Abstract
This review focuses on the economic considerations of pediatric hematopoietic stem cell transplantation from the perspective of the myriad stakeholders: patients and their families; institutions providing care; and employers/payers who are covering its costs. The article is organized by phase of transplant and by component of cost. In addition to referenced peer-reviewed literature, preliminary empirical data are also included with which to understand the cost implications. Areas of future research are identified.
Introduction to Hematopoietic Stem Cell Transplantation (HSCT)
For more than 40 years, HSCT has provided life-saving therapy for children and adults to eradicate disease and restore normal hematopoietic, immunologic, and/or metabolic functioning. The expanded repertoire of HSCT progenitor sources (e.g. bone marrow, peripheral blood, and cord blood), donor types (related versus unrelated; matched versus mismatched), and preparative regimens (e.g. ablative versus non-ablative) has increased access to this therapeutic modality. HSCT now represents the second most frequent major organ transplant in the US for recipients under 21 years of age. In 2009, more than 2600 children received HSCT.Citation1 Furthermore, improvements in supportive care and the control of transplant-related toxicity have led to a steadily increasing survivor cohort.Citation2,Citation3 As a result, this treatment is now a therapeutic option for many patients, including those with life-altering, rather than life-threatening manifestations of selected chronic diseases. It is also an option for patients who could not tolerate the toxicity of traditional approaches, and for intense salvage therapy for those with aggressive disease.
Involvement of Caregivers
HSCT is performed typically in regional specialty centers. The actual site of transplantation is influenced by the nature of the underlying illness and the expertise of the transplant team, ‘in plan’ referrals by insurance carriers, and family preferences. Many recipients receive their transplant care far from home. The HSCT recipient, regardless of age, requires a caregiver, usually a parent in the case of a child, to participate actively in care both during the initial transplant period and for months or years afterwards. Caregivers provide much needed support during the initial hospitalization and are responsible for implementing home-based care and managing the recipient’s treatment regimen and recovery from transplantation. Caregivers also serve as keepers and purveyors of the health care information across care settings, and are at the center of the coordination of care with specialists, subspecialists, other providers in the health care system, and schools.
Illness Experience of the Pediatric HSCT Recipient and the Parental Caregiver
HSCT is a complex treatment that is physiologically and psychologically demanding, not only for the recipient but also for the caregiver. Once a potential donor source is identified, the HSCT candidate undergoes a thorough medical and often psychosocial evaluation to assess readiness for transplantation. Historically, much of the end organ testing and laboratory work was performed at the transplant center. However, more recently, referring physicians have begun to initiate the pre-transplant evaluation.
The HSCT treatment process begins with a prolonged and intensive hospitalization and/or intensive outpatient management at the transplant center. During that time, the recipient is required to adhere to a strict treatment regimen which, for children, is under the direct supervision of the parents. For most of the first year following transplantation, the recipient remains in protective isolation, removed from normal role activities, including school, while attending frequent outpatient visits to monitor bone marrow function and to evaluate and manage complications.
Following the initial hospitalization and recovery period, management of HSCT-related problems may be shared between the transplant specialist and local provider during the first year, and thereafter with the parental caregiver often taking on the role of coordinator of the recipient’s care and serving as the conduit of communication between various health care providers. The precise timing of the return home and the primary management by the referring physician is usually made collaboratively by the family, the transplant team, and the referring physician, and is based on the child’s clinical status and the proximity/experience of the referring physician.
Over time, the recipient and family begin slowly to resume normal activities. The recipient and accompanying parent attempt to re-enter their social environments and re-establish their roles. For the child, this means getting re-acquainted with peers and returning to school, and for parent(s), it means re-establishing family and work life. In studies by our group and others, this return to ‘normal’ occurs during the first 6–12 months following HSCT, but the time trajectories for recovery are not necessarily synchronous and vary between the HSCT recipient and the parental caregiver. A number of factors influence this recovery such as type of transplant, age of the recipient, type and amount of HSCT-related complications (e.g. graft versus host disease), and socioeconomic status.
Cost Implication of HSCT
The cost implications for HSCT recipients and their families vary considerably by clinical and circumstantial factors (e.g. relocation, insurance type and quality of coverage, and family income). The components of cost also vary by phase of treatment and recovery as well as the perspective of analysis. From a societal perspective, the cost components include: hospital costs and professional fees; out of pocket (OOP) medical and living expenses; and productivity costs, principally related to lost income (see ).Citation4,Citation5 In contrast, from an institutional perspective, families’ OOP expenses or productivity costs are rarely considered.Citation6,Citation7
Table 1. Categories and components of cost in hematopoietic stem cell transplantation
Hospital Expenses Drive HSCT Cost
In the US, most HSCT recipients are required to have some form of public or private insurance coverage in the initial peri-transplant period. Occasionally, families without insurance self-pay, requiring the hospital to absorb uncovered costs. Charity care is available in very special cases, although access to free care has been affected negatively by the recent global economic downturn.Citation8 The principal costs for the hospitalization and professional fees are covered typically by insurance.
Previous studies have demonstrated that medical costs vary by transplant typeCitation9–Citation11 with autologous grafts less expensive than allogeneic grafts. Among allogeneic transplants, related donor grafts have been found to be less costly on average than unrelated donor grafts. In a multivariate analysis of factors associated with variation in cost for pediatric allogeneic HSCT during the first 100 days, Majhail and co-workers reported recently that poorer performance status at the time of transplantation and severe post-transplant complications (e.g. graft failure, need for dialysis, and mechanical ventilation) were associated significantly with higher cost.Citation10 The surveillance and management required in cases of complications often results in prolonged initial hospitalization, intensive outpatient management, and/or re-hospitalization.
Resource use also has been shown to vary by progenitor source (peripheral blood stem cells, primed or unprimed collections with hematopoietic growth factors, and purged or unpurged marrow).Citation12 Few studies have compared directly the cost of transplant by both progenitor source and type of preparative regimen (ablative versus Non-ablative). The 2009 study by Majhail et al. reported that the 100-day costs for unrelated umbilical cord blood were higher than related donor grafts, and costs associated with myeloablative regimens higher than non-ablative regimens. Higher costs with umbilical cord blood transplants were explained in large part by delayed neutrophil engraftment and increased likelihood of graft failure.Citation9 Cordonnier and co-workers compared the cost of allogeneic transplantation for patients with acute myeloid leukemia based on intensity of the conditioning regimen. Within the first 6 months following transplant, costs were lower for the patients receiving reduced-intensity conditioning. However, later on (from 6–12 months following transplant), costs were significantly higher in the reduced-intensity group, due to late complications and re-admissions.Citation13 These results highlight the variability in cost over time and argue for the inclusion of 12-month analyses, as proposed by Dr Seber in this issue of the journal.
From an institutional perspective, variation in cost by case mix and clinical outcome can have a dramatic impact on the financial viability of the HSCT program. Negotiated reimbursement rates differ substantially by payer, both in structure of reimbursement and dollar amount, with rates varying by payer (by type and by plan), by site of care (inpatient versus outpatient), and by phase of care (initial hospitalization versus re-admission), even within the first 100 days.
Some payers reimburse on a ‘per case’ basis (such as by diagnostic-related group), while others rely on ‘per diem’ reimbursement. Integrated or bundled payment programs, such as global payments for the entire ‘episode’, require careful negotiation (and accounting), in terms of cost components included, the covered period, and determination of base price and outlier rates by transplant type.Citation11 As care is shared increasingly between the transplant center and the referring physician in both the pre- and post-transplant periods, global pricing contracts also require careful attention to the mechanisms for distribution of payments by site of care.
Reimbursement rates also vary by type of insurance: public versus private. Public programs, such as Medicaid/Medicare or the Children’s Health Insurance Program, reimburse typically at a lower rate than commercial insurance. Historically, given the age requirements for HSCT (‘physiologic 50’), few transplants were covered by Medicare. However, in light of changing indications for HSCT and the availability of reduced-intensity conditioning, there has been a dramatic increase in the number of transplants performed among patients 65 years and older. Summary data from 2009 demonstrate that the leading indication for HSCT among adults is multiple myeloma.Citation1 These changing indications will have important economic implications for transplantation in the US with Medicare becoming a major payer.
Efforts to Control Hospital Costs
For more than a decade, HSCT programs have explored alternative strategies to control hospital costs, including outpatient conditioning and delayed admission,Citation14,Citation15 early hospital discharge followed by intensive outpatient management,Citation16 and finally, outpatient-based transplants.Citation17 Peters and co-workers enumerated several important aspects of early hospital discharge, including the availability of a 7-days-per-week clinic for rapid assessment and intervention, dedicated staff, availability of outpatient accommodation, and special arrangements for emergency re-hospitalization. Specifically, in this model, inpatient beds were ‘held’ for potential re-admission, although the marginal cost of holding beds in terms of lost revenue was not delineated.Citation16 In the Rizzo study, a 34% reduction in total charges was reported for outpatient HSCT as compared to traditional inpatient-based care. However, the reduction in inpatient charges was offset by increases in charges within outpatient facilities. One important caveat in this study was insurers’ agreement a priori to cover outpatient-based expenses, including a small daily living allowance.Citation17
OOP Expenses
While dwarfed in comparison with the cost of the hospitalization, OOP expenses represent another substantial component of cost for families that are not captured routinely by the transplant center. These expenses can be related directly to the medical care [such as temporary lodging, incidental living expenses (food, alternative childcare, and transportation)], and co-payments for medications and supplies,Citation18 or may reflect the impact of the child’s illness on family lifestyle, including increased debt, inability to pay bills, limited investment, and altered participation in social activities (e.g. vacations or discretionary spending).Citation19 Several studies, however, have demonstrated that this information can be collected reliably from families, using cost diaries or surveys (Majhail, personal communication, 6 January 2012).Citation20–Citation22 OOP expenses related to medical care vary considerably. In a 2006 study by Meehan et al. of adult recipients of autologous transplant, higher OOP expenses were incurred by families who had relocated for transplant (i.e. those living distant from the transplant site) and required temporary lodging.Citation20 Geographic distance from the transplant center (and resultant relocation) was also found by Cohn et al. to be associated with higher OOP expenses, principally in the domains of travel, accommodation, and communication costs.Citation19
Families in the US do not have access to government subsidies or supplemental insurance to cover many of these expenses, thereby amplifying the burden of OOP expenses. While some families have prescription drug benefits, which help defray the cost of medications, other financial assistance to cover OOP costs comes from institutional funds and/or personal fund-raising. One of the most alarming aspects of OOP expenditure is the regressive nature of these costs, as demonstrated in several national surveys over the past three decades.Citation23–Citation25 To highlight this, the 1999 and 2000 National Medical Expenditure Survey demonstrated that lower income families of children with disabilities were 19 times more likely than higher income families to have OOP expenditures exceeding 5% of the family’s income.Citation26 Increased OOP expenditures have pernicious effects on clinical decision-making,Citation6 care-seeking, and the marginal costs of delaying needed care.
Role Disruption for Parental Caregivers
The financial consequences of HSCT on the family require further evaluation in terms of lost income which, like OOP expenses, is often not part of the institutional perspective. Previous studies of families of children with cancer have shown that 40–63% lost income as a result of reduced work.Citation27 In a 2008 pilot study of newly diagnosed children with cancer, factors associated with cutting back on work included younger children, parental gender (mothers more than fathers), the child’s diagnosis, and the child’s clinical status (palliative care versus curative treatment).Citation27 The implications of cutting back on work are manifold, including lost income, loss of health insurance (or greater co-pays due to reduced work hours), and less flexibility due to consumption of benefits (sick time, vacation time, or personal leave). This means that even when the parent(s) return to work, they may be constrained in terms of being able to take time off for clinic visits or unscheduled re-admissions. In a sobering study by Miedema and co-workers, in which semi-structured interviews were conducted with families of children with cancer, reports of being unable to use sick time benefits were reported, which for some families forced them to cut back or stop work.Citation28
Among those who remain employed during the child’s treatment, few studies have addressed the impact of caregiving on absenteeism or presenteeism (altered productivity at work). In a 2004 study by Burton et al., in which the eight-item version of the Work Limitations QuestionnaireCitation29 was used among caregivers (but not restricted to cancer or HSCT), caregiving was found to have a direct impact on both of these factors: absenteeism and presenteeism.Citation30
Preliminary Data on HSCT from the Journeys to Recovery Study
We explored some of these economic considerations in an observational study of pediatric HSCT recipients and their families at six transplant centers in the US. In the study, described elsewhere as the ‘Journeys to Recovery Study’, (Journeys Study)Citation31 consecutive HSCT candidates were screened prior to transplant to determine eligibility and interest in study participation. From 2003 to 2006, 165 English-speaking children 5–18 years and their parents were enrolled, each of whom completed serial assessments prior to and following the first 12 months after HSCT. The primary purpose of the study was to describe the 12-month health-related quality of life trajectories of pediatric HSCT recipients, as reported by both the child and parent, using age- and rater-specific versions of the Child Health Ratings Inventories.Citation32–Citation35
Study measures
In addition to health-related quality of life assessments, parents completed demographic information at study entry on insurance type, job status, and household income. At baseline and again at 12 months, parents also completed several items from the National Survey of Children with Special Healthcare Needs (‘Special Healthcare Needs Survey’), including adequacy of health insurance, level of OOP expenses over the prior 12 months, and the frequency with which the child’s medical condition had caused financial problems for the family. These results were compared with those from the 2005–2006 national survey, which had been conducted in 40 804 US households with children with special healthcare needs to put our results in some context.Citation36 Finally, to understand the potential impact of HSCT on parental job status, parents also completed the Family Inventory of Life Events,Citation37 a 71-item checklist of life events, including those on work transitions. The number of ‘yes’ responses is summed; higher scores indicate greater number of stressful events. The Family Inventory of Life Events has been used in longitudinal studies of family adaptation to medical illness.Citation38Citation,39 Internal consistency and test-retest reliability, as well as construct and predictive reliability, have been favourable.Citation37,Citation38
Results
Approximately half (49·7%) of the pediatric HSCT recipients received unrelated donor transplants and a comparable proportion was relocated geographically for transplantation. Most of the parental participants were mothers (84·2%) with a median age of 39 years (range, 26–59 years). The majority were married or living with a partner (76·4%). At the time of transplant, 60·4% reported that they were not working outside the home, whereas 75% of their spouses were. Median annual household income was ∼$60 000. Insurance status was known for 96% of the participants: the majority had private insurance (61·2%), while the remainder had public insurance. Insurance coverage was described as ‘always’ meeting the family’s needs in the minority, both at the time of transplant (44·4%) and at 12 months thereafter (48·1%).
Despite having health insurance to cover the direct medical costs of transplantation, 44% of participants spent more than $1000 in OOP expenditures in the year prior to transplant. By 12 months after the procedure, 59% of families reported that level of expenditure, and 28% of families spent >$5000. This compares to 20% among respondents of the Special Healthcare Needs Survey.Citation36 Approximately 60% of parents reported at both baseline and at 12 months that the child’s health condition had caused financial problems for the family. This is in striking contrast to the Special Healthcare Needs Survey in which only 18·1% reported experiencing financial burden due to the child’s condition,Citation36 which likely reflects the intensity and acuity of the first year post-transplant in comparison with other chronic conditions of childhood.
Parental role disruption was evident through the first year following HSCT. By 12 months after transplant, 79·4% of families reported having cut down or stopped working because of the child’s health condition. By comparison, in the Special Healthcare Survey, only 23·8% of parents reported cutting back or stopping work over the prior year, although the impact increases dramatically, based on the severity of the child’s condition (up to 47% stop work or cut back).Citation36
Of note, among those who stopped work because of the child’s transplant, 52% reported having started work again by 12 months. However, further research is needed to understand the full magnitude of this role disruption in terms of ongoing and intermittent absenteeism, as well as presenteeism.
Summary
HSCT recipients and their families are extremely vulnerable during the transplant process; a stressful clinical treatment made even more so by issues related to geographic dislocation, physical and social isolation, duration of treatment and treatment impact, and burden on the parental caregiver to coordinate care, execute a complex medical regimen, and sustain prolonged role disruption. The cost implications are also manifold for the families receiving care, the institutions providing the care, and the payers and employers covering its cost.
Further research is needed to understand more completely the economic consequences of altered functioning for the parental caregiver in the work place (productivity cost) and the magnitude of OOP expenses, even among the fully insured. Most assuredly, given the rapid growth of transplant and the growing proportion covered by government payers (Medicaid and Medicare), greater scrutiny will be placed on the totality of the cost of care.
Appendix: Participating institutions and site investigators in the Journeys to Recovery Study
Central project staff
Tufts Medical Center, Boston, MA: Susan K. Parsons, MD, MRP, Principal Investigator
Brigham and Women’s Hospital, Boston, MA: Grace Chang, MD, MPH, Co-Investigator
Site principal investigators
Baylor College of Medicine/Texas Children’s Hospital, Houston, TX: Lynette Harris, PhD and Robert A. Krance, MD, Principal Investigators
City of Hope, Duarte, CA: Sunita Patel, PhD, Principal Investigator; Joseph Rosenthal, MD, Site Consultant
Dana-Farber Cancer Institute, Boston, MA: Christopher Recklitis, PhD, MPH, Principal Investigator
Fred Hutchinson Cancer Research Center, Seattle, WA: Karen L. Syrjala, PhD, Principal Investigator; Jean Sanders, MD, Co-Principal Investigator
Medical College of Wisconsin, Milwaukee, WI: Mary Jo Kupst, PhD, Principal Investigator; Kristin Bingen, PhD; James Casper, MD, Co-Principal Investigators
University of Pittsburgh/Children’s Hospital of Pittsburgh, Pittsburgh, PA: Robert B. Noll, PhD, Principal Investigator; Linda J. Ewing, PhD, RN, Co-Principal Investigator
This study was supported by funding from the American Cancer Society (Research Scholars Grant RSGPB-02-186-01-PBP: Parsons) and the National Cancer Institute (5R01196119: Parsons).
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