Experience

At Endpoint Outcomes, our work is focused on producing valid, reliable results for our clients.

 

THERAPEUTIC AREA EXPERIENCE

Our experience spans a variety of services across many therapeutic areas.

Cardiology - Vascular Disease
Disease/ Condition/ SyndromeLiterature Review/ Gap AnalysisDevelopmentPsychometrics/ StatisticsCommunication/ StrategyExit InterviewsOther (e.g., Delphi Panel, eCOA, Survey)
Cardiomyopathy
Reynaud's Disease
Endocrinology
Disease/ Condition/ SyndromeLiterature Review/ Gap AnalysisDevelopmentPsychometrics/ StatisticsCommunication/ StrategyExit InterviewsOther (e.g., Delphi Panel, eCOA, Survey)
Obesity
Dermatology/Aesthetics
Disease/ Condition/ SyndromeLiterature Review/ Gap AnalysisDevelopmentPsychometrics/ StatisticsCommunication/ Strategy
Exit InterviewsOther (e.g., Delphi Panel, eCOA, Survey)
Acne
Atopic Dermatitis
Body contouring/
Cryolipolysis
Facial Lines
Fine lines
Hyperhydrosis
Jowls
Lower Eyelid Steatoblepharon
Masseter Muscle Hypertrophy
Palmoplantar Psoriasis
Periorbital Aesthetics
Plaque Psoriasis
Platysma
Rosacea
Sebum Production
Skin Quality
Gastroenterology
Disease/ Condition/ SyndromeLiterature Review/ Gap AnalysisDevelopmentPsychometrics/ StatisticsCommunication/ StrategyExit InterviewsOther (e.g., Delphi Panel, eCOA, Survey)
Abdominal Pain
Bowel Prep
Celiac Disease
Chronic Constipation
Crohn's Disease
Eosinophilic Esophagitis
Functional Dysepsia
Gastroesophageal Reflux Disease
Gastroparesis
Irritable Bowel Syndrome
Short Bowel Syndrome
Genetic/Rare Diseases
Disease/ Condition/ SyndromeLiterature Review/ Gap AnalysisDevelopmentPsychometrics/ StatisticsCommunication/ StrategyExit InterviewsOther (e.g., Delphi Panel, eCOA, Survey)
Alagille Syndrome
Angelman Syndrome
Creatine transporter deficiency
Dravet Syndrome
Eosinophilic Esophagitis
Fabry Disease
Fatty Acid Oxidation Disorders (FAOD)
Gastroesophageal Junction Cancer
Gastroparesis
Glycogen Storage Disorder Type 1a (GSD1a)
Glycogen Storage Disorder Type III (GSDIII)
Hemophilia
Hereditary ATTR Amyloidosis (hATTR)
Hypoparathyroidism
Idiopathic Pulmonary Fibrosis
Impulsive Aggression
Intrahepatic Cholestasis of Pregnancy
Kabuki Syndrome
Leber Congenital Amaurosis - Type 10 (LCA10)
Mastocytosis
Methylmalonic Acidemia
Multiple Myeloma
Myelodysplastic Syndromes (MDS)
Nonresectable or Metastatic Cholangiocarcinoma with an IDH1 Mutation
Nontuberculous Mycobacterial (NTM) Lung Disease
Ornithine Transcarbamylase (OTC)
Porphyria
Primary Biliary Cirrhosis/Cholangitis
Primary Hyperoxaluria (PH1)
Primary Mitochondrial Myopathies (PMM)
Propionic Acidemia
Pyruvate Kinase Deficiency
Raynaud's Disease
Sanfilippo Disorder
Short Bowel Syndrome
Sickle Cell Anemia
Tumor-induced Osteomalacia (TIO)
Wilson's Disease
X-Linked Hypophosphatemia
Hematology
Disease/ Condition/ SyndromeLiterature Review/ Gap AnalysisDevelopmentPsychometrics/ StatisticsCommunication/ StrategyDelphi PanelOther (e.g., Delphi Panel, eCOA, Survey)
Hemophilia
Hypoparathyroidism
Pyruvate Kinase Deficiency
Sickle Cell Anemia
Hepatology
Disease/ Condition/ SyndromeLiterature Review/ Gap AnalysisDevelopmentPsychometrics/ StatisticsCommunication/ StrategyExit InterviewsOther (e.g., Delphi Panel, eCOA, Survey)
Primary Biliary Cirrhosis/Cholangitis
Primary Hyperoxaluria
Nephrology
Disease/ Condition/ SyndromeLiterature Review/ Gap AnalysisDevelopmentPsychometrics/ StatisticsCommunication/ StrategyExit InterviewsOther (e.g., Delphi Panel, eCOA, Survey)
Kidney Disease
Primary Hyperoxaluria (PH1)
Neurology
Disease/ Condition/ SyndromeLiterature Review/ Gap AnalysisDevelopmentPsychometrics/ StatisticsCommunication/ StrategyExit InterviewsOther (e.g., Delphi Panel, eCOA, Survey)
Alzheimer's disease
Autism
Bruxism
Cataplexy/Narcolepsy
Cervical Dystonia
Chronic Lower Back Pain
Dravet Syndrome
Epilepsy
Fibromyalgia
Migraine
Multiple Sclerosis
Neuropathic Pain
Not Specified
Parkinson's Disease
Radicular pain
Spasticity
Tardive Dyskinesia
Tension Headache
Obstetrics/Gynecology (Women’s Health)
Disease/ Condition/ SyndromeLiterature Review/ Gap AnalysisDevelopmentPsychometrics/ StatisticsCommunication/ StrategyExit InterviewsOther (e.g., Delphi Panel, eCOA, Survey)
Endometriosis
Leiomyomas
Uterine Fibroids
Vulvodynia
Oncology
Disease/ Condition/ SyndromeLiterature Review/ Gap AnalysisDevelopmentPsychometrics/ StatisticsCommunication/ StrategyExit InterviewsOther (e.g., Delphi Panel, eCOA, Survey)
Acute Myeloid Leukemia (AML)
Basel Cell Carcinoma
Breast Cancer
Colorectal Cancer
Gastroesophageal Junction Cancer
Glioma
Lung Cancer
Metastatic Solid Malignancy
Multiple Myeloma
Myelodysplastic Syndromes (MDS)
Nonresectable or Metastatic Cholangiocarcinoma with an IDH1 Mutation
Not Specific
Prostate Cancer
Thyroid Cancer
Urothelial Cancer
Ophthalmology
Disease/ Condition/ SyndromeLiterature Review/ Gap AnalysisDevelopmentPsychometrics/ StatisticsCommunication/ StrategyExit InterviewsOther (e.g., Delphi Panel, eCOA, Survey)
Diabetic Macular Edema
Dry Eye
Geographic Atrophy
Glaucoma
Leber Congenital Amaurosis - Type 10 (LCA10)
Presbyopia
Pediatrics
Disease/ Condition/ SyndromeLiterature Review/ Gap AnalysisDevelopmentPsychometrics/ StatisticsCommunication/ StrategyExit InterviewsOther (e.g., Delphi Panel, eCOA, Survey)
Acne
Alagille Syndrome
Atopic Dermatits
Autism Spectrum Disorder
Cataplexy/Narcoplexy
Dravet Syndrome
Eosinophilic Esophagitis
Glycogen Storage Disorder Type 1a (GSD1a)
Glycogen Storage Disorder Type III (GSDIII)
Hemophilia
Impulsive Aggression
Kabuki Syndrome
Methylmalonic Acidemia
Ornithine Transcarbamylase (OTC)
Primary Hyperoxaluria (PH1)
Propionic Acidemia
Pyruvate Kinase Deficiency
Sanfilippo Disorder
Creatine transporter deficiency
Psychiatry
Disease/ Condition/ SyndromeLiterature Review/ Gap AnalysisDevelopmentPsychometrics/ StatisticsCommunication/ StrategyExit InterviewsOther (e.g., Delphi Panel, eCOA, Survey)
Binge Eating
Impulsive Aggression
Postpartum depression
Intermittent explosive disorder
Post-traumatic stress disorder
Pulmonary/Respiratory Diseases
Disease/ Condition/ SyndromeLiterature Review/ Gap AnalysisDevelopmentPsychometrics/ StatisticsCommunication/ StrategyExit InterviewsOther (e.g., Delphi Panel, eCOA, Survey)
Allergic Rhinitis
Asthma
Idiopathic Pulmonary Fibrosis
Mastocytosis
Nontuberculous Mycobacterial (NTM) Lung Disease
Interstitial lung disease
Rheumatology
Disease/ Condition / SyndromeLiterature Review/ Gap AnalysisDevelopmentPsychometrics/ StatisticsCommunication/ StrategyExit InterviewsOther (e.g., Delphi Panel, eCOA, Survey)
Gouty Arthritis
Osteoarthritis
Rheumatology
Urology
Disease/ Condition/ SyndromeLiterature Review/ Gap AnalysisDevelopmentPsychometrics/ StatisticsCommunication/ StrategyExit InterviewsOther (e.g., Delphi Panel, eCOA, Survey)
Interstitial cystitis
Overactive bladder
Premature Ejaculation
i

PUBLICATIONS

Published works highlighting our projects and research.

Journal Articles

Dress A, Theodore-Oklota C, Egan S, Paulich M, Blatt E, Evans CJ. The patient-reported experience of living with Wilson disease. Future Rare Disease 2021 (ePub ahead of print).

Goldstein AT, Quintana Diez PM, Kapanadze S, Cala ML, Evans CJ, Whyte JL, Christoph A. The vulvodynia experience questionnaire: qualitative development of a new patient-reported outcome measure for vulvodynia. The Journal of Sexual Medicine 2020;17:2055-2066. https://doi.org/10.1016/j.jsxm.2020.07.010

Swigris JJ, Andrae DA, Churney T, Johnson N, Scholand MB, White ES, Matsui A, Raimundo K, Evans CJ. Development and Initial Validation Analyses of the Living with Idiopathic Pulmonary Fibrosis (L-IPF) Questionnaire. Am J Respir Crit Care Med. 2020; online ahead of print. https://www.atsjournals.org/doi/abs/10.1164/rccm.202002-0415OC

Andrae DA, Hanlon J, Cala ML, Scippa K, Graham C, Witherspoon B, Shao JZ, Reasner D. Evaluation and Validation of the Modified Reflux Symptom Questionnaire-Electronic Diary in Patients With Persistent Gastroesophageal Reflux Disease. Clin Transl Gastroenterol. 2020;11(1):e00117. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7056048/pdf/ct9-11-e00117.pdf

Theodore-Oklota C, Egan S, Paulich M, Evans C, Hartman D, Hoffman D, Bjornsson H. Caregiver-reported clinical characteristics and the burden associated with Kabuki syndrome. American Journal of Medical Genetics Part A. 2020;1-9. https://onlinelibrary.wiley.com/doi/full/10.1002/ajmg.a.61584

Chapple C, Kelleher C, Siddiqui E, Andrae D, Johnson N, Payne C, Homma Y, Hakimi Z, Evans CJ, Lyn N, Kopp Z. Validation of the overactive bladder assessment tool (OAB-BAT): a potential alternative to the standard bladder diary for monitoring OAB outcomes.  European Urology Focus 2019. https://doi.org/10.1016/j.euf.2020.12.001

Ceresoli-borroni G, Liranso T, Brittain ST, Connor DF, Evans CJ, Findling RL, Hwang S, Fry N, Candler SA, Robb AS, Saylor KE, Nasser A and Schwabe S. Application of the Impulsive Aggression Diary in Adolescents with Attention-Deficit/Hyperactivity Disorder. J Child Adolesc Psychopharmacol. 2019;29(8):599-607. https://www.ncbi.nlm.nih.gov/pubmed/31343272

Ceresoli-Borroni G, Liranso T, Brittain S, Connor DF, Evans CJ, Findling RL, Hwang S, Candler S, Robb AS, Nasser A, Schwabe S.  A novel assessment tool for impulsive aggression in children with attention-deficit/hyperactivity disorder. Journal of Child and Adolescent Psychopharmacology 2019; 29(8): 592-598.

Salek S, Boscoe AN, Piantedosi S, Egan S, Evans CJ, Wells T et al. Development of the Pyruvate Kinase Deficiency Diary (PKDD) and Pyruvate Kinase Deficiency Impact Assessment (PKDIA): Disease-Specific Assessments. Eur J Haematol. 2019 (epub ahead of print). https://www.ncbi.nlm.nih.gov/pubmed/31880847

McCloskey L, Sherman ML, John MS, Siegel H, Whyte J, Iverson R, Lee-Parritz A, Bernstein J. Navigating a ‘Perfect Storm’on the Path to Prevention of Type 2 Diabetes Mellitus After Gestational Diabetes: Lessons from Patient and Provider Narratives. Maternal and Child Health Journal. 2019 May 15;23(5):603-12. https://www.ncbi.nlm.nih.gov/pubmed/30949932

Wang ML, Lemon SC, Clausen K, Whyte J, Rosal MC. Design and methods for a community-based intervention to reduce sugar-sweetened beverage consumption among youth: H 2 GO! study. BMC public health. 2016 Dec;16(1):1150. https://doi.org/10.1186/s12889-016-3803-5

Dumais KM, Dias N, Khurana L, Gary ST, Witherspoon B, Evans CJ, Dallabrida SM. Preferences for use and design of electronic patient‑reported outcomes in patients with chronic obstructive pulmonary disease. Patient (2019). https://doi.org/10.1007/s40271-019-00376-9.

Grace RF, Cohen J, Egan S, Wells T, Witherspoon B, Ryan A, Salek SS, Bodie S, Klaasen RJ. The Burden of Disease in Pyruvate Kinase Deficiency: Patients’ Perception of the Impact on Health-Related Quality of Life. European Journal of Haematology 2018; 101: 758-765. https://doi.org/10.1111/ejh.13128

Hwang S, Van nooten F, Wells T, Ryan A, Crawford B, Evans C, English, M. Neuropathic pain: A patient-centred approach to measuring outcomes. Health Expectations 2018; 1-13. https://doi.org/10.1111/hex.12673

Kelleher C, Chapple C, Johnson N, Payne C, Homma Y, Hakimi Z, Siddiqui E, Evans C, Egan S, Kopp Z. Development of an overactive bladder assessment tool (BAT): A potential improvement to the standard bladder diary. Neurourology and Urodynamics 2017; 1-10. https://doi.org/10.1002/nau.23479

Benmedjahed K, Wang G, Lambert J, Evans C, Hwang S, Black J, Johns MW.  Assessing sleepiness and cataplexy in children and adolescents with narcolepsy: a review of current patient-reported measures. Sleep Medicine 2017; 32:143-149. https://dx.doi.org/10.2147%2FNSS.S140143

Hudgens S, Evans C, Philips E, Hill M.  Psychometric validation of the Dysphagia Symptom Questionnaire in patients with eosinophilic esophagitis treated with budesonide oral suspension. Journal of Patient Reported Outcomes 2017;1:3. https://dx.doi.org/10.1186%2Fs41687-017-0006-5

Wang YG, Benmedjahed K, Lambert J, Evans C, Hwang S, Black J, Johns MW.  Assessing narcolepsy and cataplexy in children and adolescents: development of a cataplexy diary and the ESS-CHAD. Nature and Science of Sleep 2017;9:201-211. https://dx.doi.org/10.2147%2FNSS.S140143

Kamath BM, Abetz-Webb L, Kennedy C, Hepburn B, Gauthier MJohnson N, Medendorp S, Dorenbaum A, Todorova L, Shneider BL. Development of a Novel Tool to Assess the Impact of Itching in Pediatric Cholestasis.  The Patient – Patient-Centered Outcomes Research 2017;10. https://doi.org/10.1007/s40271-017-0266-4

Boeltzig-Brown H, Fleming A, Heyman M, Gauthier M, Cully J, Foley S. A Systematic Review of State Vocational Rehabilitation Agency-Based Literature. Rehabilitation Research, Policy, and Education 2017;31(4):352-371. http://dx.doi.org/10.1891/2168-6653.31.4.352

Chapple CR, Kelleher CJ, Evans CJ, Kopp Z, Siddiqui E, Johnson N, Mako M. A narrative review of patient-reported outcomes in overactive bladder: what is the way of the future? European Urology 2016; 70(5): 799-805. https://doi.org/10.1016/j.eururo.2016.04.033

Alexis A, Daniels S, Johnson N, Pompilus F, Burgess S, Harper J. Development of a new patient-reported outcome measure for facial acne: The Acne Symptom and Impact Scale (ASIS). Journal of Drugs in Dermatology 2014;13(3):333-340. https://www.ncbi.nlm.nih.gov/pubmed/24595580

Brubaker L, Piault E, Tully S, Evans CJ, Bavendam T, Beach J, Yeh Y, Kopp ZS, Khullar V, Kelleher CJ, Trocio J. Validation study of the Self-Assessment Goal Achievement (SAGA) questionnaire for lower urinary tract symptoms. International Journal of Clinical Practice 2013;67:342-350. https://doi.org/10.1111/ijcp.12087

Stokes J, Evans C, Pompilous F, Shields A, Summers K. Development of a questionnaire to assess the impact of chronic low back pain for use in regulated clinical trials. The Patient: Patient-Centered Outcomes Research 2013;6(4):291-305. https://doi.org/10.1007/s40271-013-0026-z

Johansen KL, Finklestein FO, Revecki DA, Evans C, Wan S, Gitlin M, Agodoa IL. Systematic review of the impact of erythropoiesis-stimulating agents on fatigue in dialysis patients. Nephrol Dial Transplant 2012;27(6):2418-25. https://doi.org/10.1093/ndt/gfr697

Piault E, Doshi S, Brandt B, Angun C, Evans CJ, Bergqvist A, Torcio J. Linguistic validation of translation of the self-assessment goal achievement (saga) questionnaire from English. Health and Quality of Life Outcomes 2012;10:40. https://doi.org/10.1186/1477-7525-10-40

Bombardier C, Evans CJ, Katz N, Mardekian J, Zlateva G, Simon L. Further qualification of a therapeutic responder index for patients with chronic low back pain. Journal of Rheumatology 2011;38:362-369. https://doi.org/10.3899/jrheum.091444

Brubaker L, Khullar V, Piault E, Evans CJ, Bavendam T, Beach J, Yeh Y, Kopp ZS, Kelleher CJ, Trocio J. Goal attainment scaling in patients with lower urinary tract symptoms: development and pilot testing of the Self-Assessment Goal Achievement (SAGA) questionnaire. Int Urogynecol 2011;22:937-946. https://doi.org/10.1007/s00192-011-1382-7

Evans CJ, Chiou C-F, Fitzgerald KA, Evans WJ, Ferrell BR, Dale W, Fried LP, Gandra SR, Dennee-Sommers B, Patrick DL. Development of a new patient-reported outcome measure in sarcopeina. Journal of American Medical Directors Association 2011;12:226-233. https://doi.org/10.1016/j.jamda.2010.09.010

Ng-Mak DS, Fitzgerald K, Norquist J, Banderas B, Nelsen L, Evans C, Healy C, Ho T, Bigal M. Key concepts in migraine postdrome: a qualitative study to develop a post-migraine questionnaire. Headache 2011;51:105-117. https://doi.org/10.1111/j.1526-4610.2010.01817

Boeltzig H, Klemm M, Fleming A, Cully J, Infante P, Lewandowski K, Gottshall C, Szenamici K, Luse MM, Mullins T. A selected look at the literature base on vocational rehabilitation and implications for future research. Report for the U.S. Department of Education, National Institute on Disability and Rehabilitation Research (U.S. DOE/NIDRR). 2010. http://www.vr-rrtc.org/sites/vr-rrtc.org/files/docs/Synthesis%20Report.pdf

Boeltzig H, Kusminsky MN, Foley SM, Klemm M. Evaluation of the Parent-Professional Leadership in Education (APPLE) project: Final Report. Evaluation Report for the Federation for Children with Special Needs, Boston, MA; 2010.

Chakravarthy U, Wong T, Fletcher A, Piault E, Evans C, Zlateva G, Buggage R, Pliel A, Mitchell P. Clinical risk factors for age-related macular degeneration: a systematic review and meta-analysis. BMC Ophthalmology 2010;10:31. https://doi.org/10.1186/1471-2415-10-31

Johansen KL, Finkelstein F, Revicki D, Gitlin M, Evans C, Mayne TJ. Systematic review and meta-analysis of exercise tolerance and physical functioning in dialysis patients treated with erythropoiesis-stimulating agents.  American Journal of Kidney Diseases 2010;55(3):535-548. https://doi.org/10.1053/j.ajkd.2009.12.018

Langdon SW, Dennee-Sommers B. Exploring the relationships between self-objectification, rationales, and use of water as a strategy for appetite suppression. Psychology, Health and Medicine 2010;15:17-25. https://doi.org/10.1080/13548500903431519

Silverman S, Sadosky A, Evans C, Yeh Y, Alvir J, Zlateva G. Toward characterization and definition of fibromyalgia severity. BMC Musculoskeletal Disorders 2010;11:66. https://doi.org/10.1186/1471-2474-11-66

Lasch KF, Evans CJ, Schatell D. A qualitative analysis of patient-reported symptoms of anemia. Nephrology Nursing Journal 2009;36(6):621-633. https://www.ncbi.nlm.nih.gov/pubmed/20050515

Sadosky A, Dukes E, Evans C. Reliability of a 1-week recall period for the medical outcomes survey sleep scale (mos-s) in patients with fibromyalgia. Health and Quality of Life Outcomes 2009;7(12):1-20. https://doi.org/10.1186/1477-7525-7-12

Evans C, Schien J, Nelson W, Crespi S, Gargiulo K, Horowicz-Mehler N, Panchal S. Improving patient and nurse outcomes: a comparison of nurse tasks and time associated with two patient-controlled analgesia modalities using Delphi panels. Pain Management Nursing 2007;8(2):86-95. https://doi.org/10.1016/j.pmn.2007.03.004

Piault E, Evans C, Espindle D, Kopp Z, Brubaker L, Abrams P. Development and validation of the overactive bladder satisfaction (OAB-S) questionnaire. Neurology and Urodynamics 2007;1-12. https://doi.org/10.1002/nau.20455

Simon L, Evans C, Katz N, Bombardier C, West C, Robbins J, Copley-Merriman C, Markman J, Coombs J. Preliminary development of a responder index in chronic low back pain. Journal of Rheumatology 2007;34(6):1386-1391. https://www.ncbi.nlm.nih.gov/pubmed/17552065

Evans CJ, Parthan A, Le K. Economic and humanistic burden of Fibromyalgia in the USA. Expert Opinion and Review in Pharmacoeconomics and Outcomes Research 2006; 6(3): 303-314. https://doi.org/10.1586/14737167.6.3.303

Parthan A, Evans CJ, Le K. Chronic low back pain: epidemiology, economic burden and patient reported outcomes in the USA. Expert Opinion and Review in Pharmacoeconomics and Outcomes Research 2006;6(3):359-369. https://doi.org/10.1586/14737167.6.3.359

Feldman S, Evans C, Russell M. Systematic treatment for moderate to severe psoriasis: estimates of failure rates and direct medical costs in a north-eastern managed care plan. Journal of Dermatological Treatment 2005;16(1):37-42. https://doi.org/10.1080/09546630510025941

Evans C. Health and work productivity assessment: state of the art or state of flux? Journal of Occupational and Environmental Health 2004;46:S3-S11. https://doi.org/10.1097/01.jom.0000126682.37083.fa

Evans C, Tavakoli M, Crawford B. Use of quality adjusted life years and life years gained as benchmarks in economic evaluations: a critical appraisal. Health Care Management Science 2004;7(1):43-49. https://www.ncbi.nlm.nih.gov/pubmed/14977093

Evans C, Trudeau E, Mertzanis P, Marquis P, Pena B, Wong J, Mayne T. Development and validation of the pain treatment satisfaction scale (ptss): a patient satisfaction questionnaire for use in patients with acute and chronic pain. Pain 2004;112:254-266. https://doi.org/10.1016/j.pain.2004.09.005

Evans C, Crawford B, Doyle J. Usefulness of resource utilization estimates from piggyback studies in rheumatoid arthritis. Expert Review of Pharmacoeconomics and Outcomes Research 2003;3(6):685-689. https://doi.org/10.1586/14737167.3.6.685

Evans C, Mertzanis P, Abetz L. Measurement strategies for indirect costs in economic evaluations. Expert Review of Pharmacoeconomics and Outcomes Research 2003;3(6):703-716. https://doi.org/10.1586/14737167.3.6.703

Evans C. Closing the credibility gap in patient reported outcomes. Expert Review of Pharmacoeconomics and Outcomes Research 2002;1-2. https://doi.org/10.1586/14737167.2.1.1

Evans C, Crawford B. Proxy reports in pharmacoeconomic studies: applications and accuracy for resource utilization estimates. Journal of Research in Pharmaceutical Economics 2001;11(2):23-35.

Crawford B, Dukes E, Evans C. The value of providing quality of life information to managed care decision-makers. Drug Benefit Trends 2001;13(7):45-52.

Henke C, Genco R, Killoy W, Miller D, Evans C, Finkelman R. An economic evaluation of a chlorhexadine chip for treating chronic periodontitis: the CHIP (CHlorhexadine In Periodontitis) study. JADA 2001;132:1557-1569. https://doi.org/10.14219/jada.archive.2001.0091

Evans C, Crawford B. Data collection methods in prospective economic evaluations: how accurate are the results? Value in Health 2000;3(4):277-286. https://doi.org/10.1046/j.1524-4733.2000.34005.x

Evans C, Crawford B. Expert judgement: guidance and future use. PharmacoEconomics 2000;17(6):545-553. https://doi.org/10.2165/00019053-200017060-00002

Evans C, Crawford B. Direct medical costing for economic evaluations: methodologies and impact on study validity. Drug Information Journal 2000;34:173-184. https://doi.org/10.1177%2F009286150003400123

Evans C, Dukes E, Crawford B. The role of pharmacoeconomic information in the managed care formulary decision making process. Journal of Managed Care Pharmacy 2000;6(2):112-121.

Evans C, Crawford B. Patient self-reports in pharmacoeconomic studies: their use and impact on study validity. PharmacoEconomics 1999;15(3):241-256. https://doi.org/10.2165/00019053-199915030-00004

Nuijten MJC, Hadjadjeba L, Evans C, van den Berg J. Cost-effectiveness of fluvoxamine in the treatment of recurrent depression in France. PharmacoEconomics 1998;14(4):433-445. https://www.jmcp.org/doi/pdf/10.18553/jmcp.2000.6.2.108

Evans C. The use of consensus methods and expert panels in pharmacoeconomic studies: practical applications and methodological shortcomings. PharmacoEconomics 1997;12(2 Pt1):121-29. https://doi.org/10.2165/00019053-199712020-00003

Presentations

Witherspoon B, Egan S, Gauthier M. Evaluating intercoder reliability in qualitative research analysis. ISOQOL 27th Annual Conference; October 19-23, 2020.

Egan S, Gauthier G, Witherspoon B, Scippa K, Graham C, Whyte J, Paulich M, Ryan A, McDonold S, Evans C. Development of a novel, non-disease specific peditaric faces scale. ISOQOL 27th Annual Conference; October 19-23, 2020.

Foster B, Andrae D, Pohl C. Describing patterns in longitudinal diary data. ISOQOL 27th Annual Conference; October 19-23, 2020.

Andrae D, Foster B. Interpretation guidelines for clinical relevance of patient-reported outcome measures. Workshop at the ISOQOL 27th Annual Conference; October 19-23, 2020.

Egan S, Ryan A, Graham C, McDonold S, Paulich M, Scippa K, Whyte J, Evans C. Illustrations developed as tools for use in pediatric qualitative interviews. ISOQOL 27th Annual Conference; October 20, 2020.

Johnson N, Wells T. Examination of a modified approach to the Delphi technique in health outcomes research. ISOQOL 27th Annual Conference; October 20, 2020.

Stokes J, Shirneshan E, Graham CA, Paulich M, Johnson N. Exploring the experience of living with and treating presbyopia. American Academy of Optometry Annual Meeting; October 7-10, 2020.

Johnson N, Evans C, Shirneshan E, Stokes J, Wells T, Campbell J. Development of patient-reported outcome instruments to evaluate impacts and coping behaviors in presbyopia. Academy of Optometry Annual Meeting; October 7-10, 2020.

Foster, B, Andrae, D, Vig, P, McKibben, A & Bowlus, C. Psychometric evaluation of the Adult Itch Reported Outcome tool, a worst itch numeric rating scale in adults with cholestatic liver disease. The Digital International Liver Congress™ 2020; August 27–29, 2020.

Egan S, Gauthier M, Witherspoon B, Scippa K, Graham C, Whyte J, Paulich M, Ryan A, McDonold S. Development of a pediatric faces scale for use in multiple disease areas. Virtual ISPOR 2020; May 18-20, 2020.

Butler J, Dress A, Theodore-Oklota C, Egan S, Paulich M, Byrd C, Evans C. The Humanistic Burden of Glycogen Storage Disease Type Ia: The Impact on Symptoms, Diet, and Health-related Quality of Life. Virtual ISPOR 2020; May 18-20, 2020.

Dress A, Butler J, Theordore-Oklota C, Egan S, Paulich M, Hribral E, Evans C. Development of Conceptual Frameworks and Pilot PRO Measures in OTC Deficiency. Virtual ISPOR 2020; May 18-20, 2020.

Egan S, Ryan A, Graham C, McDonold S, Paulich M, Pohl C, Scippa K, Whyte J, Evans C. Development of Illustrations for Use in Pediatric Qualitative Interviews. Virtual ISPOR 2020; May 18-20, 2020.

Foster B, Gauthier M, Vig P, Jaecklin T, Kamath BM, Andrae D. Itch Reported Outcome Tool For Caregivers Of Pediatric Patients With Cholestatic Liver Disease: An Analysis Of Validation And Scoring From The ICONIC Maralixibat Study. Virtual ISPOR 2020; May 18-20, 2020.

Foster B, Andrae D, Pohl C. A descriptive framework for understanding patterns of in intensive longitudinal patient diaries. Virtual ISPOR 2020; May 18-20, 2020.

Foster, B, Gauthier, M, Vig, P, Jaecklin, T, Kamath, B.M. & Andrae D. Natural variability of pruritus in Alagille syndrome; an analysis from the ICONIC study utilizing the Itch Reported Outcome Observer (ItchRO[Obs]) tool. Presented at AASLD, The Liver Meeting®; November 8–12, 2019, Boston, USA.

Gauthier M, Johnson N. Identification and recommendations of readability tests for the evaluation of clinical outcome assessments (COAs). International Society for Quality of Life Research 26th Annual Conference; San Diego, CA: October 21, 2019.

Egan S, Evans C, Ryan A. Development of Illustrations to Facilitate Concept Elicitation Interviews with Pediatric Participants. ISPOR 24th Annual International Meeting; New Orleans, LA, USA: May 18-22, 2019.

Pohl C, Cala ML, Evans C. The role of treatment expectancy on the placebo response as it pertains to the development and implementation of patient-reported outcome measures. ISPOR 24th Annual International Meeting; New Orleans, LA, USA: May 18-22, 2019.

Goldstein A, Quintana Diez P, Kapanadze S, Cala ML, Evans C, Whyte J, Christoph A. The vulvodynia experience questionnaire (VEQ): Qualitative development of a new patient-reported outcome measure for vulvodynia. International Society for the Study of Women’s Sexual Health Annual Meeting 2019; Atlanta, Georgia: March 7-10, 2019.

Marsh E, Harrington A, Johnson N, Pohl C, Trupin S, Robinson J, Shepherd J, Jacoby A, Lukes A, Berman J, Wang KC, Gillard P, Segars J. Development of a screening tool for women with symptomatic uterine fibroids (UF). American Society for Reproductive Medicine; Denver, Colorado; October 6-10, 2018.

Cala ML, Graham CA, Lipton RB, Lyn N, Dodick DW, Burk C, Yu JS, Evans CJ, Viswanathan HN. The Activity Impairment in Migraine – Diary (AIM-D): A novel migraine-specific patient-reported outcome measure to assess functioning based on activity impairment in episodic and chronic migraine patients. 12th European Headache Federation Congress; Florence, Italy; September 28-30, 2018.

Cala ML, Graham CA, Lipton RB, Lyn N, Dodick DW, Burk C, Yu JS, Evans CJ, Viswanathan HN. The Activity Impairment in Migraine – Diary (AIM-D): A novel migraine-specific patient-reported outcome measure to assess functioning based on activity impairment in episodic and chronic migraine patients. 17th Biennial Migraine Trust International Symposium (MTIS); London, UK; September 6-9, 2018.

Cala ML, Graham CA,  Lipton RB,  Lyn N, Dodick DW,  Burk C, Yu JS, Evans CJ,  Viswanathan HN. The Activity Impairment in Migraine – Diary (AIM-D): A novel migraine-specific patient-reported outcome measure to assess functioning based on activity impairment related to migraine in episodic and chronic migraine patients. 60th Annual Scientific Meeting of the American Headache Society; San Francisco, CA: June 28 – July 1, 2018.

Egan S, Gauthier M, Cala ML, Khurana L, Dallabrida SM, Evans C. Patient definitions of improvement: Most frequent reasons for defining disease improvement as reported by patients with diabetes, chronic obstructive pulmonary disease (COPD), depression or osteoarthritis (OA). International Society for Pharmacoeconomics and Outcomes Research 2018 Meeting; Baltimore, MD: May (19-23), 2018.

Gauthier M, Egan S, Ryan A, Khurana L, Dallabrida SM, Evans C. Do words matter? Patient perspectives on conceptually similar symptoms and impacts frequently utilized in patient-reported outcome measures. International Society for Pharmacoeconomics and Outcomes Research 2018 Meeting; Baltimore, MD: May (19-23), 2018.

Graney B, Johnson N, Evans C, Ryan A, et al. Living with Idiopathic Pulmonary Fibrosis (L-IPF): Developing a Patient-Reported Symptom and Impact Questionnaire to Assess Health-Related Quality of Life in IPF. American Thoracic Society Conference; Washington DC: 19-24 May 2017.

Tutuncu A, Egan S, Evans CJ, Cala ML, Ryan AKhurana L, Dallabrida SM.  Proximal versus distal impacts of disease: Drivers of bothersomeness ratings in Patient-Reported Outcome (PRO) studies. International Society for Pharmacoeconomics and Outcomes Research 22nd Annual International Meeting; Boston, MA: May (20-24), 2017.

Tutuncu A, Egan S, Evans CJ, Ryan A, Cala MLKhurana L, Dallabrida SM.  What is being measured in Patient-Reported Outcome (PRO) measures?  Symptom questions may often reveal impact answers.  International Society for Pharmacoeconomics and Outcomes Research 22nd Annual International Meeting; Boston, MA: May (20-24), 2017.

Evans CJ, Serrano D, Witherspoon B, Khurana L, Dallabrida SM.  Are patients’ responses to five point verbal descriptor scales and visual analogue scales replicate measures? An experimental manipulation.  International Society for Pharmacoeconomics and Outcomes Research 22nd Annual International Meeting; Boston, MA: May (20-24), 2017.

Evans CJ, Serrano D, Witherspoon B, Khurana L, Dallabrida SM.  Pain assessment: A myriad of techniques to measure pain severity.  Does it matter which one is used?  International Society for Pharmacoeconomics and Outcomes Research 22nd Annual International Meeting; Boston, MA: May (20-24), 2017.

Kelleher C, Chapple C, Johnson N, Payne C, Homma Y, Hakimi Z, Siddiqui E, Kopp Z, Evans C. Development of an overactive bladder assessment tool: A potential alternative to the bladder diary. 32nd Annual EAU Congress; London: March (24-28), 2017.

Serrano D, Gauthier M, Harrington M, Acevedo L. Psychometric validation of the Itch Reported Outcome (ItchRO™) Observer assessment in pediatric patients with Alagille syndrome or progressive familial intrahepatic cholestasis. 67th Annual Meeting of the American Association for the Study of Liver Diseases: The Liver Meeting 2016; Boston, MA: November (11-15), 2016.

Curry C, Gauthier M, Egan S, Ryan A, Graham C, Witherspoon B, Evans C, DeBusk K. Development of Novel Clinical Outcome Assessments (COAs) for Children and Caregivers to Assess Atopic Dermatitis Signs and Symptoms. International Society for Quality of Life Research 23nd Annual Conference; Copenhagen, Denmark: October 20, 2016.

Curry C, Gauthier M, Egan S, Ryan A, Graham C, Witherspoon B, Evans C, DeBusk K. A Comparison of Atopic Dermatitis Signs and Symptoms by Age and Reporter. 25th European Academy of Dermatology and Venereology Annual Congress; Vienna, Austria: September 28-October 2, 2016.

Chapple C, Kelleher CJ, Evans C, Kopp Z, Johnson N, Hakimi Z, Siddiqui E. Comprehensive Bladder Assessment Tool: Instrument Development. 46th Annual International Incontinence Society Conference; Tokyo, Japan: September (13-15), 2016.

Peterson J, Gauthier M, Piault E, DeBusk K, Buzaglo J, Eng-Wong J, Glazer J, Green M, Johnson J, Spears P, Evans C. Importance of the patient voice in drug development: Early-stage breast cancer and measurement gaps concerning the treatment experience. San Antonio Breast Cancer Symposium: December 8-12, 2015.

Cala M, Witherspoon B, Evans C, Dallabrida S. Where is Your Abdomen? Patient-Reported Abdomen Locations and Implications for Patient-Reported Outcome Assessments. International Society for Pharmacoeconomics and Outcomes Research 18th Annual European Congress; Milan, Italy: November (7-11), 2015.

Burgess, SM, Gauthier M, Cala ML. Comparison of patient-reported outcomes requirements in medical guidelines for pain, migraine, rheumatoid arthritis, and systemic lupus erythematosus: Europe vs United States. International Society for Pharmacoeconomics and Outcomes Research 18th Annual European Congress; Milan, Italy: November (7-11), 2015.

Curry C, Gauthier M, Cala ML, Egan S, Witherspoon B, Evans C, Fitzgerald K. Development of Novel Patient-Reported Outcomes (PRO) Instruments to Assess Atopic Dermatitis Signs, Symptoms and Impacts. International Society for Quality of Life Research 22nd Annual Conference; Vancouver, BC: October 24, 2015.

Chapple C, Kelleher CJ, Evans C, Kopp Z, Johnson N, Hakimi Z, Siddiqui E. Assessing outcomes in OAB: What is the way of the future? 45th Annual International Incontinence Society Conference; Montreal, CA: October (6-9), 2015.

Witherspoon B, Misra Burgess S, Miskala P. Developments and communication since the issuance of FDA’s Guidance to Industry on Patient-Reported Outcomes: then and now. International Society for Pharmacoeconomics and Outcomes Research 20th Annual International Meeting; Philadelphia, PA: May (16-20), 2015.

Abetz-Webb L, Kennedy C, Hepburn B, Gauthier M, Johnson N, Menendorp S, Dorenbaum A, Shneider B, Kamath B. The Burden of pruritus on patients with Alagille syndrome: results from a qualitative study with pediatric patients and their caregivers. 65th Annual Meeting of the American Association for the Study of Liver Diseases; The Liver Meeting: November, 2014.

Arbuckle R, Witherspoon B, Carson R. Treatment expectations and drivers of treatment satisfaction among chronic constipation (CC) and irritable bowel syndrome with constipation (IBS-C) patients. American College of Gastroenterology Annual Scientific Meeting; Philadelphia, PA: October (17-22), 2014.

Holloway L, Arbuckle R, Carson R, Dennee-Sommers B, Abetz, L. Agreement between child and parent symptom diary responses in chronic constipation (CC) and irritable bowel syndrome with constipation (IBS-C): Implications for the measurement of symptoms in young children. International Society for Pharmacoeconomics and Outcomes Research European Congress: Dublin, Ireland: November (2-6), 2013.

Arbuckle R, Holloway L, Carson R, Dennee-Sommers B, Abetz L. The value of pilot testing PRO symptom diaries prior to conducting cognitive debriefing interviews in children/adolescents: qualitative and quantitative insights. International Society for Pharmacoeconomics and Outcomes Research European Congress; Dublin, Ireland: November (2-6),2013.

Hwang S, Evans C, Rothman M, Hao Y. Health-related quality of life in metastatic castration-resistant prostate cancer. International Society for Pharmacoeconomics and Outcomes Research; New Orleans, LA: May (18-22), 2013.

Hao Y, Evans C. A critical review of EMA labeling claims in oncology: 2006-2012. International Society for Pharmacoeconomics and Outcomes Research; New Orleans, LA: May (18-22), 2013.

Klemm M, Haines K. Findings from the Rehabilitation Research and Training Center on Vocational Rehabilitation. TASH Annual Conference; Atlanta, GA: December, 2011.

Klemm M, Haines K. Strategies to minimize the effects of reporting errors through strategic web-survey design in program evaluation. American Evaluation Association Annual Conference; Anaheim, CA: November, 2011.

Klemm M. Evaluating the effectiveness of a professional development Program on student outcomes based on educator perceptions. American Evaluation Association Annual Conference; Anaheim, CA: November, 2011.

Yaworsky A, Daniels S, Fitzgerald K, Galipeau N, Kornstein A, Evans C, Misra-Burgess S. Content assessment of the facial line outcomes (FLO-11) questionnaire. International Society for Quality of Life Research 18th Annual Conference; Denver, CO: October (26-29), 2011.

Dennee-Sommers B, Galipeau N, Fitzgerald K, Evans C, Daniels S, Burgess SM. Gap analysis of patient-reported outcome measures for alopecia. International Society for Pharmacoeconomics and Outcomes Research 16th Annual Meeting; Baltimore, MD: May (21-25), 2011.

Carson RT, Lewis B, Shiff S, Johnston JM, Dennee-Sommers B, Lasch K, Hwang S, Marquis M. IBS-C patient symptom reports: Analysis of exploratory open-ended questions. International Society for Pharmacoeconomics and Outcomes Research 16th Annual Meeting; Baltimore, MD: May (21-25), 2011.

Lambe J, Acquadro C, Conway K, Ng-Mak D, Norquist J, Healy C, Nelsen L, Fitzgerald K, Evans C, Banderas B. Translatability assessment of the post-migraine questionnaire. International Society for Pharmacoeconomics and Outcomes Research 16th Annual Meeting; Baltimore, MD: May (21-25), 2011.

Johansen KL, Finkelstein FO, Revicki DA, Evans C, Wan S, Gitlin M, Agodoa IL. Systematic Review of the Impact of Erythropoiesis Stimulating Agents on Fatigue in Dialysis Patients. National Kidney Foundation 2011 Spring Clinical Meetings; Las Vegas, NV: April (26-30), 2011.

Evans C, Fitzgerald K, Varon S, Bloudek L, Banderas B, Blumenfeld A. Development of a new patient-reported outcome measure in chronic migraine. American Academy of Neurology 63rd Annual Meeting; Honolulu, HI, USA: April (9-16), 2011.

Vo P, Chambers J, Evans C, Nothaft W, Duan R, Marx S. Systematic literature review on the burden of illness in osteoarthritis. Osteoarthritis Research Society International Meeting; Brussels, Belgium: September (23-26), 2010.

Ng-Mak DS, Fitzgerald K, Norquist J, Evans C, Nelson LM, Banderas B, Healy C, Ho T, Bigal M. Post-Migraine Questionnaire (PMQ): a new instrument to assess symptoms and symptom impacts from patients’ perspective. 52nd Annual Scientific Meeting of the American Headache Society; Los Angeles, CA: June (24-27), 2010.

Vo P, Chambers J, Evans C, Dennee-Sommers B, Wolfram N, Marx S. Systematic literature review on the burden of illness in fibromyalgia. American Pain Society; Baltimore, MD: May (6-8), 2010.

Vo P, Chambers J, Evans C, Dennee-Sommers B, Wolfram N, Marx S. Systematic literature review on the burden of illness in painful diabetic peripheral neuropathy. American Pain Society; Baltimore, MD: May (6-8), 2010.

Silverman S, Sadosky A, Evans C, Yeh Y, Alvir J, Zlateva G. Assessing fibromyalgia severity. World Institute of Pain 2009, 5th World Congress; New York, NY: March (13-16), 2009.

Jansen JP, Evans CJ, Guyot M, Masaquel C, Mayne TJ.  The impact of epoetin alfa on symptoms of anemia: a Bayesian meta-analysis of clinical trials. American Society of Nephrology; San Francisco, CA: October 31- November 5, 2007.

Brubaker L, Kopp Z, Piault E, Trocio J, Evans C, Fitzgerald K, Wong A. Development of a self-assessment goal achievement (SAGA) questionnaire in urinary disorders. 37th Annual Meeting of the International Continence Society; Rotterdam, the Netherlands: August (20-24), 2007.

Merkle E, Evans C, Feldman R. Patient satisfaction with a single pill treatment of hypertension and dyslipidemia. 8th Scientific forum on Quality of Care and Outcomes Research in Cardiovascular Disease and Stroke Conference; Washington, D.C., MD: May (9-11), 2007.

Nelson WW, Schein JR, Gargiulo K, Evans CJ.  Nursing times associated with intravenous patient-controlled analgesia (IV PCA) and fentanyl iontophoretic transdermal system (ITS): a comparison of estimates from 2 Delphi panels. 60th Annual Post Graduate Assembly in Anesthesiology; New York, NY, USA: December (8-12), 2006.

Kopp Z, Abrams P, Piault E, Evans C, Espindle D, Atkinson M, Brubaker L, Jumadilova Z. Patient satisfaction in studies of overactive bladder: A generic questionnaire versus a disease specific questionnaire. International Continence Society International Meeting; Christchurch, New Zealand: November 27 – December 1, 2006.

Jansen J, Evans C. The value and acceptability of a Bayesian framework for drug reimbursement and market access decision making. International Society for Pharmacoeconomics and Outcomes Research 11th Annual Meeting; Philadelphia, PA, USA: May (20-24), 2006.

Evans C, Piault E, Espindle D, Kopp Z, Brubaker L, Abrams P. Generic vs disease specific satisfaction measures: selecting a satisfaction measure for overactive bladder studies. Philadelphia, PA, USA; International Society for Pharmacoeconomics and Outcomes Research 11th Annual Meeting: May (20-24), 2006.

Coombs J, Evans C. Special interest group presentation on a responder index in low back pain. OMERACT; Malta: May (10-14), 2006.

Evans C, Katz N, Simon L, Bombadier C, West C, Robbins J, Copley-Merriman C, Coombs J. Development and preliminary validation of a responder index for patients with chronic low back pain. American Pain Society; San Antonio, TX, USA: May (3-6), 2006.

Piault E, Evans C, Marcucci G, Kopp Z, Brubaker L, Abrams P. Patient satisfaction: psychometric validation of the OAB-S, an overactive bladder treatment satisfaction questionnaire. International Society for Pharmacoeconomics and Outcomes Research 8th Annual European Congress; Firenze, Italy: November (6-8), 2005.

Evans C, Horowicz-Mehler N, Crawford B, Mertzanis P, Pena B, Mayne T. Satisfaction with pain medication and intention to comply with treatment: a structural equation model in rheumatoid arthritis. International Society for Pharmacoeconomics and Outcomes Research 10th Annual International Meeting; Washington, D.C, MD, USA: May (15-18), 2005.

Horowicz-Mehler N, Evans CJ, Abetz L, Copley-Merriman K. The content validity of clinician derived patient reported outcome measures: the Roland Morris Disability Questionnaire. International Society for Pharmacoeconomics and Outcomes Research 10th Annual International Meeting; Washington, D.C. MD, USA: May (15-18), 2005.

Evans C, Crawford B, Mesrobian X, Tavakoli M. Estimating the indirect costs of medical interventions: limitations of current strategies and the development of an integrated approach. 5th International Conference on Strategic Issues in Health Care Management; St. Andrews, Scotland: September (2-4), 2004.

Crawford B, Evans C, Tavakoli M. Do patients really care about others? An exploration of the impact of utility scores. 5th International Conference on Strategic Issues in Health Care Management; St. Andrews, Scotland: September (2-4), 2004.

Crawford B, Evans C, Tavakoli M. Understanding utility: do patients understand what we are asking them? 5th International Conference on Strategic Issues in Health Care Management; St. Andrews, Scotland: September (2-4), 2004.

Evans C. The search for the holy grail: establishing a valid methodology for measuring work productivity. International Society for Pharmacoeconomics and Outcomes Research Sixth Annual European Congress; Barcelona, Spain: November (9-11), 2003.

Feldman S, Evans C, Russell M. Treatment of psoriasis with conventional systemic agents is associated with high medical costs and frequent treatment failure. International Society for Pharmacoeconomics and Outcomes Research Sixth Annual European Congress; Barcelona, Spain: November (9-11), 2003.

Van Loon J, Crawford B, Monteban H, Evans C. How health care can benefit from changing the mindset: from cost and effectiveness to cost effectiveness. International Society for Pharmacoeconomics and Outcomes Research Sixth Annual European Congress; Barcelona, Spain: November (9-11), 2003.

Roberts H, Evans C, Sagrolikar A, Poulios N, Gomperts E. Development of an economic and outcomes model of hemophilia treatment in Latin America and South-East Asia. XIX Congress of the International Society of Thrombosis and Haemostasis; Birmingham, UK; July (12-18), 2003.

Evans C. Rationing in health care: can education make priority setting more efficient. 4th iHEA World Congress; San Francisco, CA, USA; June (15-18), 2003.

Crawford B, Evans C. Resource utilization estimates in economic evaluations: a comparison of economic data from a clinical trial to a cross-sectional database. 4th iHEA World Congress; San Francisco, CA, USA; June (15-18), 2003.

Evans C, Roberts HR, Sagrolikar A, Gomperts E. Hemophilia economic model of outcomes: Philippines case study. International Society for Pharmacoeconomics and Outcomes Research 8th Annual International Meeting; Crystal City, VA, USA: May (18-21), 2003.

Crawford B, Baron-Papillon F, Evans C, Horowitz-Mehler N. Economic and outcomes research in the real world: evaluation of its relevance. International Society for Pharmacoeconomics and Outcomes Research 8th Annual International Meeting; Crystal City, VA, USA: May (18-21), 2003.

Evans C. Hemophilia treatment in developing countries. World Federation of Hemophilia. 44th Annual Meeting of the American Society of Hematology; Philadelphia, PA, USA: December (6-10), 2002.

Crawford B, Gray C, Evans C, Piercy J, Arnould B. How to optimize communication of your results: achieving high impact communications. International Society for Pharmacoeconomics and Outcomes Research Fifth Annual European Congress; Rotterdam, the Netherlands: November (3-5), 2002.

Evans C. Criteria for reimbursement decisions. International Society for Pharmacoeconomics and Outcomes Research Fifth Annual European Congress: Rotterdam, the Netherlands: November (3-5), 2002.

Roberts H, Evans C, Gomperts E, Poulios N, Sagrolikar A. Development of an economic and outcomes model of hemophilia treatment in Latin America and South East Asia. International Society for Pharmacoeconomics and Outcomes Research Fifth Annual European Congress; Rotterdam, the Netherlands: November (3-5), 2002.

Evans C. Health economic education in allocation decisions: a pre-test post-test study. International Society for Pharmacoeconomics and Outcomes Research Fifth Annual European Congress; Rotterdam, the Netherlands: November (3-5), 2002.

Evans C, Mesrobian X, Crawford B. Benchmarks in economic evaluations: theoretical and practical shortcomings. Fourth Annual Workshop on Pharmaceutical Outcomes Research; Newport RI, USA: October (16-18), 2002.

Piercy J, Mesrobian X, Viala M, Evans C. Management of psoriasis in the UK primary care setting. 11th Congress of the European Academy of Dermatology and Venereology; Prague, Czech Republic: October (2-6), 2002.

Piercy J, Mesrobian X, Evans C, James P, Barker J. The burden of chronic plaque psoriasis (CPP) in the UK hospital sector. 11th Congress of the European Academy of Dermatology and Venereology; Prague, Czech Republic: October (2-6), 2002.

Piercy J, Mesrobian X, Evans C. Estimating the cost of moderate to severe chronic plaque psoriasis in the UK11th Congress of the European Academy of Dermatology and Venereology; Prague, Czech Republic: October (2-6), 2002.

Feldman S, Evans C. Systemic psoriasis treatment is costly and associated with a high likelihood of treatment failure. Academy 2000 Summer Meeting of the American Academy of Dermatology; New York, NY, USA: July 31-August 4, 2002.

Horowicz-Mehler N, Evans C, Crawford B, Mertzanis P, Pena B, Wong J, Mayne T. Structural equation modeling in a trial of rheumatoid arthritis patients: indicators of satisfaction with pain medication and intention to comply with treatment. Annual European Congress of Rheumatology; Stockholm, Sweden: June (12-15), 2002.

Evans C, Crawford B. The application of expert opinion in pharmacoeconomic studies. International Society for Pharmacoeconomics and Outcomes Research; Crystal City, VA: May (19-22), 2002.

Roberts H, Evans C. HEMO: Health Economic Model of Outcomes. XXV International Congress of the World Federation of Hemophilia; Seville, Spain: May (19-24), 2002.

Roberts H, Evans C, Gomperts E. Development of an economic and outcomes model of hemophilia treatment in Latin America and South East Asia. XXV International Congress of the World Federation of Hemophilia; Seville, Spain: May (19-2), 2002, and 29th World Congress of the International Society of Hematology; Seoul, Korea: August (24-28), 2002.

Trudeau E, Seignobos E, Evans C, Mertzanis P. Factors that influence patient satisfaction in colorectal cancer patients. American Society of Clinical Oncology (ASCO). 2002 Proceedings; Orlando, FL, USA: May (19-21), 2002.

Evans C, Crawford B, Mertzanis P, Tavakoli M. Interpreting endpoints in economic evaluations: analytic foundation and misleading conclusions. 5th International Conference in Strategic Issues in Health Care Management; St. Andrews, Scotland, UK: April (11-13), 2002.

Crawford B, Evans C, Tavakoli M. Theoretical models for utility: which model is better? 5th International Conference in Strategic Issues in Health Care Management; St. Andrews, Scotland, UK: April (11-13), 2002.

Feldman S, Piercy J, Vigliani G, Evans C. Development of an international model to measure the cost of care and cost effectiveness of treatments for psoriasis. 60th Annual Meeting of the American Academy of Dermatology; New Orleans, LA: February (22-27), 2002.

Crawford B, Evans C, Turner A, Karavali M. Disability, resource utilization, and work absences associated with osteoarthritis (OA) and rheumatoid arthritis (RA): an international database analysis.  International Society for Pharmacoeconomics and Outcomes Research; Cannes, France: November (11-13), 2001.

Marquis P, Evans C. Quality factors for health related quality of life assessment in clinical trials. 7th Annual National Health Outcomes Conference; Canberra, Australia: June (27-28), 2001.

Evans C, Crawford B, Miles A. Measurement strategies for productivity losses and work absences. International Society for Pharmacoeconomics and Outcomes Research: Antwerp, Belgium: November (5-7), 2000.

Baron F, Marquis P, Evans C, Crawford B. International comparison of pharmacoeconomic guidelines: consensus, divergence and practical implications. International Society for Pharmacoeconomics and Outcomes Research; Antwerp, Belgium: November (5-7), 2000. Value in Health 2000; 3 (5): 370.

Evans C, Crawford B, Hayes J, Cavallo F. Communication strategies for health outcomes studies. International Society for Pharmacoeconomics and Outcomes Research; Arlington, VA, USA: May (20-24), 2000.

Evans C, Crawford B, Dukes E. Technology assessment in the US: what do payers understand and what information do they want? ISPOR; Arlington, VA, USA: May (20-24), 2000.

Evans C, Kennedy L, Crawford B. The use of databases in health economics and outcomes research: an international perspective. 4th International Conference on Strategic Issues in Health Care Management; St Andrews, Scotland: March 30 – April 1, 2000.

Evans C, Kennedy L, Crawford B, Malek M. From guidelines to good practice: improving the quality of economic evaluations. 4th International Conference on Strategic Issues in Health Care Management; St Andrews, Scotland: March 30 – April 1, 2000.

Rovira J, Antonanzas F, Girod I, Arnould B, Crawford B, Evans C. The comparability and transferability of direct medical costs in international pharmacoeconomic studies. International Society for Pharmacoeconomics and Outcomes Research Second Annual European Conference; Edinburgh, Scotland: November 12, 1999.

Trudeau-Vanhems E, Marquis P, Evans C. Measurement of patient satisfaction with medical treatment. International Society for Pharmacoeconomics and Outcomes Research; Edinburgh, Scotland: November 12, 1999.

Evans C, Saal G, Crawford B. Structured decision making in pharmacoeconomic studies: a comparison and critique. International Society for Pharmacoeconomics and Outcomes Research; Edinburgh, Scotland: November 12, 1999.

Crawford B, Evans C, Benford M, Karavali M. The use of international, disease specific, cross-sectional databases for pharmacoeconomic research. Edinburgh, Scotland: November (11-12), 1999.

Marquis P, Evans C. Practical strategies in outcomes research to support new products. IRR; London, England: October 13, 1999.

Evans C, Crawford B. Data collection methods in economic evaluations: implications for study validity, evidence rankings and league tables. HESG; Aberdeen, Scotland: July (14-16), 1999.

Keresteci MA, Ungar W, Ryan N, Mendelson L, Tarlo S, Nadal JC, Rosano ME, Evans C. Development of a nasal comfort index for nasal sprays in adults with seasonal allergic rhinitis. International Society for Pharmacoeconomics and Outcomes Research Fourth Annual International Meeting; Crystal City, VA, USA: May (23-26), 1999.

Crawford B, Evans C. Data collection methods for resource utilization: choosing the right approach. International Society for Pharmacoeconomics and Outcomes Research Fourth Annual International Meeting; Crystal City, VA, USA: May (23-26), 1999.

Wilson DA, Gammans RE, Evans CJ. Cost of ischemic stroke treatment by functional status: a model comparing citicoline to standard care. International Society for Pharmacoeconomics and Outcomes Research Fourth Annual International Meeting; Crystal City, VA, USA: May (23-26), 1999.

Evans C, Dukes E, Bailey L, Crawford B. Pharmacoeconomic information in formulary decision making in the United States. International Society for Pharmacoeconomics and Outcomes Research Fourth Annual International Meeting; Crystal City, VA, USA: May (23-26), 1999.

Crawford B, Dukes E, Bailey L, Evans C. The role of quality of life information in managed care decision making. International Society for Pharmacoeconomics and Outcomes Research Fourth Annual International Meeting; Crystal City, VA, USA: May (23-26), 1999.

Henke CJ, Miller DP, Armitage GC, Eber RM, Genco RJ, Killoy WJ, Mellonig JT, Page RC, Polson AM, Ryder MI, Somerman MJ, Van Dyke TE, Wolff LF, Yukna RA, Evans CJ, Finkelman RD. Economic evaluation of a chlorhexidine chip for treating adult periodontitis. International and American Association for Dental Research; Vancouver, Canada: March (9-13), 1999.

Crawford B, Evans C. Self reported resource utilization data in pharmacoeconomic trials: their use and impact on study validity. International Society for Pharmacoeconomics and Outcomes Research Inaugural European Conference; Cologne, Germany: December (10-12), 1998.

Crawford B, Evans C. Designing an international piggyback study: providing the foundation. International Society for Pharmacoeconomics and Outcomes Research Inaugural European Conference; Cologne, Germany: December (10-12), 1998.

Crawford B, Evans C, Abetz L. The use of proxies to collect health care resources and quality of life data. International Society for Pharmacoeconomics and Outcomes Research Inaugural European Conference; Cologne, Germany: December (10-12), 1998.

Evans C, Crawford B. Direct medical costs: perspectives and techniques. DIA Economic Assessment in Clinical Trials; New Orleans, LA, USA: November (9-10), 1998.

Crawford B, Evans C. The use of patient self-reports to collect health care resource utilization. Third Annual Meeting of the International Society for Pharmacoeconomic and Outcomes Research; Philadelphia, PA, USA: May (27-29), 1998.

Lorber M, Evans C, Fastenau J, DiCesare J, Hall M on behalf of the US Simulect Group. An economic evaluation of Basiliximab (Simulect) for the prevention of acute cellular rejection in renal allograft recipients. American Society of Transplant Physicians; Chicago, IL, USA: May (9-13), 1998.

Evans C, Crawford B, Wilson D. Threats to validity in prospective economic evaluations. HESG: January, 1998.

Wilson D, Evans C, Fitzsimon C. International economic comparison of stroke treatment of citicoline to standard care. North American Stroke Meeting; Montreal, Canada: October (16-18), 1997.

Evans CJ, Cascade EF. Utilizing pharmacoeconomic modeling to support oncology research, marketing and disease management strategies. Managed Oncology Care: April, 1997.

Evans C. The use of delphi, modified delphi and expert panels in pharmacoeconomic studies: practical applications and methodological shortcomings. HESG: January, 1997.

Evans C. The development of health care delivery efficiency indexes: a preliminary investigation. Strategic Issues in Health Care Management: March, 1994.

Evans C. The impact of World Bank and IMF structural adjustment loans on health conditions, health care delivery and health status in sub-saharan Africa. Strategic Issues in Health Care Management: March, 1994.

Evans C, Phillips J. Alternative methods of health care delivery in developing countries: three case studies. HESG: January, 1993.

Book Chapters

Kopp ZS, Evans CJ, Brubaker LP. PRO questionnaires to screen and measure satisfaction, expectations and goal achievement. In Cardozo and D Staskin (eds.) Textbook of Female Urology and Urogynecology (Third Edition). London, Informa Healthcare, 2010.

Evans C, Horowicz-Mehler N. Pharmacoeconomics in pain research. In Harriet Wittink and Daniel Carr (eds.) Pain Management: Evidence, Outcomes and Quality of Life. New York, Elsevier, 2008.

Evans C. The pharmaceutical industry and productivity research. In R. Kessler, P. Stang (eds.). Health and Work Productivity: Making the Business Case for Quality Health Care. Chicago: University of Chicago Press, 2006.

Evans C, Kennedy L, Crawford B, Malek M. From guidelines to good practice: improving the quality of economic evaluations. In M Tavakoli, H.T.O Davies and M. Malek (eds.) Health Policy and Economics: Strategic Issues in Health Care Management. Ashgate Publishing Ltd, 2001.

Evans C, Kennedy L, Crawford B. The use of databases in health economics and outcomes research: an international perspective. In M Tavakoli, H.T.O Davies and M. Malek (eds.) Health Policy and Economics: Strategic Issues in Health Care Management. Ashgate Publishing Ltd, 2001.

Malek M, Rasquinha J, Vacani P, Evans C. Health care delivery efficiency indexes – the search for the holy grail. In M. Malek et al. (eds.) Strategic Issues in Health Care Management. New York: John Wiley and Sons, 2001.

White Paper

Andrae DA, Foster B. Measuring and Scoring Latent States: History, Practice, and Implications for Medical Research. Boston, MA: Endpoint Outcomes White paper; 2019.  Measuring and Scoring Latent States

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RESEARCH

Our qualitative research on rating scales.
Development of Pediatric Illustrations for Concept Elicitation Interviews

In 2018, researchers at Endpoint Outcomes embarked on an exercise to develop illustrations to assist pediatric research participants in communicating their disease experience to our interviewers.  A list of concepts commonly found in pediatric diseases was developed based on a review of generic pediatric health-related quality of life measures.  Draft illustrations were initially developed by a professional illustrator to reflect the core concepts.  The draft illustrations were then reviewed by staff at Endpoint Outcomes to ensure they reflect the relevant concepts and illustrations were subsequently altered if necessary. The illustrations have been developed to be gender and ethnicity/race neutral and to focus on disease deficits.  Currently, the illustrations are being pilot tested in two pediatric studies in rare diseases. A formal evaluation of the content validity of the measures is planned for later in the year. For additional information on this work please contact Shayna Egan: Shayna.egan@endpointoutcomes.com

Qualitative Research to Support the Selection of Appropriate Rating Scales and Response Options

During Q4 2013 through Q2 2014 Endpoint Outcomes embarked on a large study to examine the selection of rating scales and response options for patient reported outcome (PRO) measures from the patient’s perspective.  This research, which was a mix of closed-ended exercises supplemented with qualitative interviews, sought to broaden our understanding of the best scales and response options to use in the development or PRO measures.  This work was conducted in 400 patients representing four chronic conditions.  This research examined a variety of topics related to measurement, including but not limited to:

  • Patient preference for visual analogue scale (VAS) – horizontal (VAS-H), VAS-vertical (VAS-V), numeric rating scale (NRS), NRS-box plot and verbal descriptor scale (VDS)
  • Level of agreement between VAS-V, NRS, NRS-box plot and VDS
  • Whether VDSs have interval properties or are purely categorical
  • The appropriate number of categories on a VDS (none, mild, moderate and severe vs. none, very mild, moderate, severe, and very severe)
  • Appropriate descriptors for VDSs
  • Preference for 24 hour recall instructions
  • Patient memory retrieval process for symptoms assessments
    • For example, when patients are asked to recall the severity of a symptom do they recall the sensation of the symptom (e.g., pain intensity) or do they recall the impact of the symptom on functioning (e.g., because of pain they could not do physical activities)

We have presented select results to date, including:

  • Proximal versus distal impacts of disease: drivers of bothersomeness ratings in patient-reported outcomes studies.
  • What is being measured in patient-reported outcome measures? Symptom questions may often reveal impact answers.
  • Are patients’ responses to five point verbal descriptor scales and visual analogue scales replicate measures? An experimental manipulation.
  • Pain assessment: a myriad of techniques to measure pain severity – does it matter which one is used?
  • Where is your abdomen? Patient-reported abdomen locations and implications for patient-reported outcome assessments.