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September 2019 Article of the Month
by John Ehman, Editor, ACPE Research Article-of-the-Month
and Manager for Pastoral Care, Penn Presbyterian Medical Center, Philadelphia PA
Fitchett, G., Pierson, A. L. H., Hoffmeyer, C., Labuschagne, D., Lee, A., Levine, S., O'Mahony, S., Pugliese, K. and Waite, N. "Development of the PC-7, a quantifiable assessment of spiritual concerns of patients receiving palliative care near the end of life." Journal of Palliative Medicine (2019): online ahead of print, September 4, 2019; 6pp. [This article, along with supplementary material, is available freely on the Internet by open access.]
[Editor's Note: Because this article is available ahead of print, no final page numbers can be cited. References are to manuscript [MS] page numbers.]
SUMMARY and COMMENT: This month's article is a concise presentation of the development of a "an evidence-based model for spiritual assessment, specific to adult palliative care, that quantified the patients' level of unmet spiritual concerns and that could be widely adopted" [MS p. 2]. It is intended to avoid three common limitations of clinical spiritual assessments: namely, a one-size-fits-all strategy that stretches to accommodate too broad a spectrum of clinical contexts, a concentration on narrative to the exclusion of a quantifiable component, and "the lack of a standard, evidence-based approach" [MS p. 2]. The PC-7 model -- so named for its Palliative Care focus and its seven items -- is intended only for patients at the end of life, not those who may be receiving palliative care for other reasons and not for families. The project was an effort of seven Chicago-area chaplains who came together as a research team through the Coleman Palliative Medicine Training Program.
The authors generated a "set of key themes or central spiritual issues and related indicators" from "a review of relevant literature, from a series of case discussions, and from the clinical experience of the team members" and then worked on "inter-rater reliability in using the model to score patients' unmet spiritual needs" [MS p. 2]. Their interest in making the assessment quantitative was guided by the Spiritual Distress Assessment Tool (SDAT) proposed in 2010 by a research group based in Switzerland [--see Items of Related Interest, §I, below]. After monthly case discussions and eleven iterations of the current model, the items of the PC-7 were formalized as follows:
- Need for meaning
- Need for integrity, a legacy
- Concerns about family
- Concern about dying
- Issues related to treatment decisions
- Religious/spiritual struggle
- Other dimensions
A very helpful table [MS p. 3] explicates the items, giving practical descriptions of each. [And, see Items of Related Interest, §III, below, regarding the bases of these items.]
Scoring for each of the items is done on a modified 0-3 scale, with a special option to note a need for further assessment :
- 0 = no evidence of spiritual concern
- 0* = no evidence of spiritual concern, further assessment needed to be sure
- 1 = some evidence of spiritual concern
- 2 = substantial evidence of spiritual concern
- 3 = evidence of severe spiritual concerns
The authors also explain the application of this scoring in certain special circumstances: when there has been a change in patient need during a conversation, when a chaplain's prior knowledge of a patient is particularly relevant, and when there are multiple indicators of religious/spiritual needs at differing levels [--see MS p. 4]. Practical sensitivity to real-world usage seems, to this reader, evident throughout and a likely function of the fact that practicing chaplains are behind this research.
While quantification is a principal aim of the PC-7, the authors have sought to preserve the narrative quality of chaplains' interactions in the process.
...[O]ur PC-7 model for spiritual assessment is based on an interview with the patient. The interview is not intended to use structured discussion of the themes or indicators in the model; most chaplains prefer open-ended interviews that are responsive to the patients' concerns. ...When one or more of the themes in the PC-7 have not been mentioned in an open-ended interview, chaplains might comment on them, noting that other patients have had concerns in these areas. The chaplain can then inquire whether they are a concern for the patient being interviewed. While the clinical situation frequently does not allow multiple conversations over several days, when the chaplain has had the opportunity to become more familiar with the patient's background, concerns, and coping resources, our spiritual assessments are likely to be more thorough. [MS p. 4]
They suggest, though, that future work by their team may look toward the development of specific questions to clarify potentially unmet needs that have not been mentioned by the patient.
A case study illustrating the application of the PC-7 and the process of fine-tuning its inter-rater reliability is available as supplementary material. See "Mildred: A Case Study for Assessment of Spiritual Concerns of Patients Receiving Palliative Care Near the End of Life." This is a most useful addition to the article and should help chaplains get a feel for the tool.
Beyond the testing of the model within the development team, reliability was further tested with 154 chaplains who participated in a national webinar hosted by the Association of Professional Chaplains in February 2018, and through two workshops at national conferences of the Association of Professional Chaplains and the National Association of Catholic Chaplains. Regarding the webinar, a "remarkable level of agreement" was shown "after only a 15-20-minute introduction to the model and [a] case" [MS p. 4]. And, at the two workshops, each with attendance over 100, "participants...expressed enthusiasm for having a quantifiable model for assessment specific to patients receiving palliative care near the end of life" [MS p. 5].
Limitations of the current study indicate additional research is needed that involves more culturally diverse samples (perhaps including a "nontheistic" sample) and patients outside of the hospital setting, that explores "chaplains' experience and comfort using the model," and that "determine[s] whether palliative care colleagues in other disciplines (physicians, nurses, and social workers) find the model provides them with the information they need about the patients [religious/spiritual] needs and concerns and provides it in an efficient way" [MS p. 5]. Also, of course, work is called for on the needs of families and of palliative care patients who are not at the end of life, which is not here within the purview of the PC-7.
An observation: the authors counter what they believe might be a criticism that the tool's attention to religious/spiritual (R/S) needs may ignore patients' resources. They flatly state, "This is not the case; the chaplains' assessment of the patient's R/S resources is taken into account in evaluating the extent to which an R/S concern or need is unmet, that is, beyond the patient's current available personal or interpersonal R/S resources" [MS p. 4]. They go on to give an illustration of this. Now, it is true that the PC-7 is foremost an assessment of R/S needs rather than resources or strengths, so chaplains using the tool would seem to be well-served to read the authors on this point carefully, lest anyone inadvertently not give a patient's resources their due in an assessment.
This team of chaplains has put forward a model with conceptual grounding well beyond a level of expert opinion, capitalizing on a recognition that "[r]esearch now permits the development of more efficient and research-informed condition-specific models for spiritual assessment" [MS p. 2]. They have gone a long way here to demonstrate their tool as worthy of broad adoption or at least serious consideration, though further study is admittedly necessary. Nevertheless, they conclude with reasonable confidence, "Once proven reliable and valid, the PC-7 model can be used to identify the prevalence and intensity of unmet R/S needs and concerns among patients at the end of life and in research testing the effects of spiritual care interventions that address those needs" [MS p. 5]; and in that they have made a significant contribution to the field.
The bibliography of 34 references is quite appropriate to the article and offers a nice collection of solid leads for further reading.
NOTE: The research team is also developing training material for the use of the PC-7, to be distributed through Transforming Chaplaincy and various organizations. When that material becomes available, this ACPE Research page will be updated with the appropriate links.
Suggestions for Use of the Article for Student Discussion:
While articles on instrument development often do not captivate non-researchers, this one should be engaging to any chaplain at any level. It is relatively brief and clearly written, and it presents a tool that can be immediately imagined for clinical application. Chaplain groups based outside of hospital settings may need to extrapolate a bit, but the relevance of the topic makes it of wide interest in spiritual care, and the items of the PC-7 could raise awareness of end-of-life care needs in general. The very full table on MS p. 3 could be used as a guide through those items. Can students think of patient needs that are not covered by the first six of the seven items (without resorting to the "Other Dimensions" category)? Discussion could turn to the question of the importance of condition-specific models for spiritual assessment that don't attempt to be one-size-fits-all for every care scenario. What spiritual assessment models are familiar to the students, and do these seem -- perhaps ironically -- limited by a goal to be all-inclusive? Are they aware of how any assessment that they know is based upon more than "expert opinion"? What are students' experiences with assessments specifically in end-of-life care? Next, they might talk about our authors' position [MS p. 2] that research-based, standardized, spiritual assessments with a quantitative component are vital to the clinical setting. And, are they comfortable with the extent to which the PC-7 attempts quantification while still honoring chaplains' training and skill around patient narrative? Might keeping the items of the PC-7 in mind help them stay in touch with the full spectrum of concerns for palliative care patients at the end of life? Are they open to the use of a tool like the PC-7 as simply part of their professional discipline? Is it important to them that this tool is the product of a team of chaplains? Finally, the group might take up the case study in the supplementary material accompanying the article.
Related Items of Interest:
I. The Spiritual Distress Assessment Tool (SDAT) developed by Stefanie M. Monod and colleagues is cited in our featured article as a demonstration of a quantifiable approach to assessing unmet spiritual needs [MS p. 2] and an example of a scoring strategy [MS pp. 3-4]. It is said also to be a model for examining reliability and validity [MS p. 5] and for the potential creation of interview questions to clarify unmet spiritual needs beyond what patients may have explicitly mentioned [MS p. 4]. For more about the SDAT, see:
Gherghina, V., Cindea, I., Costea, D., Popescu, R. and Balcan, A. "Spiritual distress assessment tool a valid instrument for elderly patients in the perioperative period, 18AP3-7." European Journal of Anaesthesiology 31, suppl. (June 2014): 267. [(Abstract only:) BACKGROUND AND GOAL OF STUDY: Researchers' interest in the connections between mind and body coincides with increasing interest in the holistic view of health care, in which emotional and spiritual needs are considered inextricable from physical and psychological needs. The Spiritual Distress Assessment Tool (SDAT) is a 5-item instrument developed to assess unmet spiritual needs in elderly patients and to determine the presence of spiritual distress. The objective of this study was to investigate the SDAT psychometric properties. MATERIALS AND METHODS: This cross-sectional study was performed in Surgery Clinic of the Constanta County Emergency Hospital. Patients (N =72), aged 65 years and over with Mini Mental State Exam score [greater than or equal to] 20, were consecutively enrolled over a 12-month period. Data on health, functional, cognitive, affective and spiritual status were collected upon admission. Interviews using the SDAT (score from 0 to 15, higher scores indicating higher distress) were conducted by a trained doctor. Factor analysis, measures of internal consistency (inter-item and item-to-total correlations, Cronbach alpha), and reliability (intra-rater and inter-rater) were performed. Criterion-related validity was assessed using the Functional Assessment of Chronic Illness Therapy-Spiritual well-being (FACIT-Sp) and the question: Are you at peace? - as criterion-standard. RESULTS AND DISCUSSION: SDAT scores ranged from 1 to 12 (mean 5.1 ± 1.9). Overall, 62.5 % (48/72) of the patients reported some spiritual distress on SDAT total score and 37.5% (24/85) reported at least one severe unmet spiritual need. A two-factor solution explained 52 % of the variance. Inter-item correlations ranged from 0.11 to 0.38 (eight out of ten with p 0.05). Item-to-total correlations ranged from 0.57 to 0.64 (all p 0.001). Cronbach alpha was acceptable (0.60). Intra-rater and inter-rater reliabilities were high (Intraclass Correlation Coefficients ranging from 0.78 to 0.93. Compared with patients showing no severely unmet spiritual need, patients with at least one severe unmet spiritual need had higher odds of occurrence of a family meeting (95 %CI 1.3-15.8, P = 0.02) and were more often discharged to a nursing home (12.3 % vs. 3.1 %; P = 0.027). CONCLUSION(S): SDAT has acceptable psychometrics properties and appears to be a valid and reliable instrument to assess spiritual distress in elderly hospitalized patients.]
Monod, S., Martin, E., Spencer, B., Rochat, E. and Bula, C. "Validation of the Spiritual Distress Assessment Tool in older hospitalized patients." BMC Geriatrics (March 29, 2012): 12:13 [electronic journal article designation]. [(Abstract:) BACKGROUND: The Spiritual Distress Assessment Tool (SDAT) is a 5-item instrument developed to assess unmet spiritual needs in hospitalized elderly patients and to determine the presence of spiritual distress. The objective of this study was to investigate the SDAT psychometric properties. METHODS: This cross-sectional study was performed in a Geriatric Rehabilitation Unit. Patients (N = 203), aged 65 years and over with Mini Mental State Exam score >= 20, were consecutively enrolled over a 6-month period. Data on health, functional, cognitive, affective and spiritual status were collected upon admission. Interviews using the SDAT (score from 0 to 15, higher scores indicating higher distress) were conducted by a trained chaplain. Factor analysis, measures of internal consistency (inter-item and item-to-total correlations, Cronbach alpha), and reliability (intra-rater and inter-rater) were performed. Criterion-related validity was assessed using the Functional Assessment of Chronic Illness Therapy-Spiritual well-being (FACIT-Sp) and the question "Are you at peace?" as criterion-standard. Concurrent and predictive validity were assessed using the Geriatric Depression Scale (GDS), occurrence of a family meeting, hospital length of stay (LOS) and destination at discharge. RESULTS: SDAT scores ranged from 1 to 11 (mean 5.6 +/- 2.4). Overall, 65.0% (132/203) of the patients reported some spiritual distress on SDAT total score and 22.2% (45/203) reported at least one severe unmet spiritual need. A two-factor solution explained 60% of the variance. Inter-item correlations ranged from 0.11 to 0.41 (eight out of ten with P < 0.05). Item-to-total correlations ranged from 0.57 to 0.66 (all P < 0.001). Cronbach alpha was acceptable (0.60). Intra-rater and inter-rater reliabilities were high (Intraclass Correlation Coefficients ranging from 0.87 to 0.96). SDAT correlated significantly with the FACIT-Sp, "Are you at peace?", GDS (Rho -0.45, -0.33, and 0.43, respectively, all P < .001), and LOS (Rho 0.15, P = .03). Compared with patients showing no severely unmet spiritual need, patients with at least one severe unmet spiritual need had higher odds of occurrence of a family meeting (adjOR 4.7, 95%CI 1.4-16.3, P = .02) and were more often discharged to a nursing home (13.3% vs 3.8%; P = .027). CONCLUSIONS: SDAT has acceptable psychometrics properties and appears to be a valid and reliable instrument to assess spiritual distress in elderly hospitalized patients.]
Monod, S. M., Rochat, E., Bula, C. J., Jobin, G., Martin, E. and Spencer, B. "The spiritual distress assessment tool: an instrument to assess spiritual distress in hospitalised elderly persons." BMC Geriatrics (December 13, 2010): 10:88 [electronic journal article designation]. [(Abstract:) BACKGROUND: Although spirituality is usually considered a positive resource for coping with illness, spiritual distress may have a negative influence on health outcomes. Tools are needed to identify spiritual distress in clinical practice and subsequently address identified needs. This study describes the first steps in the development of a clinically acceptable instrument to assess spiritual distress in hospitalized elderly patients. METHODS: A three-step process was used to develop the Spiritual Distress Assessment Tool (SDAT): 1) Conceptualisation by a multidisciplinary group of a model (Spiritual Needs Model) to define the different dimensions characterizing a patient's spirituality and their corresponding needs; 2) Operationalisation of the Spiritual Needs Model within geriatric hospital care leading to a set of questions (SDAT) investigating needs related to each of the defined dimensions; 3) Qualitative assessment of the instrument's acceptability and face validity in hospital chaplains. RESULTS: Four dimensions of spirituality (Meaning, Transcendence, Values, and Psychosocial Identity) and their corresponding needs were defined. A formalised assessment procedure to both identify and subsequently score unmet spiritual needs and spiritual distress was developed. Face validity and acceptability in clinical practice were confirmed by chaplains involved in the focus groups. CONCLUSIONS: The SDAT appears to be a clinically acceptable instrument to assess spiritual distress in elderly hospitalised persons. Studies are ongoing to investigate the psychometric properties of the instrument and to assess its potential to serve as a basis for integrating the spiritual dimension in the patient's plan of care.] [Available freely online from the journal, and it is also reprinted in Fitchett, G., White, K. and Lyndes, K., eds., Evidence-Based Healthcare Chaplaincy: A Research Reader (London and Philadelphia: Jessica Kingelsey Publishers, 2018),
pp. 116-134.]
II. Critical to instrument development are the concepts of reliability and validity. Our authors make a fair case for the PC-7, based upon promising indicators that it is reliable [--see MS p. 4 for testing of reliability] and valid [--see MS p. 5 for the discussion of face validity]. There are many resources to explain these concepts, but one that may be useful to chaplains comes from the University of Central Florida: psychology course material on Measurement Concepts. Another is a text on Reliability and Validity of Measurement from BCcampus, which supports post-secondary institutions of British Columbia, Canada.
III. The following sources relate to the various items of PC-7. Note that the items of "Issues related to treatment decisions" and "Other dimensions" were added to the measure as a result of a general decision by the research team.
Delgado-Guay, M. O., Chisholm, G., Williams, J., Frisbee-Hume, S., Ferguson, A. O. and Bruera, E. "Frequency, intensity, and correlates of spiritual pain in advanced cancer patients assessed in a supportive/palliative care clinic." Palliative and Supportive Care 14, no. 4 (August 2016): 341-348. This article supported PC-7 item of "Religious/spiritual struggle." [(Abstract:) OBJECTIVE: Regular assessments of spiritual distress/spiritual pain among patients in a supportive/palliative care clinic (SCPC) are limited or unavailable. We modified the Edmonton Symptom Assessment Scale (ESAS) by adding spiritual pain (SP) to the scale (0 = best, 10 = worst) to determine the frequency, intensity, and correlates of self-reported SP (>=1/10) (pain deep in your soul/being that is not physical) among these advanced cancer patients. METHOD: We reviewed 292 consecutive consults of advanced cancer patients (ACPs) who were evaluated at our SCPC between October of 2012 and January of 2013. Symptoms were assessed using the new instrument (termed the ESAS-FS). RESULTS: The median age of patients was 61 (range = 22-92). Some 53% were male; 189 (65%) were white, 45 (15%) African American, and 34 (12%) Hispanic. Some 123 of 282 (44%) of ACPs had SP (mean (95% CI) = 4(3.5-4.4). Advanced cancer patients with SP had worse pain [mean (95% CI) = 5.3(4.8, 5.8) vs. 4.5(4.0, 5.0)] (p = 0.02); depression [4.2(3.7, 4.7) vs. 2.1(1.7, 2.6), p < 0.0001]; anxiety [4.2(3.6, 4.7) vs. 2.5(2.0, 3.0), p < 0.0001]; drowsiness [4.2(3.7, 4.7) vs. 2.8(2.3, 3.2), p < 0.0001]; well-being [5.4(4.9, 5.8) vs. 4.5(4.1, 4.9), p = 0.0136]; and financial distress (FD) [4.4(3.9, 5.0) vs. 2.2(1.8, 2.7), p < 0.0001]. Spiritual pain correlated (Spearman) with depression (r = 0.45, p < 0.0001), anxiety (r = 0.34, p < 0.0001), drowsiness (r = 0.26, p < 0.0001), and FD (r = 0.44, p < 0.0001). Multivariate analysis showed an association with FD [OR (95% Wald CI) = 1.204(1.104-1.313), p < 0.0001] and depression [1.218(1.110-1.336), p < 0.0001]. The odds that patients who had SP at baseline would also have SP at follow-up were 182% higher (OR = 2.82) than for patients who were SP-negative at baseline (p = 0.0029). SP at follow-up correlated with depression (r = 0.35, p < 0.0001), anxiety (r = 0.25, p = 0.001), well-being (r = 0.27, p = 0.0006), nausea (r = 0.29, p = 0.0002), and financial distress (r = 0.42, p < 0.0001). SIGNIFICANCE OF RESULTS: Spiritual pain, which is correlated with physical and psychological distress, was reported in more than 40% of ACPs. Employment of the ESAS-FS allows ACPs with SP to be identified and evaluated in an SCPC. More research is needed.]
Erikson, E. H. and Erikson, J. M. The Life Cycle Completed: Extended Version with New Chapters on the Ninth Stage of Development. W. W. Norton and Co., 1997. This book supported PC-7 items of "Need for meaning" and "Need for integrity, a legacy."
Exline, J. J. "Religious and spiritual struggles." In Pargament, K. I., Exline, J. J. and Jones, J. W., eds.,APA handbook of psychology, religion, and spirituality (Vol. 1): Context, theory, and research, American Psychological Association (2013): 459-475. This book chapter supported PC-7 item of "Religious/spiritual struggle." [(Abstract:) For many people, religion and spirituality constitute a major domain of life, one that may influence other domains (e.g., work, relationships, self-regulation). As with any dimension of human experience, religion and spirituality hold the potential for both joys and struggles. Religion and spirituality can help to meet human needs for meaning, comfort, and attachment. Yet these benefits do not rule out the possibility of strain and difficulty in religious and spiritual life. The past decade has witnessed a veritable tidal wave of empirical research on religious and spiritual struggle. Although several literature reviews were published in the first part of the decade, along with a meta-analysis, the literature has more than doubled since these reviews were completed. There are now several hundred relevant entries in the PsycINFO database alone. Many of the articles to date have focused on links between struggle and other indexes of emotional and physical well-being. Although space constraints do not permit an exhaustive review, the aim of this chapter is to orient readers to this burgeoning area of research. The first section describes what religious and spiritual struggles are and how they have been assessed. The second section briefly describes some situational and personal factors that might precipitate struggle. The third section reviews research on the broad concept of religious and spiritual struggle and how it relates to well-being, with an emphasis on studies from the past decade. This section also discusses the controversial question of whether struggle can lead to growth or other benefits. The fourth section briefly describes several types of specific struggles, highlighting select studies and suggesting topics for future research.]
MacKinlay, E. B. and Trevitt, C. "Spiritual care and ageing in a secular society." Medical Journal of Australia 186, no. 10 Suppl. (May 21, 2007): S74-76. This book supported PC-7 item of "Need for meaning." [(Abstract:) Providing spiritual care is about tapping into the concept of spirituality: core meaning, deepest life meaning, hope and connectedness. The search for meaning, connectedness and hope becomes more significant as older people are faced with the possibilities of frailty, disability and dementia. Spirituality, ageing and meaning in life can be discussed in the context of an alternative view of "successful ageing". A model of spiritual tasks in older age can help explain the spiritual dimension and provide a starting point for spiritual assessment.]
Pargament, K. I., Smith, B. W., Koenig, H. G. and Perez, L. "Patterns of positive and negative religious coping with major life stressors." Journal for the Scientific Study of Religion 37, no. 4 (1998): 710-724. This article supported PC-7 item of "Religious/spiritual struggle." [(Abstract:) Used exploratory and confirmatory factor analyses to identify positive and negative patterns of religious coping methods, develop a brief measure of these religious coping patterns, and examine their implications for health and adjustment. Participants were 296 church members (mean age 59.3 yrs) coping with the Oklahoma City bombing, 540 college students coping with major life stressors, and 551 elderly hospitalized patients (aged 55-97 yrs) coping with serious medical illnesses. A 14-item measure of positive and negative patterns of religious coping methods (called Brief RCOPE) was constructed. The positive pattern consisted of religious forgiveness, seeking spiritual support, collaborative religious coping, spiritual connection, religious purification, and benevolent religious reappraisal. The negative pattern was defined by spiritual discontent, punishing God reappraisals, interpersonal religious discontent, demonic reappraisal, and reappraisal of God's powers. As predicted, people made more use of the positive than the negative religious coping methods. Furthermore, the 2 patterns had different implications for health and adjustment.]
Steinhauser, K. E., Clipp, E. C., Bosworth, H. B., McNeilly, M., Christakis, N. A., Voils, C. I. and Tulsky, J. A. "Measuring quality of life at the end of life: validation of the QUAL-E." Palliative and Supportive Care 2, no. 1 (March 2004): 3-14. This article supported PC-7 items of "Need for meaning," "Need for integrity, a legacy," "Concerns about family," and "Concern about dying." [(Abstract:) OBJECTIVES: To validate the QUAL-E, a new measure of quality of life at the end of life. METHODS: We conducted a cross-sectional study to assess the instrument's psychometric properties, including the QUAL-E's associations with existing measures, evaluation of robustness across diverse sample groups, and stability over time. The study was conducted at the VA and Duke University Medical Centers, Durham, North Carolina, in 248 patients with stage IV cancer, congestive heart failure with ejection fraction < or = 20%, chronic obstructive pulmonary disease with FEV1 < or = 1.0 1, or dialysis-dependent end stage renal disease. The main outcome measures included QUAL-E and five comparison measures: FACIT quality of life measure, Missoula-VITAS Quality of Life Index, FACIT-SP spirituality measures, Participatory Decision Making Scale (MOS), and Duke EPESE social support scales. RESULTS: QUAL-E analyses confirmed a four-domain structure (25 items): life completion (alpha = 0.80), symptoms impact (alpha = 0.87), relationship with health care provider (alpha = 0.71), and preparation for end of life (alpha = 0.68). Convergent and discriminant validity were demonstrated with multiple comparison measures. Test-retest reliability assessment showed stable scores over a 1-week period. SIGNIFICANCE OF RESULTS: The QUAL-E, a brief measure of quality of life at the end of life, demonstrates acceptable validity and reliability, is easy to administer, performs consistently across diverse demographic and disease groups, and is acceptable to seriously ill patients. It is offered as a new instrument to assist in the evaluation of the quality and effectiveness of interventions targeting improved care at the end of life.]
SEE ALSO A MORE RECENT ARTICLE ON THE QUAL-E:
Wilkinson, A., Slatyer, S., McCullough, K. and Williams, A. "Exploring the quality of life at the end of life (QUAL-E) instrument with Australian palliative care hospital patients: hurdles and directions." Journal of Palliative Care. 30, no. 1 (2014): 16-23. [The provision of care that enhances the quality of life at the end of life is a fundamental goal of palliative care services. This pilot study explored the application of the Quality of Life at the End of Life (QUAL-E) instrument in a sample of 52 patients who were hospitalized in two metropolitan Western Australian hospitals. Participants were given the option to complete the QUAL-E either as a self-report (n = 9, 17.3 percent) or, aided by a research assistant, as a structured interview (n = 43, 82.7 percent). The instrument demonstrated patient acceptability and face validity, particularly when it was administered with the assistance of a research assistant. Despite having difficulty with some questions, patients expressed their appreciation at being given the opportunity to contribute to the research and to reflect upon and give voice to their thoughts and feelings. Health practitioners indicated that the instrument could be a valuable tool for holistic assessment and service evaluation. We suggest that minor changes be made to the QUAL-E before it is used further in an Australian context; we also recommend that this instrument be tested in other settings and populations.] [This article is available freely online.]
IV. Though two years old, the following articles on the State of the Science of Spirituality and Palliative Care Research are an excellent resource for anyone working in the field. These were highlighted as our October 2017 Article-of-the-Month.
Steinhauser, K. E., Fitchett, G., Handzo, G. F., Johnson, K. S., Koenig, H. G., Pargament, K. I., Puchalski, C. M., Sinclair, S., Taylor, E. J. and Balboni, T. A. "State of the Science of Spirituality and Palliative Care Research Part I: Definitions, Measurement, and Outcomes." Journal of Pain and Symptom Management 53, no. 3 (September 2017): 428-440. [(Abstract:) The State of the Science in Spirituality and Palliative Care was convened to address the current landscape of research at the intersection of spirituality and palliative care and to identify critical next steps to advance this field of inquiry. Part I of the SOS-SPC two-part series focuses on questions of 1) What is spirituality? 2) What methodological and measurement issues are most salient for research in palliative care? And 3) What is the evidence relating spirituality and health outcomes? After describing current evidence we make recommendations for future research in each of the three areas of focus. Results show wide variance in the ways spirituality is operationalized and the need for definition and conceptual clarity in research in spirituality. Furthermore, the field would benefit from hypothesis-driven outcomes research based on a priori specification of the spiritual dimensions under investigation and their longitudinal relationship with key palliative outcomes, the use of validated measures of predictors and outcomes, and rigorous assessment of potential confounding variables. Finally, results highlight the need for research in more diverse populations.]
Balboni, T. A., Fitchett, G., Handzo, G. F., Johnson, K. S., Koenig, H. G., Pargament, K. I., Puchalski, C. M., Sinclair, S., Taylor, E. J. and Steinhauser, K. E. "State of the Science of Spirituality and Palliative Care Research Part II: Screening, Assessment, and Interventions." Journal of Pain and Symptom Management 53, no. 3 (September 2017): 441-453. [(Abstract:) The State of the Science in Spirituality and Palliative Care was convened to address the current landscape of research at the intersection of spirituality and palliative care and to identify critical next steps to advance this field of inquiry. Part II of the SOS-SPC report addresses the state of extant research and identifies critical research priorities pertaining to the following questions: 1) How do we assess spirituality? 2) How do we intervene on spirituality in palliative care? And 3) How do we train health professionals to address spirituality in palliative care? Findings from this report point to the need for screening and assessment tools that are rigorously developed, clinically relevant, and adapted to a diversity of clinical and cultural settings. Chaplaincy research is needed to form professional spiritual care provision in a variety of settings, and outcomes assessed to ascertain impact on key patient, family, and clinical staff outcomes. Intervention research requires rigorous conceptualization and assessments. Intervention development must be attentive to clinical feasibility, incorporate perspectives and needs of patients, families, and clinicians, and be targeted to diverse populations with spiritual needs. Finally, spiritual care competencies for various clinical care team members should be refined. Reflecting those competencies, training curricula and evaluation tools should be developed, and the impact of education on patient, family, and clinician outcomes should be systematically assessed.]
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