Barriers to widespread implementation of patient-reported outcome platforms for cancer patients.

2018 ◽  
Vol 36 (34_suppl) ◽  
pp. 107-107
Author(s):  
Jungyeon Park ◽  
Júlia Carolina Almeida Chaves

107 Background: Patient-reported outcome (PRO) platforms for cancer patients have shown to be effective in improving overall survival, quality of life, and adherence to medication in studies. However, due to controlled environments and limited regional scope, they do not shed light on the barriers for widespread PRO implementation. This study aims to identify such barriers by studying user demographics and usage patterns of an existing free Brazilian PRO mobile app. Methods: From Dec. 2016 to Jul. 2018, 1,246 cancer patients voluntarily registered on the mobile app downloadable on Google Play Store. Patients could report symptoms, physical activity, hours of sleep, weight, fever, overall well-being, and reasons for gratitude on the app. Other features included alarms for medications and a record of patients' hospitals and medical staff. Data collected by the app were analyzed for primary outcomes of user demographics and app usage patterns. Results: Out of the 1,246 registered patients, 44.1% were between the ages of 20 and 49 while only 11.3% were over the age of 65. Half of the patients never logged symptoms, and only 3.2% recorded symptoms more than 10 times. Physical activity, hours of sleep, and weight were each reported by less than 2% of patients. Surprisingly, 37.7% of patients recorded reasons for gratitude a mean of 3.2 times (SD = 10.3), more than the mean 2.9 times (SD = 8.6) that patients reported symptoms. Reporting overall well-being was the most used feature with 50.3% of patients having used it at least once with a mean of 3.9 times (SD = 17.2). Conclusions: Compared to closed short-term small-scale studies, patients engaged significantly less with the unrestricted open-access PRO platform, in particular geriatric patients. This is a significant barrier to widespread implementation as PRO's efficacy relies on consistent patient reports, and as cancer is more common among the elderly. These issues may be due to lack of guidance and supervision from medical/non-medical staff, absence of education on PRO's purpose, or access to technology caused by regional cultural differences. Further research on the cause of and solution for low patient engagement is needed for successful implementation in less-guided environments.

Circulation ◽  
2020 ◽  
Vol 141 (Suppl_1) ◽  
Author(s):  
Favel L Mondesir ◽  
Susan Zickmund ◽  
Patrick Galyean ◽  
Serena Yang ◽  
Grace Perry ◽  
...  

Background: Patient-reported outcome (PRO) assessments are commonly used in clinical heart failure (HF) trials and have been shown to be valid, reliable, sensitive measures of patients’ symptoms, function and quality of life, as well as prognostic of clinical events. To be used in routine care, they also need to be interpretable to providers and patients. Patients’ perspectives on PRO collection and results communication have not been studied. Methods: We conducted a mixed methods study of 24 ambulatory adult HF patients (50% men) who completed PROs as part of care at a HF clinic. Study procedures included (1) qualitative telephone interviews and (2) quantitative surveys following interviews. We employed thematic analysis to analyze and code transcripts using an iterative coding process and descriptive statistics to analyze the survey. Qualitative findings were purposefully linked to quantitative results. Findings: Three themes in qualitative analyses were linked to the quantitative survey: 1. Utility of data: Most participants noted that PRO questionnaires were a useful tool to better understand their health if their providers discussed the results with them, and to provide additional information to help improve their treatment. Ninety-two % (22/24) of participants strongly agreed or agreed (SA/A) and 8% (2/24) were neutral that completing the questionnaires changed their care and improved their health. Ninety-six % (23/24) of participants SA/A and 4% (1/24) were neutral that completing the questionnaires would make evaluation of their well-being more accurate. 2. Length and frequency of data collection: Most participants felt that questionnaire length (13-29 questions completed in 3-8 minutes on average) and frequency of implementation (at every visit) were satisfactory. Sixty-three % (15/24) and 37% (9/24) of participants felt that maximum number of questions should be 5-15 and >15, respectively. Eighty-three % (20/24) and 17% (4/24) of participants felt that maximum time required for completion should be 5 or 10 and >10 minutes, respectively. 3. Communication with providers: Most participants noted that their providers discussed results of PRO questionnaires with them only once or not at all and participants who had this discussion with their providers felt that providers understood their responses. Sixty-two % (15/24), 21% (5/24) and 17% (4/24) of participants SA/A, were neutral and disagreed or strongly disagreed that their providers effectively discussed results of their PROs with them. Conclusions: Qualitative results provided depth and interpretability of quantitative survey results. These results indicate successful implementation and utility of PRO questionnaires in the HF clinic, while highlighting a need for more frequent discussion of PRO results between providers and patients. Further use of PROs may lead to improved cardiovascular health and prognosis in HF.


2018 ◽  
Author(s):  
Rami A El Shafie ◽  
Dorothea Weber ◽  
Nina Bougatf ◽  
Tanja Sprave ◽  
Dieter Oetzel ◽  
...  

BACKGROUND Consumer electronics and Web-enabled mobile devices are playing an increasing role in patient care, and their use in the oncologic sector opens up promising possibilities in the fields of supportive cancer care and systematic patient follow-up. OBJECTIVE The objective of our study was to assess the acceptance and possible benefits of a mobile app–based concept for supportive care of cancer patients undergoing radiotherapy. METHODS In total, 975 patients presenting for radiotherapy due to breast or prostate cancer were screened; of them, 200 owned a smartphone and consented to participate in the survey. Patients were requested to complete a questionnaire at 2 time points: prior to the initiation (T0) and after the completion (T1) of radiotherapy. The questionnaire included questions about the habits of smartphone usage, technical knowledge and abilities of the participants, readiness to use a mobile app within the context of radiotherapy, possible features of the mobile app, and general attitude toward the different aspects of oncologic treatments. For quantitative analysis, sum scores were calculated for all areas of interest, and results were correlated with patient characteristics. Additionally, answers were quantitatively compared between time points T0 and T1. RESULTS Median patient age was 57 (range 27-78) years. Of the 200 participants, 131 (66.2%) reported having the ability to use their smartphones with minimal to no help and 75.8% (150/200) had not used their smartphones in a medical context before. However, 73.3% (146/200) and 83.4% (166/200) of patients showed a strong interest in using a mobile app for supportive care during radiotherapy and as part of the clinical follow-up, respectively. Patients most commonly requested functionalities regarding appointment scheduling in the clinic (176/200, 88.0%) and the collection of patient-reported outcome data regarding their illness, therapy, and general well-being (130/200, 65.0%). Age was identified as the most influential factor regarding patient attitude, with patients aged <55 years being significantly more inclined toward and versed in smartphone use (P<.001). The acceptance of mobile apps was significantly higher in patients exhibiting a Karnofsky performance index <80% (P=.01). Support in the context of therapy-related side effects was judged most important by patients with poor clinical performance (P=.006). The overall acceptance of mobile apps in the context of radiotherapy surveillance was high at a median item sum score of 71.4/100 and was not significantly influenced by tumor stage, age, gender, treatment setting, or previous radiotherapies. CONCLUSIONS The acceptance of mobile apps for the surveillance and follow-up of cancer patients undergoing radiotherapy is high; this high acceptance level will serve as a basis for future clinical trials investigating the clinical benefits of mobile app–based treatment support. Introduction of mobile apps into the clinical routine should be considered as an opportunity to improve and intensify supportive treatment for cancer patients.


2021 ◽  
pp. 155335062199887
Author(s):  
Alaa El-Hussuna ◽  
Ines Rubio-Perez ◽  
Monica Millan ◽  
Gianluca Pellino ◽  
Ionut Negoi ◽  
...  

Purpose. The primary aim of the study was to review the existing literature about patient-reported outcome measures (PROMs) in colorectal cancer and IBD. The secondary aim was to present a road map to develop a core outcome set via opinion gathering using social media. Method. This study is the first step of a three-step project aimed at constructing simple, applicable PROMs in colorectal surgery. This article was written in a collaborative manner with authors invited both through Twitter via the #OpenSourceResearch hashtag. The 5 most used PROMs were presented and discussed as slides/images on Twitter. Inputs from a wide spectrum of participants including researchers, surgeons, physicians, nurses, patients, and patients’ organizations were collected and analyzed. The final draft was emailed to all contributors and 6 patients’ representatives for proofreading and approval. Results. Five PROM sets were identified and discussed: EORTC QLQ-CR29, IBDQ short health questionnaire, EORTC QLQ-C30, ED-Q5-5L, and Short Form-36. There were 315 tweets posted by 50 tweeters with 1458 retweets. Awareness about PROMs was generally limited. The general psycho-physical well-being score (GPP) was suggested and discussed, and then a survey was conducted in which more than 2/3 of voters agreed that GPP covers the most important aspects in PROMs. Conclusion. Despite the limitations of this exploratory study, it offered a new method to conduct clinical research with opportunity to engage patients. The general psycho-physical well-being score suggested as simple, applicable PROMs to be eventually combined procedure-specific, disease-specific, or symptom-specific PROMs if needed.


2020 ◽  
Vol 41 (Supplement_2) ◽  
Author(s):  
A Salzwedel ◽  
I Koran ◽  
E Langheim ◽  
A Schlitt ◽  
J Nothroff ◽  
...  

Abstract Introduction Comprehensive cardiac rehabilitation (CR) programs based on the bio-psycho-social approach of the international classification of functioning and disease are carried out to achieve improved prognosis, superior health-related quality of life (HRQL) and social integration. We aimed to identify predictors of returning to work (RTW) and HRQL among cardiovascular risk factors and physical performance as well as patient-reported outcome measures (PROMs) modifiable during CR. Methods We designed a prospective observational multi-center study and enrolled 1,586 patients (2017/18) in 12 German rehabilitation centers regardless of their primary allocation diagnoses (e.g. acute myocardial infarction (AMI), coronary artery bypass grafting (CABG), coronary artery disease (CAD), valvular disease). Besides general data (e.g. age, gender, diagnoses), parameters of risk factor management (e.g. smoking, lipid profile, hypertension, lifestyle change motivation), physical performance (e.g. maximum exercise capacity, endurance training load, 6-min walking distance), and PROMs (e.g. depression, heart-focused anxiety, HRQL, subjective well-being, somatic and mental health, pain, general self-efficacy, pension desire as well as self-assessment of occupational prognosis using several questionnaires) were documented at CR admission and discharge. 6 months after discharge, status of RTW and HRQL (SF-12) were captured by a follow-up (FU) survey and analyzed in multivariable regression models with multiple imputation of missing values. Results Out of the study participants, 1,262 patients (54±7 years, 77% men) responded to the follow-up survey and could be analyzed regarding the outcome parameters. Most of them were assigned to CR primarily due to AMI (40%) or CAD without myocardial infarction (18%), followed by heart valve diseases in 12% of patients and CABG (8%). 864 patients (69%) returned to work within the follow-up period. Pension desire, negative self-assessed occupational prognosis, heart-focussed anxiety, major life events, smoking and heart failure were negatively associated with RTW, while higher endurance training load, HRQL and work stress were positively associated (Figure 1). HRQL after 6 months was determined more by PROMs (e.g. pension desire, heart-focused anxiety, physical/mental HRQL in SF-12, physical/mental health in indicators of rehab-status questionnaire (IRES-24), stress, well-being in the World Health Organization well-being index and self-efficacy expectations) than by clinical parameters or physical performance. Conclusions Patient-reported outcome measures predominantly influenced RTW and HRQL in heart-disease patients, whereas patients' pension desire and heart-focussed anxiety had a dominant impact on all investigated endpoints. Therefore, the multi-component CR approach focussing on psychosocial support is crucial for subjective health prognosis and occupational resumption. Figure 1. Predictors of returning to work Funding Acknowledgement Type of funding source: Public grant(s) – National budget only. Main funding source(s): German pension insurance


Author(s):  
J. Frikkel ◽  
M. Beckmann ◽  
N. De Lazzari ◽  
M. Götte ◽  
S. Kasper ◽  
...  

Abstract Purpose Physical activity (PA) is recommended to improve advanced cancer patients’ (ACP) physical functioning, fatigue, and quality of life. Yet, little is known about ACPs’ attitude towards PA and its influence on fatigue and depressiveness over a longer period. This prospective, non-interventional cohort study examined ACPs’ fatigue, depression, motivation, and barriers towards PA before and after 12 months of treatment among ACP Methods Outpatients with incurable cancer receiving treatment at a German Comprehensive Cancer Center reporting moderate/severe weakness/tiredness during self-assessment via MIDOS II were enrolled. Fatigue (FACT-F), depression (PHQ-8), cancer-related parameters, self-assessed PA behavior, motivation for and barriers against PA were evaluated (T0). Follow-up data was acquired after 12 months (T1) using the same questionnaire. Results At follow-up, fatigue (p=0.017) and depressiveness (p=0.015) had increased in clinical relevant extent. Physically active ACP did not show significant progress of FACT-F (p=0.836) or PHQ-8 (p=0.799). Patient-reported barriers towards PA remained stable. Logistic regression analyses identified motivation as a positive predictor for PA at both time points (T0, β=2.152, p=0.017; T1, β =2.264, p=0.009). Clinically relevant depression was a negative predictor for PA at T0 and T1 (T0, β=−3.187, p=0.044; T1, β=−3.521, p=0.041). Conclusion Our findings emphasize the importance of psychological conditions in physical activity behavior of ACP. Since psychological conditions seem to worsen over time, early integration of treatment is necessary. By combining therapy approaches of cognitive behavioral therapy and exercise in interdisciplinary care programs, the two treatment options might reinforce each other and sustainably improve ACPs’ fatigue, physical functioning, and QoL. Trial registration German Register of Clinical Trials, DRKS00012514, registration date: 30.05.2017


2021 ◽  
Vol 39 (15_suppl) ◽  
pp. e24117-e24117
Author(s):  
Claire Piccinin ◽  
Andrew Bottomley ◽  
Galina Velikova ◽  
Mogens Groenvold ◽  
Dagmara Kuliś ◽  
...  

e24117 Background: The EORTC Item Library is an online, interactive platform comprised of 950 distinct questions (items) from 67 different EORTC patient-reported outcome (PRO) questionnaires, covering a range of symptomatic toxicities, types of functioning, and impact on quality of life. These PROs provide a patient-centred perspective, complementing clinician adverse event (AE) reporting using classifications like the CTCAE. In order to summarize the coverage of symptomatic toxicities and facilitate the identification of items through use of a standardized framework, a mapping study was carried out, aimed at creating a coding system to classify EORTC items according to the CTCAE and link them to corresponding AEs. Methods: All items were searched for within the CTCAE (v5.0) using a deductive approach. Items were coded as linked if they were described within an AE’s title, description, or grading. Items not suitable for CTCAE coding were inductively assigned a descriptive classification. Descriptive classifications were also applied along with CTCAE codes when they provided additional information. Symptoms described in EORTC items but not located in the CTCAE were coded as missing and additional codes were assigned to highlight EORTC items capturing multiple underlying issues and diagnosis only CTCAE codes. Two raters independently coded 249 items and agreement was calculated. The remaining 701 items were coded by one rater and verified by the second, with a third introduced to discuss any discrepancies until a consensus was reached. Results: Agreement for raters following independent coding was 77.9% for at least one AE per item. In total, 625 (65.8%) items were linked to 208 different AEs. Fatigue was the most commonly linked AE, representing 4.9% of linked AEs. The majority of linked items were associated with one (65.6%) or two (23.5%) AEs, with some linked to three or more (10.9%). Multiple linkage resulted from different symptoms relating to the same issue/diagnosis or one symptom relating to multiple diagnoses. Two symptoms captured by six EORTC items but not found in the CTCAE were identified: bowel urgency and tenesmus. Seven descriptive non-CTCAE classifications emerged, with most of these covering the emotional impact of symptom, diagnosis, or treatment (33.6%) and information/satisfaction with care (31.7%). Nineteen items (2%) were linked to multiple underlying issues, and 43 (4.5%) to diagnosis only CTCAE codes. Conclusions: The EORTC Item Library provides extensive coverage of CTCAE symptomatic toxicities, along with other issues that are important to cancer patients, including emotional well-being and satisfaction with care services. Classifying symptomatic PRO items following the CTCAE clinical framework may facilitate future PRO selection and use in clinical trials and routine care.


2021 ◽  
Author(s):  
Fabrice Denis

UNSTRUCTURED Abstract Digital electronic patient reported outcome (ePRO) systems for symptom monitoring in cancer patients demonstrated evidence of quality of life and survival benefit in controlled trials. They are beginning to be used in routine oncology practice. Many software editors provide solutions to clinicians but how can clinician choose it? We propose a synthesis of the main questions about effectiveness, safety and functionality of ePRO system that may ask clinician to software providers to be helped in selecting a software in order to obtain the best value of these tools for their patients and their practice.


10.2196/14939 ◽  
2020 ◽  
Vol 8 (1) ◽  
pp. e14939
Author(s):  
Laury Quaedackers ◽  
Jan De Wit ◽  
Sigrid Pillen ◽  
Merel Van Gilst ◽  
Nikolaos Batalas ◽  
...  

Background Narcolepsy is a chronic sleep disorder with a broad variety of symptoms. Although narcolepsy is primarily characterized by excessive daytime sleepiness and cataplexy (loss of muscle control triggered by emotions), patients may suffer from hypnagogic hallucinations, sleep paralysis, and fragmented night sleep. However, the spectrum of narcolepsy also includes symptoms not related to sleep, such as cognitive or psychiatric problems. Symptoms vary greatly among patients and day-to-day variance can be considerable. Available narcolepsy questionnaires do not cover the whole symptom spectrum and may not capture symptom variability. Therefore, there is a clinical need for tools to monitor narcolepsy symptoms over time to evaluate their burden and the effect of treatment. Objective This study aimed to describe the design, development, implementation, and evaluation of the Narcolepsy Monitor, a companion app for long-term symptom monitoring in narcolepsy patients. Methods After several iterations during which content, interaction design, data management, and security were critically evaluated, a complete version of the app was built. The Narcolepsy Monitor allows patients to report a broad spectrum of experienced symptoms and rate their severity based on the level of burden that each symptom imposes. The app emphasizes the reporting of changes in relative severity of the symptoms. A total of 7 patients with narcolepsy were recruited and asked to use the app for 30 days. Evaluation was done by using in-depth interviews and user experience questionnaire. Results We designed and developed a final version of the Narcolepsy Monitor after which user evaluation took place. Patients used the app on an average of 45.3 (SD 19.2) days. The app was opened on 35% of those days. Daytime sleepiness was the most dynamic symptom, with a mean number of changes of 5.5 (SD 3.7) per month, in contrast to feelings of anxiety or panic, which was only moved 0.3 (SD 0.7) times per month. Mean symptom scores were highest for daytime sleepiness (1.8 [SD 1.0]), followed by lack of energy (1.6 [SD 1.4]) and often awake at night (1.5 [SD 1.0]). The personal in-depth interviews revealed 3 major themes: (1) reasons to use, (2) usability, and (3) features. Overall, patients appreciated the concept of ranking symptoms on subjective burden and found the app easy to use. Conclusions The Narcolepsy Monitor appears to be a helpful tool to gain more insight into the individual burden of narcolepsy symptoms over time and may serve as a patient-reported outcome measure for this debilitating disorder.


2021 ◽  
Author(s):  
Yaqian Feng ◽  
Wei Dai ◽  
Yaqin Wang ◽  
Jia Liao ◽  
Xing Wei ◽  
...  

Abstract BackgroundLung cancer patients without chief complaints have been increasingly identified by physical examination. This study aimed to profile and compare chief complaints with patient-reported symptoms of lung cancer patients before surgery.MethodsData was extracted from a multicenter, prospective longitudinal study (CN-PRO-Lung 1) in China from November 2017 and January 2020. A comparison between chief complaints and patient-reported symptoms was analyzed using the Chi-squared test.ResultsA total of 201 (50.8%) lung cancer patients without chief complaints were found by physical examination at admission, and 195(49.2%) patients had chief complaints. The top 5 chief complaints were coughing (38.1%), expectoration (25.5%), chest pain (13.6%), hemoptysis (10.6%), and shortness of breath (5.1%). There were significantly more patients with chief complaints of coughing (38.1% vs. 15.0 %, P <0.001) and pain (20.5% vs. 6.9%, P<0.001) than those with the same symptoms rated ≥4 via MDASI-LC. There were less patients with chief complaints of fatigue (1.8% vs. 10.9%, P<0.001), nausea (0.3% vs. 2.5%, P=0.006), and vomiting (0.3% vs. 1.8%, p=0.032) than those with the same symptoms rated ≥4 via MDASI-LC. In patients without chief complaints, the five most common moderate to severe patient-reported symptoms were disturbed sleep (19.5%), distress (13.5%), dry mouth (13%), sadness (12%), and difficulty remembering (11.1%).ConclusionsSymptoms of lung cancer patients not included in the chief complaint could be identified via a patient-reported outcome instrument, suggesting the necessity of implementing the patient-reported outcome assessment before lung cancer surgery for better patient care.


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