Niloofar Jahromi; Sharareh Eskandarieh; Nazanin Maleki; Narges Sistany-Allahabadi; Mohammad Ali Sahraian
Volume 22, Issue 1 , January 2023, , Pages 16-22
Abstract
Background: Multiple sclerosis (MS) is a debilitating, non-traumatic, neurological disorder in young adults and can reduce quality of life (QoL) by interfering with the ability to work, leisure activities, and routine living tasks. Various studies have shown the dissatisfaction of people with MS in different ...
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Background: Multiple sclerosis (MS) is a debilitating, non-traumatic, neurological disorder in young adults and can reduce quality of life (QoL) by interfering with the ability to work, leisure activities, and routine living tasks. Various studies have shown the dissatisfaction of people with MS in different areas of care services. Regarding the patients' dissatisfaction with care services, in this study, we sought to identify the care challenges of MS patients in Iran. Methods: This cross-sectional study was conducted in 2016-2018 using a researcher-made questionnaire (designed by MS Specialists in an MS research center). The questionnaire examines the care challenges in four areas: 1) costs of medication, hospitalization, and rehabilitation services, 2) family support, insurance system, and job protection, 3) access to transportation system and treatment team, 4) quality of the provided care and services.Results: Completed questionnaires were received from 945 respondents. The mean age of responders was 35.92 years. In total, 731 (77.8) participants were women and 208 (22.2) were men. Academic education was reported among 615 (65.3) participants and 367 (40.2) were employed during the study, while 99 (10.5) of the subjects were not able to walk a minimum of 20 meters. The prioritization of care services challenges is as follows: the cost of pharmaceutical services (49.1), lack of telephone counseling (47.4), uninsured home rehabilitation (44.7), lack of qualified care centers (41.2), and rehabilitation costs (40.2).Conclusion: We found that patients who could not walk at least 20 meters and unemployed individuals had more problems and lower QoL. The patients who had non-academic education had more challenges with the cost of medication, transportation, and lack of familial support. This study shows the challenges of MS patients in receiving health care in Iran that vary in age, education, employment, and ability to walk. As the abovementioned challenges are of great importance in determining the QoL of people with MS, an appropriate solution is provided in this study to overcome these challenges.
Fardin Nabizadeh; Mohammad Balabandian; Mohammad Reza Rostami; Mahsa Owji; Mohammad Ali Sahraian; Maryam Bidadian; Fereshteh Ghadiri; Nasim Rezaeimanesh; Abdorreza Naser Moghadasi
Volume 21, Issue 3 , July 2022, , Pages 144-150
Abstract
Background: Cognitive impairments in patients with multiple sclerosis (MS) are suggested as a prognostic factor for disease development, and consequently higher disability and more deficits in daily and social activities. In this regard, we aimed to investigate the association between quality of life ...
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Background: Cognitive impairments in patients with multiple sclerosis (MS) are suggested as a prognostic factor for disease development, and consequently higher disability and more deficits in daily and social activities. In this regard, we aimed to investigate the association between quality of life (QOL) and cognitive function in patients with MS.Methods: We conducted a cross-sectional study on patients with relapsing-remitting MS (RRMS). General characteristic variables were carried out, and then all patients underwent assessments such as Multiple Sclerosis Quality of Life-54 (MSQOL-54), Minimal Assessment of Cognitive Function in Multiple Sclerosis (MACFIMS), Expanded Disability Status Scale (EDSS), Beck Depression Inventory-II (BDI-II), and North American Adult Reading Test (NAART).Results: In the present study, a total of 92 patients, including 76 women with a mean disease duration of 6.82 ± 4.80 years were involved. Results of simple Pearson correlation revealed a significant positive relation between California Verbal Learning Test (CVLT) total learning with MSQOL mental health (r = 0.267, P = 0.017) and physical health (r = 0.299, P = 0.007). After adjusting for potential confounders, there was a negative correlation between MSQOL mental health with Delis-Kaplan Executive Function System (D-KEFS) (r = -0.303, P = 0.015) and Judgment of Line Orientation (JLO) (r = -0.310, P = 0.013). Besides, MSQOL physical health was negatively associated with Brief Visuospatial Memory Test-Revised (BVMT-R) in the adjusted model (r = -0.270, P = 0.031).Conclusion: There is a statistically significant association between specific aspects of cognitive decline and QOL. Therefore, more attention should be paid to cognitive impairment in patients with MS as based on our findings, it is significantly associated with QOL.
Shahriar Faghani; Ali Asghar Okhovat; Narges Karimi; Mana Moassefi; Seyed Farzad Maroufi; Shahriar Nafissi; Farzad Fatehi
Abstract
Background: The 8-item myasthenia gravis activity of daily living (MG-ADL) questionnaire is a valid and reliable instrument for evaluating myasthenia gravis (MG)-associated disability. This study aims to assess its validity and reliability in the Iranian population.Methods: A total number of 58 patients ...
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Background: The 8-item myasthenia gravis activity of daily living (MG-ADL) questionnaire is a valid and reliable instrument for evaluating myasthenia gravis (MG)-associated disability. This study aims to assess its validity and reliability in the Iranian population.Methods: A total number of 58 patients with MG were qualified for the examination. All 58 patients completed the Persian translation of 15-item Myasthenia Gravis Quality of Life (MG-QOL15) and MG-ADL questionnaires initially, and 30 filled out the MG-ADL questionnaire 2 to 4 weeks after the initial visit. Pearson correlation coefficient of questionnaires, internal consistency using Cronbach's alpha (α), and test-retest repeatability of the questionnaire were evaluated.Results: The Pearson correlation coefficient of Persian versions of MG-QOL and MG-ADL was 0.93 (P < 0.01). The Persian MG-ADL showed satisfactory internal consistency (Cronbach’s α = 0.89) and test-retest reliability (r = 0.99, P < 0.01).Conclusion: The Persian MG-ADL is a valid and reliable questionnaire for the determination of activities of daily life in Iranian patients with MG.
Motahareh Afrakhteh; Sara Esmaeili; Mohsen Shati; Seyedeh Fahimeh Shojaei; Maryam Bahadori; Babak Zamani; Mostafa Almasi-Doghaee; Bahram Haghi-Ashtiani
Abstract
Background: Amyotrophic Lateral Sclerosis-Specific Quality of Life-Revised (ALSSQOL-R) encompasses 50 items which assess quality of life (QOL) in patients with amyotrophic lateral sclerosis (ALS) in six major domains. This study aims to translate the ALSSQOL-R into Persian and evaluate its reliability ...
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Background: Amyotrophic Lateral Sclerosis-Specific Quality of Life-Revised (ALSSQOL-R) encompasses 50 items which assess quality of life (QOL) in patients with amyotrophic lateral sclerosis (ALS) in six major domains. This study aims to translate the ALSSQOL-R into Persian and evaluate its reliability and validity among Iranian patients. Methods: ALSSQOL-R was translated by the standard multi-step forward-backward method. Content validity was calculated using item content validity index (I-CVI). Three items in the “intimacy” domain were deleted considering Iranian culture. Cronbach’s alpha was used for all 6 dimensions to calculate the internal consistency reliability. Test-retest reliability was evaluated using intraclass correlation coefficient (ICC) with one-month interval. Concurrent validity was measured by the validated version of 36-Item Short Form Health Survey (SF-36) questionnaire. Results: Sixty-three patients with ALS were enrolled in the study. I-CVI was 70%, promoted to 85% after modifications (acceptable). Regarding internal consistency reliability, Cronbach’s alpha in all six domains was ³ 0.70 and total Cronbach’s alpha was 0.89 which is assumed as good. In terms of test-retest reliability, ICC [95% confidence interval (CI)] was 0.91 (91%) and Pearson correlation coefficient (r) was 0.90 (P < 0.001), all indicating an excellent reliability. The concurrent validity was established based on a strong correlation with SF-36 (r = 0.744, P < 0.001). Conclusion: The findings show that the modified Persian version of ALSSQOL-R is a valid and reliable QOL questionnaire which can be used for Iranian patients with ALS in both clinical and research settings.
Melika Rafiemehr; Ali Asghar Okhovat; Kamyar Moradi; Gilda Kiani Mehr; Shahriar Nafissi; Farzad Fatehi
Abstract
Background: Caregivers of patients with amyotrophic lateral sclerosis (ALS) may suffer from anxiety, depression, and reduced quality of life (QoL). Our goal was to evaluate the QoL and mood disorders in caregivers and their correlation with the patients' demographic, physical, and mental conditions. ...
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Background: Caregivers of patients with amyotrophic lateral sclerosis (ALS) may suffer from anxiety, depression, and reduced quality of life (QoL). Our goal was to evaluate the QoL and mood disorders in caregivers and their correlation with the patients' demographic, physical, and mental conditions. Methods: We analyzed data from 39 patients with ALS and their caregivers. Patients completed questionnaires of anxiety assessed by Generalised Anxiety Disorder Assessment (GAD-7), depression using the Beck Depression Inventory-II (BDI-II), and QoL via 40-item Amyotrophic Lateral Sclerosis Assessment Questionnaire (ALSAQ-40). Physical impairment was also measured in the patients using the revised Amyotrophic Lateral Sclerosis Functional Rating Scale (ALSFRS-R). Caregivers were also assessed by BDI-II, GAD-7, and 36-item Short-Form Health Survey questionnaire (SF-36). Results: The prevalence of depression and anxiety in the patients was 82.1% and 71.8%, respectively. Caregivers also had higher rates of anxiety and depression and lower levels of QoL in comparison with the general population (anxiety: 66.7%, depression: 43.6%). Depression and anxiety were considerably associated with worsened QoL in the caregivers. None of the demographic, physical, or mental characteristics of patients with ALS were related to either mood status or QoL of the caregiver population. Conclusion: Caregivers experience higher rates of anxiety and depression and lower QoL in comparison with the general population. The severity of mood disorders is inversely associated with the physical and mental domains of caregivers' QoL. Nonetheless, QoL in the caregivers is not affected by the physical or mental disability of the patients.
Mansoureh Togha; Maral Seyed-Ahadi; Elham Jafari; Zahra Vahabi; Fereshteh Naderi-Behdani; Somayeh Nasergivehchi; Samaneh Haghighi; Zeinab Ghorbani; Fatemeh Farham; Seyed Mohammad Hassan Paknejad; Pegah Rafiee
Abstract
Background: Headache is among the most common disabling neurologic disorders. We measured quality of life in chronic migraine (CM) and episodic migraine (EM), stratified by medication overuse headache (MOH) and presence of aura. Methods: In this observational study, conducted from January 2016 to December ...
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Background: Headache is among the most common disabling neurologic disorders. We measured quality of life in chronic migraine (CM) and episodic migraine (EM), stratified by medication overuse headache (MOH) and presence of aura. Methods: In this observational study, conducted from January 2016 to December 2018, adult patients referred to the tertiary headache clinic of Sina Hospital in Tehran, Iran, who met International Classification of Headache Disorders, 3rd Edition-beta (ICHD-3 β) criteria for migraine were classified to EM and CM subtyped based on presence of aura and MOH. Validated Farsi versions of Migraine Disability Assessment Scale (MIDAS) and 6-item Headache Impact Test (HIT-6) questionnaires were used. Results: A total of 2454 patients (1907 women) were enrolled from which 1261 (51.4%) patients had EM and 1193 (48.6%) had CM, while 908 subjects (37.0%) had MOH, of whom 890 (98.0%) had CM. Median scores of MIDAS and HIT-6 were significantly higher in patients with CM compared to EM sufferers. Chronic migraineurs with MOH had a significantly higher median score of MIDAS and HIT-6 compared to patients with non-MOH CM. Also, there was a moderate positive correlation between MIDAS (disability) and HIT-6 scores (impact on patients’ life) and a moderate correlation between HIT-6 and pain severity. Conclusion: The results of this study confirm that CM and MOH are associated with a higher headache-related disability and impact on life compared to EM. Therefore, treatment goals in prevention of MOH and migraine transformation warrant higher quality of life in patients with migraine.
Kamyar Moradi; Shirin Jamal-Omidi; Maryam Masoudi; Sayna Bagheri; Shahriar Nafissi; Farzad Fatehi
Abstract
Background: Neuromuscular disorders affect physical and mental aspects of a patient and in other words alter the patients’ quality of life (QOL). In the present study, we investigated the validity and reliability of the Persian version of Individualized Neuromuscular QOL (INQOL) to provide a better ...
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Background: Neuromuscular disorders affect physical and mental aspects of a patient and in other words alter the patients’ quality of life (QOL). In the present study, we investigated the validity and reliability of the Persian version of Individualized Neuromuscular QOL (INQOL) to provide a better insight into patients’ QOL. Methods: Original version of the INQOL was translated backward and then forward. The resultant Persian version and a standard questionnaire, 36-Item Short Form Health Survey (SF-36), were then given to 83 participants with neuromuscular disorders. Internal consistency, known-group validity, concurrent validity, and test-retest reliability were assessed. Results: The scores of matched sections for QOL in the two questionnaires were favorably correlated (P < 0.05). Correlation between test and retest scores was also significant (P < 0.05). Moreover, the Cronbach’s alpha of 0.82 was representative of robust internal consistency between INQOL covering sections. Conclusion: The Persian version of the INQOL can be used in clinical and research practice to detect changes in QOL which are related to neuromuscular disorders, due to its favorably reliable and valid characteristics.
