Allogeneic hematopoietic cell transplantation (alloHCT) may be the only curative option for some older adults with hematologic malignancies, and its associated risks of significant morbidity and mortality warrant a clear, informed decision-making process. As older adults have not been transplanted routinely until recent years, younger people have been the prototypical group around whom the current process has developed. Yet, this process is applied to older adults who have different considerations than younger patients when making their transplant decision. Older adults do not have the open-ended lives of younger patients and are entitled to consider how to spend their remaining time. They also possess maturity and experience, and with proper knowledge, they can make informed choices rather than moving forward in the transplant process unaware. Notably, older patients face similar problems with the informed decision-making process in nephrology. Strategies such as providing education about alloHCT gradually and repeatedly during induction, presenting recent knowledge from the literature in plain language, and utilizing a team approach to patient education may help older adults make the best decision about transplant in light of their situation and values. Understanding when and how older adults decide on alloHCT is an important first step to further exploring this problem.
Hematologic malignancies, including AML, myelodysplastic syndrome and ALL are more prevalent and biologically more aggressive in older adults than in any other age group (Table 1).1, 2, 3, 4, 5 For these cancers, treatment options that can be used to prolong their lives include allogeneic hematopoietic cell transplantation (alloHCT). AlloHCT may be the only curative option and its associated risks of significant morbidity and mortality warrant a clear, informed decision-making process.
Although bias exists against treating older patients aggressively, studies suggest (although there is no prospective comparison between alloHCT and other consolidation treatments) alloHCT improves their survival.6, 7 Consequently, alloHCT is increasingly being selected as a treatment option for this age group (Figure 1)8 which by the year 2030, may comprise 25% of all survivors.9 As the general population ages, greater numbers of older adults will face the decision to undergo a transplant. Increasingly, treating oncologists will face the decision to refer their older patients for alloHCT, and transplant physicians will face the decision whether or not to proceed with transplant. To this point, Table 1 shows the incidence and 5-year relative survival rates for acute leukemias and common cancers by age group. Given that the 5-year relative survival for adults diagnosed with AML between ages 65 and 74 is only 11.5%, careful attention should be paid to helping them make an informed decision about treatment that will entail consequences for the remaining time they have.
Differences in decision considerations between younger and older patients
Young patients who are contemplating a long and productive future have one set of criteria, and older adults looking into their golden years typically have another. Building a family, career and socio-economic equity for the future mainly affect younger patients and are irrelevant without longevity. So for them, transplant is the more obvious decision, and studies suggest they decide on transplant before the first hematopoietic cell transplantation (HCT) consultation.10, 11 Most older adults, on the other hand, have done the major things they have set out to do in life. Some older patients may want to try every aggressive therapy available; but for most, the choice whether or not to proceed to alloHCT is complex relative to a younger patient population. Table 2 summarizes and contrasts how considerations change as patients age. However, this paper does not focus on comparing older and younger patients but aims to outline problems older people have within the current system.
Patients often feel like there is no choice about going to transplant.12 They see the decision as either choosing life (transplant) or choosing death (no transplant). From diagnosis onward, health-care professionals may subtly or not so subtly give the message that the goal is the potentially curative option of transplant. Instead the goal could be to empower a patient to make an informed choice about their treatment plan in light of their situation and values.
The considerations of older adults
Patients wonder whether they are ‘too old’ for transplant. Although age is a factor, research has shown that co-morbidities and performance status are stronger predictors of survival than age.13, 14, 15, 16 Wedding et al. found that impairment of instrumental activities of daily living was the single most predictive variable of survival in their sample of AML patients ages 19–85 years (median 61.1).13 The ability to perform tasks necessary to live independently in the community, that is, shopping, food preparation, housekeeping, laundry, transportation, handling finances and medication bears most importantly on the survival of older adults. Muffly et al.15 found that the presence of slow walking speed and low mental health before transplant also have prognostic value for poorer survival. Finally, older age and GvHD are principal risk factors for non-relapse death and late death; and even when alloHCT is successful, life expectancy is still lower than expected.17
Patients often report cognitive problems after transplant, and research has shown these problems contribute to higher levels of distress and lower quality of life (QOL).18, 19, 20 Booth-Jones et al.18 found that while younger patients made more subjective cognitive complaints, older patients were more likely to score in the impaired range on objective cognitive tests. Notably, 81% of their sample received autologous HCT and 19% received alloHCT. Syrjala et al.21 found that 41.5% of patients had mild or greater (mostly mild) cognitive impairment 5 years post-alloHCT compared with 19.7% of matched controls. Studies on cognitive changes generally include a large age range and samples of either autologous and alloHCT patients,18, 20, 22 or only patients receiving myeloablative alloHCT.21, 23, 24 To our knowledge, the impact of non-myeloablative alloHCT on cognitive functioning in older adults is not known.
A patient’s social support system is a vital element of a successful HCT process. In assessing the effect of social support on the 2-year survival of AML patients, Pinquart et al. concluded that social support is relevant to decreased mortality.25 Most centers require patients to have a 24/7 caregiver for a minimum of 3 months after transplant. Therefore, questions that bear on treatment include: is there a caregiver available? Among older adults, the patient may already be providing care to a spouse or partner. If so, is there caregiver support for them both? Overall, is adequate psychosocial support available for an intensive, sometimes prolonged, treatment course?
The financial side effects of costly cancer treatment are attracting increasing attention in the literature.26, 27, 28 As many live on fixed incomes, financial matters are a real concern for older adults considering alloHCT. These include insurance coverage, medication copays and out-of-pocket costs for transportation and relocation, among others. Opportunities to increase their baseline household income after treatment are likely more limited relative to younger patients. Furthermore, older patients may consider leaving inheritance for their family vs spending their savings on cancer treatment.
Khera et al.26 studied the financial burden of alloHCT and its impact on patients’ health behaviors. Of the 268 survey respondents, 73% reported subjective financial burden related to their illness. Concern about medical cost precipitated harmful health behaviors in one-third of the study population; those who were retired were more likely to exhibit treatment noncompliance due to financial reasons. In their study of 1556 cancer survivors, Kent et al.29 concluded that those who reported cancer-related financial problems were more likely to report delaying medical care (18.1 vs 7.4%; P<0.0001) or forgoing medical care (13.5 vs 5.1%; P<0.0001) and prescription medications (13.8 vs 7.7%; P=0.001) than those without financial problems.29 Arora et al.30 found that patients with low income were over three times as likely to report frailty after transplant.23 Therefore, financial stress negatively impacts patients’ long-term health and ongoing treatment decisions.
From a functional and psychosocial standpoint, alloHCT is a taxing therapy that can take a toll on a patient’s QOL. In a study by Sekeres et al., 97% of AML and myelodysplastic syndrome patients age 60 and older reported that QOL was more important to them than length of life.31 A review article by Pidala et al.32 found that older age, advanced disease at transplant, chronic GvHD, lower functional status and less social support were predictors of poorer QOL post-HCT. In contrast, Hamilton et al.33 found that older survivors achieved comparable QOL to younger survivors.
Studies generally agree that recovery after alloHCT takes years and that physical recovery occurs more quickly than psychological recovery.34, 35 An estimated 43% of survivors experience clinically significant psychological distress,19 and 5–13% exhibit symptoms of post-traumatic stress disorder.36, 37 Furthermore, Lee et al. found a statistically significant association between psychosocial distress and medication noncompliance.38
Survivors with chronic GvHD report significantly lower QOL when compared with age- and sex-matched normative data,39 are three times as likely to report frailty as the general population, are at risk for accelerated aging and require more frequent medical visits to manage their morbidity.30 In contrast, Deschler et al.40 found that a sample of 160 older adults (⩾60) receiving reduced-intensity conditioning alloHCT evaluated their global QOL as good or excellent post-transplant.
To explain the high ratings among survivors with objective impairments, it has been suggested that they may evaluate their QOL favorably in comparison with much poorer quality during treatment. Also, for survivors, QOL may simply mean that they are alive.35, 41 In a focus group study, patients and caregivers agreed presenting a range of possible QOL outcomes was an important part of the decision process. Although the majority indicated additional information would not have changed their decision, some participants reported they would have decided against transplant if they had known their caregiver’s and their own QOL outcome.41
Sources of information before HCT
HCT team members possess the most critical information patients need to know. However, patients have very limited access to information directly from the HCT team during induction. Instead, they may receive information from various sources including their referring oncologist, oncology ward staff, the Internet, family members, friends and publications from patient advocacy organizations. The quality of information from these sources can range from precise to inaccurate or uninformative.42 Some patients find it helpful to speak with a peer who has gone through transplant.41 The survivor can share their experience and what helped them. However, it must be acknowledged that these survivors are a biased sample, as they are the ones with the best outcomes, not the ones who died or who live with significant morbidity.
Information about transplant for their specific case is provided during a consultation with a transplant physician. During this visit, medical information regarding the general process, donor sources, specific protocol, timeline, risks, benefits and outcomes is presented. At some centers, the social worker also meets with the patient/family to provide information about psychosocial needs. All of this is typically presented after induction, when the patient has attained remission and needs to move to transplant quickly. At this point, their cognitive abilities are altered by chemotherapy, they are still adjusting to a new, life-threatening diagnosis and they may not even know what questions to ask. Older adults have more difficulty processing and remembering new information; they benefit from having it repeated.43 Some also benefit from having questions suggested to them.43, 44
The language and concepts of alloHCT are complex and unfamiliar, and the information presented is a great deal to grasp during one session. Low health literacy and high emotions impede the understanding of information. Demands on providers limit the time they can spend with any one patient,45 and what the physician communicates and what the patient hears and remembers can differ greatly.11, 31, 46, 47 Furthermore, physician training has historically not included communication skills, though this may be beginning to change.45 It is a challenging setting for clear dialogue between the patient/family and the members of their treatment team.
Risks and outcomes are often presented in statistical terms that patients have difficulty understanding and relating to their particular case.48 For example, Sekeres et al.31 found that patients tend to overestimate their chances for cure as well as 1-year survival, and Pisu et al.11 reported patients recalled a lower mortality risk than communicated by their physicians. In general, patients want to know their chances of survival, but the population’s median mortality statistic is not the reality for any individual patient. This is difficult to grasp for many patients and requires careful explanation.49 Risk and outcome statistics need to be translated into useful knowledge for the patient. Perhaps most relevant for patients are (1) where they are most likely to land on the survival curve, given their risk factors and (2) what can they do to ensure their best chances of landing in the extended tail of the curve?50
Older patients with other diseases: decision making in nephrology
Although we use aggressive hematological malignancies (AML, myelodysplastic syndrome and ALL) as a model to highlight problems older adults face when making an alloHCT decision, older patients with other illnesses also face these problems in the medical system. For example, nephrology literature highlights similar themes with older adults facing decisions about dialysis and kidney transplantation.51, 52, 53, 54, 55, 56 The incidence of end stage renal disease is increasing more quickly among older adults than any other age group and is associated with a low QOL and high mortality.51 Given this trend, nephrology practice guidelines were developed to promote patients’ active participation in the decision-making process.56
Multiple studies suggest that patients with chronic kidney disease may not receive adequate information to inform their treatment choices.57, 58, 59 Information about treatment options is often provided to patients after vascular access is created (for one-third of patients, after dialysis has commenced), a timing problem that seems to strongly influence the choice of hemodialysis over other options.60
Morton et al.60 suggest that understanding the factors that influence decision making can help inform patient education programs and enhance communication among providers, patients and families. They conducted thematic analysis of 18 studies and discovered four themes central to nephrology patients’ treatment decisions: confronting mortality (choosing life or death); lack of choice (lack of information); gaining knowledge of options (peer influence and timing of information); and weighing alternatives (maintaining lifestyle and family influences).60
What can be done?
Increase duration of time of learning
How can an HCT team help maximize their patient’s ability to make an informed choice? In a thorough discussion, D’Souza et al.12 captured many pitfalls in the current HCT informed consent process and concluded that new avenues should be sought to help patients make an informed decision. They suggested opportunities for improvement including the use of interactive technology, consideration about what information is actually meaningful for the patient’s decision and enhancement of the consent forms. They also provided an example of a consent process that includes two physician visits before the consent visit, with the transplant coordinator available in between to help reinforce information.12
There is little time between diagnosis and transplant; therefore, it has been suggested that an effective decision-making collaboration among patients, treating oncologists and transplant physicians starts immediately after diagnosis.6 This collaboration may also include geriatricians and palliative care physicians. On the basis of Posma et al.'s43 work, older adults considering transplant may benefit from receiving information in a step-by-step manner throughout induction. This approach is also supported by evidence that patients with chronic kidney disease and their families preferred to receive information about treatment options as early as possible in order to absorb it and adjust to the approaching treatment, regardless of whether or not they chose home hemodialysis or palliative care.60
Finally, a study of AML patients by Bertoli et al.61 showed that the time from diagnosis to initiation of intensive chemotherapy (median 8 days, interquartile range 4–16 days) had no impact on overall survival, response rate or early death. Therefore, it may behove older adults to wait for testing that can inform targeted and more tolerable therapy options in patients who are not critically ill.61
A large volume of information about HCT is available from various sources, and older adults may benefit from assistance to narrow down what is actually meaningful for their decision.12, 43 Patients rely on their team members to share in plain language the knowledge that bears on their treatment decision. This should include knowledge from the most recent literature that pertains to their individual medical/psychosocial situation, rather than following the only protocol that may result in a cure. Alternative options with less burden than alloHCT are reasonable for older adults and need to be presented as such.45 These options include supportive therapy (transfusions, antibiotics as needed, easily administered oral medications, SC injections at home or less frequent IV chemotherapies). Medicine needs to progress quickly to better understand outcomes in older adults.
Some geriatric assessment measures may have prognostic value for older patients facing HCT and may be useful for patient selection.15 The results could also be used to inform patients selecting their treatment option. Geriatric assessment tools are designed to evaluate an older person’s functional ability, physical health, cognition, mental health and socioenvironmental circumstances.62 They can include activities of daily living, instrumental activities of daily living, walking speed, chair rise test, frailty testing, cognitive testing, falls assessment, depression screening and nutritional assessment. The geriatrician’s assessment can inform the development of the treatment plan and aid meaningful conversations between clinicians, patients and families.62, 63, 64
Increasing the patient’s access to the HCT team members during induction may benefit their decision-making process. Team members including the physician, nurse coordinator, nurse on the inpatient HCT ward, social worker, pharmacist and financial case manager have specific knowledge that bears on older adults’ functional, psychosocial, financial and QOL considerations. This team approach to educating the patient has been suggested for cancer, surgical and dialysis patients as well as for a general patient education protocol.45, 65, 66, 67 In addition, web-based programs,12, 45 Q&A groups, and other formats could be used to present the information. In partnership with three transplant centers, the National Marrow Donor Program/Be the Match is conducting a qualitative study to identify HCT-related information needs and learning preferences for older adult patients and their caregivers.
Providing education in a way that facilitates an older adult’s transplant decision is a paradigm shift from the current informed consent model and would require staff education. Table 3 summarizes problems with the current system and suggests solutions. Some of these solutions may also benefit older adults considering autologous transplant, even though the risks of morbidity and mortality are much lower.
Some patients (regardless of age) prefer to have less information and let their physician guide the decision.12, 43, 44 Even so, their preference for information may change, so it is necessary to check-in with them along the way.45 Most patients may ultimately base their decision on emotional and intuitive factors, and not on a rational consideration of risks, benefits and other objective factors.10 Even so, the HCT team needs to do their utmost to educate patients, engage them in dialogue and honor their right to choose.
Discover when and how older adults decide
We know almost nothing about older adults’ personal decision-making processes as they follow a trajectory of induced remission on to transplant. Furthermore, we don’t know when it is they actually decide. In order to provide quality care to older adults, it is essential to understand the patient within the process. What considerations (QOL, psychosocial and financial) weigh on their minds? When are they less certain and more certain about going to transplant? To what extent do they utilize intuition, statistics, input from family or other ways of knowing: how do they arrive at their decision? What helps them during the consideration phase, and why do they make the decision they do?
A study can be designed to let the patient tell us about their state of mind and receptivity to information during induction and up to transplant. These likely evolve over time and/or differ with phases of treatment, so tracking the progression of the sample over time would be important. Two key questions arise: (1) what is the patient’s process; and (2) when do they decide. The answers guide the presentation of information by the HCT team and may inform novel solutions to improve the current system.
Patients want messages of hope from their physicians, and reality for patients considering alloHCT is usually frightening. Consequently, the system tends to protect the patient from potentially upsetting information about the therapy.12 Nevertheless, with proper knowledge, older adults can make informed choices rather than moving forward in the process unaware, hoping they will come out the other side well, and potentially living with regret if the other side is nothing like they thought it would be.
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The authors declare no conflict of interest.
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Randall, J., Keven, K., Atli, T. et al. Process of allogeneic hematopoietic cell transplantation decision making for older adults. Bone Marrow Transplant 51, 623–628 (2016) doi:10.1038/bmt.2015.241
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