Quality assessment of cancer patient education materials: the current state of systemic therapy patient education in fourteen cancer centres across Ontario, Canada

Papadakos, Janet; Giannopoulos, Eleni; McBain, Sarah; Forbes, Leta; Jain, Priyanka; Samoil, Diana; J, Wang; Zwicker, Victoria; Fox, Colleen; Moody, Lesley; McLeod, Robin S.

doi:10.1007/s00520-020-05859-2

Cited by 15 publications

(8 citation statements)

References 26 publications

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“…This is likely due to the brevity of the pins content, which mostly focused on the symptoms associated with various urological conditions. Despite these findings, prior literature has found that well-informed patients have better health-related outcomes and are better able to identify and seek help for their symptoms [ 14 ]. Comprehensive patient educational materials that describe actionable steps may help patients determine urgency in seeking medical care [ 14 ].…”

Section: Discussionmentioning

confidence: 99%

“…Despite these findings, prior literature has found that well-informed patients have better health-related outcomes and are better able to identify and seek help for their symptoms [ 14 ]. Comprehensive patient educational materials that describe actionable steps may help patients determine urgency in seeking medical care [ 14 ]. Ultimately, generating patient-centric information that enhances the ability to comprehend their disease will improve shared decision-making among patients and providers [ 15 ].…”

Section: Discussionmentioning

confidence: 99%

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Exploring Urological Malignancies on Pinterest: Content Analysis

Herbert¹,

Hassan²,

Malik³

et al. 2022

JMIR Cancer

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Background Pinterest is a visually oriented social media platform with over 250 million monthly users. Previous studies have found misinformative content on genitourinary malignancies to be broadly disseminated on YouTube; however, no study has assessed the quality of this content on Pinterest. Objective Our objective was to evaluate the quality, understandability, and actionability of genitourinary malignancy content on Pinterest. Methods We examined 540 Pinterest posts or pins, using the following search terms: “bladder cancer,” “kidney cancer,” “prostate cancer,” and “testicular cancer.” The pins were limited to English language and topic-specific content, resulting in the following exclusions: bladder (n=88), kidney (n=4), prostate (n=79), and testicular cancer (n=10), leaving 359 pins as the final analytic sample. Pinterest pins were classified based on publisher and perceived race or ethnicity. Content was assessed using 2 validated grading systems: DISCERN quality criteria and the Patient Education Materials Assessment Tool. The presence of misinformation was evaluated using a published Likert scale ranging from 1=none to 5=high. Results Overall, 359 pins with a total of 8507 repins were evaluated. The primary publisher of genitourinary malignancy pins were health and wellness groups (n=162, 45%). Across all genitourinary malignancy pins with people, only 3% (n=7) were perceived as Black. Additionally, Asian (n=2, 1%) and Latinx (n=1, 0.5%) individuals were underrepresented in all pins. Nearly 75% (n=298) of the pins had moderate- to poor-quality information. Misinformative content was apparent in 4%-26% of all genitourinary cancer pins. Understandability and actionability were poor in 55% (n=198) and 100% (n=359) of the pins, respectively. Conclusions On Pinterest, the majority of the urological oncology patient-centric content is of low quality and lacks diversity. This widely used, yet unregulated platform has the ability to influence consumers’ health knowledge and decision-making. Ultimately, this can lead to consumers making suboptimal medical decisions. Moreover, our findings demonstrate underrepresentation across many racial and ethnic groups. Efforts should be made to ensure the dissemination of diverse, high-quality, and accurate health care information to the millions of users on Pinterest and other social media platforms.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Exploring Urological Malignancies on Pinterest: Content Analysis

Herbert¹,

Hassan²,

Malik³

et al. 2022

JMIR Cancer

View full text Add to dashboard Cite

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“…The panel experts agreed that the videos should be seven minutes at most to spark interest, maintain focus and attention and not be time-consuming [12]. The terms used were suitable for laymen while maintaining the real health context as plain language, a patient-centered approach for clear communication, is preferred by all health literacy levels [15].…”

Section: Discussionmentioning

confidence: 99%

Development and Evaluation of Video-Based Educational Materials for Nutritional Management of Cancer in Children Among Healthcare Professionals and Caregivers

Razalli

Alias

Mohammad

et al. 2021

Preprint

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Background A good audio-visual educational material for caregivers on nutrition management of pediatric oncology patients can improve treatment effectiveness, recovery rate, and nutritional status of patients. This study aimed to develop and evaluate a series of video-based educational materials for nutritional management of pediatric oncology patients among healthcare professionals and caregivers.Methods The development of the video series began with subtopic selection and content refinement based on a printed booklet project previously published by the groups of five experts in dietetics and oncology medicine and five caregivers of pediatric cancer patients. 10 healthcare professionals (medical doctors and dietitians with over 5 years of working experience) and 15 caregivers then evaluated the video series for acceptability and relevance using the Malay version of the Patient Education Materials Assessment Tools for Audio-Visual materials (PEMAT-AV). Sets of understandability and actionability statements were given a score of 0 (disagree) or 1 (agree), and the overall percentage was calculated.ResultFour main topics were selected from the booklet and adopted into 5 video series ranging from 3 to 8 minutes in length developed in the Malay language entitled (i) Introduction to Cancer and the Treatment, (ii) The Side Effects of Cancer Treatment and Management (Part 1), (iii) The Side Effects of Cancer Treatment and Management (Part 2), (iv) Nutrition Management in Children with Cancer, and (v) You Ask, We Answer. The average understandability and actionability scores rated by the healthcare professionals were 98.6%% and 98.7%respectively. Whereas the caregivers’ average score for understandability was 99.5% and 99.6% for actionability.ConclusionsThe findings revealed that a high-quality video series was successfully developed and rated as highly understandable and actionable by both healthcare professionals and caregivers. This reflects positive acceptance and relevance of the nutritional management educational videos by both groups who manage and care for pediatric cancer patients. Trial RegistrationCentre for Research and Instrumentation Management, Research Ethics Committee of The National University of Malaysia; Ref. No. UKM/PPI/111/8/JEP-2021-266

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“…This was the case for cancer prognostic information, including survival statistics, metastasis, and quality of life. Although cancer patients and families actively seek information on survival statistics and disease progression [46,47], the vast majority of patient education materials have reading grade levels well above the recommended targets [48][49][50]. Furthermore, cancer patient education materials frequently fall below the acceptable standards for understandability and actionability [48,50].…”

Section: Discussionmentioning

confidence: 99%

“…Although cancer patients and families actively seek information on survival statistics and disease progression [46,47], the vast majority of patient education materials have reading grade levels well above the recommended targets [48][49][50]. Furthermore, cancer patient education materials frequently fall below the acceptable standards for understandability and actionability [48,50]. This can have significant implications for cancer patients [51], including confusion, inability to be involved in treatment decisions, issues related to goal planning and prioritization, or decline in self-management behaviors [52,53].…”

Section: Discussionmentioning

confidence: 99%

Identifying gaps in consumer health library collections: a retrospective review

Giannopoulos

Snow

Manley

et al. 2021

jmla

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Background: The objective of this study was to determine if search request forms, which are used when a patron’s request for information cannot be fulfilled at the time of contact with the library team, can be used to identify gaps in consumer health library collections.Case Presentation: Search request forms were collected from 2013 to 2020 and analyzed independently by two reviewers. Search request forms were included if they were complete and contained a record of how the request was fulfilled. Descriptive statistics were used to summarize patron characteristics. Search request forms were iteratively coded to identify themes in the data and determine if resources provided to patrons could be found within the library collection. The study team subsequently reviewed search request forms to determine reasons for identified gaps. Two hundred and forty-nine search request forms were analyzed. Six main content themes were identified: 1) understanding the cancer diagnosis, 2) cancer treatments, 3) understanding disease prognosis, 4) support during and after treatment, 5) natural health products and therapeutic effects in oncology, and 6) research literature. The majority of patrons were patients (53%). Over half (60%) of the submitted search request forms reflected collection gaps, and many (16%) contained queries for information about rare cancer diagnoses. The main reason that queries could not be satisfied was that there was limited consumer health information on the requested topics (53%).Conclusions: Search request forms are a useful resource for assessing gaps in consumer health library collections.

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Quality assessment of cancer patient education materials: the current state of systemic therapy patient education in fourteen cancer centres across Ontario, Canada

Cited by 15 publications

References 26 publications

Exploring Urological Malignancies on Pinterest: Content Analysis

Exploring Urological Malignancies on Pinterest: Content Analysis

Development and Evaluation of Video-Based Educational Materials for Nutritional Management of Cancer in Children Among Healthcare Professionals and Caregivers

Identifying gaps in consumer health library collections: a retrospective review

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