scholarly journals Patient-Reported Outcomes of Ugandans Living with Autoimmune Rheumatic Diseases

2021 ◽  
Author(s):  
Felix Bongomin ◽  
Maria Sekimpi ◽  
Barbra Natukunda ◽  
Anthony Makhoba ◽  
Mark Kaddumukasa
Keyword(s):  
Health Status ◽  
Rheumatic Diseases ◽  
Patient Reported Outcomes ◽  
Health Index ◽  
Drug Reactions ◽  
Herbal Medication ◽  
Self Rated Health ◽  
Autoimmune Rheumatic Diseases ◽  
Patient Reported

AbstractPurposeThis study aimed to assess the patient–reported outcomes (PROs) in rheumatic patients attending two tertiary rheumatology clinics in Uganda.MethodsA cross-sectional, clinical audit of patients aged 16 years or older with a confirmed diagnosis of rheumatic disease and receiving disease modifying anti-rheumatic drugs (DMARDs) was conducted between September and December 2020. Health index and overall self-rated health status were assessed using the ED-5D-5L tool. Comparisons for variables was performed using Student’s t-test or Mann-Whitney U for continuous numerical data while categorical data was compared using either Χ2 tests or Fisher’s exact tests as appropriate.ResultsWe enrolled 74 eligible patients: 48 (64.9%) had rheumatoid arthritis (RA), 14 (18.9%) had systemic lupus erythematosus (SLE), and 12 (16.2%) had other autoimmune rheumatic disorders. Majority (n=69, 93.2%) were female with a mean ±SD age of 45 ± 17 years. Fourteen (18.9%) patients were on concomitant herbal medication while using DMARDs and 26 (35.1%) self-reported at least 1 adverse drug reactions to the DMARDS. Any level of problem was reported by 54 (72.5%) participants for mobility, 47 (63.5%) for self-care, 56 (75.6%) for usual activity, 66 (89.1%) for pain and discomfort, and 56 (75.6%) for anxiety/depression. Patients with SLE had higher median health index compared to those other autoimmune rheumatic disorders (p<0.0001). Overall self-rated health status was comparable across clinical diagnoses (p=0.2), but better for patients who received care from private (Nsambya Hospital) compared to public hospital (Mulago Hospital) (65 vs. 50, p=0.009).ConclusionThere is a substantial negative impact of autoimmune rheumatic diseases on quality of life of patients, especially those receiving care from a public facility in Uganda.Clinical SignificanceAdverse drug reactions to DMARDs was reported by more than one-third of the patientsSLE patients have better quality of life compared to patients with other autoimmune rheumatic disease.Concomitant use of herbal medication is common and associated with lower health index and lower overall self-rated health status.Autoimmune rheumatic diseases impose a heavy financial burden on affected patients, over 70% of the study patients required financial support for management of their disease and a high proportion of these patients were not on their DMARD therapy the week prior to their scheduled clinic appoints.

Health-related quality of life/patient-reported outcomes in relapsed ovarian cancer: Results from a randomized phase III study of trabectedin with pegylated liposomal doxorubicin (PLD) versus PLD alone

2009 ◽  
Vol 27 (15_suppl) ◽  
pp. 5526-5526
Author(s):  
C. N. Krasner ◽  
A. Poveda ◽  
T. Herzog ◽  
J. Vermorken ◽  
B. Monk ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Ovarian Cancer ◽  
Health Status ◽  
Patient Reported Outcomes ◽  
Phase Iii ◽  
Gi Symptoms ◽  
Patient Reported ◽  
Phase Iii Study ◽  
The Impact

5526 Background: In an open-label, multicenter, randomized phase III study comparing the combination of trabectedin and PLD to PLD alone in patients with relapsed ovarian cancer, the combination demonstrated significantly improved progression free survival and response rates, manageable non-cumulative toxicity, and fewer PLD-associated adverse events. We studied the impact of the combination of trabectedin with PLD on the quality of life (QoL)/patient-reported outcomes (PRO) evaluated as part of the trial. Methods: QoL/PRO questionnaires, EORTC-QLQ C30, OV28, and EQ-5D were completed by patients at screening and on Day 1 of every other treatment cycle starting with Cycle 1, and at the end-of-treatment visit. Global health status/QoL, fatigue, rain subscales from QLQ C30, and abdominal pain/GI symptoms scale from OV28 were chosen a priori for primary analyses. Other scales of the three questionnaires were analyzed on a supportive basis. Results: A total of 672 patients were randomized. 663 (98%) completed at least the baseline questionnaires. Median cycles of treatment was 6 (131 days) for the combination arm and 5 (143 days) for the monotherapy arm. Mixed effects models (using a covariance structure of AR[1]) predicting the score at baseline and follow-up scores as a function of treatment, days after baseline, and interaction between treatment and days after baseline showed no significant differences between the treatment arms for any of the prespecified scales. Similar analyses of other scales, including EQ-5D Health Index scores and Health State on the Visual Analog Scale, support the findings. Conclusions: The addition of trabectedin to PLD results in superior efficacy in patients with relapsed ovarian cancer, with no added decrement to overall health status as assessed by PRO. [Table: see text]

scholarly journals Using Patient-Reported Outcomes to Assess Healthcare Quality: Toward Better Measurement of Patient-Centered Care in Cardiovascular Disease

2021 ◽  
pp. e1-e9
Author(s):  
Raul Angel Garcia ◽  
John A Spertus
Keyword(s):  
Health Status ◽  
Patient Reported Outcomes ◽  
Health Management ◽  
Clinical Care ◽  
Healthcare Quality ◽  
Patient Centered Care ◽  
Patient Centered ◽  
Patient Reported ◽  
Centered Care

Patient-reported outcomes (PROs) are elicited directly from patients so they can describe their overall health status, including their symptoms, function, and quality of life. While commonly used as end points in clinical trials, PROs can play an important role in routine clinical care, population health management, and as a means for quantifying the quality of patient care. In this review, we propose that PROs be used to improve patient-centered care in the treatment of cardiovascular diseases given their importance to patients and society and their ability to improve doctor- provider communication. Furthermore, given the current variability in patients’ health status across different clinics and the fact that PROs can be improved by titrating therapy, we contend that PROs have a key opportunity to serve as measures of healthcare quality.

scholarly journals Self-efficacy as a predictor of patient-reported outcomes in adults with congenital heart disease

2018 ◽  
Vol 17 (7) ◽  
pp. 619-626 ◽  
Author(s):  
Corina Thomet ◽  
Philip Moons ◽  
Markus Schwerzmann ◽  
Silke Apers ◽  
Koen Luyckx ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Congenital Heart Disease ◽  
Heart Disease ◽  
Health Status ◽  
Self Efficacy ◽  
Patient Reported Outcomes ◽  
Congenital Heart ◽  
Health Behaviours ◽  
Patient Reported

Objective: Self-efficacy is a known predictor of patient-reported outcomes in individuals with acquired diseases. With an overall objective of better understanding patient-reported outcomes in adults with congenital heart disease, this study aimed to: (i) assess self-efficacy in adults with congenital heart disease, (ii) explore potential demographic and medical correlates of self-efficacy and (iii) determine whether self-efficacy explains additional variance in patient-reported outcomes above and beyond known predictors. Methods: As part of a large cross-sectional international multi-site study (APPROACH-IS), we enrolled 454 adults (median age 32 years, range: 18–81) with congenital heart disease in two tertiary care centres in Canada and Switzerland. Self-efficacy was measured using the General Self-Efficacy (GSE) scale, which produces a total score ranging from 10 to 40. Variance in the following patient-reported outcomes was assessed: perceived health status, psychological functioning, health behaviours and quality of life. Hierarchical multivariable linear regression analysis was performed. Results: Patients’ mean GSE score was 30.1 ± 3.3 (range: 10–40). Lower GSE was associated with female sex ( p = 0.025), not having a job ( p = 0.001) and poorer functional class ( p = 0.048). GSE positively predicted health status and quality of life, and negatively predicted symptoms of anxiety and depression, with an additional explained variance up to 13.6%. No associations between self-efficacy and health behaviours were found. Conclusions: GSE adds considerably to our understanding of patient-reported outcomes in adults with congenital heart disease. Given that self-efficacy is a modifiable psychosocial factor, it may be an important focus for interventions targeting congenital heart disease patients’ well-being.

scholarly journals Towards patient-centred care in Ghana: health system responsiveness, self-rated health and experiential quality in a nationally representative survey

2020 ◽  
Vol 9 (2) ◽  
pp. e000886 ◽  
Author(s):  
Hannah L Ratcliffe ◽  
Griffith Bell ◽  
Koku Awoonor-Williams ◽  
Asaf Bitton ◽  
June-Ho Kim ◽  
...  
Keyword(s):  
Quality Of Care ◽  
Patient Experience ◽  
Patient Reported Outcomes ◽  
World Health ◽  
Self Rated Health ◽  
Experience Of Care ◽  
Essential Components ◽  
Patient Reported ◽  
Nationally Representative

IntroductionPerson-centredness, including patient experience and satisfaction, is a foundational element of quality of care. Evidence indicates that poor experience and satisfaction are drivers of underutilisation of healthcare services, which in turn is a major driver of avoidable mortality. However, there is limited information about patient experience of care at the population level, particularly in low-income and middle-income countries.MethodsA multistage cluster sample design was used to obtain a nationally representative sample of women of reproductive age in Ghana. Women were interviewed in their homes regarding their demographic characteristics, recent care-seeking characteristics, satisfaction with care, patient-reported outcomes, and—using questions from the World Health Survey Responsiveness Module—the seven domains of responsiveness of outpatient care to assess patient experience. Using Poisson regression with log link, we assessed the relationship between responsiveness and satisfaction, as well as patient-reported outcomes.ResultsWomen who reported more responsive care were more likely to be more educated, have good access to care and have received care at a private facility. Controlling for respondent and visit characteristics, women who reported the highest responsiveness levels were significantly more likely to report that care was excellent at meeting their needs (prevalence ratio (PR)=13.0), excellent quality of care (PR=20.8), being very likely to recommend the facility to others (PR=1.4), excellent self-rated health (PR=4.0) and excellent self-rated mental health (PR=5.1) as women who reported the lowest responsiveness levels.DiscussionThese findings support the emerging global consensus that responsiveness and patient experience of care are not luxuries but essential components of high-performing health systems, and highlight the need for more nuanced and systematic measurement of these areas to inform priority setting and improvement efforts.

scholarly journals Quality of Life in Patients With Rectal Resections and End-to-End Primary Anastomosis Using a Standardized Perioperative Pathway

2022 ◽  
Vol 8 ◽  
Author(s):  
Jonas Herzberg ◽  
Shahram Khadem ◽  
Valentin Begemann ◽  
Tim Strate ◽  
Human Honarpisheh ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Health Status ◽  
Global Health ◽  
Patient Reported Outcomes ◽  
Global Health Status ◽  
Lars Score ◽  
Patient Reported ◽  
End To End ◽  
Fail Safe

Objectives: Lower rectal resection is associated with a high rate of postoperative complications and, therefore, adversely impacts the postoperative health-related quality of life (QoL). Though sporadically practiced in different centers, there is no standard perioperative protocol for the management of patients with rectal growths. The aim of this analysis is to evaluate the patient-reported outcomes after low rectal resections followed by an end-to-end-reconstruction and temporary covering ileostomy using a multidisciplinary fail-safe-concept.Methods: Between 2015 and 2020, we evaluated patient reported outcomes after open and laparoscopic rectal resections with end-to-end reconstruction with a primary straight anastomosis using a standardized perioperative pathway All patients with stoma were excluded from the study. The data for the QoL of patients was collected using the established Low Anterior Resection Syndrome (LARS)-score and the EORTC-C30 and CR-29 questionnaires at a single postoperative timepoint.Results: We recruited 78 stoma-free patients for this analysis. Of 78 patients included in the study, 87.2% were operated laparoscopically and the mean global health status was 67.95 points, while a major LARS was detected in 48 (61.5%) patients. No anastomotic leakage (AL) occurred within the study cohort. There was no significant change in the LARS-score or the global health status depending on the follow-up-period.Conclusion: This study shows that good QoL and functional outcomes with no AL are achievable following end-to-end straight anastomosis using a standardized perioperative surgical fail-safe protocol procedure.

scholarly journals Effect of Ruxolitinib Therapy on Myelofibrosis-Related Symptoms and Other Patient-Reported Outcomes in COMFORT-I: A Randomized, Double-Blind, Placebo-Controlled Trial

2013 ◽  
Vol 31 (10) ◽  
pp. 1285-1292 ◽  
Author(s):  
Ruben A. Mesa ◽  
Jason Gotlib ◽  
Vikas Gupta ◽  
John V. Catalano ◽  
Michael W. Deininger ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Health Status ◽  
Patient Reported Outcomes ◽  
Spleen Volume ◽  
Double Blind ◽  
Double Blind Placebo ◽  
Patient Reported ◽  
Eortc Qlq C30 ◽  
Eortc Qlq

Purpose To assess the effects of ruxolitinib on symptom burden and quality of life (QoL) and to evaluate the ability of the modified Myelofibrosis Symptom Assessment Form (MFSAF) v2.0 to measure meaningful changes in myelofibrosis-related symptoms in patients with myelofibrosis. Patients and Methods COMFORT-I (Controlled Myelofibrosis Study With Oral JAK Inhibitor Treatment–I) is a double-blind, placebo-controlled phase III study evaluating ruxolitinib in patients with intermediate-2 or high-risk myelofibrosis. Exploratory analyses were conducted on the following patient-reported outcomes (PROs) assessments: modified MFSAF v2.0 (individual symptoms and Total Symptom Score [TSS]), European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire-Core 30 (EORTC QLQ-C30), Patient Reported Outcomes Measurement Information System (PROMIS) Fatigue Scale, and Patient Global Impression of Change (PGIC). Results Patients receiving ruxolitinib experienced improvements in individual myelofibrosis-related symptoms, although patients receiving placebo experienced worsening (P < .001). The majority (91%) of ruxolitinib-treated patients designated as ≥ 50% TSS responders (≥ 50% TSS improvement) self-reported their condition as either “Much improved” or “Very much improved” on the PGIC. These patients achieved significant improvements in the EORTC QLQ-C30 functional domains and Global Health Status/QoL versus patients receiving placebo, who experienced worsening on these measures (P ≤ .0135). Ruxolitinib-treated patients with a lesser degree of symptom improvement (< 50% TSS responders) also achieved improvements over placebo on these measures. The degree of spleen volume reduction with ruxolitinib correlated with improvements in TSS, PGIC, PROMIS Fatigue Scale, and EORTC Global Health Status/QoL. Ruxolitinib-treated patients who achieved a ≥ 35% reduction in spleen volume experienced the greatest improvements in these PROs. Conclusion Ruxolitinib-treated patients achieved clinically meaningful improvements in myelofibrosis-related symptoms and QoL, but patients receiving placebo reported worsening of symptoms and other PROs.

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