Prevalence of symptom clusters among sarcoma patients in active treatment.

2019 ◽  
Vol 37 (15_suppl) ◽  
pp. e22561-e22561
Author(s):  
Vanessa C. Copeland ◽  
Jennifer Phun ◽  
Eve M. Segal ◽  
Kathryn J. Hammer ◽  
Elizabeth T. Loggers
Keyword(s):  
Active Treatment ◽  
Patient Reported Outcomes ◽  
Chart Review ◽  
Additional Data ◽  
Clinical Care ◽  
Retrospective Chart Review ◽  
Symptom Clusters ◽  
Future Research ◽  
Specific Data ◽  
Patient Reported

e22561 Background: Cancer patients (pt) frequently experience symptoms from cancer or its treatment. Two or three co-occurring, uncontrolled symptoms (symptom clusters, SC), can worsen cancer pt morbidity and mortality. Although SC have been characterized in other cancer pts, little research has been conducted in sarcoma pts. Methods: SC were studied via retrospective chart review of adult sarcoma pts receiving treatment between 09/2018-01/2019 in a dedicated sarcoma clinic. Pts completed a 33-item, modified Patient Reported Outcomes-Common Terminology Criteria for Adverse Events (mPRO-CTCAE)-based review of systems (hereafter “form”) for ongoing clinical care with presence of individual symptoms defined as ≥“occasionally.” Demographic, disease and treatment specific data was collected; descriptive data (%’s) are presented. Results: Pts (n = 153 completing 321 forms) were median 57 years (range 20-81), 48% male, 68% white, with lower extremity (29%) or abdomen (46%) sarcoma with 67% receiving IV chemo (33% oral chemo), with the majority at full dose (77%). Most had leiomyosarcoma 18%, liposarcoma 14%, GIST 12%, or NOS 24% with 59% metastatic disease. Five SC triads occurring in > 25% of pts who fully completed one form were identified (see Table). Eighty-one pts completed 2 or more forms (mean 26.7 days from first to second form [std dev 17.7, range 2-77]) with 50-67% of evaluable pts having ongoing SC triads. Conclusions: Symptom clusters are common among sarcoma patients on active treatment. Future research should address optimal management of these clusters. Additional data, including severity/interference of symptoms, longitudinal changes and predictors of SC, will be presented.[Table: see text]

scholarly journals An Editorial on Tailoring Patient-Reported Outcomes to the Individual Patient: Precision PROs

2020 ◽  
Author(s):  
Salene Jones ◽  
Scott D. Ramsey ◽  
Joseph M. Unger
Keyword(s):  
Patient Reported Outcomes ◽  
Clinical Care ◽  
Item Bank ◽  
Future Research ◽  
Minimally Important Difference ◽  
Psychometric Methods ◽  
Patient Reported ◽  
The Individual

Patient-reported outcomes (PROs) have the potential to improve clinical care. One barrier to implementing PROs and maximizing their effectiveness is difficulty individualizing PROs. To address this barrier, we propose a precision PRO methodology. By this approach, patients would first define a minimally important difference for themselves. Patients would then choose which items within a PRO item bank are most important to them; these items would be used to monitor patients’ progress. Patients could be compared to each other – even if they chose different questions – using modern psychometric methods. We propose future research to guide how to determine the simplest and most effective precision PRO methodology.

Carbon dioxide laser treatment for Hailey-Hailey disease: a retrospective chart review with patient-reported outcomes

2015 ◽  
Vol 54 (11) ◽  
pp. 1309-1314 ◽  
Author(s):  
Phillip C. Hochwalt ◽  
Kevin N. Christensen ◽  
Sean R. Cantwell ◽  
Thomas L. Hocker ◽  
Clark C. Otley ◽  
...  
Keyword(s):  
Carbon Dioxide ◽  
Laser Treatment ◽  
Patient Reported Outcomes ◽  
Carbon Dioxide Laser ◽  
Chart Review ◽  
Retrospective Chart Review ◽  
Patient Reported

Subtalar Fusion for Correction of Forefoot Abduction in Stage II Adult-Acquired Flatfoot Deformity

2020 ◽  
pp. 193864002095105
Author(s):  
James P. Davies ◽  
Xiaoyue Ma ◽  
Jonathan Garfinkel ◽  
Matthew Roberts ◽  
Mark Drakos ◽  
...  
Keyword(s):  
Patient Reported Outcomes ◽  
Chart Review ◽  
Statistical Significance ◽  
Retrospective Chart Review ◽  
Stage Ii ◽  
Primary Study ◽  
Study Objective ◽  
Subtalar Fusion ◽  
Patient Reported

Background Correction of talonavicular uncoverage (TNU) in adult-acquired flatfoot deformities (AAFD) can be a challenge. Lateral column lengthening (LCL) traditionally is utilized to address this. The primary study objective is examining stage II AAFD patients and determining if correction can be achieved with subtalar fusion (STF) comparable to LCL. Methods Following institutional review board approval, retrospective chart review performed identifying patients meeting criteria for stage IIB AAFD who underwent either STF with concomitant flatfoot procedures (but not LCL) to correct TNU, or who underwent LCL as part of their flatfoot reconstruction. Patients indicated for STF had one or more of the following: higher body mass index (BMI), were older, had greater deformity, lateral impingement pain, intraoperative spring ligament hyperlaxity. Patients without 1-year follow-up or compete records were excluded. All other patients were included. A total of 27 isolated STFs identified, along with 143 who underwent LCL. Pre-/postoperative radiographic parameters obtained as well as PROMIS (Patient-Reported Outcomes Measurement Information System) and FAOS (Foot and Ankle Outcome Score) scores. Radiographic and patient reported outcomes both preoperatively and at 1-year follow-up evaluated for both groups. Results STF patients were older ( P < .05), with higher BMIs ( P < .004). STF had significantly worse TNU ( P < .001) than LCL patients, and average change in STF TNU was larger than LCL change postoperatively ( P = .006), after adjusting for age, BMI, gender. PROMIS STF improvement reached statistical significance in Physical Function (P 0.011), for FAOS Pain (P 0.025) and Function ( P = 0.04). Conclusions STF can be used in appropriately indicated patients to correct flatfoot deformity without compromising radiographic or clinical, correcting not only hindfoot valgus, but also talonavicular uncoverage (TNU) and corresponding medial arch collapse. Levels of Evidence: Level III: Retrospective chart review comparison study (case control)

scholarly journals Patient-reported outcomes in obsessive-compulsive disorder

2014 ◽  
Vol 16 (2) ◽  
pp. 239-254 ◽  
Keyword(s):  
Obsessive Compulsive Disorder ◽  
Patient Reported Outcomes ◽  
Functional Disability ◽  
Psychometric Evaluation ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Future Research ◽  
Obsessive Compulsive ◽  
Compulsive Disorder ◽  
Patient Reported

The purpose of the article was to provide an overview of patient-reported outcomes (PROs) and related measures that have been examined in the context of obsessive-compulsive disorder (OCD). The current review focused on patient-reported outcome measures (PROMs) that evaluated three broad outcome domains: functioning, health-related quality of life (HRQoL), and OCD-related symptoms. The present review ultimately included a total of 155 unique articles and 22 PROMs. An examination of the PROs revealed that OCD patients tend to suffer from significant functional disability, and report lower HRQoL than controls. OCD patients report greater symptom severity than patients with other mental disorders and evidence indicates that PROMs are sensitive to change and may be even better than clinician-rated measures at predicting treatment outcomes. Nonetheless, it should be noted that the measures reviewed lacked patient input in their development. Future research on PROMs must involve patient perspectives and include rigorous psychometric evaluation of these measures.

Dosage Changes in Long-Term Botox Use for Laryngeal Dystonia

2008 ◽  
Vol 139 (2_suppl) ◽  
pp. P49-P49
Author(s):  
Hakan Birkent ◽  
Nicole C Maronian ◽  
Patricia F. Waugh ◽  
Albert L Merati ◽  
David Perkel ◽  
...  
Keyword(s):  
Total Dose ◽  
Chart Review ◽  
Retrospective Chart Review ◽  
Duration Of Effect ◽  
Laryngeal Dystonia ◽  
Patient Reported ◽  
Number Of Treatment ◽  
Over Time

Objective Botulinum toxin (BTX) injections continue to be the mainstay of treatment for laryngeal dystonia (LD). Many patients are entering their 2nd and 3rd decade of treatment. In this study, the dosage consistency of BTX injections over time was examined in patients with long-term BTX use for LD. Methods Retrospective chart review, 1990–2007. Patients with adductor-type LD who had received at least 20 injections to the thyroarytenoid (TA) muscles were included in the study. The change of total dose and patient-reported effective weeks were investigated; data of the first 5 injections were excluded to eliminate initial dose searching. Results 55 patients (11 male, 44 female, mean age 60.6) with a mean follow-up period of 149.9 ± 43.7 months (range 44 to 211 months) were identified. Total number of treatment episodes was 1825 with a mean of 33.18 ± 10.37 (range 20 to 58) and a mean interval of 19.1 ± 1.3 (range 2 to 118) weeks. The average total dose of BTX for each treatment episode was 2.15 ± 0.37 U (range 0.125 to 10.00 U). The total dose trended downward over time; this trend became statistically significant at 13th injection. The overall mean duration of effect was 15.5 ± 1.1 (range 1 to 58) weeks and did not show a significant change over time. Conclusions The BTX dose needed for a constant response in the treatment of LD decreases over time, raising the concern that neural recovery from repeated BTX is not infinite.

The Use of Patient-reported Outcomes at an Individual Level – Benefits and Challenges

2010 ◽  
Vol 06 (01) ◽  
pp. 19
Author(s):  
Agnes Czimbalmos ◽  
Andrew Bottomley ◽  
◽  
Keyword(s):  
Patient Reported Outcomes ◽  
Clinical Care ◽  
Healthcare Services ◽  
Individual Level ◽  
Patient Health Status ◽  
Hrqol Data ◽  
Patient Reported ◽  
Patient Health ◽  
Related Quality ◽  
Health Related

The aim of this article is to review the application of patient-reported outcomes (PROs) in clinical care and consider its benefits, challenges and potential improvements. Previous studies demonstrated that health-related quality of life (HRQoL) data provide information to clinicians on patient health status, QoL, symptoms and wellbeing, along with any changes in these, and helps clinicians judge the needs of patients and tailor treatments accordingly. In addition, the benefits of the application of HRQoL tools include the involvement of patients in informed decision-making in terms of their treatment or care, higher patient satisfaction with healthcare services, improved patient–clinician relationships and better communication. In many studies, health professionals have expressed their interest in using these measures but feel they need to better understand them. Despite the wide use of information-gathering questionnaires and their promising results, it is still a challenge to predict the full value of these measures in clinical care. This article addresses these major concerns.

Untangling a web of Electronic Patient Reported Outcomes data to support quality improvement.

2019 ◽  
Vol 37 (27_suppl) ◽  
pp. 311-311
Author(s):  
Meggan Davis ◽  
Erik Winters ◽  
Lisa Acomb ◽  
Matt Palmgren ◽  
Kerry K McMillen ◽  
...  
Keyword(s):  
Patient Reported Outcomes ◽  
Clinical Care ◽  
Program Improvement ◽  
Project Team ◽  
Distress Screening ◽  
Response Distribution ◽  
Data Infrastructure ◽  
Patient Reported ◽  
Volume Response ◽  
Data Tables

311 Background: Adoption of Electronic Patient Reported Outcomes (ePROs) as part of clinical care is aided by the ability to respond to feedback and develop solutions founded on data. This requires access to usage, volume, response, and system performance data, yet with limited resources the infrastructure needed to store and analyze these data is often an afterthought. The Seattle Caner Care Alliance followed an iterative process to create dashboards featuring content-specific metrics while improving the underlying infrastructure of patient-generated data collected via the ePRO program. Methods: For each dashboard, the project team followed 7 steps: 1) Clarify the purpose. 2) Brainstorm requirements with content-specific stakeholders. 3) Create initial drafts for review, testing, and validation. 4) Validate that metrics are clear and provide value. 5) Update dashboards and review with stakeholders. 6) Perform technical clean-up and improvement to data infrastructure. 7) Iterate until all stakeholders approve. Results: 27 data tables were linked to create four content-specific dashboards: Overall Key Performance Indicators (KPI), an experimental dashboard, and responses to chemotherapy symptom and distress screening surveys. The KPI dashboard featured completion rate, adoption rate, survey and intervention volumes with the ability to filter by ePRO type, diagnosis, and intervention. The experimental dashboard allowed the project team to test data points, visualizations and methodologies before creating dashboards or updating data structures. Chemotherapy symptom and distress screening dashboards displayed interventions by symptom or concern, severity, referrals, and response distribution. Conclusions: Data collected via an ePRO program offers an opportunity for improvement during implementation and ongoing program development. An iterative approach to analyzing these data and creating dashboards that engaged stakeholders and focused on data quality was an effective way to untangle a complex web of patient-generated data and to support program improvement. Future ePRO implementation would benefit from the inclusion of a flexible data development approach as part of planning and design.

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