Oral Health-Related Quality of Life among Patients with Beta-Thalassemia Major in Ahvaz

Background and Objectives The present study examined the oral health-related quality of life in patients with thalassemia major in Khuzestan province. Subjects and Methods This was a descriptive analytical study. The case group included 120 patients suffering from thalassemia major disease who presented to Shafa Hospital in Ahvaz city in 2021, and the control group consisted of 120 healthy people who were either companions of the patients or their family members. The data collection tools were two standard questionnaires related to dry mouth and a questionnaire dedicated to oral heal-related quality of life. Results There was a significant difference between patients with beta-thalassemia major and healthy people in terms of their mean overall score of oral health-related quality of life and its dimensions (except for physical disability) (P<0.05). There was no significant difference between the two groups in terms of the mean score of physical disability (P>0.05). A significant difference was observed between the two groups in terms of the mean score of functional limitation in an age-dependent manner (P<0.05). Finally, the two groups were significantly different in terms of the mean score of physical disability as far as age and dry mouth were concerned (P<0.05). Conclusion According to the results obtained from the present study, appropriate psychological measures and strategies should be implemented to improve the oral health-related quality of life in patients with beta-thalassemia major.


Extended Abstract
Introduction ral health refers to absence of any chronic oral pain, oral and pharyngeal cancers, oral soft tissue lesions, birth defects such as cleft lip and palate, and other diseases that affect the oral and dental system as well as facial tissues.According to recent theories, complete oral health cannot be attributed solely to the absence of disease or oral dysfunction.Rather, it should also take into account the negative effects of oral conditions on social life and the positive effects of selfconfidence resulting from the appearance of the teeth and face.Dental and periodontal diseases such as tooth decay and periodontal diseases are very common and have not only physical but also economic, social, and psychological effects.These diseases seriously impair the quality of life in a large number of patients and affect various aspects of life such as oral function, facial appearance, and social relationships.According to the definition of the World Health Organization, quality of life refers to an individual's assessment of their living conditions based on cultural criteria.Personal evaluation of the impact of functional, psychological, social, and pain experiences related to oral problems on an individual's life is defined as "oral healthrelated quality of life".
Measuring oral health-related quality of life (OHRQoL) is one of the necessities in epidemiological and clinical studies of communities to obtain accurate information on promoting health and planning for disease prevention.Developed by Spencer and Slade in 1994, the Oral Health Impact Profile questionnaire is one of the most reliable tools available for assessing the OHRQoL in order to measure the effects of oral disorders on people's health based on their judgments.According to Locker (the founder of OHRQoL), the Oral Health Impact Profile (OHIP) is a very suitable tool for encompassing all aspects of OHRQoL compared to other similar questionnaires.Therefore, the World Health Organization has also included OHIP in its working models.The Oral Health Impact Profile-14 Persian version (OHIP-14Per) was developed by the World Health Organization in 2013.This tool first collects demographic information such as age and gender, and then evaluates a wide range of oral and dental health components.The whole or some parts of this questionnaire have been used in numerous previous studies in Iran, and its validity and reliability have been confirmed.
Iran is geographically located in the thalassemia belt.The prevalence of thalassemia ranges from 1 to 10 percent (with an average of 5.4 percent) in different parts of Iran.According to statistics, the number of major thalassemia patients in Iran is over 2,000.Some significant manifestations of thalassemia are pink oral manifestations and bone deformities of the skull and face.Skeletal abnormalities occur as a result of hypertrophy and expansion of the bone marrow due to ineffective erythropoiesis.The typical facial appearance includes frontal prominence, prominent zygomatic bones, depression of the nasal bridge, excessive growth of both jaws, and malocclusion.Patients with thalassemia are at risk for dental caries, oral infections, and bacteremia.There are few studies available to investigate the relationship between thalassemia and periodontal diseases, dental caries, and dry mouth.

Methods
This was a descriptive-analytical study conducted on two groups: individuals with beta-thalassemia major and otherwise healthy individuals.The statistical population of the case group consisted of all patients with beta-thalassemia major referring to Shafa Hospital of Ahvaz in 2022.The healthy group included either family members or neighbors of the patients and were matched with them based on age, gender, occupation, and education.After obtaining ethical approval (IR.AJUMS.REC.1400.419), the researcher visited Shafa Hospital in Ahvaz and identified the patients and healthy individuals according to the inclusion criteria, and those who were accessible were included in the study.Initially, the participants were briefed on the study objectives, and then they were asked to complete the informed consent form if they were willing to participate in the study.Afterwards, they were given a questionnaire to complete.In cases where a patient or healthy individual had a question about the questionnaire, they could ask the researcher.After the questionnaires were completed, they were handed over to the researcher.
The data collection tool included two standard questionnaires.The first questionnaire was related to dry mouth and consisted of 10 questions.In case at least 5 questions received a positive answer, the dry mouth condition was confirmed.The second questionnaire addressed oral health-related quality of life.This questionnaire had already been translated into Persian by Motamedi and colleagues, and its reliability and validity were confirmed.This questionnaire has 14 questions scored on a 5-point Likert scale (never=1, rarely=2, sometimes=3, often=4, and always=5).It encompasses 7 dimensions of oral health-related quality of life, namely functional limitation, physical pain, psychological discomfort, physical disability, psychological disability, social disability, and handicap, each having two questions.All questions in this questionnaire are negatively worded.Therefore, the score of all questions is inversely related to good oral conditions.The minimum score of the questionnaire is 14 and the maximum is 70, with a higher score indicating better oral health-related quality of life.

Results
There was a significant difference between patients with beta-thalassemia major and healthy people in terms of the mean overall score of oral health-related quality of life and its dimensions (except for physical disability) (P<0.05).There was no significant difference between the two groups in terms of the mean score of physical disability (P>0.05).A O significant difference, however, was observed between the two groups regarding the mean score of functional limitation in an age-dependent manner (P<0.05).Another significant difference was found between the mean scores of physical disability in patients with beta-thalassemia major and healthy people in terms of age and dry mouth (P<0.05).Finally, there was a significant difference between the mean disability scores in the two groups regarding gender, educational attainment, smoking, and dry mouth (P<0.05).

Conclusion
According to the results of the present study, appropriate psychological interventions and strategies should be implemented to improve the oral health-related quality of life in patients with beta-thalassemia major.Given the high prevalence of oral and dental diseases in the community, especially in individuals with betathalassemia major, and the psychological, social, and economic burdens associated with them, necessary planning should be done at a macro level for disease prevention, care, and oral health.

Ethical Considerations Compliance with ethical guidelines
This study was part of a dissertation in the School of Dentistry with the ethics committee number IR.AJUMS.REC.1400.419 in Ahvaz Jundishapur university of medical sciences in Ahvaz.