Reliability and Feasibility of the Self-Administered ISTH-Bleeding Assessment Tool

Abstract Introduction Standardized bleeding assessment tools (BATs), such as the International Society for Thrombosis and Hemostasis (ISTH)-BAT, are screening instruments used during the diagnostic workup of suspected bleeding disorders. A self-administered ISTH-BAT (self-BAT) would enhance screening and save time during an outpatient clinic visit. Aim This study was aimed to investigate the reliability and feasibility of the self-BAT. Methods The electronic self-BAT was created from the ISTH-BAT and paper-version of self-BAT and optimized by patients and physicians. Patients with a (suspected) congenital platelet defect (CPD), who had previously undergone physician-administered ISTH-BAT assessment, were invited to complete the self-BAT. Optimal self-BAT cut-off values to detect a bleeding tendency, as defined by the ISTH-BAT, were evaluated by receiver operator characteristic (ROC) curve analysis to reach a sensitivity ≥95%. Reliability was tested by assessing sensitivity, specificity, and intraclass correlation (ICC). Feasibility was evaluated on comprehension and length of self-BAT. Results Both versions of the BAT were completed by 156 patients. Optimal cut-off values for self-BAT to define a bleeding tendency were found to be identical to those of the ISTH-BAT. Normal/abnormal scores of the ISTH-BAT and self-BAT were agreed in 88.5% (138/156, 95% confidence interval [CI]: 0.83–0.93) of patients. The sensitivity and specificity of the self-BAT to detect a bleeding tendency were 96.9 and 48.1%, respectively. The ICC was 0.73. Self-BAT questions were graded by 96.8% (151/156) as “very easy,” “easy,” and “satisfactory” and questionnaire length as “exactly right” by 91% (142/156) of patients. Conclusion In patients with a (suspected) CPD, the self-BAT is sufficiently reliable and feasible to detect a bleeding tendency, which supports its use as a screening tool.

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Validation of HIV Risk Screening Tool to Identify Infected Adults and Adolescents >14 years at Community Level

10.21203/rs.3.rs-209246/v1 ◽

2021 ◽

Author(s):

Kesetebirhan Delele Yirdaw ◽

Justin Mandala

Keyword(s):

Risk Factors ◽

Risk Assessment ◽

Hiv Risk ◽

Assessment Tool ◽

Assessment Tools ◽

Hiv Test ◽

Risk Assessment Tools ◽

Hiv Risk Assessment ◽

Sensitivity Specificity ◽

Conventional Risk Factors

Abstract Background There are a number of risk factors being used to identify undiagnosed HIV infected adults. As the number of undiagnosed people gets lesser and lesser, it is important to know if existing risk factors and risk assessment tools are valid for use. In this study, we validate existing HIV risk assessment tools and see if they are worth using for HIV case finding among adults who remain undiagnosed. Methods The Tanzania and Zambia Population-Based HIV Impact Assessment (PHIA) household surveys were conducted during 2016. We used adult interview and HIV datasets to assess validity of different HIV risk assessment tools. We first included 12 risk factors (being divorced, separated or widowed (DSW); having an HIV+ spouse; having one of the following within 12 months of the survey: paid work, slept away from home for at least a month, had multiple sexual partners, paid for sex, had sexually transmitted infection (STI), being a tuberculosis (TB) suspect, being very sick for at least 3 months; had ever sold sex; diagnosed with cervical cancer; and had TB disease into a risk assessment tool and assessed its validity by comparing it against HIV test result. Sensitivity, specificity and predictive value of the tool were assessed against the HIV test result. A receiver operator characteristic (ROC) analysis was conducted to determine a suitable cut-off score in order to have a tool with better sensitivity, specificity, and PPV. ROC comparison statistics was used to statistically test equality between AUC (area under the curve) of the different scores. ROC comparison statistics was also used to determine which risk assessment tool was better compared to the tool that contained all risk factors. Results Of 14,820 study participants, 57.8% were men, and had a median age of 30 (IQR: 21-24). HIV prevalence was 2.3% (95% confidence interval (CI): 2.0-2.6). For the tool containing all risk factors, HIV prevalence was 1.0% when none of the risk factors were positive (Score 0) compared to 3.2% when at least one factor (Score ≥1) was present and 8.0% when ≥4 risk factors were present. Sensitivity, specificity, PPV, and NPV were 82.3% (78.6%-85.9%), 41.9% (41.1%-42.7%), 3.2% (2.8%-3.6%), and 99.0% (98.8%-99.3%), respectively. The use of a tool containing conventional risk factors (all except those related with working and sleeping away) was found to have higher AUC compared to the use of all risk factors (p value <0.001), with corresponding sensitivity, specificity, PPV, and NPV of 63.5% (58.9%-68.1%), 66.2% (65.5%-67.0%), 4.2% (3.6%-4.8%), and 98.7% (98.5%-98.9%), respectively. Conclusion Use of a screening tool containing conventional risk factors improved HIV testing yield compared to doing universal testing. Prioritizing people who fulfil multiple risk factors should be explored further to improve HIV testing yield.

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Validation of HIV Risk Screening Tool To Identify Infected Adults And Adolescents >14 Years At Community Level

10.21203/rs.3.rs-668957/v1 ◽

2021 ◽

Author(s):

Kesetebirhan Delele Yirdaw ◽

Justin Mandala

Keyword(s):

Risk Factors ◽

Risk Assessment ◽

Hiv Risk ◽

Assessment Tool ◽

Assessment Tools ◽

Hiv Test ◽

Risk Assessment Tools ◽

Hiv Risk Assessment ◽

Sensitivity Specificity ◽

Conventional Risk Factors

Abstract BackgroundThere are a number of risk factors being used to identify undiagnosed HIV infected adults. As the number of undiagnosed people gets lesser and lesser, it is important to know if existing risk factors and risk assessment tools are valid for use. In this study, we validate existing HIV risk assessment tools and see if they are worth using for HIV case finding among adults who remain undiagnosed. Methods The Tanzania and Zambia Population-Based HIV Impact Assessment (PHIA) household surveys were conducted during 2016. We used adult interview and HIV datasets to assess validity of different HIV risk assessment tools. We first included 12 risk factors (being divorced, separated or widowed (DSW); having an HIV+ spouse; having one of the following within 12 months of the survey: paid work, slept away from home for at least a month, had multiple sexual partners, paid for sex, had sexually transmitted infection (STI), being a tuberculosis (TB) suspect, being very sick for at least 3 months; had ever sold sex; diagnosed with cervical cancer; and had TB disease into a risk assessment tool and assessed its validity by comparing it against HIV test result. Sensitivity, specificity and predictive value of the tool were assessed against the HIV test result. A receiver operator characteristic (ROC) analysis was conducted to determine a suitable cut-off score in order to have a tool with better sensitivity, specificity, and PPV. ROC comparison statistics was used to statistically test equality between AUC (area under the curve) of the different scores. ROC comparison statistics was also used to determine which risk assessment tool was better compared to the tool that contained all risk factors. Results Of 14,820 study participants, 57.8% were men, and had a median age of 30 (IQR: 21-24). HIV prevalence was 2.3% (95% confidence interval (CI): 2.0-2.6). For the tool containing all risk factors, HIV prevalence was 1.0% when none of the risk factors were positive (Score 0) compared to 3.2% when at least one factor (Score ≥1) was present and 8.0% when ≥4 risk factors were present. Sensitivity, specificity, PPV, and NPV were 82.3% (78.6%-85.9%), 41.9% (41.1%-42.7%), 3.2% (2.8%-3.6%), and 99.0% (98.8%-99.3%), respectively. The use of a tool containing conventional risk factors (all except those related with working and sleeping away) was found to have higher AUC compared to the use of all risk factors (p value <0.001), with corresponding sensitivity, specificity, PPV, and NPV of 63.5% (58.9%-68.1%), 66.2% (65.5%-67.0%), 4.2% (3.6%-4.8%), and 98.7% (98.5%-98.9%), respectively. Conclusion Use of a screening tool containing conventional risk factors improved HIV testing yield compared to doing universal testing. Prioritizing people who fulfil multiple risk factors should be explored further to improve HIV testing yield.

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A Comparison of Two Pain Assessment Tools, the Adolescent Pediatric Pain Tool and PAINReportIt and Use of the Composite Pain Index in Sickle Cell Disease

Blood ◽

10.1182/blood.v116.21.2648.2648 ◽

2010 ◽

Vol 116 (21) ◽

pp. 2648-2648

Author(s):

A. Kyle Mack ◽

Stephanie Pelligra ◽

Richard J. Labotka ◽

Robert Molokie ◽

Young O Kim ◽

...

Keyword(s):

Pain Intensity ◽

Sickle Cell ◽

Pain Assessment ◽

Assessment Tool ◽

Clinic Visit ◽

Assessment Tools ◽

Pain Intensity Score ◽

Pediatric Pain ◽

The Mean ◽

Multidimensional Representation

Abstract Abstract 2648 Introduction: Pain is a common acute and chronic complication of sickle cell disease (SCD) in pediatric patients. However there are very few pain assessment tools that can assess patients for the multidimensional components of pain. The Adolescent Pediatric Pain Tool (APPT) is a validated, self-administered paper and pencil pain assessment tool validated in children and adolescents. The McGill Pain questionnaire (MPQ) is a pain assessment tool validated in adolescents and adults. PAINReportIt (PR) is a self-administered, computerized version of the MPQ. The APPT and PR can each be administered in a single outpatient clinic visit. The Composite Pain Index (CPI), a multidimensional representation of pain, can be calculated with both the APPT and PR. It is calculated by summing the individual standardized-scores for each of the four pain dimensions: (1) number of sites, (2) intensity, (3) total pain rating index, and (4) the pain pattern score. The use of these tools can present pain as the all-important 5th vital sign and may assist providers in the treatment of the multiple components of pain in pediatric SCD. The aim of this study was to compare the use of two pain assessment tools, the APPT and PR in pediatric SCD patients with respect to the composite pain index and the multiple dimensions of pain. Patients/Methods: Patients with the following genotypes were eligible for this study: Hb SS, Hb SC, Hb Sb0-thalassemia, and Hb Sb+-thalassemia. Patients who were 14 years and older were eligible to complete both tools on a single, outpatient visit to a comprehensive SCD clinic. The number of pain sites, intensity and the CPI were analyzed with descriptive, correlation, and independent t-test statistics. Results: 57 patients completed both pain tools. The mean age was 17.5 +/− 2.6 years (mean +/− SD). There were 29 females (51%) and 28 males (49%). 84% of the patients had Hb SS; 14% had Hb SC and 2% had Hb Sb0-thalassemia. Pain was described in every body segment, with the most frequent sites including the: back, legs, chest, and abdomen. Pain intensity was moderate for the average subject (mean pain intensity score out of 10 was 3.7 +/− 2.6 for PR and 4.3 +/− 3.2 with the APPT, r=.46, p<.01). The mean CPI was 201.1 +/− 26.9 with PR and 200 +/− 30.5 with the APPT (mean +/− SD). There was a strong correlation with the CPI between PR and the APPT (r=.73, p<.01). Mean PR CPI scores were not significantly different for females (206.5 +/− 29.7) and males (195.6 +/− 22.9). Mean APPT CPI scores were significantly different (p=.01) for females (206.3 +/− 35) than males (193.5 +/− 24.1). There were no differences in mean APPT CPI scores by genotype or age groups. Conclusion: Pain in SCD patients is a common complication with significant morbidity. In this study we found on a single, outpatient comprehensive sickle cell clinic visit that patients had pain in every body segment and had pain in multiple body sites. Patients in this study had moderate pain during a routine outpatient clinic visit. The Composite Pain Index is a multidimensional representation of pain that can be determined with both the APPT and PR. This study demonstrates that both the APPT and PR produced similar CPI scores in pediatric and adult SCD patients. The gender differences in CPI scores produced by the APPT in comparison to PR is likely due to the APPT having only one pain intensity score (pain now) to contribute to the CPI whereas PR has 3 pain intensity scores (pain now, least and worst pain in previous 24 hours). The significance of this study is that the CPI may be an important outcome variable to allow researchers and clinicians to compare the complexities of the chronic pain that pediatric and adult patients with SCD experience. Disclosures: Labotka: HemaQuest Pharmaceuticals, Inc: Research Funding.

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Abstract WP264: Be Fast - Redefined

Stroke ◽

10.1161/str.48.suppl_1.wp264 ◽

2017 ◽

Vol 48 (suppl_1) ◽

Author(s):

Swati Laroia ◽

Charles Romero ◽

Cynthia Deveikis ◽

Tudor Jovin ◽

Ashutosh Jadhav ◽

...

Keyword(s):

Assessment Tool ◽

Retrospective Chart Review ◽

Assessment Tools ◽

Large Vessel ◽

Large Vessel Occlusion ◽

Chi Square ◽

Vessel Occlusion ◽

Cluster Technique ◽

Presenting Symptoms ◽

Sensitivity Specificity

Introduction: Simple prehospital assessment tools for identifying patients with large vessel occlusion remains a challenge. This study evaluated the mnemonic BE FAST with modified designations for the detection of large vessel occlusion by evaluation of select symptoms ( B alance/Coordination, E ye Deviation, F acial Weakness, A rm/Leg Weakness, S lurred Speech/ S ensory Deficits, T ime of Onset). Methods: Retrospective chart review for all patients (July 2014 to June 2015) with discharge diagnosis of ischemic stroke was performed excluding hemorrhagic stroke and TIAs. Presenting symptoms, physical findings and NIH score were used to determine a BE FAST score. Imaging was evaluated for presence of large vessel occlusion (LVO) and stroke. Comorbidities and interventions were recorded. A presumptive BE FAST cut-off value for identifying LVO was made and confirmed using Two-step Cluster Technique and data dichotomized based on the cut-off. Chi-Square Tests were then used to determine if an association existed between dichotomized BE FAST scores and rates of LVO. Diagnostic sensitivity, specificity, and accuracy were then calculated using this cut-off value. Findings: 526 patient charts were identified and 455 patient charts remained after application of exclusion criteria. Of 108 patients with LVO, 18 patients had a BE FAST score <4 (16.7%) and 90 patients had a score ≥4 (83.3%). Of the 347 patients without LVO, 260 (74.9%) had a score <4 and 87 (25.1%) had a score of ≥ 4. Differences in the rates of LVO based on this cut-off were significant (p<0.001). Only atrial fibrillation and BE FAST score ≥4 were predictive of LVO, odds ratios of 1.89 (95% CI: 1.035 - 3.456; p=0.038) and 19.5 (95% CI: 10.474 - 36.293; p<0.001), respectively. The sensitivity for the BE FAST score in the detection of LVO was calculated as 83%. The diagnostic accuracy of the BE FAST score with a threshold of 4 was calculated as 77%. Conclusion: The modified BE FAST score, as defined here, may serve as a useful prehospital assessment tool for identifying patients with large vessel occlusion. The simplicity of the tool may reduce time to appropriate intervention. Prospective research is needed to confirm these findings and to determine inter- and intra-rater reliability of this modified BE FAST score.

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Assessment tools for the measurement of the self-efficacy of drug users: protocol for a systematic review

BMJ Open ◽

10.1136/bmjopen-2017-019019 ◽

2018 ◽

Vol 8 (3) ◽

pp. e019019

Author(s):

Selene Cordeiro Vasconcelos ◽

Iracema da Silva Frazão ◽

Everton Botelho Sougey ◽

Sandra Lopes de Souza ◽

Tatiana de Paula Santana da Silva ◽

...

Keyword(s):

Systematic Review ◽

Psychometric Properties ◽

Self Efficacy ◽

Drug Users ◽

Assessment Tool ◽

Meta Analysis ◽

The Self ◽

Assessment Tools ◽

Evaluation Approach ◽

Cosmin Checklist

IntroductionThe abuse of alcohol and other drugs is a worldwide problem, the treatment of which poses a challenge to healthcare workers.ObjectiveThis study presents a proposal for a systematic review to analyse the psychometric properties of assessment tools developed to measure the self-efficacy of drug users with regard to resisting the urge to take drugs in high-risk situations.Methods and AnalysisThe guiding question was based on PICOS (Population Intervention Comparator Outcome Setting), and the report of the methods of review protocol was written in accordance with the Preferred Reporting Items for Systematic Review and Meta-Analysis Protocols (PRISMA-P). Searches will be performed in the PsycINFO, Cochrane, Pubmed, Web of Science, SCOPUS and CINAHL databases, followed by the use of the ‘snowball’ strategy. The inclusion criteria for the articles will be (1) assessment tool validation studies; (2) assessment tools developed to measure self-efficacy; (3) quantitative measures; (4) measures designed for use on adults; (5) data from self-reports of the participants; (6) studies involving a description of psychometric properties of the measures; and (7) studies that explain how the level of self-efficacy is scored. The search, selection and analysis will be performed by two independent reviewers. In cases of a divergence of opinion, a third reviewer will be consulted. The COSMIN checklist will be used for the appraisal of the methodological quality of the assessment tools and the certainty of the evidence in the articles (risk of bias) will be analysed using the GRADE (Grading of Recommendations Assessment, Development and Evaluation) approach.Ethics and disseminationThis protocol does not require ethical approval. However, this protocol is part of the thesis entitledDrug-Taking Confidence Questionnairefor use in Brazil, presented for obtaining a doctorate in neuropsychiatry and behavioural sciences from the Federal University of Pernambuco, and has received approval from the human research ethics committee of the Federal University of Pernambuco (reference number: 1.179.162).The results will be disseminated to clinicians and researchers through peer-reviewed publications and conferences.PROSPERO registration numberCRD42017068555.

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Japanese Translation and Validation of the Environmental Assessment Tool–Higher Care

HERD Health Environments Research & Design Journal ◽

10.1177/19375867211007856 ◽

2021 ◽

pp. 193758672110078

Author(s):

Sumiyo Brennan ◽

Therese Doan ◽

Kirsty Bennett ◽

Yumiko Hashimoto ◽

Richard Fleming

Keyword(s):

Environmental Assessment ◽

Content Validity ◽

Concurrent Validity ◽

Assessment Tool ◽

Intraclass Correlation ◽

Group Living ◽

Japanese Version ◽

Assessment Tools ◽

Small Scale ◽

Forward Translation

Objective: The purpose of this study was to translate the Environmental Assessment Tool–Higher Care (EAT-HC) into Japanese and validate its use in small-scale group living facilities in Japan. Background: Environment of a facility is shown to improve its residents’ quality of life (QOL). Japan’s “welfare-based nursing homes for the elderly” are gradually shifting to a small-scale group living concept called group care units (GCUs). However, there is no appropriate environmental tool available for evaluating GCUs. The application of valid environmental assessment tools brings about a better understanding of the nature of good environments and the relationship between environments and outcomes for residents living with dementia. Methods: The study had a mixed method design conducted in several steps, covering translation and adaptation. The translation phase involved (1) forward translation and (2) backward translation. The adaptation phase involved (3) content validity and homogeneity reliability and (4) concurrent validity and interrater reliability. Results: 71 Items (92%) met the acceptable level of content validity (item-content validity index [CVI] > .79) and had good scale-CVI of .88. Concurrent validity was confirmed between .65 and .78 ( p < .001). For reliability test, the internal consistency of six subscales was between .88 and .98. Overall interobserver agreement was 90.3%. Intraclass correlation coefficients were .80–.98 ( p < .001), and homogeneity reliability coefficient for all items was >.76 ( p < .01). Conclusions: Validation of the EAT-HC-Japanese Version (EAT-HC-JV) was confirmed as an appropriate tool for environmental assessment to enhance the QOL in Japan’s GCUs. For future study, we plan to modify the EAT-HC-JV to adapt to Japanese cultural aspects in order to increase its usability in Japan.

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CODEM Instrument

GeroPsych ◽

10.1024/1662-9647/a000100 ◽

2014 ◽

Vol 27 (1) ◽

pp. 23-31 ◽

Cited By ~ 4

Author(s):

Anne Kuemmel (This author contributed eq ◽

Julia Haberstroh (This author contributed ◽

Johannes Pantel

Keyword(s):

Convergent Validity ◽

Interrater Reliability ◽

Discriminant Validity ◽

Assessment Tool ◽

Intraclass Correlation ◽

Well Being ◽

Communication Behavior ◽

People With Dementia ◽

Pearson's R ◽

Pearson’S R

Communication and communication behaviors in situational contexts are essential conditions for well-being and quality of life in people with dementia. Measuring methods, however, are limited. The CODEM instrument, a standardized observational communication behavior assessment tool, was developed and evaluated on the basis of the current state of research in dementia care and social-communicative behavior. Initially, interrater reliability was examined by means of videoratings (N = 10 people with dementia). Thereupon, six caregivers in six German nursing homes observed 69 residents suffering from dementia and used CODEM to rate their communication behavior. The interrater reliability of CODEM was excellent (mean κ = .79; intraclass correlation = .91). Statistical analysis indicated that CODEM had excellent internal consistency (Cronbach’s α = .95). CODEM also showed excellent convergent validity (Pearson’s R = .88) as well as discriminant validity (Pearson’s R = .63). Confirmatory factor analysis verified the two-factor solution of verbal/content aspects and nonverbal/relationship aspects. With regard to the severity of the disease, the content and relational aspects of communication exhibited different trends. CODEM proved to be a reliable, valid, and sensitive assessment tool for examining communication behavior in the field of dementia. CODEM also provides researchers a feasible examination tool for measuring effects of psychosocial intervention studies that strive to improve communication behavior and well-being in dementia.

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Concussion in para sport: the first position statement of the Concussion in Para Sport (CIPS) Group

British Journal of Sports Medicine ◽

10.1136/bjsports-2020-103696 ◽

2021 ◽

pp. bjsports-2020-103696

Author(s):

Richard Weiler ◽

Cheri Blauwet ◽

David Clarke ◽

Kristine Dalton ◽

Wayne Derman ◽

...

Keyword(s):

Consensus Statement ◽

Assessment Tool ◽

Return To Sport ◽

Position Statement ◽

Assessment Tools ◽

Future Research ◽

Concussion Management ◽

Rule Changes ◽

Specific Rule ◽

And Performance

Concussion is a frequent injury in many sports and is also common in para athletes. However, there is a paucity of concussion research related to para sport, and prior International Concussion in Sport (CIS) consensus papers have not substantively addressed this population. To remedy this and to improve concussion care provided to para athletes, the concussion in para sport (CIPS) multidisciplinary expert group was created. This group analysed and discussed in-depth para athlete-specific issues within the established key clinical domains of the current (2017) consensus statement on CIS. Due to the onset of the COVID-19 pandemic, the group held all meetings by video conferencing. The existing Sport Concussion Assessment Tool 5 (SCAT5) for the immediate on-field and office-based off-field assessment of concussion was evaluated as part of this process, to identify any para athlete-specific concerns. Regular preparticipation and periodic health examinations are essential to determine a baseline reference point for concussion symptoms but pose additional challenges for the interpreting clinician. Further considerations for concussion management for the para athlete are required within the remove, rest, reconsider and refer consensus statement framework. Considering return to sport (RTS), the 2017 CIS consensus statement has limitations when considering the RTS of the para athlete. Case-by-case decision making related to RTS following concussion is imperative for para athletes. Additional challenges exist for the evaluation and management of concussion in para athletes. There is a need for greater understanding of existing knowledge gaps and attitudes towards concussion among athlete medical staff, coaches and para athletes. Future research should investigate the use and performance of common assessment tools in the para athlete population to better guide their clinical application and inform potential modifications. Concussion prevention strategies and sport-specific rule changes, such as in Para Alpine Skiing and Cerebral Palsy Football, also should be carefully considered to reduce the occurrence of concussion in para athletes.

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The Role of Digital Maturity Assessment in Technology Interventions with Industrial Internet Playground

Electronics ◽

10.3390/electronics10101134 ◽

2021 ◽

Vol 10 (10) ◽

pp. 1134

Author(s):

Annabeth Aagaard ◽

Mirko Presser ◽

Tom Collins ◽

Michail Beliatis ◽

Anita Krogsøe Skou ◽

...

Keyword(s):

Assessment Tool ◽

Digital Transformation ◽

Assessment Tools ◽

Manufacturing Companies ◽

Digital Interventions ◽

Maturity Assessment ◽

Industrial Internet ◽

Digital Development ◽

Key Dimensions ◽

The Impact

The use of digital technologies such as Internet of Things and advanced data analytics are central in digitally transforming manufacturing companies towards Industry 4.0. Success cases are frequently reported, and there is clear evidence of technology interventions conducted by industry. However, measuring the impact and effect of such interventions on digital maturity and on the organizational adoption can be challenging. Therefore, the research aim of this paper is to explore how the combination of the different methods of Industrial Internet Playground (IIP) pilots, Shadow Infrastructure (SI) and digital maturity assessment can assist in conducting and documenting the technical, as well as organisational, impact of digital interventions. Through an elaborate literature review of existing digital maturity assessment tools and key dimensions in digital transformation, we have developed a digital maturity assessment tool (DMAT), which is presented and applied in the paper to identify digital development areas and to evaluate and document the effects of digital interventions. Thus, the paper contributes with new knowledge of how the IIP pilot and SI combined with digital maturity assessment can support effective, transparent and documented digital transformation throughout an organisation, as explored through theory and a practice case.

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Augmenting the Clinical Data Sources for Enigmatic Diseases: A Cross-Sectional Study of Self-Tracking Data and Clinical Documentation in Endometriosis

Applied Clinical Informatics ◽

10.1055/s-0040-1718755 ◽

2020 ◽

Vol 11 (05) ◽

pp. 769-784

Author(s):

Ipek Ensari ◽

Adrienne Pichon ◽

Sharon Lipsky-Gorman ◽

Suzanne Bakken ◽

Noémie Elhadad

Keyword(s):

Additional Data ◽

Intraclass Correlation ◽

Management Strategies ◽

The Self ◽

Self Management ◽

Cross Sectional ◽

Two Samples ◽

Data Source ◽

Daily Function ◽

Over Time

Abstract Background Self-tracking through mobile health technology can augment the electronic health record (EHR) as an additional data source by providing direct patient input. This can be particularly useful in the context of enigmatic diseases and further promote patient engagement. Objectives This study aimed to investigate the additional information that can be gained through direct patient input on poorly understood diseases, beyond what is already documented in the EHR. Methods This was an observational study including two samples with a clinically confirmed endometriosis diagnosis. We analyzed data from 6,925 women with endometriosis using a research app for tracking endometriosis to assess prevalence of self-reported pain problems, between- and within-person variability in pain over time, endometriosis-affected tasks of daily function, and self-management strategies. We analyzed data from 4,389 patients identified through a large metropolitan hospital EHR to compare pain problems with the self-tracking app and to identify unique data elements that can be contributed via patient self-tracking. Results Pelvic pain was the most prevalent problem in the self-tracking sample (57.3%), followed by gastrointestinal-related (55.9%) and lower back (49.2%) pain. Unique problems that were captured by self-tracking included pain in ovaries (43.7%) and uterus (37.2%). Pain experience was highly variable both across and within participants over time. Within-person variation accounted for 58% of the total variance in pain scores, and was large in magnitude, based on the ratio of within- to between-person variability (0.92) and the intraclass correlation (0.42). Work was the most affected daily function task (49%), and there was significant within- and between-person variability in self-management effectiveness. Prevalence rates in the EHR were significantly lower, with abdominal pain being the most prevalent (36.5%). Conclusion For enigmatic diseases, patient self-tracking as an additional data source complementary to EHR can enable learning from the patient to more accurately and comprehensively evaluate patient health history and status.

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