Psychometric Properties of FIS-SF Can Determine Impact on Quality of Life for Families of Children With OFC

ACPAACPA News

  • Short-form Family Impact Scale achieves higher response rate
  • Families with older children report higher negative impact on quality of life
  • FIS data can help improve care and treatment delivery to benefit entire family

CHAPEL HILL, N.C. / Nov. 10, 2020–The short-form Family Impact Scale (FIS-SF) questionnaire is a valid and reliable tool to measure the impact that a child’s orofacial cleft (OFC) may have on the child’s family and their quality of life, according to a recent study. The results were published in the November 2020 issue of The Cleft Palate-Craniofacial Journal (CPCJ).

OFCs are among the most common visible birth defects. In Australia, where the study was conducted, the incidence of cleft lip and palate (CL/P) is 1.2 per 1,000 births and 1.4 per 1,000 births for cleft palate (CP). Prolonged and extensive treatment and rehabilitation, from birth until adulthood, can affect a child’s health, psychosocial well-being, and quality of life. In addition, having a child with an orofacial condition can affect the quality of life and daily functioning of the child’s family.

”The FIS was initially developed to determine the impact of a child’s oral-facial condition on family life and well-being, specifically the influence on parent and family activities, parental emotions, family conflict, and family finances. However, a primary limitation of this tool was its length,” said Cailin M. Agnew, lead researcher. “By reducing the number of questions—from 14 to eight—the short-form FIS seems to have good psychometric properties including acceptable reliability, validity, and responsiveness.”

The study was conducted from August 2015 to July 2016 using a consecutive clinical case series of children presenting for assessment at the Cleft Clinic at a major pediatric tertiary referral hospital in Sydney, Australia. Parents/caregivers were invited to participate in the study by completing the FIS-SF questionnaire on the day of the child’s appointment.

Two hundred fourteen parents completed the questionnaire, with only one parent declining to participate in the study. The mean age of the children was 11.1 years, and nearly two-thirds were male. CL/P cases comprised just over half of the sample, with CP cases being the next most common, at one-fifth. Most questionnaires (95.0%) were completed by the child’s mother.

While the overall results indicated that OFC does affect a family’s quality of life, the impact was greater among families of older children. This may be due to the fact that older children must cope with facial differences in addition to typical adolescent concerns about appearance. The researchers noted that additional studies are needed to examine how family impact changes as the child ages.

“FIS data provide unique information that can be used to supplement clinical measures, improve treatment delivery, and identify at-risk groups,” Agnew noted. “By incorporating this information into clinical practice and research, we can better serve the patients and their families, and develop interventions that care for the entire family.”

“I found it interesting that the number of surgical operations had no impact on the family’s quality of life ratings. Similarly, there was no observed difference in the FIS-SF scores between families living in metropolitan regions to those living in rural regions. These observations provide strong support for the existence of the OFC itself as the primary factor influencing the quality of life for families. This further underscores the importance of treating the child using a holistic approach, as suggested by the authors,” said Jamie L. Perry, PhD, CCC-SLP, editor of The Cleft Palate-Craniofacial Journal.

To learn more about the American Cleft Palate-Craniofacial Association and cleft and craniofacial conditions, please visit acpa-cpf.org.

About the American Cleft Palate-Craniofacial Association
The American Cleft Palate-Craniofacial Association (ACPA) is a nonprofit 501(c)(3) association of interested individuals and health care professionals who treat and/or perform research on oral cleft and craniofacial conditions. Since 1943, ACPA has worked to optimize outcomes for individuals with oral cleft and craniofacial conditions through education, support, research, advocacy and interdisciplinary team care. ACPA also provides information to affected individuals and families and seeks to educate the public about facial differences through its ACPA Family Services program. For more information, please visit acpa-cpf.org.