PCQLI



Health-related quality of life (HRQOL) refers to the perception of the impact of a specific illness, medical therapy, or health services policy on a person’s ability to participate and find satisfaction in life’s physical, psychological, and social experiences. The Pediatric Cardiac Quality of Life Inventory (PCQLI) is a disease-specific HRQOL instrument for children (8-12 years of age) and adolescents (13-18 years of age) with congenital or acquired heart disease (HD). This inventory was designed to improve patient-centered medical treatment and outcome. The PCQLI forms include both self-respondent and parent/proxy reporting. The PCQLI was developed at the Children's Hospital of Philadelphia and tested in a 19 center multi-national, multi-site validation study in the United States and England to test reliability, validity, generalizability, and responsiveness of the instrument.

The PCQLI is intended for use in both clinical and research settings. Listed below are a few of the diagnostic, evaluative, and prognostic applications of this inventory:

Clinical


  • Clinical problems related to disease state, physical symptoms, and psychosocial status
  • Monitor changes over time in Quality of Life
  • Cross-sectional and prospective research studies utilizing Health Related Quality of Life as an outcome
  • Prioritizing problems based partially on patient and/or parent preference

Research


  • Research Cross-sectional and prospective studies of HRQOL
  • Evaluating differences in clinically important subpopulations
  • Determining treatment protocol efficacy
  • Evaluating differences in therapeutic regimens
  • Identify morbidity factors associated with Health Related Quality of Life

Publications



Peer Reviewed Manuscripts

  • Marino BS, Shera D, Wernovsky G, Tomlinson RS, Aguirre A, Gallagher M, Lee A, Cho C, Stern W, Davis L, Tong E, Teitel D, Mussatto K, Ghanayem N, Gleason, M, Gaynor JW, Wray J, Helfaer MA, Shea JA. The development of the Pediatric Cardiac Quality of Life Inventory: a quality of life measure for children and adolescents with heart disease.  Quality of Life Research 2008; 17:613-626.

  • Marino BS, Tomlinson RS, Drotar D, Claybon ES, Aguirre A, Ittenbach R, Welkom JS, Helfaer MA, Wernovsky G, Shea JA. Quality-of-life concerns differ among patients, parents, and medical providers in children and adolescents with congenital and acquired heart disease. Pediatrics 2009; 123(4):e708-15.
  • Marino BS, Tomlinson RS, Wernovsky G, Drotar D, Newburger JW, Mahony L, Mussatto K, Tong E, Cohen M, Andersen C, Shera D, Khoury P, Wray J, Gaynor WJ, Helfaer MA, Kazak Aisha JA.  Evaluation of Health-related Quality of Life in Children and Adolescents with Congenital or Acquired Heart Disease:  Validation of the Pediatric Cardiac Quality of Life Inventory.  Pediatrics 2010; 126:1-11.
  • Marino BS, Uzark K, Ittenbach I, Drotar D. Evaluation of Quality of Life in Children with Heart Disease. Progress in Ped Cardiology 2010; 29:131-138.
  • Marino BS, Drotar D, Cassedy A, Davis R, Tomlinson RS, Mellion K, Mussatto K, Mahony L, Newburger JW, Tong E, Cohen MI, Helfaer MA, Kazak AE, Wray J, Wernovsky G, Shea JA, Ittenbach R.  External Validity of the Pediatric Cardiac Quality of Life Inventory.  Quality of Life Research 2011; 20(2):205-14
  • Wray J, Brown K, Rodney F, Marino BS. Medical test results don’t tell the whole story: health-related quality of life offers a patient perspective on outcomes. WJPCHS 2011; 2(4):566-575
  • Wray J, Franklin R, Brown K, Blyth J, Marino BS.  Linguistic validation of a disease-specific quality of life measure for children and teenagers with cardiac disease. Cardiology in the Young 2012; 22(1):13-17.
  • Wray J, Brown K, Franklin R, Cassedy A, Marino BS. Testing the Pediatric Cardiac Quality of Life Inventory in the United Kingdom. Acta Paediatrica (In Press)
  • Czosek R, Bonney WJ, Cassedy A, Mah DY, Tanel RE, Imundo JR, Singh AK, Cohen MI, Miyake CY, Fawley K, Marino BS. Impact of cardiac devices on the quality of life in pediatric patients. Circ Arrhythm Electrophysiol 2012 (In Press)

 Abstracts & Presentations

  • Marino BS, Wernovsky G, Shea J, Aguirre A, Helfaer M.  Developing a research tool to assess quality of life in children and adolescents with heart disease: preliminary data. Cardiol Young 2001; 11[suppl 1]:32. (International presentation at the 3rd World Congress of Cardiology, Toronto, Canada, 2001)
  • Marino BS, Wernovsky G, Helfaer M. Assessing quality of life in children and adolescents with heart disease:  comparing item generation from children, adolescents, parents, and medical personnel. Crit Care Med 2001; 29[suppl 12]:A129. (National presentation at the 31st Critical Care Congress, San Diego, CA, 2002)
  • Marino BS, Korteweg AE, Henket M, Gallagher M, Toms M, Dominguez TE, Gleason M, Helfaer M, Wernovsky G. The subjective assessment of general health status and school performance by pediatric patients with heart disease and their parents: do they agree?  Pediatr Cardiol 2002; 23:676A. (National presentation at the Section on Cardiology and Cardiac Surgery of the American Academy of Pediatrics National Conference and Exhibition, Boston, MA, 2002)
  • Wray J, Franklin R, Blyth J, Stumper O, Elliott M, Sanchez M, Lunnon-Wood T, Rees P,Wernovsky G, Marino BS.  The development of a disease specific measure to assess quality of life in children and adolescents with heart disease – an international study. (International presentation at the Working Group on Psychosocial Problems in Congenital Heart Disease, Vienna, Austria, 2004)
  • Marino BS, Shera D, Shea J, Gallagher M, Lee A, Stern W, Cho C, Davis L, Aguirre A, Tong E, Teitel D, Mussatto K, Ghanayem N, Gleason M, Helfaer M, Wernovsky G.  The Pediatric Cardiac Quality of Life Inventory: a quality of life measure for children and adolescents with heart disease.  J Am Coll Cardiol 2005; 45(Suppl A):328A. (National presentation at the 54th Scientific Session of the American College of Cardiology, Orlando, Florida, 2005)
  • Marino BS, Shera D, Shea JA, Ahearn L, Tomlinson R, Welkom J, Schissler A, Dunn S, Cohen MI, Hill M, Wray J, Kazak AE, Wernovsky G.  The pediatric cardiac quality of life inventory testing trial: reliability and validity data.  (International presentation at the Association of European Pediatric Cardiology Psychosocial Working Group, Belfast, Ireland (UK), 2006)
  • Marino BS, Shera DM, Shea JA, Kimmel S, Kazak AE, Wernovsky G.  Testing the Pediatric Cardiac Quality of Life Inventory.  (National presentation at the NIH Medical Rehabilitation Research Training Workshop, Rockville, MD, 2006)
  • Kaltman JR, Tomlinson R, Hurd L, Tanel RE, Shah MJ, Vetter VL, Shera D, Kazak A, Wernovsky G, Marino BS.  Quality of life in pediatric patients with the long QT syndrome.  Heart Rhythm 2007; 4(Supp 5):S45.  (National presentation at Heart Rhythm, Denver, CO, 2007)
  • Marino BS, Tomlinson RS, Wernovsky G, Drotar D, Hart K, Buchankjian E, Khoury PR, Baker A, Coughlin K, Shera D, Newburger J, Mahony L, Mussatto K, Tong E, Cohen M, Wray J, Gaynor JW, Helfaer MA, Kazak AE, Shea JA. The Pediatric Cardiac Quality of Life Inventory: a new reliable and valid disease-specific quality of life measure for children and adolescents with congenital and acquired heart disease.  Circulation 2008; 118:S-989. (National presentation at the 81st Scientific Sessions of the American Heart Association, New Orleans, LA, 2008)
  • Tomlinson RS, Ittenbach R, Wernovsky G, Helfaer MA, Mahony L, Newburger J, Mussatto K, Tong E, Jacobs JP, Buchakjian E, Drotar D, Marino BS. Indicators of disease severity predict long-term quality of life in the pediatric cardiac surgical population.  Ped Crit Care Med 2010; 11(2):Suppl S92-93 (National presentation at the 7th Pediatric Cardiac Intensive Care Symposium, Miami, FL, 2008; Awarded Outstanding Abstract for Poster Presentation)
  • Marino BS, Shea JA, Cassedy A, Tomlinson R, Hart K, Mussatto K, Mahony L, Newburger J, Tong E, Cohen MI, Helfaer MA, Kazak AE, Buchakjian E, Wernovsky G, Drotar D, Ittenbach R.  The Pediatric Cardiac Quality of Life Inventory: a new generalizable disease-specific quality of life measure for children and Adolescents with Congenital and Acquired Heart Disease.  J Am Coll Cardiol 2009; 53(10):Suppl A. (National presentation at the 58th Scientific Sessions of the American College of Cardiology, Orlando, FL, 2009)
  • Marino BS, Hart K, Drotar D, Tomlinson R, Mellion K, Ittenbach R, Buchakjian E, Mahony L, Newburger J, Mussatto K, Tong E, Cohen MI, Kazak AE, Shea JA, PhD, Helfaer MA, Gaynor JW, Wernovsky G.  Predictors of lower quality of life in children and adolescents with surgically palliated or repaired congenital heart disease: a multi-center study. J Am Coll Cardiol 2009; 53(10):Supp A.  (National presentation at the 58th Scientific Sessions of the American College of Cardiology, Orlando, FL, 2009)
  • Wray J, Brown K, Franklin R, Casale L, Guy S, Blyth J, Cassedy A, Marino BS.  The Pediatric Cardiac Quality of Life Inventory: testing a new disease specific quality of life measure in the United Kingdom. Archives of Disease in Childhood 2010; 95:(Suppl1) A74.  (International presentation at the Royal College of Paediatrics and Child Health, Warwick, England, 2010)
  • Wray J, Brown K, Franklin R, Casale L, Guy S, Blyth J, Cassedy A, Marino BS. Testing a new disease specific quality of life measure for children and adolescents with heart disease in the United Kingdom Cardiol in the Young 2010; 20:(Suppl2) P-84. (International presentation at the 44th Annual Association of European Pediatric Cardiology, Innsbruck, Austria, 2010))
  • Wray J, Brown K, Franklin R, Cassedy A, Guy S, Casale L, Mellion K, Burger M, Sage J, Andersen C, Blyth J, Marino BS.  A new disease specific quality of life measure for children and adolescents in the United Kingdom.  Circulation 2010; 122:A10 (National presentation at the 83rd Scientific Sessions of the American Heart Association, Chicago, IL, 2010)
  • Marino BS, Beebe D, Cassedy A, Riedel M, Burger M, Medek S, Finan S, Andersen C, Uzark K, Ross J, Ittenbach RF, Drotar D.  Executive functioning, gross motor ability, and mood are key drivers of poorer quality of life in child and adolescent survivors with complex congenital heart disease. J Am Coll Cardiol 2011; 57(14s1):E421-E421 (National presentation at the 60th Scientific Sessions of the American College of Cardiology, New Orleans, LA, 2011)
  • Czosek J, Bonney WJ, Mah D, Cassedy A, Tanel RE, Imundo JR, Singh AK, Cohen M, Miyake C, Fawley K, Marino BS. Impact of cardiac devices on the quality of life in pediatric patients and parents. Circulation 2011; 124:A10016 (National presentation at the 84th Scientific Sessions of the American Heart Association, Orlando, FL, 2011)
  • Marino BS, Cassedy AEC,  Drotar D, Wernovsky G, Franklin R, Brown K, Rosenthal D, Breidert J, Riedel M, Kazak A, Wray J. Psychosocial morbidity factors mediate the relationship between heart disease complexity and lower quality of life. J Am Coll Cardiol 2012; 59(13):E773. (National presentation at the 61st Scientific Sessions of the American College of Cardiology, Chicago, IL, 2012)