A Psychometric Evaluation of Measures of Spirituality Validated in Culturally Diverse Palliative Care Populations

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<ul><li><p>Review Article</p><p>A Psychometric Evaluation of Measuresof Spirituality Validated in Culturally DiversePalliative Care Populations</p><p>inclusion criteria. Twenty-four tools demonstrated good content validity and 12</p><p>Kingdom. E-mail:</p><p>6, 2011.</p><p>604 Journal of Pain and Symptom Management Vol. 42 No. 4 October 2011 2011 U.S. Cancer Pain Relief CommitteePublished by Elsevier Inc. All rights reserved.</p><p>0885-3924/$ - see front matterdoi:10.1016/j.jpainsymman.2011.01.015adequate construct validity, usually because specific hypotheses were not statedand tested. Seven tools demonstrated adequate test-retest reliability; two toolsshowed adequate responsiveness, and two met the interpretability criterion. Dataon the religious faith of the population of validation were available for 11 tools; ofthese, eight were tested in multifaith populations.</p><p>Conclusion. Results suggest that, at present, the McGill Quality of LifeQuestionnaire, the Measuring the Quality of Life of Seriously Ill Patients</p><p>Address correspondence to: Lucy Selman, BA, MPhil,PG Cert Pall Care, Department of Palliative Care,Policy and Rehabilitation, Kings College London,Cicely Saunders Institute, Bessemer Road, Denmark</p><p>Hill, London SE5 9PJ, Unitedlucy.selman@kcl.ac.uk</p><p>Accepted for publication: January 2demonstrated adequate internal consistency. Only eight tools demonstratedResults. A total of 191 articles were identified, yielding 85 tools. Twenty-six tools(representing four families of measures and five individual tools) met theinterpretability), multifaith appropriateness, anLucy Selman, BA, MPhil, PG Cert Pall Care,Richard Siegert, BSc, MSocSci, DipPsych (Clin), PhD,Richard Harding, BSc, MSc, PhD, DipSW, Marjolein Gysels, BA, MA, PhD,Peter Speck, BSc, MA, and Irene J. Higginson, BMedSci, BMBS, PhD, FFPHM, FRCPDepartment of Palliative Care, Policy and Rehabilitation (L.S., R.S., R.H., P.S., I.J.H.), Cicely</p><p>Saunders Institute, Kings College London, London, United Kingdom; and Barcelona Centre for</p><p>International Health Research (CRESIB) (M.G.), University of Barcelona, Barcelona, Spain</p><p>AbstractContext. Despite the need to accurately measure spiritual outcomes in diverse</p><p>palliative care populations, little attention has been paid to the properties of thetools currently in use.</p><p>Objectives. This systematic review aimed to appraise the psychometricproperties, multifaith appropriateness, and completion time of spiritual outcomemeasures validated in multicultural advanced cancer, HIV, or palliative carepopulations.</p><p>Methods. Eight databases were searched to identify relevant validation andresearch studies. A comprehensive search strategy included search terms in threecategories: palliative care, spirituality, and outcome measurement. Inclusioncriteria were: validated in advanced cancer, HIV, or palliative care populations andin an ethnically diverse context. Included tools were evaluated with respect topsychometric properties (validity, reproducibility, responsiveness, and</p><p>d time to complete.</p></li><li><p>le are tl itemsese meopriate622. ved.</p><p>psycho</p><p>in the Brief Reli-ntory (sins, devil,res on the SWBS</p><p>among mainline denominations and Catho-tional bias.d religious biases,ve been identifiede measures.26 Forhich exist where</p><p>ative skew and/or</p><p>Vol. 42 No. 4 October 2011 605Systematic Review and Psychometric Evaluation of Spirituality Measuresand religious bias of spiritual outcome mea-sures is related to inadequate sample represen-tativeness in the validation studies of themeasures. Most tools have been developedand tested in ethnically and religiously homoge-neous samples in the United States, primarilyCaucasian24e27 and Protestant.30e32 Bias results</p><p>lics45 also suggest denominaIn addition to cultural an</p><p>psychometric limitations hain existing spiritual outcomexample, ceiling effects, wthere is considerable negequal amounts of a trait have different probabil-ities of scoring high on that trait.29 The cultural</p><p>among evangelical Christian groups than44In psychometric terms, biased tests are thosein which persons from different groups with</p><p>noted with respect to termsgious Coping (RCOPE) inveand church).43 Higher scobias25e27 and psychometric limitations.26,28not religious.42 Similar concerns have beenQuestionnaire, and the Palliative Outcome Scamultidimensional measures containing spirituapalliative care populations. However, none of thpsychometric criteria, and their multifaith apprtesting. J Pain Symptom Manage 2011;42:604eCommittee. Published by Elsevier Inc. All rights reser</p><p>Key WordsSystematic review, spirituality, outcome measurement,</p><p>IntroductionSpirituality, understood to include existen-</p><p>tial questions relating to meaning and pur-pose, as well as religious belief and practice,often underpins the experience of advancedillness.1e8 Spirituality has been identified asan important concern for patients with incur-able progressive disease, and studies suggestthat many people wish to discuss their beliefswith their physicians.9e11 Within palliativecare, the need to take into account the roleof spirituality is reflected in global policy guid-ance, which stipulates spiritual care provisionand assessment as integral components of themultidimensional care of persons affected byprogressive life-limiting disease.12e17</p><p>The measurement of spiritual outcomes isessential in screening for spiritual distress, iden-tifying spiritual health and providing appropri-ate spiritual support,18e21 service evaluationand quality improvement,22 and for researchpurposes, for example, testing spiritual inter-ventions and investigating the relationship be-tween spiritual variables and other healthoutcomes. With the growth in research in spiri-tuality within health care in recent years,23 thenumber of outcome measurement tools hasproliferated.24 However, existing measureshave been criticized for cultural and religioushe most appropriatefor use in multiculturalasures score perfectly on allness requires further2011 U.S. Cancer Pain Relief</p><p>metrics, culture</p><p>from a lack of fit between the worldview em-bedded in the measure and that of the respon-dent population,28 often because of theuncritical transfer of concepts between culturesor belief systems,33 or the emphasis of irrelevantissues or de-emphasis of issues of impor-tance.27,32 There is evidence from the UnitedStates of differences in how spirituality isconceptualized in Caucasian, Latino, andAfrican-American populations34e36 and thatthis has implications for the validity and appro-priateness of outcome measures in diversepopulations.25,37e39 For example, differencesin the factor structure of the Spiritual Well-Being Scale (SWBS)40,41 in Caucasian andAfrican-American populations suggest culturaldifferences in the concept of spirituality andthe interpretation of scale results37,38 anddraw into question the construct validity of thetool in African-American populations.39 Thelanguage of the SWBS also assumes that reli-gious well-being consists of a close relationshipwith God and that spiritual well-being can bemeasured as a composite score of religiousand existential well-being. Arguably, the SWBSdefines spirituality toonarrowly anddoes not re-flect the spirituality of people of a non-Christianbackground, including atheists, agnostics, andthose who define themselves as spiritual but</p></li><li><p>DSR, ACP Journal Club, DARE, CCTR, CMR,</p><p>606 Vol. 42 No. 4 October 2011Selman et al.most individuals score within one or two stan-dard deviations of the maximum score, havebeen reported for the SWBS among evangelicalpopulations.46 Concerns also have been raisedregarding the construct validity of a number oftools, including the SWBS,44,46 the Quest scale(a measure of religious orientation),47 and thePurpose in Life Test.48</p><p>From a palliative care perspective, an addi-tional problem is that only a limited numberof existing tools have been developed andtested in palliative care populations. Given thespecific spiritual needs and experiences of pa-tients with progressive incurable disease,3 it isessential that the measures used in palliativecare practice and research have been validatedin relevant populations. However, evidence sug-gests this is not the case at present. We recentlypublished results from a comprehensive andsystematic review of tools used to measure spiri-tuality in palliative care, advanced cancer, andHIV populations.49 We found that of 50 differ-ent tools used to measure spiritual outcomesin those populations, only 30 had been psycho-metrically validated in those groups.In our previous publication, we sought to</p><p>guide tool selection by palliative care cliniciansand researchers by focusing on the clinical andcultural characteristics of the populations inwhich tools had been tested. We identifiedand categorized those spiritual outcome mea-surement tools that had been validated in ad-vanced cancer, HIV infection, or palliative carepopulations, and went on to identify those toolsthat had been validated cross-culturally. How-ever, it was beyond the remit of that article to in-vestigate the psychometric properties of theidentified tools, their multifaith appropriate-ness and the burden of completion time theyplace on patients (i.e., additional factors thatare crucial in the selection of measures in palli-ative care populations). Although previous re-views have identified some of the spiritualmeasures used in palliative care research,50,51</p><p>none have evaluated the psychometric proper-ties of the tools in a systematic way.In this article, we present a psychometric eval-</p><p>uationof the cross-culturally validatedmeasuresidentified in our previous publication, also as-sessing time to complete and the religious diver-sity of the populations in which the tools werevalidated. In doing so, we aim to guide thechoice of outcomemeasurement tools in futureHTA, and NHSEED). Other sources were:hand searching of relevant journals; referencelists of identified studies and relevant reviewresearch into spirituality inmulticultural, multi-faith palliative care populations.</p><p>MethodsDefinitionsSpirituality. An inclusive approach to definingspirituality was adopted, as the review aimed toinclude measures of different types using therange of concepts relating to spirituality, includ-ing, for example, indicators of spiritual well-being such as hope. An inclusive conceptionof spirituality includes religious faith as well asexistentialist/humanist positions and is consid-ered applicable to all human beings.52e55</p><p>According to this view, spirituality refers tothose beliefs, values, and practices that relateto the search for existential meaning, purpose,or transcendence, which may or may not in-clude belief in a higher power.</p><p>Cross-Cultural Applicability. Although the con-cept of culture exceeds ethnic, national, and lin-guistic boundaries, ethnicity is commonly usedas a proxy for culture in research.56 This studyalso adopts this approach, defining measuresthat are cross-culturally applicable as thosewhich have been validated either in more thanone country or in at least one ethnically diversepopulation in a single country. A study popula-tion is defined as ethnically diverse if no oneethnic group makes up &gt;60% of the sample.</p><p>DesignThe systematic review was conducted in</p><p>three stages, described below.</p><p>Stage 1: Identification of Measures Used in theLiterature.</p><p>Data Sources. Eight electronic databases weresearched (all to June 10, 2010): MEDLINE(from 1950), EMBASE (from 1980), PsycINFO(from 1806), CINAHL (from 1981), BritishNursing Index and Archive (from 1985),AMED (Allied and Complementary Medicine;from 1985), Health and Psychosocial Instru-ments (from 1985), all EBM reviews (Cochrane</p></li><li><p>Vol. 42 No. 4 October 2011 607Systematic Review and Psychometric Evaluation of Spirituality Measuresarticles; Google Internet search engine (to lo-cate additional validation articles relating toidentified tools); and the gray literature.</p><p>Search Strategy. The search strategy followeda standardized format designed for Medlineand adapted for the other databases used.Search terms were a combination of controlledvocabulary (MeSH) and free text terms. Thesearch strategy for all databases used threegroups of terms combined with AND: pallia-tive care, spirituality, and outcome mea-sure (see Ref. 49 for the key words andMedline subject heading terms used).</p><p>Inclusion/Exclusion Criteria for Studies. Origi-nal research studies that measured aspects ofspirituality in patients with advanced cancer orHIV disease and/or receiving palliative care(research study publications) or that vali-dated quantitative instruments that measure as-pects of spirituality in patients with advancedcancer or HIV disease and/or receiving pallia-tive care (validation study publications) wereincluded; studies reported in English. Qualita-tive studies and case studies were excluded.</p><p>Stage 2: Application of Inclusion/Exclusion Criteria.</p><p>Data ExtractiondResearch Study Publications.Data were extracted from identified researchstudy publications by L. S. into a commontable designed by L. S. and confirmed byR. H., M. G., and I. J. H. The name(s) and keyfeatures of the tools used were recorded in thetable along with characteristics of the studies.</p><p>Data ExtractiondValidation Study Publications.Data were extracted from identified validationstudy publications by L. S. into three commontables designed by L. S. and confirmed byR. H., M. G., and I. J. H. The following extracteddata were entered into the tables, organized bytool name: purpose, description, psychometric,and clinical properties (e.g., content and con-struct validity, internal consistency, test-retest re-liability, responsiveness, and time to complete),and demographic and clinical characteristics ofpopulation(s) of validation.</p><p>Inclusion/Exclusion Criteria for Tools. The inclu-sion/exclusion criteria included the following:1) validated in at least one of the followingpopulations: patients with advanced cancer(stated to be at an advanced stage, Stage III orIV, or no longer responding to curative treat-ment); patients with HIV or AIDS; and patientsattending palliative care services (includinghospices, end-of-life/terminal/supportive careservices), regardless of diagnosis. For excludedpopulations, see Ref. 49; 2) validated in morethan one country or in a study population inwhich no one ethnicity dominated by &gt;60%. Agrading system was developed by L. S., R. H.,and I. J. H. following a format similar to existingcriteria for the evaluation of outcome mea-sures57 and applied by L. S.49</p><p>Stage 3: Evaluation of Psychometric Properties andAppropriateness. Descriptive information wasextracted for each of the selected instruments,including the number of items in the measure,the number of spiritual items, the timeperiod as-sessed, and the scoring method. In Stage 3, out-come measures meeting Criteria 1 and 2, thatis, which had been validated in an ethnically di-verse palliative care population, were evaluatedaccording to predetermined review criteria:1) psychometric properties: content validity, internalconsistency, construct validity, floor and ceilingef...</p></li></ul>