. Author manuscript; available in PMC: 2021 Aug 21.

Published in final edited form as: Am J Med Genet A. 2020 Nov 27;185(2):413–423. doi: 10.1002/ajmg.a.61977

Table 5:

Categories of parental comments regarding concerns, challenges, and areas of improvement of care for children with MFDM.

Development	Overall	35/45 (77.8%)
	Communication	23/35 (65.7%)
	Developmental delays	13/35 (36.1%)
Health	Overall	17/45 (40.0%)
	Feeding difficulties	7/17 (35.3%)
	Neurologic problems	5/17 (29.4%)
	Hearing problems	4/17 (23.5%)
Uncertain future	Overall	12/45 (26.7%)
Challenges in caring for their child	Overall	13/43 (30.2%)
Improved support in caring for their child	Overall	21/28 (75%)
	Improved provider expertise	8/21 (38.1%)
	Improved provider communication	4/21 (19.1%)
	Improved health care for their child	6/21 (28.6%)
Improved support for development	Overall	13/28 (46.4%)

MFDM = mandibulofacial dysostosis with microcephaly