Are on‐line patient portals meeting test result preferences of caregivers of children with cancer? A qualitative exploration

Schultz, Corinna L.; Alderfer, Melissa A.

doi:10.1002/pbc.27306

Cited by 10 publications

(39 citation statements)

References 36 publications

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“…Most of the portals were not addressed to a defined population subgroup, and only some of them were specific to a clinical specialty/condition, such as endocrinology-diabetes [ 8 , 21 , 26 , 34 , 36 , 41 ], primary care [ 33 , 37 , 38 , 40 , 60 ], mental health [ 31 , 35 , 54 ], multiple chronic conditions [ 40 , 55 , 56 ], pulmonology and asthma [ 32 , 44 , 60 ], rheumatology [ 50 , 57 , 59 ], cardiology [ 37 , 44 ], internal medicine [ 40 , 61 ], nephrology [ 30 , 46 ], pregnancy [ 34 ], cancer [ 53 ], and gastroenterology [ 48 ].…”

Section: Resultsmentioning

confidence: 99%

“…The study designs were grouped into six categories according to the characteristics of the articles. Overall, 17 were descriptive quantitative studies [8,[16][17][18][19][20][21][22][23][24][25][26][27][28][29][30][31], two were descriptive mixed-methods studies [32,33], 14 were observational hypothesis testing studies [20,[34][35][36][37][38][39][40][41][42][43][44][45][46], seven were descriptive qualitative studies [47][48][49][50][51][52][53], five were interventional studies, other than randomized controlled trials (RCTs) [54][55][56][57][58], and three were RCTs [59][60][61].…”

Section: Characteristics Of the Included Studiesmentioning

confidence: 99%

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The Impact of Digital Patient Portals on Health Outcomes, System Efficiency, and Patient Attitudes: Updated Systematic Literature Review

Carini¹,

Villani²,

Pezzullo³

et al. 2021

J Med Internet Res

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Background Patient portals are becoming increasingly popular worldwide even though their impact on individual health and health system efficiency is still unclear. Objective The aim of this systematic review was to summarize evidence on the impact of patient portals on health outcomes and health care efficiency, and to examine user characteristics, attitudes, and satisfaction. Methods We searched the PubMed and Web of Science databases for articles published from January 1, 2013, to October 31, 2019. Eligible studies were primary studies reporting on the impact of patient portal adoption in relation to health outcomes, health care efficiency, and patient attitudes and satisfaction. We excluded studies where portals were not accessible for patients and pilot studies, with the exception of articles evaluating patient attitudes. Results Overall, 3456 records were screened, and 47 articles were included. Among them, 11 studies addressed health outcomes reporting positive results, such as better monitoring of health status, improved patient-doctor interaction, and improved quality of care. Fifteen studies evaluated the impact of digital patient portals on the utilization of health services with mixed results. Patient characteristics were described in 32 studies, and it was reported that the utilization rate usually increases with age and female gender. Finally, 30 studies described attitudes and defined the main barriers (concerns about privacy and data security, and lack of time) and facilitators (access to clinical data and laboratory results) to the use of a portal. Conclusions Evidence regarding health outcomes is generally favorable, and patient portals have the potential to enhance the doctor-patient relationship, improve health status awareness, and increase adherence to therapy. It is still unclear whether the use of patient portals improves health service utilization and efficiency.

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Section: Resultsmentioning

confidence: 99%

Section: Characteristics Of the Included Studiesmentioning

confidence: 99%

The Impact of Digital Patient Portals on Health Outcomes, System Efficiency, and Patient Attitudes: Updated Systematic Literature Review

Carini¹,

Villani²,

Pezzullo³

et al. 2021

J Med Internet Res

View full text Add to dashboard Cite

show abstract

“…Better recall or reinforcement of information was reported as a benefit in many studies (7/33, 21%) [24,38,45,[51][52][53][54], as was improved parental knowledge and understanding of their child's health [39,51,53,[55][56][57][58][59]96] and a sense of control [39]. In addition to access to information, parents reported enhanced communication and partnership with providers [11,39,45,51,53,[55][56][57][58].…”

Section: Positive Views and Experiencesmentioning

confidence: 99%

Views, Use, and Experiences of Web-Based Access to Pediatric Electronic Health Records for Children, Adolescents, and Parents: Scoping Review

Hagström¹,

Blease²,

Haage³

et al. 2022

J Med Internet Res

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Background Ongoing efforts worldwide to provide patients with patient-accessible electronic health records (PAEHRs) have led to variability in adolescent and parental access across providers, regions, and countries. There is no compilation of evidence to guide policy decisions in matters such as access age and the extent of parent proxy access. In this paper, we outline our scoping review of different stakeholders’ (including but not limited to end users) views, use, and experiences pertaining to web-based access to electronic health records (EHRs) by children, adolescents, and parents. Objective The aim of this study was to identify, categorize, and summarize knowledge about different stakeholders’ (eg, children and adolescents, parents, health care professionals [HCPs], policy makers, and designers of patient portals or PAEHRs) views, use, and experiences of EHR access for children, adolescents, and parents. Methods A scoping review was conducted according to the Arksey and O’Malley framework. A literature search identified eligible papers that focused on EHR access for children, adolescents, and parents that were published between 2007 and 2021. A number of databases were used to search for literature (PubMed, CINAHL, and PsycINFO). Results The approach resulted in 4817 identified articles and 74 (1.54%) included articles. The papers were predominantly viewpoints based in the United States, and the number of studies on parents was larger than that on adolescents and HCPs combined. First, adolescents and parents without access anticipated low literacy and confidentiality issues; however, adolescents and parents who had accessed their records did not report such concerns. Second, the main issue for HCPs was maintaining adolescent confidentiality. This remained an issue after using PAEHRs for parents, HCPs, and other stakeholders but was not an experienced issue for adolescents. Third, the viewpoints of other stakeholders provided a number of suggestions to mitigate issues. Finally, education is needed for adolescents, parents, and HCPs. Conclusions There is limited research on pediatric PAEHRs, particularly outside the United States, and on adolescents’ experiences with web-based access to their records. These findings could inform the design and implementation of future regulations regarding access to PAEHRs. Further examination is warranted on the experiences of adolescents, parents, and HCPs to improve usability and utility, inform universal principles reducing the current arbitrariness in the child’s age for own and parental access to EHRs among providers worldwide, and ensure that portals are equipped to safely and appropriately manage a wide variety of patient circumstances. International Registered Report Identifier (IRRID) RR2-10.2196/36158

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“…Schultz and Alderfer 13 conducted one-on-one semistructured interviews of 19 caregivers of children with cancer. Caregivers recognized advantages of portal use including getting results “fast,” being able to visualize trends in results, “keeping a record,” and not interfering with clinic flow.…”

Section: Resultsmentioning

confidence: 99%

“…Despite the obvious benefits of online portal use, two of the studies found disadvantages of the internet-based technology, and these included patient anxiety, patients not understanding their results, and patients learning results prior to disclosure by their care teams 12, 13 . All of these disadvantages revolve around patient anxiety, as patients not understanding their results and learning them prior to disclosure by their care teams can both lead to patient anxiety by leaving the patients in limbo for a certain length of time.…”

Section: Discussionmentioning

confidence: 99%

A Review of Web Portal Use by Oncology Patients

Coughlin

Caplan

Young

2018

J Cancer Treat & Diagnosis

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Background: Patient portals and other Internet-based technologies have been increasingly used to improve cancer care coordination. Patient portals may introduce special considerations in oncology populations where longitudinal outpatient care is often more intensive than in most other specialties. Methods: This article, which is based upon bibliographic searches in PubMed, reviews the literature on web portal use by cancer patients. Articles published in English from 2000 to August 2018 were identified using the following MeSH search terms and Boolean algebra commands: web portal AND cancer. Information obtained from bibliographic searches (title and topic of article, information in abstract, and keywords) was used to determine whether to retain each article identified in this way. Results: A total of 263 article citations were identified in the bibliographic searches. Of these, 10 met the eligibility criteria. A variety of study designs were used including focus groups, usability testing, in-person interviews, questionnaire surveys, retrospective cohort, and non-randomized trial. Cancer patients had reached modest levels of portal use. Increased portal use has been associated with younger age, white race, and higher socioeconomic status. Most cancer patients used portals to look up testing results and provide notes, but had difficulty in interpreting the results appropriately. Conclusions: Our study adds to the growing evidence that patient portals play a significant role in promoting self-management in cancer survivors. Additional studies are needed to determine factors influencing portal use, so effective interventions can be developed to enhance portal use.

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Are on‐line patient portals meeting test result preferences of caregivers of children with cancer? A qualitative exploration

Cited by 10 publications

References 36 publications

The Impact of Digital Patient Portals on Health Outcomes, System Efficiency, and Patient Attitudes: Updated Systematic Literature Review

The Impact of Digital Patient Portals on Health Outcomes, System Efficiency, and Patient Attitudes: Updated Systematic Literature Review

Views, Use, and Experiences of Web-Based Access to Pediatric Electronic Health Records for Children, Adolescents, and Parents: Scoping Review

A Review of Web Portal Use by Oncology Patients

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