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Palliative care symptom assessment for patients with cancer in the emergency department: validation of the Screen for Palliative and End-of-life care needs in the Emergency Department instrument

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Palliative Care Symptom Assessment for Patients

with Cancer in the Emergency Department:

Validation of the Screen for Palliative and End-of-Life Care

Needs in the Emergency Department Instrument

Christopher T. Richards, M.D.,

1

Michael A. Gisondi, M.D.,

1

Chih-Hung Chang, Ph.D.,

2

D. Mark Courtney, M.D.,

1

Kirsten G. Engel, M.D.,

1

Linda Emanuel, M.D., Ph.D.,

2

and Tammie Quest, M.D.

3

Abstract

Objective: We sought to develop and validate a novel palliative medicine needs assessment tool for patients with

cancer in the emergency department.

Methods: An expert panel trained in palliative medicine and emergency medicine reviewed and adapted a

general palliative medicine symptom assessment tool, the Needs at the End-of-Life Screening Tool. From this

adaptation a new 13-question instrument was derived, collectively referred to as the Screen for Palliative and

End-of-life care needs in the Emergency Department (SPEED). A database of 86 validated symptom assessment

tools available from the palliative medicine literature, totaling 3011 questions, were then reviewed to identify

validated test items most similar to the 13 items of SPEED; a total of107 related questions from the database were

identified. Minor adaptations of questions were made for standardization to a uniform 10-point Likert scale. The

107 items, along with the 13 SPEED items were randomly ordered to create a single survey of 120 items. The

120-item survey was administered by trained staff to all patients with cancer who met inclusion criteria (age over 21

years, English-speaking, capacity to provide informed consent) who presented to a large urban academic

emergency department between 8:00 am and 11:00 pm over a 10-week period. Data were analyzed to determine

the degree of correlation between SPEED items and the related 107 selected items from previously validated

tools.

Results: A total of 53 subjects were enrolled, of which 49 (92%) completed the survey in its entirety. Fifty-three

percent of subjects were male, age range was 24–88 years, and the most common cancer diagnoses were breast,

colon, and lung. Cronbach coefficient a for the SPEED items ranged from 0.716 to 0.991, indicating their high

scale reliability. Correlations between the SPEED scales and related assessment tools previously validated in

other settings were high and statistically significant.

Conclusion: The SPEED instrument demonstrates reliability and validity for screening for palliative care needs of

patients with cancer presenting to the emergency department.

Introduction

T

he emergency departmentis increasingly recognized as an important venue for the identification of palliative care needs, as well as the initiation of related therapeutic interventions.1–7Emergency department visits at the end of life, in particular, have been identified as indicators of poor quality of care.1,4 The National Priorities Partnership con-vened by the National Quality Forum has identified as a quality measure that terminally ill patients should not need

to seek more than one emergency department visit during the last 30 days of life, as a means of obtaining routine palliative care at the end of life. Using tools developed in the palliative medicine clinic setting, recent investigation has shown that emergency department patients have unmet palliative care needs.8 Early identification of palliative care needs in the emergency department may lead to better management and reduced need for subsequent emergency department care for physical, spiritual, psychological, or social suffering.

1

Department of Emergency Medicine,2Buehler Center on Aging, Feinberg School of Medicine, Northwestern University, Chicago, Illinois. 3Department of Emergency Medicine, Emory University School of Medicine, Atlanta, Georgia.

Accepted February 10, 2011. ª Mary Ann Liebert, Inc. DOI: 10.1089/jpm.2010.0456

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Many symptom assessment tools are commonly used in palliative medicine to assess the physical, social, therapeutic, spiritual, and psychological needs of patients. One compre-hensive palliative care needs assessment tool is the Needs at the End-of-Life Screening Tool (NEST), a 13-question instru-ment developed from the experience of terminally ill patients across the United States that screens for palliative care needs in four domains: (1) social needs, (2) existential matters, (3) symptoms (physical and psychological), and (4) therapeutic matters.9The NEST instrument, as well as other palliative care needs assessment tools, have been developed and validated in palliative care and oncology clinic settings. A similarly brief, comprehensive palliative medicine screening tool has not yet been adapted for use in the emergency department setting.

In the emergency department, an ideal symptom assess-ment instruassess-ment should be easily understood by the patient and providers, rapid to administer, simple to analyze and interpret, and valid. An ideal tool should be brief, yet com-prehensive, and multidimensional. Such a tool could be used to identify needs and initiate treatment plans that can be continued across care settings—from the emergency depart-ment to inpatient or outpatient managedepart-ment.

The objective of this study was to assess the reliability and validity of a novel, comprehensive, palliative care symptom assessment tool designed for use in the emergency depart-ment by examining its individual scale reliability and com-paring its performance to established palliative care needs assessment tools used in palliative medicine and oncology settings. This tool, the Screening for Palliative Care Needs in the Emergency Department (SPEED) instrument, extends the concept of screening for unrecognized palliative needs in a new but very important setting—the emergency department. Unlike other tools, such as NEST, SPEED was developed by emergency medicine and palliative medicine experts, making SPEED uniquely suited to the emergency department setting. Methods

Study design

A prospective observational cohort study was used to compare the performance of a palliative care symptom as-sessment tool to domains of the previously validated NEST tool.

Setting

This study was conducted at an urban, university-based academic medical center with an annual emergency depart-ment census of approximately 82,000 patients. A compre-hensive cancer center is on site, with a 72-bed inpatient oncology ward and a 16-bed inpatient palliative medicine service.

Formulation of the SPEED instrument

An expert panel of 12 emergency clinicians, including 3 physicians board-certified in both Emergency Medicine and in Hospice and Palliative Medicine, was convened to develop items for the SPEED instrument. All emergency clinicians had a minimum of 10 years of professional, attending-level emergency medicine practice. Each participant had completed the Become an EPEC Trainer or the Become an EPEC-EM Trainer conference offered by The EPEC Project

(Education in Palliative and End-of-life Care) and all ac-tively teach palliative and end-of-life care content in their clinical setting. Experts were asked to examine the original NEST instrument (Table 1)9to identify if question domains translated to the most commonly encountered palliative care needs identified in emergency department patients. Partici-pants were then asked to adapt NEST into items that would potentially identify commonly encountered palliative needs in the emergency department setting, as well as have potential to longitudinally evaluate related interventions initiated from the emergency department, while recognizing the unique challenges of the emergency department, such as time con-straint in administering a symptom assessment tool. After the expert group data was considered, the SPEED instrument was developed (Table 1) by consensus. In conference, the expert panel reviewed the instrument and concluded that the SPEED screening tool possessed face validity with respect to com-monly encountered needs.

Development of validation survey

Item matching. To validate the SPEED questionnaire, each item of SPEED was matched to similar questions from surveys that have been previously validated in clinical set-tings outside the emergency department. A database of 86 validated symptom assessment tools from the palliative medicine literature, totaling 3011 questions, were reviewed to identify screening questions similar to the 13 items of SPEED.9–105

Item reduction. The 3011-item database was organized by the study team to reflect the core domains of physical, spiritual, psychological, spiritual, and therapeutic. For each item of the SPEED survey instrument, 5 to 13 questions that were most similar to the SPEED items were identified. In-cluded items were similar in intent and wording to the SPEED item and all members of the core study group had to agree on the inclusion of each question. Question stem and answer choices for all selected items were adapted to a Likert 0–10 scale, with 0 meaning ‘‘not at all’’ and 10 meaning ‘‘a great deal.’’ For consistency across all questions, wording was adjusted so that a lower number referred to a more positive patient experience, and a high number meant a negative pa-tient experience. Once items were finalized, all items were randomly ordered, using random number generation, into a single instrument with the 13 SPEED questions to form a 120-item survey.

Selection of participants

Emergency department patients with active cancer were recruited to participate in the study between February and April 2009. All patients over 21 years old who presented be-tween the hours of 8:00 am and 11:00 pm with a diagnosis of active cancer were surveyed regardless of their chief com-plaint. For purposes of this study, a patient with active cancer was defined as a patient that (1) was undergoing or in the last 12 months had undergone cancer-directed therapy (radia-tion/chemotherapy), (2) was known to or found by care providers in the emergency department to have metastatic disease, or (3) reported directly that he or she had symptoms related to known cancer. Patients were excluded if they were non-English speaking, intoxicated, too ill, or otherwise unable

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to complete the instruments, or were unable to provide in-formed consent.

Methods of measurement

The 120-item tool was administered during daytime hours by trained research assistants. Three research assistants were trained in survey administration and introduced to the aims of the study prior to subject recruitment. During subject re-cruitment, a research assistant first obtained written informed consent to participate in the study. The research assistant then verbally administered each question in series to the subject. Data was entered into an Excel database (Microsoft, Seattle, WA), using a unique anonymous identifier for each subject. The unit of analysis was the SPEED question, and this was compared to answers for those survey items from matched questions from previously validated surveys.

Primary data analysis

SPSS (IBM, Chicago, IL) was used to obtain the Cronbach coefficient a for each SPEED scale. A value of 0.7 or higher was

considered to indicate good internal consistency of the items in the same scale.

Institutional review board

This protocol was approved through Northwestern Uni-versity Feinberg School of Medicine Institutional Review Board.

Results

Characteristics of study subjects

A total of 53 subjects were enrolled, and 49 (92%) com-pleted the 120-item survey in its entirety. Fifty-three percent of subjects were male with an age range of 24–88 years and a mean age of 59 years. The most common cancer diagnoses were breast (16%), colon (14%), and lung (14%; Table 2). Face and content validity

Face and content validity were achieved through expert group consensus of emergency providers with expertise in Table1. Comparison of NEST and SPEED by Item Domain and Question

NEST SPEED

Social 1. How much of a financial hardship is your illness for you

or your family?

2. How much trouble do you have accessing the medical care you need?

3. How often is there someone to confide in?

4. How much help do you need with things like getting meals or getting to the doctor?

1. How much difficulty are you having with your

medication (for example, obtaining medications, knowing how or when to take them, managing side effects)? 2. How much difficulty are you having getting outpatient

follow-up (for example, transportation, arranging, making or forgetting appointments)?

3. How much difficulty are you having getting your care needs met at home (for example, bathing, dressing, and meals)?

Therapeutic 1. How much do you feel your doctors and nurses respect

you as an individual?

2. How clear is the information from the medical team about what to expect regarding your illness?

3. How much do you feel that the medical care you are getting fits with your goals?

1. How much difficulty are you having communicating with your doctors about your care preferences?

2. How much difficulty are you having with the care your clinical team is providing?

3. How much difficulty are you having getting medical care that fits with your goals?

Symptom Matters Physical

1. How much do you suffer from physical symptoms such as pain, shortness of breath, fatigue, bowel, or urination problems?

2. How often do you feel confused or anxious or depressed?

1. How much are you suffering from pain?

2. How much are you suffering from shortness of breath? 3. How much are you suffering from other physical

symptoms?

Psychological

1. How much are you suffering from anxiety? 2. How much are you suffering from depression?

3. How much are you suffering from feeling overwhelmed?

Existential Spiritual

1. How much does this illness seem senseless and meaningless?

2. How much does religious belief or your spiritual life contribute to your sense of purpose?

3. How much have you settled your relationship with the people close to you?

4. Since your illness, how much do you live life with a special sense of purpose?

1. How much does this illness seem senseless or meaningless?

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emergency medicine and emergency department aspects of palliative care. A national, interdisciplinary group of emergency medicine providers including attending physi-cians, nurses, nurse practitioners, a chaplain, and a social worker all with more than one decade of professional emergency medicine and principle discipline practice were convened by a series of conference calls to review all of the SPEED items. Each item was discussed in its ability to not only assess a domain, but to have potential impact on the action of the emergency department provider to change management with respect to consultation, disposi-tion, or referral.

Concurrent validity

Cronbach coefficient a for survey scales ranged from 0.716 to 0.991, indicating strong correlation (Table 3). Questions that

dealt with the physical domain of palliative care—namely, pain and shortness of breath—performed particularly well. Questions that dealt with social concerns also met the 0.7 Cronbach a correlation threshold. As is consistent with other validation studies that show a trend toward lower a scores among social domains, the social domains in SPEED exhibit lower overall internal consistency.106,107Additionally, we also

performed corrected item correlation, with a ranging from 0.326 to 0.970, suggesting that no one item alone is a predictor for overall burden of palliative care needs.

Limitations

There are several limitations to this study. First, items against which SPEED was validated were modified for scale uniformity. While the investigators kept this modification to a minimum, it could represent a change in the parent question. Scale uniformity could introduce the risk of subjects answer-ing similarly on contiguous questions, however, the benefit of continuity among SPEED items and validating items was thought to outweigh this risk. Additionally, this trend was not observed, and moderated survey administration likely re-duced this risk. Items on SPEED in the social domain per-formed less well than other domains. Items on previously validated surveys that deal with social concerns have also performed less well. SPEED items follow this pattern, which may reflect the nature of the subject matter, but still maintain correlation to answers found on previously validated items. Additionally, because SPEED was not studied independently from the pool of 120 questions used to validate the tool, the time to complete SPEED was not measured. Finally, the pa-tient population in our tertiary medical center emergency department study may not generalize to some emergency department settings. Specifically, our population was mostly Table2. Respondent Characteristics

Respondents 53

Female 47%

Age (years), mean (SD) 59 (16.1)

Ethnicity White 68% African American 23% Hispanic 6% Cancer diagnosis Breast 16% Colon 14% Lung 14% Lymphoma 11%

Admitted to inpatient ward 55%

SD, standard deviation.

Table3. SPEED Scale Performance

Domain/SPEED item Number of items Cronbach coefficient alpha Physical

1. How much are you suffering from pain? 11 0.921

2. How much are you suffering from shortness of breath? 11 0.991

3. How much are you suffering from other physical symptoms? 11 0.893

Spiritual

4. How much does this illness seem senseless or meaningless? 11 0.890

Social

5. How much difficulty are you having getting your care needs met at home (for example, bathing, dressing, and meals)?

6 0.773

6. How much difficulty are you having with your medication (for example, obtaining medications, knowing how or when to take them, managing side effects)?

6 0.795

7. How much difficulty are you having getting outpatient follow-up (for example, transportation, arranging, making or forgetting appointments)?

8 0.716

Therapeutic

8. How much difficulty are you having getting medical care that fits with your goals? 11 0.910 9. How much difficulty are you having communicating with your doctors about your

care preferences? 11 0.940

10. How much difficulty are you having with the care your clinical team is providing? 11 0.914 Psychological

11. How much are you suffering from anxiety? 7 0.933

12. How much are you suffering from depression? 11 0.920

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Caucasian English-speaking oncology patients in a tertiary care medical center.

Discussion

The SPEED instrument is the first comprehensive symptom assessment tool validated for use with emergency department patients that have palliative or end-of-life care needs.

In the emergency department, patients with complex med-ical problems may have difficulty communicating their care needs effectively due to their acute distress and provider time constraints. In one emergency department study on commu-nication in a large academic, urban medical center, the time spent on medical introduction and physical examination was 7 minutes and 31 seconds with an average time to first inter-ruption at 12 seconds; only 16% of patients in the study were asked if they had any questions at discharge.108In addition to time constraints, other limitations exist as barriers to emer-gency medicine providers discussing palliative care issues with patients. These include but are not limited to the lack of pre-existing relationship with a patient, perception of death as failure, and a focus on aggressive resuscitation.6,109However, even if the emergency clinician or patient is thinking about complex issues that need to be discussed, patients may not be able to communicate these needs and emergency clinicians may be reluctant to or unskilled at exploring these needs, namely pain management, de novo.7The SPEED instrument is a brief, multidimensional symptom assessment tool designed to be comprehensive, yet rapid in the assessment of domains of palliative care in an emergency department.110 The SPEED

instrument is intended to assist emergency department pro-viders with a brief comprehensive ‘‘first-pass’’ assessment that allows the identification of palliative needs that likely require intervention either in the emergency department, as an inpa-tient, or in follow-up. In particular, the social domain of SPEED is meant to assess deeper causal relationships between symp-toms and care needs that challenge emergency department patients with serious illness. For example, the patient with a chief complaint of pain may have an underlying issue with medication management—obtaining them, managing them, or experiencing unwanted side effects—that prompted the emergency department visit.

Developed by Emergency Medicine and Palliative Medi-cine experts, SPEED has unique features that distinguish it from other brief assessment tools and makes this instrument applicable to the emergency department setting. Many brief assessment tools used in palliative medicine or oncology settings are domain focused and can be limited in their ap-plicability in the multidisciplinary emergency department setting. Typically, broader exploration would require two or more screening instruments, which becomes even less prac-tical in an emergency setting. This study shows that respon-dents’ answers to SPEED scale items correlate well with those items on previously validated symptom assessment tools, across several domains. This indicates that the SPEED in-strument is a valid tool to comprehensively, but efficiently assess the palliative care needs of oncology patients present-ing to the emergency department.

The present study indicates that the SPEED instrument is a valid survey at identifying palliative care needs in the emergency department. Further studies are required to elu-cidate the therapeutic and operational implications of

screening for palliative care needs of such patients. Specifi-cally, the operational implications of administrating the SPEED tool needs to be further clarified. The SPEED tool is designed to be administered in a quick and efficient manner by all levels of emergency department provider, including physician, nurse, chaplains, and social work. This present study was not designed to study the feasibility of adminis-tration of the SPEED tool, but rather to independently vali-date the individual questions. The accessibility of the survey also lends itself to potential application in a triage kiosk set-ting as well. Further studies will also have to elucidate if the SPEED tool is effective at identifying the palliative care needs of cancer patients as well, such as chronic pain and non-oncologic chronic illness. However, this study demonstrates that the SPEED screening tool is valid to screen for palliative care needs of the oncology patient presenting to the emer-gency department.

Author Disclosure Statement

No competing financial interests exist. References

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