scholarly journals Clinical evaluation of pulmonary hypertension using patient-reported outcomes: a cross-sectional study

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Miguel Ángel Amor-García ◽  
Sara Ibáñez-García ◽  
Xandra García-González ◽  
Teresa Mombiela ◽  
Cristina Villanueva-Bueno ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Pulmonary Hypertension ◽  
Clinical Evaluation ◽  
Patient Reported Outcomes ◽  
Specific Treatment ◽  
Tertiary Hospital ◽  
Functional Class ◽  
Cross Sectional ◽  
Patient Reported

Abstract Background Patients with pulmonary hypertension (PH) have progressive and disabling symptoms, as well as a burden of treatments and a difficult clinical evaluation that make health-related quality of life a particularly relevant endpoint in this disease. The objective of the study was to evaluate patient-reported outcomes of patients receiving specific treatment for PH in a tertiary hospital using a specific questionnaire (Cambridge Pulmonary Hypertension Outcome Review-CAMPHOR) in the pharmacy consultation. Methods A cross-sectional, observational, descriptive study was conducted. It included all patients receiving specific treatment for PH in a tertiary hospital in Madrid, Spain. The inclusion period comprised between August to December 2019. CAMPHOR questionnaires containing three domains: symptoms, activities and quality of life were completed by the patients at the pharmacy consultation. Demographic and clinical variables, including WHO Functional Class (WHO FC), PH-specific tests and hemodynamic parameters, were recorded. Non-parametric analyses to assess relations between variables and CAMPHOR domains were performed. Results Thirty-six patients consented to participate in the study and completed the questionnaire. Median scores for symptoms, activities, and quality of life domains were 5.5 (2.5–10), 8.0 (4.5–10.5) and 3.5 (1–7.5), respectively. Statistically significant differences were found in the three domains when comparing by WHO FC, in the activities domain for 6-m walking test and in the quality of life domain for patients who had emergency visits or hospitalizations in the last year. Conclusions The CAMPHOR questionnaire could be useful as a complementary test to achieve an integrated evaluation of PH patients, who could complete it easily during their routine pharmacy visits.

scholarly journals Gastrointestinal Symptoms of and Psychosocial Changes in Inflammatory Bowel Disease: A Nursing-Led Cross-Sectional Study of Patients in Clinical Remission

Medicina ◽  
2020 ◽  
Vol 56 (1) ◽  
pp. 45 ◽  
Author(s):  
Rosellina Margherita Mancina ◽  
Raffaele Pagnotta ◽  
Caterina Pagliuso ◽  
Vincenzo Albi ◽  
Daniela Bruno ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Patient Reported Outcomes ◽  
Gastrointestinal Symptoms ◽  
Cross Sectional Study ◽  
Sectional Study ◽  
Cross Sectional ◽  
Patient Reported ◽  
Inflammatory Bowel ◽  
The Impact

Background and Objectives: Nursing management in Inflammatory Bowel Disease (IBD) is focused on global patient care. Starting from basic knowledge of diagnostic and therapeutic management, nurses can assess the impact of IBD on patients’ quality of life not only at the physical level, but also at the psychological, social, and emotional levels. The aim of this study was to evaluate the impact of gastrointestinal symptoms on psychosocial changes in IBD patients in remission through nursing-led Patient-Reported Outcomes. Materials and Methods: We performed a cross-sectional study of 109 IBD patients in clinical and endoscopic remission. Specialist nurses invited patients to complete questionnaires on gastrointestinal symptoms and quality of life through the Patient-Reported Outcomes Measurement Information System (PROMIS). Results: We found that the gastrointestinal symptoms that the patients reported had a significant impact on the analyzed aspects of health. More specifically, belly pain, diarrhea, and bloating were associated with depressive symptoms (p < 0.001), anxiety (p < 0.001), fatigue (p < 0.001), and sleep disturbances (p < 0.001). Moreover, these symptoms also significantly affected patients’ social dimension in terms of satisfaction with participation in social roles (p < 0.001, p < 0.05, and p < 0.001 for belly pain, diarrhea, and bloating, respectively) and physical functions (p < 0.001). The results were virtually the same in a multivariable analysis adjusted by age, gender, body mass index (BMI), and disease duration. Conclusions: Even during remission, gastrointestinal symptoms are the main factors that influence quality of life in IBD patients. This exploratory study highlights the need to adopt validated questionnaires in clinical practice, and demonstrates that PROMIS is a valid, objective, and standardized instrument that can help nursing staff to better define the consequences of the disease in a patient’s daily life.

Health Utility during the First Two Years of Treatment of Hematological Malignancies

Blood ◽  
2016 ◽  
Vol 128 (22) ◽  
pp. 3608-3608
Author(s):  
Sonya Cressman ◽  
Mary Lynn Savoie ◽  
Stephen Couban ◽  
Emily McPherson ◽  
Alexa Evans ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Clinical Study ◽  
Patient Reported Outcomes ◽  
Health Utility ◽  
Remission Induction ◽  
Health States ◽  
Cross Sectional ◽  
Time Points ◽  
Patient Reported

Abstract Background There are limited patient reported outcomes for acute myeloid leukemia (AML) and myelodysplastic syndrome (MDS) due to relatively low incidence rates and disease severity. Patient reported outcomes on health utility, a measure of quality of life weighted to the preferences of the general population, are however required for economic evaluation of interventions to diagnose and treat the diseases. This study was designed to report health utility outcomes from patients during their treatment for AML and MDS, for the first time. We sought to use the infrastructure of a multicentre study to report these outcomes in an otherwise inaccessible patient population and enable more accurate economic models. Methods Following institutional research ethics board approval at six recruiting study centres across Canada, the Euroqol five dimensions (EQ5D) health utility instrument and socio-demographic questionnaires were administered by telephone or in person to eligible participants in a national clinical study (NCT01685619). These data were linked to the treatment outcomes and health state transitions of each participant during their treatment of AML or MDS. A longitudinal analysis of treatment effects and cross-sectional regression analyses were undertaken for data collected at four, quarterly time points over the first year following diagnosis, and two semi-annual points over the second year. We defined health utility for specific economic health states and the co-varying impacts from socio-demographic characteristics and treatment-related impacts. Results At least one quality of life questionnaire was returned for 131 (96%) of the eligible patients who participated in the study. Response rates were greater than 60% at each of the scheduled time points. The median overall survival (468 days; 95% CI: 353-660) was reached over the 24 month term of follow-up. The most preferred health states involved greater than 12 months of survival (health utility > 0.78); the least preferred health states were reported for failed treatments and an initial AML diagnosis (health utility < 0.63). There were no significant differences found among utility outcomes that could be related to consolidation modality or remission induction intent. AML patients with 24 months of survival gained 0.037 more quality adjusted life years (QALYs) than MDS patients with equivalent survival time. An ordinary least squares regression model on the cross-sectional data suggests that having an MDS diagnosis was associated with a better short-term health utility while long term outcomes were greater for patients who survived 24 months after being diagnosed with AML (p<0.1). Conclusions This report on health utility outcomes was made possible only by collaboration with health economists and the infrastructure of a multicentre clinical study. The data suggest that survivors following 24 months of treatment for AML gained more QALYs than the survivors of MDS. The findings warrant further investigation due to the suggestion of equivalent health utility between treatments and to further validate the use of the EQ5D instrument in this disease area. Disclosures Savoie: Jazz: Consultancy; Lundbeck: Consultancy; Amgen: Consultancy; BMS: Consultancy, Honoraria; Novartis: Consultancy, Honoraria; Pfizer: Consultancy; Celgene: Consultancy.

scholarly journals Quality of Life After Bladder Cancer: A Cross-sectional Survey of Patient-reported Outcomes

2021 ◽  
Vol 79 (5) ◽  
pp. 621-632 ◽  
Author(s):  
James W.F. Catto ◽  
Amy Downing ◽  
Samantha Mason ◽  
Penny Wright ◽  
Kate Absolom ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Bladder Cancer ◽  
Patient Reported Outcomes ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Patient Reported

P048 QUALITY OF LIFE AND OTHER PATIENT REPORTED OUTCOMES IN PATIENTS WITH POUCHITIS

2020 ◽  
Vol 158 (3) ◽  
pp. S107
Author(s):  
Edward Barnes ◽  
Millie Long ◽  
Laura Raffals ◽  
Xian Zhang ◽  
Anuj Vyas ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Patient Reported Outcomes ◽  
Patient Reported

Understanding quality of life and treatment history of patients with Bertolotti syndrome compared with lumbosacral radiculopathy

2019 ◽  
Vol 31 (2) ◽  
pp. 222-228 ◽  
Author(s):  
Joshua L. Golubovsky ◽  
Arbaz Momin ◽  
Nicolas R. Thompson ◽  
Michael P. Steinmetz
Keyword(s):  
Quality Of Life ◽  
Mental Health ◽  
Propensity Score ◽  
Disc Herniation ◽  
Symptom Onset ◽  
Patient Reported Outcomes ◽  
Lumbosacral Radiculopathy ◽  
Patient Reported ◽  
Age And Sex

OBJECTIVEBertolotti syndrome is a rare spinal condition that causes low-back pain due to a lumbosacral transitional vertebra (LSTV), which is a pseudoarticulation between the fifth lumbar transverse process and the sacral ala. Bertolotti syndrome patients are rarely studied, particularly with regard to their quality of life. This study aimed to examine the quality of life and prior treatments in patients with Bertolotti syndrome at first presentation to the authors’ center in comparison with those with lumbosacral radiculopathy.METHODSThis study was a retrospective cohort analysis of patients with Bertolotti syndrome and lumbosacral radiculopathy due to disc herniation seen at the authors’ institution’s spine center from 2005 through 2018. Diagnoses were confirmed with provider notes and imaging. Variables collected included demographics, diagnostic history, prior treatment, patient-reported quality of life metrics, and whether or not they underwent surgery at the authors’ institution. Propensity score matching by age and sex was used to match lumbosacral radiculopathy patients to Bertolotti syndrome patients. Group comparisons were made using t-tests, Fisher’s exact test, Mann-Whitney U-tests, Cox proportional hazards models, and linear regression models where variables found to be different at the univariate level were included as covariates.RESULTSThe final cohort included 22 patients with Bertolotti syndrome who had patient-reported outcomes data available and 46 propensity score–matched patients who had confirmed radiculopathy due to disc herniation. The authors found that Bertolotti syndrome patients had significantly more prior epidural steroid injections (ESIs) and a longer time from symptom onset to their first visit. Univariate analysis showed that Bertolotti syndrome patients had significantly worse Patient-Reported Outcomes Measurement Information System (PROMIS) mental health T-scores. Adjustment for prior ESIs and time from symptom onset revealed that Bertolotti syndrome patients also had significantly worse PROMIS physical health T-scores. Time to surgery and other quality of life metrics did not differ between groups.CONCLUSIONSPatients with Bertolotti syndrome undergo significantly longer workup and more ESIs and have worse physical and mental health scores than age- and sex-matched patients with lumbosacral radiculopathy. However, both groups of patients had mild depression and clinically meaningful reduction in their quality of life according to all instruments. This study shows that Bertolotti syndrome patients have a condition that affects them potentially more significantly than those with lumbosacral radiculopathy, and increased attention should be paid to these patients to improve their workup, diagnosis, and treatment.

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