STD diagnosis and treatments. They are likely to have to cope with the effects of MST for the rest of their lives. The health care professionals responsible for the treatment, follow-up and rehabilitation of patients with MST-related diseases will have to be prepared for the needs of the growing population of these patients and will require access to appropriate medical information and ongoing education. The study also clearly indicated that it would be beneficial to review the health care system and the policies adopted in the past to deal with patients with MST-related diseases. Although it will be difficult, such reappraisal should be performed.
There was also clear evidence that the burden of the disease did not end after treatment was completed, as some participants suffered both short and long-term complications and were still receiving various treatments. The long-term results should also be a concern of the medical professionals responsible for the treatment of the disease.
Limitations
-----------
The small sample size of this study and its single center design limited our ability to generalize the results and conclusions. However, the data are representative of a population in a developing country. In addition, the age range of the participants is wide and therefore the sample is representative of children from the first year of life to adulthood, which increases the applicability of the findings to this study population.
Conclusion
==========
Although MST-related diseases are complex and serious, children can be treated and return to normal life, as MST is relatively new. Therefore, early diagnosis and good monitoring are important. Although the study used multiple perspectives of the lived experience of MST-related diseases, it should be interpreted in the light of these limitations.
We wish to thank all the MST patients and their families for the contribution to this study and for sharing their experiences. We would also like to thank all medical professionals in the Poursina Hospital, Isfahan, Iran, especially the pediatric residents and specialists for their kind cooperation. The project was supported by the Isfahan University of Medical Sciences, Isfahan, Iran (grant No. 396043).
**Disclosure**
The authors report no conflicts of interest in this work.
{#f1-ppa-6-1055}
######
Demographic characteristics of the patients
Variable Mean
-------------------------------------------------------------------------------------------- --------
**Age (years)** 8 ± 4
**Duration of disease (months)** 32 ± 32
**Number of clinical problems experienced** 9 ± 5
**No. of medications used per patient[\*](#tfn1-ppa-6-1055){ref-type="table-fn"}** 2 ± 2
**No. of patients using injections[\*](#tfn1-ppa-6-1055){ref-type="table-fn"}** 25 ± 7
**Use of hearing aids[\*](#tfn1-ppa-6-1055){ref-type="table-fn"}** 16 ± 7
**Duration of the surgical procedure (min)** 25 ± 20
**Note:**
All patients had experienced these conditions.
######
Sociodemographic characteristics of the mothers
Variable Number
---------------------------- --------
**Marital status**
Married 20
Single 6
Divorced 1
Widowed 1
**Educational level**
High school diploma 1
Diploma 5
College 10
University degree 6
**Occupational status**
Employed 17
Unemployed 6
**Father's occupation**
Farmer 3
Businessman 4
**Paternal smoking**
Yes 8
**Use of medicines**
Yes 20
**Use of antibiotics**
Yes 22
**Use of topical ointments**
Yes 14
**Note:** The highest educational level of the mothers was considered.
######
Sociodemographic characteristics of the fathers
Variable Number
---------------------------- --------
**Marital status**
Married 20
Single 6
Divorced 1
Widowed 1
**Educational level**
Diploma 7
High school diploma 1
College degree 7
University degree 3
**Occupational status**
Employed 15
Unemployed 5
**Paternal smoking**
Yes 8
**Note:** The highest educational level of the fathers was considered.
######
Reported disease problems and the number of persons taking care of each patient[\*](#tfn4-ppa-6-1055){ref-type="table-fn"}
------------------------------------------------------------------------------------------------------------------------------------------------
Patient no Age (years) Sex Disease Duration of disease No. of medications Persons taking care of the patient
------------ ------------- ----- -------------------------------- --------------------- -------------------- ------------------------------------
1 15 F Hearing loss 7 2 Mother and father
2 11 M Hearing loss 6 3 Father
3 16 M Cleft lip 4 6 Mother, brother
4 13 M Chronic orofacial pain 2 1 Mother
5 17 F Cleft lip 4 3 Mother
6 20 M Hearing loss 4 3 Mother, father, sister and brother
7 10 M Chronic otitis media 7 5 Mother, father, sister and brother
8 5 F Cleft lip 4 1 Mother
9 14 F Dysphagia 6 2 Mother and father
**Note:** The maximum time of disease was considered.
######
Reported complications and the number of persons taking care of each patient[\*](#tfn6-ppa-6-1055){ref-type="table-fn"}
-------------------------------------------------------------------------------------------------------------------------------------------------
Complications No. of complications Persons taking care of the patient
---------------------------------------- ---------------------- ------------------------------------ -------------------------------------------
Pneumonia 5 1 Father, sister, brother and nanny
Congestive heart failure 6 3 Mother, father, sister, brother, and\
nurse
Cardiomyopathy 4 1 Father, brother and nanny
Thrombosis 2 1 Father and mother
Bleeding 5 3 Mother, father, brother, and nurse
Liver problems 1 1 Father and brother
Hair loss 1 1 Father
Dental problems 1 1 Father
Malnutrition 1 1 Father
Severe headache 1 1 Mother and father
Motor development problems 1 1 Mother
Cervical spine problems 1 1 Mother
Cerebral palsy 1 1 Mother
Motor function disorders 1 1 Mother
Mental retardation 1 1 Mother
Hemicrania 1 1 Mother and nurse
Anemia 1 1 Mother
Acne 1 1 Mother
Cataracts 1 1 Mother
Asthma 1 1 Mother
Hematuria 1 1 Mother
Hypothyroidism 1 1 Mother
Vertigo 1 1 Mother
Stomatitis 1 1 Mother
Neurological deficits 1 1 Mother
Anorexia 1 1 Mother
Abdominal pain 1 1 Mother
Arthritis 1 1 Mother
Scoliosis 1 1 Mother
Hearing impairment 1 1 Mother and father
######
Surgical procedures used to treat the disorder and the duration of surgery
-----------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------
Treatment Duration of treatment (hours)
-------------------- ------------------------------- ------------------------------------------- ------------------- ------------------ ------------------- ------------------ ------------------ --------
Dental problems 0 1 0 1 1 1 1 0
Craniofacial growth 0 1 0 1 1 1 1 0
Hairline surgery 1 0 1 0 1 1 1 0
Dysphagia 0 1 0 1 1 1 1 0
Other surgeries 1 1 0 1 1 1 1 0
Total 1[\*](#tfn7-ppa-6-1055){ref-type="table
