An evaluation of the suitability,readability, and quality of online resources for the self-management of depression

Objective

To evaluate online depression self-management (SM) resources based on their readability, suitability, and quality to determine their appropriateness for use by patients.

Evaluation of the quality and readability of online information about breast cancer in China

ObjectiveThis study aimed at evaluating the quality and readability of online information about breast cancer written in Chinese.MethodsAn Internet search was conducted for “breast cancer” in Chinese using the Baidu search engine. Website quality was evaluated using the DISCERN instrument, and readability was evaluated using the Chinese Readability Index Explorer (CRIE). Higher DISCERN score indicated higher quality of websites, while higher CRIE score indicated lower readability of the content of the websites. We also investigated the effects of website producer category, and the associations of search engine ranking with DISCERN and CRIE scores.ResultsA total of 49 websites were included. The mean overall DISCERN score was 50.27 ± 4.14, and the mean CRIE score was 6.78 ± 0.16. Websites produced by non-profit organizations had the highest overall DISCERN scores, while those produced by private individuals had the lowest CRIE scores. Search engine ranking had no significant correlation with website quality or readability.ConclusionsThe quality and readability of breast cancer websites in Chinese were not satisfactory, and they varied among different website producer categories.Practice implicationsWebsite producers should seek to provide more accurate, comprehensive, and easy-to-understand information to better meet the needs of breast cancer patients. In addition, search engines should revise algorithms to promote websites with higher quality and accessibility.     

Assessing an educational booklet for promotion of healthy lifestyles in sedentary adults with cardiometabolic risk factors

Objectives1) To evaluate and improve the suitability and readability of an educational booklet designed for use in an intervention aimed at promoting healthy lifestyles as a way to manage cardiometabolic risk factors in adults with low levels of physical activity and 2) to check its acceptability to real end users.MethodsA 7-phase methodology was used. The evaluation committee (9 experts, 6 potential end users) scored the booklet using the Suitability Assessment of Materials (SAM) and health education material (HEM) questionnaires on two occasions (original and revised version). Acceptability was also assessed by 75 real end users after a lifestyle intervention.ResultsThe SAM and HEM scores of the revised booklet were respectively 10% (SD = 9%) and 10% (SD = 7%) higher than the original booklet scores. The revised version attained “superior” scoring in all questionnaires: SAM, 87% (SD = 8%); HEM, 3.5 (SD = 0.4) out of 4; Acceptability, 3.7 (SD = 0.4) out of 4.ConclusionsThe suitability and readability of an educational booklet—to promote a healthy lifestyle—were improved following a systematic peer-review evaluation prior to its use in an intervention.Practice implicationsImproving the suitability and readability of educational resources can have a positive impact on patient knowledge and awareness, and hence on intervention effectiveness.     

Quality of online information for the general public on COVID-19

ObjectivesTo analyse the quality of information included in websites aimed at the public on COVID-19.MethodsYahoo!, Google and Bing search engines were browsed using selected keywords on COVID-19. The first 100 websites from each search engine for each keyword were evaluated. Validated tools were used to assess readability [Flesch Reading Ease Score (FRES)], usability and reliability (LIDA tool) and quality (DISCERN instrument). Non-parametric tests were used for statistical analyses.ResultsEighty-four eligible sites were analysed. The median FRES score was 54.2 (range: 23.2−73.5). The median LIDA usability and reliability scores were 46 (range: 18−54) and 37(range:14−51), respectively. A low (<50 %) overall LIDA score was recorded for 30.9 % (n = 26) of the websites. The median DISCERN score was 49.5 (range: 21–77). The DISCERN score of ≤50 % was found in 45 (53.6 %) websites. The DISCERN score was significantly associated with LIDA usability and reliability scores (p < 0.001) and the FRES score (p = 0.024).ConclusionThe majority of websites on COVID-19 for the public had moderate to low scores with regards to readability, usability, reliability and quality.Practice ImplicationsPrompt strategies should be implemented to standardize online health information on COVID-19 during this pandemic to ensure the general public has access to good quality reliable information.     

Perceived cancer-related pain and fatigue,information needs,and fear of cancer recurrence among adult survivors of childhood cancer

ObjectivePain and fatigue are under-researched late effects of childhood cancer and its treatment, and may be interpreted by survivors as indicating cancer recurrence. Moreover, unmet information needs for managing pain and fatigue may be related to fear of cancer recurrence. We investigated the complex relationships between perceived cancer-related pain and fatigue, unmet information needs for managing pain and fatigue, and fear of cancer recurrence.MethodsWe surveyed 404 adult survivors of any form of childhood cancer (M = 16.82 years since treatment completion).ResultsMany survivors reported perceived cancer-related pain (28.7%) and fatigue (40.3%), and anticipated future pain (19.3%) and fatigue (26.2%). These symptomologies were all related to unmet information needs for managing pain (18.8%) and fatigue (32.2%; all p’s<.001). Survivors reporting unmet information needs for managing pain (B = .48, 95% CI = 0.19-0.76, p = .001) and fatigue (B = .32, 95% CI = 0.06-0.52, p = .015) reported higher fear of cancer recurrence than survivors reporting no information needs.ConclusionSurvivors often have unmet information needs for managing pain and fatigue, and these unmet needs are related to fear of cancer recurrence.Practice ImplicationsLong-term follow-up clinics should assess pain and fatigue. Information provision about pain and fatigue may be an important tool to help manage fear of cancer recurrence.     

Suitability and readability assessment of educational print resources related to physical activity: implications and recommendations for practice

OBJECTIVE: The primary objective of this study was to assess the suitability and readability level of publicly available educational print resources related to physical activity (PA). METHODS: Educational print resources related to PA (n=66) were requested from organizations (e.g., professional, commercial, government, and educational). The suitability assessment of materials (SAM) and the simple measure of gobbledygook (SMOG) readability measure were used to evaluate the suitability and readability of the PA resources. RESULTS: Of the 66 PA resources, suitability scores were superior in only 10 resources (15%), adequate in 36 resources (55%), and inadequate/not suitable in 20 resources (30%). The average reading grade level for the PA resources was a 10th grade level (S.D.=1.82; Rg=5th grade to 15th grade). Only 56.5% (n=35) of PA resources depicted a primary PA recommendation that was consistent with the public health recommendation for PA. CONCLUSION: Results indicate that the majority of educational print resources related to PA have poor readability indices and inadequate to adequate suitability. PRACTICE IMPLICATIONS: Health educators developing educational print resources related to PA must ensure these resources conform to the highest suitability standards. This includes developing resources that a) contain information consistent with current public health recommendations, and b) can be utilized by all individuals regardless of health literacy status.     

Patient information leaflets for prostate cancer: which leaflets should healthcare professionals recommend?

This study evaluated 31 patient information leaflets (PILs) discussing treatment options for prostate cancer. In stage one, the authors evaluated the leaflets' quality, readability and suitability using objective measures: the DISCERN instrument; Flesch formula; and the Suitability Assessment of Materials (SAM) instrument, respectively. Although the leaflets varied in terms of their scores on each measure, it was possible to identify the best five leaflets across the three conditions. In stage two, eight men with prostate cancer took part in a focus group discussion or individual interview to outline their views regarding a number of leaflets, including the best five booklets or leaflets identified in stage one of the study. The interviews were audiotaped and analysed using a template analysis. Patients were able to discriminate between the best five leaflets or booklets and identify their preferred booklets. These were the booklets: "Understanding cancer of the prostate" by CancerBACUP, "Prostate cancer: everything you need to know" by the Prostate Cancer Charity and "The treatment of prostate cancer. Questions and answers" by the Covent Garden Cancer Research Trust. On the basis of their high ratings for the objective measures and patients' views, healthcare professionals are advised to recommend these three booklets to men with prostate cancer who want written information about the disease. However, randomised controlled trials are needed to examine the impact of these booklets on the psychosocial outcomes of men with prostate cancer.     

Survey of quality,readability, and social reach of websites on osteosarcoma in adolescents

Objective

Little is known about Internet resources for adolescent patients. This study assessed the quality, readability, and social reach of websites on an illustrative adolescent cancer diagnosis, osteosarcoma.

Methods

The top 50 results from four queries in two search engines were screened. Quality and readability were determined using standard DISCERN tool, Flesch Reading Ease and Flesch–Kinkaid Grade. Social reach was gauged by social networking links, global website traffic, and a pilot adolescent-specificity measure.

Results

Of 400 websites assessed, 56 (14%) met inclusion criteria. Websites’ mean quality was fair (49.8 on 75-point scale; range 31.0–66.0, poor to excellent); 86% failed readability standards (Grade > 8); 75% offered at least one social networking link; and 34% offered site-specific social media. More than 60% received over 50,000 visits in the past month. Only 12.5% included adolescent-specific content. Of the 10 websites ranked highest for quality, only one achieved both readability targets and adolescent-specific content.

Conclusions

Although some patient-oriented websites on osteosarcoma are of acceptable quality, most failed readability targets, and few appeared to address adolescents.

Practice implications

Better awareness of Internet health resources and social media for adolescents with cancer is needed to address gaps, promote health literacy and facilitate patient–provider communication.     

Osteotomy around the knee: Assessment of quality,content and readability of online information

BackgroundAs knee osteotomy surgery becomes increasingly accessible, more patients may turn to the Internet for information. This study examined the source, quality, content and readability of online information regarding osteotomy around the knee.MethodsThe first 70 websites returned by the top four search engines were identified using the key words: “knee osteotomy” and “high tibial osteotomy.” The websites were categorised by type and assessed using the DISCERN score, Journal of the American Medical Association (JAMA) benchmark criteria and a novel Knee Osteotomy-Specific Score (KOSS). The presence of the Health On the Net (HON) code accreditation seal was noted. Readability of each website was assessed using eight readability formulae. The mean reading grade level (RGL) was compared to the 6th and 8th grade reading levels. The mean RGL of each category was also compared.ResultsOf the 45 unique websites analysed, the majority were Physician (33%) and Journal websites (31%). The mean DISCERN score was 36.7 (±8.9) which is classified as ‘poor.’ The mean JAMA benchmark criteria score was 2.04 (±1.5) and Physician websites were most likely to be scored zero. The mean KOSS was 15.4 (±5.7). The highest scoring website was a Commercial site but, overall, Journal category sites provided the best quality information. Websites that bore the HONcode seal obtained higher DISCERN, JAMA benchmark criteria and Knee Osteotomy - Specific Scores.The cumulative mean RGL was 13.2 (±2.2) which exceeded the 6th grade level by an average of 7.2 grade levels and the 8th grade level by an average of 5.2 grade levels. No website (0%) was written at or below either the 6th or the 8th grade reading levels. The mean Flesch Reading Ease Score of all websites was 41.13 (±14.7) which is classified as ‘difficult.’ Journal websites had the highest RGL.ConclusionThe information available online regarding osteotomy around the knee varies tremendously in quality and completeness. Physician sites predominate, but these were among the lowest scoring of all websites. Even where high quality information is available, it is set at too high a level to be easily understood.Level of evidenceSurvey of materials – Internet.     

Assessment of the quality and content of website health information about herbal remedies for menopausal symptoms

ObjectiveTo assess the quality, readability and coverage of website information about herbal remedies for menopausal symptoms.Study designA purposive sample of commercial and non-commercial websites was assessed for quality (DISCERN), readability (SMOG) and information coverage.Main outcome measuresNon-parametric and parametric tests were used to explain the variability of these factors across types of websites and to assess associations between website quality and information coverage.Results39 sites were assessed. Median quality and information coverage scores were 44/80 and 11/30 respectively. The median readability score was 18.7, similar to UK broadsheets. Commercial websites scored significantly lower on quality (p = 0.014), but there were no statistical differences for information coverage or readability. There was a significant positive correlation between information quality and coverage scores irrespective of website provider (r = 0.69, p < 0.001, n = 39).ConclusionOverall website quality and information coverage are poor and the required reading level high.     

Unmet needs for information and psychosocial support in relation to quality of life and emotional distress: A comparison between gynecological and breast cancer patients

ObjectiveWe compared gynecological and breast cancer patients regarding their needs for information and psychosocial support, quality of life (QoL), and emotional distress and the relationship among these constructs.MethodsIn a multicenter, cross-sectional study in Germany, we evaluated 1214 female cancer patients (317 with gynecological cancer, 897 with breast cancer). We obtained self-reports of unmet needs, using a self-developed measure. We measured QoL with the EORTC QLQ-C30, symptoms of depression with the Patient Health Questionnaire (PHQ-9), and symptoms of anxiety with the Generalized Anxiety Disorder Scale (GAD-7).ResultsCompared to breast cancer patients, gynecological cancer patients felt less informed about several aspects of their disease, particularly regarding psychological support (p < 0.001), tended to have more unmet information needs, and reported lower QoL levels. Lower emotional functioning, but higher physical functioning were independent correlates of the level of unmet information needs. Depressive symptoms and higher physical functioning (only in breast cancer) were independent correlates of higher needs for psychosocial support.ConclusionCompared to breast cancer, gynecological cancer patients were less satisfied with the information received and reported lower levels of QoL.Practice implicationsBoth clinicians and policy makers should take efforts to address the higher needs of gynecological cancer patients.     

Trajectories of mental and physical functioning among spouse caregivers of cancer survivors over the first five years following the diagnosis

ObjectiveIdentify the trajectories of physical and mental functioning among spouse caregivers of patients with cancer over the first five years post-diagnosis and variables associated with low or deteriorating functioning.MethodsCaregivers completed a survey at 6 months and 1, 2, 3.5, and 5 years post-patient diagnosis, including the SF-12 for quality of life (QOL). SF-12 Mental Component Summary (MCS, n = 299) and Physical Component Summary (PCS, n = 300) scores were analyzed using SAS.ResultsFive trajectories for PCS were identified, the top three were: (a) high PCS (53.0%); (b) steady decline in PCS (17.0%); and (c) steady increase, but remaining below population norm (16.7%). Five trajectories for MCS were also identified, the top two being: (a) high MCS (45.8%) and (b) MCS comparable to population norm (27.8%). Variables associated with low or deteriorating QOL included depression, social support, coping, burden, and/or unmet needs.ConclusionsThis is the first study to document spouse caregivers’ QOL over the first five years post-patient diagnosis. Although many participants experienced high functioning, almost a third reported low or deteriorating mental or physical functioning.Practice implicationsVariables associated with low or deteriorating mental and physical functioning can be targeted in future interventions.     

Dutch health websites and their ability to inform people with low health literacy

ObjectiveTo evaluate whether Dutch online health information (OHI) generally reflects message elements that support information processing and understanding among people with low health literacy.MethodsWe content-analyzed one hundred Dutch webpages about Ebola, fibromyalgia, ALS, losing weight, borderline personality disorder, hemorrhoids, ADD, bladder infection, shingles, and chicken pox. The codebook covered the following domains: images and videos, readability level, Suitability Assessment of Materials (SAM), advertising, interactive features, and reliability cues.ResultsThirty-seven webpages contained informative images that visualized the text. Twelve webpages incorporated videos, six of which were animations. Readability varied widely, but 79.2% of the texts exceeded the recommended B1 level. Half of the webpages had inadequate SAM scores; five were classified as superior. Interactive features were infrequently used. Many webpages included only a few elements that help users evaluate the reliability of OHI. Four presented a quality label.ConclusionOver a wide range of health-related topics, Dutch OHI does not generally contain message elements that improve information processing among people with low health literacy.Practice implicationsCommunication professionals should make better use of digital message features. Videos, narration, and interactivity are scarcely used but can be valuable for people with low health literacy.     

Living with mesothelioma: A systematic review of patient and caregiver psychosocial support needs

ObjectivePractice guidelines emphasize the importance of investigating psychosocial distress in mesothelioma patients and family caregivers. We aimed to synthesize research on the psychosocial support needs of mesothelioma patients and their family caregivers.MethodsWe conducted a systematic review with a narrative synthesis and quality assessment. The review process adhered to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines.ResultsMEDLINE, EMBASE, Scopus, PsychArticles, and PsycINFO were searched until December 2020 and 37 studies in English met inclusion criteria. Most (n = 24) included mesothelioma patients as a very small proportion of their cancer samples. A narrative synthesis was conducted on the 13 studies including only mesothelioma patients (n = 297) and/or caregivers (n = 82). Patients and caregivers want improvements in the diagnosis delivery and access to palliative care. Patients want emotional support, patient-centered treatment, improved information about illness progression and death, and to meet others with mesothelioma. Caregivers want one-on-one practical and emotional support. Study quality varied.ConclusionsFew studies focus on the psychosocial support needs relevant to mesothelioma. Mesothelioma patients and family caregivers highlight targeted psychosocial care as an unmet need.Practice ImplicationsEfforts are required to design and test psychosocial interventions for this vulnerable and overlooked group.Protocol RegistrationPROSPERO (registration number CRD42020167852).     

Triadic agreement about advanced cancer treatment decisions: Perceptions among patients,families, and oncologists

ObjectivesWhen patients make cancer treatment decisions, they consider the needs and preferences of family caregivers and clinicians. We examined how much all three triad members agreed about goals of treatment and caregivers’ influence on decision-making.MethodsWe surveyed 70 triads of patients, caregivers, and oncologists who had recently made an advanced cancer treatment decision. We assessed each triad member’s perception of the goal of treatment and the caregiver’s influence on the decision. Participants also completed scales related to decisional conflict, satisfaction, and regret.ResultsIn only 28/70 triads (40%), all three agreed on the goal of treatment with the most common goal being to live longer (n = 22). Whereas patients and caregivers tended to think the goal was to cure or live longer, oncologists were less optimistic. In only 22 triads (31%), all three agreed on how much influence the caregiver had on decision-making. Oncologists tended to underestimate caregiver influence. Patients and caregivers had low decisional conflict (M=15.40, SD=4.51; M=17.09, SD=6.34, respectively).ConclusionsAdvanced cancer treatment decision-making occurs amid incomplete understanding among patients, caregivers, and oncologists.Practice implicationsConfirming agreement about goals of care and influence on treatment decision-making may increase the likelihood of goal-concordant care throughout the illness trajectory.     

Development,validation and evaluation of a patient information booklet for rectal cancer survivors with a stoma: A three-step approach

ObjectiveQuantitatively measure the degree of patient satisfaction and perceived acquired knowledge through the development of a patient information booklet for rectal cancer survivors with a stoma, according to a novel three-step approach.MethodsThe study included a systematic literature review to identify relevant information for the booklet, which was validated by experts based on relevance, clarity and essentiality. It underwent testing on quality, readability, and layout and design and was quantitatively evaluated by rectal cancer survivors with a stoma.ResultsIn total, 145 articles were used for the development of the booklet. It scored 91% for relevance according to 17 experts, 70% for readability, 75.63% for quality and 23 out of 32 for design. The mean score of patient satisfaction was 8.03 out of 10. All 20 patients found the booklet ‘useful’ and 95% felt better informed.ConclusionsThe booklet scored high for patient satisfaction and increased perceived acquired information. It ensured satisfactory levels of quality, readability, and layout and design.Practice implicationsThis study offers a novel three-step approach for development of informational tools for cancer survivors, assuring that a variety of newly created written patient materials would be of increased quality and relevance to any target population.     

Online resources for family caregivers of cognitively competent patients: A review of user-driven reputable health website content on caregiver communication with health professionals

ObjectiveMost patients want their family involved in consultations and decisions, however some family caregivers report feeling overwhelmed and unsure of their role. As caregivers are increasingly looking to medical websites for guidance, this study aimed to review reputable web-resources available to inform family caregivers on how to be involved in medical consultations and decisions.MethodsGoogle searches were performed using lay search strings, to imitate how a cancer caregiver may locate information. Relevant webpages were included if they were directed at caregivers and from a reputable health organisation. Qualitative content analyses were performed on the included webpages.Results22 webpages were included and 8 were directed at caregivers of cancer patients. Six key categories of information were identified: preparing for consultations, helping during consultations, advocating for the patient, decision-making, communicating in hospital settings, and communicating with family and friends.ConclusionA range of online resources were found to guide family caregivers, particularly cancer caregivers, on involvement in consultations. However, few provided information to caregivers on complex situations such as treatment decision-making, advocating for patient’s needs, and communicating in a hospital setting.Practice implicationsClinicians can actively refer family caregivers to online resources that support caregiver communication in medical settings.     

Long-term effectiveness of an E-based survivorship care plan for breast cancer survivors: A quasi-experimental study

ObjectiveThe purpose of this study was to evaluate the effect of a web-based survivorship care plan (SCP) computerized application (APP): (SCP-A) on women’s unmet needs, fear of recurrence, symptom distress, anxiety, depression, and quality of life (QoL).MethodsWomen diagnosed with breast cancer, who had completed their primary treatment but less than 5 years without a sign of recurrence (N = 165) were randomized to a SCP-A or a control group. Self-reported questionnaires were completed by the both groups at baseline (T0), 5 weeks (T1), 3 months (T2), 6 months (T3), and 12 months (T4).ResultsControlling for relevant covariates, mixed effect model analyses revealed a significant decrease in women in the SCP-A group compared to the control group for total unmet needs since T3 (p < .004) and fear of recurrence since T4 (p = .02). Women in the SCP-A group also reported significant improvements in QoL at T4 (p < .001) relative to those in the control group.ConclusionProviding SCP using an information website application for women with breast cancer can decrease unmet needs, fear of recurrence, and improve quality of life during short-term and long-term use.Practice ImplicationsWeb-based information that provides survivorship care plans for breast cancer survivors are beneficial.