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Quality of Life in Pediatric Patients with Intestinal Failure on Home Parenteral Nutrition

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Quality of Life in Pediatric Patients with Intestinal Failure on Home Parenteral Nutrition Quality of Life in Pediatric Patients with Intestinal Failure on Home Parenteral Nutrition by Megan Nicole Carricato A thesis submitted in conformity with the requirements for the degree of Master of Science (Clinical Epidemiology) Graduate Department of Health Policy, Management and Evaluation University of Toronto © Copyright by Megan Nicole Carricato 2010 Abstract Quality of Life in Pediatric Patients with Intestinal Failure on Home Parenteral Nutrition Megan Nicole Carricato Master of Science (Clinical Epidemiology) Graduate Department of Health Policy, Management and Evaluation University of Toronto 2010 Introduction: Medical advances have resulted in reduced mortality of pediatric patients with Intestinal Failure. Consequently, more patients go home on parenteral nutrition (PN) for extended durations. This time-consuming and complicated therapy necessitates persistent vigilance in monitoring and response to potential life-threatening side effects. These issues may impact quality of life (QOL) for patients, caregivers and families. Methods: This observational, cross-sectional, mixed-methods analysis of multidimensional QOL used a quantitative battery assessment and a qualitative focus group. Questionnaire results were compared to published norms, published small bowel transplant (SBTx), and institutional SBTx patients. Results: Home PN proxy assessments scored children lower than published norms but similar to SBTx. The child self-reports were similar to both normative and SBTx populations, except lower general and overall health. Generic questionnaires did not capture disease-specific issues. Conclusion: QOL is compromised in children on home PN and caregivers compared to norms but is similar to SBTx. ii Acknowledgements I would like to thank my husband, Jonathan, for all of his patience and understanding throughout these past two years. I consider myself very lucky to have a wonderful family that has stood by me through many years of school and through all of my endeavors in life. To my advisor, Dr. Paul Wales, for his guidance, support and direction. It was a great pleasure to work with someone who was always enthusiastic about this research, understanding about unexpected life events and extremely supportive at every step. To my committee members, Dr. Darcy Fehlings, Dr. Paul Pencharz and Dr. Stacey Pollock Bar- Ziv, for your understanding, assistance, support and knowledge. It was an honour to work with each of you. iii Table of Contents Abstract ...................................................................................................................................... ii Acknowledgements ................................................................................................................... iii Table of Contents ...................................................................................................................... iv List of Tables ........................................................................................................................... vii List of Figures ......................................................................................................................... viii List of Appendices..................................................................................................................... ix List of Abbreviations .................................................................................................................. x Chapter 1 Introduction ................................................................................................................ 1 Chapter 2 Literature Review ....................................................................................................... 2 2.1 Intestinal Failure ............................................................................................................. 2 2.1.1 INTESTINAL ADAPTATION............................................................................ 2 2.2 Parenteral Nutrition ......................................................................................................... 3 2.2.1 HOME PARENTERAL NUTRITION................................................................. 3 2.2.2 COMPLICATIONS OF LONG-TERM PARENTERAL NUTRITION ............... 4 2.3 Small Bowel Transplantation .......................................................................................... 4 2.3.1 SMALL BOWEL TRANSPLANTATION OVERVIEW ..................................... 4 2.3.2 CARING FOR THE PEDIATRIC SMALL BOWEL TRANSPLANT PATIENT AT HOME .......................................................................................................... 5 2.3.3 COMPLICATIONS OF SMALL BOWEL TRANSPLANTATION .................... 5 2.3.4 ECONOMICS OF SMALL BOWEL TRANSPLANT AND HOME PARENTERAL NUTRITION ............................................................................. 6 2.4 Quality of Life ................................................................................................................ 6 2.4.1 CONCEPTUALIZING QUALITY OF LIFE ....................................................... 6 2.4.2 HEALTH-RELATED QUALITY OF LIFE......................................................... 7 2.5 Measurement of Quality of Life ...................................................................................... 8 2.5.1 QUANTITATIVE ASSESSMENT OF QUALITY OF LIFE ............................... 8 2.5.2 QUALITATIVE ASSESSMENT OF QUALITY OF LIFE ................................. 9 2.6 Questionnaires for Quality of Life Assessment.............................................................. 10 2.6.1 DISEASE-SPECIFIC VERSUS GENERIC QUALITY OF LIFE TOOLS ........ 10 2.6.2 PEDIATRIC QUESTIONNAIRES AND PARENT PROXY ASSESSMENT ... 10 2.6.3 CONSIDERATIONS IN QUALITY OF LIFE INTERPRETATION ................. 12 2.7 Quality Of Life in Intestinal Failure: Home Parenteral Nutrition and Small Bowel Transplant ..................................................................................................................... 12 2.7.1 QUALITY OF LIFE IN HOME PARENTERAL NUTRITION......................... 13 2.7.2 QUALITY OF LIFE IN SMALL BOWEL TRANSPLANTATION .................. 18 Chapter 3 Rationale, Aims, Research Question, Hypotheses and Objectives ............................. 25 3.1 Study Rationale............................................................................................................. 25 3.2 Aims ............................................................................................................................. 26 3.3 Research Question ........................................................................................................ 26 3.4 Hypotheses ................................................................................................................... 26 3.5 Objectives ..................................................................................................................... 27 Chapter 4 Methodology ............................................................................................................ 28 4.1 Research Design ........................................................................................................... 28 4.1.1 SETTING .......................................................................................................... 28 4.1.2 DESCRIPTION OF THE POPULATION ......................................................... 28 iv 4.1.3 ELIGIBILITY CRITERIA ................................................................................ 29 4.1.4 POTENTIAL RESEARCH SUBJECTS ............................................................ 30 4.1.5 PHASE 1: QUANTITATIVE COMPONENT (SURVEY ADMINISTRATION). 30 4.1.6 PHASE 2: QUALITATIVE COMPONENT (FOCUS GROUPS) ...................... 31 4.2 Main Outcome Measures .............................................................................................. 32 4.2.1 QUANTITATIVE OUTCOME MEASURES .................................................... 32 4.2.2 QUALITATIVE OUTCOME MEASURES ...................................................... 60 4.3 Data Collection Forms .................................................................................................. 61 4.4 Statistical Analysis ........................................................................................................ 62 4.4.1 SUMMARY STATISTICS ............................................................................... 62 4.4.2 PRIMARY ANALYSIS .................................................................................... 62 4.4.3 SECONDARY ANALYSIS .............................................................................. 64 4.5 Sample Size .................................................................................................................. 65 Chapter 5 Results ..................................................................................................................... 66 5.1 Participants ................................................................................................................... 66 5.2 Participant Demographic and Clinical Data ................................................................... 67 5.3 Primary Quantitative Analysis ...................................................................................... 72 5.3.1 COMPARISON OF GENERIC QOL SURVEY RESULTS OF HOME PN SAMPLE TO NORMATIVE DATA ................................................................. 73 5.3.2 COMPARISON OF THE HOME PN GENERIC QOL SURVEY RESULTS
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