Do cancer-specific websites meet patient's information needs?

Objective

To evaluate commonly used cancer websites’ information provision, we developed and applied an Information Comprehensiveness Tool to breast and prostate cancer websites.

Methods

We first collated questions from a systematic literature review on patient information needs. We then classified the questions in terms of spectrum of care, theme, and nature of question. “Breast cancer” and “prostate cancer” were typed into Google, and websites listed on the first page of results were selected. Two researchers, blind to each others’ scores, assessed the same websites using the coding system. Each question was scored on a 3-point scale as not (0%), partially (50%) and fully (100%) answered by two researchers. Average scores were calculated across all questions. Inter-rater reliability was assessed.

Results

We identified 79 general, 5 breast, and 5 prostate cancer questions. Inter-rater reliability was good, with an intraclass coefficient of 0.756 (95% CIs 0.729–0.781). 17 questions were not answered thoroughly by any website. Questions about “future planning”, “monitoring”, and “decision-making” were discussed least. Biomedical questions scored highest.

Conclusions

More comprehensive information needs to be provided on breast and prostate cancer websites.

Practice implications

This ICT can improve cancer information online and enable patients to engage more actively regarding their information needs.     

From patient education to patient engagement: Implications for the field of patient education

Objective

Advances in health care require that individuals participate knowledgeably and actively in their health care to realize its full benefit. Implications of these changes for the behavior of individuals and for the practice of patient education are described.

Methods

An “engagement behavior framework” (EBF) was compiled from literature reviews and key informant interviews. To assess the focus of research and interventions on the identified engagement behaviors, the EBF was used to code scientific sessions in professional conferences relevant to patient education in the US in 2006–2007.

Results

Many specific behaviors constitute engagement. Professional conferences on patient education show only modest attention to the full range of relevant behaviors.

Conclusion

People must make informed choices about insurance and clinicians, coordinate communications among providers and manage complex treatments on their own. Not doing so risks preventable illness, suboptimal outcomes and wasted resources.

Practice Implications

Increased responsibilities of individuals, sick and well, to find and actively participate in high quality health care provides an opportunity for patient education researchers and clinicians to improve health outcomes by developing innovative strategies to support all individuals to effectively participate in their care to the extent possible.     

The role of digital patient education in maternal health: A systematic review

ObjectiveTo assess the recent trends, acceptability, and effectiveness of digital maternal patient education through summarizing the literature.MethodsArticles published in 2010–2020 on patient education, digital tools, and maternal health were searched on PubMed. Abstract and full texts were reviewed to identify eligible studies and extract key information.ResultsDigital patient education studies covered various topics throughout pregnancy, with the greatest number of studies targeting the prenatal period. Among the 55 studies, 38 (69%) reported significant patient outcomes, with the main benefits of increased knowledge (83.3%), emotional benefits (73.7%), and behavioral changes (60.6%). The number of studies per year increased steadily over the past decade, with frequently utilized formats of texts with images (40%), SMS (30.9%), and videos (25.5%). Video produced the highest rate of positive patient outcomes; however, no statistical significance was found.ConclusionOur study presented evidence supporting the high effectiveness and prevalence of digital tools in maternal patient education, and analyzed the content, platforms, and formats utilized by digital tools of the past decade.Practice implicationsDigital tools are effective and feasible in conducting maternal patient education. No specific patient education format is found to be superior in improving patient’s health outcomes.     

A case for clarity in the writing of health statements

OBJECTIVE: While effectively written health-related materials can facilitate self-care, using negative wording may backfire, as patients may forget negations and remember the opposite of intended information. The present study attempts to determine if older readers are particularly susceptible to misremembering negatively worded health-related statements. METHODS: Younger and older adults read positively and negatively worded statements and were later tested for memory of the exact statements, statements opposite in meaning due to the addition or deletion of a negation, and entirely new statements. RESULTS: For intact statements, both groups recognized more positive than negative statements. When statements reversed meanings, younger adults were more likely to accurately recognize items that changed from negative to positive than were older adults, who were more likely to incorrectly endorse changed items as intact when items began negative and became positive than the reverse. CONCLUSION: The inclusion of negations, often used in attention-grabbing techniques such as myth-busting, can backfire, especially among older audiences who are less likely to accurately remember negatively worded items and especially likely to endorse their positive counterparts. PRACTICE IMPLICATIONS: Designers of healthcare materials should avoid using negatively worded statements, which may be misremembered by vulnerable populations, in favor of positive wording.     

Disparities in patient reports of communications to inform decision making in the DECISIONS survey

Objective

To identify patient- and decision-type predictors of two key aspects of informed decision making: discussing the cons (not just the pros) of medical interventions and asking patients what they want to do.

Methods

Using data from 2473 members of the DECISIONS survey, a nationally representative sample of U.S. adults age 40+, we used logistic regression analysis to identify which patient characteristics predicted patient reports of healthcare providers discussing cons or eliciting preferences about one of 9 common medical decisions.

Results

Multiple demographic characteristics predicted both discussions of cons and elicitations of preferences, although the specific characteristics varied between decision contexts. In particular, African-American respondents reported being more likely to receive a discussion of the cons of cancer screening (OR = 1.69, p < 0.05) yet less likely to have been asked their opinion about either getting a cancer screening test (OR = 0.56, p < 0.05) or initiating medications (OR = 0.53, p < 0.05). Significant cross-decision variations remained even after controlling for patient characteristics.

Conclusions

Important disparities in patient communication and involvement appear to exist both between different types of medical decisions and between different types of patients.

Practice implications

Providers must make sure to consistently discuss the cons of treatment and to solicit input from all patients, especially African-Americans.     

Will use of patient portals help to educate and communicate with patients with diabetes?

Objective

Chronic disease management can require daily attention, and increased levels of patient activation and engagement. We examined whether patients with diabetes perceive a greater benefit to having electronic access to their doctors’ clinic notes compared to patients without diabetes. We hypothesized that easy electronic access to these notes may help patients with self-care by improving education and communication.

Vitality, mental health, and satisfaction with information after breast cancer

OBJECTIVE: The purpose of this study was to investigate the relationship between satisfaction with information about treatment-related and survivorship issues and mental health outcomes, including vitality, in long-term breast cancer survivors. METHODS: Participants who had finished treatment for breast cancer at least 3 months before enrollment completed a survey instrument designed to evaluate satisfaction with diagnostic and treatment information and satisfaction with survivorship information. Mental health and vitality were measured using the Medical Outcomes Study SF-36, and distress was measured using the impact of events scale. Bivariate analyses and linear regression analyses were performed to investigate the relationships between satisfaction with information, mental health, vitality, and distress controlling for clinical and treatment variables. RESULTS: The survey was completed by 231 participants (response rate 83%). More respondents were highly satisfied with treatment information (87%) than with survivorship information (30%, p=0.0001). There was a strong positive relationship between satisfaction with information (both treatment and survivorship issues) and vitality, mental health, and a strong negative relationship with distress. In multivariate analyses, satisfaction with treatment information was independently associated with mental health (p<0.01), and satisfaction with survivorship information was independently associated with vitality (p<0.05). CONCLUSION: Among patients who have completed treatment for breast cancer, satisfaction with diagnosis and treatment information is greater than satisfaction with survivorship issues and satisfaction with information may play an important role in mental health outcomes. PRACTICE IMPLICATIONS: Given the relationship between satisfaction with information and vitality, interventions to improve informational support regarding survivorship issues are warranted.     

Analysis of the relationship among health awareness and health literacy,patient satisfaction levels with primary care in patients admitting to primary care health centers

Objective

The aim of the study was to examine the relationships between health literacy, primary care satisfaction levels and health awareness of the patients who were admitted to primary care centers (Family Health Centers).

The impact of patient-physician alliance on trust following an adverse event

ObjectiveAdverse events in maternity care have a negative impact on the patient-physician relationship. This study assesses the effects of healthcare institutions, communication, and patient involvement on patient trust following adverse events.MethodsSurveys were distributed online to women across the US who had given birth. Women were asked to recount their experiences during their most recent pregnancy including unexpected procedures, adverse events, support from healthcare institutions, and perceived betrayals by healthcare institutions.ResultsAdverse events were negatively correlated with patient trust in their physician. This study’s results illustrated that patient involvement and institutional betrayal mediated patient trust following adverse events. Patients who were more involved in decision-making with their physician were found to have more trust in them following adverse events than those who did not.ConclusionsPatient-physician trust is negatively affected by adverse events, but patient-physician alliance in decision-making can decrease this impact. Therefore, physicians can work proactively to lessen the detrimental effects of adverse events on patient trust, but the patient-physician relationship is still impacted by healthcare institutions.Practice implicationsThis study demonstrates the benefits of encouraging patient alliance with their physician and supports a need for education on the use of these strategies in healthcare.     

子宫全切病人的心理问题及对策

目的 探讨子宫全切术病人的心理问题及积极干预的必要性.方法 随机选取我院因良性疾病行子宫全切术的病人,用症状自评量表(SCL-90)、焦虑自评量表(SAS)和自由反应式问卷进行调查,资料用SPSS10.0统计分析.结果 子宫全切术病人的SCL-90因子得分高于常模,98%的病人术前存在不同程度的焦虑,严重焦虑者占47.9%,病人围手术期的心理问题直接影响了手术的进行与效果,妇科医生的积极干预对病人顺利度过围手术期有重要影响.结论 子宫全切病人术前存在一定的心理问题,影响术后身体康复和生活质量,妇科医生应采取有针对性的干预以达到使病人身心健康的目的.     

Developments in patient activation of people with chronic illness and the impact of changes in self-reported health: results of a nationwide longitudinal study in The Netherlands

Objective

To explore how patient activation, i.e. patients’ perceived knowledge, skills and self-confidence to manage their health and healthcare, develops within chronically ill individuals over time, and to estimate the impact of self-rated health on this development.

Methods

Linear regression analyses and structural equation modeling were conducted using longitudinal data from 751 people with chronic disease(s). Patient activation was assessed by the patient activation measure; self-rated health was assessed by the SF-36 general health scale.

Results

Mean patient activation score at baseline was 60.6, and 18 months later 56.5. Baseline self-rated health had a positive, indirect effect on patient activation at 18 months. In addition, the change in self-rated health over one year (from baseline) was a significant predictor of patients’ activation scores.

Conclusion

Patient activation is not a stable characteristic of people who have been chronically ill for years. Within individuals both increases and decreases occur, but at group level patient activation slightly decreases over time. This may (partly) be due to the deterioration of health that many people with chronic illness experience in course of time.

Practice implications

Clinical practitioners should assess the activation level of chronically ill patients regularly, especially when changes in health occur.     

A rapid review of consumer health information needs and preferences

ObjectiveThis rapid review summarizes best available evidence on consumers’ needs and preferences for information about healthcare, with a focus on the Australian context. Three questions are addressed: 1) Where do consumers find and what platform do they use to access information about healthcare? 2) How do consumers use the healthcare information that they find? 3) About which topics or subjects do consumers need healthcare information?MethodsA hierarchical approach was adopted with evidence first sought from reviews then high quality studies using Medline (via PubMed), CINAHL, Embase, the JBI Database of Systematic Reviews and Implementation Reports, the Campbell Collaboration Library of Systematic Reviews, EPPI-Centre, and Epistemonikos.ResultsTwenty-eight articles were included; four systematic reviews, three literature reviews, thirteen quantitative studies, six qualitative studies, and two mixed methods studies.ConclusionConsumers seek health information at varying times along the healthcare journey and through various modes of delivery. Complacency with historical health information modes is no longer appropriate and flexibility is essential to suit growing consumer demands.Practice implicationsHealth information should be readily available in different formats and not exclusive to any single medium.     

A clinical management system for patient participatory health care support. Assuring the patients' rights and confirming operation of clinical treatment and hospital administration

We conducted a drastic change in our hospital information system to support patient participatory health care provided in the New Hiroshima University Hospital (HUH). The new information system in HUH (HU-MIND II-Hiroshima University Hospital Medical Intelligence and Notice Delivery system II) is designed as "clinical management system" (CMS). The core of this CMS is the electronic health record (EHR), which aims to assure both the patients' right to know, and the attendants' accountability. It is evident that the team practice including patients requires close communication. Data in the EHR are written not only by physicians, but also by all coworkers, which will enable them to realize the team communication and the ordering in a reliable way and to leave the evidence of conducted practices. Moreover, the bedside information systems were set-up at all 700 beds. Patients can access their anamnesis and future clinical care procedures themselves. Based on the demand outlined above, the new regulations of HUH are composed of 21 requirements, conditions of information collection, accumulation and use. Our focus was how to make patients' right compatible with attendants' accountability. As the data owners, patients have the facility to access their own data at their bedsides. They can view their own health condition and treatment program and can control the data flow.     

Online Activity and Participation in Treatment Affects the Perceived Efficacy of Social Health Networks Among Patients With Chronic Illness

Background

The use of online health-related social networks for support, peer-to-peer connections, and obtaining health information has increased dramatically. Participation in an online health-related social network can enhance patients’ self-efficacy and empowerment, as they are given knowledge and tools to manage their chronic health condition more effectively. Thus, we can deduce that patient activation, the extent to which individuals are able to manage their own health care, also increases. However, little is known about the effects of participation in online health-related social networks and patient activation on the perceived usefulness of a website across disease groups.

Objective

The intent of the study was to evaluate the effects and benefits of participation in an online health-related social network and to determine which variables predict perceived site usefulness, while examining patient activation.

Methods

Data were collected from “Camoni”, the first health-related social network in the Hebrew language. It offers medical advice, including blogs, forums, support groups, internal mail, chats, and an opportunity to consult with experts. This study focused on the site’s five largest and most active communities: diabetes, heart disease, kidney disease, spinal injury, and depression/anxiety. Recruitment was conducted during a three-month period in which a link to the study questionnaire was displayed on the Camoni home page. Three questionnaires were used: a 13-item measure of perceived usefulness (Cronbach alpha=.93) to estimate the extent to which an individual found the website helpful and informative, a 9-item measure of active involvement in the website (Cronbach alpha=.84), and The Patient Activation Measure (PAM-13, Cronbach alpha=.86), which assesses a patient’s level of active participation in his or her health care.

Results

There were 296 participants. Men 30-39 years of age scored higher in active involvement than those 40-49 years (P=.03), 50-64 years (P=.004), or 65+ years (P=.01). Respondents 20-29 years of age scored higher in perceived usefulness than those 50-64 years (P=.04) and those 65+ years (P=.049). Those aged 20-29 years scored significantly lower on the PAM-13 scale than those aged 30-39 years (P=.01) and 50-64 years (P=.049). Men and women had similar PAM-13 scores (F _9,283=0.17, P=.76). Several variables were significant predictors of perceived usefulness. Age was a negative predictor; younger age was indicative of higher perceived usefulness. Active involvement was a positive predictor. There was a negative relationship found between PAM-13 scores and perceived usefulness, as taking a less active role in one’s own medical care predicted higher perceived website usefulness. A trend toward higher frequency of website activity was associated with increased perception of usefulness.

Conclusions

Online health-related social networks can be particularly helpful to individuals with lower patient activation. Our findings add information regarding the social and medical importance of such websites, which are gradually becoming an inseparable part of day-to-day chronic disease management in the community.     

Maximizing your Patient Education Skills (MPES): A multi-site evaluation of an innovative patient education skills training course for oncology health care professionals

Objective

To evaluate the acceptability and relevance of the Maximizing your Patient Education Skills (MPES) course and to determine whether it significantly improved knowledge regarding patient education (PE) theory, self-assessed PE competencies, and PE skills using case based vignettes.

Methods

1-Group, multi-site, pre-post-intervention. Participants completed a pre-assessment (T1), participated in the 4-h MPES course, and then a 3-month post-assessment (T2). A focus group was conducted with sub-set of participants.

Results

98 (75%) of participants completed both time points. Participants were highly satisfied with MPES and found it to be relevant. Results showed that MPES had a significant impact on all of our outcome measures.

Conclusion

Findings from this study show that oncology HCPs knowledge of patient education theory, self-assessed competencies and skills can improve after participating in a brief problem-focused and interactive workshop.

Practice implications

Given the evidence that well-planned education and support can contribute to a number of positive health outcomes and the evidence that HCPs may lack the skills to teach and support patients and their families effectively, these results suggest that MPES course may be of value to oncology professionals. Efforts to further develop this course include exploring alternative funding models and using different learning platforms.     

How does patient engagement work in a real-world setting? Recommendations,caveats, and challenges from a psychosocial perspective

ObjectiveTo propose a possible taxonomy for diverse stakeholders outside the healthcare communication field and to promote meaningful patient engagement in healthcare settings. Moreover, to support them in making more coherent policy, strategy, and practice decisions to enhance patient participation in their healthcare systems.DiscussionThis paper is part of the pEACH Position Papers Series and provides a critical and experience-based reflection on patient engagement in different healthcare-related settings. We propose a framework that operationalises actionable patient engagement at the micro-meso-macro levels. Finally, the authors will highlight some “points of attention” that need to be addressed to support patient engagement implementation in healthcare organisations.Conclusion and practice implicationsUnderstanding and systematising the established meanings of patient engagement through a psychosocial lens is critical to addressing the following questions: "how can various health care organisations ensure that authentic patient engagement informs decision-making and strategies", "how can these organisations build authentic connections with their patients", and importantly, "how can patients gain valuable and reliable insights through patient engagement"? Answering these questions can enable key stakeholders to make informed decisions that ensure the quality and effectiveness of patient engagement initiatives in different healthcare settings.     

Empowerment of patients and communication with health care professionals through an electronic health record

Objective: The aim of this project was to design and develop a personal electronic health record (EHR) in order to support patient empowerment and additionally to enhance their communication and information exchange with health professionals through this EHR. Method: The functionality of a personal Electronic Healthcare Record (EHR) may vary from a simple web-based interface for interactive data entry and data review up to a much more powerful system additionally supporting electronic data/document communication between clinical information systems of primary care practitioners or hospitals and even reminder based support for the empowered citizen, to actively take care of his health, based on relevant disease management programs. It is one means to support patient empowerment, additionally supported by tools for building a patient community. Since storage and communication of data in an EHR comprises sensible personal health data, each of those functions needs specific security and access management requirements to be considered and implemented. Result: Clinical pilot projects are already done or under development.