Preventive health care for children with genetic conditions. Providing a primary care medical home

OVERALL RATING Good

STRENGTHS Useful for those with minimal experience and understanding of genetic conditions (eg, how they present, their effects on children and their families); the authors indicate that parents are experts about their children and demonstrate that parental opinions or worries are among the most reliable developmental screening tools when compared with a variety of more formal developmental tools, and have a comparable degree of specificity and sensitivity

WEAKNESSES It is framed within the context of the United States, so its focus is on various aspects of the US health care system and ways of working within its context

AUDIENCE Health care practitioners, primary health care teams, and undergraduate and graduate students

This book was designed to provide a broad perspective about children with developmental disabilities.

Although this book promotes preventive management for children with genetic and developmental disorders, the focus seems to be on compliance rather than adherence. The authors indicate that children with chronic diseases are frequently more costly to the health care system and that special considerations might be needed to protect families from loss of health insurance or exclusion from services. This is not dissimilar from the context of the health care system in Canada in which children labeled with chronic diseases or genetic conditions are frequently unable to obtain the needed medications and services because of their parents’ inability to obtain appropriate health care insurance at an affordable rate.

Having lived with a child with a genetic condition defined as a chronic disease, I encourage readers to consider the information thoughtfully, as it might not reflect their experience with children with genetic conditions. I also encourage health care practitioners to carefully read the answers provided by the parents, then consider how best to integrate the learnings into the management.

This book could be used as a tool for enhancing awareness of genetic conditions and their management with undergraduate and graduate students, as well as health care practitioners in Canada.

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