REMOTE DELIVERY OF A STANDARDIZED EDUCATIONAL PROTOCOL FOR SELF-MANAGEMENT OF CHRONIC SWELLING OF THE LOWER LIMBS IN INDIVIDUALS WITH LIMITED MOBILITY by Becky Lee Faett BSN, Waynesburg College, 2000 MBA, Waynesburg College, 2002 MSN, Waynesburg College, 2006 Submitted to the Graduate Faculty of School of Health and Rehabilitation Science in partial fulfillment of the requirements for the degree of Doctor of Philosophy University of Pittsburgh 2012 UNIVERSITY OF PITTSBURGH SCHOOL OF HEALTH AND REHABILITATION SCIENCES The dissertation was presented by Becky Lee Faett It was defended on August 29, 2012 and approved by Mary Jo Geyer, PT, PhD, C.Ped, FACCWS, CLT-LANA, Department of Rehabilitation Science and Technology, School of Health and Rehabilitation Sciences, University of Pittsburgh Ray Burdett PhD, PT, CPed, CO, Department of Rehabilitation Science and Technology, School of Health and Rehabilitation Sciences, University of Pittsburgh Leslie A. Hoffman PhD, RN, FAAN, Department of Acute and Tertiary Care, School of Nursing, University of Pittsburgh Patricia Karg MSE, Department of Rehabilitation Science and Technology, School of Health and Rehabilitation Sciences, University of Pittsburgh Dissertation Advisor: David M. Brienza, PhD, Department of Rehabilitation and Technology, School of Health and Rehabilitation Sciences, University of Pittsburgh ii Copyright © by Becky Lee Faett 2012 iii REMOTE DELIVERY OF A STANDARDIZED EDUCATIONAL PROTOCOL FOR SELF-MANAGEMENT OF CHRONIC SWELLING OF THE LOWER LIMBS IN INDIVIDUALS WITH LIMITED MOBILITY Becky L Faett, PhD University of Pittsburgh, 2012 The purpose of this study was to develop and evaluate the remote delivery of a standardized self- management protocol for chronic swelling of the lower limbs, termed Telerehabilitation to Empower You to Manage and Prevent Swelling (TR-PUMPS). This protocol was a component of a clinical trial designed to evaluate an in-home self-management program for chronic lower limb swelling in people with limited mobility that utilized TR to provide real time face-to face interactive educational and assessment sessions over a six week period. Developed as a series of videos, the protocol was designed to encompass 10 learning goals for self-management of chronic swelling/lymphedema. Content validity was determined by eight certified lymphedema therapists. The mean score for the videos was 4.5 ± 0.35 (Likert scale of 5 = strongly agree to 1 = strongly disagree). The readability level of 5th grade and superior suitability rating using the Suitability Assessment of Materials indicated materials were appropriate for various levels of health literacy in the study population. TR-PUMPS was implemented utilizing the Versatile and Integrated System for Telerehabilitation (VISYTER) software platform, a secure system that provides the ability for real-time teleconferencing. Evaluation of the subjects’ post intervention Competency in Self Care and Self-Management (CSCSM) of their chronic swelling resulted in a mean score of 94% + 4%. Inter-rater reliability of the CSCSM was high. The Intraclass Correlation Coefficient (ICC) for iv single measures was .958 with a 95% confidence interval of .913 - .980 (p = .000). ICC of average measures was .979 with a 95% confidence interval of .955 - .990 (p = .000). Self- identified performance goals measured by the Canadian Occupation Performance Measurement showed significant improvement post intervention (p = .008) and exceeded the minimal importance difference. There was no significant change in the subjects’ self-efficacy in management of their chronic swelling scores (p = .065). The subjects’ perceived usability of the remote delivery of TR-PUMPS was high with a mean score of 6.4 + 0.65 (Likert scale of 1 = disagree to 7 = agree). These results support TR-PUMPS as a viable method for providing a home-based self-management program for chronic swelling. v TABLE OF CONTENTS PREFACE ................................................................................................................................. XIII 1.0 INTRODUCTION ........................................................................................................ 1 1.1 OBJECTIVE ........................................................................................................ 2 1.2 SPECIFIC AIMS ................................................................................................. 3 1.2.1 Primary Aims ................................................................................................... 3 1.2.2 Secondary Aims ............................................................................................... 5 2.0 BACKGROUND .......................................................................................................... 6 2.1 LYMPHEDEMA .................................................................................................. 6 2.1.1 Lymphatic system function ............................................................................. 6 2.1.2 Development of lymphedema ......................................................................... 8 2.1.2.1 Etiology of lymphedema ..................................................................... 10 2.1.2.2 Prevalence of lymphedema ................................................................. 10 2.1.2.3 Complete decongestive therapy ......................................................... 11 2.1.2.4 Pneumatic compression therapy ........................................................ 12 2.1.3 Chronic venous insufficiency ........................................................................ 13 2.2 IMOBILITY AND CHRONIC SWELLING/LYMPHEDEMA ................... 16 2.3 TELEREHABILITATION ............................................................................... 19 2.3.1 Telerehabilitation usability ........................................................................... 21 2.3.2 Clinical effectiveness of telerehabilitation ................................................... 22 2.3.3 Cost effectiveness of telerehablitation .......................................................... 24 vi 2.3.4 Patient satisfaction with telerehabilitation .................................................. 25 2.4 SELF-MANAGEMENT OF CHRONIC CONDITIONS .............................. 27 2.5 HEALTH LITERACY ...................................................................................... 32 3.0 DEVEOPMENT OF THE SELF-MANAGEMENT EDUCATION PROTOCOL… ............................................................................................................................ 39 3.1 METHOD ........................................................................................................... 39 3.1.1 Content Development .................................................................................... 39 3.1.2 Readability ..................................................................................................... 40 3.1.3 Video Development ........................................................................................ 41 3.1.4 Educational Booklet Development ............................................................... 42 3.2 RESULTS ........................................................................................................... 43 4.0 EVALUATION OF SELF-MANAGEMENT EDUCATIONAL PROTOCOL ... 44 4.1 METHOD ........................................................................................................... 44 4.1.1 Design .............................................................................................................. 44 4.1.2 Sample Population ......................................................................................... 44 4.1.2.1 Inclusion criteria ................................................................................. 44 4.1.2.2 Exclusion criteria ................................................................................ 45 4.1.3 Recruitment Protocol .................................................................................... 45 4.1.4 Screening Protocol ......................................................................................... 46 4.1.5 Implementation of Educational Protocol by TR ......................................... 49 4.1.6 Assessment protocol ...................................................................................... 52 4.1.6.1 Brief Test for Functional Health Literacy in Adults (Brief- TOFHLA) ........................................................................................................... 52 vii 4.1.6.2 Information Technology (IT) Familiarity Questionnaire................ 54 4.1.6.3 Self-Efficacy for Managing Chronic Disease 6-Item Scale .............. 54 4.1.6.4 Canadian Occupational Performance Measurement (COPM) ...... 54 4.1.6.5 Knowledge Test for Prevention and Care of Chronic Swelling ...... 56 4.1.6.6 Competence in Self-Care & Self-Management (CSCSM) ............... 56 4.1.6.7 Telehealth Usability Questionnaire (TUQ) ....................................... 57 4.1.6.8 Self-Reported, Self-Management Behaviors ..................................... 57 4.1.7 Data Collection ............................................................................................... 60 4.1.8 Sample Size ..................................................................................................... 62 4.1.9 Statistical Analysis ......................................................................................... 62 4.2 RESULTS ..........................................................................................................