scholarly journals Five-Month Follow-up Shows No Improvement in Dermatological Complications in Children With Type 1 Diabetes Using Continuous Glucose Monitoring Systems and Insulin Pumps

2019 ◽  
pp. 193229681988242
Author(s):  
Anna T. Weng ◽  
Claus Zachariae ◽  
Karl B. Christensen ◽  
Jannet Svensson ◽  
Anna K. Berg
Keyword(s):  
Continuous Glucose Monitoring ◽  
Glucose Monitoring ◽  
Initial Study ◽  
Online Questionnaire ◽  
Related Quality ◽  
Health Related ◽  
Barrier Cream ◽  
Lower Hrqol

Background: A Danish study showed that 90% of the pediatric patients who participated had some time experienced dermatological complications due to treatment with continuous subcutaneous insulin infusion (CSII). This follow-up study describes dermatological complications due to CSII and/or continuous glucose monitoring (CGM) between the two study periods and includes health-related quality of life (HrQoL) measurements. Methods: A total of 138 patients (95%) out of 145 patients from the initial study answered an online questionnaire regarding dermatological complications related to CSII and/or CGM, five months later. A second questionnaire (DISABKIDS) regarding HrQoL was sent out to those 138 of which 111 patients completed it. The patients were aged from 2 to 20 years. Descriptive statistics, χ2 tests, and univariate and multivariate analyses were used to analyze the data. Results: In total, 81% of the 138 patients continued to have dermatological complications at follow-up. Itching was the most frequently reported complication. Patients using Enlite reported more dermatological complications than those using Libre. In total, 79% of the patients who used barrier cream in the initial study still had dermatological complications five months later. Age, gender, Body Mass Index (BMI), or HbA1c levels showed no significant association with dermatological complications. Patients who perceived dermatological complications as a greater problem had lower HrQoL scores. Conclusion: Once dermatological complications start to appear, they become chronic, indicating that the treatments currently available are inadequate. Patients perceiving dermatological complications as a greater problem were associated with lower HrQoL. These findings highlight the need for additional preventive studies.

scholarly journals The impact of demographic and clinical characteristics on the trajectories of health-related quality of life among patients with Fabry disease

2021 ◽  
Vol 16 (1) ◽  
Author(s):  
Solrun Sigurdardottir ◽  
Birgitte Bjerkely ◽  
Trond G. Jenssen ◽  
Per Mathisen ◽  
Charlotte von der Lippe ◽  
...  
Keyword(s):  
Medical Complications ◽  
Health Related Quality ◽  
Sf 36 ◽  
Related Quality ◽  
Health Related ◽  
Mental Hrqol ◽  
Male Sex ◽  
Lower Hrqol

Abstract Background Fabry disease (FD) is an X-linked lysosomal storage disorder characterized by multiorgan dysfunction. Since individuals with FD usually experience progressive clinical disease manifestations, their health-related quality of life (HRQOL) is expected to change over time. However, there is limited longitudinal research examining HRQOL outcomes in individuals with FD. We aimed to: assess longitudinal outcomes in HRQOL in adults with FD; examine the physical- and mental HRQOL trajectories at the initial registration (baseline), 3–5 year, and 7–13 year follow-ups; and evaluate the possible associations of age, sex and medical complications with the physical- and mental HRQOL trajectories. Methods Forty-three individuals with FD (53% female) who were aged 18 to 81 years at baseline attended clinical follow-up visits between 2006 and 2020. Medical records were extracted retrospectively. Demographics and the 36-item Short-Form Health Survey (SF-36) were recorded at scheduled visits, except for the last data collection which was prospectively obtained in 2020. The physical (PCS) and mental (MCS) composite scores (SF-36) were chosen as outcome measures. Results The eight SF-36 domain scores were stable over a span of 13 years, and only physical- and social functioning domains worsened clinically over this follow-up period. Mean baseline SF-36 domain scores were all significantly lower (decreased HRQOL) in the FD sample compared with Norwegian population norms. Two hierarchical linear models were run to examine whether demographics and medical complications (measured at the last clinical visit) predicted physical and mental HRQOL trajectories. Age above 47 years (p < 0.001), male sex (p = 0.027), small fibre neuropathy (p < 0.001), renal dysfunction (p < 0.001), and cerebrovascular events (p = 0.003) were associated with lower HRQOL over time. No significant interactions were found between the time of follow up and the abovementioned predictors of HRQOL. Conclusions Overall HRQOL trajectories remained stable between baseline, 3–5 year, and 7–13 year follow-ups, with the majority of individuals reporting decreased physical and mental HRQOL. Medical complications in combination with older age and male sex are important predictors of lower HRQOL in FD. Awareness of this relationship is valuable both for health care providers and for patients. The findings provide indicators that can guide treatment decisions to improve physical and mental HRQOL outcomes.

scholarly journals Factors influencing the self-reported sense of deviation in adults with successful surgical outcomes for strabismus

2020 ◽  
Vol 20 (1) ◽  
Author(s):  
Na Ji ◽  
Meiping Xu ◽  
Huanyun Yu ◽  
Jinling Xu ◽  
Xinping Yu
Keyword(s):  
Surgical Outcomes ◽  
Successful Outcome ◽  
Vertical Deviation ◽  
Patient Demographics ◽  
Gender Education ◽  
Related Quality ◽  
Health Related ◽  
Lower Hrqol

Abstract Background To determine whether a sense of deviation remains in adults with successful motor alignment who fulfil diplopia criteria after surgery and to examine the factors associated with this judgement. Methods This was a retrospective study. Adult patients defined as having a successful outcome based on more than 1 year of post-operative follow-up visits were included in the study. The sense of deviation was determined at the last visit. Pre- and post-operative deviation and characteristics including age, gender, education level, occupation, diagnosis, size of deviation, extraocular movement (EOM), binocular function, and health-related quality of life (HRQOL) were recorded. Results In total, 22 (24%) of the 91 adults with successful surgical outcomes reported a sense of deviation. No significant differences were noted between subjects with and without a sense of deviation regarding patient demographics, pre- and post-operative deviation, changes in deviation, sensory fusion or EOM. Subjects with a sense of deviation had an increased prevalence of and larger post-operative vertical deviation, poorer stereo function, and lower HRQOL scores than those with no sense of deviation. The presence of post-operative vertical deviation was associated with a sense of deviation. Conclusions Approximately one-fourth (24%) of adults defined as having successful surgical outcomes who still had a sense of deviation exhibited worse stereo function, higher vertical deviation size and lower HRQOL scores. The presence of 3 to 5 prism dioptres(pd) of vertical deviation would be the main factor associated with a sense of deviation post-operatively.

Effectiveness of the Chiari Health Index for Pediatrics instrument in measuring postoperative health-related quality of life in pediatric patients with Chiari malformation type I

2020 ◽  
pp. 1-6
Author(s):  
Georgina E. Sellyn ◽  
Alan R. Tang ◽  
Shilin Zhao ◽  
Madeleine Sherburn ◽  
Rachel Pellegrino ◽  
...  
Keyword(s):  
Surgical Intervention ◽  
Type I ◽  
Health Related Quality ◽  
Health Index ◽  
Chiari Malformation Type I ◽  
Related Quality ◽  
Health Related ◽  
Over Time

OBJECTIVEThe authors’ previously published work validated the Chiari Health Index for Pediatrics (CHIP), a new instrument for measuring health-related quality of life (HRQOL) for pediatric Chiari malformation type I (CM-I) patients. In this study, the authors further evaluated the CHIP to assess HRQOL changes over time and correlate changes in HRQOL to changes in symptomatology and radiological factors in CM-I patients who undergo surgical intervention. Strong HRQOL evaluation instruments are currently lacking for pediatric CM-I patients, creating the need for a standardized HRQOL instrument for this patient population. This study serves as the first analysis of the CHIP instrument’s effectiveness in measuring short-term HRQOL changes in pediatric CM-I patients and can be a useful tool in future CM-I HRQOL studies.METHODSThe authors evaluated prospectively collected CHIP scores and clinical factors of surgical intervention in patients younger than 18 years. To be included, patients completed a baseline CHIP captured during the preoperative visit, and at least 1 follow-up CHIP administered postoperatively. CHIP has 2 domains (physical and psychosocial) comprising 4 components, the 3 physical components of pain frequency, pain severity, and nonpain symptoms, and a single psychosocial component. Each CHIP category is scored on a scale, with 0 indicating absent and 1 indicating present, with higher scores indicating better HRQOL. Wilcoxon paired tests, Spearman correlations, and linear regression models were used to evaluate and correlate HRQOL, symptomatology, and radiographic factors.RESULTSSixty-three patients made up the analysis cohort (92% Caucasian, 52% female, mean age 11.8 years, average follow-up time 15.4 months). Dural augmentation was performed in 92% of patients. Of the 63 patients, 48 reported preoperative symptoms and 42 had a preoperative syrinx. From baseline, overall CHIP scores significantly improved over time (from 0.71 to 0.78, p < 0.001). Significant improvement in CHIP scores was seen in patients presenting at baseline with neck/back pain (p = 0.015) and headaches (p < 0.001) and in patients with extremity numbness trending at p = 0.064. Patients with syringomyelia were found to have improvement in CHIP scores over time (0.75 to 0.82, p < 0.001), as well as significant improvement in all 4 components. Additionally, improved CHIP scores were found to be significantly associated with age in patients with cervical (p = 0.009) or thoracic (p = 0.011) syrinxes.CONCLUSIONSThe study data show that the CHIP is an effective instrument for measuring HRQOL over time. Additionally, the CHIP was found to be significantly correlated to changes in symptomatology, a finding indicating that this instrument is a clinically valuable tool for the management of CM-I.

scholarly journals Randomized controlled study of the impact of a participatory patient care plan among primary care patients with common chronic diseases: a one-year follow-up study

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Nina Tusa ◽  
Hannu Kautiainen ◽  
Pia Elfving ◽  
Sanna Sinikallio ◽  
Pekka Mäntyselkä
Keyword(s):  
Quality Of Life ◽  
Patient Care ◽  
Usual Care ◽  
Care Plan ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Disease Specific

Abstract Backround Chronic diseases and multimorbidity are common in the ageing population and affect the health related quality of life. Health care resources are limited and the continuity of care has to be assured. Therefore it is essential to find demonstrable tools for best treatment practices for patients with chronic diseases. Our aim was to study the influence of a participatory patient care plan on the health-related quality of life and disease specific outcomes related to diabetes, ischemic heart disease and hypertension. Methods The data of the present study were based on the Participatory Patient Care Planning in Primary Care. A total of 605 patients were recruited in the Siilinjärvi Health Center in the years 2017–2018 from those patients who were followed up due to the treatment of hypertension, ischemic heart disease or diabetes. Patients were randomized into usual care and intervention groups. The intervention consisted of a participatory patient care plan, which was formulated in collaboration with the patient and the nurse and the physician during the first health care visit. Health-related quality of life with the 15D instrument and the disease-specific outcomes of body mass index (BMI), low density lipoprotein cholesterol (LDL-C), hemoglobin A1c (HbA1C) and blood pressure were assessed at the baseline and after a one-year follow-up. Results A total of 587 patients with a mean age of 69 years were followed for 12 months. In the intervention group there were 289 patients (54% women) and in the usual care group there were 298 patients (50% women). During the follow-up there were no significant changes between the groups in health-related quality and disease-specific outcomes. Conclusions During the 12-month follow-up, no significant differences between the intervention and the usual care groups were detected, as the intervention and the usual care groups were already in good therapeutic equilibrium at the baseline. Trial registration ClinicalTrials.gov Identifier: NCT02992431. Registered 14/12/2016

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