A Statewide Survey of Adult and Pediatric Outpatient Palliative Care Services

Abstract

Background:

Outpatient palliative care services can improve patient outcomes, yet little is known about their structure and characteristics.

Objective:

To describe the structure and characteristics of outpatient palliative care services associated with California hospitals.

Design:

Electronic survey.

Setting/Subjects:

All 377 acute care hospitals in California.

Measurements:

Outpatient palliative care services structure and operational characteristics, including staffing, clinical availability, and funding.

Results:

Overall 96% (361/377) of hospitals responded. Of the 136 hospitals with an adult palliative care service, 18% (n=24) reported an outpatient palliative care service with a mean age of 3.7 years. Of the 42 hospitals offering pediatric palliative care services, 19% (n=8) reported an outpatient palliative care service with a mean age of 3.4 years. On average, adult outpatient palliative care services see 159 new patients per year with 722 follow-up visits. Pediatric outpatient palliative care services see 10 new patients per year with 28 follow-up visits. The average staffing of adult outpatient palliative care services is 2.1 full-time equivalent (FTE; range, 0.2–12) and for pediatric outpatient palliative care services 0.7 FTE (range, 0.1–2.0). Adult outpatient palliative care services operate a mean of 3.9 days per week compared to 1.1 days per week for pediatric outpatient palliative care services. Few services provided 24/7 coverage (25% adult, 38% pediatric). Wait times for newly referred patients were 11 days for adults and 9 days for pediatrics. Most referrals are received from oncology (adult=47%, pediatric=43%). Funding for outpatient palliative care services is largely through institutional support (adult=80%, pediatric=62%), followed by foundations (adult=10.3%, pediatric=23%), billing (adult=8.8%, pediatric=0%), and philanthropy (adult=0.9%, pediatric=15%). Compared to similar data from 2007, the prevalence of outpatient palliative care services affiliated with hospitals in California has not changed significantly.

Conclusions:

Few California hospitals offer outpatient palliative care services. This finding has remained consistent over time. Adult and pediatric outpatient palliative care services care primarily for patients with cancer, operate part-time with modest staffing, and are funded primarily by their institution. Making the case for value to engender more institutional support, increasing billing revenue, system initiatives, and partnering with insurers may lead to the establishment of more outpatient palliative care services.

Introduction

Palliative care has emerged as an effective strategy for caring for patients with serious illness. Research documents that palliative care improves patient and family caregiver satisfaction as well as clinical outcomes such as pain and quality of life.^1–6 Recognized as a subspecialty by the American Board of Medical Specialties, palliative care also sits at the alignment of quality and cost, demonstrating significant reductions in readmissions and cost avoidance, especially in hospitals as well as for home-based palliative care.^6–8

Much of the growth in palliative care over the last decade has been in inpatient palliative care services. However, outpatient services in academic and community settings are considered the new frontier in palliative care.⁹ Prominent medical professional organizations, including the Institute of Medicine and the American Society of Clinical Oncology, have called for palliative care to be integrated into routine care for patients with serious illness.^10,11 Major regulatory and certification organizations are also now offering recognition for quality palliative care and an insistence that palliative care be available widely.^12,13 In fact, outpatient palliative care stands at the nexus of the quality/cost alignments being explored in patient-centered medical homes and accountable care organizations.¹⁴

In the midst of this excitement, outpatient palliative care services appear to be growing quickly but there is little research into the prevalence of services, the rate of growth, and comparison data for operational metrics. There are no published data on the prevalence of pediatric palliative care services. In a study of cancer centers, Hui et al.¹⁵ reported that 59% of National Cancer Institute (NCI)-designated comprehensive cancer centers surveyed claimed to have outpatient palliative care services, while only 22% of non-NCI–designated cancer centers did. Surveying outpatient palliative care services in selected academic medical centers, Rabow et al.¹⁶ reported that programs had an average of 250 new patients annually, were available 3 days weekly on average, and received 76% of their referrals from oncology and only 23% from inpatient PCSs. On average, the services were supported by billing revenue (49%), institutional support (45%), and philanthropy (6%). Using a convenience sample of a variety of types of outpatient practices, Smith et al.¹⁷ described the national landscape of outpatient palliative care services and reported that the majority of patients had a cancer diagnosis, one-third of practices operated just 1 half-day weekly, and more than one-half had staffing shortages. In a 2007 study of California hospitals, similar to the current one described herein, Berger and colleagues¹⁸ reported that 8% of California hospitals had adult outpatient palliative care services, with a mean age of 3 years, a mean staffing full-time equivalent (FTE) of 1.4 and were seeing an average of 197 new patients annually.

In light of the need for documentation of prevalence of outpatient palliative care services and the need for comparison data potentially useful to programs now working to develop or expand their services, we undertook to update the 2007 California data and conducted a statewide survey to describe the availability and basic operational metrics of outpatient palliative care services available from hospitals in California already offering inpatient palliative care services.

Methods

Hospitals

Using data from the California Office of Statewide Health Planning and Development (OSHPD) we identified all 377 acute care hospitals, including public and Veteran Affairs hospitals, that might be expected to have a palliative care program. We excluded rehabilitation, specialty (cardiology, orthopedic), and psychiatric hospitals that would not be expected to provide palliative care services.

Survey

Survey items were updated from a previous survey assessing palliative care services in California hospitals.¹⁹ The survey included items that described the type of palliative care service provided at each hospital using precise definitions as described previously.²⁰ We designated a hospital as having a palliative care program if it offered at least one type of palliative care service. If respondents reported they had an outpatient palliative care services, they were asked to describe the structure and characteristics of their adult or pediatric service. Items addressed age of the service, number of patients seen, number of follow-up visits, length of visits, and wait times. Staffing items addressed amount of FTE provided and availability. We also asked about outpatient palliative care services referral location and funding sources. The UCSF Committee on Human Research approved the study.

Procedure

In 2011, the National Health Foundation (NHF) administered the survey with the support of the three hospital councils in California: the Hospital Council of Northern and Central California, the Hospital Association of Southern California, and the Hospital Council of San Diego and Imperial Counties. The NHF sent e-mails to each hospital's chief executive officer (CEO) as well as the identified palliative care leader (if applicable) within each hospital. The e-mails were addressed from the CEO of the respective hospital council, introduced the survey, and requested that they or the person most knowledgeable about their hospital's palliative care services, such as the palliative care program director, director of social services, or chief nursing officer, complete the survey.

For those hospitals that did not complete the survey after the first email, staff at each of the hospital councils or at the NHF telephoned the assistants of the CEOs to encourage the hospital to participate. In addition, for the 3 months following distribution of the first invitation, the NHF sent up to three e-mail reminders and made up to three telephone calls to those institutions that had not completed the survey, after which the institution was considered nonresponsive. Hospitals with incomplete surveys were contacted by the NHF via e-mail or telephone and asked to complete their survey. Information about the respondents was kept confidential and separate from responses about the palliative care services.

Data preparation and statistical analysis

For data describing staffing levels we examined the dedicated time (FTE) provided by the different outpatient palliative care services team members. outpatient palliative care services Total FTE was calculated by summing effort dedicated to the outpatient palliative care services by physicians, advanced practice nurses, registered nurses, social workers, and chaplains (we asked about physician assistants but no hospitals reported having any on the outpatient palliative care services). Advanced practice nurse/physician FTE was calculated by summing effort dedicated by advanced practice nurses and physicians only. We provide a separate FTE for these clinicians, as they generally have the authority to prescribe medication. We defined outpatient palliative care services nurse/physician FTE as effort of physicians, advanced practice nurses, and registered nurses. These clinicians have key roles in patient education and the diagnosis and management of symptoms. For hospitals for which we had data from both our 2007 survey and the current survey, we assessed whether an outpatient palliative care service had been sustained, not sustained, or was new in 2011. We also examined hospital characteristics associated with each category of outpatient palliative care services.

Descriptive statistics (frequencies, mean, median, standard deviation [SD], and range) were used to examine the distribution of measures as appropriate. We used χ² analysis to test for bivariate associations between categorical variables, and analysis of variance (ANOVA) to examine associations between categorical and continuous variables. The Statistical Package for the Social Sciences (SPSS) for Mac (version 22; SPSS Inc., Chicago IL) was used to analyze these data and to compare the 2007 and 2011 data.

Results

Overall, 96% (361/377) of hospitals responded (Table 1). Of the 136 hospitals with an adult palliative care service, 18% (n=24) reported having outpatient palliative care services, representing only 7% (24/361) of hospitals overall. The mean age of outpatient palliative care services was 3.7 years (median=2.5; range, <1–12). Of the 42 hospitals offering pediatric palliative care services, 19% (n=8) have outpatient palliative care services with a mean age of 3.4 years (median=2.0; range, <1–10). On average, adult outpatient palliative care services see 159 new patients per year (median=110; range, 1–480) with a mean visit length of 65 minutes (median=60; range, 60–120), and 722 follow-up visits (median=400; range, 20–3000) with a mean visit length of 37 minutes (median=30.0; range, 15–60; average of 4.5 follow-up visits per patient). Pediatric outpatient palliative care services see 10 new patients per year (median=5; range, 1–25) on average with a mean visit length 60 minutes (median=60, range, 60–60), and 28 follow-up visits (median=24; range, 1–60) with a mean visit length of 32 minutes (median=30.0; range, 15–60; average of 2.8 follow-up visits per patient).

Table 1.

Outpatient Palliative Care 2011 Survey Responses for Adult and Pediatric Programs

2011 outcomes	Adult palliative care programs (n=136)			Pediatric programs (n=42)
Hospitals with an outpatient service (%)	18 (n=24)			19 (n=8)
	Mean	Median	Range	Mean	Median	Range
Service age (years)	3.7	2.5	<1–12	3.4	2.0	<1–10
New patients per year	159	110	1–480	10	5	1–25
Initial visit length (minimum)	65	60	60–120	60	60	60–60
Follow-up visits per year	722	400	20–3000	28	24	1–60
Follow-up visit length (minimum)	37	30	15–60	32	30	15–60
Staffing (%)
Physician	79 (n=19)			60.0 (n=5)
APN	42.0 (n=10)			38.0 (n=3)
RN	33.0 (n=8)			25.0 (n=2)
Social worker	54.0 (n=13)			25.0 (n=2)
Chaplin	8.0 (n=2)			13.0 (n=1)
Total FTE^a	2.1	1.1	0.2–12	0.7	0.5	0.1–2.0
APN/Physician FTE^b	1.0	0.6	0.2–4.5	0.4	0.1	0.1–1.0
Nurse/Physician FTE^c	1.6	0.7	0.2–8.0	0.5	0.5	0.1–1.0
Half-days available per week	3.9	3.5	<1–12	1.1	1.0	<1–5
Provides 24/7 coverage (%)	20 (n=4)			38 (n=3)
New referral wait time (days)	11	7	1–28	9	7	1–28
Referral source (%)
Oncology	47	48	0–95	43	34	5–100
Inpatient palliative care service	27	15	0–100	16	0	0–60
Primary care	12	3	0–70	4	0	0–10
Funding source (%)
Institutional	80	100	0–100	62	100	0–100
Foundation	10	0	0–90	23	0	0–85
Clinical billing revenue	8.8	0	0–100	0	0	0–0
Philanthropy	0.9	0	0–15	15	0	0–60

Total FTE includes staffing for physicians, advanced practice nurses, registered nurses, social workers, and chaplains

APN/Physician FTE Includes staffing for advanced practice nurses and physicians

Nurse/Physician FTE includes staffing for physicians, advanced practice nurses, and registered nurses.

APN, advanced practice nurse; RN, registered nurse; FTE, full-time equivalent.

In terms of staffing, dedicated time provided to the adult outpatient palliative care services was 2.1 total FTE (median=1.1; range, 0.2–12.0). On average 79% of teams reported having a physician, 54% a social worker, 42% an advanced practice nurse, 33% a registered nurse, and 8% a chaplain. Dedicated time provided to a pediatric outpatient palliative care services was 0.7 total FTE (median=0.5; range, 0.1–2.0). Among the pediatric outpatient palliative care services, 60% included a physician, 38% a registered nurse, 25% an advanced practice nurse, 25% a social worker, and 13% a chaplain.

Adult outpatient palliative care services operate a mean of 3.9 half-days per week (median=3.5; range, <1–12) compared to 1.1 half-days per week for pediatric outpatient palliative care services (median=1.0; range, <1–5). Few services provide 24/7 coverage (20% adult, 38% pediatric). Wait times for newly referred patients were 11 days for adults (median=7; range, 1–28) and 9 days for pediatrics (median=7; range, 1–28). Most referrals are received from oncology (adult=47%, pediatric=43%), the inpatient palliative care service (adult=27%, pediatric=16%) or primary care (adult=12%, pediatric=4%). Funding for outpatient palliative care services is largely through institutional support (adult=80%, pediatric=62%), followed by foundations (adult=10.3%, pediatric=23%), billing (adult=8.8%, pediatric=0%), and philanthropy (adult=0.9%, pediatric=15%).

Comparing the 2007 data to the 2011 findings demonstrates that there have been no significant changes in the characteristics of outpatient palliative care services. Specifically, since 2007, there has been no change in the absolute number of adult outpatient palliative care services or the proportion of California hospitals offering outpatient palliative care services, the age of the services, the average number of new patients seen annually, or the mean staffing FTE in these services (Table 2). Among hospitals with pediatric palliative care services, there also was no significant change from 2007 to 2011 in the proportion of hospitals providing outpatient palliative care services (19% for both).

Table 2.

Comparison of 2007 and 2011 Adult Outpatient Palliative Care Surveys

Outcome	2007	2011	p value
Hospitals with outpatient palliative care services (%)	8 (27/351)	7 (24/361)	0.4
Service age in years (mean)	3	3.7	0.4
New patients/year (mean)	197	159	0.6
Total FTE (mean)^a	1.4	2.1	0.3
APN/Physician (mean)^b	0.7	1.0	0.4
Nurse/Physician FTE (mean)^c	1.0	1.6	0.2

Total FTE includes staffing for physicians, advanced practice nurses, registered nurses, social workers and chaplains.

APN/Physician FTE Includes staffing for advanced practice nurses and physicians.

Nurse/Physician FTE includes staffing for physicians, advanced practice nurses, and registered nurses.

APN, advanced practice nurse; FTE, full-time equivalent.

We had matched data for 30 hospitals from 2007 and 2011. These data revealed that 27% (n=8) hospitals sustained their outpatient palliative care services from 2007 to 2011, 47% (n=14) of hospitals did not have an outpatient palliative care services in 2007 but reported the presence of a new program in 2011, and 27% (n=8) were not sustained from 2007 to 2011. Most new outpatient palliative care services were established in nonprofit hospitals (93%, n=13), teaching hospitals (71%, n=10), and those with a system affiliation (64%, n=9; Table 3). Teaching hospitals were significantly more likely to have sustained their outpatient palliative care services or established a new palliative care service than nonteaching sites.

Table 3.

Association between Hospital Characteristics and the Sustainability of an Outpatient Palliative Care Service

	Pallitive care program status
Hospital characteristics	Not sustained n=8 % (n)	Sustained n=8 % (n)	New n=14 % (n)	p value
Number of beds	283 (155, 411)	384 (123, 645)	300 (202, 398)	0.6
Ownership
City/county	0 (0)	0 (0)	7 (1)	—
Nonprofit	100 (8)	100 (8)	93 (13)
Teaching site^a
No	87 (7)	50 (4)	29 (4)	0.03
Yes	13 (1)	50 (4)	71 (10)
System affiliation^b
No	37 (3)	0 (0)	36 (5)	0.1
Yes	63 (5)	100 (8)	64 (9)

Teaching site: hosted a residency training program as reported by the National Residency Matching Program.

System affiliation: including three or more hospitals.

BOLD indicates statistically significant.

Discussion

A statewide survey of hospitals reveals that only 7% of California hospitals offer outpatient palliative care services. In addition, fewer than one-fifth of California hospitals with inpatient palliative care services also offer services in the outpatient setting. Adult and pediatric outpatient palliative care services in California care primarily for cancer patients, operate part-time with modest staffing, and are funded primarily by their institution with relatively little reliance on billing revenue. Staffing for adult outpatient palliative care services is primarily with physicians and social workers; for pediatric outpatient palliative care services it is primarily with physicians and registered nurses. Wait times for new patient appointments are 9 days for pediatric outpatient palliative care services and 11 days for adult outpatient palliative care services. Given that there is great need for palliative care for people with heart failure, dementia, and chronic lung disease²¹ and that there is often great urgency for palliative care services when the referral is made, there is need for greater staffing of outpatient palliative care services to provide more rapid response to more patients.

This research adds important information to the existing literature. First, it appears that common financial models for sustaining outpatient palliative care services differ between hospital-affiliated programs and academic outpatient palliative care services. Compared to results from a previous study of academic outpatient palliative care services primarily affiliated with cancer centers,² our study reveals that California hospital-affiliated outpatient palliative care services see fewer patients and with much less reliance on billing revenue. Primarily, the outpatient palliative care services in our study are supported by the hospital with which they are affiliated. Second, our study provides some initial descriptions of pediatric outpatient palliative care services affiliated with California hospitals where volume and utilization appear low. Third, to our knowledge no prior research has assessed the prevalence of outpatient palliative care services over time. In our study, the proportion of hospitals offering outpatient palliative care services remained unchanged over the 4 years between 2007 and 2011, although over that time new outpatient palliative care services were established and others failed. New outpatient palliative care services were established primarily in hospitals that were not-for-profit, teaching sites, and with a teaching affiliation. Not surprisingly this is a very similar pattern to what we have found with inpatient palliative care services.²² Although it is widely perceived that outpatient palliative care services are growing, including through system-wide initiatives at the VA and other institutions, the evidence from our study demonstrates that some hospitals, especially those without a teaching mission, are having difficulty in sustaining their outpatient palliative care services. Further research should be undertaken amongst a larger sample of outpatient palliative care services to determine what mechanisms are making it difficult to maintain outpatient palliative care services and what strategies could be implemented to promote sustainability. Preliminary findings examining the sustainability of inpatient palliative care services may be a useful template in answering these questions.²²

Our study had an excellent response rate and used a methodology employed successfully previously.²⁰ However, our study has limitations inherent in this type of survey research. Our survey relied on self-report information that has potential inaccuracies resulting from poor recall, or limited access to information about outpatient palliative care services structures and processes of care. We made efforts to maximize the accuracy of the data but did not verify the correctness of the information we received. Although we offered clear definitions of outpatient palliative care services, given the growing calls nationally for outpatient palliative care services, respondents may have been motivated to overreport their available services or may simply not have had access to accurate or up-to-date information. The fact that we found such a low prevalence suggests there was little if any overreporting. Our research describes outpatient palliative care services in a populous state but our findings may not be generalizable to other parts of the country. Finally, our results do not describe all outpatient palliative care services, simply those associated with California hospitals. The size, scope, and finances of outpatient palliative care services in other settings may be different.

Nevertheless, the research here does serve as a valuable snapshot of hospital-affiliated outpatient palliative care services. Future research should evaluate other models of outpatient palliative care services including non-hospital affiliated outpatient palliative care services such as those that are home-based, co-located in specialty practices, and freestanding. More information about pediatric outpatient palliative care services is necessary to ensure that we meet the needs of seriously ill children and their families. Ultimately, especially given the suggestion that there may be high turnover in outpatient palliative care services, further work must focus on understanding and overcoming barriers to developing and sustaining outpatient palliative care services and on evaluating their impact on patient outcomes.

Footnotes

Acknowledgment

This project was supported by the California HealthCare Foundation, although the foundation had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; and preparation, review, or approval of the manuscript.

We thank the Hospital Council of Northern and Central California, the Hospital Council of Southern California, and the Hospital Council of San Diego and Imperial Counties for their support in encouraging their members to participate. The authors would like to acknowledge Kathleen Kerr for her work in helping to design the survey and Kelly Bruno and the National Health Foundation for their help in developing the survey tool and managing dissemination.

All three authors contributed to the design of the study survey, the data analysis, and the manuscript preparation and revision. Dr. Rabow had full access to all of the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.

The data presented here was originally presented by Drs. Rabow, O'Riordan and Pantilat as a poster at the American Association of Hospice and Palliative Medicine national conference, New Orleans, LA, March 6, 2013.

Author Disclosure Statement

No competing financial interests exist for any of the authors.

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