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Table of contents
  1. 1. Clinical Trial
  2. 2. Routine Documentation
  3. 3. Registry/Cohort Study
  4. 4. Quality Assurance
  5. 5. Data Standard
  6. 6. Patient-Reported Outcome
  7. 7. Medical Specialty
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- 4/30/20 - 1 form, 5 itemgroups, 62 items, 1 language
Itemgroups: Patient ID, Demographic Factors, Baseline health status, Treatment variables, Burden of Care
HEART FAILURE DATA COLLECTION Version 1.1.4 Revised October 31st, 2017 www.ichom.org Notice: This work was conducted using resources from ICHOM, the International Consortium for Health Outcomes Measurement (www.ICHOM.org). The content is solely the responsibility of the authors and does not necessarily represent the official views of ICHOM. Conditions: Heart Failure Treatment Approaches: Pharmacotherapy | Invasive Therapy | Rehabilitation This ODM-file contains baseline characteristics. It should be filled in at the time of the index event. The index event represents the entry into the set. This could either be after diagnosis/first encounter in an outpatient setting, or at discharge from hospital if the initial presentation was severe enough to require admission. Use of the following Scores for this standard set: KCCQ-12: Kansas City Cardiomyopathy Questionnaire-Short Version: You can obtain a license to use this instrument at your institution by visiting http://cvoutcomes.org/licenses NYHA – New York Heart Association Functional Classification: The NYHA is free for all health care organizations, and a license is not needed. PROMIS Physical Function Short Form 4a – Patient-Reported Outcome Measurement Information System: PROMIS Physical Function is free for all health care organizations, and a license is not needed. For more information, please visit http://www.healthmeasures.net/explore-measurement-systems/promis/obtain-administer-measures . As http://www.nihpromis.org/ is the official distribution site for PROMIS questionnaires and translations, only the total score will be included in this version of the standard set. Patient Health Questionnaire (PHQ-2): Copyright by Pfizer: "content found on the PHQ Screeners site is free for download and use as stated within the PHQ Screeners site, please visit http://www.phqscreeners.com/ for more information. ICHOM was supported for the Heart Failure Standard Set by GIG Cymru NHS Wales, American Heart Association, British Heart Foundation, Heart Failure Association of the ESC and European Society of Cardiology. Publication: Burns DJP, Arora J, Okunade O, Beltrame JF, Bernardez-Pereira S, Crespo-Leiro MG, et al. International Consortium for Health Outcomes Measurement (ICHOM): Standardized Patient-Centered Outcomes Measurement Set for Heart Failure Patients. JACC: Heart Failure. 2020 Mar 1;8(3):212–22. For this version of the standard set, semantic annotation with UMLS CUIs has been added.
- 4/30/20 - 1 form, 8 itemgroups, 46 items, 1 language
Itemgroups: Administrative Data, Demographic factors, Baseline health status, Prior Treatments, TREATMENT VARIABLES, Acute complications of treatment, Major surgery complications, Major interventional cardiology complications
CORONARY ARTERY DISEASE DATA COLLECTION Version 2.0.3 Revised: April 5th, 2017 International Consortium for Health Outcomes Measurement (ICHOM), Source: http://www.ichom.org/ Notice: This work was conducted using resources from ICHOM, the International Consortium for Health Outcomes Measurement (www.ICHOM.org). The content is solely the responsibility of the authors and does not necessarily represent the official views of ICHOM. Conditions: Asymptomatic Coronary Artery Disease | Stable Angina | Acute Coronary Syndrome (Includes AMI) Treatment Approaches: Lifestyle Modification | Drug Therapy | Percutaneous Coronary Intervention (PCI) | Coronary Artery Bypass Grafting (CABG) This form contains peri-interventional clinical items. The items cover a timespan from prior to the intervention (e.g. PCI or CABG) until 30 days after it. They should be assessed at the entry event and at any new index event (e.g. new revascularization procedure or new diagnosis of ACS). Questionnaires used in this standard set: Rose Dyspnea Scale: The Rose Dyspnea Scale is free for all health care organizations, and a license is not needed. More information may be found at http://www.ahjonline.com/article/S0002-8703(09)00266-X/abstract Patient Health Questionnaire (PHQ-2): The PHQ-2 is free for all health care organizations, and a license is not needed. Copyright Pfizer, more Information on http://www.phqscreeners.com/ Seattle Angina Questionnaire (SAQ-7): Due to the need for a license for use of the SAQ-7 the actual questions of SAQ-7 will not be part of this version of the standard set. Publication: McNamara RL, Spatz ES, Kelley TA, et al. Standardized Outcome Measurement for Patients With Coronary Artery Disease: Consensus From the International Consortium for Health Outcomes Measurement (ICHOM). J Am Heart Assoc. 2015;4(5):e001767. Published 2015 May 19. doi:10.1161/JAHA.115.001767 For this version of the standard set, semantic annotation with UMLS CUIs has been added.
- 11/28/17 - 1 form, 10 itemgroups, 30 items, 7 languages
Itemgroups: Alternating Trail Making, Visuoconstructional Skills, Naming, Memory, Attention, Language, Abstraction, Delayed Recall, Orientation, MoCA
- 7/10/17 - 1 form, 1 itemgroup, 16 items, 2 languages
Itemgroup: openEHR-EHR-OBSERVATION.paced_auditory_serial_addition_test.v1.xml
- 9/17/21 - 1 form, 5 itemgroups, 63 items, 1 language
Itemgroups: Pre-evaluation questions, When you answer questions in the following pages about “your significant other”, always respond in reference to the specific person you just indicated above., Pain effect on life, Significant other response pain, frequency daily activities
Kerns, R.D., Turk, D.C., & Rudy, T.E. (1985). The West Haven-Yale Multidimensional Pain Inventory (WHYMPI/MPI). Measurement Instrument Database for the Social Science. Retrieved 30.08.2020, from www.midss.ie Primary use / Purpose: The West Haven-Yale Multidimensional Pain Inventory (WHYMPI/MPI) is designed to provide a brief, psychometrically-sound, and comprehensive assessment of the important components of the chronic pain experience. The instrument is recommended for use as part of behavioral and psychological assessment strategies in the evaluation of chronic pain patients in a clinical or research setting. Background: The West Haven-Yale Multidimensional Pain Inventory (WHYMPI/MPI; Kerns, Turk, and Rudy, 1985) is a 52-item, 12-scale inventory that is divided into three parts. Part I includes five scales designed to measure important dimensions of the chronic pain experience including; 1) perceived interference of pain in vocational, social/recreational, and family/marital functioning, 2) support or concern from spouse or significant other, 3) pain severity, 4) perceived life control, and 5) affective distress. Part II assesses patients’ perceptions of the degree to which spouses or significant others display Solicitous, Distracting or Negative responses to their pain behaviors and complaints. Part III assesses patients’ report of the frequency with which they engage in four categories of common everyday activities; Household Chores, Outdoor Work, Activities Away from Home, and Social Activities. In addition to the individual scale scores, a General Activity scale score, obtained from the combination of all four activity scale scores, has been recommended for some purposes (Turk & Rudy, 1990). Patient’s responses to WHYMPI items are made on a 7-point scale. Psychometrics: Kerns, Turk and Rudy (1985) demonstrated that the internal reliability coefficients of all WHYMPI scales range from .70 to .90; the test-retest reliabilities of these scales over a 2-week interval range from .62 to .91. The validity of the WHYMPI has been supported by the results of confirmatory and exploratory factor analytic procedures. The procedures revealed that the WHYMPI scales were significantly correlated with several criterion measures of anxiety, depression, marital satisfaction, pain severity, and health locus of control. Digital Object Identifier (DOI): http://dx.doi.org/10.13072/midss.256 Compendium: Reference: Kerns, R.D., Turk, D.C., & Rudy, T.E. (1985). The West Haven-Yale Multidimensional Pain Inventory (WHYMPI). Pain, 23, 345-356. Language: English Contact Name and Address: Robert D. Kerns, Ph.D. Chief, Psychology Service VA Connecticut HCS, 950 Campbell Avenue West Haven, CT 06516. Copyright: Copyright © 1985, Robert D. Kerns, Dennis C. Turk, and Thomas E. Rudy. 1. Origin: The instrument is original. It is theoretically linked to the cognitive-behavioral conceptualization of chronic pain (Turk et al., 1983) and health assessment (Turk & Kerns, 1985). 2. Purpose: The West Haven-Yale Multidimensional Pain Inventory (WHYMPI/MPI) is designed to provide a brief, psychometrically-sound, and comprehensive assessment of the important components of the chronic pain experience. 3. Population: The WHYMPI has been demonstrated to be applicable across a variety of clinical pain conditions including chronic low back pain, temporomandibular disorders, headaches (Turk & Rudy; 1988; 1990), fibromyalgia (Turk et al., 1996), and cancer pain (Turk et al., 1998a). The WHYMPI has been demonstrated to be sensitive to change following rehabilitation (Kerns & Haythornthwaite, 1988; Kerns, Turk, Holzman & Rudy, 1986; Turk et al., 1993; Turk et al., 1998b). Its brevity, validity/reliability, self-report nature and ease of scoring make it ideal for both clinical and research purposes. The WHYMPI has been used cross culturally and has been translated into several languages including Swedish (Bergstrom et al., 1999), Dutch (Lousberg et al., 1999), German (Flor et al., 1990), Italian, Spanish, Portuguese, French, Icelandic, and Japanese. 4. Administration: Rater: The WHYMPI is a self-report questionnaire that may be administered by a qualified therapist or research assistant. Time required: 20 minutes Training: Individuals administering the WHYMPI should have an understanding of the subscales and how they relate to the cognitive-behavioral perspective of pain. Scoring: Hand scored. Part I Interference: (Question 2+3+4+8+9+13+14+17+19)/9 Support: (Question 5+10+15)/3 Pain Severity: (Question 1+7+12)/3 Life-Control: (Question 11+16)/2 Affective Distress: (6-Question 6) +18+20)/3 Part II Negative Responses: (Question 1+4+7+10)/4 Solicitous Responses: (Question 2+5+8+11+13+14)/6 Distracting Responses: (Question 3+6+9+12)/4 Part III Household Chores: (Question 1+5+9+13+17)/5 Outdoor Work: (Question 2+6+10+14+18)/5 Activities Away from Home: (Question 3+7+11+15)/4 Social Activities: (Question 4+8+12+16)/4 General Activity: (Sum of all questions in Part III)/18 *** To account for sporadic missing data, sums should be divided by the number of non-missing items. Any scale with more than 25% of its items missing should be considered missing. 5. Description: The WHYMPI (Kerns, Turk, and Rudy, 1985) is a 52-item, 12-scale inventory that is divided into three parts. Part I includes five scales designed to measure important dimensions of the chronic pain experience including; 1) perceived interference of pain in vocational, social/recreational, and family/marital functioning, 2) support or concern from spouse or significant other, 3) pain severity, 4) perceived life control, and 5) affective distress. Part II assesses patients’ perceptions of the degree to which spouses or significant others display Solicitous, Distracting or Negative responses to their pain behaviors and complaints. Part III assesses patients’ report of the frequency with which they engage in four categories of common everyday activities; Household Chores, Outdoor Work, Activities Away from Home, and Social Activities. In addition to the individual scale scores, a General Activity scale score, obtained from the combination of all four activity scale scores, has been recommended for some purposes (Turk & Rudy, 1990). Patient’s responses to WHYMPI items are made on a 7-point scale. 6. Coverage: The instrument is recommended for use as part of behavioral and psychological assessment strategies in the evaluation of chronic pain patients in a clinical or research setting. 7. Reliability: Kerns, Turk and Rudy (1985) demonstrated that the internal reliability coefficients of all WHYMPI scales range from .70 to .90; the test-retest reliabilities of these scales over a 2-week interval range from .62 to .91. 8. Validity: The validity of the WHYMPI has been supported by the results of confirmatory and exploratory factor analytic procedures. The procedures revealed that the WHYMPI scales were significantly correlated with several criterion measures of anxiety, depression, marital satisfaction, pain severity, and health locus of control 9. Responsiveness: Studies have demonstrated the sensitivity of the WHYMPI to improvements in pain and functioning (Kerns & Haythornthwaite, 1988; Kerns, Turk, Holzman & Rudy, 1986; Turk et al., 1993; Turk et al., 1998b); the ability of several of its scales to discriminate level of depressive symptom severity (Kerns & Haythornthwaite, 1988); the viability of the Pain Severity and Activity scales as brief and reliable measures of pain intensity and adaptive functioning (Holmes & Stevenson, 1990; Rudy, Turk, Kubinski, & Zaki, 1995); and the predictive utility of the Part II scales in the role of social interaction in the maintenance of pain and disability (Kerns, Haythornthwaite, Southwick, & Giller, 1990; Faucet & Levine, 1991). 10. Strengths: The strengths of the WHYMPI are its brevity, ease of administration, demonstrated reliability and validity, face validity and patient acceptance, and demonstrated utility in multiple clinical and research investigations. 11. Weakness: One weakness of the WHYMPI is that the Life-Control subscale is comprised of only two items. 12. Bibliography:
- 9/17/21 - 1 form, 1 itemgroup, 9 items, 1 language
Itemgroup: Behavioral Activation for Depression Scale
Kanter, J. W., Mulick, P. S., Busch, A. M., Berlin, K. S., & Martell, C. R.. (2012). Behavioral Activation for Depression Scale (BADS) (Short Form). Measurement Instrument Database for the Social Science. Retrieved 23.07.2020 from www.midss.ie Key references: Kanter, J. W., Mulick, P. S., Busch, A. M., Berlin, K. S., & Martell, C. R. (2007). The Behavioral activation for depression scale (BADS): Psychometric properties and factor structure. Journal of Psychopathology and Behavioral Assessment, 29, 191-202. Kanter, J. W., Rusch, L. C., Busch, A. M., & Sedivy, S. K. (2009). Validation of the behavioral activation for depression scale (BADS) in a community sample with elevated depressive symptoms. Journal of Psychopathology and Behavioral Assessment, 31, 36-42. Manos, R. C., Kanter, J. W., & Luo, W. (2011). The behavioral activation scale for depression-short form: Development and validation. Behavior Therapy, 42, 726-739. Primary use / Purpose: The questionnaire is designed to measure changes in avoidance and activation over the course of Behavioral Activation for depression. Background: The Behavioral Activation for Depression Scale (BADS) can be used to track changes weekly in the behaviors hypothesized to underlie depression and specifically targeted for change by behavioral activation. It examines changes in the following areas: activation, avoidance/rumination, work/school impairment, and social impairment. The BADS consists of 25 questions, each rated on a seven point scale ranging from 0 (not at all) to 6 (completely). The short-form BADS consists of 9 items rated using the same scale as the long-form. Psychometrics: Data on the scale's internal consistency, construct and predictive validity, and factor structure have been presented (Kanter et al., 2007; Kanter et al., 2009). Positive findings on the psychometric properties of the short-form BADs have also been presented (Manos et al., 2011) Other Information: To score the BADS, items from all scales other than the Activation scale are reverse-coded and then all items are summed. To score the subscales, no items are reverse-coded. This process allows high scores on the total scale and the subscales to be represented by the scale and subscale names. In other words, for the total scale, higher scores represent increased activation, while for the Social Impairment subscale, higher scores represent increased social impairment. Digital Object Identifier (DOI): http://dx.doi.org/10.13072/midss.109