scholarly journals Design, validation and implementation of the post-acute (long) COVID-19 quality of life (PAC-19QoL) instrument

2021 ◽  
Vol 19 (1) ◽  
Author(s):  
Ravi Jandhyala

Abstract Background The novel coronavirus (SARS-CoV-2) has led to a global pandemic, resulting in a disease termed COVID-19, which commonly presents in adults as a typical infection of the upper respiratory tract. Although the disease is often acute, one in ten patients can continue to be affected for weeks or months, resulting in a state called long COVID. Existing evidence suggests there are no patient-centred instruments for capturing the impact of long COVID on the quality of life of people affected. Methods The Jandhyala Method was used to identify indicators of long COVID quality of life. The resulting post-acute (long) COVID-19 Quality of Life (PAC-19QoL) instrument was validated with a control group of unaffected participants and finally implemented in the dedicated patient registry, PAC-19QoLReg. Participants 15 participants suffering from long COVID, who have been positively diagnosed with COVID-19, either via diagnostic or antibody tests and a validation control group of 16 healthy participants who have not suffered from COVID-19. Main outcome measures Indicators submitted by participants with long COVID that address the specific impact of the illness on their quality of life. Results Forty-four Quality of Life Indicators (QoLI) across four domains, namely, psychological, physical, social, and work, were agreed by the participants with long COVID to be relevant for the assessment of their quality of life (CI > 0.5). The validation stage identified 35/44 QoLIs that differentiated between the two groups, with a statistically significant difference between the mean QoLI Likert Scores (p < 0.05). Conclusions The PAC-19QoL instrument and PAC-19QoLReg prospective observational cohort clinical study will enable an understanding of disease progression, on and off treatment, on the quality of life of patients with long COVID beyond simple symptomatology. Trial registration: ClinicalTrials.gov Identifier NCT04586413; 14th October 2020.

2021 ◽  
Author(s):  
Ravi Jandhyala

Abstract Background To design, validate and implement a Post-Acute (long) COVID-19 disease-specific quality of life instrument, (the PAC-19QoL), in a dedicated patient registry, PAC-19QoLReg, to observe changes in quaQoL over a 12-month period. Methods The Jandhyala Method was used to identify indicators of long COVID quality of life. The resulting PAC-19QoL was validated with a control group of unaffected participants and finally implemented in the dedicated PAC-19QoLReg. Participants : 15 participants suffering from long COVID, who have been positively diagnosed with COVID-19, either via diagnostic or antibody tests and a validation control group of 16 healthy participants who have not suffered from COVID-19. Main Outcome measures: Indicators submitted by participants with long COVID that address the specific impact of the illness in their quality of life. Results Forty-four Quality of Life Indicators (QoLI) across four domains – psychological, physical, emotional and work-related – were agreed by the participants with long COVID to be relevant for the assessment of their quality of life (CI > 0.5). The validation stage identified 35/44 QoLIs that differentiated between the two groups, with a statistically significant difference between the mean QoLI Likert Scores (P < 0.05). Conclusions The PAC-19QoL instrument and PAC-19QoLReg prospective observational cohort clinical study will enable an understanding of disease progression, on and off treatment, on the quality of life of patients with long COVID beyond simple symptomatology. Trial registration: ClinicalTrials.gov Identifier NCT04586413; 14th October 2020


2004 ◽  
Vol 122 (6) ◽  
pp. 252-258 ◽  
Author(s):  
Tathiana Pagano ◽  
Luciana Akemi Matsutani ◽  
Elisabeth Alves Gonçalves Ferreira ◽  
Amélia Pasqual Marques ◽  
Carlos Alberto de Bragança Pereira

CONTEXT: Fibromyalgia is a syndrome characterized by chronic, diffuse musculoskeletal pain, and by a low pain threshold at specific anatomical points. The syndrome is associated with other symptoms such as fatigue, sleep disturbance, morning stiffness and anxiety. Because of its chronic nature, it often has a negative impact on patients' quality of life. OBJECTIVE: To assess the quality of life and anxiety level of patients with fibromyalgia. TYPE Of STUDY: Cross-sectional. SETTING: Rheumatology outpatient service of Hospital das Clínicas (Medical School, Universidade de São Paulo). METHODS: This study evaluated 80 individuals, divided between test and control groups. The test group included 40 women with a confirmed diagnosis of fibromyalgia. The control group was composed of 40 healthy women. Three questionnaires were used: two to assess quality of life (FIQ and SF-36) and one to assess anxiety (STAI). They were applied to the individuals in both groups in a single face-to-face interview. The statistical analysis used Student's t test and Pearson's correlation test (r), with a significance level of 95%. Also, the Pearson chi-squared statistics test for homogeneity, with Yates correction, was used for comparing schooling between test and control groups. RESULTS: There was a statistically significant difference between the groups (p = 0.000), thus indicating that fibromyalgia patients have a worse quality of life and higher levels of anxiety. The correlations between the three questionnaires were high (r = 0.9). DISCUSSION: This study has confirmed the efficacy of FIQ for evaluating the impact of fibromyalgia on the quality of life. SF-36 is less specific than FIQ, although statistically significant values were obtained when analyzed separately, STAI showed lower efficacy for discriminating the test group from the control group. The test group showed worse quality of life than did the control group, which was demonstrated by both FIQ and SF-36. Even though STAI was a less efficient instrument, it presented significant results, showing that fibromyalgia patients presented higher levels of anxiety, both on the state and trait scales. Thus, patients with fibromyalgia had higher levels of tension, nervousness, preoccupation and apprehension, and higher propensity towards anxiety. CONCLUSION: The three instruments utilized showed efficiency in evaluating fibromyalgia patients. FIQ was found to be the most efficient instrument for discriminating and assessing the impact of fibromyalgia on their quality of life. It can be concluded that such patients have a worse quality of life and higher levels of anxiety.


2021 ◽  
Author(s):  
Cassandra Alighieri ◽  
Evelien D'haeseleer ◽  
Kim Bettens ◽  
Katrien Bonte ◽  
Hubert Vermeersch ◽  
...  

Abstract Background. To date, there seems to be no consensus on the long-term quality of life outcomes in patients living with a cleft of the lip and/or palate (CL/P) with regard to well-being and functioning. Some studies report a substantial influence of having a cleft while other studies report no influence of living with a cleft. The purpose of this study was to investigate the impact of living with a CL/P on esthetics, employment and functioning in Dutch-speaking adolescents and adults with a CL/P. Methods. 30 Patients with a CL/P (19 men and 11 women) were included in the study. The mean age of the participants was 26.93 years (SD = 11.688 years, range = 15 – 66 years). An age and gender matched control group was included consisting of 30 participants (19 men and 11 women) without a CL/P with a mean age of 26.87 years (SD = 11.729 years, range = 16-67 years). Esthetics, employment and functioning were assessed using different standardized self-report questionnaires. Results. No statistically significant difference in educational level, employment, monthly net income, marital status and having children was found between participants with and without a CL/P. In addition, the quality of life scores did not differ between the two groups. Within the group of individuals with a CL/P, the findings revealed that the proportion of participants who reported an influence of the CL/P on daily functioning, general well-being, social contacts, family life, applying for a job, work, education and leisure time differed by age. Older individuals experienced more influence of their CL/P compared to younger individuals. With regard to esthetics, the findings revealed that participants without a CL/P were less satisfied with the appearance of their jaws compared to participants with a CL/P. Conclusion. In general, the findings of our study revealed no significant differences between adolescents and adults with and without a CL/P with regard to employment and functioning. Considering age within the group of participants with a CL/P, however, the results demonstrated that older individuals were more likely to experience a negative impact of their cleft on well-being and functioning. These findings suggest that older individuals with a CL/P might benefit from additional socio-emotional support, for example peer contacts and support groups or psychological guidance. Longitudinal research on this topic is highly needed to determine possible fluctuations in the impact of living with a CL/P.


2021 ◽  
Vol 4 (2) ◽  
pp. 44
Author(s):  
Titiek Berniyanti ◽  
Marhazlinda Marhazlinda ◽  
Retno Palupi ◽  
Dini Setyowati ◽  
Aulia Ramadhani ◽  
...  

Background: COVID-19 is a global pandemic health problem that is getting a lot of attention around the world today. It is a serious illness that can significantly affect the daily lives of patients and their families in terms of mental health problems, such as post-traumatic stress, depression, anxiety, and insomnia, as well as negatively impacting the quality of patients. Purpose: This study aims to determine the impact of long haulers on the quality of life of COVID-19 survivors in East Java, Indonesia. Methods: Researchers conduct detailed the solution to overcome the problem by using educational videos and sports or routine gymnastics to change the attitude of COVID-19 survivors towards long haul healing is done through the distribution of the two facilities via the google drive link. The drafting team has 2 program plans as a solution to the problems carried out. Results: The prevalence of COVID-19 survivors with long haulers was slightly higher than that of non-long haulers. The results of the knowledge and attitude scores on the pre-test and post-test after viewing the media booklet and educational video showed a significant difference and improvement of quality of life in the result. Conclusion: The level of knowledge, attitudes, and quality of life including the physical health of long haul COVID-19 survivors in East Java experienced a significant increase after being given counseling through online booklets andeducational videos.


2021 ◽  
Vol 2021 ◽  
pp. 1-7
Author(s):  
Xuepei Li ◽  
Jianqiang Lin ◽  
Zidong Chen ◽  
Guangming Jin ◽  
Danying Zheng

Purpose. To determine the changes in vision-related quality of life and psychological distress after cataract surgery in monocular patients and to compared these with a control group of age- and gender-matched binocular patients. Methods. We enrolled 40 monocular patients and 40 binocular patients who underwent cataract surgery from August 2017 to December 2018. All participants undertook eye examinations and answered questionnaires (the National Eye Institute Visual Function Questionnaire, Self-rating Anxiety Scale, and Self-rating Depression Scale) before and after cataract surgery. Result. The monocular patients had significantly worse mean CDVA than the binocular patients before and after surgery. However, there was no significant difference between the increases gained by the two groups. Mean composite VFQ-25 scores of the monocular group were significantly lower than those of the binocular group before and after surgery, but the improvement experienced by the monocular group was statistically larger than the binocular group (37.20 ± 12.84 vs. 19.11 ± 5.13, P < 0.001 ). Mean standard SAS scores of monocular patients were significantly higher than those of binocular controls before and after surgery, while monocular patients experienced a significant greater decline of SAS scores (−9.41 ± 5.39 VS −3.84 ± 1.61, P < 0.001 ). Mean standard SDS scores of the monocular group were significantly higher than those of the control group before and after surgery, but the monocular group experienced a significantly greater decline of SDS scores following cataract surgery (−11.91 ± 6.38 VS −4.78 ± 1.79, P < 0.001 ). There was a significant correlation between the preoperative logMAR CDVA and both the postoperative logMAR CDVA (r = 0.63, P < 0.001 ) and the changes in the logMAR CDVA (r = −0.881, P < 0.001 ) for monocular patients. Linear regression analyses suggested that higher postoperative VFQ-25 scores had significant associations with better preoperative CDVA and the absence of systemic comorbidity (both P < 0.05 ). Age and ocular comorbidity were significantly associated with postoperative SAS scores (both P < 0.05 ). Age and systemic comorbidity remained significant impact factors for SDS scores (both P < 0.05 ). Conclusion. Monocular patients reported greater improvement in vision-related quality of life and greater decline in the level of anxiety and depression than binocular control subjects, despite having similar CDVA gains after cataract surgery. We argue that it is not a better choice for monocular patients to delay cataract surgery until the cataract is very advanced. A clear understanding of the impact of cataract surgery on vision-related quality of life and psychological distress in monocular patients is needed by ophthalmologists when making surgery decision.


2008 ◽  
Vol 61 (5-6) ◽  
pp. 215-221 ◽  
Author(s):  
Svetlana Simic ◽  
Petar Slankamenac ◽  
Aleksandar Kopitovic ◽  
Zita Jovin ◽  
Sofija Banic-Horvat

The tension type headache is the most common headache type, which many men and women suffer from in one period of their life and aggravates business productivity, family and social functioning. Quality of life estimation in patients suffering from tension type headache enables us to get a better insight into the impact of the disease on the patient. The comparison among the quality of life in the patients suffering from tension type headache and the quality of life in the control group subjects has been carried out in a research by applying the QVM questionnaire. The obtained results have shown a significant difference in the quality of life and its sub domains indicating worse quality in the patients suffering from tension type headache.


2019 ◽  
Vol 29 (8) ◽  
pp. 1082-1087 ◽  
Author(s):  
Line M. Holst ◽  
Jonas B. Kronborg ◽  
Lars Idorn ◽  
Jesper V. Bjerre ◽  
Niels Vejlstrup ◽  
...  

AbstractObjective:To describe the impact of CHD surgery in early childhood on quality of life in children aged 10–16 years with surgically corrected Ventricular Septal Defect, Transposition of the Great Arteries, and Tetralogy of Fallot.Method:A cross-sectional survey study of quality of life survey on 161 children and adolescents aged 10–16 years with surgically corrected Ventricular Septal Defect, Transposition of the Great Arteries, and Tetralogy of Fallot. The international Paediatric Quality of Life 4.0 quality of life questionnaires were applied and collected for assessment from patients and parents. The endpoints were total, physical, emotional, social, and school quality of life scores.Results:The quality of life total and school scores was significantly lower in children with CHD than their healthy peers. There was no significant difference in quality of life between the three CHD groups. All three CHD groups had a significantly lower total (7.7–13.2%, p<0.001) and school scores (21.1–31.6%, p<0.001) than the control group. The tetralogy of Fallot group was the only group that had significantly lower scores in the physical subscale (p<0.001) than the controls.Conclusion:Children and adolescents with surgically corrected CHD show losses in quality of life in total and school scores compared to healthy controls. The tetralogy of Fallot group was the only CHD group that had significantly lower physical score than the controls.


2021 ◽  
Vol 19 (Sup2) ◽  
pp. S24-S31
Author(s):  
Sara Fahimi ◽  
Maryam Allahbakhshian ◽  
Amir Sadeghi ◽  
Atefeh Allahbakhshian ◽  
Malihe Nasiri

Background: Peptic ulcers can have a major negative impact on patients' quality of life (QoL), especially if patients do not adhere to prescribed medication. Aim: This study was carried out to investigate the impact on QoL and adherence of an educational programme for peptic ulcer patients, delivered by a variety of methods. Methods: The population in this single-blind randomised control experimental study included 120 peptic ulcer patients randomly assigned to four groups. Data were collected using the Gastrointestinal Patients' Quality of Life Index and the Morisky Medication Adherence Scale. Findings: A significant increase was observed in the mean scores related to QoL (p=0.001) and medication adherence (p=0.003) compared with the control group after the educational intervention in the intervention groups. One-way ANOVA test for four independent groups indicated a significant difference between the mean scores related to QoL and medication adherence in the four groups after the intervention (p<0.05). In addition, a significant difference was reported in the mean score changes before and after the intervention in QoL and medication adherence between messenger group and face-to-face, web and control groups. Conclusions: Although all three methods of face-to-face, web-based and messenger-based education improved the QoL and medication adherence in peptic ulcer patients, the last method enhanced these patient-related outcomes more effectively than the other two.


2018 ◽  
Vol 4 ◽  
pp. 3-13
Author(s):  
Yuriy Dumanskiy ◽  
Oleksandr Bondar ◽  
Oleksandr Tkachenko ◽  
Evhenii Stoliachuk ◽  
Vasilii Ermakov

In recent years, breast cancer (BC) is the most common cancer pathology and the most common cause of disability among women in developed countries. Finding the most effective ways of interaction between the patient and the doctor creates the preconditions for the necessary analysis of the treatment process from an objective and subjective point of view. Therefore, an important indicator to be taken into account is the quality of life of a patient. To compare the indicators of a comprehensive assessment of the quality of life of patients to the adverse locally advanced forms (LA) of breast cancer before and after systemic intravenous polychemotherapy (SPCTx) and selective endolymphatic polychemotherapy (ELPCTx) in neoadjuvant mode. The study was conducted on the basis of a random analysis of outpatient cards from 112 patients with LA BC T4A-DN0-3M0 who received a comprehensive antitumor treatment on the basis of the Donetsk regional antitumor center and the University Clinic of the Odessa National Medical University from 2000 to 2017, which was proposed a questionnaire at various stages of preoperative treatment. The first (control) group consisted of 65 patients (58 %) with inoperable forms of LA BC, which was performed in neoadjuvant mode by SPCTx. The second (study group) included 47 patients (42 %) with inoperable forms of LA BC, which was performed as a neoadjuvant course ELPCTx. According to the integral indicators of quality of life and quality of health between patients in the control and study groups, there was no statistically significant difference. In a detailed analysis of the indicators of symptomatic scales, the difference between the groups did not exceed the critical. Based on the results of a study conducted among patients receiving endolymphatic chemotherapy in a neoadjuvant mode, the subjective evaluations of treatment in absolute numbers have better reference values without statistical superiority. The study of the integrative indicator of quality of life and its discrete elements is an ergonomic and economical means of heuristic assessment of the health of patients in order to further develop more rational and convenient ways of solving urgent issues of modern oncology by increasing compliance and finding a compromise between the physician and the patient.


2020 ◽  
Vol 10 (1) ◽  
Author(s):  
Aneta Bac ◽  
Magdalena Wróbel ◽  
Katarzyna Ogrodzka-Ciechanowicz ◽  
Edyta Michalik ◽  
Anna Ścisłowska-Czarnecka

Abstract The assessment of the six-week influence of Kinesio Taping combined with a rehabilitation on selected ultrasonography measurements, the level of disability, and the quality of life in patients with rotator cuff lesions. 60 participants were randomly assigned into a taping group (KT combined with a six-week rehabilitating protocol) and a control group (only rehabilitation protocol). In all patients the following assessments were performed twice: USG, UEFI and NHP questionnaires. In the examination of the subacromial space and the subacromial bursa in the taping group, no statistical significance was observed. A statistically significant change in the thickness of the muscles was obtained only for the thickness of the infraspinatus in the taping group. A statistically significant change was obtained in the assessment of tendinopathy only for the supraspinatus muscle in both groups. Within both groups a statistically significant difference was observed in the average UEFI and NHP scores; however, the differences in the scores obtained between the groups were not statistically significant. The use of KT with a rehabilitation program did not yield statistically significantly better results in the improvement of selected shoulder region indicators, the function of the upper limb and the quality of life.


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