Abstract
Purpose:
We describe the development and the psychometric properties of an instrument to assess self-perceived EOL care competencies for healthcare professionals: The End-of-Life Care Questionnaire (EOL-Q).
Methods:
The EOL-Q consists of 28 questions assessing knowledge, attitudes and behaviors with subscale items addressing seven domains of care: decision-making, communication, continuity of care, emotional support for patients/families, symptom management, spiritual support for patients/families, and support for clinicians. The EOL-Q was used to assess competencies of 1,197 healthcare professionals from multiple work units at a large medical center. Cronbach’s alpha coefficients were calculated for the survey and subscales. A factor analysis was also conducted.
Results:
Internal consistency reliability was for was high for the total scale (0.93) and for the subscales addressing knowledge, behaviors, decision-making, communication, emotional support and symptom management (0.84-0.92); and moderate (>0.68) for the attitudes and continuity of care subscales. The factor analysis demonstrated robust consolidation of the communication and continuity of care subscales (eigenvalue 9.47), decision-making subscale (eigenvalue 3.38), symptom management subscale (eigenvalue 1.51), and emotional and spiritual support subscales (eigenvalue 1.13).
Conclusion:
Analysis of the psychometric properties of the EOL-Q care across settings supports its reliability and validity as a measure of self-perceived EOL care competencies in the domains of communication and continuity of care, decision-making, symptom management, and emotional and spiritual support. The EOL-Q displays promise as a tool for use in a variety of educational, research, and program development initiatives in EOL care.
Keywords
Introduction
In the United States, almost 30% of expected deaths occur in hospitals, 1 and patients with serious and life-limiting illnesses are often hospitalized in the last year of life even if they do not die in this setting.2-4 As such, hospitals play as significant role in the provision of both palliative and end-of-life (EOL) care. While palliative care can be delivered at any stage of a life-limiting illness, EOL care is an important element of palliative care and defines the care given to a patient during the time surrounding death.5-6 Access to palliative and EOL care for hospitalized patients has significantly increased in the US over the last decade,7-8 which resulted in better pain management and symptom control, increased patient and family satisfaction with care, and reduced hospital costs.9-13 However, despite the growth of palliative care programs in hospitals, not all hospitalized patients have access to quality palliative and EOL care. 8
Hospital clinicians caring for patients at the EOL face multiple challenges, as this population has complex care needs. Several studies documented patients’ and families’ experiences and needs related to palliative and EOL care in hospitals. For instance, pain and symptom control, communication with health professionals, decision-making and management, hospital environment, and provision of emotional and spiritual support have been cited as important elements that can enhance the experience of care for dying persons and their families.14-19 Having the proper knowledge and skills in these areas is essential for hospital healthcare providers.
Since there is a paucity of board-certified palliative care specialists, which is expected to continue,20,21 generalists and specialists in areas outside of palliative care will need to be proficient in the basic principles of palliative and EOL care. The lack of staff preparedness for the provision of EOL care has been cited as 1 of the major barriers to optimal care at the EOL.22-24 As such, health professionals, particularly those considered generalists rather than palliative care specialists, are uncomfortable in addressing EOL concerns with patients and families, most likely the result of not having received adequate education about the care of the dying.25-26
Competency-based assessments are essential for determining the knowledge, attitudes, and skills of clinicians providing palliative and EOL care. Most of the existing research evaluating EOL care competencies by discipline and unit of care has been limited to nurses,27-31 physicians,32-35 and intensive care unit settings.36-38 These studies offer a beginning assessment of the educational needs of clinical staff; however, more thorough, comprehensive, and current assessment across healthcare settings and providers with a validated instrument is needed.
To address this gap, we developed a competency-based self-assessment instrument, the End-of-Life Questionnaire (EOL-Q), to examine perceived knowledge, attitudes, and skills of health care professionals within the domains of palliative and EOL care. We used this instrument to assess self-perceived EOL care competencies of over 1000 healthcare professionals at a large academic tertiary medical center and found significant variability in self-perceived EOL care competencies among interdisciplinary staff, particularly between physicians and nurses. 39
The purpose of the current paper is to describe the development of the EOL-Q and to present its psychometric properties as instrument to assess hospital staff preparedness for the provision of optimal EOL care.
Methods
Design and Development of the EOL-Q
We designed the EOL-Q to measure healthcare professionals’ competencies for the provision of EOL care in both acute and intensive care unit settings. We created this tool by modifying an instrument that we previously developed to assess healthcare professionals’ self-perceived knowledge, attitudes and behaviors for the provision of EOL care in the intensive care unit (ICU) setting, the Scale of End-of-Life Care in the ICU (EOL-ICU). 36
The EOL-ICU captured the key elements essential for effective EOL care in the ICU proposed by Clarke et al. 40 : patient and family decision making, communication within the team and with patients and families, continuity of care, emotional and practical support for patients and families, symptom management and comfort care, spiritual support for patients and families, and emotional and organizational support for ICU clinicians. An interdisciplinary research team of experts in palliative care and intensive care representing medicine, psychology, and nursing constructed the EOL-ICU, obtaining feedback from palliative medicine providers and researchers with expertise in test construction. The final construct contains 28 items addressing self-perceived knowledge, attitudes, and behaviors pertinent to the 7 EOL care domains proposed by Clarke, 40 as well as demographic questions. The items are scored on a 5-point Likert scale: “strongly disagree” (1), “disagree” (2), “neutral” (3), “agree” (4), and “strongly agree” (5). Total scores are calculated by summing the responses for all 28 items, with a possible range from 0 to 140, and higher scores indicate greater perceived competency regarding EOL care in the ICU setting. We created subscales by grouping items pertinent to each domain. We used the EOL-ICU in a study assessing self-perceived competencies of 91 intensive care unit providers and found several deficiencies in self-perceived EOL care competencies among staff, particularly in the areas of communication, continuity of care, and decision-making. 36 Psychometric analysis of the EOL-ICU demonstrated strong internal consistency reliability for the total survey, with overall coefficient alpha = .92. For the subscales, the internal consistency reliability analysis was high for knowledge, behaviors, decision-making, communication, emotional support for patients and families and symptom management (Cronbach’s alpha value range = 0.84-0.92), and adequate for attitudes and continuity of care (Cronbach’s alpha = 0.72 and 0.66, respectively). It was not possible to calculate an internal consistency reliability coefficient for the subscale addressing spiritual support for patients and families due to it being limited to 1 item. 36
Development of the EOL-Q
Since our initial study with the EOL-ICU included a limited sample of ICU providers, we modified the questionnaire by altering the language of some of the items to allow for its use in both acute care and intensive care unit settings. The modified instrument, the End-of-Life Questionnaire (EOL-Q), includes all 28 items of the original instrument, which we maintained in the same order (Supplementary Appendix 1). Items 1-12 address self-perceived knowledge, items 13-17 relate to self-perceived attitudes, and items 18-28 address self-perceived behaviors in the provision of EOL care. We modified wording for some of the items in the original instrument to include providers beyond the ICU setting. For example, item 16 was revised from “It is important for physicians, nurses and other ICU team members to collaborate in end-of-life care decision making” to “It is important for physicians, nurses and other team members to collaborate in end-of-life care decision making.” As in the original instrument, the 28 items on the EOL-Q were grouped into subscales that examine perceived competencies in the 7 domains proposed by Clarke et al. 40 described above. Scoring for each item also was kept the same as in the original instrument, using a 5-point Likert scale ranging from 1 = strongly disagree to 5 = strongly agree. Demographic questions include age, gender, education, palliative care certification, work unit, unit acuity level (acute care unit vs ICU), number of years in current practice, frequency of contact with patients with life-limiting illness (monthly vs weekly), and frequency of EOL care conversations per month (infrequent; frequent; specialist in palliative care).
We first used the EOL-Q in a study that we conducted to assess self-perceived EOL care competencies of 1,197 healthcare professionals (nursing, medicine, social work, psychology, physical therapy, occupational therapy, respiratory therapy, and chaplaincy) from multiple work units at a large academic medical center. 39
Statistical Analysis
In addition to the descriptive data and subgroup correlational analysis published in the original study, 39 we calculated the internal consistency reliability of the total survey and subscales using Cronbach’s alpha coefficient. To examine the construct validity and latent factor structure of the EOL-Q, we conducted an exploratory factor analysis (EPA) on the 28-item scale using principal axis factoring method.
The study was reviewed by the institutional review board and deemed exempt.
Results
Table 1 summarizes the demographic characteristics of the study population, and Table 2 provides data regarding the internal consistency of the survey and its subscales for the total sample and by work unit (adult acute care; adult intensive care; pediatric acute care; pediatric intensive care; and neonatal ICU). For the full sample, the internal consistency reliability was high for the total survey (0.93) and for the knowledge (0.92), behaviors (0.88), decision-making (0.89), communication (0.84), emotional support for patients and families (0.90), and symptom management subscales (0.89); moderate for the attitude (0.68) and continuity of care (0.69) subscales; and poor (0.17) for the subscale assessing emotional support for staff. It was not possible to calculate the Cronbach’s alpha for the subscale assessing spiritual support for patients and families due to it being limited to 1 item.
Demographic Characteristics of Study Participants (n = 1,197).
Internal Consistency Reliability (Cronbach’s alpha value) for the EOL-Q Scale and Subscales by Unit of Care.
The internal consistency reliability analysis of the total scale by work setting (Table 2) demonstrated high Cronbach’s alpha coefficient values, which ranged from 0.90-0.94 across units. Furthermore, the internal consistency reliability analysis of the subscales for each work setting demonstrated high Cronbach’s alpha coefficient values for all subscales across all units (alpha range = 0.73-0.94) except for the attitude subscale and for the subscale addressing emotional support for staff.
Tables 3 and 4 contain information of the exploratory factor analysis (EPA). EPA is a method by which a set of observed variables is reduced to a smaller set of conceptually important latent variables. Latent variables are variables that are not observed but are indirectly measured by a group of observed variables. The observed variables measured by the EOL-Q are summarized in Table 2, and the latent constructs or factors are detailed in Tables 3 and 4. For example, in this study, latent variable communication and continuity of care was measured by 9 items as described in Table 4.
Principle Components Factor Analysis of the EOL-Q.
EOL-Q Factors and Internal Consistency Reliability.
The results of EPA suggested that a 4-factor solution accounted for the maximum amount of variance among items (Table 3). The 4 factors comprise the following domains: communication and continuity of care, decision-making, symptom management, and emotional and spiritual support for patients and families, with eigenvalues ranging from 9.47 -1.13, and the proportion of total variance accounted for ranging from 61.13% (factor 1) to 7.28% (factor 4). Items loading onto each factor and internal consistency reliability coefficients were strong for all the factors (Cronbach’s alpha ranging from 0.84-0.90) (Table 4). Overall then, the factor analysis provided support for the construct validity of instrument, demonstrating robust consolidation of the communication and continuity of care subscales (factor 1), decision-making subscale (factor 2), symptom management subscale (factor 3), and emotional support for patients and families, emotional support for staff, and spiritual support subscales (factor 4).
Discussion
We described the EOL-Q, which we constructed to measure self-perceived EOL care competencies of healthcare professionals across a range of acute care hospital settings. It was first used in a large sample (n = 1,197) of healthcare professionals representing multiple disciplines at a large academic medical center with participants from 5 different work units: adult acute care, adult ICU, pediatric acute care, pediatric ICU, and neonatal ICU. 39
Analysis of the instrument’s reliability indicated good internal consistency for the total survey in all work units and for several of its subscales, suggesting that it may be a promising tool for use across multiple settings and disciplines in acute care hospitals. The EOL-Q also had similar internal consistency values for the total scale and its subscales to the original questionnaire from which it was derived, the EOL-ICU. 36 In addition, results of the factor analysis support the validity of the instrument as a measurement of core EOL care competencies consolidated into the areas of community and continuity of care, advance care planning, symptom management, and emotional and spiritual support.
The EOL-Q has unique advantages. First, it measures multiple competencies considered essential for quality EOL care. We chose the framework proposed by Clarke et al. 40 to develop the instrument because it addresses the central elements of EOL care including the physical, emotional, psychosocial and spiritual aspects of care, communication with patients and family, as well as competencies related to teamwork. These domains of care also have been prioritized as essential elements for quality EOL care by other authors as well as several professional groups, patients and families.14,15,18,22,41-46 Factor analysis of the EOL-Q demonstrates that it measures the core elements of EOL care outlined in the literature in a consolidated, parsimonious 4-factor structure emphasizing community and continuity of care, advance care planning, symptom management, and emotional and spiritual support.
Second, the EOL-Q is applicable to multiple healthcare disciplines and work units, including pediatric and adult care settings. While most of the published palliative care competency-based assessment instruments have addressed individual professions such as physicians and nurses, our instrument is applicable to a broader scope of disciplines who can be measured at the same point. Although several studies on competency-based assessment have looked at ICU providers32,33,36,37,39, very few studies address EOL competencies among staff in acute care adult and pediatric units.30,39,47 Given the inherent interdisciplinary nature of palliative and EOL care, availability of a reliable and valid instrument that can be employed across care settings and providers is essential to future educational and research efforts in the field.
Whereas our study has several strengths, including a robust approach to data analysis utilizing a large sample of interdisciplinary health care staff, it also has limitations. First, the instrument relies on self-reported competencies rather than observed skill in providing EOL care. Research involving measurement of actual competency in EOL care would offer additional important information to guide behavioral and educational interventions for healthcare providers. 35 Second, it was a single-site study at a large academically affiliated medical center, and an accurate response rate could not be calculated given that the survey invitations were sent out to large professional email groups. It is therefore possible that the results may not be generalizable to other settings and institutions. Third, an internal consistency reliability coefficient could not be calculated for the subscale addressing spiritual support for patients and families due to it being limited to one item. Given that the focus of the current study was to examine the psychometric properties and factor structure of the existing scale as adapted for a range of acute care settings, future research may aim to expand the spiritual support subscale and evaluate for associated potential improvement of the overall instrument. In addition, studies examining utility of the instrument across institutions and including other validity measures will be of benefit.
Despite these limitations, the EOL-Q can be used to gather baseline data on healthcare professionals’ self-perceived knowledge, attitudes and behaviors related to the provision of EOL care in acute care and ICU settings. This in turn may be useful when planning educational interventions to improve clinician preparedness to deliver effective EOL care. In addition, it may assist hospital administrators and quality improvement experts to collect, analyze, measure, and monitor data to continually improve EOL care in their institutions.
Conclusion
Analysis of the psychometric properties of the EOL-Q with a large (n = 1,197) sample of health care providers across adult, pediatric, and neonatal acute and intensive care settings supports its internal consistency reliability and construct validity as a measure of self-perceived EOL care competencies in the domains of communication and continuity of care, advance care planning, symptom management, and emotional and spiritual support. The EOL-Q displays promise as a tool for use in a variety of educational, research, quality improvement, and program development initiatives in palliative and EOL care.
Supplemental Material
Supplemental Material, sj-pdf-1-ajh-10.1177_10499091211005735 - An Instrument to Assess Self-Perceived Competencies in End-of-Life Care for Health Care Professionals: The End-of-Life Care Questionnaire
Supplemental Material, sj-pdf-1-ajh-10.1177_10499091211005735 for An Instrument to Assess Self-Perceived Competencies in End-of-Life Care for Health Care Professionals: The End-of-Life Care Questionnaire by Marcos Montagnini, Heather M. Smith, Deborah M. Price, Linda Strodtman and Bidisha Ghosh in American Journal of Hospice and Palliative Medicine®
Footnotes
Declaration of Conflicting Interests
The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The authors received no financial support for the research, authorship, and/or publication of this article.
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References
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