August 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
Bahraini, S., Gifford, W., Graham, I. D., Wazni, L., Bremault-Phillips, S., Hackbusch, R., Demers, C. and Egan, M. "The accuracy of measures in screening adults for spiritual suffering in health care settings: a systematic review." Palliative and Supportive Care (2019): online ahead of print, August 7, 2019; 14pp.
SUMMARY and COMMENT: Spirituality & Health research has now developed in some areas to the extent that studies may be brought together and analyzed with one another for quite productively cumulative insight. This affirms the foundation of empirical evidence that has been built over the past several decades and indicates reasonable evolution for a field of inquiry contending with the methodological complexity of behavioral health, the conceptual and historical intricacies of religion/spirituality, and the myriad ways this may all be manifest across diverse individuals. One of the most important studies of recent years has been 2017's "Determining Best Methods to Screen for Religious/Spiritual Distress" [King, S. D. W., et al., Supportive Care in Cancer 25(2):471-479], which was our November 2016 Article of the Month, evaluating the best brief screens for spiritual distress among six proven contenders. The article for this present month is much in the same vein and attempts to "synthesize the evidence regarding the accuracy of measures used to screen adults for spiritual suffering" [MS p. 2, emphasis added], including that 2017 study. This review and assessment is valuable for research chaplains by raising methodological issues and providing technical critique, but it is also useful for clinical chaplains in lifting up specific assessments and offering practical guidance about selection.
The authors construe the idea of "spiritual suffering" broadly [see MS p. 1 and Table 1, MS p. 2] and practically: any conceptualization by which "health care providers deem it necessary to refer patients for consultations and interventions by specialized spiritual care providers" [MS p. 1], yet they focus only on the accuracy of measures. That narrow focus, they concede, does not take into account two other "appropriate" criteria for selecting a measure: brevity and simplicity [--see MS p. 13]. They identify 5 key articles [--see Items of Related Interest, §I, below, for the abstracts] out of a literature search that yielded 7,979. Those five:
- Fitchett, G., Murphy, P. and King, S. D. W. "Examining the validity of the Rush Protocol to screen for religious/spiritual struggle." Journal of Health Care Chaplaincy 23, no. 3 (July-September 2017): 98-112.
- Fitchett, G. and Risk, J. L. "Screening for spiritual struggle." Journal of Pastoral Care and Counseling 63, nos. 1-2 (2009): 4.1-12 [online journal article designation].
- Grossoehme, D. H. and Fitchett, G. "Testing the validity of a protocol to screen for spiritual struggle among parents of children with cystic fibrosis." Research in the Social Scientific Study of Religion 24 (2013): 281-307.
- King, S. D. W., Fitchett, G., Murphy, P. E., Pargament, K. I., Harrison, D. A. and Loggers, E. T. "Determining best methods to screen for religious/spiritual distress." Supportive Care in Cancer 25, no. 2 (February 2017): 471-479.
- Schultz, M., Meged-Book, T., Mashiach, T. and Bar-Sela, G. "Distinguishing between spiritual distress, general distress, spiritual well-being, and spiritual pain among cancer patients during oncology treatment." Journal of Pain and Symptom Management 54, no. 1 (2017): 66-73.
These articles were evaluated for methodological quality using the QUADAS-2 (Quality Assessment of Diagnostic Accuracy Studies) tool [--see Items of Related Interest, §IV, below], which assesses for risk of bias according to the following criteria:
- Was a consecutive for random sample of patients enrolled?
- Was a case-control design avoided?
- Did the study avoid inappropriate exclusions?
- Were the index test results interpreted without knowledge of the results of the reference standard?
- If a threshold was used, was it pre-specified?
- Is the reference standard likely to correctly classify the target condition?
- Were the reference standard results interpreted without knowledge of the results of the index test?
- Was there an appropriate interval between the index test and reference standard?
- Did all patients receive the same reference standard?
- Were all patients included in the analysis?
The evaluation is lined out in a table [MS p. 6]. All of the studies were adjudged to be at some risk for bias [--see the text on MS p. 3], if at a relatively low level under the circumstances.
Out of these five articles, accuracy data was extracted for 24 measures that had "been evaluated in a rigorous and systematic way to determine spiritual suffering" [MS p. 7]. The authors comment that this "substantial number" of measures "highlight[s] clinicians' and researchers' recognition of the importance of using evidence-based measures" ..."[d]riven by demands to integrate spiritual care into routine patient care" [MS p. 7].
Among the findings:
- "Prevalence of spiritual suffering, as identified by reported reference tests, ranged from 13.6% to 32%." [MS p. 6]
- "None of the studies reported adverse effects from screening with spiritual screening measures." [MS p. 7]
- "...[T]he Negative Religious Coping measure (N-RCOPE) (n = 3 studies) and the Rush protocol (n = 4 studies) were the most commonly used reference test[s] and spiritual screening measure[s]." However, the authors comment that the N-RCOPE can underestimate spiritual suffering, because it revolves around spiritual struggles with the Divine and does not concentrate on spiritual struggles that are interpersonal or intrapersonal in nature. [--See MS p. 7]
- Of the 24 measures addressed in the selected articles, the highest sensitivity (82%-87%) was found to come from a two-item measure of Meaning/Joy & Self-Described Struggle, and the highest specificity (81%-90%) from the revised Rush protocol. These were all identified in the King, et al., 2017 article. [--See MS p. 7]
- The greatest balance of sensitivity (74%) and specificity (76%) was found to be the single item Spiritual Pain measure addressed in the Schultz, et al., 2017 article.
A Summary Table of the Screening Measures [Table 4, MS pp. 8-12] conveniently lays out all 24 measures.
Perhaps, though, the most significant point in the article is the observation that "there currently is no tool that can be used as a 'true' gold standard for measuring spiritual suffering" [MS p. 7]. In light of this:
Currently, assessment by professional specialists who are trained in spiritual care such as psychologists, healthcare chaplains, or medical social workers, [is] the only true gold standard for identifying spiritual suffering as they have the professional skills and judgment to determine high levels of spiritual suffering.... Only Fitchett and Risk (2009) used chaplain assessment as a reference test. ...We recommend the use of specialists' assessment in future research as a reference test to confirm the presence of spiritual suffering identified by spiritual screening measures. [MS p. 12]
The authors hold that "[a]lthough evidence for the effectiveness of identified spiritual screening measures is limited, the measures can nonetheless be valuable in initiating a discussion with patients and consequently initiating a conversation with providers [about] spiritual suffering" [MS p. 12]. They specifically caution:
Complete dependency on the results of the screening measures without using clinical judgment and building a relationship with patients may result in a failure to detect spiritual suffering that requires referral to spiritual care specialists. We suggest that clinicians with limited training in the spiritual domain collaborate with specialists in spiritual care who have additional expertise in determining spiritual suffering. Specialists can advise members of the healthcare team about verbal and non-verbal indicators of spiritual suffering in patients. [MS p. 13]
"This research is an important step toward addressing some of the practical issues surrounding the provision of spiritual care and referring patients for specialized spiritual services" [MS p. 7]. Its guidance for specific measures may be limited, but that is largely because existing measures are in need of more exhaustive testing. Nevertheless, the authors set out a course for future study and practice that places critical importance on the expertise of spiritual care specialists. If chaplains sometimes may feel that their professional discernment is increasingly sidelined or supplanted by formal measures -- as the present reader has heard personally many times -- then this article affirms somewhat on counterpoint that a chaplain's assessment remains the standard for recognizing spiritual suffering by which formal measures still need to be judged.
Supplementary material for this article is available freely from the journal website.
Suggestions for Use of the Article for Student Discussion:
This month's article might seem to be of interest primarily to research chaplains, and indeed there is a great deal here for researchers to consider, but it should engage CPE students in a number of ways. First, there could be an around-the-room about understandings of "spiritual suffering." What do the students think that it entails? The opening paragraph of the article could be useful here, as it begins with a definitional characterization, names several connected concepts, and ends with a pragmatic parameter. The search terms in Table 1 [MS p. 2] may also be worth a look. It is beyond the scope of the article to debate the various notions or even to disambiguate between them, but do students agree that there is enough conceptual coherence for the authors to have pressed ahead as they did? Second, are students clear about the goal of screening as opposed to assessment and intervention provided by a chaplain or other spiritual care professional? Students might think about the potential dual purpose of screening as not only detecting spiritual suffering but instituting a means to raise awareness of the issue among the non-chaplains who see patients. Third, the group might discuss the following point:
Fitchett and colleagues (2000) noted that not all patients who believe they are having spiritual suffering would benefit from specialized spiritual care or a referral to a spiritual specialist as many may have basic spiritual or religious needs (such as praying, presence of beloved ones) that can be addressed by their family members or non-specialists. It is therefore important that screening measures used in clinical practice can differentiate between high levels of spiritual suffering that require a specialist's referral and other spiritual needs that can be addressed by non-specialists. [MS p. 12]
It should be recognized that this is our authors' representation of an idea in Fitchett, G., Meyer, P. M. and Burton, L. A., "Spiritual care in the hospital: Who requests it? Who needs it?" Journal of Pastoral Care 54, no. 2 (2000): 173-186; it is not a quote from the source, and it may not convey the original authors' message. (Fitchett and colleagues wrote of the need for chaplains to consider whether patients were already receiving adequate spiritual care from their congregations, not whether their needs "can" be addressed by non-chaplains.) Still, the role of screening in the triage of patient needs, given chaplains' limited time for intervention, is worth discussion. Fourth, students might talk about the sheer variety of screens given in Table 4 [MS pp. 8-12] and look at the screens that our featured article highlight: especially table items #2, #11, and #22. For those with experience at research, Table 4, as well as Table 2 (Characteristics of Included Studies) and Table 3 (Critical Appraisal Checklist for Diagnostic Test Accuracy Studies Regarding the Risk of Bias [according to the QUADAS-2 tool]) provide much information. Also for those interested in research, the particular items of the QUADAS-2 tool may be intriguing [--see Items of Related Interest, §IV, below]. Finally, what really is the current place of formal screens if "the only true gold standard for identifying spiritual suffering" is the assessment by professional specialists like chaplains? Are the students willing and able to accept this responsibility?
Related Items of Interest:
I. The five key articles identified in this month's featured article are:
Fitchett, G., Murphy, P. and King, S. D. W. [Rush University Medical Center, Chicago, IL; and Seattle Cancer Care Alliance, WA]. "Examining the validity of the Rush Protocol to screen for religious/spiritual struggle." Journal of Health Care Chaplaincy 23, no. 3 (July-September 2017): 98-112. [(Abstract:) Effective deployment of limited spiritual care resources requires valid and reliable methods of screening that can be used by nonchaplain health care professionals to identify and refer patients with potential religious/spiritual (R/S) need. Research regarding the validity of existing approaches to R/S screening is limited. In a sample of 1,399 hematopoietic stem cell transplant survivors, we tested the validity of the Rush Protocol and two alternative versions of it. The negative religious coping subscale of the Brief RCOPE provided the reference standard. Based on the Protocol, 21.9% of the survivors were identified as having potential R/S struggle. The sensitivity of the Protocol was low (42.1%) and the specificity was marginally acceptable (81.3%). The sensitivity and specificity of the two alternative versions were similar to those for the unmodified Protocol. Further research with the Rush Protocol, and other models, should be pursued to develop the best evidence-based approaches to R/S screening.]
Fitchett, G. and Risk, J. L. "Screening for spiritual struggle." Journal of Pastoral Care and Counseling 63, nos. 1-2 (2009): 4.1-12 [online journal article designation]. [A growing body of research documents the harmful effects of religious or spiritual struggle among patients with a wide variety of diagnoses. We developed a brief screening protocol for use in identifying patients who may be experiencing religious/spiritual struggle, as well as patients who would like a visit from a chaplain. We describe the results of a pilot study in which non-chaplain healthcare colleagues administered the screening protocol to patients admitted to an acute medical rehabilitation unit. The protocol identified 7% of the patients as possibly experiencing religious/spiritual struggle. Follow up spiritual assessments by the chaplain confirmed religious/spiritual struggle in all but one of these patients and also identified additional cases of religious/spiritual struggled not identified by the protocol. In addition to areas for future research, the authors describe how using a protocol to screen patients for religious/spiritual can make important contributions to spiritual care.]
Grossoehme, D. H. and Fitchett, G. "Testing the validity of a protocol to screen for spiritual struggle among parents of children with cystic fibrosis." Research in the Social Scientific Study of Religion 24 (2013): 281-307.
[(Abstract:) Spirituality is important to many Americans and is used to cope with adverse events. Some forms of spiritual coping are maladaptive or troubling, and are known as negative spiritual coping or spiritual struggle. These forms of spirituality are often associated with poorer physical and mental health outcomes. Thus, in clinical contexts there is a need to identify persons who may be experiencing spiritual struggle and, if indicated, offer spiritual care that may address that struggle. Twenty-two parents of children with cystic fibrosis (CF) completed semi-structured interviews and questionnaires exploring spirituality's role in their child's illness. Interviews included oral administration of a protocol to screen for spiritual struggle. The parents also completed the negative religious coping subscale of the Brief RCOPE, a commonly used measure of spiritual struggle. Descriptive statistics were obtained. The screening protocol identified 18% of the parents as potentially having spiritual struggle. Thirty-two percent had negative religious coping scores suggestive of spiritual struggle. Comparison of results with both measures found the screening protocol had good specificity (87%) but relatively low sensitivity (29%). Using either measure, indications of spiritual struggle were associated with higher levels of depressive symptoms. The screener's administration was acceptable and feasible. The low sensitivity may be due in part to differences between the focus of the screener and that of the negative religious coping subscale, which focuses on struggle with the Divine. Further work is needed to establish the best approach to screening for spiritual struggle.]
King, S. D. W., Fitchett, G., Murphy, P. E., Pargament, K. I., Harrison, D. A. and Loggers, E. T. "Determining best methods to screen for religious/spiritual distress." Supportive Care in Cancer 25, no. 2 (February 2017): 471-479. [(Abstract:) PURPOSE: This study sought to validate for the first time a brief screening measure for religious/spiritual (R/S) distress given the Commission on Cancer's mandated screening for psychosocial distress including spiritual distress. METHODS: Data were collected in conjunction with an annual survey of adult hematopoietic cell transplantation (HCT) survivors. Six R/S distress screeners were compared to the Brief RCOPE, Negative Religious Coping subscale as the reference standard. We pre-specified validity as a sensitivity score of at least 85%. As no individual measure attained this, two post hoc analyses were conducted: analysis of participants within 2 years of transplantation and of a simultaneous pairing of items. Data were analyzed from 1449 respondents whose time since HCT was 6 months to 40 years. RESULTS: For the various single-item screening protocols, sensitivity ranged from 27 (spiritual/religious concerns) to 60% (meaning/joy) in the full sample and 25 (spiritual/religious concerns) to 65% (meaning/joy) in a subsample of those within 2 years of HCT. The paired items of low meaning/joy and self-described R/S struggle attained a net sensitivity of 82% in the full sample and of 87% in those within 2 years of HCT but with low net specificities. CONCLUSIONS: While no single-item screener was acceptable using our pre-specified sensitivity value of 85%, the simultaneous use of meaning/joy and self-described struggle items among cancer survivors is currently the best choice to briefly screen for R/S distress. Future research should validate this and other approaches in active treatment cancer patients and survivors and determine the best times to screen.] [This article was featured as the November 2016 Article-of-the-Month.]
Schultz, M., Meged-Book, T., Mashiach, T. and Bar-Sela, G. "Distinguishing between spiritual distress, general distress, spiritual well-being, and spiritual pain among cancer patients during oncology treatment." Journal of Pain and Symptom Management 54, no. 1 (2017): 66-73.
[(Abstract:) CONTEXT: Spiritual distress is present in approximately 25% of oncology patients. OBJECTIVES: We examined the extent to which this measure is identical to a variety of other measures, such as spiritual well-being, spiritual injury, spiritual pain, and general distress. METHODS: Structured interview of oncology outpatients over 12 months, approached nonselectively. The presence or absence of spiritual distress was compared against spiritual pain and two spiritual well-being tools: Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being 12-Item Scale (FACIT-Sp-12) and the Spiritual Injury Scale (SIS). We also examined whether a general distress visual analogue scale sufficed to identify spiritual distress. Other questions concerned demographic and clinical data. RESULTS: Of 416 patients approached, 202 completed the interview, of whom 23% reported spiritual distress. All measures showed significant correlation (receiver operating characteristic, area under the curve: SIS 0.79; distress thermometer [DT] 0.68; FACIT-Sp-12 0.67), yet none were identical with spiritual distress (sensitivity/specificity: SIS 64%/79%; spiritual pain 72%/76%; DT 41%/76%; FACIT-Sp-12 57%/72%). Of the FACIT-Sp-12 subscales, only peace correlated with spiritual distress. A significant predictor of spiritual distress was patients' self-evaluation of grave clinical condition (odds ratio 3.3; 95% CI 1.1-9.5). Multivariable analysis of individual measure items suggests an alternative three-parameter model for spiritual distress: not feeling peaceful, feeling unable to accept that this is happening, and perceived severity of one's illness. CONCLUSION: The DT is not sufficient to identify spiritual distress. The peace subscale of FACIT-Sp-12 is a better match than the measure as a whole. The SIS is the best match for spiritual distress, although an imperfect one.]
II. Our authors refer frequently to the Agora Spiritual Care Guideline. This document is formally titled, Spiritual Care: Nation-Wide Guideline, Version 1.0, and was created between 2006-2010 and published in 2013 by a working group in the Netherlands. Agora is an independent information and communication center for palliative care, funded in 2002 by the Ministry of Health, and it functions as a national Dutch support center for palliative care. The Guideline is available in English translation from the European Association of Palliative Care at https://www.eapcnet.eu/Portals/0/SpiritualCareGuideline_English_2014.pdf [--an address different from what is cited in our featured article's bibliography]. The document refers to chaplains throughout, but see especially the section on "Referral to a Healthcare Chaplain" [pp. 20-21], but also the briefer section on "Instruments for Healthcare Chaplains" [p. 15; note that the allusion in the text to the "American consensus document" refers to Puchalski, C., et al., "Improving the quality of spiritual care as a dimension of palliative care: the report of the Consensus Conference," Journal of Palliative Medicine 12, no. 10 (October 2009): 885-904.]
III. A few other recent articles that may help chaplains think about screening for spiritual suffering/distress:
Roze des Ordons, A. L., Sinclair, S., Sinuff, T., Grindrod-Millar, K. and Stelfox, H. T. "Development of a clinical guide for identifying spiritual distress in family members of patients in the Intensive Care Unit." Journal of Palliative Medicine (2019): online ahead of print as of 8/2/19. [(Abstract:) Background: Spirituality is important for many family members of patients in the intensive care unit (ICU). Clinicians without training in spiritual care experience difficulty identifying when family members are experiencing distress of a spiritual nature. Objective: The purpose of this study was to develop a guide to help clinicians working in the ICU identify family members who may benefit from specialized spiritual support. Design: Cross-sectional study. Setting/Subjects: A national sample of spiritual health practitioners, family members, and ICU clinicians. Subjects: A panel of 21 spiritual health practitioners participated in a modified Delphi process to achieve consensus on items that suggest spiritual distress among family members of patients in the ICU through three rounds of remote review followed by an in-person conference and a final round of panelist feedback. Feedback on the final set of items was obtained from an end-user group of four family members and six ICU clinicians. Measurements: Quantitative data were summarized with descriptive statistics. Content analysis was used to analyze written comments. Results: A total of 220 items were iteratively reviewed and rated by panelists. Forty-six items were identified as essential for inclusion and developed into a clinical guide, including an introduction (n = 1), definitions (n = 2), risk factors (n = 10), expressed concerns (n = 12), emotions (n = 7) and behaviors (n = 7) that may suggest spiritual distress, questions to identify spiritual needs (n = 6), and introducing spiritual support (n = 1). Conclusions: We have developed an evidence-informed clinical guide that may help clinicians in the ICU identify family members experiencing spiritual distress.]
Roze des Ordons, A. L., Sinuff, T., Stelfox, H. T., Kondejewski, J. and Sinclair, S. "Spiritual distress within inpatient settings -- a scoping review of patients' and families' experiences." Journal of Pain and Symptom Management 56, no. 1 (2018): 122-145. [(Abstract:) CONTEXT: Spiritual distress contributes to patients' and families' experiences of care. OBJECTIVES: To map the literature on how seriously ill patients and their family members experience spiritual distress within inpatient settings. METHODS: Our scoping review included four databases using search terms "existential" or "spiritual" combined with "angst," "anxiety," "distress," "stress," or "anguish." We included original research describing experiences of spiritual distress among adult patients or family members within inpatient settings and instrument validation studies. Each study was screened in duplicate for inclusion, and the data from included articles were extracted. Themes were identified, and data were synthesized. RESULTS: Within the 37 articles meeting inclusion criteria, we identified six themes: conceptualizing spiritual distress (n = 2), diagnosis and prevalence (n = 7), assessment instrument development (n = 5), experiences (n = 12), associated variables (n = 12), and barriers and facilitators to clinical support (n = 5). The majority of studies focused on patients; two studies focused on family caregivers. The most common clinical settings were oncology (n = 19) and advanced disease (n = 19). Terminology to describe spiritual distress varied among studies. The prevalence of at least moderate spiritual distress in patients was 10%-63%. Spiritual distress was experienced in relation to self and others. Associated variables included demographic, physical, cognitive, and psychological factors. Barriers and facilitators were described. CONCLUSION: Patients' and families' experiences of spiritual distress in the inpatient setting are multifaceted. Important gaps in the literature include a narrow spectrum of populations, limited consideration of family caregivers, and inconsistent terminology. Research addressing these gaps may improve conceptual clarity and help clinicians better identify spiritual distress.]
Sprik, P. J., Walsh, K., Boselli, D. M. and Meadors, P. "Using patient-reported religious/spiritual concerns to identify patients who accept chaplain interventions in an outpatient oncology setting." Supportive Care in Cancer 27, no. 5 (May 2019): 1861-1869. [(abstract:) PURPOSE: The goals of this study were to (1) describe the prevalence and correlates of patient-reported religious/spiritual (R/S) needs in outpatient oncology patients and (2) estimate the associations of R/S concerns with acceptance of an R/S intervention offered by phone. METHODS: This was a retrospective analysis of data collected from distress screenings and spiritual care interventions at an outpatient cancer center from March 1, 2017 to May 9, 2017. Patients (n = 1249) used a tablet to self-report the following R/S concerns: spiritual or religious concern, isolation, struggle to find hope/meaning in life, concern for family, fear of death, shame/guilt, and doubts about faith. Patients were also screened for anxiety, depression, and distress. A chaplain contacted patients that reported one or more R/S concerns to offer R/S interventions via telephone or in person. RESULTS: Approximately one third (29.9%) of surveyed patients indicated at least one R/S need. Younger age, female gender, anxiety, depression, and distress were associated with indication of specific R/S concerns. Fear of death (OR 1.64 [1.02, 2.66], p = 0.043), struggle to find meaning/hope in life (OR 2.47 [1.39, 4.39], p = 0.002), and anxiety (p = 1.003) were associated with increased odds of intervention acceptance. CONCLUSION: Effective screening practices are needed for chaplains to prioritize patients most in need. This exploratory study suggests that screening for struggle to find meaning/hope in life, fear of death, and anxiety will help chaplains identify patients who have R/S concerns and will likely accept R/S interventions. Developing effective telehealth practices like this is an important direction for the field.] [This article was our October 2018 Article-of-the-Month.]
IV. Our featured authors chose to evaluate the risk of bias in the five identified articles by the QUADAS-2 tool. The tool itself is open to challenge for its capacity to access studies accuracy accurately (so to speak), but it does provide a thoughtful framework for understanding types of bias and their effects. For more information, see the QUADAS website from the University of Bristol. Chaplains interested in applying the tool to their own projects may appreciate a worksheet/checklist from the National Institute for Health and Care Excellence (UK), based directly upon QUADAS-2.
To get a broad and relatively simple picture of main types of biases in research, see: Roever, L., "Types of bias in studies of diagnostic test accuracy," Evidence Based Medicine and Practice 2, no. 1 (2016): DOI: 10.4172/2471-9919.1000e113 [online journal article designation]. This is a brief tabular listing and is available freely online.
Also, chaplains may find interesting the Catalog of Biases website and the array of resources from the larger website of the Centre for Evidence-Based Medicine.