Feasibility and accessibility of electronic patient-reported outcome measures using a smartphone during routine chemotherapy: a pilot study

Bae, Woo Kyun; Kwon, Jihyun; Lee, Hyun Woo; Lee, Sang Cheol; Song, Eun-Kee; Shim, Hyeok; Ryu, Keun Ho; Song, Jemin; Seo, Sungbo; Yang, Yaewon; Park, Jong Hyock; Lee, Ki Hyeong; Han, Hye Sook

doi:10.1007/s00520-018-4232-z

Cited by 25 publications

(41 citation statements)

References 26 publications

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“…Weekly response rates ( Table 2 ) increased over time, with the highest response rate obtained in week 12 at 42.0% (42/100). This is in keeping with previously published ePRO response rates [ 20 , 21 , 33 ]. There are a couple of possible explanations for this observation of later surveys achieving higher response rates.…”

Section: Discussionsupporting

confidence: 92%

“…Several research studies support the advantages of collecting ePROs through mobile technology application, secure messaging (SM), or text messaging [ 16 - 18 ], but there is little published research on the use of HIT to collect CIH-related ePROs within the unique Veteran Administration (VA) system [ 19 ]. There is a need to develop a practical process for collecting and integrating ePROs to improve patient care within the VHA [ 20 - 22 ].…”

Section: Introductionmentioning

confidence: 99%

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Using Electronic Data Collection Platforms to Assess Complementary and Integrative Health Patient-Reported Outcomes: Feasibility Project

Haun¹,

Alman²,

Melillo³

et al. 2020

JMIR Med Inform

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Background The Veteran Administration (VA) Office of Patient-Centered Care and Cultural Transformation is invested in improving veteran health through a whole-person approach while taking advantage of the electronic resources suite available through the VA. Currently, there is no standardized process to collect and integrate electronic patient-reported outcomes (ePROs) of complementary and integrative health (CIH) into clinical care using a web-based survey platform. This quality improvement project enrolled veterans attending CIH appointments within a VA facility and used web-based technologies to collect ePROs. Objective This study aimed to (1) determine a practical process for collecting ePROs using patient email services and a web-based survey platform and (2) conduct analyses of survey data using repeated measures to estimate the effects of CIH on patient outcomes. Methods In total, 100 veterans from one VA facility, comprising 11 cohorts, agreed to participate. The VA patient email services (Secure Messaging) were used to manually send links to a 16-item web-based survey stored on a secure web-based survey storage platform (Qualtrics). Each survey included questions about patient outcomes from CIH programs. Each cohort was sent survey links via Secure Messaging (SM) at 6 time points: weeks 1 through 4, week 8, and week 12. Process evaluation interviews were conducted with five primary care providers to assess barriers and facilitators to using the patient-reported outcome survey in usual care. Results This quality improvement project demonstrated the usability of SM and Qualtrics for ePRO collection. However, SM for ePROs was labor intensive for providers. Descriptive statistics on health competence (2-item Perceived Health Competence Scale), physical and mental health (Patient-Reported Outcomes Measurement Information System Global-10), and stress (4-item Perceived Stress Scale) indicated that scores did not significantly change over time. Survey response rates varied (18/100, 18.0%-42/100, 42.0%) across each of the 12 weekly survey periods. In total, 74 of 100 participants provided ≥1 survey, and 90% (66/74) were female. The majority, 62% (33/53) of participants, who reported the use of any CIH modality, reported the use of two or more unique modalities. Primary care providers highlighted specific challenges with SM and offered solutions regarding staff involvement in survey implementation. Conclusions This quality improvement project informs our understanding of the processes currently available for using SM and web-based data platforms to collect ePROs. The study results indicate that although it is possible to use SM and web-based survey platforms for ePROs, automating scheduled administration will be necessary to reduce provider burden. The lack of significant change in ePROs may be due to standard measures taking a biomedical approach to wellness. Future work should focus on identifying ideal ePRO processes that would include standardized, whole-person measures of wellness.

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Section: Discussionsupporting

confidence: 92%

Section: Introductionmentioning

confidence: 99%

Using Electronic Data Collection Platforms to Assess Complementary and Integrative Health Patient-Reported Outcomes: Feasibility Project

Haun¹,

Alman²,

Melillo³

et al. 2020

JMIR Med Inform

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“…Online PROM surveys were shown to achieve a significantly higher response rate, 40%-50%, compared to paper-based versions [33]. The use of mobile devices to communicate with the patients further simplified our study and increased the response rate [34]. The feasibility of pairing mobile devices with wearable technologies that can monitor surrogates of disease activity/severity could further improve our patients' management by highlighting personal problems that are not captured by the traditional parameters of physical signs, laboratory parameters, and imaging findings [31].…”

Section: Discussionmentioning

confidence: 94%

“…Demographics, clinical data, and treatment status were extracted from clinic charts. Based on the definition of "generation" we categorized five age groups (18)(19)(20)(21)(22)(23)(24)(25)(26)(27)(28)(29)(30)(31)(32)(33)(34)(35)(36)(37)(38)(39)(40)(41)(42)(43), 44-55, 56-73, 74 and older) [12]. Untreated patients were defined as patients who had never received any specific GD-treatment (ERT or SRT).…”

Section: Methodsmentioning

confidence: 99%

Patient reported outcome measures in a large cohort of patients with type 1 Gaucher disease

Dinur

Istaiti

Frydman

et al. 2020

Orphanet J Rare Dis

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Background It is now acknowledged that the input of patients in health outcome assessment is vital to understanding the impact of diseases and interventions for those diseases. This study is the first report of patient-reported outcome measures (PROM) in a large cohort of patients with type 1 Gaucher disease (GD1) enabling us to study predictors of the reported outcomes. Method The PROM was sent via a mobile phone survey to 405 adult patients with GD1. Demographics, clinical data, and treatment status were extracted from clinic charts. Age, sex, severity score index (SSI) at presentation and treatment status were used as variables to assess outcomes. Results A total of 192 patients with GD1 (111 females) responded (47.4% response rate), of whom 124 (64.5%) had received GD1-specific therapy. Around 40% of patients reported that GD had restricted their education/job and fun activities and were concerned about being emotional and financial burdens on others. Concerns regarding the risk of bone disease and Parkinson disease were also high (60%). The severity of GD1 (reflected by the need for GD1-specific therapy and a high SSI) was associated with GD1-related restrictions and concerns, fatigue, physical weakness, bone pain, and worry regarding the future. Conclusions The use of GD1 specific PROM highlights personal problems that are not captured by traditional outcome parameters and that need to be addressed to improve health-related quality of life. Validated PROM should be included among the outcome measures in clinical practice and future prospective studies for patients with chronic and rare diseases.

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“…Electronic diaries can collect patient-reported outcomes with more precision and effectiveness than paper diaries [ 16 ], and the increased number of smartphone users allows an opportunity to develop smartphone apps that collect real time patient-reported outcomes [ 17 , 18 ]. Even though pediatric patient-reported outcomes are advocated, parent-reported outcomes may be needed when the child is too young to complete a patient-reported outcome questionnaire [ 19 ].…”

Section: Introductionmentioning

confidence: 99%

Smartphone App to Self-Monitor Nausea During Pediatric Chemotherapy Treatment: User-Centered Design Process

Eliasen

Abildtoft²,

Krogh³

et al. 2020

JMIR Mhealth Uhealth

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Background Nausea and vomiting are common and distressing side effects for children receiving chemotherapy. Limited evidence is available to guide antiemetic recommendations; therefore, prospective and reliable evaluation of antiemetic efficacy is needed. Smartphone apps can be used to effortlessly and precisely collect patient-reported outcomes in real time. Objective Our objective was to develop a smartphone app to monitor nausea and vomiting episodes in pediatric cancer patients aged 0 to 18 years and to test its usability and adherence to its use. Methods We used a user-centered design process and the evolutionary prototype model to develop and evaluate the app. Multidisciplinary group discussions and several rounds of patient feedback and modification were conducted. We translated the validated Pediatric Nausea Assessment Tool to assess nausea severity in children aged 4 to 18 years. The child’s own term for nausea was interactively incorporated in the nausea severity question, with response options expressed as 4 illustrative faces. Parent-reported outcomes were used for children aged 0 to 3 years. Reminders were sent using push notifications in order to ensure high response rates. Children aged 0 to 18 years who were undergoing chemotherapy were recruited from the Department of Pediatric Oncology at Copenhagen University Hospital Rigshospitalet to evaluate the app. Results The app’s most important function was to record nausea severity in children. After assistance from a researcher, children aged 4 to 18 years were able to report their symptoms in the app, and parents were able to report symptoms for their children aged 0 to 3 years. Children (n=20, aged 2.0-17.5 years) and their parents evaluated the app prospectively during a collective total of 60 chemotherapy cycles. They expressed that the app was user-friendly, intuitive, and that the time spent on data entry was fair. The response rates were on average 92%, 93%, and 80% for the day before, the first day of, and the next 3 days after chemotherapy, respectively. Researchers and clinicians were able to obtain an overview of the patient’s chemotherapy dates and responses through a secure and encrypted web-based administrative portal. Data could be downloaded for further analysis. Conclusions The user-friendly app could be used to facilitate future pediatric antiemetic trials and to refine antiemetic treatment during chemotherapy.

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Feasibility and accessibility of electronic patient-reported outcome measures using a smartphone during routine chemotherapy: a pilot study

Abstract: This study suggests that the proposed PRO-SMART is feasible and accessible for assessment of symptomatic AEs in cancer patients receiving chemotherapy for a prospective randomized trial.

Cited by 25 publications

References 26 publications

Using Electronic Data Collection Platforms to Assess Complementary and Integrative Health Patient-Reported Outcomes: Feasibility Project

Using Electronic Data Collection Platforms to Assess Complementary and Integrative Health Patient-Reported Outcomes: Feasibility Project

Patient reported outcome measures in a large cohort of patients with type 1 Gaucher disease

Smartphone App to Self-Monitor Nausea During Pediatric Chemotherapy Treatment: User-Centered Design Process

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