The concept of health-related quality of life (HRQOL) and its determinants have evolved since the 1980s to encompass those aspects of overall quality of life that can be clearly shown to affect health—either physical or mental.
On the individual level, HRQOL includes physical and mental health perceptions (e.g., energy level, mood) and their correlates—including health risks and conditions, functional status, social support, and socioeconomic status.
On the community level, HRQOL includes community-level resources, conditions, policies, and practices that influence a population’s health perceptions and functional status.
On the basis of a synthesis of the scientific literature and advice from its public health partners, CDC has defined HRQOL as “an individual’s or group’s perceived physical and mental health over time. The construct of HRQOL enables health agencies to legitimately address broader areas of healthy public policy around a common theme in collaboration with a wider circle of health partners, including social service agencies, community planners, and business groups.
HRQOL questions have become an important component of public health surveillance and are generally considered valid indicators of unmet needs and intervention outcomes. Self-assessed health status is also a more powerful predictor of mortality and morbidity than many objective measures of health.
HRQOL measures make it possible to demonstrate scientifically the impact of health on quality of life, going well beyond the old paradigm that was limited to what can be seen under a microscope.
The emphasis on health-related quality of life (HRQOL) outcomes is increasing, along with an emphasis on evidence based medicine. However, there is a notable paucity of validated HRQOL instruments for the pediatric population.
Three top pediatric neurosurgical journals were reviewed for the decade from 2005 to 2014 for clinical studies of pediatric neurosurgical procedures that report HRQOL outcomes. Similar studies in the peer-reviewed journal Pediatrics were also used as a benchmark. Publication year, level of evidence, and HRQOL outcomes were collected for each article.
A total of 31 HRQOL studies were published in the pediatric neurosurgical literature over the study period. By comparison, there were 55 such articles in Pediatrics. The number of publications using HRQOL instruments showed a significant positive trend over time for Pediatrics (B = 0.62, p = 0.02) but did not increase significantly over time for the 3 neurosurgical journals (B = 0.12, p = 0.5). The authors identified a total of 46 different HRQOL instruments used across all journals. Within the neurosurgical journals, the Hydrocephalus Outcome Questionnaire (HOQ) (24%) was the most frequently used, followed by the Health Utilities Index (HUI) (16%), the Pediatric Quality of Life Inventory (PedsQL) (12%), and the 36-Item Short Form Health Survey (SF-36) (12%). Of the 55 articles identified in Pediatrics, 22 (40%) used a version of the PedsQL. No neurosurgical study reached above Level 4 on the Oxford Centre for Evidence-Based Medicine (OCEBM) system. However, multiple studies from Pediatrics achieved OCEBM Level 3, several were categorized as Level 2, and one reached Level 1.
The frequency of studies using HRQOL outcomes in pediatric neurosurgical research has not increased over the past 10 years. Within pediatric neurosurgery, high-quality studies and standardization are lacking, as compared with contemporary studies in Pediatrics. In general, although the HOQ, HUI, PedsQL, and SF-36 instruments are emerging as standards in pediatric neurosurgery, even greater standardization across the specialty is needed, along with the design and implementation of more rigorous studies 1).
Patients with intracranial tumors suffer from decreased HRQoL and suicidal ideation (SI) regardless of histopathology. SI is associated with higher Beck Depression Inventory (BDI) scores, but not evident depression (BDI ≥ 18). Thus, patients should be screened specifically and regularly. Lower HRQoL and greatest prevalence of SI at 6 months may help clinicians to find the right time for careful monitoring of patients at risk 2).
HRQOL represents an important outcome measure in mTBI/concussion clinical practice and research. The evidence shows that a small but important proportion of patients have diminished HRQOL up to a year or longer post-injury. Further study on this topic is warranted to determine the typical longitudinal progression of HRQOL after pediatric concussion 3).