBI on X (formerly known as Twitter) NCBI on Facebook NCBI on LinkedIn NCBI on GitHub NCBI RSS feed Connect with NLM NLM on X (formerly known as Twitter) NLM on Facebook NLM on YouTube National Library of Medicine 8600 Rockville Pike Bethesda, MD 20894 Web Policies FOIA HHS Vulnerability Disclosure Help Accessibility Careers NLM NIH HHS USA.gov Back to Top