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How Should We Design Supportive Cancer Care? The Patient's Perspective

David Casarett, Jessica Fishman, Peter J. O'Dwyer, Frances K. Barg, Mary Naylor, David A. Asch

From the VA Center for Health Equity Research and Promotion, the Leonard Davis Institute of Health Economics, and the University of Pennsylvania Schools of Medicine and Nursing, Philadelphia, PA

Corresponding author: David Casarett, MD, University of Pennsylvania, 3615 Chestnut St, Philadelphia, PA 19104; e-mail: casarett{at}mail.med.upenn.edu

	ABSTRACT

TOP ABSTRACT INTRODUCTION PATIENTS AND METHODS RESULTS DISCUSSION AUTHORS' DISCLOSURES OF... AUTHOR CONTRIBUTIONS Appendix REFERENCES

 
Purpose Hospice services are designed to meet the needs of patients near the end of life. Although so-called open-access hospice programs and bridge programs are beginning to offer these services to patients who are still receiving treatment, it is not known whether they best meet patients’ needs.

Patients and Methods Three hundred adult patients receiving treatment for cancer completed interviews in which each patient's value or ability for supportive care services were calculated from the choices that they made among combinations of those services. Preferences for five traditional hospice services and six alternative supportive care services were measured, and patients were followed up for 6 months or until death.

Results Patients’ utilities for alternative services were higher than those for traditional hospice services (0.53 v 0.39; sign-rank test P < .001). Alternative services were also preferred among patients with poor functional status (Eastern Cooperative Oncology Group performance score > 2; n = 54; 0.65 v 0.48; P < .001) and among those who were in the last 6 months of life (0.68 v 0.56; sign-rank test P = .003). Even patients who were willing to forgo cancer treatment (n = 38; 13%) preferred alternative services (3.1 v 1.8; P < .001).

Conclusion Patients who are receiving active treatment for cancer, and even those who are willing to stop treatment, express a clear preference for alternative supportive care services over traditional hospice services. Supportive care programs for patients with advanced cancer should reconsider the services that they offer and might seek to include novel services in addition to, or perhaps instead of, traditional hospice services.

	INTRODUCTION

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Patients with cancer have substantial needs for care from diagnosis through the end of life.^1-8 Their family caregivers, too, face considerable emotional, financial, and time burdens^9-13 and demanding caregiving roles.^6-8,14-16,17 Although hospice offers services that are designed to meet these needs, Medicare requires that hospice patients have a prognosis of 6 months or less if their disease runs its usual course and that they forgo life-sustaining treatment.¹⁸ As a result, many patients with cancer do not enroll in hospice or they enroll in the last days of life.¹⁹

Therefore, there is growing enthusiasm for programs that would provide some or all hospice services to patients before they would be eligible for hospice under the Medicare Hospice Benefit. One example is a so-called open-access hospice program that enrolls patients with a prognosis of 6 months or less. These programs let patients receive the full range of hospice services as well as selected life-sustaining treatments.²⁰ Another is a bridge program that also enrolls patients with a limited prognosis (generally between 6 and 12 months).²¹ Bridge programs only provide selected hospice services but do not impose limits on the use of life-sustaining treatment. Open-access programs are funded in the same way that other hospice care is funded (ie, through the Medicare Hospice Benefit), whereas bridge programs are funded as home health programs and typically require that patients have a need for skilled nursing care.

It is not known whether the services that these programs offer—a visiting nurse, home health aide, chaplain, respite care, and a counselor—best meet the needs of their patients. It is important to determine which services these patients value, because funding for open-access and bridge programs is limited. These programs cannot rely on the Medicare Hospice Benefit and must also use grants or other revenue streams, which requires that they make difficult choices about the services that they can afford to offer. In other situations that involve limited resources, patients’ preferences have proven to be useful in designing emergency services,²² vascular surgery programs,²³ inpatient services,²⁴ and adolescent health intervention programs.²⁵ Therefore, the goal of this study was to determine which services would be most valuable to patients with advanced cancer, so that supportive home care programs can be designed to better suit patients’ needs.

	PATIENTS AND METHODS

TOP ABSTRACT INTRODUCTION PATIENTS AND METHODS RESULTS DISCUSSION AUTHORS' DISCLOSURES OF... AUTHOR CONTRIBUTIONS Appendix REFERENCES

 
Setting and Sample
Patients were recruited over 18 months from six oncology clinics within the University of Pennsylvania Clinical Cancer Center Network. Patients were eligible if they had clinical or radiologic evidence of active disease, if they were receiving chemotherapy or radiation therapy, and if their oncologist believed that they would have a life expectancy of 6 months or less without cancer-directed treatment. These patients therefore met the prognostic eligibility criterion for hospice, which requires that patients have a prognosis of 6 months or less if their disease runs its usual course.¹⁸ Nursing staff at each site assisted a rotating team of three interviewers to identify and approach eligible patients from each day's clinic list.

Overview of Preference Assessment Methods
Preferences for services were assessed using techniques of conjoint analysis, a process by which study participants make choices about goods or services by considering attributes jointly.²⁶ There are two key advantages to using conjoint techniques rather than direct ratings to ascertain patients’ preferences about services. One conceptual advantage is that patients consider each service in the context of others, making choices more natural. Second, unlike direct rating tasks that often suffer from ceiling effects, in conjoint tasks, patients must choose those services that are most important.

These techniques were developed for use in marketing²⁶ and have been used increasingly to answer questions about health care preferences.^22-24,27-31 Their validity, reliability, and predictive power are well-established.^32,33 This study used Sawtooth Software's Adaptive Conjoint Analysis package (ACA for Windows, version 4.10; Sawtooth Software, Sequim, WA), which is a hybrid^34-36 conjoint method that uses an interactive self-administered computer program to decrease respondent burden while preserving the psychometric advantages of conjoint techniques.

Data Collection
After providing informed consent, patients completed interviews using Tablet PCs. First, they provided basic demographic and clinical data, including household finances (money available at the end of the month).³⁷ Next, they reviewed descriptions of 11 supportive care services in a brochure format (Appendix, online only). Five of these services are offered by hospice programs as required by the Medicare Hospice Benefit: a visiting nurse, a chaplain, a home health aide, a counselor, and respite care.¹⁸ These services were selected based on the results of previous research that identified them as among the most valued by patients near the end of life.^37,38 We also included six services that are not defined in the Medicare Hospice benefit, but which we hypothesized might also be useful to patients with advanced cancer: a nurse case manager, a voucher that would allow patients to purchase home care services from a family member or neighbor, a meal delivery program, transportation to medical appointments, care for dependents (children and adult parents), and peer support. The final set of services was based on the results of prior pilot testing with 40 patients to ensure that descriptions were easily understandable to patients.

After patients reviewed all 11 services, they completed the Adaptive Conjoint Analysis (ACA) portion of the interview. First, they rated the importance of each service on a scale from 0 (not at all important) to 7 (extremely important). Second, they evaluated pairs of programs displayed side by side, each containing two or three services, and rated their preference on a scale of 1 to 9 (1 = "strongly prefer the program on the left"; 5 = "indifferent"; 9 = "strongly prefer the program on the right"). The services described in each of these pairs are selected by ACA during the course of the interview to reflect options that are nearly orthogonal (ie, those whose values are as balanced as possible, based on that patient's previous responses). Patients also made choices among holdout sets of programs that were used to test the predictive validity of calculated utilities. Throughout the conjoint tasks, interviewers assisted patients in selecting responses and responded to questions as needed.

Next, patients were asked whether they would want to continue receiving their current cancer treatment to achieve various probabilities of surviving for 6 months (almost 100%, 90% to 99%, 50% to 89%, 10% to 49%, 1% to 9%, and almost 0%).^40,41 These probabilities were varied systematically (from lowest to highest and then back to the second-lowest) to balance order effects. Those patients who would not want treatment even for an almost 100% chance of 6-month survival would have been eligible for hospice.

Finally, patients completed the Global Distress Index (GDI) of the Memorial Symptom Assessment Scale,⁴² the Functional Assessment of Cancer Therapy-General),⁴³ the Medical Outcomes Survey Social Support Scale,⁴⁴ and an assessment of basic and instrumental activities of daily living.^45,46 Patients were followed for up to 6 months using regular updates from their oncologist and/or staff to identify those who had died.

Data Analysis
On the basis of patients’ direct ratings and their choices among combinations of services, ACA uses least squares regression to calculate a β coefficient that is the utility, or value that each patient places on each service.⁴⁷ These utilities are zero-centered by multiplying each by a constant so that the lowest utility is zero. We used nonparametric tests (eg, Wilcoxon rank sum test, sign rank test) to compare utilities within and among patients. Stata software (Stata for Windows, version 8.0; Stata Co, College Station, TX) was used for all statistical analysis. We recruited 300 patients to ensure an adequate sample of those who died within 6 months (n > 30, assuming a 6-month mortality rate of > 10%). This sample size would provide adequate power to detect a .5 standardized difference (one half of the sample standard deviation) in the mean utilities for alternative versus traditional services in this subgroup ( = 0.05, 1-β = 0.80). A standardized difference (s-score) of 0.5 or less is considered a small effect size.⁴⁸

	RESULTS

TOP ABSTRACT INTRODUCTION PATIENTS AND METHODS RESULTS DISCUSSION AUTHORS' DISCLOSURES OF... AUTHOR CONTRIBUTIONS Appendix REFERENCES

 
Patient Characteristics
Patients who participated (300 of 352 patients; 85%) were similar to those who refused with respect to age, Eastern Cooperative Oncology Group (ECOG) score, ethnicity, income, and education, but were more likely to be women (152 of 300 respondents v 17 of 52 nonrespondents; Fisher's exact test P = .023). Patient characteristics are listed in Table 1. None was receiving services from a hospice program, home care agency, or bridge program.

Traditional Versus Alternative Hospice Services
Patients’ mean utilities for alternative services were significantly higher than those for traditional hospice services (0.53 v 0.39; sign rank test P < .001; Fig 1). Similarly, when services were considered individually, patients’ utilities for each alternative service were higher than their utilities for traditional hospice services (Fig 1). For instance, the utility of the even lowest-rated alternative service (family care for dependents, 0.46) was slightly greater than that of the highest-rated hospice service (counselor, 0.44). Because these utilities are zero-centered, they can be interpreted as ratios. Thus a transportation service (0.58) is approximately twice as valuable to patients as a chaplain (0.31) would be.

View larger version (15K): [in this window] [in a new window] [PowerPoint Slide for Teaching]   Fig 1. Patients’ utilities for home care services.

We also examined the service preferences of a subset of patients who were more seriously ill, because we reasoned that these patients might be more likely to prefer traditional hospice services. First, we compared mean utilities for traditional hospice services and alternative services among those patients with an ECOG score > 2, whose activities are severely limited by their illness and who spend more than half of waking hours in bed. An ECOG score > 2 is a strong predictor of limited life expectancy.^49,50 Among these patients (n = 54), the mean utilities for alternative services were significantly higher than they were for traditional hospice services (0.65 v 0.48; sign rank test P < .001).

We also examined the service preferences of those patients who died during the follow-up period. Within 6 months after the interview, 44 patients died (15%) and five (2%) were lost to follow-up. Patients who died during the follow-up period had higher utilities for alternative services than they did for traditional hospice services (mean, 0.68 v 0.56; sign rank test P < .001), as did patients who were still alive at 6 months (mean, 0.50 v 0.36; sign rank test P < .001). Therefore, even among patients in the last 6 months of life, there was a clear preference for alternative services.

Finally, we examined the service preferences of patients who said that they would be willing to give up cancer treatment even if such treatment would offer an almost 100% chance of surviving for 6 months. Because all patients in the study were judged more likely than not to die in 6 months if their illness were to run its usual course (the prognostic eligibility criterion for hospice), those who were also willing to forgo cancer treatment would have been eligible for hospice. Thirty-eight patients (13%) said that they would be willing to forgo cancer treatment, and these patients also preferred alternative services (mean, 0.52 v 0.35; sign rank test P < .001).

Vouchers Versus Home Health Aide Services
Two services—a home health aide and a voucher to compensate friends and family—offer different ways of providing additional practical assistance at home. Hospice programs provide a home health aide as specified by the Medicare Hospice Benefit,¹⁸ whereas a voucher program offers an alternative way to accomplish the same end. Overall, patients assigned a higher utility to a voucher program than they did to the home health aide that hospice provides (0.63 v 0.41; sign rank test P < .001).

Although patients preferred a voucher program (n = 167; 56%), some preferred a traditional home health aide program (n = 68; 23%) and some were indifferent between the two (n = 65; 22%). In a multivariable logistic regression model, patients who preferred a voucher program were more likely to rely on a family member for their caregiving needs (odds ratio, 2.59; 95% CI, 1.37 to 4.90; P = .003) and reported a lower income (odds ratio, 1.80; 95% CI, 1.18 to 2.74; P = .006).

	DISCUSSION

TOP ABSTRACT INTRODUCTION PATIENTS AND METHODS RESULTS DISCUSSION AUTHORS' DISCLOSURES OF... AUTHOR CONTRIBUTIONS Appendix REFERENCES

 
There is a growing recognition that patients with advanced cancer have substantial needs for supportive care. Because approximately half of patients enroll in hospice the last 3 weeks of life, and one third enroll in the last week,¹⁹ their needs for supportive care must be met in other ways. Open access hospice programs and bridge programs offer an innovative way to provide supportive care services to these patients.

However, these results suggest that the package of services that such programs offer—some combination of a visiting nurse, home health aide, chaplain, respite care, and bereavement counselor—may not be ideally suited for patients who wish to continue receiving treatment. Instead, these patients may prefer to receive other supportive care services, such as peer counseling, transportation, family care, and case management. Even those patients who do not wish to continue receiving treatment seem to prefer alternative services. Therefore, the hospice industry should reevaluate the services that it provides in open-access or bridge programs as well as hospice programs and should consider offering services that are not part of the Medicare Hospice Benefit.¹⁸

However, programs need not incur significant additional costs in doing so. For example, programs might procure meal-delivery services through partnerships with community programs (eg, Meals on Wheels). They might also modify existing hospice services to be more consistent with some of the preferences reported here, for instance by employing a counselor to lead a peer support group, which patients perceived to be much more consistent with their needs. Similarly, the value of a visiting nurse to this patient population might be augmented by adding case management responsibilities. In these ways, the infrastructure of existing programs might be better used to meet patients’ needs without the costs of developing new programs. In addition, alternative services like a voucher system may actually offer cost savings compared with a home health aide, because direct payments to friends or families would not need to cover benefits or overhead charges by a hospice or agency.

Finally, many of these services are already provided by existing programs. For example, oncologists or cancer centers may offer case management services, and home health agencies offer visiting nursing care. Similarly, Programs of All-Inclusive Care for the Elderly offer many of the services described here, including a visiting nurse, case management, a home health aide, meals, and transportation. All of these programs will have a role to play in providing home care services to patients with advanced cancer.

Although patients did perceive alternative hospice services to be more valuable than traditional services overall, one in five patients in this sample preferred traditional services. Therefore, programs should not eliminate traditional hospice services entirely. Nor would it be feasible for programs to tailor their package of services based on patient characteristics, as preferences between traditional and alternative services could not be predicted by demographic or clinical variables, including symptom burden, quality of life, or performance status. Moreover, preferences may change over time. Instead, programs will need to offer a range of services that are most likely to meet their patients’ needs. This might be accomplished with a menu of services from which patients can choose a limited number. Alternatively, different programs might offer different fixed sets of services, allowing patients to choose the program that best meets their needs.

As with any study of patient preferences, it is possible that these patients could not adequately appreciate how these services could benefit them. Indeed, one study has found that some services prove to be less valuable than patients anticipate, whereas others are more valuable.⁵¹ However, it is not clear that this source of error would have biased the results of this study toward alternative services. Moreover, in the absence of a more objective criterion of a service's usefulness to patients, patients’ opinions offer a valuable guide for program development and policy. Nevertheless, it will be important to determine whether the alternative services described here improve patients’ quality of life and other outcomes at a manageable cost. Although patient preferences are essential in designing services, considerations of effectiveness and cost-effectiveness are also relevant.

Patients with cancer have substantial needs for care throughout the course of illness.^1-8 Our health care system is only beginning to take seriously the notion of a continuum of cancer care and the corresponding obligation to provide both disease-modifying treatment and palliative care. This study represents a first step in defining how this continuum of care should be designed from the patient's perspective. Further research is needed to better define patients’ needs for supportive care services and the ways in which those supportive care needs can be met more effectively.

	AUTHORS’ DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST

TOP ABSTRACT INTRODUCTION PATIENTS AND METHODS RESULTS DISCUSSION AUTHORS' DISCLOSURES OF... AUTHOR CONTRIBUTIONS Appendix REFERENCES

 
The author(s) indicated no potential conflicts of interest.

	AUTHOR CONTRIBUTIONS

TOP ABSTRACT INTRODUCTION PATIENTS AND METHODS RESULTS DISCUSSION AUTHORS' DISCLOSURES OF... AUTHOR CONTRIBUTIONS Appendix REFERENCES

 
Conception and design: David Casarett, Peter J. O’Dwyer, Frances K. Barg, Mary Naylor, David A. Asch

Financial support: David Casarett

Administrative support: David Casarett

Provision of study materials or patients: David Casarett, Peter J. O'Dwyer

Collection and assembly of data: David Casarett

Data analysis and interpretation: David Casarett, Jessica Fishman, Peter J. O'Dwyer, Frances K. Barg, Mary Naylor, David A. Asch

Manuscript writing: David Casarett, Jessica Fishman, Peter J. O'Dwyer, Frances K. Barg, Mary Naylor, David A. Asch

Final approval of manuscript: David Casarett

	Appendix

TOP ABSTRACT INTRODUCTION PATIENTS AND METHODS RESULTS DISCUSSION AUTHORS' DISCLOSURES OF... AUTHOR CONTRIBUTIONS Appendix REFERENCES

 
Traditional and Alternative Services
Hospice Services Nurse. A nurse monitors and explains the patient's condition and could help reduce any symptoms the patient may be having, such as pain or nausea. A nurse helps manage patient medications and could answer questions that patients and families have.

Chaplain. A chaplain provides spiritual and emotional support and can discuss concerns about the future.

Home health aide. A home health aide provides help with personal needs, such as bathing and dressing, housework, cleaning, and laundry.

Counselor. A counselor is available to talk about concerns about the patient's illness and can identify depression, anxiety, or other conditions the physician should know about.

Respite care. Respite care offers a place that a patient can go to stay for a few days to give family members or other caregivers a rest.

Alternative Services Nurse case manager. A nurse case manager acts as a liaison between the patient and their health care providers and could help arrange appointments or arrange medications or other treatments.

Voucher for assistance at home. A voucher allows a patient to pay neighbors or friends to provide help with personal needs, such as bathing and dressing, housework, cleaning, and laundry.

Meal program. A meal program would deliver reheatable meals to the patient's home every week and would answer questions about nutrition, taste, and appetite changes.

Transportation. Transportation would be provided by a van or bus service to take the patient to and from medical appointments.

Family care. Someone would be available to look after dependents, such as a child or an older parent, while the patient has a clinic visit or other medical appointment.

Peer support. Peer support is provided by someone who has had personal experience with cancer who could answer the patient's questions and talk about the patient's concerns.

	NOTES

 
Supported by Grant No. R01CA109540, by a VA Advanced Research Career Development Award, and by a Presidential Early Career Award for Scientists and Engineers (D.J.C.).

Authors’ disclosures of potential conflicts of interest and author contributions are found at the end of this article.

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TOP ABSTRACT INTRODUCTION PATIENTS AND METHODS RESULTS DISCUSSION AUTHORS' DISCLOSURES OF... AUTHOR CONTRIBUTIONS Appendix REFERENCES

 
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Submitted May 29, 2007; accepted August 31, 2007.

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