Digital health application for real-time patient-reported outcomes during prostate radiotherapy.

2016 ◽  
Vol 34 (2_suppl) ◽  
pp. 157-157 ◽  
Author(s):  
Daniel Xiao Yang ◽  
Jackson Thea ◽  
Yi An ◽  
James B. Yu
Keyword(s):  
Quality Of Life ◽  
Real Time ◽  
Mobile Applications ◽  
Mobile Application ◽  
Patient Reported Outcomes ◽  
Digital Health ◽  
Prostate Radiotherapy ◽  
Patient Reported

157 Background: The use of digital health technology, including mobile applications, in the clinical setting is becoming increasingly more prevalent. Such technology is currently being explored as clinical research tools. While the side effects of prostate radiotherapy are well documented after treatment, there remains a paucity of data on patient-reported outcomes and changes in quality of life (QOL) during the treatment period. Therefore, mobile applications represent a practical platform to enable patient reporting in real-time during prostate radiotherapy. Methods: Using an existing open source code framework (Apple ResearchKit), we developed a novel mobile application that enables prostate cancer patients to report, either during or immediately following daily radiation treatment, changes in urinary, bowel, sexual, and hormonal QOL domains. The mobile application utilizes validated questions from the Expanded Prostate Index Composite for Clinical Practice (EPIC-CP) Survey, and allows for survey responses to be tracked over time throughout the treatment period and at routine follow up. Results: For the initial phase of our study, we are currently piloting the mobile application at a single institution with a goal of accruing 50 patients. Study results will be compared to data from traditional surveys, which are available at follow-up but impracticable for real-time symptom reporting. By ASCO 2016 Genitourinary Cancers Symposium, we plan to begin the second phase of our study where any patient can enroll online through a mobile software distribution platform (Apple App Store). Conclusions: We demonstrate the feasibility of using a mobile application to enable patients to report quality of life changes in real-time during prostate radiotherapy. Moreover, our application facilitates clinical trials where patient data collection can be automated and completed at scale. Future prospective studies are planned to evaluate validity of clinical trial data gathered through such methodology.

Patient-reported outcomes in congenital cardiac disease: are they as good as you think they are?

2010 ◽  
Vol 20 (S3) ◽  
pp. 143-148 ◽  
Author(s):  
Philip Moons
Keyword(s):  
Quality Of Life ◽  
Cardiac Disease ◽  
Patient Reported Outcomes ◽  
Well Being ◽  
Main Question ◽  
Congenital Cardiac Disease ◽  
Patient Reported ◽  
Satisfaction With Treatment

AbstractPatient-reported outcomes are “any outcome based on data provided by patients or patient proxy as opposed to data provided from other sources”. Examples of patient-reported outcomes are quality of life, well-being, functional status, symptoms, adherence to treatment, satisfaction with treatment, and utility or preference-based measures. The main question of this manuscript is whether patient-reported outcomes in patients with congenital cardiac disease are as good as we think they are. In general, we could say yes, because numerous studies show that patients with congenital cardiac disease have an excellent quality of life. By contrast, we could say no, because patients generally overestimate their functioning, and up to two out of three patients are not compliant with the prescribed therapy or recommendations for follow-up. However, most importantly, we have to say that we do not know whether the patient-reported outcomes are good, because research with patient-reported outcomes in congenital cardiac disease is limited. Hence, patient-reported outcomes should be a priority on the agenda for research in the domain of congenital cardiac disease.

scholarly journals A pilot study of using smartphone application versus routine follow up for patients' care in advanced non-small cell lung cancer (NSCLC).

2019 ◽  
Vol 5 (suppl) ◽  
pp. 9-9
Author(s):  
Naiyarat Prasongsook ◽  
Kasan Seetalarom ◽  
Siriwimon Saichaemchan ◽  
Kitipong Udomdamrongkul
Keyword(s):  
Quality Of Life ◽  
Lung Cancer ◽  
Cancer Care ◽  
Mobile Application ◽  
Advanced Nsclc ◽  
Patient Reported Outcome ◽  
P Value ◽  
Patient Reported

9 Background: Web-based patient reported outcome (PRO) improved quality of life (QoL), and overall survival (OS) in patients with advanced NSCLC who were treating with specific therapy. Lung Cancer Care application is a mobile application program that provides patients with individually tailored information on patient reported outcome. This study aims to invent a novel mobile application evaluating PRO for Thai NSCLC patients, and to evaluate the validity of mobile application. Methods: Our mobile application-based PRO was designed for monitoring quality of life. The validity of the application was tested following guidelines for translating, and validating a questionnaire. The quality of life score (FACT-L score). After the validated mobile application-based PRO, patients with advanced NSCLC were randomized to use mobile application-based PRO versus routine follow-up. The primary endpoint was quality of life (QoL). Secondary endpoint was OS. Results: Thirty-three patients with advanced NSCLC were enrolled. The mean of FACT-L score at baseline in mobile application-based PRO arm and routine follow up arm was similar (90.08 ± 5.66 vs 91.78 ± 5.26, p-value= 0.82). Patients with mobile application group had more FACT-L score at 3 months than patients with routine follow up arm (106 ± 5.97 vs 99.96 ± 5.74, p-value = 0.07). There was a trend towards increased in different mean of FACT-L score at baseline and 3 months in patients with mobile application compared to patients with routine follow up ( p-value = 0.05). The median follow-up time was 5.43 months, patients with mobile application had longer median OS than patients with routine follow up (4 months vs 2.9 months, p-value = 0.5). Conclusions: Lung Cancer Care application based on self-reported symptoms is a novel electronic device for real-time patient care monitoring. Our study results showed trend towards improved quality of life from using this novel mobile application. However, there was small samples for pilot testing, the relatively large sampling errors may reduce the statistical power needed to validate this tool.

scholarly journals Assessment of patient-reported outcomes after polytrauma: protocol for a systematic review

BMJ Open ◽  
2018 ◽  
Vol 8 (3) ◽  
pp. e017571 ◽  
Author(s):  
Irmela Gnass ◽  
Michaela Ritschel ◽  
Silke Andrich ◽  
Silke Kuske ◽  
Kai Moschinski ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Activities Of Daily Living ◽  
Daily Living ◽  
Patient Reported Outcomes ◽  
Short Term ◽  
Patient Reported

IntroductionSurvivors of polytrauma experience long-term and short-term burden that influences their lives. The patients’ view of relevant short-term and long-term outcomes should be captured in instruments that measure quality of life and other patient-reported outcomes (PROs) after a polytrauma. The aim of this systematic review is to (1) collect instruments that assess PROs (quality of life, social participation and activities of daily living) during follow-up after polytrauma, (2) describe the instruments’ application (eg, duration of period of follow-up) and (3) investigate other relevant PROs that are also assessed in the included studies (pain, depression, anxiety and cognitive function).Methods and analysisThe systematic review protocol is developed in line with the Preferred Reporting Items for Systematic Review and Meta-Analysis Protocols statement. MEDLINE, EMBASE, Cumulative Index to Nursing and Allied Health Literature, PsycINFO, Cochrane Central Register of Controlled Trials and the trials registers ClinicalTrials.gov and WHO International Clinical Trials Registry Platform will be searched. Keywords, for example, ‘polytrauma’, ‘multiple trauma’, ‘quality of life’, ‘activities of daily living’ or ‘pain’ will be used. Publications published between January 2005 and the most recent date (currently: August 2016) will be included. In order to present the latest possible results, an update of the search is conducted before publication. The data extraction and a content analysis will be carried out systematically. A critical appraisal will be performed.Ethics and disseminationFormal ethical approval is not required as primary data will not be collected. The results will be published in a peer-reviewed publication.PROSPERO registration numberCRD42017060825.

scholarly journals Utilizing Digital Health to Collect Electronic Patient-Reported Outcomes in Prostate Cancer: Single-Arm Pilot Trial

10.2196/12689 ◽  
2020 ◽  
Vol 22 (3) ◽  
pp. e12689 ◽  
Author(s):  
Christine Tran ◽  
Adam Dicker ◽  
Benjamin Leiby ◽  
Eric Gressen ◽  
Noelle Williams ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Prostate Cancer ◽  
Cancer Treatment ◽  
Digital Literacy ◽  
Patient Reported Outcomes ◽  
Digital Health ◽  
Compliance Rate ◽  
Patient Reported ◽  
Literacy Level

Background Measuring patient-reported outcomes (PROs) requires an individual’s perspective on their symptoms, functional status, and quality of life. Digital health enables remote electronic PRO (ePRO) assessments as a clinical decision support tool to facilitate meaningful provider interactions and personalized treatment. Objective This study explored the feasibility and acceptability of collecting ePROs using validated health-related quality of life (HRQoL) questionnaires for prostate cancer. Methods Using Apple ResearchKit software, the Strength Through Insight app was created with content from validated HRQoL tools 26-item Expanded Prostate Cancer Index Composite (EPIC) or EPIC for Clinical Practice and 8-item Functional Assessment of Cancer Therapy Advanced Prostate Symptom Index. In a single-arm pilot study with patients receiving prostate cancer treatment at Thomas Jefferson University Hospital and affiliates, participants were recruited, and instructed to download Strength Through Insight and complete ePROs once a week over 12 weeks. A mixed methods approach, including qualitative pre- and poststudy interviews, was used to evaluate the feasibility and acceptability of Strength Through Insight for the collection and care management of cancer treatment. Results Thirty patients consented to the study; 1 patient failed to complete any of the questionnaires and was left out of the analysis of the intervention. Moreover, 86% (25/29) reached satisfactory questionnaire completion (defined as completion of 60% of weekly questions over 12 weeks). The lower bound of the exact one-sided 95% CI was 71%, exceeding the 70% feasibility threshold. Most participants self-identified with having a high digital literacy level (defined as the ability to use, understand, evaluate, and analyze information from multiple formats from a variety of digital sources), and only a few participants identified with having a low digital literacy level (defined as only having the ability to gather information on the Web). Interviews were thematically analyzed to reveal the following: (1) value of emotional support and wellness in cancer treatment, (2) rise of social patient advocacy in online patient communities and networks, (3) patient concerns over privacy, and (4) desire for personalized engagement tools. Conclusions Strength Through Insight was demonstrated as a feasible and acceptable method of data collection for ePROs. A high compliance rate confirmed the app as a reliable tool for patients with localized and advanced prostate cancer. Nearly all participants reported that using the smartphone app is easier than or equivalent to the traditional paper-and-pen approach, providing evidence of acceptability and support for the use of remote PRO monitoring. This study expands on current research involving the value of digital health, as a social and behavioral science, augmented with technology, can begin to contribute to population health management, as it shapes psychographic segmentation by demographic, socioeconomic, health condition, or behavioral factors to group patients by their distinct personalities and motivations, which influence their choices. Trial Registration ClinicalTrials.gov NC03197948; http://clinicaltrials.gov/ct2/show/NC03197948

scholarly journals Utilizing Digital Health to Collect Electronic Patient-Reported Outcomes in Prostate Cancer: Single-Arm Pilot Trial (Preprint)

2018 ◽  
Author(s):  
Christine Tran ◽  
Adam Dicker ◽  
Benjamin Leiby ◽  
Eric Gressen ◽  
Noelle Williams ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Prostate Cancer ◽  
Cancer Treatment ◽  
Digital Literacy ◽  
Patient Reported Outcomes ◽  
Digital Health ◽  
Compliance Rate ◽  
Patient Reported ◽  
Literacy Level

BACKGROUND Measuring patient-reported outcomes (PROs) requires an individual’s perspective on their symptoms, functional status, and quality of life. Digital health enables remote electronic PRO (ePRO) assessments as a clinical decision support tool to facilitate meaningful provider interactions and personalized treatment. OBJECTIVE This study explored the feasibility and acceptability of collecting ePROs using validated health-related quality of life (HRQoL) questionnaires for prostate cancer. METHODS Using Apple ResearchKit software, the <i>Strength Through Insight</i> app was created with content from validated HRQoL tools 26-item Expanded Prostate Cancer Index Composite (EPIC) or EPIC for Clinical Practice and 8-item Functional Assessment of Cancer Therapy Advanced Prostate Symptom Index. In a single-arm pilot study with patients receiving prostate cancer treatment at Thomas Jefferson University Hospital and affiliates, participants were recruited, and instructed to download <i>Strength Through Insight</i> and complete ePROs once a week over 12 weeks. A mixed methods approach, including qualitative pre- and poststudy interviews, was used to evaluate the feasibility and acceptability of <i>Strength Through Insight</i> for the collection and care management of cancer treatment. RESULTS Thirty patients consented to the study; 1 patient failed to complete any of the questionnaires and was left out of the analysis of the intervention. Moreover, 86% (25/29) reached satisfactory questionnaire completion (defined as completion of 60% of weekly questions over 12 weeks). The lower bound of the exact one-sided 95% CI was 71%, exceeding the 70% feasibility threshold. Most participants self-identified with having a high digital literacy level (defined as the ability to use, understand, evaluate, and analyze information from multiple formats from a variety of digital sources), and only a few participants identified with having a low digital literacy level (defined as only having the ability to gather information on the Web). Interviews were thematically analyzed to reveal the following: (1) value of emotional support and wellness in cancer treatment, (2) rise of social patient advocacy in online patient communities and networks, (3) patient concerns over privacy, and (4) desire for personalized engagement tools. CONCLUSIONS <i>Strength Through Insight</i> was demonstrated as a feasible and acceptable method of data collection for ePROs. A high compliance rate confirmed the app as a reliable tool for patients with localized and advanced prostate cancer. Nearly all participants reported that using the smartphone app is easier than or equivalent to the traditional paper-and-pen approach, providing evidence of acceptability and support for the use of remote PRO monitoring. This study expands on current research involving the value of digital health, as a social and behavioral science, augmented with technology, can begin to contribute to population health management, as it shapes psychographic segmentation by demographic, socioeconomic, health condition, or behavioral factors to group patients by their distinct personalities and motivations, which influence their choices. CLINICALTRIAL ClinicalTrials.gov NC03197948; http://clinicaltrials.gov/ct2/show/NC03197948

scholarly journals P-BN11 Patient Reported Outcomes of Phasix™ ST Mesh for Laparoscopic Hiatal Hernia Repair

2021 ◽  
Vol 108 (Supplement_9) ◽  
Author(s):  
Yan Yu Tan ◽  
Sri Vishnu Thulasiraman ◽  
Phanibhushana Munipalle ◽  
Yirupaiahgari Viswanath
Keyword(s):  
Quality Of Life ◽  
Hernia Repair ◽  
Hiatal Hernia ◽  
Patient Reported Outcomes ◽  
Hiatal Hernia Repair ◽  
Complication Rates ◽  
Laparoscopic Hiatal Hernia Repair ◽  
Patient Reported

Abstract Background Laparoscopic hiatal hernia repair continues to suffer from high recurrence rates, which has prompted the use of mesh reinforcement by some surgeons. Use of mesh however remains controversial due to its association with complications such as erosion, fibrosis and oesophageal stenosis. Biosynthetic Poly-4-Hydroxybutyrate Phasix™ ST mesh is an emerging technology which combines the durability of synthetic mesh with the remodelling characteristics of biologic mesh and includes an anti-adhesion hydrogel barrier. There is a paucity of patient reported outcome data for Phasix™ ST mesh. This study evaluates early patient reported outcomes following laparoscopic hiatal hernia repair with Phasix™ ST mesh. Methods Adult patients undergoing laparoscopic hiatal hernia repair with Phasix™ ST mesh between July 2020 to June 2021 at our institution were identified. Prospective data, including demographic data and complication rates, was collected from electronic and paper medical records. The 12-Item Short Form Survey (SF-12) was administered to assess quality of life pre-operatively and post-operatively with a minimum 30-day follow-up. Results Fourteen patients (12 female, one male) were included with a median age of 66 years (range 52-79). There were no intraoperative complications, mesh-related complications, re-operation, re-admission, or recurrence at a median follow-up of 4 months (IQR 4.0). Median physical health component (PHC) score was 32.7 (IQR 6.2) at baseline and increased to 41.6 (IQR 13.7) post-operatively. Median difference in PHC score was +11.4 (IQR 10.7). Median mental health component (MHC) score was 39.8 (IQR 12.5) at baseline and increased to 57.4 (IQR 8.2) post-operatively. Mean difference in MHC score was +17.7 (IQR 15.9). Conclusions To our knowledge, this is the first report of outcomes on the use of Phasix™ ST mesh for laparoscopic hiatal hernia repair in the United Kingdom. Our study found that it is associated with improvements in both physical and mental quality of life in the short-term post-operative follow-up, although there is some variation in the degree of improvement reported.

scholarly journals Patient-reported outcomes of occipitocervical and atlantoaxial fusions in children

2017 ◽  
Vol 19 (1) ◽  
pp. 85-90 ◽  
Author(s):  
Aditya Vedantam ◽  
Daniel Hansen ◽  
Valentina Briceño ◽  
Alison Brayton ◽  
Andrew Jea
Keyword(s):  
Quality Of Life ◽  
Regression Analysis ◽  
Patient Reported Outcomes ◽  
Pediatric Patients ◽  
Linear Regression Analysis ◽  
Multivariate Linear Regression Analysis ◽  
Atlantoaxial Fusion ◽  
Patient Reported

OBJECTIVE There is limited literature on patient-reported outcomes (PROs) and health-related quality of life (HRQOL) outcomes in pediatric patients undergoing surgery for craniovertebral junction pathology. The aim of the present study was to assess surgical and quality of life outcomes in children who had undergone occipitocervical or atlantoaxial fusion. METHODS The authors retrospectively reviewed the demographics, procedural data, and outcomes of 77 consecutive pediatric patients who underwent posterior occipitocervical or atlantoaxial fusion between 2008 and 2015 at Texas Children's Hospital. Outcome measures (collected at last follow-up) included mortality, neurological improvement, complications, Scoliosis Research Society Outcomes Measure–22 (SRS-22) score, SF-36 score, Neck Disability Index (NDI), and Pediatric Quality of Life Inventory (PedsQL). Multivariate linear regression analysis was performed to identify factors affecting PROs and HRQOL scores at follow-up. RESULTS The average age in this series was 10.6 ± 4.5 years. The median follow-up was 13.9 months (range 0.5–121.5 months). Sixty-three patients (81.8%) were treated with occipitocervical fusion, and 14 patients (18.1%) were treated with atlantoaxial fusion. The American Spinal Injury Association (ASIA) grade at discharge was unchanged in 73 patients (94.8%). The average PRO metrics at the time of last follow-up were as follows: SRS-22 score, 4.2 ± 0.8; NDI, 3.0 ± 2.6; the parent's PedsQL (ParentPedsQL) score, 69.6 ± 22.7, and child's PedsQL score, 75.5 ± 18.7. Multivariate linear regression analysis revealed that older age at surgery was significantly associated with lower SRS-22 scores at follow-up (B = −0.06, p = 0.03), and the presence of comorbidities was associated with poorer ParentPedsQL scores at follow-up (B = −19.68, p = 0.03). CONCLUSIONS This study indicates that occipitocervical and atlantoaxial fusions in children preserve neurological function and are associated with acceptable PROs and ParentPedsQL scores, considering the serious nature and potential for morbidity in this patient population. However, longer follow-up and disease-specific scales are necessary to fully elucidate the impact of occipitocervical and atlantoaxial fusions on children.

Integrative oncology consultation and symptom palliation: Analysis of patient-reported outcomes at a comprehensive cancer center.

2016 ◽  
Vol 34 (26_suppl) ◽  
pp. 84-84
Author(s):  
Gabriel Lopez ◽  
Jennifer Leigh McQuade ◽  
Richard T. Lee ◽  
Jane Williams ◽  
Amy Spelman ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Patient Reported Outcomes ◽  
Advanced Disease ◽  
Comprehensive Cancer Center ◽  
Integrative Oncology ◽  
Patient Reported ◽  
Edmonton Symptom Assessment Scale ◽  
Regional Disease

84 Background: Patients (pts) receiving cancer care are increasingly interested in complementary health approaches to improve symptoms and quality of life. We report on demographics and patient reported outcomes in an integrative oncology (IO) clinic. Methods: Pts presenting for IO consultation or follow-up completed: Measure Yourself Concerns and Wellbeing (MYCaW), Edmonton Symptom Assessment Scale (ESAS), Short Form 12 (SF-12) quality of life (QOL) scale, and an overall satisfaction questionnaire. Consultations were provided by medical oncologists. Results: 2,474 consultations were conducted from 9/2009 to 12/2013; 26.0% (n = 643) had ≥ 1 follow-up visit (mean 3.2; SD1.8). Most were female (69%) and white (75%); most frequent cancer types was breast (29%); 29% of pts had advanced disease. At baseline, ESAS scores were highest for Sleep (4.2; SD 2.8), Fatigue (4.0; SD 2.8), Well-Being (3.8 SD 2.6) and Anxiety (3.1; SD 2.9). Those with advanced disease had significantly higher baseline ESAS scores for pain, nausea, shortness of breath, and appetite; higher ESAS subscale scores for physical and global distress; lower SF-12 physical health scores; and were more interested in developing an integrative/holistic approach and appetite. Those with loco-regional disease were more interested in overall health, hot flashes, and dry mouth. For ESAS baseline scores ≥ 4 and follow up within 30 days of the initial consult, we observed overall improvement in ESAS symptoms (38-60% of pts with ESAS decrease ≥ 1). Overall satisfaction was high at both initial encounter (9.4; SD 1.3) and first follow up (9.5; SD 1.2). Patients were satisfied to very satisfied with how well MYCaW concern 1 and 2 were addressed: 8.0 (SD 2.2) and 9.1 (SD 1.8). No difference in overall satisfaction was observed comparing those with advanced vs loco-regional disease. Conclusions: Most pts presenting for integrative oncology consultation have early stage disease, relatively low symptom burden, and are most interested in support for overall health. Patients were overall very satisfied with how well their top concerns were addressed, with significant improvements in symptom distress.

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