Pictorial Representation of Illness and Self‐Measure to assess the perceived burden in patients with chronic inflammatory vulvar diseases: an observational study

2020 ◽  
Vol 34 (11) ◽  
pp. 2645-2651
Author(s):  
M. Corazza ◽  
A. Virgili ◽  
G. Toni ◽  
G. Valpiani ◽  
C. Morotti ◽  
...  
Keyword(s):  
Observational Study ◽  
Pictorial Representation ◽  
Vulvar Diseases ◽  
Perceived Burden

scholarly journals Assessment of the perceived burden associated with Malignant Melanoma with Pictorial Representation of Illness and Self Measure (PRISM) and Melanoma Concerns Questionnaire (MCQ-28)

2022 ◽  
Author(s):  
Alessandro Borghi ◽  
Maria Elena Flacco ◽  
Alberto Monti ◽  
Lucrezia Pacetti ◽  
Michela Tabanelli ◽  
...  
Keyword(s):  
Malignant Melanoma ◽  
Well Being ◽  
Cross Sectional Study ◽  
Pictorial Representation ◽  
Cross Sectional ◽  
Prism Score ◽  
Related Data ◽  
Perceived Burden ◽  
Study Population ◽  
The Impact

Abstract Purpose The impact of malignant melanoma (MM) on patients’ psychophysical well-being has been poorly addressed. We aimed to assess the perceived burden in patients with a diagnosis of MM, using two different tools, one generic and one specific for MM, such as Pictorial Representation of Illness and Self Measure (PRISM) and Melanoma Concerns Questionnaire (MCQ-28), respectively. The correlation between PRISM and MCQ-28 subscales and the relevance of disease and patient-related variables were also investigated. Methods This single-centre, cross-sectional study included all adult consecutive MM patients who attended our Dermatology Unit from December 2020 to June 2021. Demographics and disease-related data were recorded. PRISM and MCQ-28 were administered. Results One hundred and seventy-one patients were included (mean age: 59.5 ±14.9 years.; 48.0% males). Median time from MM diagnosis to inclusion was 36 months. Nearly 80% of the patients had in situ or stage I MM. Overall, 22.2% of the patients reported a PRISM score <100mm and similar percentages provided scores indicating impaired quality of life, as assessed with MCQ-28 subscales. A weak, albeit significant, correlation was found between PRISM scores and ACP, CON and SOC2 subscales. The most relevant association found was that between lower PRISM scores and higher-stage MM. Conclusions In the study population, mostly affected with superficial MM, their perception of the burden associated with MM did not appear either particularly dramatic or disabling. PRISM seems a reliable system for capturing and quantifying the domains correlated with the emotive dimension of MM, especially MM-related concerns and willingness to face life

scholarly journals A Global, Prospective, Observational Study Measuring Disease Burden and Suffering in Patients With Ulcerative Colitis, Using the Pictorial Representation of Illness and Self-measure Tool

2020 ◽  
Author(s):  
Subrata Ghosh ◽  
Tom Sensky ◽  
Francesc Casellas ◽  
Louis-Charles Rioux ◽  
Tariq Ahmad ◽  
...  
Keyword(s):  
Ulcerative Colitis ◽  
Observational Study ◽  
Disease Severity ◽  
Disease Burden ◽  
Prospective Observational Study ◽  
Illness Perception ◽  
Rank Correlation ◽  
Pictorial Representation ◽  
The Impact

Abstract Background The understanding the Impact of ulcerative COlitis aNd Its assoCiated disease burden on patients study [ICONIC] was a 2-year, global, prospective, observational study evaluating the cumulative burden of ulcerative colitis [UC] using the Pictorial Representation of Illness and Self-Measure [PRISM] tool that is validated to measure suffering, but has not previously been used in UC. Methods ICONIC enrolled unselected outpatient clinic attenders with recent-onset UC. Patient- and physician-reported outcomes including PRISM, the Short Inflammatory Bowel Disease Questionnaire [SIBDQ], the Patient Health Questionnaire [PHQ-9], and the Simple Clinical Colitis Activity Indexes [patient: P-SCCAI; physician: SCCAI] were collected at baseline and follow-up visits every 6 months. Correlations between these measures were assessed using Spearman’s rank correlation coefficient. Results Overall, 1804 evaluable patients had ≥1 follow-up visit. Over 24 months, mean [SD] disease severity measured by P-SCCAI/SCCAI reduced significantly from 4.2 [3.6]/3.0 [3.0] to 2.4 [2.7]/1.3 [2.1] [p &lt;0.0001]. Patient-/physician-assessed suffering, quantified by PRISM, reduced significantly over 24 months [p &lt;0.0001]. P-SCCAI/SCCAI and patient-/physician-assessed PRISM showed strong pairwise correlations [rho ≥0.60, p &lt;0.0001], although physicians consistently underestimated these disease severity and suffering measures compared with patients. Patient-assessed PRISM moderately correlated with other outcome measures, including SIBDQ, PHQ-9, P-SCCAI, and SCCAI (rho = ≤-0.38 [negative correlations] or ≥0.50 [positive correlations], p &lt;0.0001). Conclusions Over 2 years, disease burden and suffering, quantified by PRISM, improved in patients with relatively early UC. Physicians underestimated burden and suffering compared with patients. PRISM correlated with other measures of illness perception in patients with UC, supporting its use as an endpoint reflecting patient suffering.

First clinical experience with the Multi-LOC multiple stent delivery system for focal stenting in long femoro-popliteal lesions

VASA ◽  
2017 ◽  
Vol 46 (6) ◽  
pp. 452-461 ◽  
Author(s):  
Klaus Amendt ◽  
Ulrich Beschorner ◽  
Matthias Waliszewski ◽  
Martin Sigl ◽  
Ralf Langhoff ◽  
...  
Keyword(s):  
Observational Study ◽  
Clinical Experience ◽  
Delivery System ◽  
Target Lesion ◽  
Lesion Length ◽  
Elastic Recoil ◽  
Delivery Device ◽  
Clinical Assessments ◽  
Balloon Catheters ◽  
Considerable Length

Abstract. Background: The purpose of this observational study is to report the six-month clinical outcomes with a new multiple stent delivery system in patients with femoro-popliteal lesions. Patients and methods: The LOCOMOTIVE study is an observational multicentre study with a primary endpoint target lesion revascularization (TLR) rate at six months. Femoro-popliteal lesions were prepared with uncoated and/or paclitaxel-coated peripheral balloon catheters. When flow limiting dissections, elastic recoil or recoil due to calcification required stenting, up to six short stents per delivery device, each 13 mm in length, were implanted. Sonographic follow-ups and clinical assessments were scheduled at six months. Results: For this first analysis, a total of 75 patients 72.9 ± 9.2 years of age were enrolled. The majority of the 176 individually treated lesions were in the superficial femoral artery (76.2 %, 134/176) whereas the rate of TASC C/D amounted to 51.1 % (90/176). The total lesion length was 14.5 ± 9.0 cm with reference vessel diameters of 5.6 ± 0.7 mm. Overall 47 ± 18 % of lesion lengths could be saved from stenting. At six months, the patency was 90.7 % (68/75) and all-cause TLR rates were 5.3 % (4/75) in the overall cohort. Conclusions: The first clinical experience at six months suggests that the MSDS strategy was safe and effective to treat femoro-popliteal lesions of considerable length (14.5 ± 9.0 cm). Almost half of the lesion length could be saved from stenting while patency was high and TLR rates were acceptably low.

Perceived Burden of Informal Caregivers of a Chronically Ill Older Family Member

GeroPsych ◽  
2011 ◽  
Vol 24 (3) ◽  
pp. 143-154 ◽  
Author(s):  
Elmar Gräßel ◽  
Raffaela Adabbo
Keyword(s):  
Family Member ◽  
Informal Caregiver ◽  
Chronically Ill ◽  
Stress Model ◽  
The Past ◽  
Perceived Burden ◽  
Hypothetical Construct ◽  
Care Situation ◽  
The Impact ◽  
Further Development

The burden of caregivers has been intensively researched for the past 30 years and has resulted in a multitude of individual findings. This review illustrates the significance of the hypothetical construct of perceived burden for the further development and design of the homecare situation. Following explanations regarding the term informal caregiver, we derive the construct burden from its conceptual association with the transactional stress model of Lazarus and Folkman. Once the extent and characteristics of burden have been set forth, we then present the impact of perceived burden as the care situation. The question of predictors of burden will lead into the last section from which implications can be derived for homecare and relief of caregivers.

Associations Between Informal Caregivers’ Burden and Educational Level

GeroPsych ◽  
2019 ◽  
Vol 32 (1) ◽  
pp. 19-29 ◽  
Author(s):  
Monika Oedekoven ◽  
Katja Amin-Kotb ◽  
Paul Gellert ◽  
Klaus Balke ◽  
Adelheid Kuhlmey ◽  
...  
Keyword(s):  
Support Services ◽  
Educational Level ◽  
Autonomy Support ◽  
Population Survey ◽  
Multivariate Analyses ◽  
Informal Caregivers ◽  
Loss Of Self ◽  
Perceived Burden ◽  
Result Show ◽  
Care Situation

Abstract. We investigated the association between the education of informal caregivers’ (IC) and their physical and mental burden. We hypothesized that better-educated IC would have more resources available to manage the care situation and as a result show lower perceived burden. We conducted a population survey of 6,087 German residents aged 18+ years, 966 of whom reported to be IC. Results show that IC felt more often mentally than physically burdened. In the multivariate analyses, higher-educated IC did not have lower odds of feeling physically burdened than lower-educated IC, though they did have increased odds of feeling mentally burdened. The higher perceived mental burden of higher-educated IC may be related to fear of loss of self-fulfilment and autonomy. Support services should consider the mental burden of higher-educated IC and tailor their interventions accordingly.

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