Effectiveness of a Web-Based Application to Monitor Health-Related Quality of Life

BACKGROUND AND OBJECTIVE: Monitoring health-related quality of life (HRQoL) by using electronic patient-reported outcomes (ePROs) has been only minimally evaluated in pediatrics. Children with juvenile idiopathic arthritis (JIA) are at risk for HRQoL problems. The aim of this study was to investigate the effectiveness of ePROs in clinical pediatric rheumatology care. METHODS: All children (aged 0–18 years) with JIA visiting any of the 4 pediatric rheumatology clinics in Amsterdam between February 2009 and February 2010 were eligible for this sequential cohort intervention study. Before an outpatient consultation, children (aged 8–18 years) or parents (of children aged 0–7 years) completed web-based questionnaires. The resulting ePROfile was provided to the pediatric rheumatologist (PR). The study was divided into a control period in which the ePROfile was not discussed during consultation, and an intervention period in which the ePROfile was provided and discussed during consultation. Effectiveness was evaluated in terms of communication about different HRQoL topics, referral to a psychologist, and satisfaction with the consultations. RESULTS: Out of the eligible JIA patients, 176 (65%) participated in the study. Use of the ePROfile increased discussion of psychosocial topics (P < .01), as well as the PR’s satisfaction with provided care during consultation (P < .01). The use of ePROfiles did not affect referrals to a psychologist or parental satisfaction. Parents and PRs evaluated the use of the ePROfile as positive in 80% to 100% of the consultations. CONCLUSIONS: Our web-based application to systemically monitor HRQoL problems in pediatric rheumatology contributed significantly to communication about psychosocial issues in a positive way. We recommend implementation of ePROs in pediatric clinical practice.

[1]  Lotte Haverman,et al.  Development and implementation of a patient reported outcome intervention (QLIC-ON PROfile) in clinical paediatric oncology practice. , 2010, Patient education and counseling.

[2]  Gordon H Guyatt,et al.  Exploration of the value of health-related quality-of-life information from clinical research and into clinical practice. , 2007, Mayo Clinic proceedings.

[3]  H. Duivenvoorden,et al.  Effectiveness of health-related quality-of-life measurement in clinical practice: a prospective, randomized controlled trial in patients with chronic liver disease and their physicians , 2008, Quality of Life Research.

[4]  L. Carlson,et al.  Impact of computerized quality of life screening on physician behaviour and patient satisfaction in lung cancer outpatients , 2000, Psycho-oncology.

[5]  R. Fitzpatrick,et al.  Impact of patient-reported outcome measures on routine practice: a structured review. , 2006, Journal of evaluation in clinical practice.

[6]  J. McDonagh,et al.  Health-related quality of life in adolescents with juvenile idiopathic arthritis. , 2006, Arthritis and rheumatism.

[7]  Henriette A. Delemarre-van de Waal,et al.  Monitoring and Discussing Health Related Quality of Life in adolescents with type 1 diabetes improves psychosocial well-being . A randomized controlled trial , 2008 .

[8]  Lotte Haverman,et al.  Monitoring health-related quality of life in paediatric practice: development of an innovative web-based application , 2011, BMC pediatrics.

[9]  H. Caron,et al.  The influence of patient reported outcomes on the discussion of psychosocial issues in children with cancer , 2012, Pediatric blood & cancer.

[10]  F B Lammes,et al.  Doctor-patient communication and cancer patients' quality of life and satisfaction. , 2000, Patient education and counseling.

[11]  P. Selby,et al.  Patients report improvements in continuity of care when quality of life assessments are used routinely in oncology practice: secondary outcomes of a randomised controlled trial. , 2010, European journal of cancer.

[12]  B. Feldman,et al.  Distinction of quality of life, health related quality of life, and health status in children referred for rheumatologic care. , 2000, The Journal of rheumatology.

[13]  J. M. McCoy,et al.  Improving patient quality of life with feedback to physicians about functional status , 1995, Journal of General Internal Medicine.

[14]  E. Verrips,et al.  Health-related quality of life problems of children aged 8–11 years with a chronic disease , 2007, Developmental neurorehabilitation.

[15]  J. Bensing,et al.  Endpoints in medical communication research, proposing a framework of functions and outcomes. , 2009, Patient education and counseling.

[16]  C. Darby.  Patient/parent assessment of the quality of care. , 2002, Ambulatory pediatrics : the official journal of the Ambulatory Pediatric Association.

[17]  J. Fries,et al.  Measurement of health status in children with juvenile rheumatoid arthritis. , 1994, Arthritis and rheumatism.

[18]  G. Donenberg,et al.  Psychological adjustment of children and adolescents with chronic arthritis: a meta-analytic review. , 2003, Journal of pediatric psychology.

[19]  W. Kuis,et al.  The Dutch version of the Childhood Health Assessment Questionnaire (CHAQ) and the Child Health Questionnaire (CHQ). , 2001, Clinical and Experimental Rheumatology.

[20]  Galina Velikova,et al.  Measuring quality of life in routine oncology practice improves communication and patient well-being: a randomized controlled trial. , 2004, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[21]  G. Guyatt,et al.  The impact of measuring patient-reported outcomes in clinical practice: a systematic review of the literature , 2008, Quality of Life Research.

[22]  J. Varni,et al.  The relationship between health-related quality of life, pain and coping strategies in juvenile idiopathic arthritis. , 2003, Rheumatology.

[23]  Z. Balogh,et al.  Health-related quality of life of patients with juvenile idiopathic arthritis coming from 3 different geographic areas. The PRINTO multinational quality of life cohort study. , 2006, Rheumatology.

[24]  H. Heymans,et al.  Hidden Consequences of Success in Pediatrics: Parental Health-Related Quality of Life—Results From the Care Project , 2008, Pediatrics.

[25]  A. Martini,et al.  A New Approach to Clinical Care of Juvenile Idiopathic Arthritis: The Juvenile Arthritis Multidimensional Assessment Report , 2011, The Journal of Rheumatology.

[26]  H. Caron,et al.  Reporting health‐related quality of life scores to physicians during routine follow‐up visits of pediatric oncology patients: Is it effective? , 2012, Pediatric blood & cancer.

[27]  J. Varni,et al.  Health and Quality of Life Outcomes , 2005 .

[28]  N. Aaronson,et al.  Health-related quality-of-life assessments and patient-physician communication: a randomized controlled trial. , 2002, JAMA.

[29]  David Feeny,et al.  Assessing the use of health-related quality of life measures in the routine clinical care of lung-transplant patients , 2010, Quality of Life Research.

[30]  Policy Statement.  Patient- and Family-Centered Care and the Pediatrician’s Role , 2013, Pediatric Clinical Practice Guidelines & Policies.

[31]  F. Oort,et al.  Satisfaction with the outpatient encounter: a comparison of patients' and physicians' views. , 2004, Journal of general internal medicine.

[32]  Femke H M Prince,et al.  Diagnosis and management of juvenile idiopathic arthritis , 2010, BMJ : British Medical Journal.

[33]  J. Varni,et al.  The ePedsQL™ in Type 1 and Type 2 Diabetes , 2008, Diabetes Care.

[34]  M. Fekkes,et al.  Development and psychometric evaluation of the TAPQOL: A health-related quality of life instrument for 1–5-year-old children , 2004, Quality of Life Research.

[35]  M. Bullinger,et al.  The European DISABKIDS project: development of seven condition-specific modules to measure health related quality of life in children and adolescents , 2005, Health and quality of life outcomes.

[36]  Joanne Greenhalgh,et al.  Implementing patient-reported outcomes assessment in clinical practice: a review of the options and considerations , 2012, Quality of Life Research.

[37]  M. M. Haentjens,et al.  Health related quality of life of Dutch children: psychometric properties of the PedsQL in the Netherlands , 2009, BMC pediatrics.

[38]  N K Aaronson,et al.  Quality of life assessment in daily clinical oncology practice: a feasibility study. , 1998, European journal of cancer.

[39]  N. Aaronson,et al.  Use of patient-reported outcomes in clinical practice , 2009, The Lancet.

[40]  Michael Seid,et al.  The PedsQL 4.0 as a pediatric population health measure: feasibility, reliability, and validity. , 2003, Ambulatory pediatrics : the official journal of the Ambulatory Pediatric Association.