scholarly journals Remote Mentoring Optimizes Virtual Collection of Patient-Reported Data: A Prospective Cohort Study with Adaptive Design Conducted in COVID-19 Era.

2021 ◽  
Author(s):  
Karineh Kazazian ◽  
Jessica Bogach ◽  
Wendy Johnston ◽  
Deanna Ng ◽  
Carol J. Swallow
Keyword(s):  
Cohort Study ◽  
Adaptive Design ◽  
Negative Impact ◽  
Surgical Oncology ◽  
Active Management ◽  
Hard Copy ◽  
Study Cohort ◽  
Cross Sectional ◽  
Patient Reported ◽  
Edmonton Symptom Assessment Scale

Abstract Prior to the COVID-19 pandemic, patients attending ambulatory clinics at cancer centers in Ontario completed the Edmonton Symptom Assessment Scale (ESAS) at each visit. At our center, completion was via touch pad, with assistance by clinic volunteers. As of March 2020, clinic appointments were conducted virtually when possible and touch pads removed. We anticipated a negative impact on the collection of patient-reported outcomes (PROs), and the recognition of severe symptoms. Methods: We performed a prospective cross-sectional cohort study to test the feasibility of remote ESAS completion by patients with appointments at a weekly surgical oncology clinic. Patients in the initial study cohort were asked to complete and return the ESAS virtually(V). Given low completion rates, the ensuing cohort was asked to complete a hard-copy(HC) ESAS. For the final cohort, we used an adaptive approach, providing remote, personal mentorship by a member of the care team to support virtual electronic ESAS completion (virtual-mentored(VM) cohort). Results: Between May-July 2020, a total of 174 patient encounters were included in the study. For the V cohort, 20/46 patients (44%) successfully completed and returned the electronic ESAS, compared to 49/50 (98%) for the HC cohort. For the VM cohort (n=78), the completion rate was 74%. Questionnaire completion was not predicted by age, sex or tumor site, although patients who completed the ESAS were more likely to be in active management rather than surveillance(p=0.04). Of all completed forms, 42% revealed a depression score ³2, and 27% an anxiety score ³4. Conclusions: We identified significant barriers to the virtual completion of ESAS forms, with a lack of predictive variables. The severe degree of psychological distress reported by ~50% of respondents demonstrates the need for ongoing regular collection/review of these data. Innovative solutions are required to overcome barriers to virtual collection of PROs.

Implementation of virtual mentoring to optimize collection of patient-reported data in the COVID-19 era: A prospective cohort study with adaptive design.

2021 ◽  
Vol 39 (15_suppl) ◽  
pp. e24091-e24091
Author(s):  
Karineh Kazazian ◽  
Jessica Bogach ◽  
Wendy Johnston ◽  
Carol Jane Swallow
Keyword(s):  
Cohort Study ◽  
Adaptive Design ◽  
Completion Rate ◽  
Hard Copy ◽  
Cancer Center ◽  
Study Cohort ◽  
Tumor Site ◽  
Cross Sectional ◽  
Patient Reported ◽  
Edmonton Symptom Assessment Scale

e24091 Background: Prior to the COVID-19 pandemic, all patients attending ambulatory clinic at cancer centers in Ontario, Canada completed the Edmonton Symptom Assessment Scale (ESAS), as per governmental cancer agency mandate. At our center, completion was via touch pad, with assistance by clinic volunteers. As of mid-March 2020, clinic appointments were conducted virtually whenever possible, and touch pads removed from clinic. Our purpose here was to explore how these changes impacted the collection of patient-reported outcomes, in particular the recognition of severe symptoms. Methods: We performed a prospective cross-sectional cohort study to test the feasibility of remote completion of the ESAS by patients scheduled for appointments at a weekly surgical oncology clinic at a major cancer center. Patients were identified serially based on date of clinic appointment. Patients in the initial study cohort were asked to complete and return the ESAS virtually (V). Given low completion rates, the ensuing study cohort was asked to complete a hard-copy (HC) ESAS. For the final cohort, we used an adaptive approach, providing remote, personal mentoring by a member of the health care team to support virtual ESAS completion (virtual-mentored, VM). Results: Between May-July 2020, a total of 174 patients were included in the study: 53% were female, and median age was 62 (19-90) yrs. Age, gender and tumor site did not differ between the three cohorts. For the V cohort, 20/43 patients successfully completed and returned the ESAS electronically (completion rate 44%). For the HC cohort, 49/50 completed the form (98%). For the VM cohort (n=78), the completion rate was 74%. Questionnaire completion was not predicted by age, gender or tumor site, although patients who completed the ESAS were more likely to be under active investigation/treatment vs. surveillance (p=.04). Of the 127 ESAS forms completed in all patient cohorts, 117 reported at least 1 symptom score ≥1. There were no significant differences in individual symptom scores (e.g. tiredness, wellbeing-see Table) reported between cohorts. Of all completed forms, 42% had a depression score ≥2 and 27% an anxiety score ≥4, indicating significant psychosocial distress. Conclusions: We have identified significant barriers to the virtual completion of ESAS forms, with lack of predictive variables. The severe degree of psychological distress reported by ̃50% of respondents demonstrates the need for ongoing regular collection and review of these data.[Table: see text]

scholarly journals Use of patient-reported outcome measures (PROMs) by orthopedic surgeons in Saudi Arabia

2020 ◽  
Vol 15 (1) ◽  
Author(s):  
Fayez Alshehri ◽  
Abdulaziz Alarabi ◽  
Mohammed Alharthi ◽  
Thamer Alanazi ◽  
Ahmed Alohali ◽  
...  
Keyword(s):  
Saudi Arabia ◽  
Outcome Measures ◽  
Clinical Work ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Hard Copy ◽  
Clinical Activity ◽  
Cross Sectional ◽  
Orthopedic Surgeons ◽  
Patient Reported

Abstract Background There is increasing literature on the usefulness of patient-reported outcome measures (PROMs), but far fewer studies to determine their use by orthopedic surgeons and the barriers they face in applying PROMs in their daily clinical activity. Methods Cross-sectional study using a questionnaire that was distributed in both soft and hard copy formats to a sample of 262 orthopedic surgeons. Participants included orthopedic surgeons who are employed by the Ministry of Health (MOH) in Riyadh and the Eastern Province, Saudi Arabia. The questionnaire was distributed through on-site visitations to orthopedic departments in MOH hospitals as well as through online correspondence by email, WhatsApp, and social media. Results The study sample included 262 orthopedic surgeons (13.7% females and 86.3% males). Surgeons aged < 34, 35–44, and 45–54 years old represented 28.66%, 38.9%, and 20.2% of the study sample, respectively. The majority of the included surgeons did not use PROMs (69.1%), and some (17.2%) used it for research purposes. Only 5% used it regularly in daily clinical work. Conclusion The clinical use of PROMs among orthopedic surgeons was negligible, even though an overwhelming majority were interested in using PROMs. The reasons provided included a lack of knowledge on how to use PROMs and the perception that it is too time-consuming to add to regular clinical routine. There should be more efforts towards training surgeons on how to use PROMs, whereas increasing compatibility with existing software tools used by MOH hospitals may help offset time-related reservations.

Plasma levels of β2-microglobulin are associated with atherosclerosis in patients with systemic lupus erythematosus: a cross-sectional cohort study

Lupus ◽  
2018 ◽  
Vol 27 (9) ◽  
pp. 1517-1523 ◽  
Author(s):  
H C B Leffers ◽  
M L Hermansen ◽  
B Sandholt ◽  
A Fuchs ◽  
H Sillesen ◽  
...  
Keyword(s):  
Systemic Lupus Erythematosus ◽  
Cohort Study ◽  
Lupus Erythematosus ◽  
Plasma Levels ◽  
High Plasma ◽  
Prior History ◽  
Study Cohort ◽  
Systemic Lupus ◽  
Cross Sectional ◽  
Β2 Microglobulin

Objective The objective of this paper is to examine the association between plasma levels of β2-microglobulin (β2MG), a protein previously associated with atherosclerosis, and the presence of carotid plaque (CP) or coronary artery calcium (CAC) in a cross-sectional cohort study of patients with systemic lupus erythematosus (SLE). Methods Patients with SLE were enrolled between June 2013 and May 2014. The presence of CP and CAC was assessed with ultrasonography and computed tomography scan, respectively. The presence of CP or CAC in the SLE patients was analyzed with respect to plasma levels of β2MG and renal function expressed as the estimated glomerular filtration rate (eGFR). Results The study cohort consisted of 147 patients, 89% women and 95% Caucasians. The median age was 46 (range: 21–75) years with a median disease duration of 14 years. CP and CAC was observed in 29 (20%) and 57 (39%) of patients, respectively. CP or CAC was seen in 62 (42%) patients and was associated with the highest quartile of plasma β2MG in patients with eGFR ≥ 90 ml/min/1.73 m2; OR = 18 (95% CI: 1.7–181). β2MG adjusted for eGFR was also associated with presence of CP or CAC in the total cohort. The exclusion of 25 patients with a prior history of cardiovascular disease did not change the observed associations. Conclusion In this study, we found significant associations between imaging markers of atherosclerosis and high plasma levels of plasma β2MG. These data suggest that β2MG is a candidate for further study as a biomarker for atherosclerosis in SLE.

scholarly journals The impact of lockdown during the COVID-19 pandemic on mental and social health of children and adolescents

2021 ◽  
Author(s):  
Michiel A. J. Luijten ◽  
Maud M. van Muilekom ◽  
Lorynn Teela ◽  
Tinca J. C. Polderman ◽  
Caroline B. Terwee ◽  
...  
Keyword(s):  
Global Health ◽  
Peer Relationships ◽  
Negative Impact ◽  
Daily Life ◽  
Mental Healthcare ◽  
Social Health ◽  
Measurement Information ◽  
Cross Sectional ◽  
Patient Reported ◽  
The Impact

Abstract Purpose During the COVID-19 pandemic in the Netherlands, governmental regulations resulted in a lockdown for adults as well as children/adolescents. Schools were closed and contact with other people was limited. In this cross-sectional, population-based study, we aimed to investigate the mental/social health of children/adolescents during COVID-19 lockdown. Methods Two representative samples of Dutch children/adolescents (8–18 years) before COVID-19 (2018, N = 2401) and during lockdown (April 2020, N = 844) were compared on the Patient-Reported Outcomes Measurement Information System (PROMIS) domains: global health, peer relationships, anxiety, depressive symptoms, anger, sleep-related impairment by linear mixed models and calculating relative risks (RR (95% CI)) for the proportion of severe scores. Variables associated with worse mental/social health during COVID-19 were explored through multivariable regression models. The impact of COVID-19 regulations on the daily life of children was qualitatively analyzed. Results Participants reported worse PROMIS T-scores on all domains during COVID-19 lockdown compared to before (absolute mean difference range 2.1–7.1 (95% CI 1.3–7.9). During lockdown, more children reported severe Anxiety (RR = 1.95 (1.55–2.46) and Sleep-Related Impairment (RR = 1.89 (1.29–2.78) and fewer children reported poor Global Health (RR = 0.36 (0.20–0.65)). Associated factors with worse mental/social health were single-parent family, ≥ three children in the family, negative change in work situation of parents due to COVID-19 regulations, and a relative/friend infected with COVID-19. A large majority (> 90%) reported a negative impact of the COVID-19 regulations on daily life. Conclusion This study showed that governmental regulations regarding lockdown pose a serious mental/social health threat on children/adolescents that should be brought to the forefront of political decision-making and mental healthcare policy, intervention, and prevention.

scholarly journals Use of Patient Reported Outcome Measures (PROMs) by Orthopedic Surgeons in Saudi Arabia

2020 ◽  
Author(s):  
Fayez Alshehri ◽  
Abdulaziz Alarabi ◽  
Mohammed Alharthi ◽  
Thamer Alanazi ◽  
Ahmed Alohali ◽  
...  
Keyword(s):  
Saudi Arabia ◽  
Outcome Measures ◽  
Clinical Work ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Hard Copy ◽  
Clinical Activity ◽  
Cross Sectional ◽  
Orthopedic Surgeons ◽  
Patient Reported

Abstract Background There is increasing literature on the usefulness of patient-reported outcome measures (PROMs), but far fewer studies to determine their use by orthopedic surgeons and the barriers they face in applying PROMs in their daily clinical activity.Methods Cross-sectional study using a questionnaire that was distributed in both soft and hard copy formats to a sample of 262 orthopedic surgeons. Participants included orthopedic surgeons who are employed by the Ministry of Health (MOH) in Riyadh and the Eastern Province, Saudi Arabia. The questionnaire was distributed through onsite visitations to orthopedic departments in MOH hospitals as well as through online correspondence by email, WhatsApp, and social media.Results The study sample included 262 orthopedic surgeons (13.7% females and 86.3% males). Surgeons aged < 34, 35 – 44, and 45 - 54 years old represented 28.66%, 38.9%, and 20.2% of the study sample, respectively. The majority of the included surgeons did not use PROMs (69.1%) and some (17.2%) used it for research purposes. Only 5% used it regularly in daily clinical work.Conclusion The clinical use of PROMs among orthopedic surgeons was negligible, even though an overwhelming majority were interested in using PROMs. The reasons provided included a lack of knowledge on how to use PROMs and the perception that it is too time-consuming to add to regular clinical routine. There should be more effort towards training surgeons on how to use PROMs, whereas increasing compatibility with existing software tools used by MOH hospitals may help offset time-related reservations.

scholarly journals Association Between Music Therapy Techniques and Patient-Reported Moderate to Severe Fatigue in Hospitalized Adults With Cancer

2020 ◽  
Vol 16 (12) ◽  
pp. e1553-e1557 ◽  
Author(s):  
Thomas M. Atkinson ◽  
Kevin T. Liou ◽  
Michael A. Borten ◽  
Qing S. Li ◽  
Karen Popkin ◽  
...  
Keyword(s):  
Music Therapy ◽  
Positive Affect ◽  
Care Utilization ◽  
Inpatient Setting ◽  
Free Text ◽  
Cross Sectional ◽  
Cancer Disease ◽  
Cancer Related Fatigue ◽  
Patient Reported ◽  
Edmonton Symptom Assessment Scale

PURPOSE: Cancer-related fatigue is a prevalent, debilitating symptom that contributes to increased health care utilization among hospitalized patients. Music therapy is a nonpharmacological intervention that uses active (eg, singing, selecting songs) and passive (eg, listening) techniques. Preliminary evidence from small trials suggests a potential benefit for cancer-related fatigue in the inpatient setting; however, it remains unclear which techniques are most effective. METHODS: A cross-sectional mixed-methods study was performed to compare cancer-related fatigue before and after active or passive music therapy. Cancer-related fatigue was captured via the Edmonton Symptom Assessment Scale fatigue item. Patients were asked to provide postsession free-text comments. RESULTS: A total of 436 patients (mean [standard deviation] age, 62.2 [13.4] years; n = 284 [65.1%] women; n = 294 [67.4%] white; active music therapy n = 360 [82.6%]; passive music therapy n = 76 [17.4%]) with a range of primary malignancies participated. Active music therapy was associated with a 0.88-point greater reduction in cancer-related fatigue (95% CI, 0.26 to 1.51; P = .006; Cohen’s D, 0.52) at postsession as compared with passive music therapy when restricting the analysis to patients who rated their baseline cancer-related fatigue as moderate to severe (ie, ≥ 4; n = 236 [54.1%]). Free-text responses confirmed higher frequencies of words describing positive affect/emotion among active music therapy participants. CONCLUSIONS: In a large sample of inpatient adults with diverse cancer disease types, active music therapy was associated with greater reduction in cancer-related fatigue and increased reporting of positive affect/emotions compared with passive music therapy. Additional research is warranted to determine the specific efficacy and underlying mechanisms of music therapy on cancer-related fatigue.

Impact of Completing CLEFT-Q Scales That Ask About Appearance on Children and Young Adults: An International Study

2020 ◽  
Vol 57 (7) ◽  
pp. 840-848
Author(s):  
Anne F. Klassen ◽  
Louise Dalton ◽  
Timothy E. E. Goodacre ◽  
Karen E. Harman ◽  
Rona Slator ◽  
...  
Keyword(s):  
Cleft Lip ◽  
Outcome Measure ◽  
Negative Impact ◽  
International Study ◽  
Female Gender ◽  
Patient Reported Outcome ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Patient Reported ◽  
The Impact

Objective: To describe the impact of completing the CLEFT-Q appearance scales on patients with cleft lip and/or palate and to identify demographic and clinical characteristics and CLEFT-Q scores associated with reporting a negative impact. Design: International cross-sectional survey. Setting: Recruitment took place between October 2014 and November 2016 at 30 craniofacial clinics located in 12 countries. Patients: Aged 8 to 29 years with cleft lip and/or palate. Main Outcome Measure(s): Participants were asked 4 questions to evaluate the impact of completing the field test version of a patient-reported outcome measure (the CLEFT-Q) that included 154 items, of which 79 (51%) asked about appearance (of the face, nose, nostrils, teeth, lips, jaws, and cleft lip scar). Results: The sample included 2056 participants. Most participants liked answering the CLEFT-Q (88%) and the appearance questions (82%). After completing the appearance scales, most participants (77%) did not feel upset or unhappy about how they look, and they felt the same (67%) or better (23%) about their appearance after completing the questionnaire. Demographic and clinical variables associated with feeling unhappy/upset or worse about how they look included country of residence, female gender, more severe cleft, anticipating future cleft-specific surgeries, and reporting lower (ie, worse) scores on CLEFT-Q appearance and health-related quality-of-life scales. Conclusion: Most participants liked completing the CLEFT-Q, but a small minority reported a negative impact. When used in clinical practice, CLEFT-Q scale scores should be examined as soon as possible after completion in order that the clinical team might identify patients who might require additional support.

scholarly journals Suicidal risk and resilience in juvenile fibromyalgia syndrome: a cross-sectional cohort study

2021 ◽  
Vol 19 (1) ◽  
Author(s):  
Sabrina Gmuca ◽  
Maitry Sonagra ◽  
Rui Xiao ◽  
Kimberly S. Miller ◽  
Nina H. Thomas ◽  
...  
Keyword(s):  
Cohort Study ◽  
Suicidal Ideation ◽  
Fibromyalgia Syndrome ◽  
Care Center ◽  
Tertiary Care ◽  
Pain Clinic ◽  
Significant Positive Association ◽  
Cross Sectional ◽  
Juvenile Fibromyalgia ◽  
Patient Reported

Abstract Background To characterize suicidality among youth with juvenile fibromyalgia syndrome (JFMS) receiving treatment from pediatric rheumatologists at a tertiary care center in order to determine the prevalence of suicidality in JFMS and to explore risk factors for persistent suicidal ideation. Methods We performed a cross-sectional cohort study of children 12–17 years old with JFMS seen in a specialty pediatric rheumatology pain clinic from 7/2017–9/2019. All subjects completed patient-reported outcomes measures, complemented by retrospective chart review. Subjects who endorsed item 8 on the Children’s Depression Inventory, 2nd Edition (CDI-2) were categorized as endorsing suicidal ideation. We assessed for differences between the suicidal and non-suicidal patients using Wilcoxon-rank sum test. Logistic regression modeling was performed to identify psychosocial factors associated with suicidality. Results Of the 31 subjects, more than one-quarter endorsed suicidality. Nearly 90% of teens with suicidal ideation were established in outpatient counseling. In bivariate analyses, suicidality was associated with lower resilience and greater depression and anxiety (all p < 0.05). Pain intensity trended towards a statistically significant positive association (OR: 1.16 [0.99–1.37]; p = 0.06). Lower resilience was independently associated with suicidality (OR: 0.90 [95% CI: 0.82–0.98]; p < 0.02). Conclusions Suicidality was prevalent among youth with JFMS and persistent despite concurrent receipt of mental health services. Higher patient-level resilience was independently associated with a reduced odds of suicidality. Future work should examine the role of resilience training on reducing psychological distress and mitigating the risk of suicidality in JFMS.

scholarly journals 124 Post-operative mortality and risk of COVID-19 in patients receiving urgent elective surgical care at a COVID clean facility during the COVID 19 pandemic: a cross-sectional study

2021 ◽  
Vol 108 (Supplement_2) ◽  
Author(s):  
Lok Ka Cheung ◽  
Shafaque Shaikh ◽  
Shanju Rai ◽  
David Lawrie ◽  
Abdul Qadir
Keyword(s):  
Patient Satisfaction ◽  
Operative Mortality ◽  
Negative Impact ◽  
Surgical Care ◽  
Cross Sectional Study ◽  
Satisfaction Survey ◽  
Cross Sectional ◽  
Safe Delivery ◽  
Patient Satisfaction Survey ◽  
Patient Reported

Abstract Introduction The Sars-Cov2 related COVID-19 pandemic has triggered the adoption of unprecedented approaches to contain it across the globe at a very short notice. The aim of this study is to determine post-operative mortality and the risk of developing COVID-19 in a COVID-19 negative population undergoing elective surgical care in a COVID-clean facility. We also explored patient experiences and satisfaction as well patient reported post-operative COVID related symptoms through a patient satisfaction survey. Method A patient satisfaction survey was built into the service which was performed by means of a telephone follow-up at 30 days from procedure. One of the aspects of the service review was to capture data on patients developing COVID-19 symptoms post-operatively but not requiring hospital admission or testing. Results & Conclusion: Our study has shown promising results with the early outcomes of elective surgical care delivered through a COVID-clean facility with no mortality, low morbidity and high patient satisfaction across all 5 specialties (Plastic surgery, Urology, Gynaecology, General Surgery) in 455 patients operated on over 10 weeks. We have demonstrated safe delivery of elective surgical services by utilising a COVID-clean facility minimising the negative impact of delays experienced due to the COVID-19 pandemic.

Utilizaton of patient reported outcomes measures (PROM) to characterize symptom burden and adherence associated with oral oncolytic therapy.

2019 ◽  
Vol 37 (27_suppl) ◽  
pp. 210-210
Author(s):  
Emily R. Mackler ◽  
Taylor Weis ◽  
Kelly Marie Procailo ◽  
Vincent D. Marshall ◽  
Karen B. Farris
Keyword(s):  
Medication Adherence ◽  
Cancer Treatment ◽  
Symptom Burden ◽  
Symptom Assessment ◽  
Self Management ◽  
Improve Medication Adherence ◽  
Cross Sectional ◽  
Oncolytic Therapy ◽  
Patient Reported ◽  
Edmonton Symptom Assessment Scale

210 Background: The use of patient reported outcome measures (PROMs) to monitor cancer treatment tolerability has been shown to positively impact outcomes. The purpose of this study was to characterize the incidence and severity of side effects, patient self-management confidence, and medication adherence in patients receiving oral oncolytic therapy. Methods: This multicenter, cross-sectional, observational study was conducted across 6 Michigan oncology practices from July 2016-December 2018. Patients were eligible to complete PROMs during the course of their treatment if they were receiving an oral oncolytic medication (excluding endocrine therapy). Results: There were a total of 2252 PROMs completed in 695 patients. Patients were 48% female, a median age of 69 years, and most commonly receiving treatment with capecitabine (18%), palbociclib (10%), and lenalidomide (9%). 54% of PROMs had at least one Edmonton Symptom Assessment Scale (ESAS) symptom rated as moderate or severe. Patients indicated the presence of a most bothersome symptom (MBS) in 35% of PROMs. Most common MBSs were fatigue (26%), pain (16%), constitutional symptoms other than fatigue (15%), and nausea/vomiting (14%). Non-adherence was reported in 20% of PROMs. ESAS symptoms rated as moderate or severe, the presence of a MBS, and lower confidence scores all correlated with medication non-adherence. Conclusions: Patients taking oral oncolytics for their cancer treatment experience a high symptom burden with more than 50% experiencing a moderate to severe symptom. Optimizing symptom management and providing patient education that increases patient confidence in self-management may improve medication adherence and patient outcomes.

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