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1.  The Malawi Developmental Assessment Tool (MDAT): The Creation, Validation, and Reliability of a Tool to Assess Child Development in Rural African Settings 
PLoS Medicine  2010;7(5):e1000273.
Melissa Gladstone and colleagues evaluate the reliability and validity of an assessment tool for evaluating child development in rural African settings.
Background
Although 80% of children with disabilities live in developing countries, there are few culturally appropriate developmental assessment tools available for these settings. Often tools from the West provide misleading findings in different cultural settings, where some items are unfamiliar and reference values are different from those of Western populations.
Methods and Findings
Following preliminary and qualitative studies, we produced a draft developmental assessment tool with 162 items in four domains of development. After face and content validity testing and piloting, we expanded the draft tool to 185 items. We then assessed 1,426 normal rural children aged 0–6 y from rural Malawi and derived age-standardized norms for all items. We examined performance of items using logistic regression and reliability using kappa statistics. We then considered all items at a consensus meeting and removed those performing badly and those that were unnecessary or difficult to administer, leaving 136 items in the final Malawi Developmental Assessment Tool (MDAT). We validated the tool by comparing age-matched normal children with those with malnutrition (120) and neurodisabilities (80). Reliability was good for items remaining with 94%–100% of items scoring kappas >0.4 for interobserver immediate, delayed, and intra-observer testing. We demonstrated significant differences in overall mean scores (and individual domain scores) for children with neurodisabilities (35 versus 99 [p<0.001]) when compared to normal children. Using a pass/fail technique similar to the Denver II, 3% of children with neurodisabilities passed in comparison to 82% of normal children, demonstrating good sensitivity (97%) and specificity (82%). Overall mean scores of children with malnutrition (weight for height <80%) were also significantly different from scores of normal controls (62.5 versus 77.4 [p<0.001]); scores in the separate domains, excluding social development, also differed between malnourished children and controls. In terms of pass/fail, 28% of malnourished children versus 94% of controls passed the test overall.
Conclusions
A culturally relevant developmental assessment tool, the MDAT, has been created for use in African settings and shows good reliability, validity, and sensitivity for identification of children with neurodisabilities.
Please see later in the article for the Editors' Summary
Editors' Summary
Background
Babies can do very little when they are first born. But, gradually, over the first few years of life, they learn to walk and run (gross motor skills), they learn to manipulate objects with their hands (fine motor skills), they learn to communicate with words and gestures (language skills), and they learn how to interact with other people (social skills). For each of these skill “domains,” experts have identified “developmental milestones,” skills that are acquired by a specific age if development is proceeding normally. So, for example, by one year, a child should be able crawl, put objects into a container, respond to simple verbal requests, and enjoy imitating people during play. Every child attains the various developmental milestones at a slightly different age but their overall development can be monitored using a series of simple tests (items) covering each of the developmental domains. Clinicians and teachers can use these “developmental assessment tools” to identify children whose development deviates significantly from the norm. It is important to identify these children as young as possible because early intervention can help them reach their full developmental potential.
Why Was This Study Done?
In developing countries, poverty, poor health, and malnutrition are responsible for millions of children failing to reach their developmental potential. But because developmental assessment tools have mainly been designed and validated in western, developed countries, they contain many items that are alien to children in non-western cultures (for example, the use of knives and forks for eating and the use of specific gestures). They cannot, therefore, accurately assess whether a child living in, for example, a rural area of Africa, is developing normally. In this study, the researchers describe the creation and testing of a culturally appropriate developmental assessment tool for use in rural Africa—the Malawi Developmental Assessment Tool (MDAT)—from a 162-item draft tool (MDAT Draft I) that they previously developed from Denver II, an assessment tool widely used in developed countries.
What Did the Researchers Do and Find?
The researchers assessed the “face validity” (do the items look acceptable to untrained judges?) and “content validity” (does the tool examine all the domains it is meant to measure?) of MDAT Draft I and modified it to produce MDAT Draft II. After piloting this version on 80 children in rural Malawi, they modified it further to produce MDAT Draft III, which was used to assess 1,426 normal children aged 0–6 years from rural Malawi and to derive age-standardized norms for each item. After statistically analyzing the performance of each item in MDAT Draft III, all the items were considered at a consensus meeting, and items that were badly performing, unnecessary, and difficult to administer were removed, leaving 136 items (MDAT). The researchers then validated MDAT by using it to assess children with neurodisabilities (disorders of the nervous system that impair normal functioning) and children with delayed development because of malnutrition. The tool was reliable (different testers got similar results for individual children and individual testers got similar results when they retested specific children), sensitive (it correctly identified most children with a neurodisability or delayed development), and specific (it correctly identified most children who were developing normally; that is, it did not give false-positive results).
What Do These Findings Mean?
These findings show that MDAT is a culturally relevant assessment tool that reliably identifies children with neurodisabilities and delayed development in rural Malawi. Importantly, they also provide a detailed illustration of how to create and validate a culturally relevant assessment tool. Although MDAT is likely to be applicable in other similar settings, further research is needed to test its generalizability and to test whether it will work in children with more subtle developmental problems. MDAT, the researchers note, should be useful as a clinical tool for the early identification of neurodisabilities and as an outcome measure in clinical trials of interventions designed to improve child development. However, they stress, because developing countries have limited resources available for screening and for helping children whose development is delayed or disrupted, for now tools like MDAT are more likely to be used for research studies than for routine developmental assessments in Malawi and other African countries.
Additional Information
Please access these Web sites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.1000273.
The World Health Organization has information on disability, prevention, and management in children and adults worldwide
UNICEF has a site on early childhood and in particular, provides information on programming experiences for early child intervention programs worldwide
Disability World is a website for international views and perspectives on disability worldwide. It provides information and links about the worldwide state of disability in children and adults in developing countries
Source, the International Information Support Centre has a good website of information about disability, inclusion, and development in children with links to many other sources of information
Wikipedia has a page on child development (note that Wikipedia is a free online encyclopedia that anyone can edit; available in several languages)
The US Centers for Disease Control and Prevention provides information on developmental screening and on developmental milestones
The American Academy of Pediatrics also provides information on developmental stages and on developmental milestones
The UK National Health Service Choices site has an interactive guide to child development
MedlinePlus has links to further resources on infant and toddler development (in English and Spanish)
doi:10.1371/journal.pmed.1000273
PMCID: PMC2876049  PMID: 20520849
2.  The Caregiver Burden Questionnaire for Heart Failure (CBQ-HF): face and content validity 
Background
A new caregiver burden questionnaire for heart failure (CBQ-HF v1.0) was developed based on previously conducted qualitative interviews with HF caregivers and with input from HF clinical experts. Version 1.0 of the CBQ-HF included 41 items measuring the burden associated with caregiving in the following domains: physical, emotional/psychological, social, and impact on caregiver’s life. Following initial development, the next stage was to evaluate caregivers’ understanding of the questionnaire items and their conceptual relevance.
Methods
To evaluate the face and content validity of the new questionnaire, cognitive interviews were conducted with caregivers of heart failure patients. The cognitive interviews included a “think aloud” exercise as the patient completed the CBQ-HF, followed by more specific probing questions to better understand caregivers’ understanding, interpretation and the relevance of the instructions, items, response scales and recall period.
Results
Eighteen caregivers of heart failure patients were recruited. The mean age of the caregivers was 50 years (SD = 10.2). Eighty-three percent of caregivers were female and most commonly the patient was either a spouse (44%) or a parent (28%). Among the patients 55% were NYHA Class 2 and 45% were NYHA Class 3 or 4. The caregiver cognitive interviews demonstrated that the CBQ-HF was well understood, relevant and consistently interpreted. From the initial 41 item questionnaire, fifteen items were deleted due to conceptual overlap and/or item redundancy. The final 26-item CBQ-HF (v3.0) uses a 5-point Likert severity scale, assessing 4 domains of physical, emotional/psychological, social and lifestyle burdens using a 4-week recall period.
Conclusions
The CBQ-HF (v3.0) is a comprehensive and relevant measure of subjective caregiver burden with strong content validity. This study has established that the CBQ-HF (v3.0) has strong face and content validity and should be valuable as an outcomes measure to help understand and monitor the relationship between patient heart failure severity and caregiver burden. A Translatability AssessmentSM of the measure has since been performed confirming the cultural appropriateness of the measure and psychometric validation is planned for the future to further explore the reliability, and validity of the new questionnaire in a larger caregiver sample.
doi:10.1186/1477-7525-11-84
PMCID: PMC3673843  PMID: 23706131
Heart failure; Caregiver burden; Instrument development; Patient-reported outcome; Content validity; Face validity; Family
3.  Development of a new tool for assessing Health-Related Quality of Life in patients with primary hyperparathyroidism 
Background
Several studies in recent years have evaluated Health Related Quality of Life (HRQoL) of patients with primary hyperparathyroidism (PHPT). No disease specific questionnaires are available to assess the impact of the disease. The aim of this research is to describe the development of a new disease specific Quality of Life (QoL) questionnaire for use specifically with PHPT patients.
Methods
A conceptual model was developed describing the impact of the disease and its symptoms on QoL domains. A literature review was conducted to identify the most relevant domains. A focus group with experts was used to validate the domains; 24 patients were also interviewed to complement the information from the patient’s perspective. A content analysis of the interviews was performed to identify items related with the impact of the disease, leading to PHPQoL-V.1 which was presented to a sample of 67 patients. Reliability was assessed by Cronbach’s coefficient alpha and item-total score correlations. Validity was assessed by a factor analysis performed to determine the number of domains. Rasch analysis was carried out in order to refine the questionnaire items.
Results
259 items were extracted from the interviews that were subsequently reduced to 34 items. Cronbach’s coefficient alpha was 0.92. The factor analysis extracted two domains (physical and emotional). After Rasch analysis the questionnaire PHPQoL-V.2 kept 16 items (9 physical and 7 emotional). The questionnaire was developed in a Spanish population and the final version was translated to English through translation and back-translation.
Conclusion
The first disease specific HRQoL questionnaire for PHPT patients (PHPQoL-16) has been developed. Validation studies designed to assess measurement properties of this tool are currently underway.
doi:10.1186/1477-7525-11-97
PMCID: PMC3710251  PMID: 23777622
4.  Accounting for the effect of GERD symptoms on patients’ health-related quality of life: supporting optimal disease management by primary care physicians 
Aim
To review, from a primary care physician (PCP) perspective, the use of patient-reported outcome (PRO) instruments for assessment of gastro-oesophageal reflux disease (GERD) symptoms, their impact on health-related quality of life (HRQL) and the effectiveness of therapy.
Results
While generic and disease-specific PRO instruments have been used in the assessment of GERD, the latter can be considered to be more appropriate as they focus only on problems relevant to the disease in question (and therefore tend to be more responsive to change). Such instruments include the Quality of Life in Reflux and Dyspepsia (QOLRAD) questionnaire and the Gastrointestinal Symptom Rating Scale and the Reflux Disease Questionnaire (RDQ). Their use indicates that GERD symptoms are troublesome and significantly reduce patients’ HRQL, and that effective treatment of GERD improves HRQL. The GERD Impact Scale (GIS) questionnaire, primarily developed for use within primary care, can also help to determine the impact of symptoms on patients’ everyday lives and, in turn, the benefit of appropriately targeted therapy. Notably, these PRO instruments were developed from focus groups of GERD patients, and only aspects rated of highest importance are used in the final instruments. Consequently, PCPs can feel confident that these questionnaires encompass the most relevant points that they are likely to ask in terms of how symptoms affect patients’ everyday lives.
Conclusions
Primary care physicians are encouraged to make wider use of PRO instruments within routine practice to improve communication with their GERD patients that, in turn, could lead to improved clinical outcomes and greater patient satisfaction.
Review CriteriaWe conducted a review of validated patient-reported outcome (PRO) instruments used in gastro-oesophageal reflux disease (GERD), based on the authors’ expertise in the field and a supplementary MEDLINE search with the terms ‘health-related quality of life’, ‘quality of life questionnaire’, ‘patient-reported outcomes’, ‘patient satisfaction’ and ‘gastro-oesophageal reflux disease’.We reviewed papers reporting health-related quality of life (HRQL) data in patients with GERD, including the effect of GERD on HRQL, treatment efficacy and HRQL, patient satisfaction and physician-patient agreement, to help primary care physicians to incorporate PRO instruments into their day-to-day management of patients with GERD.Message for the ClinicAn evidence-based review shows that PRO instruments can accurately assess the nature of GERD symptoms, their impact on HRQL and the efficacy of treatment.Primary care physicians are encouraged to make wider use of PRO instruments as part of their management of patients with GERD, given that such questionnaires can facilitate patient communication and help physicians understand and satisfy the therapeutic needs of their patients.Among validated PRO instruments, the GERD Impact Scale represents a practical tool that is easy for primary care physicians to incorporate into their everyday practice.
doi:10.1111/j.1742-1241.2007.01586.x
PMCID: PMC2228387  PMID: 17927764
5.  Assessment of the Equivalence of the Spanish and English Versions of the CAHPS® Hospital Survey on the Quality of Inpatient Care 
Health Services Research  2005;40(6 Pt 2):2140-2161.
Objective
To describe translation and cultural adaptation procedures, and examine the degree of equivalence between the Spanish and English versions of the Agency for Healthcare Research and Quality's (AHRQ) Consumer Assessments of Healthcare Providers and Systems (CAHPS®) Hospital Survey (H-CAHPS®) of patient experiences with care.
Data Sources
Cognitive interviews on survey comprehension with 12 Spanish-speaking and 31 English-speaking subjects. Psychometric analyses of 586 responses to the Spanish version and 19,134 responses to the English version of the H-CAHPS survey tested in Arizona, Maryland, and New York in 2003.
Study Design
A forward/backward translation procedure followed by committee review and cognitive testing was used to ensure a translation that was both culturally and linguistically appropriate. Responses to the two language versions were compared to evaluate equivalence and assess the reliability and validity of both versions.
Data Collection/Extraction Methods
Comparative analyses were carried out on the 32 items of the shortened survey version, focusing on 16 items that comprise seven composites representing different aspects of hospital care quality (communication with nurses, communication with doctors, communication about medicines, nursing services, discharge information, pain control, and physical environment); three items that rate the quality of the nursing staff, physician staff, and the hospital overall; one item on intention to recommend the hospital. The other 12 items used in the analyses addressed mainly respondent characteristics. Analyses included item descriptives, correlations, internal consistency reliability of composites, factor analysis, and regression analysis to examine construct validity.
Principal Findings
Responses to both language versions exhibit similar patterns with respect to item–scale correlations, factor structure, content validity, and the association between each of the seven qualities of care composites with both the hospital rating and intention to recommend the hospital. Internal consistency reliability was slightly, yet significantly lower for the Spanish-language respondents for five of the seven composites, but overall the composites were generally equivalent across language versions.
Conclusions
The results provide preliminary evidence of the equivalence between the Spanish and English versions of H-CAHPS. The translated Spanish version can be used to assess hospital quality of care for Spanish speakers, and compare results across these two language groups.
doi:10.1111/j.1475-6773.2005.00469.x
PMCID: PMC1361240  PMID: 16316442
Survey translation and adaptation; patient survey; language equivalence; hospital care quality; Spanish-language survey
6.  Acromegaly Quality of Life Questionnaire (AcroQoL) 
Acromegaly is a chronic disease with an important impact on patients, Health Related Quality of Life (HRQoL). The ability to effectively measure Health Related Quality of Life is central to describing the impacts of disease or treatment upon the patient, therefore the importance of having a disease specific questionnaire for acromegaly. For the development of the AcroQoL questionnaire different sources of information were used: first a literature search was performed to identify relevant papers describing the impact of acromegaly in HRQoL, second the main domains of impact on HRQoL were identified by 10 experts endocrinologists, and third ten in-depth semi-structured interviews were conducted in acromegalic patients to identify domains and items related to the self-perceived impact of acromegaly in patients' life. After a proper qualitative analysis a preliminary 38 item questionnaire was obtained. Rasch analysis concluded with a final 22 item questionnaire. The measurement properties (validity and reliability) of the resulting final questionnaire were tested and compared using standard procedures (Cronbach's Alpha and item-total correlation). The evaluation of the item parameters confirmed the construct validity of the new instrument. Responsiveness to change was assessed in a small sample of 32 acromegalic patients with active disease in Spain who were administered the AcroQoL and the generic questionnaire EuroQoL 5-D. The results showed a statistically significant relationship between all the dimensions of AcroQoL and the VAS (visual analogic scale) of EQ-5D. An improvement in the global score of AcroQoL was related to a global improvement in the VAS of the EQ-5D.
Following the current recommended standard methodology the Spanish questionnaire was translated into eleven other languages.
doi:10.1186/1477-7525-2-13
PMCID: PMC404471  PMID: 14987332
7.  Psychometric Properties of Self-Report Concussion Scales and Checklists 
Journal of Athletic Training  2012;47(2):221-223.
Reference/Citation:
Alla S, Sullivan SJ, Hale L, McCrory P. Self-report scales/checklists for the measurement of concussion symptoms: a systematic review. Br J Sports Med. 2009;43 (suppl 1):i3–i12.
Clinical Question:
Which self-report symptom scales or checklists are psychometrically sound for clinical use to assess sport-related concussion?
Data Sources:
Articles available in full text, published from the establishment of each database through December 2008, were identified from PubMed, Medline, CINAHL, Scopus, Web of Science, SPORTDiscus, PsycINFO, and AMED. Search terms included brain concussion, signs or symptoms, and athletic injuries, in combination with the AND Boolean operator, and were limited to studies published in English. The authors also hand searched the reference lists of retrieved articles. Additional searches of books, conference proceedings, theses, and Web sites of commercial scales were done to provide additional information about the psychometric properties and development for those scales when needed in articles meeting the inclusion criteria.
Study Selection:
Articles were included if they identified all the items on the scale and the article was either an original research report describing the use of scales in the evaluation of concussion symptoms or a review article that discussed the use or development of concussion symptom scales. Only articles published in English and available in full text were included.
Data Extraction:
From each study, the following information was extracted by the primary author using a standardized protocol: study design, publication year, participant characteristics, reliability of the scale, and details of the scale or checklist, including name, number of items, time of measurement, format, mode of report, data analysis, scoring, and psychometric properties. A quality assessment of included studies was done using 16 items from the Downs and Black checklist1 and assessed reporting, internal validity, and external validity.
Main Results:
The initial database search identified 421 articles. After 131 duplicate articles were removed, 290 articles remained and were added to 17 articles found during the hand search, for a total of 307 articles; of those, 295 were available in full text. Sixty articles met the inclusion criteria and were used in the systematic review. The quality of the included studies ranged from 9 to 15 points out of a maximum quality score of 17. The included articles were published between 1995 and 2008 and included a collective total of 5864 concussed athletes and 5032 nonconcussed controls, most of whom participated in American football. The majority of the studies were descriptive studies monitoring the resolution of concussive self-report symptoms compared with either a preseason baseline or healthy control group, with a smaller number of studies (n = 8) investigating the development of a scale.
The authors initially identified 20 scales that were used among the 60 included articles. Further review revealed that 14 scales were variations of the Pittsburgh Steelers postconcussion scale (the Post-Concussion Scale, Post-Concussion Scale: Revised, Post-Concussion Scale: ImPACT, Post-Concussion Symptom Scale: Vienna, Graded Symptom Checklist [GSC], Head Injury Scale, McGill ACE Post-Concussion Symptoms Scale, and CogState Sport Symptom Checklist), narrowing down to 6 core scales, which the authors discussed further. The 6 core scales were the Pittsburgh Steelers Post-Concussion Scale (17 items), Post-Concussion Symptom Assessment Questionnaire (10 items), Concussion Resolution Index postconcussion questionnaire (15 items), Signs and Symptoms Checklist (34 items), Sport Concussion Assessment Tool (SCAT) postconcussion symptom scale (25 items), and Concussion Symptom Inventory (12 items). Each of the 6 core scales includes symptoms associated with sport-related concussion; however, the number of items on each scale varied. A 7-point Likert scale was used on most scales, with a smaller number using a dichotomous (yes/no) classification.
Only 7 of the 20 scales had published psychometric properties, and only 1 scale, the Concussion Symptom Inventory, was empirically driven (Rasch analysis), with development of the scale occurring before its clinical use. Internal consistency (Cronbach α) was reported for the Post-Concussion Scale (.87), Post-Concussion Scale: ImPACT 22-item (.88–.94), Head Injury Scale 9-item (.78), and Head Injury Scale 16-item (.84). Test-retest reliability has been reported only for the Post-Concussion Scale (Spearman r = .55) and the Post-Concussion Scale: ImPACT 21-item (Pearson r = .65). With respect to validity, the SCAT postconcussion scale has demonstrated face and content validity, the Post-Concussion Scale: ImPACT 22-item and Head Injury Scale 9-item have reported construct validity, and the Head Injury Scale 9-item and 16-item have published factorial validity.
Sensitivity and specificity have been reported only with the GSC (0.89 and 1.0, respectively) and the Post-Concussion Scale: ImPACT 21-item when combined with the neurocognitive component of ImPACT (0.819 and 0.849, respectively). Meaningful change scores were reported for the Post-Concussion Scale (14.8 points), Post-Concussion Scale: ImPACT 22-item (6.8 points), and Post-Concussion Scale: ImPACT 21-item (standard error of the difference = 7.17; 80% confidence interval = 9.18).
Conclusions:
Numerous scales exist for measuring the number and severity of concussion-related symptoms, with most evolving from the neuropsychology literature pertaining to head-injured populations. However, very few of these were created in a systematic manner that follows scale development processes and have published psychometric properties. Clinicians need to understand these limitations when choosing and using a symptom scale for inclusion in a concussion assessment battery. Future authors should assess the underlying constructs and measurement properties of currently available scales and use the ever-increasing prospective data pools of concussed athlete information to develop scales following appropriate, systematic processes.
PMCID: PMC3418135  PMID: 22488289
mild traumatic brain injuries; evaluation; reliability; validity; sensitivity; specificity
8.  Validation of a Spanish language version of the pain self-perception scale in patients with fibromyalgia 
Background
The Pain Self-Perception Scale (PSPS) is a 24-item questionnaire used to assess mental defeat in chronic pain patients. The aim of this study was to develop a Spanish language version of the PSPS (PSPS-Spanish), to assess the instrument's psychometric properties in a sample of patients with fibromyalgia and to confirm a possible overlapping between mental defeat and pain catastrophizing.
Methods
The PSPS was translated into Spanish by three bilingual content and linguistic experts, and then back-translated into English to assess for equivalence. The final Spanish version was administered, along with the Hospital Anxiety Depression Scale (HADS), Pain Visual Analogue Scale (PVAS), Pain Catastrophizing Scale (PCS) and Fibromyalgia Impact Questionnaire (FIQ), to 250 Spanish patients with fibromyalgia.
Results
PSPS-Spanish was found to have high internal consistency (Cronbach's α = 0.90 and the item-total r correlation coefficients ranged between 0.68 and 0.86). Principal components analysis revealed a one-factor structure which explained 61.4% of the variance. The test-retest correlation assessed with the intraclass correlation coefficient, over a 1-2 weeks interval, was 0.78. The total PSPS score was significantly correlated with all the questionnaires assessed (HADS, PVAS, PCS, and FIQ).
Conclusions
The Spanish version of the PSPS appears to be a valid tool in assessing mental defeat in patients with fibromyalgia. In patients with fibromyalgia and Post-Traumatic Stress Disorder (PTSD), PSPS-Spanish correlates more intensely with FIQ than in patients without PTSD. Mental defeat seems to be a psychological construct different to pain catastrophizing.
doi:10.1186/1471-2474-11-255
PMCID: PMC2991283  PMID: 21050485
9.  Neuro-QOL: quality of life item banks for adults with neurological disorders: item development and calibrations based upon clinical and general population testing 
Purpose
Neuro-QOL provides a clinically relevant and psychometrically robust health-related quality of life (HRQL) assessment tool for both adults and children with common neurological disorders. We now report the psychometric results for the adult tools.
Methods
An extensive research, survey and consensus process was used to produce a list of 5 priority adult neurological conditions (stroke, multiple sclerosis, Parkinson’s disease, epilepsy and ALS). We identified relevant health related quality of life (HRQL) domains through multiple methods and data sources including a comprehensive review of the literature and literature search, expert interviews and surveys and patient and caregiver focus groups. The final domain framework consisted of 17 domains of Physical, Mental and Social health. There were five phases of item development: (1) identification of 3,482 extant items, (2) item classification and selection, (3) item review and revision, (4) cognitive interviews with 63 patients to assess their understanding of individual items and (5) field testing of 432 representative items.
Participants and Procedures
Participants were drawn from the US general population and clinical settings, and included both English and Spanish speaking subjects (N = 3,246). Confirmatory factor analysis (CFA) was used to evaluate the dimensionality of unidimensional domains. Where the domain structure was previously unknown, the dataset was split and first analyzed with exploratory factor analysis and then CFA. Samejima’s graded response model (GRM) was used to calculate IRT parameters. We further evaluated differential item functioning (DIF) on gender, education and age.
Results
Thirteen unidimensional calibrated item banks consisting of 297 items were developed. All of the tested item banks had high reliability and few or no locally dependent items. The range of item slopes and thresholds with good information are reported for each of the item banks. The banks can support CAT and the development of short forms.
Conclusion
The Neuro-QOL measurement system provides item banks and short forms that enable PRO measurement in neurological research, minimizes patient burden and can be used to create multiple instrument types minimizing standard error. The 17 adult measures include 13 calibrated item banks, 3 item pools available for calibration work by others, and 1 stand-alone scale (index). The Neuro-QOL instruments provide a “common metric” of representative concepts for use across patient groups in different studies.
doi:10.1007/s11136-011-9958-8
PMCID: PMC3889669  PMID: 21874314
Outcome measures; Quality of life; Neurological disorders; Computerized adaptive testing, item banking
10.  Psychometric properties of a culture-adapted Spanish version of AIDA (Assessment of Identity Development in Adolescence) in Mexico 
Background
The construct “identity” was discussed to be integrated as an important criterion for diagnosing personality disorders in DSM-5. According to Kernberg, identity diffusion is one of the relevant underlying structures in terms of personality organization for developing psychopathology, especially borderline personality disorder. Therefore, it would be important to differentiate healthy from pathological development already in adolescence. With the questionnaire termed AIDA (Assessment of Identity Development in Adolescence), a reliable and valid self-rating inventory was introduced by Goth, Foelsch, Schlueter-Mueller, & Schmeck (2012) to assess pathology-related identity development in healthy and disturbed adolescents. To test the usefulness of the questionnaire in Mexico, we contributed to the development of a culture-specific Spanish translation of AIDA and tested the reliability and aspects of validity of the questionnaire in a juvenile Mexican sample.
Methods
An adapted Spanish translation of AIDA was developed by an expert panel from Chile, Mexico, and Spain in cooperation with the original authors, focusing on content equivalence and comprehensibility by considering specific idioms, life circumstances, and culture-specific aspects. The psychometric properties of the Spanish version were first tested in Mexico. Participants were 265 students from a state school (N = 110) and private school (N = 155), aged between 12 and 19 years (mean 14.15 years). Of these, 44.9% were boys and 55.1% were girls. Item characteristics were analyzed by several parameters, scale reliability by Cronbach’s Alpha, and systematic effects of gender, age, and socioeconomics by an analysis of variance (ANOVA). We evaluated aspects of criterion validity in a juvenile justice system sample (N = 41) of adolescent boys in conflict with the law who displayed various types of behavioral problems by comparing the AIDA scores of a subgroup with signs for borderline pathology (N = 14) with the scores obtained in the student sample using T-tests.
Results
The psychometric properties of the Spanish version of AIDA proved satisfactory in the Mexican sample for items as well as scales. The reliability coefficients were α = .94 for the total scale “Identity Diffusion”, α = .85 and .92 for the two primary scales “Discontinuity” and “Incoherence”, and between α = .70 and .83 for the subscales. However, some items of the item pool in the Spanish version of AIDA did not meet all criteria for test equivalence and should thus be reformulated, taking the Mexican culture into account. Significant effects for gender and age were found. In line with our theory, the AIDA scores in the domains “Discontinuity” (high effect size) and “Incoherence” (medium effect size) were markedly higher in the delinquent boys than in the student group.
Conclusion
The Spanish version of AIDA can be used in Mexico with satisfying psychometric properties, with only minor adaptions required. Our study contributes to the intercultural applicability of the AIDA instrument using the construct “identity integration vs. diffusion” as it was defined in the AIDA model for diagnostic purposes. Cultural differences, even those present in the various Spanish-speaking countries, should be modeled carefully.
doi:10.1186/1753-2000-7-25
PMCID: PMC3765088  PMID: 23899385
Identity; Questionnaire; Psychometrics; Adolescence; Cultural test adaption; Cross-cultural
11.  Assessing the quality of life of health-referred children and adolescents with short stature: development and psychometric testing of the QoLISSY instrument 
Background
When evaluating the outcomes of treatment in paediatric endocrinology, the health-related quality of life (HrQoL) of the child is to be taken into consideration. Since few self–reported HrQoL instruments exist for children with diagnosed short stature (dSS), the objective of this study was to develop and psychometrically test a targeted HrQoL instrument for use in multinational clinical research.
Methods
The target population were short stature (height < −2 SDS) children and adolescents (age 8–12 and 13–18 years) with a diagnosis of growth hormone deficiency (GHD) or idiopathic short stature (ISS), differing in growth hormone treatment status. Focus group discussions for concept and item generation, piloting of the questionnaire with cognitive debriefing, and instrument field testing with a retest were conducted simultaneously in five countries. After qualitative and preliminary quantitative analyses, psychometric testing of field test data in terms of reliability and validity including confirmatory factor analyses (CFA) was performed.
Results
Following item generation from focus group discussions, 124 items were included in a pilot test with a cognitive debriefing exercise providing preliminary feedback on item and domain operating characteristics. A field test with 268 participants showed high internal consistency reliabilities (alpha 0.82 – 0.95), good correlations with generic measures (up to r = .58), significant known group differences (e.g. in height: F = 32, df 244, p < 0.001) and an acceptable CFA model fit suggesting construct validity of the three-domain core structure with 22 items, supplemented by three mediator domains with 28 items.
Conclusions
The QoLISSY questionnaire is a promising step forward in assessing the impact of dSS on HrQoL. It is based on items generated from the subjective experience of short stature children referred for endocrine investigation, is validated for use in five languages and it is easy to administer in clinical and research settings.
doi:10.1186/1477-7525-11-76
PMCID: PMC3666886  PMID: 23648112
Health-related quality of life; Short stature; Growth hormone deficiency; Assessment in children; Idiopathic short stature; Outcomes research; Patient reported outcomes
12.  Development of six PROMIS pediatrics proxy-report item banks 
Background
Pediatric self-report should be considered the standard for measuring patient reported outcomes (PRO) among children. However, circumstances exist when the child is too young, cognitively impaired, or too ill to complete a PRO instrument and a proxy-report is needed. This paper describes the development process including the proxy cognitive interviews and large-field-test survey methods and sample characteristics employed to produce item parameters for the Patient Reported Outcomes Measurement Information System (PROMIS) pediatric proxy-report item banks.
Methods
The PROMIS pediatric self-report items were converted into proxy-report items before undergoing cognitive interviews. These items covered six domains (physical function, emotional distress, social peer relationships, fatigue, pain interference, and asthma impact). Caregivers (n = 25) of children ages of 5 and 17 years provided qualitative feedback on proxy-report items to assess any major issues with these items. From May 2008 to March 2009, the large-scale survey enrolled children ages 8-17 years to complete the self-report version and caregivers to complete the proxy-report version of the survey (n = 1548 dyads). Caregivers of children ages 5 to 7 years completed the proxy report survey (n = 432). In addition, caregivers completed other proxy instruments, PedsQL™ 4.0 Generic Core Scales Parent Proxy-Report version, PedsQL™ Asthma Module Parent Proxy-Report version, and KIDSCREEN Parent-Proxy-52.
Results
Item content was well understood by proxies and did not require item revisions but some proxies clearly noted that determining an answer on behalf of their child was difficult for some items. Dyads and caregivers of children ages 5-17 years old were enrolled in the large-scale testing. The majority were female (85%), married (70%), Caucasian (64%) and had at least a high school education (94%). Approximately 50% had children with a chronic health condition, primarily asthma, which was diagnosed or treated within 6 months prior to the
interview. The PROMIS proxy sample scored similar or better on the other proxy instruments compared to normative samples.
Conclusions
The initial calibration data was provided by a diverse set of caregivers of children with a variety of common chronic illnesses and racial/ethnic backgrounds. The PROMIS pediatric proxy-report item banks include physical function (mobility n = 23; upper extremity n = 29), emotional distress (anxiety n = 15; depressive symptoms n = 14; anger n = 5), social peer relationships (n = 15), fatigue (n = 34), pain interference (n = 13), and asthma impact (n = 17).
doi:10.1186/1477-7525-10-22
PMCID: PMC3312870  PMID: 22357192
PROMIS; HRQOL; PRO; Scale development; Parent Proxy; Pediatrics
13.  Better assessment of physical function: item improvement is neglected but essential 
Arthritis Research & Therapy  2009;11(6):R191.
Introduction
Physical function is a key component of patient-reported outcome (PRO) assessment in rheumatology. Modern psychometric methods, such as Item Response Theory (IRT) and Computerized Adaptive Testing, can materially improve measurement precision at the item level. We present the qualitative and quantitative item-evaluation process for developing the Patient Reported Outcomes Measurement Information System (PROMIS) Physical Function item bank.
Methods
The process was stepwise: we searched extensively to identify extant Physical Function items and then classified and selectively reduced the item pool. We evaluated retained items for content, clarity, relevance and comprehension, reading level, and translation ease by experts and patient surveys, focus groups, and cognitive interviews. We then assessed items by using classic test theory and IRT, used confirmatory factor analyses to estimate item parameters, and graded response modeling for parameter estimation. We retained the 20 Legacy (original) Health Assessment Questionnaire Disability Index (HAQ-DI) and the 10 SF-36's PF-10 items for comparison. Subjects were from rheumatoid arthritis, osteoarthritis, and healthy aging cohorts (n = 1,100) and a national Internet sample of 21,133 subjects.
Results
We identified 1,860 items. After qualitative and quantitative evaluation, 124 newly developed PROMIS items composed the PROMIS item bank, which included revised Legacy items with good fit that met IRT model assumptions. Results showed that the clearest and best-understood items were simple, in the present tense, and straightforward. Basic tasks (like dressing) were more relevant and important versus complex ones (like dancing). Revised HAQ-DI and PF-10 items with five response options had higher item-information content than did comparable original Legacy items with fewer response options. IRT analyses showed that the Physical Function domain satisfied general criteria for unidimensionality with one-, two-, three-, and four-factor models having comparable model fits. Correlations between factors in the test data sets were > 0.90.
Conclusions
Item improvement must underlie attempts to improve outcome assessment. The clear, personally important and relevant, ability-framed items in the PROMIS Physical Function item bank perform well in PRO assessment. They will benefit from further study and application in a wider variety of rheumatic diseases in diverse clinical groups, including those at the extremes of physical functioning, and in different administration modes.
doi:10.1186/ar2890
PMCID: PMC3003539  PMID: 20015354
14.  Multinational development of a questionnaire assessing patient satisfaction with anticoagulant treatment: the 'Perception of Anticoagulant Treatment Questionnaire' (PACT-Q©) 
Background
The side effects and burden of anticoagulant treatments may contribute to poor compliance and consequently to treatment failure. A specific questionnaire is necessary to assess patients' needs and their perceptions of anticoagulant treatment.
Methods
A conceptual model of expectation and satisfaction with anticoagulant treatment was designed by an advisory board and used to guide patient (n = 31) and clinician (n = 17) interviews in French, US English and Dutch. Patients had either atrial fibrillation (AF), deep venous thrombosis (DVT), or pulmonary embolism (PE). Following interviews, three PACT-Q language versions were developed simultaneously and further pilot-tested by 19 patients. Linguistic validations were performed for additional language versions.
Results
Initial concepts were developed to cover three areas of interest: 'Treatment', 'Disease and Complications' and 'Information about disease and anticoagulant treatment'. After clinician and patient interviews, concepts were further refined into four domains and 17 concepts; test versions of the PACT-Q were then created simultaneously in three languages, each containing 27 items grouped into four domains: "Treatment Expectations" (7 items), "Convenience" (11 items), "Burden of Disease and Treatment" (2 items) and "Anticoagulant Treatment Satisfaction" (7 items). No item was deleted or added after pilot testing as patients found the PACT-Q easy to understand and appropriate in length in all languages. The PACT-Q was divided into two parts: the first part to measure the expectations and the second to measure the convenience, burden and treatment satisfaction, for evaluation prior to and after anticoagulant treatment, respectively. Eleven additional language versions were linguistically validated.
Conclusion
The PACT-Q has been rigorously developed and linguistically validated. It is available in 14 languages for use with thromboembolic patients, including AF, PE and DVT patients. Its validation and psychometric properties have been tested and are presented in a separate manuscript.
doi:10.1186/1477-7525-7-9
PMCID: PMC2654430  PMID: 19196486
15.  Study protocol of psychometric properties of the Spanish translation of a competence test in evidence based practice: The Fresno test 
Background
There are few high-quality instruments for evaluating the effectiveness of Evidence-Based Practice (EBP) curricula with objective outcomes measures. The Fresno test is an instrument that evaluates most of EBP steps with a high reliability and validity in the English original version. The present study has the aims to translate the Fresno questionnaire into Spanish and its subsequent validation to ensure the equivalence of the Spanish version against the English original.
Methods and design
The questionnaire will be translated with the back translation technique and tested in Primary Care Teaching Units in Catalonia (PCTU). Participants will be: (a) tutors of Family Medicine residents (expert group); (b) Family Medicine residents in their second year of the Family Medicine training program (novice group), and (c) Family Medicine physicians (intermediate group). The questionnaire will be administered before and after an educational intervention. The educational intervention will be an interactive four half-day sessions designed to develop the knowledge and skills required to EBP. Responsiveness statistics used in the analysis will be the effect size, the standardised response mean and Guyatt's method. For internal consistency reliability, two measures will be used: corrected item-total correlations and Cronbach's alpha. Inter-rater reliability will be tested using Kappa coefficient for qualitative items and intra-class correlation coefficient for quantitative items and the overall score. Construct validity, item difficulty, item discrimination and feasibility will be determined.
Discussion
The validation of the Fresno questionnaire into different languages will enable the expansion of the questionnaire, as well as allowing comparison between countries and the evaluation of different teaching models.
doi:10.1186/1472-6963-9-37
PMCID: PMC2660898  PMID: 19239704
16.  Development of the conceptual framework for the Eye-Drop Satisfaction Questionnaire (EDSQ©) in glaucoma using a qualitative study 
Background
Compliance is a major issue in glaucoma care. It is usually poor in glaucomatous patients, and may ultimately result in an acceleration of the disease progression and a risk of blindness. Reasons for this poor compliance are complex and multifactorial, amongst which patient satisfaction can be counted. The objective of this study was to develop a questionnaire to assess patient satisfaction and compliance with eye-drop treatment.
Methods
A qualitative study was carried out to develop the questionnaire. An interview guide was developed based on a literature review. Structured interviews of fifteen French and English patients with primary open-angle glaucoma or intraocular hypertension were conducted by trained interviewers of the native language of the interviewees. General concepts and subconcepts were identified from the transcripts. The questionnaire was developed using the patient verbatim, and submitted to six patients (French and English) for cognitive debriefing. Following patients' comments, items were modified and restructured, and a pilot questionnaire was designed.
Results
Analysis of data from the interviews with patients and clinicians resulted in the elicitation of concepts related to patient satisfaction and compliance with glaucomatous treatment. These were further refined and used to generate a test questionnaire, which consisted of 46 items grouped into 6 domains: patient characteristics, treatment characteristics, patient-clinician relationship, patient experience with the disease and the treatment, interaction between the patient and the treatment, and patient knowledge of the disease and the treatment.
Conclusion
The Eye-Drop Satisfaction Questionnaire (EDSQ) conceptual framework and items were developed simultaneously in French and in English. This questionnaire could be used to evaluate patient satisfaction and compliance with eye-drop treatment and would facilitate the identification of patients at risk of being non-compliant prior to clinical trials or innovative device tests. A psychometric study is under way to validate the questionnaire.
doi:10.1186/1472-6963-7-124
PMCID: PMC1973077  PMID: 17683594
17.  Translation and validation of non-English versions of the Ankylosing Spondylitis Quality of Life (ASQOL) questionnaire 
Background
The Ankylosing Spondylitis Quality of Life (ASQOL) questionnaire is a unidimensional, disease-specific measure developed in the UK and the Netherlands. This study describes its adaptation into other languages.
Methods
The UK English ASQOL was translated into US English; Canadian French and English; French; German; Italian; Spanish; and Swedish (dual-panel methods). Cognitive debriefing interviews were conducted with AS patients. Psychometric/scaling properties were assessed using data from two Phase III studies of adalimumab. Baseline and Week-2 data were used to assess test-retest reliability. Validity was determined by correlation of ASQOL with SF-36 and BASFI and by discriminative ability of ASQOL based on disease severity. Item response theory (Rasch model) was used to test ASQOL's scaling properties.
Results
Cognitive debriefing showed the new ASQOL versions to be clear, relevant and comprehensive. Sample sizes varied, but were sufficient for: psychometric/scaling assessment for US English and Canadian English; psychometric but not scaling analyses for German; and preliminary evidence of these properties for the remaining languages. Test-retest reliability and Cronbach's alpha coefficients were high: US English (0.85, 0.85), Canadian English (0.87, 0.86), and German (0.77, 0.79). Correlations of ASQOL with SF-36 and BASFI for US English, Canadian English, and German measures were moderate, but ASQOL discriminated between patients based on perceived disease severities (p < 0.01). Results were comparable for the other languages. US English and Canadian English exhibited fit to the Rasch model (non-significant p-values: 0.54, 0.68), confirming unidimensionality.
Conclusion
The ASQOL was successfully translated into all eight languages. Psychometric properties were excellent for US English, Canadian English, and German, and extremely promising for the other languages.
doi:10.1186/1477-7525-5-7
PMCID: PMC1808053  PMID: 17274818
18.  Does the Consumer Assessment of Healthcare Providers and Systems Cultural Competence Survey provide equivalent measurement across English and Spanish versions? 
Medical care  2012;50(9 Suppl 2):S37-S41.
BACKGROUND
The English and Spanish versions of the Consumer Assessments of Healthcare Providers and Systems (CAHPS®) Cultural Competence Survey (CAHP-CC) assess patients’ experiences with culturally competent care. The possibility exists that even when Spanish and an English speakers experience the same levels of culturally competent care, responses describing their care may differ. This is called measurement bias. To deliver reliable and valid information across language, responses must provide equivalent measurement across versions. In this study, we examined whether measurement bias on the CAHPS-CC impedes valid measurement across the English and Spanish versions.
METHODS
We used multiple group (MG) confirmatory factor analyses (CFA) to examine measurement bias across English (n = 851) and Spanish (n = 113) speakers. Participants came from a 2008 sample of two Medicaid managed care plans, in New York and California.
RESULTS
MG-CFA provided general support for the equivalence of the CAHPS-CC in measuring Doctor Communication-Positive Behaviors, Doctor Communication-Negative Behaviors, Doctor Communication-Preventative Care, Equitable Treatment, and Trust. We did observe statistically significant differences in the thresholds associated with the item asking whether a doctor gave easier to understand instructions. However, analyses indicated that bias did not meaningfully influence conclusions about average experiences using the English and Spanish versions of the CAHPS-CC.
CONCLUSIONS
Our results support the use of the English and Spanish versions of the CAHPS-CC. Though we found some bias, analyses demonstrated that it did not substantively impact conclusions for the studied domains. Health providers can place confidence in the two different CAHPS-CC translations.
doi:10.1097/MLR.0b013e3182665189
PMCID: PMC3443872  PMID: 22895229
Cultural competence; CAHPS®; Spanish; translation; ethnicity; measurement equivalence
19.  Linguistic validation of translation of the self-assessment goal achievement (saga) questionnaire from English 
Background
A linguistic validation of the Self-Assessment Goal Achievement (SAGA) questionnaire was conducted for 12 European languages, documenting that each translation adequately captures the concepts of the original English-language version of the questionnaire and is readily understood by subjects in the target population.
Methods
Native-speaking residents of the target countries who reported urinary problems/lower urinary tract problems were asked to review a translation of the SAGA questionnaire, which was harmonized among 12 languages: Danish, Dutch, English (UK), Finnish, French, German, Greek, Icelandic, Italian, Norwegian, Spanish, and Swedish. During a cognitive debriefing interview, participants were asked to identify any words that were difficult to understand and explain in their own words the meaning of each sentence in the questionnaire. The qualitative analysis was conducted by local linguistic validation teams (original translators, back translator, project manager, interviewer, and survey research expert).
Results
Translations of the SAGA questionnaire from English to 12 European languages were well understood by the participants with an overall comprehension rate across language of 98.9%. In addition, the translations retained the original meaning of the SAGA items and instructions. Comprehension difficulties were identified, and after review by the translation team, minor changes were made to 7 of the 12 translations to improve clarity and comprehension.
Conclusions
Conceptual, semantic, and cultural equivalence of each translation of the SAGA questionnaire was achieved thus confirming linguistic validation.
doi:10.1186/1477-7525-10-40
PMCID: PMC3349573  PMID: 22525050
SAGA; Validation; Lower urinary tract symptoms; Overactive bladder; Goal achievement; Patient-reported questionnaire
20.  Development and validation of the impact of dry eye on everyday life (IDEEL) questionnaire, a patient-reported outcomes (PRO) measure for the assessment of the burden of dry eye on patients 
Objective
To develop and validate a comprehensive patient-reported outcomes instrument focusing on the impact of dry eye on everyday life (IDEEL).
Methods
Development and validation of the IDEEL occurred in four phases: 1) focus groups with 45 dry eye patients to develop a draft instrument, 2) item generation, 3) pilot study to assess content validity in 16 patients and 4) psychometric validation in 210 subjects: 130 with non-Sjögren's keratoconjunctivitis sicca, 32 with Sjögren's syndrome and 48 controls, and subsequent item reduction.
Results
Focus groups identified symptoms and the associated bother, the impact of dry eye on daily life and the patients' satisfaction with their treatment as the central concepts in patients' experience of dry eye. Qualitative analysis indicated that saturation was achieved for these concepts and yielded an initial 112-item draft instrument. Patients understood the questionnaire and found the items to be relevant indicating content validity. Patient input, item descriptive statistics and factor analysis identified 55 items that could be deleted. The final 57-item IDEEL assesses dry eye impact constituting 3 modules: dry eye symptom-bother, dry eye impact on daily life comprising impact on daily activities, emotional impact, impact on work, and dry eye treatment satisfaction comprising satisfaction with treatment effectiveness and treatment-related bother/inconvenience. The psychometric analysis results indicated that the IDEEL met the criteria for item discriminant validity, internal consistency reliability, test-retest reliability and floor/ceiling effects. As expected, the correlations between IDEEL and the Dry Eye Questionnaire (a habitual symptom questionnaire) were higher than between IDEEL and Short-Form-36 and EuroQoL-5D, indicating concurrent validity.
Conclusion
The IDEEL is a reliable, valid and comprehensive questionnaire relevant to issues that are specific to dry eye patients, and meets current FDA patient-reported outcomes guidelines. The use of this questionnaire will provide assessment of the impact of dry eye on patient dry eye-related quality of life, impact of treatment on patient outcomes in clinical trials, and may aid in treatment effectiveness evaluation.
doi:10.1186/1477-7525-9-111
PMCID: PMC3269387  PMID: 22152125
Dry eye; Sjögren's Syndrome; non-Sjögren's keratoconjunctivitis sicca; health-related quality of life; treatment satisfaction; symptoms; impact; patient-reported outcome; questionnaire
21.  Indicators of Family Care for Development for Use in Multicountry Surveys 
Indicators of family care for development are essential for ascertaining whether families are providing their children with an environment that leads to positive developmental outcomes. This project aimed to develop indicators from a set of items, measuring family care practices and resources important for caregiving, for use in epidemiologic surveys in developing countries. A mixed method (quantitative and qualitative) design was used for item selection and evaluation. Qualitative and quantitative analyses were conducted to examine the validity of candidate items in several country samples. Qualitative methods included the use of global expert panels to identify and evaluate the performance of each candidate item as well as in-country focus groups to test the content validity of the items. The quantitative methods included analyses of item-response distributions, using bivariate techniques. The selected items measured two family care practices (support for learning/stimulating environment and limit-setting techniques) and caregiving resources (adequacy of the alternate caregiver when the mother worked). Six play-activity items, indicative of support for learning/stimulating environment, were included in the core module of UNICEF's Multiple Cluster Indictor Survey 3. The other items were included in optional modules. This project provided, for the first time, a globally-relevant set of items for assessing family care practices and resources in epidemiological surveys. These items have multiple uses, including national monitoring and cross-country comparisons of the status of family care for development used globally. The obtained information will reinforce attention to efforts to improve the support for development of children.
PMCID: PMC3763619  PMID: 23304914
Child; Development; Disciplinary measures; Family care index; Family care indicators; Parenting
22.  Measuring Coverage in MNCH: A Prospective Validation Study in Pakistan and Bangladesh on Measuring Correct Treatment of Childhood Pneumonia 
PLoS Medicine  2013;10(5):e1001422.
Background
Antibiotic treatment for pneumonia as measured by Demographic and Health Surveys (DHS) and Multiple Indicator Cluster Surveys (MICS) is a key indicator for tracking progress in achieving Millennium Development Goal 4. Concerns about the validity of this indicator led us to perform an evaluation in urban and rural settings in Pakistan and Bangladesh.
Methods and Findings
Caregivers of 950 children under 5 y with pneumonia and 980 with “no pneumonia” were identified in urban and rural settings and allocated for DHS/MICS questions 2 or 4 wk later. Study physicians assigned a diagnosis of pneumonia as reference standard; the predictive ability of DHS/MICS questions and additional measurement tools to identify pneumonia versus non-pneumonia cases was evaluated.
Results at both sites showed suboptimal discriminative power, with no difference between 2- or 4-wk recall. Individual patterns of sensitivity and specificity varied substantially across study sites (sensitivity 66.9% and 45.5%, and specificity 68.8% and 69.5%, for DHS in Pakistan and Bangladesh, respectively). Prescribed antibiotics for pneumonia were correctly recalled by about two-thirds of caregivers using DHS questions, increasing to 72% and 82% in Pakistan and Bangladesh, respectively, using a drug chart and detailed enquiry.
Conclusions
Monitoring antibiotic treatment of pneumonia is essential for national and global programs. Current (DHS/MICS questions) and proposed new (video and pneumonia score) methods of identifying pneumonia based on maternal recall discriminate poorly between pneumonia and children with cough. Furthermore, these methods have a low yield to identify children who have true pneumonia. Reported antibiotic treatment rates among these children are therefore not a valid proxy indicator of pneumonia treatment rates. These results have important implications for program monitoring and suggest that data in its current format from DHS/MICS surveys should not be used for the purpose of monitoring antibiotic treatment rates in children with pneumonia at the present time.
Please see later in the article for the Editors' Summary
Editors' Summary
Background
Pneumonia is a major cause of death in children younger than five years across the globe, with approximately 1.2 million children younger than five years dying from pneumonia every year. Pneumonia can be caused by bacteria, fungi, or viruses. It is possible to effectively treat bacterial pneumonia with appropriate antibiotics; however, only about 30% of children receive the antibiotic treatment they need. The Millennium Development Goals (MDGs) are eight international development goals that were established in 2000. The fourth goal (MDG 4) aims to reduce child mortality, specifically, to reduce the under-five mortality rate by two-thirds, between 1990 and 2015. Given that approximately 18% of all deaths in children under five are caused by pneumonia, providing universal coverage with effective treatments for pneumonia is an important part of MDG 4.
To ensure that MDG 4 targets are met, it is important to measure progress in providing effective treatments. For pneumonia, one of the key indicators for measuring progress is the proportion of children with pneumonia in a population who receive antibiotic treatment, also known as the antibiotic treatment rate. The antibiotic treatment rate is often measured using surveys, such as the Demographic and Health Surveys (DHS) and Multiple Indicator Cluster Surveys (MICS), which collect nationally representative data about populations and health in developing countries.
Why Was This Study Done?
Concerns have been raised about whether information collected from DHS and MICS is able to accurately identify cases of pneumonia. In a clinical setting, pneumonia is typically diagnosed based on a combination of physical symptoms, including coughing, rapid breathing, or difficulty breathing, and a chest X-ray. The surveys rely on information collected from interviews of mothers and primary caregivers using structured questions about whether the child has experienced physical symptoms in the past two weeks and whether these were chest-related. The DHS survey labels this condition as “symptoms of acute respiratory infection,” while the MICS survey uses the term “suspected pneumonia.” Thus, these surveys provide a proxy measure for pneumonia that is limited by the reliance on the recall of symptoms by the mother or caregiver. Here the researchers have evaluated the use of these surveys to discriminate physician-diagnosed pneumonia and to provide accurate recall of antibiotic treatment in urban and rural settings in Pakistan and Bangladesh.
What Did the Researchers Do and Find?
The researchers identified caregivers of 950 children under five years with pneumonia and 980 who had a cough or cold but did not have pneumonia from urban and rural settings in Pakistan and Bangladesh. Cases of pneumonia were identified based on a physician diagnosis using World Health Organization guidelines. They randomly assigned caregivers to be interviewed using DHS and MICS questions with either a two- or four-week recall period. They then assessed how well the DHS and MICS questions were able to accurately diagnose pneumonia and accurately recall antibiotic use. In addition, they asked caregivers to complete a pneumonia score questionnaire and showed them a video tool showing children with and without pneumonia, as well as a medication drug chart, to determine if these alternative measures improved the accuracy of pneumonia diagnosis or recall of antibiotic use. They found that both surveys, the pneumonia score, and the video tool had poor ability to discriminate between children with and without physician-diagnosed pneumonia, and there were no differences between using two- or four-week recall. The sensitivity (proportion of pneumonia cases that were correctly identified) ranged from 23% to 72%, and the specificity (the proportion of “no pneumonia” cases that were correctly identified) ranged from 53% to 83%, depending on the setting. They also observed that prescribed antibiotics for pneumonia were correctly recalled by about two-thirds of caregivers using DHS questions, and this increased to about three-quarters of caregivers when using a drug chart and detailed enquiry.
What Do These Findings Mean?
The findings of this study suggest that the current use of questions from DHS and MICS based on mother or caregiver recall are not sufficient for accurately identifying pneumonia and antibiotic use in children. Because these surveys have poor ability to identify children who have true pneumonia, reported antibiotic treatment rates for children with pneumonia based on data from these surveys may not be accurate, and these surveys should not be used to monitor treatment rates. These findings should be interpreted cautiously, given the relatively high rate of loss to follow-up and delayed follow-up in some of the children and because some of the settings in this study may not be similar to other low-income settings.
Additional Information
Please access these websites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.1001422.
More information is available on the United Nations goal to reduce child mortality (MDG 4)
The World Health Organization provides information on pneumonia, its impact on children, and the global action plan for prevention and control of pneumonia
More information is available on Demographic and Health Surveys and Multiple Indicator Cluster Surveys
KidsHealth, a resource maintained by the Nemours Foundation (a not-for-profit organization for children's health) provides information for parents on pneumonia (in English and Spanish)
MedlinePlus provides links to additional information on pneumonia (in English and Spanish)
doi:10.1371/journal.pmed.1001422
PMCID: PMC3646205  PMID: 23667339
23.  The Patient-reported Clinicians’ Cultural Sensitivity Survey (CCSS): A Field Test among Older Latino Primary Care Patients 
Background
Patient-reported measures of clinicians’ cultural sensitivity are important to assess comprehensively quality of care among ethnically diverse patients and may help address persistent health inequities.
Objective
Create a patient-reported, multidimensional survey of clinicians’ cultural sensitivity to cultural factors affecting quality of care.
Design
Using a comprehensive conceptual framework, items were written and field-tested in a cross-sectional telephone survey. Multitrait scaling and factor analyses were used to develop measures.
Setting and Participants
Latino patients ≥ age 50 from primary care practices in California.
Main Variables Studied
35 items hypothesized to assess clinicians’ sensitivity
Main Outcomes Measures
Validity and reliability of cultural sensitivity measures.
Results
Twenty-nine of 35 items measuring 14 constructs were retained. Eleven measures assessed sensitivity issues relevant to all participants: complementary and alternative medicine; mind-body connections; causal attributions; preventive care; family involvement; modesty; prescription medications; spirituality; physician discrimination due to education; physician discrimination due to race/ethnicity; and staff discrimination due to race/ethnicity. Three measures were group specific: two to limited English proficient patients (sensitivity to language needs and discrimination due to language) and one to immigrant (sensitivity to immigrant status). Twelve multi-item scales demonstrated adequate reliability (alpha ≥ .68 except for Spanish discrimination due to education) and evidence of construct validity (item-scale correlations for all scales > .40 except for sensitivity to immigrant status). Two single item measures demonstrated sufficient construct validity to retain for further development.
Discussion and Conclusions
The Clinicians’ Cultural Sensitivity Survey can be used to assess the quality of care of older Latino patients.
doi:10.1111/j.1369-7625.2010.00654.x
PMCID: PMC3570254  PMID: 21223467
cultural sensitivity; cultural competence; Latinos; Hispanics; quality of care
24.  Depression in Aboriginal men in central Australia: adaptation of the Patient Health Questionnaire 9 
BMC Psychiatry  2013;13:271.
Background
While Indigenous Australians are believed to be at a high risk of psychological illness, few screening instruments have been designed to accurately measure this burden. Rather than simply transposing western labels of symptoms, this paper describes the process by which a screening tool for depression was specifically adapted for use across multiple Indigenous Australian communities.
Method
Potential depression screening instruments were identified and interrogated according to a set of pre-defined criteria. A structured process was then developed which relied on the expertise of five focus groups comprising of members from primary Indigenous language groups in central Australia. First, focus group participants were asked to review and select a screening measure for adaptation. Bi-lingual experts then translated and back translated the language within the selected measure. Focus group participants re-visited the difficult items, explored their meaning and identified potential ways to achieve equivalence of meaning.
Results
All five focus groups independently selected the Primary Health Questionnaire 9, several key conceptual differences were exposed, largely related to the construction of hopelessness. Together with translated versions of each instrument for each of the five languages, a single, simplified English version for use across heterogeneous settings was negotiated. Importantly, the ‘code’ and specific conceptually equivalent words that could be used for other Indigenous language groups were also developed.
Conclusions
The extensive process of adaptation used in this study has demonstrated that within the context of Indigenous Australian communities, across multiple language groups, where English is often a third or fourth language, conceptual and linguistic equivalence of psychological constructs can be negotiated. A validation study is now required to assess the adapted instrument’s potential for measuring the burden of disease across all Indigenous Australian populations.
doi:10.1186/1471-244X-13-271
PMCID: PMC3816593  PMID: 24139186
Indigenous Australians; Depression; Primary health questionnaire 9; Assessment; Mental health
25.  Cognates Facilitate Word Recognition in Young Spanish-English Bilinguals’ Test Performance 
Purpose
This study was conducted to determine whether bilingual children of kindergarten and first grade age were able to recognize cognates of Spanish words, and whether the ability to recognize cognates changed the score on a measure of English vocabulary.
Methods
89 bilingual children were administered all of the items on the Test of Language Development-Primary:3 (TOLD-P:3) Picture Vocabulary Subtest (Newcomer & Hammill, 1997). Parents and teachers provided information about the child’s English and Spanish exposure. Data analysis using repeated measures ANOVA compared performance in bilingual children divided by level of relative exposure to Spanish and English on cognate verses noncognate items.
Results
Sensitivity to cognate status was related to the amount of language exposure. Children exposed to more Spanish knew more of the English cognates of Spanish words than children who were exposed to balanced amounts of Spanish and English and those exposed to more English. Standard scores differences on the TOLD-P:3 across all levels of Spanish-English exposure were found using ceiling rules and total raw scores.
Conclusions
Findings suggest a transfer of vocabulary knowledge from the students’ first language (Spanish) to receptive vocabulary in English. Children as early as kindergarten are sensitive to the Spanish/English cognates. Results have implications for understanding bilingual children’s’ performance on assessment, and for developing intervention strategies to enhance vocabulary in English language learners.
PMCID: PMC3615885  PMID: 23565068
cognates; English language learners; cognate awareness; vocabulary; assessment

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