scholarly journals The use of patient-reported measures in epilepsy care: the Calgary Comprehensive Epilepsy Program experience

2021 ◽  
Vol 5 (S2) ◽  
Author(s):  
Guillermo Delgado-García ◽  
Samuel Wiebe ◽  
Colin B. Josephson
Keyword(s):  
Psychosocial Functioning ◽  
Clinical Decision Making ◽  
Clinical Decision ◽  
Central Component ◽  
Future Directions ◽  
Individual Level ◽  
Patient Reported ◽  
Implementation Studies ◽  
Patient Reported Measures

AbstractThe regular use of patient-reported measures (PRMs) has been associated with greater patient satisfaction and outcomes. In this article, we will review the Calgary Comprehensive Epilepsy Program's successful experience with PRMs in both clinical and research settings, as well as our current challenges and future directions. Our experience will illustrate that is feasible and convenient to implement PRMs, and especially electronic PRMs (ePRMs), into epilepsy clinics. These PRMs have direct clinical and research applications. They inform clinical decision making through readily interpretable scales to which clinicians can expeditiously respond. Equally, they are increasingly forming an integral and central component of intervention and outcomes-based research. However, implementation studies are necessary to address knowledge gaps and facilitate adoption and dissemination of this approach. A natural symbiosis of the clinical and research realms is precision medicine. The foundations of precision-based interventions are now being set whereby we can maximize the quality of life and psychosocial functioning on an individual level. As illustrated in this article, this exciting prospect crucially depends on the routine use of ePRMs in the everyday care of people with epilepsy. Increasing ePRMs uptake will clearly be a catalyst propelling precision epilepsy from aspiration to clinical reality.

scholarly journals Metrics Used to Quantify Fecal Incontinence and Constipation

2021 ◽  
Vol 34 (01) ◽  
pp. 005-014
Author(s):  
Cameron W. Hunt ◽  
Paul M. Cavallaro ◽  
Liliana G. Bordeianou
Keyword(s):  
Fecal Incontinence ◽  
Subjective Experience ◽  
Clinical Decision Making ◽  
Pelvic Floor Disorders ◽  
Clinical Decision ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related ◽  
Patient Reported Measures

AbstractWhile fecal incontinence and constipation can be measured through physiological testing, the subjective experience of severity and impact on health-related quality of life lead to both being most effectively captured through patient-reported measures. Patient-reported measures of severity and impact help to determine baseline symptoms, guide clinical decision making, and compare various treatments. Here, we take pause to review the psychometric qualities that make effective instruments, and discuss some of the most commonly used instruments along with the reasons behind their use. In addition, we highlight the benefits of a standardized instrument designed to evaluate the major symptoms of patients presenting with pelvic floor disorders (including fecal incontinence and constipation). Ultimately, we aim to provide guidance in choosing appropriate instruments for clinical and research use.

Health-related quality of life (HRQOL) in non-small cell lung cancer (NSCLC): An update of a systematic review on methodological issues in randomized controlled trials (RCTs)

2009 ◽  
Vol 27 (15_suppl) ◽  
pp. 9604-9604
Author(s):  
L. Claassens ◽  
J. van Meerbeeck ◽  
C. Coens ◽  
C. Quinten ◽  
X. S. Wang ◽  
...  
Keyword(s):  
Systematic Review ◽  
Clinical Decision Making ◽  
Clinical Decision ◽  
Clinical Findings ◽  
Cancer Site ◽  
Quality Of Reporting ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related

9604 Background: NSCLC is a prevalent cancer site and RCTs frequently assess patient HRQOL, given the modest survival gains. This study is an update of a systematic review (JCO, 2003) on the HRQOL methodology in NSCLC RCTs. The objective was gaining insight into the evolution of HRQOL methodology over the last decades to help understand if the quality of reporting—and its benefit for clinical-decision making—has improved. Methods: A systematic literature review was undertaken through Medline. RCTs including newly diagnosed NSCLC patients with age ≥ 18, who underwent chemotherapy and/or radiotherapy; comprising patient-reported HRQOL endpoints; and published in English from 2002 to end 2008 were eligible. Two independent reviewers evaluated demographics, trial design, HRQOL measurements and statistical analysis. Results: Forty-five RCTs including 16,382 patients were selected, versus 29 trials between 1980 and 2002. Overall, the quality of HRQOL methodology reported was adequate, although no improvement over time was noticed. Comparisons to the former review led to similar results (p > .05): Of the 45 RCTs, HRQOL end points were primary objectives in 20%. Significant HRQOL between-treatment differences were found in 60% of the RCTs. Adequacy of result presentation was found for a majority (71%). Few studies paid attention to clinically meaningful differences (36%). The EORTC and FACIT tools and the LCSS were most commonly applied in 56%, 18% and 13% respectively. There was sufficient detailing on domains, time points and patient compliance (> 70%), but little on instrument administration methods (18%). However, HRQOL hypothesis (9%); instrument rationale (11%); verification of the cultural validity (29%); and impact of missing data (31%) were addressed to a significantly less extent than before 2002 (p < .05). Conclusions: The number of RCTs incorporating HRQOL assessments in the NSCLC population has increased considerably. Despite the acceptable quality of the HRQOL methodology reporting, certain aspects remain poorly addressed. Our findings suggest the need for international standardization of HRQOL reporting, similar to the CONSORT guidelines for clinical findings. No significant financial relationships to disclose.

scholarly journals Promoting Equity When Using the SNOT-22 Score: A Scoping Review and Literature Review

Sinusitis ◽  
2022 ◽  
Vol 6 (1) ◽  
pp. 15-20
Author(s):  
Abigail Weaver ◽  
Andrew Wood
Keyword(s):  
Quality Of Life ◽  
Ethnic Differences ◽  
Scoping Review ◽  
Clinical Decision Making ◽  
Local Population ◽  
Clinical Decision ◽  
White People ◽  
Patient Reported ◽  
Snot 22

It is established that non-white people experience worse health outcomes than white people within the same population. Equity addresses differences between patient subgroups, allowing needs-based distribution of resources. The use of quality-of-life (QoL) tools to assist clinical decision making such as the SNOT-22 for chronic rhinosinusitis promotes equality, not equity, as quality-of-life (QoL) tools provide the same criteria of symptom scoring across diverse populations. We considered the effects of ethnicity and race on SNOT-22 scores and whether these scores should be adjusted to improve equity. PubMed and MEDLINE provided papers for a scoping review. A combination of the following search terms was used: patient-reported outcome measures (PROM) (OR) quality of life; (AND) race (OR) ethnicity (OR) disparities; (AND) otolaryngology (OR) SNOT-22 (OR) sinusitis. The first study identified no evidence of ethnic variability in SNOT-22 scores. However, the study did not represent the local population, including 86% white people. Other studies identified baseline SNOT-22 disparities with respect to population demographics, gender, and age. Ethnic differences appear to exist in acute sinusitis symptomatology. In other fields both within and outside of otorhinolaryngology, ethnic differences exist with regard to QoL tools. This scoping review identified a paucity of data in rhinology. However, evidence implies some form of correction to QoL scores could help promote equity for non-white patients.

Between a logic of disruption and a logic of continuation: Negotiating the legitimacy of algorithms used in automated clinical decision-making

2021 ◽  
pp. 136345932199674
Author(s):  
Rikke Torenholt ◽  
Henriette Langstrup
Keyword(s):  
Decision Making ◽  
Clinical Practice ◽  
Patient Reported Outcomes ◽  
Patient Involvement ◽  
Clinical Decision Making ◽  
Diagnostic Procedures ◽  
Clinical Decision ◽  
Patient Reported ◽  
Pro Tools

In both popular and academic discussions of the use of algorithms in clinical practice, narratives often draw on the decisive potentialities of algorithms and come with the belief that algorithms will substantially transform healthcare. We suggest that this approach is associated with a logic of disruption. However, we argue that in clinical practice alongside this logic, another and less recognised logic exists, namely that of continuation: here the use of algorithms constitutes part of an established practice. Applying these logics as our analytical framing, we set out to explore how algorithms for clinical decision-making are enacted by political stakeholders, healthcare professionals, and patients, and in doing so, study how the legitimacy of delegating to an algorithm is negotiated and obtained. Empirically we draw on ethnographic fieldwork carried out in relation to attempts in Denmark to develop and implement Patient Reported Outcomes (PRO) tools – involving algorithmic sorting – in clinical practice. We follow the work within two disease areas: heart rehabilitation and breast cancer follow-up care. We show how at the political level, algorithms constitute tools for disrupting inefficient work and unsystematic patient involvement, whereas closer to the clinical practice, algorithms constitute a continuation of standardised and evidence-based diagnostic procedures and a continuation of the physicians’ expertise and authority. We argue that the co-existence of the two logics have implications as both provide a push towards the use of algorithms and how a logic of continuation may divert attention away from new issues introduced with automated digital decision-support systems.

Impact of a paediatric cardiac rehabilitation programme upon patient quality of life

2021 ◽  
pp. 1-8
Author(s):  
Kristin H. Kroll ◽  
Joshua R. Kovach ◽  
Salil Ginde ◽  
Roni M. Jacobsen ◽  
Michael Danduran ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cardiac Rehabilitation ◽  
Exercise Capacity ◽  
Psychosocial Functioning ◽  
Rehabilitation Programme ◽  
Self Concept ◽  
Cardiac Rehabilitation Programme ◽  
Patient Reported ◽  
Related Quality

Abstract Introduction: Cardiac rehabilitation programmes for paediatric patients with congenital heart disease (CHD) have been shown to promote emotional and physical health without any associated adverse events. While prior studies have demonstrated the effectiveness of these types of interventions, there has been limited research into how the inclusion of psychological interventions as part of the programme impacts parent-reported and patient-reported quality of life. Materials and methods: Patients between the ages of 7 and 24 years with CHD completed a cardiac rehabilitation programme that followed a flexible structure of four in person-visits with various multidisciplinary team members, including paediatric psychologists. Changes in scores from the earliest to the latest session were assessed regarding exercise capacity, patient functioning (social, emotional, school, psychosocial), patient general and cardiac-related quality of life, patient self-concept, and patient behavioural/emotional problems. Results: From their baseline to final session, patients exhibited significant improvement in exercise capacity (p = 0.00009). Parents reported improvement in the patient’s emotional functioning, social functioning, school functioning, psychosocial functioning, cognitive functioning, communication, and overall quality of life. While patients did not report improvement in these above areas, they did report perceived improvement in certain aspects of cardiac-related quality of life and self-concept. Discussion: This paediatric cardiac rehabilitation programme, which included regular consultations with paediatric psychologists, was associated with divergent perceptions by parents and patients on improvement related to quality of life and other aspects of functioning despite improvement in exercise capacity. Further investigation is recommended to identify underlying factors associated with the differing perceptions of parents and patients.

scholarly journals Warning systems in a computerized nursing process for Intensive Care Units

2014 ◽  
Vol 48 (1) ◽  
pp. 125-132 ◽  
Author(s):  
Daniela Couto Carvalho Barra ◽  
Grace Teresinha Marcon Dal Sasso ◽  
Camila Rosália Antunes Baccin
Keyword(s):  
Patient Safety ◽  
Intensive Care ◽  
Clinical Decision Making ◽  
Clinical Decision ◽  
Healthcare Research ◽  
Pelvic Surgery ◽  
Warning Systems ◽  
Nursing Process ◽  
Promote Patient Safety

A hybrid study combining technological production and methodological research aiming to establish associations between the data and information that are part of a Computerized Nursing Process according to the ICNP® Version 1.0, indicators of patient safety and quality of care. Based on the guidelines of the Agency for Healthcare Research and Quality and the American Association of Critical Care Nurses for the expansion of warning systems, five warning systems were developed: potential for iatrogenic pneumothorax, potential for care-related infections, potential for suture dehiscence in patients after abdominal or pelvic surgery, potential for loss of vascular access, and potential for endotracheal extubation. The warning systems are a continuous computerized resource of essential situations that promote patient safety and enable the construction of a way to stimulate clinical reasoning and support clinical decision making of nurses in intensive care.

scholarly journals Opioid Analgesia: Perspectives on Right Use and Utility

2007 ◽  
Vol 3;10 (5;3) ◽  
pp. 479-491 ◽  
Author(s):  
Jane C. Ballantyne
Keyword(s):  
Quality Of Life ◽  
Chronic Pain ◽  
Side Effects ◽  
Clinical Decision Making ◽  
Analgesic Efficacy ◽  
Clinical Decision ◽  
Opioid Analgesia ◽  
Opioid Treatment

The ability of opioids to effectively and safely control acute and cancer pain has been one of several arguments used to support extending opioid treatment to patients with chronic pain, against a backdrop of considerable caution that has been based upon fears of addiction. Of course, opioids may cause addiction, but the “principle of balance” may justify that “…efforts to address abuse should not interfere with legitimate medical practice and patient care.” Yet, situations are increasingly encountered in which opioid-maintained patients are refractory to analgesia during periods of pain, or even during the course of chronic treatment. The real question is whether analgesic efficacy of opioids can be maintained over time. Overall, the evidence supporting long-term analgesic efficacy is weak. The putative mechanisms for failed opioid analgesia may be related to tolerance or opioid-induced hyperalgesia. Advances in basic sciences may help in understanding these phenomena, but the question of whether long-term opioid treatment can improve patients’ function or quality of life remains a broader issue. Opioid side effects are well known, but with chronic use, most (except constipation) subside. Still, side effects can negatively affect the outcomes and continuity of therapy. This paper addresses 1) what evidence supports the long-term utility of opioids for chronic pain; 2) how side effects may alter quality of life; 3) the nature of addiction and why it is different in pain patients, and 4) on what grounds could pain medication be denied? These questions are discussed in light of patients’ rights, and warrant balancing particular responsibilities with risks. These are framed within the Hippocratic tradition of “producing good for the patient and protecting from harm,” so as to enable 1) more informed clinical decision making, and 2) progress towards right use and utility of opioid treatment for chronic pain. Key Words: Opioids, chronic pain, addiction, side effects, utility, ethics

Beyond the Development of Health-Related Quality-of-Life (HRQOL) Measures: A Checklist for Evaluating HRQOL Outcomes in Cancer Clinical Trials—Does HRQOL Evaluation in Prostate Cancer Research Inform Clinical Decision Making?

2003 ◽  
Vol 21 (18) ◽  
pp. 3502-3511 ◽  
Author(s):  
Fabio Efficace ◽  
Andrew Bottomley ◽  
David Osoba ◽  
Carolyn Gotay ◽  
Henning Flechtner ◽  
...  
Keyword(s):  
Prostate Cancer ◽  
Decision Making ◽  
Clinical Trials ◽  
Clinical Decision Making ◽  
Clinical Decision ◽  
Cancer Clinical Trials ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

Purpose: The aim of this study was to evaluate whether the inclusion of health-related quality of life (HRQOL), as a part of the trial design in a randomized controlled trial (RCT) setting, has supported clinical decision making for the planning of future medical treatments in prostate cancer. Materials and Methods: A minimum standard checklist for evaluating HRQOL outcomes in cancer clinical trials was devised to assess the quality of the HRQOL reporting and to classify the studies on the grounds of their robustness. It comprises 11 key HRQOL issues grouped into four broader sections: conceptual, measurement, methodology, and interpretation. Relevant studies were identified in a number of databases, including MEDLINE and the Cochrane Controlled Trials Register. Both their HRQOL and traditional clinical reported outcomes were systematically analyzed to evaluate their consistency and their relevance for supporting clinical decision making. Results: Although 54% of the identified studies did not show any differences in traditional clinical end points between treatment arms and 17% showed a difference in overall survival, 74% of the studies showed some difference in terms of HRQOL outcomes. One third of the RCTs provided a comprehensive picture of the whole treatment including HRQOL outcomes to support their conclusions. Conclusion: A minimum set of criteria for assessing the reported outcomes in cancer clinical trials is necessary to make informed decisions in clinical practice. Using a checklist developed for this study, it was found that HRQOL is a valuable source of information in RCTs of treatment in metastatic prostate cancer.

scholarly journals Quality of life of elderly patients with solid tumours undergoing adjuvant cancer therapy: a systematic review

BMJ Open ◽  
2018 ◽  
Vol 8 (1) ◽  
pp. e018101 ◽  
Author(s):  
Karis Kin-Fong Cheng ◽  
Ethel Yee-Ting Lim ◽  
Ravindran Kanesvaran
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Adjuvant Chemotherapy ◽  
Adjuvant Therapy ◽  
Elderly Patients ◽  
Clinical Decision Making ◽  
Clinical Decision ◽  
Risk Of Bias ◽  
Solid Tumours

ObjectivesThe measurement of quality of life (QoL) in elderly cancer population is increasingly being recognised as an important element of clinical decision-making and the evaluation of treatment outcome. This systematic review aimed to summarise the evidence of QoL during and after adjuvant therapy in elderly patients with cancer.MethodsA systematic search was conducted of studies published in CINAHL plus, CENTRAL, PubMed, PsycINFO and Web of Science from the inception of these databases to December 2016. Eligible studies included RCTs and non-RCTs in which QoL was measured in elderly patients (aged 65 years or above) with stage I–III solid tumours who were undergoing adjuvant chemotherapy and/or radiotherapy. Because of the heterogeneity and the insufficient data among the included studies, the results were synthesised narratively.ResultsWe included 4 RCTs and 14 non-RCTs on 1785 participants. In all four RCTs, the risk of bias was low or unclear for most items but high for detection. Of the 14 non-RCTs, 5 studies were judged to have a low or moderate risk of bias for all domains, and the other 9 studies had a serious risk of bias in at least one domain. The bias was observed mainly in the confounding and in the selection of participants for the study. For most elderly patients with breast cancer, the non-significant negative change in the QoL was transient. A significant increase in the QoL during the course of temozolomide in elderly patients with glioblastoma but a decreasing trend in QoL after radiotherapy was shown. This review also shows a uniform trend of stable or improved QoL during adjuvant therapy and at follow-up evaluations across the studies with prostate, colon or cervical cancer population.ConclusionsThis review suggests that adjuvant chemotherapy and radiotherapy may not have detrimental effects on QoL in most elderly patients with solid tumours.

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