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Survey of parent experiences in prenatal visits for infants with cleft lip and palate

Lead Physician: Matthew Greives, MD

Introduction:

As prenatal ultrasound technology has significantly improved over the past few decades, most cleft lips and/or palates are now diagnosed prenatally. This now gives the parent’s ample time to research the surgeons and cleft teams that will ultimately be caring for their child over the course of its childhood. Prenatal visits with the cleft surgeon are now the standard for patients expecting a child with a cleft. Because of this, parents often interview or “shop around” to find the surgeon, team, and hospital that best fits their needs. We proposed to assess by what metrics parents assess their surgeon and cleft teams, and how they make an informed decision for their future child’s care.

Background:

Cleft lip and palate remain one of the most common congenital malformations, with an incidence of 1:500 to 1:2000[1, 2]. These complex patients require a multidisciplinary team of plastic surgeons, nurses, otolaryngologists, speech therapists, orthodontists, and others to care for them over the course of their growth and development. This need for “teams” has led to the development of specialized cleft centers where all the specialists work together to provide improved care for the patient and their families.

As with most technology, prenatal ultrasound (US) has improved significantly in recent years[3-5]. While historically most parents were informed of their child having a cleft lip or palate at birth, it is now a rare occurrence for a parent to have this same surprise given to them in the delivery room. Prenatal US now accurately diagnoses the prevalence of cleft lip in almost all cases. Because of this transition, parents are now afforded time and opportunity to select their cleft surgeon and team. As historically has happened in pediatrics, expectant parents can now have a prenatal visit with their cleft surgeon and team. During this visit, they can ask many of their questions regarding the future care and surgeries involved for their expected child PRIOR to the child being born. They also “interview” the surgeon both in person and using social media and internet to obtain a better opinion about their choices.

Very little is known about the process that parents use to select the future cleft surgeon and team. Often, parents present to our clinic for a second opinion after seeing a previous team, and other seek a second opinion after talking with our team as well. Because we get no feedback on the ultimate choice for the cleft surgeon, accurate assessment of what informs a patient for their decision is extremely difficult.

Purpose:

The purpose of this study is to better understand the parent’s choice of cleft team and surgeon, including factors on why they chose the team that eventually treated their child.

Investigational Plan:

This study is based on a survey that will be administered to parents of children with cleft lip and/or palate. Using a survey monkey design, a survey will be created to allow parents to provide feedback on the factors that influenced their decision on which surgeon and cleft team that they ultimately chose for their child.

Parents will be contacted anonymously via established social media websites that are independently run by the parents themselves. The URL to the survey will be posted with a short description of the reason for the study. No mention of the University of Texas Health Sciences Center at Houston or the Cleft-Craniofacial team here at UTH will be provided. No surgeons or PI names will be provided to protect the anonymity of both the research team and the parents themselves. The patient population is national and not linked to any particular cleft team or hospital center.

Inclusion Criteria:

Any patient who had a prenatal consult with a cleft surgeon prior the birth of their infant will be considered for the study.

Exclusion:

Patients who did not have a prenatal visit with a cleft surgeon or cleft team prior the birth of their child with cleft lip and/or palate.

Data Collection:

No patient personal health information will be collected. No names or identifiers are used for any of the patients.
The questionnaire is attached for evaluation

Sample Size:

We estimate as sample size of approximately 100 patients will allow us to make an adequate generalization of the factors that influence a parent to choose a cleft surgeon and team.

Potential Benefits:

Participants will not obtain any direct benefit from their participation. This will benefit future cleft parents as surgeons and teams will be able to better provide them with the information that they need prior the birth of their child.

Potential Risk:

As no PHI is being collected, there is absolutely no risk of loss of confidentiality. Also as there is no direct contact with the parents or patients, there is no risk to their medical well-being.

Consent Procedures:

As there is no risk to the parents or patients, their completion of the study would signal their consent to participate. No verbal or written consent will be needed or offered.

Confidentiality:

As no PHI will be asked for or used for the collection of data, there is absolutely no risk to confidentiality for any of the parents or patients.

Cost/Payment:

There is not financial cost incurred to the parents or the patients themselves.

 

References:

Gundlach, K.K. and C. Maus, Epidemiological studies on the frequency of clefts in Europe and world-wide. J Craniomaxillofac Surg, 2006. 34 Suppl 2: p. 1-2.

Vanderas, A.P., Incidence of cleft lip, cleft palate, and cleft lip and palate among races: a review. Cleft Palate J, 1987. 24(3): p. 216-25.

Bronshtein, M., et al., Detection of cleft lip by early second-trimester transvaginal sonography. Obstet Gynecol, 1994. 84(1): p. 73-6.

Maarse, W., et al., Prenatal ultrasound screening for orofacial clefts. Ultrasound Obstet Gynecol, 2011. 38(4): p. 434-9.

Mink van der Molen, A.B., et al., Prenatal screening for orofacial clefts in the Netherlands: a preliminary report on the impact of a national screening system. Cleft Palate Craniofac J, 2011. 48(2): p. 183-9.


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