Integrative review and evaluation of quality of life related instruments in pediatric urology. Issue 4 (August 2021) - Raveendran, Lucshman
Summary: Introduction: While most paediatric urologists consider patients' quality of life (QOL) important, few actually measure this outcome. Our goal was to assess instruments used in the pediatric urology QOL literature, specifically looking at whether they captured QOL. Methods: We searched MEDLINE and EMBASE for articles with a self-described primary outcome of measuring QOL. All validated QOL instruments in the papers were analyzed by QOL instrument content experts. Instruments were classified as focusing on: Functioning or QOL (Table). The term Functioning focuses on performing activities. QOL captures person's perceptions about their position in life, informed by circumstances, functioning and conditions. QOL instruments were further subdivided into generic QOL, health-related QOL (HRQOL) and disease-specific HRQOL. Only direct patient self-reported QOL instruments were then assessed, since they are the most clinically useful, reliably assessing patients' own perception of their QOL. Results: Forty-three publications met inclusion criteria (published 1999–2019). Most common conditions included urinary incontinence (16, 37.2%) and kidney transplantation (12, 27.9%). Overall, 22 unique instruments purporting to measure QOL were identified. Looking at the concepts measured by each instrument, nine instruments (40.9%) assessed Functioning. Nine instruments (40.9%) measured a combination of Functioning and QOL. Only the remaining 4 instruments (18.2%) assessed strictly QOL. The 13 instruments assessing any QOL focused on generic QOL (n = 4), HRQOL (n = 3) and disease-specific HRQOL (n = 6). Of the subset of four instruments assessing strictly QOL, and not Functioning, all had patient self-reported versions available: two generic QOL instruments (KINDL, KIDSCREEN), one generic HRQOL (DISABKIDS), and one disease-specific HRQOL (QUALAS). Thirteen of 43 studies (30.2%) employed more than one instrument. Thirty-eight studies (88.4%) used an instrument measuring Functioning, with 19 (44.1%) measuring only Functioning, not QOL at all. Twenty-four studies (55.8%) used an instrument measuring actual QOL, although 17 (39.5%) used a combined Functioning/QOL instrument. Only nine (20.9%) used a strictly QOL instrument (strictly HRQOL instruments: 4.7%). Discussion: We present encouraging evidence of sustained interest in QOL research in pediatric urology and identify areas needing improvement. Selecting appropriate QOL tools requires a working knowledge of their various underlying meanings and purposes. Whether it adequately assess QOL must be considered. We discuss strengths and weaknesses of instruments and a practical approach to QOL instrument selection. Conclusion: Much of pediatric urology is grounded in improving QOL. Unfortunately, most studies published to date focus on Functioning, rather than young people's perception-based QOL. Future QOL studies should ideally employ validated instruments capturing patient-reported QOL. Summary Table Classification and distribution of instruments and pediatric urology studies assessing quality of life as the primary outcome (1999–2019). Table Outcome Category Description Illustration Instruments (n = 22) Studies∗ (n = 43) Functioning (activities, participation, environmental and personal contextual factors) WHO. International Classification of Functioning, Disability and Health: ICF. Geneva: 2001. [3 ] Assesses individuals' task performance pertaining to physical, social and psychological activities. It includes day-to-day tasks such as ambulation, performance at school, concentration, communication, friendships, symptoms, etc. It is assessed with a functional ability, or task-based, questionnaire or test (e.g. ability to walk up stairs, having friends outside of work or school, being able to focus at school, sense of incomplete emptying after voiding). 9 (40.9%) 38 (88.4%) Quality of Life The WHOQOL Group. The World Health Organization Quality Of Life Assessment (WHOQOL): position paper from the World Health Organization. Soc Sci Med 1995;41:1403–9 [4 ] Assesses individuals' subjective perceptions about their position in life, in the context of their culture and value systems, their goals, expectations, standards and concerns. It includes domains that are important to them, including, but not exclusive to their goals, relationships, health state, functioning and life more broadly. Can be generic quality of life (QOL: overall perceptions), heath-related QOL (HRQOL: perceptions of impact that health status has on quality of life) or disease-specific HRQOL (perceptions of impact that a particular health condition has on quality of life). It is assessed with a quality of life questionnaire. 4 (18.2%) 9 (20.9%) Combined Functioning & Quality of Life Questionnaires that included a mixed items, or questions, assessing areas pertaining to both functioning and QOL, with at least 20% of the items corresponding to either category. 9 (40.9%) 17 (39.5%) Note: ∗Percentages add up to more than 100% since some studies used more than one instrument.