Evidence-based assessment/Quality of Life

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Overview

Quality of Life (QOL) refers to how well a person functions and enjoys their regular daily routines. QOL focuses on the positive aspects of functioning and wellness, in contrast to symptoms and scales that focus on the severity of problems. Patients often find that QOL is more important to them than symptom reduction. There are some well developed free scales for assessing QOL, as well as some commercially distributed ones. Some details about the best of the free options are included below.

Rationale

Steps to put into practice

The KIDSCREEN is an excellent free option for measuring quality of life, with youth, adolescent, and parent versions available, with lengths ranging from 10 to 52 items.^[1] It is available in several languages. It grew out of the work with the KINDL, which also is free, translated into multiple languages, and used extensively in pediatric psychology and medical research.

Annotated bibliography

Freeman, A. J., Youngstrom, E. A., Michalak, E., Siegel, R., Meyers, O. I., & Findling, R. L. (2009). Quality of life in pediatric bipolar disorder. Pediatrics, 123(3), e446-452. https://doi.org/10.1542/peds.2008-0841 .^[2] This paper benchmarks the decrease in parent-reported quality of life for youths with bipolar disorder compared to other mental health conditions and also to several other medical issues. Results show that mental health issues reduce quality of life a lot, with mood disorders being the worst of those included in the study.

Bullinger, M., Bullinger, M., & Ravens-Sieberer, U. (1995). Health related QOL assessment in children: A review of the literature. European Review of Applied Psychology, 45(4), 245-254.

Bullinger, M., Schmidt, S., Petersen, C., & Ravens-Sieberer, U. (2006). Quality of life—evaluation criteria for children with chronic conditions in medical care. Journal of Public Health, 14(6), 343-355. https://doi.org/10.1007/s10389-006-0066-0

Rajmil, L., Herdman, M., Fernandez de Sanmamed, M. J., Detmar, S., Bruil, J., Ravens-Sieberer, U., Bullinger, M., Simeoni, M. C., & Auquier, P. (2004). Generic health-related quality of life instruments in children and adolescents: a qualitative analysis of content. Journal of Adolescent Health, 34(1), 37-45. http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=14706404

Ravens-Sieberer, U., & Bullinger, M. (1998). Assessing health-related quality of life in chronically ill children with the German KINDL: First psychometric and content analytic results. Quality of Life Research, 7(5), 399-407.

Ravens-Sieberer, U., & Bullinger, M. (2000). KINDL: Questionnaire for Measuring Health-Related Quality of Life in Children and Adolescents.

Ravens-Sieberer, U., Erhart, M., Wille, N., Wetzel, R., Nickel, J., & Bullinger, M. (2006). Generic health-related quality-of-life assessment in children and adolescents: methodological considerations. Pharmacoeconomics, 24(12), 1199-1220.

Ravens-Sieberer, U., Gortler, E., & Bullinger, M. (2000). [Subjective health and health behavior of children and adolescents--a survey of Hamburg students within the scope of school medical examination]. Gesundheitswesen, 62(3), 148-155. http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=10815341

Ravens-Sieberer, U., Gosch, A., Rajmil, L., Erhart, M., Bruil, J., Power, M., Duer, W., Auquier, P., Cloetta, B., Czemy, L., Mazur, J., Czimbalmos, A., Tountas, Y., Hagquist, C., Kilroe, J., & Group, K. (2008). The KIDSCREEN-52 quality of life measure for children and adolescents: psychometric results from a cross-cultural survey in 13 European countries. Value in Health, 11(4), 645-658. https://doi.org/10.1111/j.1524-4733.2007.00291.x^[1]

Ravens-Sieberer, U., Holling, H., Bettge, S., & Wietzker, A. (2002). [Assessment of mental health and quality of life in the National Health Interview and Examination Survey for Children and Adolescents]. Gesundheitswesen, 64 Suppl 1, S30-35. http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=12870213 (Erfassung von psychischer Gesundheit und Lebensqualitat im Kinder- und Jugendgesundheitssurvey.)

Ravens-Sieberer, U., Redegeld, M., & Bullinger, M. (2001). Quality of life after in-patient rehabilitation in children with obesity. International Journal of Obesity, 25 Suppl 1, S63-65. http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=11466592

Wee, H. L., Lee, W. W., Ravens-Sieberer, U., Erhart, M., & Li, S. C. (2005). Validation of the English version of the KINDL generic children's health-related quality of life instrument for an Asian population--results from a pilot test. Quality of Life Research, 14(4), 1193-1200. http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=16041914

References

↑ ^1.0 ^1.1 Ravens-Sieberer, Ulrike; Gosch, Angela; Rajmil, Luis; Erhart, Michael; Bruil, Jeanet; Power, Mick; Duer, Wolfgang; Auquier, Pascal et al. (2008-07). "The KIDSCREEN-52 Quality of Life Measure for Children and Adolescents: Psychometric Results from a Cross-Cultural Survey in 13 European Countries". Value in Health 11 (4): 645–658. doi:10.1111/j.1524-4733.2007.00291.x. https://linkinghub.elsevier.com/retrieve/pii/S1098301510605426.
↑ Freeman, Andrew J.; Youngstrom, Eric A.; Michalak, Erin; Siegel, Rebecca; Meyers, Oren I.; Findling, Robert L. (2009-03-01). "Quality of Life in Pediatric Bipolar Disorder". Pediatrics 123 (3): e446–e452. doi:10.1542/peds.2008-0841. ISSN 0031-4005. https://publications.aap.org/pediatrics/article/123/3/e446/71775/Quality-of-Life-in-Pediatric-Bipolar-Disorder.

[:0-1] 1.0 ^1.1 Ravens-Sieberer, Ulrike; Gosch, Angela; Rajmil, Luis; Erhart, Michael; Bruil, Jeanet; Power, Mick; Duer, Wolfgang; Auquier, Pascal et al. (2008-07). "The KIDSCREEN-52 Quality of Life Measure for Children and Adolescents: Psychometric Results from a Cross-Cultural Survey in 13 European Countries". Value in Health 11 (4): 645–658. doi:10.1111/j.1524-4733.2007.00291.x. https://linkinghub.elsevier.com/retrieve/pii/S1098301510605426.

[2] Freeman, Andrew J.; Youngstrom, Eric A.; Michalak, Erin; Siegel, Rebecca; Meyers, Oren I.; Findling, Robert L. (2009-03-01). "Quality of Life in Pediatric Bipolar Disorder". Pediatrics 123 (3): e446–e452. doi:10.1542/peds.2008-0841. ISSN 0031-4005. https://publications.aap.org/pediatrics/article/123/3/e446/71775/Quality-of-Life-in-Pediatric-Bipolar-Disorder.

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