Instrument Development and Validation to Assess Care Barriers for Patients in Saudi Arabia with Oral Clefts.

Layla Khogeer,Abeer Basri,Osama Basri,Sara Madani,Narmin Helal,Azza A El-Houseiny

doi:10.3390/ijerph18073399

Abstract

The study objective was to construct and validate a tool to assess, measure, and evaluate the barriers and obstacles that patients with orofacial clefts (OFCs), and their families, face during treatment. The Effective Accessibility and Accommodation subscale, based on the translated Primary Care Assessment Survey and Primary Care Assessment Tool scales, was used as a reference for the questionnaire. A total of 165 parents from three main cleft referral centers in Saudi Arabia were interviewed. Questionnaire content validity was conducted by calculation of a content validity index for each item (I-CVI) as well as for the total scale (S-CVI). Reliability was tested using Cronbach’s alpha. Factor analysis and principal components analysis were performed to determine the factor structure of the instrument. The final questionnaire had nine items. Rating results showed both I-CVI and S-CVI scores of 1 and Cronbach’s alpha was 0.86. There were three factors (geographic accessibility, appointment availability and accessibility, and scheduling-related barriers) with eigenvalues above 1.00, which collectively accounted for 73% of the variance. In conclusion, this tool is valid and reliable to evaluate accessibility and barriers to care of patients with OFCs in Saudi Arabia.

Highlights

When we look into the literature, we find that there is a scarcity of epidemiological data on cleft lip and palate and other birth defects in many countries around the world
Our results showed that 76.4% were cleft lip and palate patients, 9.7% were cleft palate only patients, and 13.3%
When we look at this tool, we can see that the index seems to be both valid and reliable according to its high content validity index (CVI) score and Cronbach’s alpha score

Summary

Introduction

Orofacial clefts (OFCs) are major human birth defects that represent a significant public health burden [1]. When we look into the literature, we find that there is a scarcity of epidemiological data on cleft lip and palate and other birth defects in many countries around the world. This is despite many efforts made to document the frequency of such defects [2]. OFCs are considered the most common congenital facial malformation [3]. OFCs contribute substantially to long-term social difficulties, complications related to inadequate nutrition, feeding problems, and speech impairments [4,5]. The treatment is a long-term process starting soon after birth, and may continue well up to the end of the second decade of life—with multiple surgeries and long-term medical and dental care [6]

Objectives

Methods

Results

Discussion

Conclusion