Pros and Cons of Telemedicine for Inherited Metabolic Disorders in a Developing Country During the COVID-19 Pandemic

Yekedüz, Merve Koç; Doğulu, Neslihan; Kara, İlknur Sürücü; Öncül, Ümmühan; Bakırarar, Batuhan; Kullu, Pinar; Ar, Yilmaz; Köse, Engi̇n; Eminoğlu, Fatma Tuba

doi:10.1089/tmj.2021.0610

Cited by 8 publications

(6 citation statements)

References 25 publications

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“… 24 Many centers started telemedicine appointments and used videoconferences as a replacement for face‐to‐face meetings. 13 , 25 Rates of satisfaction among patients proved to be high, with lack of laboratory tests 26 and medication being reported by patient organizations 13 as the main disadvantages. Rate of telemedicine used for IMD patients (90%) was reported to be higher compared to the general rare disease community in Europe and United States.…”

Section: Discussionmentioning

confidence: 99%

Impact of the SARS‐CoV‐2 pandemic on the health of individuals with intoxication‐type metabolic diseases—Data from the E‐IMD consortium

Mütze

Gleich

Barić

et al. 2022

J of Inher Metab Disea

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The SARS-CoV-2 pandemic challenges healthcare systems worldwide. Within inherited metabolic disorders (IMDs) the vulnerable subgroup of intoxicationtype IMDs such as organic acidurias (OA) and urea cycle disorders (UCD)show risk for infection-induced morbidity and mortality. This study (observation period February 2020 to December 2021) evaluates impact on medical health care as well as disease course and outcome of SARS-CoV-2 infections in patients with intoxication-type IMDs managed by participants of the European Registry and Network for intoxication type metabolic diseases Consortium (E-IMD). Survey's respondents managing 792 patients (n = 479 pediatric; n = 313 adult) with intoxication-type IMDs (n = 454 OA; n = 338 UCD) in 14 countries reported on 59 (OA: n = 36; UCD: n = 23), SARS-CoV-2 infections (7.4%).Medical services were increasingly requested (95%), mostly alleviated by remote technologies (86%). Problems with medical supply were scarce (5%).Regular follow-up visits were reduced in 41% (range 10%-50%). Most infected individuals (49/59; 83%) showed mild clinical symptoms, while 10 patients (17%; n = 6 OA including four transplanted MMA patients; n = 4 UCD) were hospitalized (metabolic decompensation in 30%). ICU treatment was not For affiliation refer to page 10

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Section: Discussionmentioning

confidence: 99%

Impact of the SARS‐CoV‐2 pandemic on the health of individuals with intoxication‐type metabolic diseases—Data from the E‐IMD consortium

Mütze

Gleich

Barić

et al. 2022

J of Inher Metab Disea

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“…Telemedicine is not routinely used health system in Turkey. Whole World interest in telemedicine during the COVID-19 pandemic (10)(11)(12)(13)(14).…”

Section: Yekedüz Et Al Reported the Pros And Cons Of Telemedicine For...mentioning

confidence: 99%

Out-of-pocket health expenditures in patients living with Inborn Errors of Metabolism

Gündüz¹,

Güdek

Kasapkara

2023

Preprint

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Aim: Implementation of newborn screening (NBS) programs for inborn errors of metabolism have advanced the diagnosis and management of affected infants and undoubtedly improved their outcomes. We aimed to determine out-of-pocket health expenditures of patients with inborn errors of metabolism during follow-up and treatment process and to determine the economic burden on the families. Materials and Methods: A total of 232 patients who voluntarily accepted to participate in the study and regularly followed up in the Department of Pediatric Metabolism with the diagnosis of Inborn Errors of Metabolism between April 2022 and July 2022 were included. Questionnaires were asked about the demographic characteristics of patients, use of health services, follow-up, treatment procedures, frequency of controls and health expenditures. Results: The average out-of-pocket expenditure of the households in the last month was 1039,22±1030,08 (minimum:20, maximum:5000) Turkish Liras (TL). When we consider the catastrophic health expenditure rate as the expenditure exceeding 40% of the household income; we found that 9.9% (23 people) of parents included in the study made catastrophic health expenditures. The rate of catastrophic expenditure of patients with diagnosis of Amino Acid Metabolism Disorders was found to be higher than the patients with diagnosis of Vitamin and Cofactor Metabolism Disorders. Similarly, Patients with the diagnosis of Lysosomal Storage Diseases had more expenditures than patients with the diagnosis of Vitamin and Cofactor Metabolism Disorders. When we compared the rate of catastrophic health expenditure of the patients with Urea Cycle Disorders and the patients with the diagnosis of patients with Vitamin and Cofactor Metabolism Disorders, the former had more expenditure than the latter (p<0.05). There was no significant difference between other disease groups in terms of catastrophic expenditure. The rate of catastrophic expenditures of the households living as large family type were higher than the families living as nuclear family type (p<0.01). A statistically significant difference was found between the rates of catastrophic expenditures of the families living in Ankara and those who admitted from other provinces for follow-up and treatment (p<0.001). However, there was no difference between the rates of catastrophic expenditure of the patients who received any treatment and those who were followed up without treatment (p>0.05). Conclusion: Due to the high rate of consanguineous marriages in our country, the development of newborn screening programs, the increase in awareness about metabolic diseases and the improvement in diagnostic methods; the frequency of metabolic diseases is increasing, and mortality and morbidity rates are significantly reduced with early diagnosis and treatment opportunities. It is necessary to carry out more comprehensive studies in order to determine and prevent the socioeconomic effects of out-of-pocket health expenditures of patients living with Inborn Errors of Metabolism.

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“…In many countries, the implementation of restrictive measures that reduced people's social and physical contact and limited their transportation within and between cities to overcome the spread of Coronavirus Disease 19 (COVID-19) was the provoking event that led to the wide adoption of telemedicine as a structured healthcare service [6][7][8]. The situation in the Sultanate of Oman was not different [9][10][11][12].…”

Section: Introductionmentioning

confidence: 99%

The usability of telephone-based telemedicine in primary healthcare: A quantitative evaluation and a hypothesized framework of determinants from the physicians’ perspective in Oman

et al. 2023

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Telemedicine has been appreciated as a smart solution to bridge the gaps in the delivery and coverage of healthcare worldwide. With the great impetus to integrate this service into primary healthcare facilities, evaluating its usability should be an ongoing process. This study aimed to quantitatively evaluate the usability of telemedicine from the primary healthcare physicians’ perspective in Oman. The evaluation was conducted using a cross-sectional study design. A self-administered online questionnaire was developed and validated as a scale to evaluate the usability of telemedicine as a safe and useful communication channel and outpatient record. Following a pilot study, the questionnaire was distributed to a sample of primary healthcare physicians who ran telemedicine clinics in Oman during 2020-2022. The questionnaire was completed by 143 primary healthcare physicians from different governorates. The total mean scale and subscale scores were computed. In addition, the frequency distribution of responses to each question was presented. The results showed that the total mean scale score of the usability of telemedicine in our clinics was 3.43/5.00. The subscale scores of the usability of telemedicine as a safe and useful service, the usability of telemedicine as a communication channel, and the usability of telemedicine as an outpatient record were 3.42/5.00, 3.23/5.00, and 3.99/5.00, respectively. In conclusion, the current telemedicine service in Oman’s primary healthcare facilities has some usability features, but there is still much room for improvement. With logical reasoning, a framework of potential determinants was inferred and proposed to improve the usability of telemedicine services in the future and comply with the principles of biomedical ethics.

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Pros and Cons of Telemedicine for Inherited Metabolic Disorders in a Developing Country During the COVID-19 Pandemic

Cited by 8 publications

References 25 publications

Impact of the SARS‐CoV‐2 pandemic on the health of individuals with intoxication‐type metabolic diseases—Data from the E‐IMD consortium

Impact of the SARS‐CoV‐2 pandemic on the health of individuals with intoxication‐type metabolic diseases—Data from the E‐IMD consortium

Out-of-pocket health expenditures in patients living with Inborn Errors of Metabolism

The usability of telephone-based telemedicine in primary healthcare: A quantitative evaluation and a hypothesized framework of determinants from the physicians’ perspective in Oman

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