Skip to main content
Top
Published in: Health and Quality of Life Outcomes 1/2005

Open Access 01-12-2005 | Review

Health-related quality of life measurement in pediatric clinical practice: An appraisal and precept for future research and application

Authors: James W Varni, Tasha M Burwinkle, Mariella M Lane

Published in: Health and Quality of Life Outcomes | Issue 1/2005

Login to get access

Abstract

Health-related quality of life (HRQOL) measurement has emerged as an important health outcome in clinical trials, clinical practice improvement strategies, and healthcare services research and evaluation. HRQOL measures are also increasingly proposed for use in clinical practice settings to inform treatment decisions. In settings where HRQOL measures have been utilized with adults, physicians report such measures as useful, some physicians alter their treatment based on patient reports on such instruments, and patients themselves generally feel the instruments to be helpful. However, there is a dearth of studies evaluating the clinical utility of HRQOL measurement in pediatric clinical practice. This paper provides an updated review of the literature and proposes a precept governing the application of pediatric HRQOL measurement in pediatric clinical practice. Utilizing HRQOL measurement in pediatric healthcare settings can facilitate patient-physician communication, improve patient/parent satisfaction, identify hidden morbidities, and assist in clinical decision-making. Demonstrating the utility of pediatric HRQOL measurement in identifying children with the greatest needs, while simultaneously demonstrating the cost advantages of providing timely, targeted interventions to address those needs, may ultimately provide the driving force for incorporating HRQOL measurement in pediatric clinical practice.
Literature
1.
go back to reference Fayers PM, Machin D: Quality of life: Assessment, analysis and interpretation. New York: Wiley; 2000.CrossRef Fayers PM, Machin D: Quality of life: Assessment, analysis and interpretation. New York: Wiley; 2000.CrossRef
2.
go back to reference Rubenstein LV, Calkins DR, Young RT, Cleary PD, Fink A, Kosecoff J, Jette AM, Davies AR, Delbanco TL, Brook RH: Improving patient function: A randomized trial of functional disability screening. Ann Intern Med 1989, 111: 836–842.PubMedCrossRef Rubenstein LV, Calkins DR, Young RT, Cleary PD, Fink A, Kosecoff J, Jette AM, Davies AR, Delbanco TL, Brook RH: Improving patient function: A randomized trial of functional disability screening. Ann Intern Med 1989, 111: 836–842.PubMedCrossRef
3.
go back to reference Nelson EC, Landgraf JM, Hays RD, Wasson JH, Kirk JW: The functional status of patients: How can it be measured in physicians' offices? Med Care 1990, 28: 1111–1126.PubMedCrossRef Nelson EC, Landgraf JM, Hays RD, Wasson JH, Kirk JW: The functional status of patients: How can it be measured in physicians' offices? Med Care 1990, 28: 1111–1126.PubMedCrossRef
4.
go back to reference Jenkinson C: Quality of life measurement: Does it have a place in routine clinical assessment. J Psychosom Res 1994, 38: 377–381. 10.1016/0022-3999(94)90098-1PubMedCrossRef Jenkinson C: Quality of life measurement: Does it have a place in routine clinical assessment. J Psychosom Res 1994, 38: 377–381. 10.1016/0022-3999(94)90098-1PubMedCrossRef
5.
go back to reference Albrecht G: Using subjective health assessments in practice and policy-making. Health Care Anal 1996, 4: 284–292. Publisher Full Text 10.1002/(SICI)1099-1042(199611)4:4<284::AID-HCA194>3.0.CO;2-WPubMed Albrecht G: Using subjective health assessments in practice and policy-making. Health Care Anal 1996, 4: 284–292. Publisher Full Text 10.1002/(SICI)1099-1042(199611)4:4<284::AID-HCA194>3.0.CO;2-WPubMed
6.
go back to reference Greehnalgh J, Meadows K: The effectiveness of the use of patient-based measures of health in routine practice in improving the process and outcomes of patient care: A literature review. J Eval Clin Pract 1999, 5: 401–416. 10.1046/j.1365-2753.1999.00209.xCrossRef Greehnalgh J, Meadows K: The effectiveness of the use of patient-based measures of health in routine practice in improving the process and outcomes of patient care: A literature review. J Eval Clin Pract 1999, 5: 401–416. 10.1046/j.1365-2753.1999.00209.xCrossRef
7.
go back to reference Theirac SO: Forces motivating the use of health status assessment measures in clinical settings and related research. Med Care 1992,30(5 Suppl):MS15-MS22. Theirac SO: Forces motivating the use of health status assessment measures in clinical settings and related research. Med Care 1992,30(5 Suppl):MS15-MS22.
8.
go back to reference Wagner AK, Ehrenberg BL, Tran TA, Bungay KM, Cynn DJ, Rogers WH: Patient-based health status measurement in clinical practice: A study of its impact on epilepsy patients' care. Qual Life Res 1997, 6: 329–341. 10.1023/A:1018479209369PubMedCrossRef Wagner AK, Ehrenberg BL, Tran TA, Bungay KM, Cynn DJ, Rogers WH: Patient-based health status measurement in clinical practice: A study of its impact on epilepsy patients' care. Qual Life Res 1997, 6: 329–341. 10.1023/A:1018479209369PubMedCrossRef
9.
go back to reference Detmar SB, Aaronson NK: Quality of life assessment in daily clinical oncology practice: A feasibility study. Eur J Cancer 1998, 34: 1181–1186. 10.1016/S0959-8049(98)00018-5PubMedCrossRef Detmar SB, Aaronson NK: Quality of life assessment in daily clinical oncology practice: A feasibility study. Eur J Cancer 1998, 34: 1181–1186. 10.1016/S0959-8049(98)00018-5PubMedCrossRef
10.
go back to reference Detmar SB, Muller MJ, Schornagel JH, Wever LD, Aaronson NK: Health-related quality of life assessments and patient-physician communication: a randomized controlled trial. JAMA 2002, 288: 3027–3034. 10.1001/jama.288.23.3027PubMedCrossRef Detmar SB, Muller MJ, Schornagel JH, Wever LD, Aaronson NK: Health-related quality of life assessments and patient-physician communication: a randomized controlled trial. JAMA 2002, 288: 3027–3034. 10.1001/jama.288.23.3027PubMedCrossRef
11.
go back to reference Jacobsen PB, Davis K, Cella D: Assessing quality of life in research and clinical practice. Oncology (Huntingt) 2002,16( 9 Suppl 10):133–139. Jacobsen PB, Davis K, Cella D: Assessing quality of life in research and clinical practice. Oncology (Huntingt) 2002,16( 9 Suppl 10):133–139.
12.
go back to reference Detmar SB, Aaronson NK, Wever LDV, Muller M, Schornagel JH: How are you feeling? Who wants to know? Patients' and oncologists' preferences for discussing health-related quality of life issues. J Clin Oncol 2000, 18: 3295–3301.PubMed Detmar SB, Aaronson NK, Wever LDV, Muller M, Schornagel JH: How are you feeling? Who wants to know? Patients' and oncologists' preferences for discussing health-related quality of life issues. J Clin Oncol 2000, 18: 3295–3301.PubMed
13.
go back to reference Street RL, Gold WR, McDowell T: Using health status surveys in medical consultations. Med Care 1994, 32: 732–744.PubMedCrossRef Street RL, Gold WR, McDowell T: Using health status surveys in medical consultations. Med Care 1994, 32: 732–744.PubMedCrossRef
14.
go back to reference Detmar SB, Muller MJ, Wever LDV, Schornagel JH, Aaronson NK: Patient-physician communication during outpatient palliative treatment visits: An observational study. JAMA 2001, 285: 1351–1357. 10.1001/jama.285.10.1351PubMedCrossRef Detmar SB, Muller MJ, Wever LDV, Schornagel JH, Aaronson NK: Patient-physician communication during outpatient palliative treatment visits: An observational study. JAMA 2001, 285: 1351–1357. 10.1001/jama.285.10.1351PubMedCrossRef
15.
go back to reference Maguire P, Faulkner A, Booth K, Elliott C, Hillier V: Helping cancer patients disclose their concerns. Eur J Cancer 1996, 32A: 78–81. 10.1016/0959-8049(95)00527-7PubMedCrossRef Maguire P, Faulkner A, Booth K, Elliott C, Hillier V: Helping cancer patients disclose their concerns. Eur J Cancer 1996, 32A: 78–81. 10.1016/0959-8049(95)00527-7PubMedCrossRef
16.
go back to reference Beckman HB, Frankel RM: The effect of physician behavior on the collection of data. Ann Intern Med 1984, 101: 692–696.PubMedCrossRef Beckman HB, Frankel RM: The effect of physician behavior on the collection of data. Ann Intern Med 1984, 101: 692–696.PubMedCrossRef
17.
go back to reference Stewart MA: What is a successful doctor-patient interview? A study of interactions and outcomes. Soc Sci Med 1984, 19: 167–175. 10.1016/0277-9536(84)90284-3PubMedCrossRef Stewart MA: What is a successful doctor-patient interview? A study of interactions and outcomes. Soc Sci Med 1984, 19: 167–175. 10.1016/0277-9536(84)90284-3PubMedCrossRef
18.
go back to reference Bertakis KD, Roter D, Putnam SM: The relationship of physician medical interview style to patient satisfaction. J Fam Pract 1991, 32: 175–181.PubMed Bertakis KD, Roter D, Putnam SM: The relationship of physician medical interview style to patient satisfaction. J Fam Pract 1991, 32: 175–181.PubMed
19.
go back to reference Brody DS, Lerman CE, Wolfson HG, Caputo GC: Improvement in physicians' counseling of patients with mental health problems. Arch Intern Med 1990, 150: 993–998. 10.1001/archinte.150.5.993PubMedCrossRef Brody DS, Lerman CE, Wolfson HG, Caputo GC: Improvement in physicians' counseling of patients with mental health problems. Arch Intern Med 1990, 150: 993–998. 10.1001/archinte.150.5.993PubMedCrossRef
20.
go back to reference Wartman SA, Morlock LL, Malitz FE, Palm E: Impact of divergent evaluations by physicians and patients of patients' complaints. Public Health Rep 1983, 98: 141–145.PubMedCentralPubMed Wartman SA, Morlock LL, Malitz FE, Palm E: Impact of divergent evaluations by physicians and patients of patients' complaints. Public Health Rep 1983, 98: 141–145.PubMedCentralPubMed
21.
22.
go back to reference Calkins DR, Rubenstein LV, Cleary PD, Davies AR, Jette AM, Fink A, Kosecoff J, Young RT, Brook RH, Delbanco TL: Failure of physicians to recognize functional disability in ambulatory patients. Ann Intern Med 1991, 114: 451–454.PubMedCrossRef Calkins DR, Rubenstein LV, Cleary PD, Davies AR, Jette AM, Fink A, Kosecoff J, Young RT, Brook RH, Delbanco TL: Failure of physicians to recognize functional disability in ambulatory patients. Ann Intern Med 1991, 114: 451–454.PubMedCrossRef
23.
go back to reference Nerenz DR, Repasky DP, Whitehouse FW, Kahkonen DM: Ongoing assessment of health status in patients with diabetes mellitus. Med Care 1992,30((5 Suppl)):MS112-MS124.PubMed Nerenz DR, Repasky DP, Whitehouse FW, Kahkonen DM: Ongoing assessment of health status in patients with diabetes mellitus. Med Care 1992,30((5 Suppl)):MS112-MS124.PubMed
24.
go back to reference Brody DS: Physician recognition of behavioral, psychological, and social aspects of medical care. Arch Intern Med 1980, 130: 1286–1289. 10.1001/archinte.140.10.1286CrossRef Brody DS: Physician recognition of behavioral, psychological, and social aspects of medical care. Arch Intern Med 1980, 130: 1286–1289. 10.1001/archinte.140.10.1286CrossRef
25.
go back to reference Steward MA, Buck CW: Physicians' knowledge of and response to patients' problems. Med Care 1977, 15: 578–585.CrossRef Steward MA, Buck CW: Physicians' knowledge of and response to patients' problems. Med Care 1977, 15: 578–585.CrossRef
26.
go back to reference Nelson E, Conger B, Douglass R, Gephart D, Kirk J, Page R, Clark A, Johnson K, Stone K, Wasson J, Zubkoff M: Functional health status levels of primary care patients. JAMA 1983, 249: 3331–3338. 10.1001/jama.249.24.3331PubMedCrossRef Nelson E, Conger B, Douglass R, Gephart D, Kirk J, Page R, Clark A, Johnson K, Stone K, Wasson J, Zubkoff M: Functional health status levels of primary care patients. JAMA 1983, 249: 3331–3338. 10.1001/jama.249.24.3331PubMedCrossRef
27.
go back to reference Sprangers MA, Aaronson NK: The role of healthcare providers and significant others in evaluating the quality of life of patients with chronic disease: A review. J Clinic Epidemiol 1992, 45: 743–760. 10.1016/0895-4356(92)90052-OCrossRef Sprangers MA, Aaronson NK: The role of healthcare providers and significant others in evaluating the quality of life of patients with chronic disease: A review. J Clinic Epidemiol 1992, 45: 743–760. 10.1016/0895-4356(92)90052-OCrossRef
29.
go back to reference Dowrick C: Does testing for depression influence diagnosis or management by general practitioners? Fam Pract 1995, 12: 461–465.PubMedCrossRef Dowrick C: Does testing for depression influence diagnosis or management by general practitioners? Fam Pract 1995, 12: 461–465.PubMedCrossRef
30.
go back to reference Magruder-Habib K, Zung WWK, Feussner JR: Improving physicians' recognition and treatment of depression in general medical care. Med Care 1990, 28: 239–250.PubMedCrossRef Magruder-Habib K, Zung WWK, Feussner JR: Improving physicians' recognition and treatment of depression in general medical care. Med Care 1990, 28: 239–250.PubMedCrossRef
31.
go back to reference Mazonson PD, Mathias SD, Fifer SK, Buesching DP, Malek P, Patrick DL: The Mental Health Patient Profile: Does it change primary care physicians' practice patterns? J Am Board Fam Pract 1996, 9: 336–345.PubMed Mazonson PD, Mathias SD, Fifer SK, Buesching DP, Malek P, Patrick DL: The Mental Health Patient Profile: Does it change primary care physicians' practice patterns? J Am Board Fam Pract 1996, 9: 336–345.PubMed
32.
go back to reference Gold I, Baraff LJ: Psychiatric screening in the emergency department: Its effects on physician behavior. Ann Emerg Med 1989, 18: 875–880.PubMedCrossRef Gold I, Baraff LJ: Psychiatric screening in the emergency department: Its effects on physician behavior. Ann Emerg Med 1989, 18: 875–880.PubMedCrossRef
33.
go back to reference Rubenstein LV, McCoy JM, Cope DW, Barrett PA, Hirsch SH, Messer KS, Young RT: Improving patient quality of life with feedback to physicians about functional status. J Gen Intern Med 1995, 10: 607–614.PubMedCrossRef Rubenstein LV, McCoy JM, Cope DW, Barrett PA, Hirsch SH, Messer KS, Young RT: Improving patient quality of life with feedback to physicians about functional status. J Gen Intern Med 1995, 10: 607–614.PubMedCrossRef
34.
go back to reference Costello EJ, Edelbrock C, Costello AJ, Dulkan MK, Burns BJ, Brent D: Psychopathology in pediatric primary care: The new hidden morbidity. Pediatrics 1988, 82: 415–424.PubMed Costello EJ, Edelbrock C, Costello AJ, Dulkan MK, Burns BJ, Brent D: Psychopathology in pediatric primary care: The new hidden morbidity. Pediatrics 1988, 82: 415–424.PubMed
35.
go back to reference Varni JW, Setoguchi Y: Screening for behavioral and emotional problems in children and adolescents with congenital or acquired limb deficiencies. Am J Dis Child 1992, 146: 103–107.PubMed Varni JW, Setoguchi Y: Screening for behavioral and emotional problems in children and adolescents with congenital or acquired limb deficiencies. Am J Dis Child 1992, 146: 103–107.PubMed
36.
go back to reference Wolfe J, Grier HE, Klar N, Levin SB, Ellenbogen JM, Salem-Schatz S, Emanuel EJ, Weeks JC: Symptoms and suffering at the end of life in children with cancer. N Engl J Med 2000, 342: 236–333. 10.1056/NEJM200002033420506CrossRef Wolfe J, Grier HE, Klar N, Levin SB, Ellenbogen JM, Salem-Schatz S, Emanuel EJ, Weeks JC: Symptoms and suffering at the end of life in children with cancer. N Engl J Med 2000, 342: 236–333. 10.1056/NEJM200002033420506CrossRef
37.
go back to reference Varni JW, Seid M, Knight TS, Uzark K, Szer IS: The PedsQL™ 4.0 Generic Core Scales: Sensitivity, responsiveness, and impact on clinical decision-making. J Behav Med 2002, 25: 175–193. 10.1023/A:1014836921812PubMedCrossRef Varni JW, Seid M, Knight TS, Uzark K, Szer IS: The PedsQL™ 4.0 Generic Core Scales: Sensitivity, responsiveness, and impact on clinical decision-making. J Behav Med 2002, 25: 175–193. 10.1023/A:1014836921812PubMedCrossRef
38.
go back to reference Sullivan M: The new subjective medicine: Taking the patient's point of view on health care and health. Soc Sci Med 2003, 56: 1595–1604. 10.1016/S0277-9536(02)00159-4PubMedCrossRef Sullivan M: The new subjective medicine: Taking the patient's point of view on health care and health. Soc Sci Med 2003, 56: 1595–1604. 10.1016/S0277-9536(02)00159-4PubMedCrossRef
39.
go back to reference Espallargues M, Vaalderas HM, Alonso J: Provision of feedback on perceived health status to health care professionals. Med Care 2000, 38: 175–186. 10.1097/00005650-200002000-00007PubMedCrossRef Espallargues M, Vaalderas HM, Alonso J: Provision of feedback on perceived health status to health care professionals. Med Care 2000, 38: 175–186. 10.1097/00005650-200002000-00007PubMedCrossRef
40.
go back to reference Kazis LE, Callahan LF, Meenan RF, Pincus T: Health status reports in the care of patients with rheumatoid arthritis. J Clin Epidemiol 1990, 43: 1243–1253. 10.1016/0895-4356(90)90025-KPubMedCrossRef Kazis LE, Callahan LF, Meenan RF, Pincus T: Health status reports in the care of patients with rheumatoid arthritis. J Clin Epidemiol 1990, 43: 1243–1253. 10.1016/0895-4356(90)90025-KPubMedCrossRef
41.
go back to reference Gilbody SM, House AO, Sheldon T: Routine administration of health related quality of life (HRQoL) and needs assessment instruments to improve psychological outcome- a systematic review. Psychol Med 2002, 32: 1345–1356. 10.1017/S0033291702006001PubMedCrossRef Gilbody SM, House AO, Sheldon T: Routine administration of health related quality of life (HRQoL) and needs assessment instruments to improve psychological outcome- a systematic review. Psychol Med 2002, 32: 1345–1356. 10.1017/S0033291702006001PubMedCrossRef
42.
go back to reference McHorney CA, Bricker DE: A qualitative study of patients' and physicians' views about practice-based functional health assessment. Med Care 2002, 40: 1113–1125. 10.1097/00005650-200211000-00012PubMedCrossRef McHorney CA, Bricker DE: A qualitative study of patients' and physicians' views about practice-based functional health assessment. Med Care 2002, 40: 1113–1125. 10.1097/00005650-200211000-00012PubMedCrossRef
43.
go back to reference Meadows KA, Twidale F, Rogers D: Action research- a model for introducing standardized health assessment in general practice: An exploratory study. J Eval Clin Pract 1998, 4: 225–239. 10.1046/j.1365-2753.1998.00005.xPubMedCrossRef Meadows KA, Twidale F, Rogers D: Action research- a model for introducing standardized health assessment in general practice: An exploratory study. J Eval Clin Pract 1998, 4: 225–239. 10.1046/j.1365-2753.1998.00005.xPubMedCrossRef
44.
go back to reference Wasson J, Hays R, Rubenstein L, Nelson E, Leaning J, Johnson D, Keller A, Landgraf J, Rosenkrans C: The short term effect of patient health status assessment in a health maintenanace organization. Qual Life Res 1992, 1: 99–106. 10.1007/BF00439717PubMedCrossRef Wasson J, Hays R, Rubenstein L, Nelson E, Leaning J, Johnson D, Keller A, Landgraf J, Rosenkrans C: The short term effect of patient health status assessment in a health maintenanace organization. Qual Life Res 1992, 1: 99–106. 10.1007/BF00439717PubMedCrossRef
45.
go back to reference Golden WE: Health status measurement: Implementation strategies. Med Care 1992,30(5 Suppl):MS187-MS195.PubMed Golden WE: Health status measurement: Implementation strategies. Med Care 1992,30(5 Suppl):MS187-MS195.PubMed
46.
go back to reference Gilbody SM, House AO, Sheldon TA: Routinely administered questionnaires for depression and anxiety: A systematic review. BMJ 2001, 322: 406–409. 10.1136/bmj.322.7283.406PubMedCentralPubMedCrossRef Gilbody SM, House AO, Sheldon TA: Routinely administered questionnaires for depression and anxiety: A systematic review. BMJ 2001, 322: 406–409. 10.1136/bmj.322.7283.406PubMedCentralPubMedCrossRef
47.
go back to reference Rubenstein LV, McCoy JM, Cope DW: Improving patient functional status: A randomized trial of computer-generated resource and management suggestions. Clin Res 1989, 37: 801A. Rubenstein LV, McCoy JM, Cope DW: Improving patient functional status: A randomized trial of computer-generated resource and management suggestions. Clin Res 1989, 37: 801A.
48.
go back to reference Varni JW, Seid M, Knight TS, Burwinkle TM, Brown J, Szer IS: The PedsQL™ in pediatric rheumatology: Reliability, validity, and responsiveness of the Pediatric Quality of Life Inventory™ Generic Core Scales and Rheumatology Module. Arthritis Rheum 2002, 46: 714–725. 10.1002/art.10095PubMedCrossRef Varni JW, Seid M, Knight TS, Burwinkle TM, Brown J, Szer IS: The PedsQL™ in pediatric rheumatology: Reliability, validity, and responsiveness of the Pediatric Quality of Life Inventory™ Generic Core Scales and Rheumatology Module. Arthritis Rheum 2002, 46: 714–725. 10.1002/art.10095PubMedCrossRef
49.
go back to reference Calkins DR, Rubenstein LV, Cleary PD, Davies AR, Jette AM, Fink A, Kosecoff J, Young RT, Brook RH, Delbanco TL: Functional disability screening of ambulatory patients: A randomized controlled trial in a hospital-based group practice. J Gen Intern Med 1994, 9: 590–592.PubMedCrossRef Calkins DR, Rubenstein LV, Cleary PD, Davies AR, Jette AM, Fink A, Kosecoff J, Young RT, Brook RH, Delbanco TL: Functional disability screening of ambulatory patients: A randomized controlled trial in a hospital-based group practice. J Gen Intern Med 1994, 9: 590–592.PubMedCrossRef
50.
go back to reference Russak SM, Croft JD, Furst DE, Hohlbauch A, Liang MH, Moreland L, Ofman JJ, Paulus H, Simon LS, Weisman M, Tugwell P, Evidence-Based Medicine Working Groups in Rheumatology: The use of rheumatoid arthritis health-related quality of life patient questionnaires in clinical practice: Lessons learned. Arthritis Rheum 2003, 49: 574–584. 10.1002/art.11208PubMedCrossRef Russak SM, Croft JD, Furst DE, Hohlbauch A, Liang MH, Moreland L, Ofman JJ, Paulus H, Simon LS, Weisman M, Tugwell P, Evidence-Based Medicine Working Groups in Rheumatology: The use of rheumatoid arthritis health-related quality of life patient questionnaires in clinical practice: Lessons learned. Arthritis Rheum 2003, 49: 574–584. 10.1002/art.11208PubMedCrossRef
51.
go back to reference Carlson L, Speca M, Hagen N, Taenzer P: Computerized quality of life screening in a cancer pain clinic. J Palliat Care 2001, 17: 46–52.PubMed Carlson L, Speca M, Hagen N, Taenzer P: Computerized quality of life screening in a cancer pain clinic. J Palliat Care 2001, 17: 46–52.PubMed
52.
go back to reference O'Reilly JM, Hubbard ML, Lessler JT, Biemer PP, Turner CF: Audio and video computer assisted self-interviewing: Preliminary tests of new technologies for data collection. J Official Stat 1994, 10: 197–214. O'Reilly JM, Hubbard ML, Lessler JT, Biemer PP, Turner CF: Audio and video computer assisted self-interviewing: Preliminary tests of new technologies for data collection. J Official Stat 1994, 10: 197–214.
53.
go back to reference Turner CF, Rogers SM, Lindberg LD, Pleck JH, Sonenstein FL: Adolescent sexual behavior, drug use, and violence: Increased reporting with computer survey technology. Science 1998, 280: 867–873. 10.1126/science.280.5365.867PubMedCrossRef Turner CF, Rogers SM, Lindberg LD, Pleck JH, Sonenstein FL: Adolescent sexual behavior, drug use, and violence: Increased reporting with computer survey technology. Science 1998, 280: 867–873. 10.1126/science.280.5365.867PubMedCrossRef
54.
go back to reference Couper MP, Rowe B: Evaluation of a computer-assisted self-interview component in a computer-assisted personal interview survey. Pub Opin Quarterly 1996, 60: 89–105. 10.1086/297740CrossRef Couper MP, Rowe B: Evaluation of a computer-assisted self-interview component in a computer-assisted personal interview survey. Pub Opin Quarterly 1996, 60: 89–105. 10.1086/297740CrossRef
55.
go back to reference Levinson W, Roter D: Physicians' psychosocial beliefs correlate with their patient communication skills. J Gen Intern Med 1995, 10: 375–379.PubMedCrossRef Levinson W, Roter D: Physicians' psychosocial beliefs correlate with their patient communication skills. J Gen Intern Med 1995, 10: 375–379.PubMedCrossRef
56.
go back to reference Taylor KM, MacDonald KA, Bezjak A, Ng P, DePetrillo AD: Physicians perspective on quality of life: An exploratory study of oncologists. Qual Life Res 1996, 5: 5–14. 10.1007/BF00435963PubMedCrossRef Taylor KM, MacDonald KA, Bezjak A, Ng P, DePetrillo AD: Physicians perspective on quality of life: An exploratory study of oncologists. Qual Life Res 1996, 5: 5–14. 10.1007/BF00435963PubMedCrossRef
57.
go back to reference Varni JW, Thompson KL, Hanson V: The Varni/Thompson Pediatric Pain Questionnaire: I. Chronic musculoskeletal pain in juvenile rheumatoid arthritis. Pain 1987, 28: 27–38. 10.1016/0304-3959(87)91056-6PubMedCrossRef Varni JW, Thompson KL, Hanson V: The Varni/Thompson Pediatric Pain Questionnaire: I. Chronic musculoskeletal pain in juvenile rheumatoid arthritis. Pain 1987, 28: 27–38. 10.1016/0304-3959(87)91056-6PubMedCrossRef
58.
go back to reference Varni JW, Katz ER, Seid M, Quiggins DJL, Friedman-Bender A: The Pediatric Cancer Quality of Life Invenory-32 (PCQL-32): I. Reliability and Validity. Cancer 1998, 82: 1184–1196. Publisher Full Text 10.1002/(SICI)1097-0142(19980315)82:6<1184::AID-CNCR25>3.0.CO;2-1PubMedCrossRef Varni JW, Katz ER, Seid M, Quiggins DJL, Friedman-Bender A: The Pediatric Cancer Quality of Life Invenory-32 (PCQL-32): I. Reliability and Validity. Cancer 1998, 82: 1184–1196. Publisher Full Text 10.1002/(SICI)1097-0142(19980315)82:6<1184::AID-CNCR25>3.0.CO;2-1PubMedCrossRef
59.
go back to reference Varni JW, Seid M, Rode CA: The PedsQL™: Measurement model for the Pediatric Quality of Life Inventory. Med Care 1999, 37: 126–139. 10.1097/00005650-199902000-00003PubMedCrossRef Varni JW, Seid M, Rode CA: The PedsQL™: Measurement model for the Pediatric Quality of Life Inventory. Med Care 1999, 37: 126–139. 10.1097/00005650-199902000-00003PubMedCrossRef
60.
go back to reference Varni JW, Jacobs JR, Seid M: Treatment adherence as a predictor of health-related quality of life. In Promoting adherence to medical treatment in chronic childhood illness: Concepts, methods, and interventions. Edited by: Drotar D. Mahwah, NJ: Erlbaum; 2000:287–305. Varni JW, Jacobs JR, Seid M: Treatment adherence as a predictor of health-related quality of life. In Promoting adherence to medical treatment in chronic childhood illness: Concepts, methods, and interventions. Edited by: Drotar D. Mahwah, NJ: Erlbaum; 2000:287–305.
61.
go back to reference Teno J, Byock I, Field M: Research agenda for developing measures to examine quality of care and quality of life of patients diagnosed with life-limiting illness. J Pain Symptom Manag 1999, 17: 75–82. 10.1016/S0885-3924(98)00134-1CrossRef Teno J, Byock I, Field M: Research agenda for developing measures to examine quality of care and quality of life of patients diagnosed with life-limiting illness. J Pain Symptom Manag 1999, 17: 75–82. 10.1016/S0885-3924(98)00134-1CrossRef
62.
go back to reference Frost MH, Bonomi AE, Ferrans CE, Wong GY, Hays RD, Clinical Significance Consensus Meeting Group: Patient, clinician, and population perspectives on determining the clinical significance of quality-of-life scores. Mayo Clin Proc 2002, 77: 488–494.PubMedCrossRef Frost MH, Bonomi AE, Ferrans CE, Wong GY, Hays RD, Clinical Significance Consensus Meeting Group: Patient, clinician, and population perspectives on determining the clinical significance of quality-of-life scores. Mayo Clin Proc 2002, 77: 488–494.PubMedCrossRef
63.
go back to reference Varni JW, Burwinkle TM, Jacobs JR, Gottschalk M, Kaufman F, Jones KL: The PedsQL™ in Type 1 and Type 2 Diabetes: reliability and validity of the Pediatric Quality of Life Inventory™ Generic Core Scales and Type 1 Diabetes Module. Diabetes Care 2003, 26: 631–637.PubMedCrossRef Varni JW, Burwinkle TM, Jacobs JR, Gottschalk M, Kaufman F, Jones KL: The PedsQL™ in Type 1 and Type 2 Diabetes: reliability and validity of the Pediatric Quality of Life Inventory™ Generic Core Scales and Type 1 Diabetes Module. Diabetes Care 2003, 26: 631–637.PubMedCrossRef
64.
go back to reference McHorney CA: The potential clinical value of quality of life information response to Martin. Med Care 2002,40(6 Suppl):III56–62.PubMed McHorney CA: The potential clinical value of quality of life information response to Martin. Med Care 2002,40(6 Suppl):III56–62.PubMed
65.
go back to reference Stein REK, Gortmaker SL, Perrin EC, Perrin JM, Pless IB, Walker DK, Weitzman M: Severity of illness: Concepts and measurements. Lancet 1987, 2: 1506–1509. 10.1016/S0140-6736(87)92633-XPubMedCrossRef Stein REK, Gortmaker SL, Perrin EC, Perrin JM, Pless IB, Walker DK, Weitzman M: Severity of illness: Concepts and measurements. Lancet 1987, 2: 1506–1509. 10.1016/S0140-6736(87)92633-XPubMedCrossRef
66.
go back to reference Moore AA, Siu AL, Partridge JM, Hays RD, Adams J: A randomized trial of office-based screening for common problems in older persons. Am J Med 1997, 102: 371–378. 10.1016/S0002-9343(97)00080-6PubMedCrossRef Moore AA, Siu AL, Partridge JM, Hays RD, Adams J: A randomized trial of office-based screening for common problems in older persons. Am J Med 1997, 102: 371–378. 10.1016/S0002-9343(97)00080-6PubMedCrossRef
67.
go back to reference Eiser C, Morse R: The measurement of quality of life in children: past and future perspectives. Dev Beh Peds 2001, 22: 248–256.CrossRef Eiser C, Morse R: The measurement of quality of life in children: past and future perspectives. Dev Beh Peds 2001, 22: 248–256.CrossRef
68.
go back to reference Matza LS, Swensen AR, Flood EM, Secnik K, Leidy NK: Assessment of health-related life in children: a review of conceptual, methodological and regulatory issues. Val Health 2004, 79–92. 10.1111/j.1524-4733.2004.71273.x Matza LS, Swensen AR, Flood EM, Secnik K, Leidy NK: Assessment of health-related life in children: a review of conceptual, methodological and regulatory issues. Val Health 2004, 79–92. 10.1111/j.1524-4733.2004.71273.x
69.
go back to reference Patrick DL, Deyo RA: Generic and disease-specific measures in assessing health status and quality of life. Med Care 1989, 27: S217-S233.PubMedCrossRef Patrick DL, Deyo RA: Generic and disease-specific measures in assessing health status and quality of life. Med Care 1989, 27: S217-S233.PubMedCrossRef
70.
go back to reference Sprangers MAG, Cull A, Bjordal K, Groenvold M, Aaronson NK: The European Organization for Research and Treatment of Cancer approach to quality of life assessment: Guidelines for developing questionnaire modules. Qual Life Res 1993, 2: 287–295. 10.1007/BF00434800PubMedCrossRef Sprangers MAG, Cull A, Bjordal K, Groenvold M, Aaronson NK: The European Organization for Research and Treatment of Cancer approach to quality of life assessment: Guidelines for developing questionnaire modules. Qual Life Res 1993, 2: 287–295. 10.1007/BF00434800PubMedCrossRef
71.
go back to reference Varni JW, Burwinkle TM, Seid M, Skarr D: The PedsQL™ 4.0 as a pediatric population health measure: Feasibility, reliability, and validity. Ambul Pediatr 2003, 3: 329–341. Publisher Full Text 10.1367/1539-4409(2003)003<0329:TPAAPP>2.0.CO;2PubMedCrossRef Varni JW, Burwinkle TM, Seid M, Skarr D: The PedsQL™ 4.0 as a pediatric population health measure: Feasibility, reliability, and validity. Ambul Pediatr 2003, 3: 329–341. Publisher Full Text 10.1367/1539-4409(2003)003<0329:TPAAPP>2.0.CO;2PubMedCrossRef
72.
go back to reference Varni JW, Burwinkle TM, Katz ER, Meeske K, Dickinson P: The PedsQL™ in pediatric cancer: Reliability and validity of the Pediatric Quality of Life Inventory™ Generic Core Scales, Multidimensional Fatigue Scale, and Cancer Module. Cancer 2002, 94: 2090–2106. 10.1002/cncr.10428PubMedCrossRef Varni JW, Burwinkle TM, Katz ER, Meeske K, Dickinson P: The PedsQL™ in pediatric cancer: Reliability and validity of the Pediatric Quality of Life Inventory™ Generic Core Scales, Multidimensional Fatigue Scale, and Cancer Module. Cancer 2002, 94: 2090–2106. 10.1002/cncr.10428PubMedCrossRef
73.
go back to reference Guyatt GH, Feeny DH, Patrick DL: Measuring health-related quality of life: Basic Science Review. Ann Int Med 1993, 70: 225–230. Guyatt GH, Feeny DH, Patrick DL: Measuring health-related quality of life: Basic Science Review. Ann Int Med 1993, 70: 225–230.
74.
go back to reference Varni JW, Katz ER, Colegrove R, Dolgin M: Adjustment of children with newly diagnosed cancer: Cross-informant variance. J Psychosoc Oncol 1995, 13: 23–38.CrossRef Varni JW, Katz ER, Colegrove R, Dolgin M: Adjustment of children with newly diagnosed cancer: Cross-informant variance. J Psychosoc Oncol 1995, 13: 23–38.CrossRef
75.
go back to reference Koot HM, Wallander JL, Eds: Quality of life in child and adolescent illness: Concepts, methods and findings. East Sussex, UK: Brunner-Routledge; 2001. Koot HM, Wallander JL, Eds: Quality of life in child and adolescent illness: Concepts, methods and findings. East Sussex, UK: Brunner-Routledge; 2001.
76.
go back to reference Janicke DM, Finney JW, Riley AW: Children's health care use: A prospective investigation of factors related to care-seeking. Med Care 2001, 39: 990–1001. 10.1097/00005650-200109000-00009PubMedCrossRef Janicke DM, Finney JW, Riley AW: Children's health care use: A prospective investigation of factors related to care-seeking. Med Care 2001, 39: 990–1001. 10.1097/00005650-200109000-00009PubMedCrossRef
77.
go back to reference Nunally JC, Bernstein IR: Psychometric Theory. 3rd edition. New York: McGraw-Hill; 1994. Nunally JC, Bernstein IR: Psychometric Theory. 3rd edition. New York: McGraw-Hill; 1994.
78.
go back to reference Eisner MD, Ackerson LM, Chi F, Kalkbrenner A, Buchner D, Mendoza G, Lieu T: Health-related quality of life and future health care utilization for asthma. Ann Asthma Allergy Immunol 2002, 89: 46–55.CrossRef Eisner MD, Ackerson LM, Chi F, Kalkbrenner A, Buchner D, Mendoza G, Lieu T: Health-related quality of life and future health care utilization for asthma. Ann Asthma Allergy Immunol 2002, 89: 46–55.CrossRef
79.
go back to reference Seid M, Varni JW, Segall D, Kurtin PS: Health-related quality of life as a predictor of pediatric healthcare costs: A two-year prospective cohort analysis. Health Qual Life Outcomes 2004, 2: 48. 10.1186/1477-7525-2-48PubMedCentralPubMedCrossRef Seid M, Varni JW, Segall D, Kurtin PS: Health-related quality of life as a predictor of pediatric healthcare costs: A two-year prospective cohort analysis. Health Qual Life Outcomes 2004, 2: 48. 10.1186/1477-7525-2-48PubMedCentralPubMedCrossRef
Metadata
Title
Health-related quality of life measurement in pediatric clinical practice: An appraisal and precept for future research and application
Authors
James W Varni
Tasha M Burwinkle
Mariella M Lane
Publication date
01-12-2005
Publisher
BioMed Central
Published in
Health and Quality of Life Outcomes / Issue 1/2005
Electronic ISSN: 1477-7525
DOI
https://doi.org/10.1186/1477-7525-3-34

Other articles of this Issue 1/2005

Health and Quality of Life Outcomes 1/2005 Go to the issue