Key messages
– We are very uncertain about the effects of patient navigator programmes compared with usual care on the quality of life of children and adolescents; the quality of life of their families; how many times they are admitted to hospital or go to the emergency department; how many school, day care, or college days they miss; and how much this costs.
– There is currently a lack of evidence to determine the effects of patient navigator programmes on children and adolescents with chronic diseases and further well-designed studies are recommended.
What is the issue?
The burden of chronic (long-lasting) diseases is growing in children and adolescents worldwide. Chronic diseases affect all aspects of a child's well-being including their growth; when they achieve milestones; how well they learn, remember, and use information; and how they manage and control their emotions. This can be carried into adult life. A child with a chronic disease also has a significant impact upon their family.
Health systems are searching for novel, low-cost ways to help improve chronic health outcomes for children and adolescents with chronic illnesses. One such option is the use of patient navigators.
What are patient navigators?
Patient navigators are trained medical or non-medical workers who help to guide and navigate patients and their families through complex medical systems by helping to co-ordinate patient care, give education, and work as an advocate for patients and their families. Patient navigators have been shown to help adults throughout their healthcare pathway. However, their benefits to children and adolescents with chronic diseases are unknown.
What did we want to find out?
We wanted to know if patient navigators are beneficial to children and adolescents with chronic diseases compared with usual care (that is, the routine care received by patients for prevention or treatment of diseases).
What did we do?
We search for studies comparing patient navigators with usual care to see if they improved the lives of children and adolescents with chronic diseases.
What did we find?
We found 17 studies enroling 2895 children and adolescents with illnesses such as asthma (a common lung condition that causes breathing difficulties), type 1 diabetes mellitus (high blood sugar), sickle cell disease (a disease that affects the shape of red blood cells), multiple medical needs, and conditions caused by being born too early in pregnancy. Studies varied widely in the duration, type, and frequency of patient navigator programmes as well as how long they were monitored for, which made it difficult to compare results.
The evidence is very uncertain about the effects of patient navigator programmes compared with usual care on the quality of life of children/adolescents or their carers; the number of times they were admitted to hospital or visited an emergency department; days of school/daycare/college missed; and use of healthcare facilities and resources.
What are the limitations of the evidence?
Our confidence in the evidence is very low because studies had poor methods, not all the studies provided data about everything that we were interested in, and they used different ways of measuring results.
How up to date is this evidence?
The evidence is current to 20 January 2023.
There is insufficient evidence at present to support the use of patient navigator programmes for children and adolescents with chronic diseases. The current evidence is based on limited data with very low-certainty evidence. Further studies are likely to significantly change these results.
Despite a substantial global improvement in infant and child mortality from communicable diseases since the early 1990s there is now a growing burden of chronic disease in children and adolescents worldwide, mimicking the trend seen in the adult population. Chronic diseases in children and adolescents can affect all aspects of their well-being and function with these burdens and their health-related consequences often carried into adulthood. Up to one third of disability-adjusted life years for children and adolescents globally are a result of chronic disease. This has profound implications for the broader family unit, communities, and health systems in which these children and young people reside.
Models of chronic care delivery for children and adolescents with chronic disease have traditionally been adapted from adult models. There is a growing recognition that children and adolescents with chronic diseases have a unique set of healthcare needs. Their needs extend beyond disease education and management appropriate to the developmental stage of the child, to encompass psychological well-being for the entire family and a holistic care approach focusing on the social determinants of health. It is for this reason that patient navigators have been proposed as a potential intervention to help fulfil this critical healthcare gap.
Patient navigators are trained medical or non-medical personnel (e.g. lay health workers, community health workers, nurses, or people with lived experience) who provide guidance for the patients (and their primary caregivers) as they move through complex (and often bewildering) medical and social systems. The navigator may deliver education, help to co-ordinate patient care, be an advocate for the patient (and their primary caregivers), or combinations of these. Patient navigators can assist people with a chronic illness (especially those who are vulnerable or from a marginalised population, or both) to better understand their diagnoses, treatment options, and available resources. As there is considerable variation in the purpose, design, and target population of patient navigator programmes, there is a need to systematically review and summarise the existing literature on the effectiveness of navigator programmes in children and young adults with chronic disease.
To assess the effectiveness of patient navigator programmes in children and adolescents with chronic diseases.
We searched the Cochrane Library and Epistemonikos up to 20 January 2023 for related systematic reviews using search terms relevant to this review. We searched CENTRAL, MEDLINE, Embase, CINAHL EBSCO, conference proceedings, the International Clinical Trials Register (ICTRP) Search Portal, and ClinicalTrials.gov for primary studies.
We included randomised controlled trials reporting the effect of patient navigator interventions on children and adolescents (aged 18 years or younger) with any chronic disease in hospital or community settings. Two review authors independently assessed the retrieved titles and abstracts, and where necessary, the full text to identify studies that satisfied the inclusion criteria.
Two review authors extracted data using a standard data extraction form. We used a random-effects model to perform a quantitative synthesis of the data. We used the I² statistic to measure heterogeneity amongst the studies in each analysis. We indicated summary estimates as mean differences (MD), where studies used the same scale, or standardised mean differences (SMD), where studies used different scales, with 95% confidence intervals (CI). We used subgroup and univariate meta-regression to assess reasons for between-study differences. We used the Cochrane RoB 1 tool to assess the methodological quality of the included studies. We used GRADE to assess the certainty of the evidence.
We included 17 studies (2895 randomised participants). All studies compared patient navigators with standard care. Most studies were at unclear or high risk of bias. Meta-analysis was undertaken only for those studies that had the same duration of patient navigator intervention and follow-up/reporting of outcome measures.
The evidence is very uncertain about the effects of patient navigator programmes compared with standard care on self-reported quality of life of children with chronic illness (SMD 0.63, 95% CI −0.20 to 1.47; I2 = 96%; 4 studies, 671 participants; very low-certainty evidence); parent proxy-reported quality of life (SMD 0.09, 95% CI −2.21 to 2.40; I2 = 99%; 2 studies, 309 participants; very low-certainty evidence); or parents' or caregivers' quality of life (SMD −1.98, 95% CI −4.13 to 0.17; I2 = 99%; 3 studies, 757 participants; very low-certainty evidence). It is uncertain whether duration of patient navigator intervention accounts for any of the variances in the changes in quality of life.
The evidence is very uncertain about the effects of patient navigator programmes compared with standard care on the number of hospital admissions (MD −0.05, 95% CI −0.34 to 0.23; I2 = 99%; 2 studies, 381 participants; very low-certainty evidence) and the number of presentations to the emergency department (MD 0.06, 95% CI −0.23 to 0.34; I2 = 98%; 2 studies, 381 participants; very low-certainty evidence). Furthermore, it is unclear whether patient navigator programmes reduce the number of missed school days as data were sparse (2 studies, 301 participants).
Four studies (629 participants) reported data on resource use. However, given the variation in units of analysis used, meta-analysis was not possible (very low-certainty evidence). All studies reported cost savings or quality-adjusted life year improvement (or both) in the patient navigation arm.
No studies reported on adverse events (specifically, abuse of any type against the navigator, the patient, or their family members).