Background
Presently, no validated data exist on symptom severity and disease‐specific quality‐of‐life (QoL) for patients with mastocytosis. Simultaneously, clinical trials and drug application ...processes increasingly mandate reporting patients’ perspectives on symptoms and QoL. We report on the development and validation of the mastocytosis quality‐of‐life questionnaire (MQLQ) and the mastocytosis symptom assessment form (MSAF).
Methods
Both outcome measures were developed in a standardized stepwise method, starting with the identification of items in focus groups (n = 12), item reduction and subsequent cross‐sectional validation in a 63% female cohort of 164 adult patients with indolent systemic mastocytosis.
Results
The MSAF reveals that fatigue is the severest mastocytosis symptom while the MQLQ indicates that fear of anaphylaxis mostly impacts QoL. Cross‐sectional validity was assessed by correlating both individual domains and the total scores of the MQLQ and MSAF with independent measures of mastocytosis. The total scores of both the MQLQ (P < 0.001; Spearman's r: 0.568) and the MSAF (P < 0.001; Spearman's r: 0.559) correlated significantly with the consensus on physician‐scored mediator symptoms. The MQLQ domains displayed a high internal consistency (Cronbach's alpha: 0.841–0.958) and the domains ‘bones’, ‘skin symptoms’ and ‘anaphylaxis’ differed significantly between patients with and without osteoporosis, urticaria pigmentosa or anaphylaxis, respectively (P < 0.001).
Conclusions
The MQLQ is the first disease‐specific QoL questionnaire for mastocytosis and is complemented by the MSAF, a short and convenient symptom scoring form. Both patient‐reported outcome measures are valid, reliable and discriminate between patients with different disease characteristics, making them useful instruments for clinical research.
The aim of the study was to compare the inter-rater reliability, concurrent validity, completion time, and ease of use of two methodological quality (MQ) assessment tools for cross-sectional studies: ...an adapted Newcastle–Ottawa Scale (NOS) and the Appraisal Tool for Cross-Sectional Studies (AXIS).
Two raters applied the NOS and AXIS to 63 cross-sectional studies of health-related quality of life and breast cancer.
AXIS demonstrated poor inter-rater reliability (intraclass correlation coefficient ICC = 0.49) and required more than double the amount of time to complete compared with the NOS, which demonstrated moderate reliability (ICC = 0.73). For concurrent validity, weak and moderate positive relationships existed between NOS and AXIS (rater 1: r = 0.26; rater 2: r = 0.45). Ease of using the tools was affected by the indirectness of MQ assessments, perceived thoroughness of the tools’ content, and user experience.
This study was the first to assess the psychometric properties of a cross-sectional NOS and AXIS. The results did not support a clear choice between selecting either tool for evaluating MQ in cross-sectional studies.
IntroductionHiccups are involuntary, spasmodic contractions of the diaphragm and intercostal muscles that cause inspiration and are interrupted by closure of the glottis. Most sources define the term ...“persistent hiccups” as lasting more than 2 days and “intractable” as lasting more than 1 month. Both are most likely associated with a pathologic process. “Intractable hiccups” should lead to investigation of organic pathology. If it does not improve, it can interfere with the patient’s ability to eat, socialize and sleep, leading to a significant worsening of quality of life. “Intractable hiccups” are more frequent in men (91%), over 50 years of age. Women suffer from psychogenic hiccups more frequently than men. Anxiety or stress can trigger hiccups. Multiple neurotransmitters are involved.ObjectivesWe present a theoretical review on the topic.MethodsA bibliographic review on the topic.ResultsIn recent years, new trials and case series have been published, and regulatory agencies have issued new recommendations on the use of pharmacologic agents for this indication. The literature has described the efficacy of several pharmacologic agents in the empiric treatment of persistent and intractable hiccups. Most of these target dopaminergic and GABAergic receptors.Based on limited efficacy and safety data, Baclofen and Gabapentin can be considered as first-line treatment for intractable and persistent hiccups, as they suggest efficacy and are less likely to cause long-term side effects than standard neuroleptic agents. Dopamine blocking agents such as Metoclopramide, Chlorpromazine, and Haloperidol, could be used as second line. In one study, withdrawal of Benzodiazepines or addition of Pregabalin was found to help reduce hiccups.The patient we consulted came for persistent hiccups or singultus of 2 years of evolution. Organic pathology was ruled out. She related the onset of the symptoms to different stressors that had caused her anxiety. We administered Escitalopram and Gabapentin and indicated withdrawal of Bromazepam, which she started taking months ago. In follow-up appointments she reported a decrease in the intensity and frequency of the symptoms, with a notable improvement in her quality of life.ConclusionsConsidering all available evidence, a treatment algorithm with Baclofen is recommended as first-line therapy for persistent and intractable hiccups. Gabapentin may also be safe and effective in the long-term treatment of this condition, especially for patients with CNS disease. Metoclopramide is no longer recommended for long-term treatment of hiccups. Clinical experience also supports the use of Chlorpromazine and other neuroleptics for acute, but not long-term, treatment. Going forward, large multicenter studies will be needed to create an adequate evidence base for the treatment of persistent and intractable hiccups. Until then, guidelines will continue to be based on unreliable data and clinical experience.Disclosure of InterestNone Declared
IntroductionAnkylosing spondylitis (AS) is one of the most common inflammatory rheumatisms. It is a chronic, sometimes disabling and it could cause both physical and psychological problems among ...patients, including depression.ObjectivesWith this in mind, the objective of our work was to study the prevalence of depression among patients with AS and to determine its associated factors.MethodsThis was a retrospective descriptive and analytical study, carried out in 2021 over a period of 5 years in southern Tunisia on patients with a confirmed diagnosis of AS established in accordance with the ASAS diagnostic criteria (Assessment of Spondyloarthritis International Society) or the modified New York criteria for AS. Depression was assessed using the Hospital anxiety and Depression (HAD) score. A HAD score>10 means certain depression.ResultsA total of 62 patients were included in our study. The median age was 39 years with an interquartile range (IQR) = 32-50 years. There were 35 men (56.5%). Inflammatory back pain was noted among 51 patients (82.3%). Extraarticular manifestations were noted among 14 cases (22.6%) and were mainly ocular (11 cases; 78.4%). The diagnosis was confirmed by ASAS criteria in 55 cases (88.7%). AS was treated symptomatically in 58 cases (93.5%), specifically by basic treatment among 17 patients (27.4%) and by additional physical rehabilitation among 15 patients (24.2%). Depression was certain among 30 patients, giving a global prevalence of 48.4%. The factors statistically associated with this disease among patients with AS were having a low level of education (illiterate or primary) (Odds Ratio (OR) = 2.87; p = 0.044), being clinically suffering from severe fatigue (OR= 7.14; p<0.001), have a poor quality of life Ankylosing spondylitis quality of life questionnaire (Asqol) Score ≥13 (OR=4.52; p=0.007) and have certain anxiety (HAD>10) (OR=19; p<0.001).ConclusionsIn addition to its clinical impact on patients, the psychological impact of AS was considerable in terms of depression. The factors associated with it were individual, clinical, and psychological. Thus, psychological support must be coupled with AS medical management in order to prevent psychological disorders among patients, particularly depression.Disclosure of InterestNone Declared
Background
Quality of life is a phenomenon that recently required lots of concern, especially for older adults, since healthy aging and longevity have become the focus in life. Most research on the ...quality of life addresses certain issues of older people having special diseases, health problems, and disorders. Our research is based on holistic quality of life empowering multiple areas of life/domains of older adults without addressing their diseases or health disorders.
Aim
Our research aims at evaluating the quality of life of the research participants (older people), addressing their problematic areas and suggestions for better quality of life.
Methods
The conducted research implied mixed methods as quantitative survey and reflection based on interviews. We chose participants from the III age university and the ongoing project “Healthy Aging Program”.
Results
The research results showed the lowest ratings for emotional and physical health and the highest rating for social health. Also, older adults tend to avoid specifying precise measures to improve their quality of life and demonstrate a more conservative stance regarding the implementation of more radical changes in improving water consumption, exercising, meal planning, and enhancing psychosocial well-being.
Conclusions
The overall quality of life rating was lower than the average. Older adults are not sufficiently prepared or educated to make significant changes to develop healthier habits in their quality-of-life improvement, though, they demonstrate concern about their quality of life.
The Quality of Life after Brain Injury (QOLIBRI) score was developed to assess disease-specific health-related quality of life (HRQoL) after traumatic brain injury (TBI). So far, validation studies ...on the QOLIBRI were only conducted in cohorts with traumatic brain injury. This study investigated the longer-term residuals in severely injured patients, focusing specifically on the possible impact of major TBI.
In a prospective questionnaire investigation, 199 survivors with an injury severity score (ISS) > 15 participated in one-year follow-up. Patients who had sustained major TBI (abbreviated injury scale, AIS head > 2) were compared with patients who had no or only mild TBI (AIS head ≤ 2). Univariate analysis (ANOVA, Cohen's kappa, Pearson's r) and stepwise linear regression analysis (B with 95% CI, R, R
) were used.
The total QOLIBRI revealed no differences in one-year outcomes between patients with versus without major TBI (75 and 76, resp.; p = 0.68). With regard to the cognitive subscore, the group with major TBI demonstrated significantly more limitations than the one with no or mild TBI (p < 0.05). The AIS head correlated significantly with the cognitive dimension of the QOLIBRI (r = - 0.16; p < 0.05), but not with the mental components of the SF-36 or the TOP. In multivariate analysis, the influence of the severity of head injury (AIS head) on total QOLIBRI was weaker than that of injured extremities (R
= 0.02; p < 0.05 vs. R
= 0.04; p = 0.001) and equal to the QOLIBRI cognitive subscore (R
= 0.03, p < 0.01 each).
Given the unexpected result of similar mean QOLIBRI total score values and only minor differences in cognitive deficits following major trauma independently of whether patients sustained major brain injury or not, further studies should investigate whether the QOLIBRI actually has the discriminative capacity to detect specific residuals of major TBI. In effect, the score appears to indicate mental deficits following different types of severe trauma, which should be evaluated in more detail.
NCT02165137 ; retrospectively registered 11 June 2014.
Celotno besedilo
Dostopno za:
DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK
Background:
The symptoms that have the largest impact on health-related quality of life (HRQoL) in people with multiple sclerosis (MS) may vary by MS phenotype (relapsing-remitting MS (RRMS), ...secondary progressive MS (SPMS) and primary progressive MS (PPMS)). Knowing these symptoms assists in symptom management.
Objective:
To examine the associations between 13 common MS symptoms and HRQoL in the total sample and stratified by MS phenotype.
Method:
The study included 1985 participants. HRQoL was measured with two multi-attribute utility instruments: assessment of quality of life with eight dimensions (AQoL-8D) and European quality of life with five dimensions and five levels for each dimension (EQ-5D-5L). Multivariable linear regression was used to identify the symptoms that had the largest impact on the HRQoLs.
Results:
Feelings of depression, pain, fatigue, and feelings of anxiety were most strongly associated with AQoL-8D and EQ-5D-5L. Walking difficulties additionally contributed to reduced EQ-5D-5L. The strongest single predictors in the multivariable analyses were feelings of depression or pain for AQoL-8D and walking difficulties for EQ-5D-5L, irrespective of MS phenotype.
Conclusion:
The strongest single predictors for the AQoL-8D and EQ-5D-5L were feelings of depression, pain and walking difficulties, irrespective of MS phenotype. Reducing these symptoms may have the largest impact on improving HRQoL in all MS phenotypes of people with MS.
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