Abstract
OBJECTIVES:
The prevalence of hematopoietic cell transplant (HCT) among older adults with hematological malignancies has doubled over the last decade and continues to grow. HCT is an intense process that can impact functional status and health-related quality of life. The objective of this paper is to describe the experience of returning to life activities after HCT in patients 60 years of age and older and the resources required to adapt and cope to limitations in physical, psychological, and cognitive function.
MATERIALS AND METHODS:
Twenty English speaking adults 60 years and older with hematological malignancy 3 to 12 months post-HCT completed semi-structured interviews. Open-ended questions and probes were guided by the Transactional Model of Stress and Coping to explore adaptive functioning, coping resources, and coping strategies. An integrated grounded theory approach was used to code the textual data to identify themes. The study took place at a tertiary comprehensive cancer center in the Midwest United States.
RESULTS:
Eight allogeneic and twelve autologous HCT recipients participated in the interviews. Nineteen participants were within 6-12 months and 1 participant was at 3 months post-HCT. Our findings identify the significant role of engaging in life activities and social support in the recovery of physical, psychological and cognitive function.
CONCLUSION:
Older HCT recipients are an understudied population. They are at high risk for functional decline. Our findings may provide community oncologists and primary care physicians with a context for providing care to older HCT survivors during their recovery.
Keywords: hematopoietic cell transplant, coping, lived experience, survivorship, quality of life
INTRODUCTION
Hematopoietic cell transplantation (HCT) is a life-prolonging and potentially curative treatment for patients with hematologic malignancies. The number of HCT recipients over the age of 60 years has more than doubled in the last decade.1 Advances in treatment regimens and supportive care have improved survival for this patient population. Over 50% of autologous HCT recipients for lymphoma and multiple myeloma were over 60 years of age in 20161 as compared to 25% in 2005.2 In 2016, over 30% of allogeneic HCT recipients were over 60 years of age1 as compared to <10% in 2005.3 Consequently, by 2030 there will be an estimated half-million HCT survivors in the United States4 and older patients will form a growing percentage of this population.
HCT is an intensive treatment that is associated with lower health-related quality of life (HRQOL) as compared to the general population.5 Patients receive intensive chemotherapy prior to transplant to control the underlying cancer. The transplant process consists of receiving more intensive chemotherapy and possibly radiation treatment, stem cell infusion from a donor (allogeneic) or from themselves (autologous), and prolonged hospitalization. Close weekly monitoring for complications and management of symptoms continues during the acute phase—up to three months post-HCT.
Patients experience rapid decline in physical, emotional, social, and role functioning immediately post-HCT with a return to pre-HCT levels beginning at three months.6 While overall HRQOL continues to improve for most patients, there is a subset who continues to experience impaired HRQOL beyond the acute phase.7 Despite improved survival, late effects of HCT are prevalent and have not improved with modern treatments.8 The risk of complications such as developing cardiovascular disease or diabetes is greater in older recipients and the presence of multiple comorbidities predicts poor health and functional status in HCT survivors8.
Many patients return to local oncologists and primary care providers (PCPs) when they are no longer closely monitored by a transplant center. Local oncologists continue to manage and monitor the disease process. Given that local oncologists and PCPs have an established relationship with patients and families, their role includes monitoring for HRQOL issues, implementing screening and preventive practices, and supporting patients’ and family members’ adaptation to limitations post-HCT.
Returning to life activities is an important goal for older patients post-HCT. However, current literature on adaptation and coping post-HCT has focused on younger survivors.9–17 Community providers may be unfamiliar with survivorship in HCT in general and with survivorship among older adults in particular, which may be complicated by age-related cognitive and functional decline. Thus, community providers may benefit from knowing how older HCT recipients cope and adapt to post-HCT physical, cognitive, and psychological stressors and use resources and strategies to facilitate the return to life activities, so that they can support patients and families. The purpose of this qualitative descriptive study was to describe the experience of returning to life activities in patients 60 years of age and older who were more than three months post-HCT. Of particular interest was how coping resources and strategies help older patients adapt and cope to limitations in physical, psychological, and cognitive function.
The work presented in this manuscript is guided by Dr. Arti Hurria and her work. She advocated for incorporating the principles of geriatrics into cancer survivorship care plans to prevent functional decline and improve health status. She frequently promoted the importance of integrating outcomes that matter to older patients, including maintaining function and cognition into research. Patient-centered information on how HCT treatment influences cognitive function, functional outcomes, overall experiences, and quality of life will have broad implications for patient education, treatment decision-making, and development of interventions for older HCT recipients.
MATERIALS AND METHODS
Conceptual Model
We chose the Transactional Model of Stress and Coping (TMSC) as the theoretical model to guide our investigation. According to the TMSC, the effect of stressors such as post-HCT sequelae can be attenuated or exacerbated by the individual’s appraisal and coping strategies.18. Appraisal is a process where the individual assesses the relevance and threat of the stressor. Based on this appraisal, the individual chooses problem-focused or emotion-focused coping strategies. Problem-focused strategies involve direct actions aimed to overcome limitations and adapt. Emotion-focused strategies involve passive cognitive processes such as acceptance, denial and disengagement. These coping strategies mediate coping outcomes. Returning to life activities may be conceptualized as adapting to physical, psychological, and cognitive limitations and is a coping outcome.
Study Design
This is a qualitative study using the grounded theory approach to develop a theory about the patient experience of returning to life activities and the influence of coping resources on adaptive functioning.
Participants
We used purposeful sampling to recruit a homogenous group of participants from a tertiary comprehensive cancer center using specific inclusion criteria.19 These criteria included: community-dwelling adults ≥60 years old, >3 months following autologous or allogeneic HCT, and able to speak and understand English. Transplant nurse case managers helped investigators recruit participants based on the inclusion criteria. Saturation was reached when the interviews generated no new substantial information.
Data collection
We developed an interview guide to elicit participant perceptions of the experience of returning to life activities post-HCT. These open-ended questions and probes were guided by the TMSC to explore adaptive functioning, coping resources, and coping strategies. One researcher (JS, nurse research coordinator) conducted 20 semi-structured interviews from November 2017 to November 2018. Each interview was conducted in a private clinic room and lasted 40 to 120 minutes. JS documented her reflections after every interview to improve the dependability of data collection.
Validated measures were used to describe the physical and psychological status of the participants at the time of interview. The measures included: 1) physical frailty20 (Fried Frailty Index), a score of ≥3 indicates frail, 1-2 indicates pre-frail and 0 indicates non-frail status; 2) falls (patients were asked if they had fallen in the last 6 months and if so, how many times); 3) depression21 (Geriatric Depression Scale), a score of >5 suggests depression and >10 is indicative of depression; and 4) anxiety22 (Generalized Anxiety Disorder), a score of > 10 indicates possible diagnosis of generalized anxiety disorder.
Ethical Considerations
This study was approved by the Institutional Review Board of the University of Nebraska Medical Center. We obtained verbal and written informed consent from all participants. Participants could withdraw from the study at any time.
Data Analysis
Interviews were audio-recorded, transcribed, and imported into NVivo qualitative data analysis software. We used an integrated grounded theory approach to code the textual data.23 This approach used inductive and deductive codes based on our organizing framework, the TMSC. We used an iterative approach to coding that began with an initial review of five transcripts by three researchers (TK, JS, and KJ) followed by a comparison of themes across all transcripts. We used open coding to identify main themes and sub-themes and axial coding using the matrix function in NVivo to relate main themes and subthemes to each other. Because we were primarily interested in the coping resource used to facilitate adaptive functioning, we limited axial coding to these themes and sub-themes. As new themes emerged, we refined the codes and recoded the transcripts based upon consensus of two researchers (TK and KJ) 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. We sought to improve the credibility of results by conducting member checking; we shared preliminary results with patients and elicited their feedback, which resulted in one participant clarifying their perception of aging and HCT.
RESULTS
Participants
Eight allogeneic and twelve autologous HCT recipients participated in the interviews (Table 1). Thirty-seven participants were approached and 20 consented to be in the study. Demographic and clinical characteristics of individual participants who participated in interviews about returning to life activities are included in Supplementary Table S1. Participants were predominantly male (63% for allogeneic and 75% for autologous HCT), and all were Caucasians with a mean age of 64 years (60-67) and 67 years (60-75) for allogeneic and autologous HCT, respectively. Interviews were conducted with 19 participants within 6-12 months and 1 participant at 3 months post-HCT.
Table 1.
Demographic and clinical characteristics of older HCT recipients who participated in interviews about returning to life activities (N=20)
| Allogeneic HCT (n = 8) | Autologous HCT (n = 12) | |
|---|---|---|
| Characteristic | ||
| Age in years, Median (Range) | 64 (60-67) | 67 (60-75) |
| Male Gender, n (%) | 5 (62.5%) | 9 (75.0%) |
| Caucasian Race, non-Hispanic ethnicity | 8 (100.0%) | 12 (100.0%) |
| Marital status | ||
| Married | 6 (75.0%) | 11 (92.0%) |
| Never married | 2 (25.0%) | 1 (8.0%) |
| Work status | ||
| Employed | 3 (37.5%) | 5 (42.0%) |
| Retired | 2 (25.0%) | 5 (42.0%) |
| Sick leave/Disability | 3 (37.5%) | 2 (17.0%) |
| Education | ||
| High school graduate | 2 (25.0%) | 3 (25.0%) |
| Some college | 4 (50.0%) | 4 (33.3%) |
| Bachelor’s degree | 0 | 1 (8.0%) |
| Graduate degree | 2 (25.0%) | 4 (33.0%) |
| Diagnosis | ||
| Multiple myeloma | 0 | 5 (42.0%) |
| Lymphoma | 0 | 7 (58.0%) |
| Leukemia/MDS | 8 (100.0%) | 0 |
| Time since transplantation | ||
| Median in days (Range) | 316 (210-428) | 347 (114-405) |
| ≤6 months | 0 | 1 (8.0%) |
| >6 months | 8 (100.0%) | 11 (92.0%) |
| Transplant Intensity♦ | ||
| Myeloablative | 3 (37.5%) | 11 (92.0%) |
| Reduced Intensity Conditioning | 5 (62.5%) | 8 (8.0%) |
| Disease status* | ||
| Primary disease progression | 8 (100.0%) | 10 (83.3%) |
| No disease progression | 0 | 2 (16.7%) |
| GVHD status* (Allogeneic) | ||
| Yes | 2 (25.0%) | |
| Comorbidity (HCT-Comorbidity Index) | ||
| HCT-CI (score ≥3) | 5 (62.5%) | 5 (42.0%) |
| Frailty (Fried frailty) | ||
| Non-frail | 1 (12.5%) | 0 |
| Pre-frail (1-2 criteria) | 5 (75.0%) | 11 (91.7%) |
| Frail (3-5 criteria) | 0 (0%) | 1 (8.3%) |
| Missing data | 2 (25.0%) | 0 |
| Falls in the last 6 months | ||
| ≥ 1 Fall | 2 (25.0%) | 2 (16.7%) |
| Depression (GDS-15) | ||
| GDS ≥5 | 1 (12.5%) | 0 (0%) |
| Anxiety (GAD-7) | ||
| GAD-7 ≥10 | 0 (0%) | 1 (9.1%) |
HCT, Hematopoietic Cell Transplantation
GDS, Geriatric Depression Scale
GAD, Generalized Anxiety Disorder
indicates status at the time of interview;
Regimen categorized as myeloablative in autologous HCT include: Melphalan dose > 200 mg/m2 and BEAM (melphalan, carmustine, cytarabine and etoposide);
Regimen categorized as reduced intensity in autologous HCT include Melphalan dose ≤140 mg/m2
Main themes and sub-themes
Three main themes emerged from the interviews: adaptive functioning, coping resources and coping strategies. Table 2 provides definitions of these main themes, sub-themes, and exemplary quotes from each. Figure 1 illustrates the number of participants whose perceptions were categorized into these themes and sub-themes.
Table 2.
Main themes, sub-themes, definitions, and examples of quotes of adaptive functioning, coping strategies and coping resources from interviews
| Main Themes and Sub-Themes | Definitions and Exemplary Quote(s) |
|---|---|
| Adaptive Functioning | |
| Adapt to change in physical function | Participants described their experience with returning to life activities, adapting and adjusting to physical limitations. P3, 64-year-old male (autologous HCT): “Like putting on my pants…I had to sit down…putting in one leg and then putting in the other without losing your balance was difficult…it makes sense when you know what they’ve done to you.” |
| Adapt to change in psychological function | Participants described their experience with returning to life activities, adapting and adjusting to psychological limitations. P13, 71-year-old male (autologous HCT): “[If] a guy retires and fiddles in the garden and [does] something every day, he’s got a lot better chance of surviving, [than] if you don’t do anything.” P5, 62-year-old female (allogeneic HCT): “It’s a world of unknowns… and it’s so hard …to take part in life. You want to recuperate…but you’re always living on the edge.” |
| Adapt to change in cognitive function | Participants described their experience with returning to life activities, adapting and adjusting to cognitive limitations. P5, 62-year-old female (allogeneic HCT): “When I first came back to cooking …I had a lot of flops, and I was very frustrated. But I kept at it, and I just tried to …go back to some of my easier recipes and built up…” P8, 65-year-old male (autologous HCT): “There is chemo fog…the memory loss…You learn that, if it’s important, [you need to] take notes or tell somebody else.” |
| Adapt to HCT and age- related changes | Participants described their experience with returning to life activities, adapting and adjusting to HCT and age-related changes. P12, 75-year-old male (autologous HCT): “…After a year, I’m at the point now where I say to myself ‘well I feel this way.’ Is that because of chemo or because I’m 76 years old’? … probably both of them [the chemo and age].” P3, 64-year-old male (autologous HCT): “Memory, that’s been an issue before all this; that is just part of the aging process…I’m a pretty voracious reader, and I couldn’t really even read…I’d find myself reading the same page over and over again.” |
| Coping Strategies | |
| Emotion-focused |
Participants described passive cognitive processes used to overcome limitations and adapt such as acceptance, denial and disengagement. P12, 75-year-old male (autologous HCT) adapting to change in physical function: “I think I did not have control over a lot…over time my energy would come up…so I think it was a matter of doing what I could, waiting for the time to pass.” |
| Problem-focused | Participants described direct actions aimed to overcome limitations and adapt. |
| Engaging in activities | P1, 65-year-old female (allogeneic HCT) adapting to change in physical function: “…I would walk around [the pool] and then I’d walk around another block. I just gradually would add another block.” |
| Maintaining routine | P13, 71-year-old male (autologous HCT) adapting to change in psychological function: “You can’t just sit there and let the world go by… I mean there might be mornings maybe I don’t feel like doing something, but I get up and do it anyway.” |
| Information seeking | P10, 60-year-old female (allogeneic HCT) adapting to change in psychological function: “I think we read all the handouts…how to have the house, how to clean, how to prepare the food, that was helpful, and having a list of things to look out for like graft vs. host, having the number to call if we had questions because we did have to call a couple times. It helped us feel more comfortable to know there was somebody right there at the phone that we could talk to.” |
| Self-management | P6, 64-year-old female (autologous HCT): “It’s just, I guess it’s [HCT experience] brought to life… health…just taking better care of yourself all the way around.” |
| Meaning-based Coping | Participants described strategies to induce positive emotions. Involves interpretation of a stressful situation in a personally meaningful way. |
| Benefit finding | P11, 70-year-old male (autologous HCT) adapting to change in psychological function: “I look back at the experience…I wouldn’t want to go through it ever again, but in a way I’m kind of glad I did because number one it showed me who was in control…I think God gave me this trial in my life so that somewhere down the road I can be a comfort to others.” |
| Goal setting | P5, 62-year-old female (allogeneic HCT) adapting to change in psychological function: “If you want to survive you’ve got to wake up every day and thank God you’re there and then… you’ve got to have goals. My goal was to make it to my daughter’s wedding…” |
| Reappraisal | P11, 70-year-old male (autologous HCT) adapting to change in psychological function: “Look for the best in everything, rely on those that are there for you from the medical staff through your family and friends, your wife in particular, and from your spiritual family …rely on all these people.” |
| Revised goals | P5, 62-year-old female (allogeneic HCT) adapting to change in cognitive function: “I have done a lot of more home projects like flower arranging…than I did before…and those kinds of things are really good because one of the things that I had so much trouble on was remembering.” |
| Spiritual beliefs | P20, 67-year-old male (allogeneic HCT) adapting to change in psychological function: “I really realized that all the many, many, many hundreds of prayers that were being said for me and continue…God really meant it all for good to me.” |
| Coping Resources | |
| Self-efficacy | Participants described beliefs about their ability to overcome the limitations and adapt. P10, 60-year-old female (allogeneic HCT) adapting to change in physical function: “I wish I had more motivation to do some activities at home. I’m a little afraid to go to a gym because of the people and germs and stuff…I guess I needed somebody to encourage me or to say…you need to do 15 minutes of this exercise a day…, and I didn’t do it because I wasn’t accountable to myself.” |
| Social support | Participants described the role of social support in their recovery process. P10, 60-year-old female (allogeneic HCT) adapting to change in psychological function: “My daughter and son, they visit with the grandkids…it really meant a lot to me…to spend time with them. We would play board games or we would play cards…” |
Figure 1.
Number of participants describing main themes and sub-themes.
Adaptive functioning
All participants described adapting to physical and psychological challenges. Physical limitations included weakness, fatigue, and limitations in strength and balance. Psychological limitations included adjusting to changes in roles and participation (e.g. retirement) and managing uncertainties about health. Five participants (25%) described adjusting to changes in memory and concentration. Eleven (55%) participants described age-related changes in physical and cognitive function as changes requiring adaptation post-HCT.
Coping resources
Eighteen participants (90%) described perceived self-efficacy as a coping resource. Family (19 participants, 95%) and the healthcare team (16 participants, 80%) helped participants overcome physical, psychological and cognitive limitations. Thirteen (65%) participants described friends and the community as resources to assist in coping with post-HCT changes.
Coping strategies
To cope and adapt to physical, psychological, and cognitive changes post-HCT, participants reported using emotion-focused, problem-focused, and meaning-based coping strategies. Ten participants (50%) described using emotion-focused coping strategies. Participants described using four types of problem-focused strategies including engaging in activities (20 participants, 100%), maintaining routines (14 participants, 70%), seeking information (4 participants, 20%), and self-management of health (19 participants, 95%). Participants described using five types of meaning-based coping strategies including benefit finding, goal setting, reappraisal, revising goals, and spiritual beliefs. Eight participants (40%) described benefit-finding including a greater appreciation of life, a changed sense of priorities, and recognition of new possibilities. Six participants (30%) discussed the importance of having short and/or long-term goals to guide the recovery process. Seventeen participants (85%) described reappraisal (i.e. reframing) as a strategy to facilitate positive emotions about a challenge. Ten participants (50%) described revising their goals for their physical and cognitive abilities. Five participants (25%) described religious beliefs as helping them to cope post-HCT.
The relationship between coping resources and adaptive functioning
Figure 2 displays the results of axial coding to determine how specific coping resources may have facilitated adaptive functioning. Participants described the role of self-efficacy and social support in adapting to physical, psychological, and cognitive functioning.
Figure 2:
Axial coding of coping resources used in adaptive functioning.
Self-efficacy
They discussed their belief in their ability to cope and overcome physical and psychological challenges (lack of motivation) . Participant 9, a 67-year-old female (autologous HCT), discussed relying on her own ability to be more active and engage in life activities:
My friend and I used to be together almost all day doing stuff, but we haven’t been doing that. She got sick and then I got sick. It has been more difficult to get back to routine. Just my husband and he’s happy just to be home. He don’t really care about going anywhere or doing anything. It’s just basically up to me. I just got to have the will or want to do it, and that’s it.
Social support
Social support played an important role in the process of returning to life activities. Families provided help with instrumental, leisure, and social activities. Participant 7, a 60-year-old female (autologous HCT), discussed how her spouse offered and set up day-to-day tasks for her and as a result she was able to slowly regain her ability to complete daily tasks.
He’d put it in (dishes), and I took it out…I just got in there and helped as much as I could with what I always did before and he was there all the time.
For participant 5, a 62-year-old female (allogeneic HCT), her son motivated her and walked with her:
It became kind of a game, and he would say ‘well how many laps did you do today’… ‘well, we’re going to walk five tonight’ and then later on…he would say, ‘we’re ending on an odd number, let’s walk a few more’. He just was not satisfied with watching, he was more ‘we’re going to do this’.
Friends and community provided opportunities for participants to engage in social activities to adapt to the psychological challenges (motivation) post-HCT. Participant 5, a 62-year-old female (allogeneic HCT), also described the motivating force of visits from friend and neighbors:
There were so many times I just wanted to sleep. I didn’t want to do anything…I had a lot of friends and neighbors who called me and said ‘I’m coming over to visit’ and it makes you want to be better for their sake because they come in and they’re asking you what you’re doing and you’re thinking ‘I’m sleeping in the chair’.
Participants noted high levels of trust in their healthcare team and described their support in adapting to physical and psychological challenges. Participants 10 and 14 described how the transplant team validated their experiences and provided reassurance to adapt to the psychological challenges (uncertainties).
Participant 10, a 60-year-old female (allogeneic HCT):
While I was in the hospital and being able to touch base with people and ask questions about things that are happening to my body and trying to figure out if it’s normal or not is probably the biggest thing that has helped me get through a lot of things…just feel like that way you don’t feel like you’re alone. I have family and friends, but sometimes it takes another person or an outside person to maybe help you look at things differently or realize your potential or say ‘yeah, it’s okay to do that’… just kind of validate, you can, you’re able to do those things.
Participant 14, a 67-year old male (allogeneic HCT):
The doctors and nurses that have taken care of me and gone through this ordeal with me and got me on the right track and I’m healing up. They’re the most important ones you know.
Our findings reveal that adapting to the physical, psychological, and cognitive challenges within the first year post-HCT is a process requiring resources and strategies that may vary from patient to patient. However, two problem-based strategies (engaging in activities and self-management) and one meaning-based coping strategy (reappraisal) were described by nearly all participants. Social support is central to the process of returning to life activities, particularly adapting to limitations in psychological and physical functioning.
DISCUSSION
Since HCT is increasingly prevalent among adults 60 years of age and older, we sought to describe their experiences in returning to life activities at least three months post-HCT and how coping resources facilitate adaptive functioning. We used the TMSC as a theoretical model to guide the coding process. We found that social support is integral to the coping process and is an important coping resource. In addition, reappraisal, which is a meaning-based coping strategy, is used by nearly all participants to facilitate coping strategies. As a result, we suggest adapting the TMSC framework to include social support and reappraisal as facilitators of problem-focused and emotion-focused strategies used to adapt to life after HCT (Figure 3).
Figure 3.
Returning to life activities schematic diagram.
The post-HCT coping strategies and resources we identified build on prior studies of younger adults undergoing HCT.12–16 Consistent with Walpole et al.16 and Lyons et al.24, we found that the experience of returning to life activities varied based on many factors including the time frame post-HCT, experience of complications and symptoms, and functional limitations commonly seen among HCT survivors. Farsi et al.12,13 identified a variety of coping strategies for adapting to HCT including: denial and avoidance, connection with divine purpose, reliance on health, information seeking, seeking social support, management of side effects, positive thinking, patience and resignation, and changing priorities. However, our study expands the range of documented coping strategies found in the HCT literature of stress and coping because our sample had to cope with aging-related stressors in addition to HCT-related stressors. These aging-related stressors included chronic health conditions, decline in cognitive and physical function and changes in routine and social roles due to retirement.
Participants discussed functional limitations and strategies to overcome challenges related to both HCT and aging. For example, there was a sentiment of “slowing down” and adjusting previous activity preferences and habits due to aging. Participants discussed allowing for more time to complete ordinary activities. They described breaking down a task and interspersing with rest: e.g., yard work and loading dishes. This is consistent with a study that described activity levels in older cancer survivors and their perception about their adjustment to changes in daily activities.25
Most of our participants were retired or were transitioning to retirement. They may have been more aware that having a routine and engaging in activities that are cognitively and physically stimulating is important to the recovery process since they would not be returning to previous jobs. Many participants noted the importance of purposeful activities and responsibilities, such as maintaining a part-time job, volunteer work, or caring for grandchildren post-HCT. Having a routine of social, mental and physical activity helped them to cope with changes in roles and participation.
Our results also provide a rich description of the patient’s experience within his/her social context and identify social support as central to the coping process. Family members provide emotional (expressing affection, love, and companionship) and instrumental support, while the health care team provides esteem (validating patients’ experiences, emotions, and actions) and informational support. Friends and the community provide emotional support through companionship. Participants also relied on social support and meaning-based coping strategies such as reappraisal and revised goals to adapt and cope with psychological (managing uncertainties of illness, change in roles) and cognitive challenges (memory and concentration difficulties). Finally, our results suggest that social support for activities that facilitate adaptation to decline in physical function, may be especially important since this support was described by all participants. This social support is perceived positively when it enhances autonomy: e.g. family members provide motivation to be physically active and structure tasks for participants to maximize independence. One potential explanation for this finding is that older adults may experience more dramatic decline in physical functioning with illness and social support is vital to maintain independence in day-to-day tasks. This finding is consistent with a study that examined the extent to which social support and stressful life events affected long-term physical functioning and emotional well-being of chronically ill patients. Specifically, low levels of social support had a more negative effect for the physical functioning of older patients with chronic illnesses as compared to younger adults. 26
Limitations and Future Research
Our study has limitations. The demographic characteristics of the sample limit the transferability of the results because the sample included mostly older males at a Midwest tertiary transplant center and all patients were Caucasian. Furthermore, it is possible that the individuals who agreed to participate in the study were physically and emotionally healthier than those who chose not to participate, representing a potential selection bias. Our sample also has a low prevalence of anxiety and depression. However, most of the participants have a high comorbidity burden and high prevalence of pre-frailty. Additional studies drawn from samples with more diverse clinical and sociodemographic characteristics are needed, but this study is one of the few to explore the experience of returning to life activities in an older adult population that recently underwent HCT. An additional limitation is the cross-sectional design because the role of social support and self-efficacy may change over time. Specifically, participants may not have accurately recalled how they felt in the earlier phase of transplant as compared to their feelings at the time of the interview. Thus, longitudinal studies are needed to describe the evolution of the roles of social support and self-efficacy over time. However, a strength of our study is that it adds to the literature by describing those who provide social support, the types of social activities in which patients participated, and when the activities occurred.
Clinical Implications
Our results provide community oncologists and PCPs with a context for providing care to older HCT survivors’ during their recovery experience. Specifically, patients receiving HCT at an older age are a high-risk population who may benefit most from targeted health promoting strategies to improve functional status and quality of life throughout survivorship. The TMSC may provide a framework to initiate communication about the facilitators and barriers to returning to life activities. Clinicians may find it helpful to understand the coping resources and strategies preferred by the patient to tailor their support towards engaging in health promoting behaviors. Future studies are needed to understand the association between coping resources, engagement in physical and social activities, and functional outcomes post-HCT. In summary, our research provides a framework of the lived experiences of older adults recovering from HCT and the influential role of social support.
Supplementary Material
ACKNOWLEDGEMENTS
We thank Daina Keehn, MPH for her contribution in the coding process and Weston Ernst, BA for his editorial contribution of this manuscript.
Funding was provided by the Division of Geriatrics, Gerontology, and Palliative Medicine at the University of Nebraska Medical Center.
Footnotes
CONFLICT OF INTEREST
The authors have no conflicts of interest to report.
REFERENCES
- 1.D’Souza A, Zhu X. Current uses and outcomes of hematopoietic cell transplantation (HCT): CIBMTR summary slides, 2016. In:2017. [Google Scholar]
- 2.Costa LJ, Zhang M-J, Zhong X, et al. Trends in utilization and outcomes of autologous transplantation as early therapy for multiple myeloma. Biology of Blood and Marrow Transplantation. 2013;19(11):1615–1624. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 3.Hahn T, McCarthy PL Jr, Hassebroek A, et al. Significant improvement in survival after allogeneic hematopoietic cell transplantation during a period of significantly increased use, older recipient age, and use of unrelated donors. Journal of Clinical Oncology. 2013;31(19):2437. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 4.Majhail NS, Tao L, Bredeson C, et al. Prevalence of hematopoietic cell transplant survivors in the United States. Biology of Blood and Marrow Transplantation. 2013;19(10):1498–1501. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 5.Kopp M, Holzner B, Meraner V, et al. Quality of life in adult hematopoietic cell transplant patients at least 5 yr after treatment: a comparison with healthy controls. European journal of haematology. 2005;74(4):304–308. [DOI] [PubMed] [Google Scholar]
- 6.Pidala J, Anasetti C, Jim H. Health-related quality of life following haematopoietic cell transplantation: patient education, evaluation and intervention. British journal of haematology. 2010;148(3):373–385. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 7.Syrjala KL, Langer SL, Abrams JR, et al. Recovery and long-term function after hematopoietic cell transplantation for leukemia or lymphoma. Jama. 2004;291(19):2335–2343. [DOI] [PubMed] [Google Scholar]
- 8.Khera N, Storer B, Flowers ME, et al. Nonmalignant late effects and compromised functional status in survivors of hematopoietic cell transplantation. Journal of clinical oncology. 2012;30(1):71. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 9.Benish-Weisman M, Wu LM, Weinberger-Litman SL, Redd WH, Duhamel KN, Rini C. Healing stories: narrative characteristics in cancer survivorship narratives and psychological health among hematopoietic stem cell transplant survivors. Palliative & supportive care. 2014;12(4):261–267. [DOI] [PubMed] [Google Scholar]
- 10.Coolbrandt A, Grypdonck MH. Keeping courage during stem cell transplantation: a qualitative research. European Journal of Oncology Nursing. 2010;14(3):218–223. [DOI] [PubMed] [Google Scholar]
- 11.Deckert AL, Gheihman G, Nissim R, et al. The importance of meaningful activity in people living with acute myeloid leukemia. Leukemia research. 2018;67:86–91. [DOI] [PubMed] [Google Scholar]
- 12.Farsi Z, Dehghan Nayeri N, Negarandeh R. Coping strategies of adults with leukemia undergoing hematopoietic stem cell transplantation in Iran: a qualitative study. Nursing & health sciences. 2010;12(4):485–492. [DOI] [PubMed] [Google Scholar]
- 13.Farsi Z, Nayeri ND, Negarandeh R. The coping process in adults with acute leukemia undergoing hematopoietic stem cell transplantation. The journal of nursing research : JNR. 2012;20(2):99–109. [DOI] [PubMed] [Google Scholar]
- 14.Johansson E, Larsen J, Schempp T, Jonsson L, Winterling J. Patients’ goals related to health and function in the first 13 months after allogeneic stem cell transplantation. Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer. 2012;20(9):2025–2032. [DOI] [PubMed] [Google Scholar]
- 15.Niederbacher S, Them C, Pinna A, Vittadello F, Mantovan F. Patients’ quality of life after allogeneic haematopoietic stem cell transplantation: mixed-methods study. Eur J Cancer Care (Engl). 2012;21(4):548–559. [DOI] [PubMed] [Google Scholar]
- 16.Walpole G, Clark H, Dowling M. Myeloma patients’ experiences of haematopoietic stem cell transplant: A qualitative thematic synthesis. European journal of oncology nursing : the official journal of European Oncology Nursing Society. 2018;35:15–21. [DOI] [PubMed] [Google Scholar]
- 17.White LL, Cohen MZ, Berger AM, Kupzyk KA, Bierman PJ. The Meaning of Self-efficacy for Symptom Management in the Acute Phase of Hematopoietic Stem Cell Transplantation. Cancer Nurs. 2019. [DOI] [PubMed] [Google Scholar]
- 18.Lazarus RS. Psychological stress and the coping process. 1966. [Google Scholar]
- 19.Palinkas LA, Horwitz SM, Green CA, Wisdom JP, Duan N, Hoagwood K. Purposeful Sampling for Qualitative Data Collection and Analysis in Mixed Method Implementation Research. Administration and policy in mental health. 2015;42(5):533–544. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 20.Fried LP, Tangen CM, Walston J, et al. Frailty in older adults: evidence for a phenotype. The Journals of Gerontology Series A: Biological Sciences and Medical Sciences. 2001;56(3):M146–M157. [DOI] [PubMed] [Google Scholar]
- 21.Brink TL, Yesavage JA, Lum O, Heersema PH, Adey M, Rose TL. Screening tests for geriatric depression. Clinical gerontologist. 1982;1(1):37–43. [Google Scholar]
- 22.Spitzer RL, Kroenke K, Williams JB, Löwe B. A brief measure for assessing generalized anxiety disorder: the GAD-7. Archives of internal medicine. 2006;166(10):1092–1097. [DOI] [PubMed] [Google Scholar]
- 23.Bradley EH, Curry LA, Devers KJ. Qualitative data analysis for health services research: developing taxonomy, themes, and theory. Health services research. 2007;42(4):1758–1772. [DOI] [PMC free article] [PubMed] [Google Scholar]
- 24.Lyons KD, Hull JG, Root LD, et al. A pilot study of activity engagement in the first six months after stem cell transplantation. Oncology nursing forum. 2011;38(1):75–83. [DOI] [PubMed] [Google Scholar]
- 25.Lyons KD, Lambert LA, Balan S, Hegel MT, Bartels S. Changes in activity levels of older adult cancer survivors. OTJR: Occupation, Participation and Health. 2013;33(1):31–39. [Google Scholar]
- 26.Sherbourne CD, Meredith LS, Rogers W, Ware JE Jr, Social support and stressful life events: age differences in their effects on health-related quality of life among the chronically ill. Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation. 1992;1(4):235–246. [DOI] [PubMed] [Google Scholar]
Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.