A critical evaluation of the content validity of patient-reported outcome measures assessing health-related quality of life in children with cancer: a systematic review

被引：15
作者：
Rothmund, Maria [1 ,2 ]
Meryk, Andreas [3 ]
Rumpold, Gerhard [1 ]
Crazzolara, Roman [3 ]
Sodergren, Samantha [4 ]
Darlington, Anne-Sophie [4 ]
Riedl, David [1 ,5 ]
机构：
[1] Med Univ Innsbruck, Univ Clin Psychiat II, Dept Psychiat Psychotherapy & Med Psychol, Innsbruck, Austria
[2] Univ Innsbruck, Inst Psychol, Innsbruck, Austria
[3] Med Univ Innsbruck, Dept Pediatrics 1, Innsbruck, Austria
[4] Univ Southampton, Sch Hlth Sci, Southampton, England
[5] Ludwig Boltzmann Inst Rehabil Res, Vienna, Austria
来源：
JOURNAL OF PATIENT-REPORTED OUTCOMES | 2023年 / 7卷 / 01期
关键词：
Patient-reported outcomes; Content validity; Questionnaire development; Pediatric oncology; Childhood cancer; Psychometrics; Patient-reported outcome measures; PEDIATRIC ONCOLOGY PATIENTS; BRAIN-TUMOR SURVIVORS; GENERIC CORE SCALES; PSYCHOMETRIC PROPERTIES; SELF-REPORT; PRO INSTRUMENTS; METHODOLOGICAL QUALITY; CONSTRUCT-VALIDITY; YOUNG-ADULTS; FOCUS GROUPS;
D O I：
10.1186/s41687-023-00540-8
中图分类号：
R19 [保健组织与事业（卫生事业管理）];
学科分类号：
摘要：
BackgroundWith increasing survival rates in pediatric oncology, the need to monitor health-related quality of life (HRQOL) is becoming even more important. However, available patient-reported outcome measures (PROMs) have been criticized. This review aims to systematically evaluate the content validity of PROMs for HRQOL in children with cancer.MethodsIn December 2021, a systematic literature search was conducted in PubMed. PROMs were included if they were used to assess HRQOL in children with cancer and had a lower age-limit between 8 and 12 years and an upper age-limit below 21 years. The COSMIN methodology for assessing the content validity of PROMs was applied to grade evidence for relevance, comprehensiveness, and comprehensibility based on quality ratings of development studies (i.e., studies related to concept elicitation and cognitive interviews for newly developed questionnaires) and content validity studies (i.e., qualitative studies in new samples to evaluate the content validity of existing questionnaires).ResultsTwelve PROMs were included. Due to insufficient patient involvement and/or poor reporting, the quality of most development studies was rated 'doubtful' or 'inadequate'. Few content validity studies were available, and these were mostly 'inadequate'. Following the COSMIN methodology, evidence for content validity was 'low' or 'very low' for almost all PROMs. Only the PROMIS Pediatric Profile had 'moderate' evidence. In general, the results indicated that the PROMs covered relevant issues, while results for comprehensiveness and comprehensibility were partly inconsistent or insufficient.DiscussionFollowing the COSMIN methodology, there is scarce evidence for the content validity of available PROMs for HRQOL in children with cancer. Most instruments were developed before the publication of milestone guidelines and therefore were not able to fulfill all requirements. Efforts are needed to catch up with methodological progress made during the last decade. Further research should adhere to recent guidelines to develop new instruments and to strengthen the evidence for existing PROMs.
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页数：26
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共 120 条
[1]   Psychometric properties of the DISABKIDS Chronic Generic Module (DCGM-37) when used in children undergoing treatment for cancer [J].
af Sandeberg, Margareta ;
Johansson, Eva M. ;
Hagell, Peter ;
Wettergren, Lena .
HEALTH AND QUALITY OF LIFE OUTCOMES, 2010, 8
[2]   Development of an international standard set of patient-centred outcome measures for overall paediatric health: a consensus process [J].
Alguren, Beatrix ;
Ramirez, Jessily P. ;
Salt, Matthew ;
Sillett, Nick ;
Myers, Stacie N. ;
Alvarez-Cote, Albie ;
Butcher, Nancy J. ;
Caneo, Luiz F. ;
Cespedes, Jaime A. ;
Chaplin, John E. ;
Ng, Kee Chong ;
Garcia-Garcia, Juan J. ;
Hazelzet, Jan A. ;
Klassen, Anne F. ;
Turquetto, Aida Luiza R. ;
Mew, Emma J. ;
Morris, Michael ;
Offringa, Martin ;
O'Meara, Matthew ;
Papp, James M. ;
Rodrigo, Carlos ;
Switaj, Timothy L. ;
Valencia Mayer, Catalina ;
Jenkins, Kathy J. .
ARCHIVES OF DISEASE IN CHILDHOOD, 2021, 106 (09) :868-876
[3]   Quality of life of pediatric oncology patients: Do patient-reported outcome instruments measure what matters to patients? [J].
Anthony, Samantha J. ;
Selkirk, Enid ;
Sung, Lillian ;
Klaassen, Robert J. ;
Dix, David ;
Klassen, Anne F. .
QUALITY OF LIFE RESEARCH, 2017, 26 (02) :273-281
[4]   Considering quality of life for children with cancer: a systematic review of patient-reported outcome measures and the development of a conceptual model [J].
Anthony, Samantha J. ;
Selkirk, Enid ;
Sung, Lillian ;
Klaassen, Robert J. ;
Dix, David ;
Scheinemann, Katrin ;
Klassen, Anne F. .
QUALITY OF LIFE RESEARCH, 2014, 23 (03) :771-789
[5]   Cross-cultural Validation of the Pediatric Quality of Life Inventory™ 4.0 (PedsQL™) generic core scale into Arabic Language [J].
Arabiat, Diana ;
Elliott, Barbara ;
Draper, Peter ;
Al Jabery, Mohammad .
SCANDINAVIAN JOURNAL OF CARING SCIENCES, 2011, 25 (04) :828-833
[6]   "Not Just Little Adults": Qualitative Methods to Support the Development of Pediatric Patient-Reported Outcomes [J].
Arbuckle, Rob ;
Abetz-Webb, Linda .
PATIENT-PATIENT CENTERED OUTCOMES RESEARCH, 2013, 6 (03) :143-159
[7]   The European DISABKIDS project: Development of seven condition-specific modules to measure health related quality of life in children and adolescents [J].
Baars R.M. ;
Atherton C.I. ;
Koopman H.M. ;
Bullinger M. ;
Power M. ;
Bullinger M. ;
Schmidt S. ;
Petersen C. ;
Koopman H. ;
Baars R. ;
Hoare P. ;
Power M. ;
Atherton C. ;
Simeoni M.C. ;
Tsanakas J. ;
Karagianni P. ;
Hatziagorou E. ;
Vidalis A. ;
Chaplin J.E. ;
Quittan M. ;
Schuhfried O. ;
Hachemian N. ;
Thyen U. ;
Müller-Godeffroy E. .
Health and Quality of Life Outcomes, 3 (1)
[8]   Symptom Assessment in Pediatric Oncology How Should Concordance Between Children's and Parents' Reports Be Evaluated? [J].
Baggott, Christina ;
Cooper, Bruce A. ;
Marina, Neyssa ;
Matthay, Katherine K. ;
Miaskowski, Christine .
CANCER NURSING, 2014, 37 (04) :252-262
[9]   Developing the Scale for Quality of Life in Pediatric Oncology Patients Aged 13-18: Adolescent Form and Parent Form [J].
Bektas, Murat ;
Kudubes, Asli Akdeniz ;
Ugur, Ozlem ;
Vergin, Canan ;
Demirag, Bengu .
ASIAN NURSING RESEARCH, 2016, 10 (02) :106-115
[10]   Systematic review: measurement properties of patient-reported outcome measures evaluated with childhood brain tumor survivors or other acquired brain injury [J].
Bull, Kim S. ;
Hornsey, Samantha ;
Kennedy, Colin R. ;
Darlington, Anne-Sophie E. ;
Grootenhuis, Martha A. ;
Hargrave, Darren ;
Liossi, Christina ;
Shepherd, Jonathan P. ;
Walker, David A. ;
Morris, Christopher .
NEURO-ONCOLOGY PRACTICE, 2020, 7 (03) :277-287
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