Experiencing COVID-19 Through the Patient Lens to Promote Empathy: Pilot Testing a Virtual Reality Learning Opportunity.

Understanding the patient's experience with COVID-19 was essential to providing high-quality, person-centered care during the pandemic. Having empathy or being able to understand and respond to the patient's experience may lead to improved outcomes for both patients and clinicians. There is mixed evidence about how best to teach empathy, particularly related to promoting empathy during COVID-19. Literature suggests that virtual reality may be effective in empathy-related education. In collaboration with four patient partners with lived experience, a 360° VR video was developed reflecting their stories and interactions with the healthcare system. The aim of this study was to pilot test the video with interprofessional healthcare providers (HPs) to explore acceptability and utility, while also seeking input on opportunities for improvement. Eleven HPs reviewed the video and participated in one of three focus groups. Focus group data were analyzed using thematic analysis. Data suggest that video content is acceptable and useful in promoting a better understanding of the patient's experience. Building on these encouraging findings, additional iterations of videos to promote empathy will be developed and tested.

The involvement of trauma survivors in hospital-based injury prevention, violence intervention and peer support programs: A scoping review.

BACKGROUND: Despite decades-long involvement of trauma survivors in hospital-based program delivery, their roles and impact on trauma care have not been previously described. We aimed to characterize the literature on trauma survivor involvement in hospital-based injury prevention, violence intervention and peer support programs to map what is currently known and identify future research opportunities. METHODS: A scoping review was conducted following the Joanna Briggs Institute (JBI) methodology. Articles were identified through electronic databases and gray literature. Included articles described hospital-based injury prevention programs, violence intervention programs and peer support programs that involved trauma survivors leveraging their injury experiences to counsel others. Studies were screened and data were abstracted in duplicate. Data were synthesized generally and by program type. RESULTS: Thirty-six published articles and four program reports were included. Peer support programs were described in 21 articles, mainly involving trauma survivors as mentors or peer supporters. Peer support programs' most commonly reported outcome was participant satisfaction (n = 6), followed by participant self-efficacy (n = 5), depression (n = 4), and community integration (n = 3). Eleven injury prevention studies were included, all involving trauma survivors as speakers in youth targeted programs. Injury prevention studies commonly reported outcomes of participants' risk behaviors and awareness (n = 9). Violence intervention programs were included in four articles involving trauma survivors as intervention counsellors. Recidivism rate was the most commonly reported outcome (n = 3). Variability exists across and within program types when reporting on involved trauma survivors' gender, age, selection and training, duration of involvement and number of survivors involved. Outcomes related to trauma survivors' own experiences and the impacts to them of program involvement were under-studied. CONCLUSIONS: Significant opportunity exists to fill current knowledge gaps in trauma survivors' involvement in trauma program delivery. There is a need to describe more fully who involved trauma survivors are to inform the development of effective future interventions.

Evaluation of an Online Education Resource on Radiation Therapy Created for Patients with Postprostatectomy Prostate Cancer and Their Caregivers.

INTRODUCTION: Radiation therapy (RT) after prostatectomy is an important curative treatment option for patients with prostate cancer. It can be delivered immediately after surgery as adjuvant treatment, or after biochemical PSA failure as salvage treatment. There is currently a lack of consensus regarding whether salvage RT in the event of biochemical failure or immediate adjuvant RT is the optimal postprostatectomy RT treatment. Although both types of postprostatectomy RT are generally well tolerated, patients may develop some toxicity that can impact their quality of life and the duration and frequency of treatments can be challenging for patients. It is imperative that patients be provided with evidence-based information so that they are able to make a treatment decision most aligned with their values. METHODS: To help address patients' informational needs, an online education resource was created for patients with prostate cancer considering postoperative RT. Patients and their families were asked to evaluate the effectiveness of this resource using a validated purpose-based information assessment. RESULTS: Nineteen patients were approached and 14 participated, but only five patients returned their evaluations (35%). Sixty percent found the information to be important with regards to each of the six commonly identified purposes in the purpose-based information assessment: organizing, understanding, decision-making, planning, emotional support, and discussing. Only one participant found the information hard to understand and had difficulty finding specific information. DISCUSSION: Patients should be encouraged to actively participate in their treatment decision-making process involving postprostatectomy RT. For patients to make well-informed decisions, patients must be provided with clear and accessible information so that they may understand their disease and the treatment options. CONCLUSION: An online education resource has been developed that most study respondents found clear and helpful for a variety of identified purposes. Overall, this online education resource has the potential to reach a large number of patients and their caregivers who desire specific information and involvement in future treatment decisions.

Breast Cancer Patients' Preferences for Adjuvant Radiotherapy Post Lumpectomy: Whole Breast Irradiation vs. Partial Breast Irradiation-Single Institutional Study.

This study was conducted to elucidate patients with early breast cancer preference for standard whole breast irradiation (WBI) or partial breast irradiation (PBI) following lumpectomy, as well as identify important factors for patients when making their treatment decisions. Based on relevant literature and ASTRO consensus statement guidelines, an educational tool and questionnaire were developed. Consenting, eligible women reviewed the educational tool and completed the trade-off questionnaire. Descriptive statistics were calculated, as well as chi-squares and a logistic regression model. Of the 90 patients who completed the study, 62 % preferred WBI, 30 % preferred PBI, 4 % required more information, and 3 % had no preferences. Of the patients who chose WBI, 58 % preferred hypofractionated RT, whereas 25 % preferred the conventional RT regimen. The majority of patients rated recurrence rate [WBI = 55/55 (100 %), PBI = 26/26 (100 %)] and survival [WBI = 54/55 (98 %), PBI = 26/26 (100 %)] as important factors contributing to their choice of treatment preference. Financial factors [WBI = 21/55 (38 %), PBI = 14/26 (53 %)] and convenience [WBI = 36/54 (67 %), PBI = 18/26 (69 %)] were rated as important less frequently. Significantly, more patients who preferred WBI also rated standard method of treatment as important when compared to patients who preferred PBI [WBI = 52/54 (96 %), PBI = 16/26 (61 %), χ 2 = 16.63, p = 0.001]. The majority of patients with early breast cancer who were surveyed for this study preferred WBI as an adjuvant treatment post lumpectomy, yet there was a sizeable minority who preferred PBI. This was associated with the importance patients place on standard treatment. These results will help medical professionals treat patients according to patient values.

Developing and Evaluating Multimedia Patient Education Tools to Better Prepare Prostate-Cancer Patients for Radiotherapy Treatment (Randomized Study).

The purpose of this study is to determine the effectiveness of multimedia educational tools to improve CT planning preparation for intensity modulated radiotherapy (IMRT) for prostate cancer. Many patients are not prepared when given verbal preparation instructions to have a full bladder and empty rectum for their IMRT and require being rescanned, which results in additional costs for the patient and the hospital. A pamphlet and video outlining the proper preparation for prostate IMRT was created to decrease additional scans and the associated costs, while increasing patient satisfaction. A controlled, randomized experimental group study was conducted to examine the effectiveness of the multimedia tools (the video and the pamphlet), as compared to the pamphlet only, in preparing patients for their planning CT appointment. We found no statistical difference between the multimedia group and the pamphlet group in patients' preparedness for their appointments and the rescanning rate. However, patients in the multimedia group indicated that they felt more prepared about their treatment after watching the video and stated that they would recommend the video to other patients with prostate cancer. Furthermore, patients who had to wait longer for their planning CT appointment felt less prepared by the materials than those with a shorter wait time. We recommend reducing wait times between appointments as much as possible to increase patients' preparedness for the planning CT. We conclude that providing multimedia treatment information and minimizing wait times increases patients' feelings of preparedness leading to a more positive treatment experience and reducing costly rescans. TRIAL REGISTRATION: ClinicalTrials.gov NCT02410291.

Self-management education interventions for patients with cancer: a systematic review.

PURPOSE: This systematic review was intended to identify the effectiveness and inclusion of essential components of self-management education interventions to support patients with cancer in developing the skills needed for effective self-management of their disease and the acute or immediate, long-term, and late harmful effects of treatments. METHODS: Self-management education interventions were included if they were randomized controlled trials (RCTs) containing at least one of the eight core elements outlined by the research team. A systematic search was conducted in Ovid MEDLINE (2005 through April 2015), Embase (2005 to 2015, week 15), the Cochrane Database of Systematic Reviews (Issue 4, April 2015), CINAHL (2005 to 2015) and PsychINFO (2005 to 2015). Keywords searched include 'self-management patient education' or 'patient education'. RESULTS: Forty-two RCTs examining self-management education interventions for patients with cancer were identified. Heterogeneity of interventions precluded meta-analysis, but narrative qualitative synthesis suggested that self-management education interventions improve symptoms of fatigue, pain, depression, anxiety, emotional distress and quality of life. Results for specific combinations of core elements were inconclusive. Very few studies used the same combinations of core elements, and among those that did, results were conflicting. Thus, conclusions as to the components or elements of self-management education interventions associated with the strength of the effects could not be assessed by this review. CONCLUSION: Defining the core components of cancer self-management education and the fundamental elements for inclusion in supporting effective self-management will be critical to ensure consistent and effective provision of self-management support in the cancer system.

Empowering Patients through Education: Exploring Patients' Needs about Postoperative Radiation Therapy for Prostate Cancer at the Sunnybrook Odette Cancer Centre.

INTRODUCTION: There is currently no consensus regarding the optimal treatment for postprostatectomy prostate cancer patients. The primary objective of this study was to investigate patient opinions regarding the questions that should be discussed between health care professionals and postprostatectomy patients who may require radiation therapy with adjuvant or salvage intent, to help facilitate the decision-making process. METHODS: Patients who were consulted for treatment of prostate cancer at the Sunnybrook Odette Cancer Centre and who had undergone a prostatectomy were invited to complete a survey. Respondents were asked to rate the importance of 74 questions that may be important to patients in their situation using a four-point ordinal scale (essential, important, no opinion, and avoid). Questions were grouped into six domains pertaining to diagnosis, decision making, radiation therapy procedures, benefits, side effects, and supportive network. Patients were also asked to list any other additional comments or questions that should be included. Descriptive statistics were calculated for all variables of interest. Chi-square analyses and Fisher exact tests were used to assess differences in numbers of patients choosing the essential response between demographics. RESULTS: Thirty-one patients agreed to participate and completed the survey. The majority of questions rated as essential or important by patients were from the "understanding my situation and prostate cancer diagnosis" domain, accounting for over 90% of patients. Overall, patients who were over 60, white, had an education of high school or less, and lived more than 10 km away from the cancer centre were more likely to have rated these questions as "important" or "essential." A few additional comments were also listed regarding side effects, prostate-specific antigen levels, further testing, and radiation therapy treatment. CONCLUSIONS: Our study showed that there is wide variability among patients regarding the information that they want and need. Every question in our study was essential to some patients, and there was no question deemed so by the whole group. The information from the study will help in building an educational tool for postprostatectomy patients with prostate cancer and their families.

Perspectives from older adults receiving cancer treatment about the cancer-related information they receive.

OBJECTIVE: Cancer patients have reported that information plays a significant role in their capacity to cope with cancer and manage the consequences of treatment. This study was undertaken to identify the importance older adults receiving cancer treatment assign to selected types of cancer-related information, their satisfaction with the cancer-related information they received, and the barriers to effective information provision for this age group. METHODS: This study was conducted in two phases with separate samples. Six hundred and eighty-four older cancer patients receiving treatment completed a standardized survey and 39 completed a semi-structured interview to gather perspectives about cancer-related information. Data were analyzed for 65-79 years and 80+ year groups. RESULTS: Information topics about their medical condition, treatment options, and side effects of treatment were rated as most important by the older cancer patients. Women assigned a higher importance ratings than men to information overall (t = 4.8, P < 0.01). Although participants were generally satisfied with the information, they received many described challenges they experienced in communicating with health care professionals because of the medical language and fast pace of speaking used by the professionals. CONCLUSIONS: The older cancer patients in this study endorsed the same topics of cancer-related information as most important as has been reported in studies for other age groups. However, this older group recommended that, during their interactions with older individuals, health care professionals use fewer medical words, speak at a slower pace, and provide written information in addition to the actual conversation.

Decisional support throughout the cancer journey for older women diagnosed with early stage breast cancer: a single institutional study.

To determine if older women with early stage breast cancer have sufficient decisional support during their breast cancer journey, a questionnaire-based study was conducted at the Sunnybrook Odette Cancer Centre, in Toronto, Ontario, Canada. Women with stages I and II breast cancer, ≥60 years, were contacted upon completion of their adjuvant treatment. A questionnaire was developed based on focus groups, the literature, and consultation with patients and a multidisciplinary team of experts. The questionnaire was divided into six domains as follows: (1) information support surrounding diagnosis, (2) impact of cancer diagnosis on the patient, (3) quality of interaction with healthcare team, (4) decisional support from the healthcare team, (5) additional information needs surrounding treatment decision, and (6) information support during radiation treatment. Ninety-two of 137 patients approached were included in the analysis. Ninety percent were > 60 years at the time of diagnosis and 65% had stage I invasive breast cancer. The majority of women received adequate decisional support during their cancer journey. Approximately 90% of women indicated that they received a high level of support during their cancer diagnosis. We found no significant differences in overall decisional support based on age at diagnosis, education level, ethnicity, or the presence of co-morbidities. However, participants desired additional educational resources such as a worksheet, consultation summary, or workbook to assist in making a treatment decision. The majority of participants felt that they had sufficient support while making a treatment decision for breast cancer.

Measuring trends in performance across time: providing information to cancer patients.

Providing relevant, up-to-date information is identified as a quality standard of cancer care. Cancer programs need to be able to evaluate whether they are meeting the standard and to monitor their performance on an ongoing basis. Routine collection of clearly defined data, using reliable and valid measures, provides cancer program leaders with dependable information upon which to make decisions and monitor trends in performance over time. This article describes one cancer centre's experience in using standardized data collection regarding provision of patient information. The Cancer Patient Information Importance-Satisfaction Scale has been administered routinely in an outpatient setting over eight years. The profile we create from the data assists us in making informed decisions about patient education initiatives.

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.

Patient accessible electronic health records: exploring recommendations for successful implementation strategies.

BACKGROUND: Providing patients with access to their electronic health records offers great promise to improve patient health and satisfaction with their care, as well to improve professional and organizational approaches to health care. Although many benefits have been identified, there are many questions about best practices for the implementation of patient accessible Electronic Health Records (EHRs). OBJECTIVES: To develop recommendations to assist health care organizations in providing patients with access to EHRs in a meaningful, responsible, and responsive manner. METHODS: A Patient Accessible Electronic Health Record (PAEHR) Workshop was held with nationally and internationally renowned experts to explore issues related to providing patient access to the EHR and managing institutional change. RESULTS: The PAEHR Workshop was attended by 45 participants who discussed recommendations for the implementation of patient accessible EHRs. Recommendations were discussed under four subject domains: (1) providing patient access to the EHR, (2) maintaining privacy and confidentiality related to the PAEHR, (3) patient education and navigation of the PAEHR, and (4) strategies for managing institutional change. The discussion focused on the need for national infrastructure, clear definitions for privacy, security and confidentiality, flexible, interoperable solutions, and patient and professional education. In addition, there was a strong call for research into all domains of patient accessible EHRs to ensure the adoption of evidence-based practices. CONCLUSIONS: Patient access to personal health information is a fundamental issue for patient engagement and empowerment. Health care professionals and organizations should consider the potential benefits and risks of patient access when developing EHR strategies. Flexible, standardized, and interoperable solutions must be integrated with outcomes-based research to activate effectively patients as partners in their health care.

Is Canada ready for patient accessible electronic health records? A national scan.

BACKGROUND: Access to personal health information through the electronic health record (EHR) is an innovative means to enable people to be active participants in their own health care. Currently this is not an available option for consumers of health. The absence of a key technology, the EHR, is a significant obstacle to providing patient accessible electronic records. To assess the readiness for the implementation and adoption of EHRs in Canada, a national scan was conducted to determine organizational readiness and willingness for patient accessible electronic records. METHODS: A survey was conducted of Chief Executive Officers (CEOs) of Canadian public and acute care hospitals. RESULTS: Two hundred thirteen emails were sent to CEOs of Canadian general and acute care hospitals, with a 39% response rate. Over half (54.2%) of hospitals had some sort of EHR, but few had a record that was predominately electronic. Financial resources were identified as the most important barrier to providing patients access to their EHR and there was a divergence in perceptions from healthcare providers and what they thought patients would want in terms of access to the EHR, with providers being less willing to provide access and patients desire for greater access to the full record. CONCLUSION: As the use of EHRs becomes more commonplace, organizations should explore the possibility of responding to patient needs for clinical information by providing access to their EHR. The best way to achieve this is still being debated.

Does psychosocial intervention improve survival in cancer? A meta-analysis.

BACKGROUND: There is growing evidence that positive psychosocial intervention improves the wellbeing of cancer patients. Two meta-analyses conducted to date confirmed a significant small-to-moderate effect on quality of life. Previous randomized trials reported that psychosocial intervention also improved survival. However, more recent trials failed to detect a difference in survival. A systematic review of randomized trials that have examined the effectiveness of psychosocial intervention in cancer patients in terms of survival prolongation was conducted. METHODS: Randomized trials published between 1966 and June 2002 were identified through the databases of MEDLINE, EMBASE, CancerLit, CINAHL, Cochrane Library and reference lists of relevant articles. Relevant data were abstracted. The results of randomized trials were pooled using meta-analyses to estimate the effect of treatment on overall survival at one and four years in all cancer patients and also in breast cancer patients with metastases. RESULTS: Eight trials, which involved a total of 1062 patients (all cancer histologies), were identified. One- and four-year overall survival rates were obtained from eight trials and six trials, respectively. There was no statistically significant difference in the overall survival rates at one and four years [P = 0.6; RR 0.94 (95% CI 0.72, 1.22)] and [P = 0.5; RR 0.93 (95% CI 0.77, 1.13)], respectively. Four trials examined 511 metastatic breast cancer patients. Again, there was no statistically significant difference in the overall survival rates at one and four years [P = 0.3; RR 0.87 (95% CI 0.67, 1.14)] and [P = 0.3; RR 0.91 (95% CI 0.76, 1.10)], respectively. CONCLUSIONS: Psychosocial intervention does not prolong survival in cancer. This meta-analysis can not rule out small effect sizes because of the small number of trials and small trial sizes.

What do patients living with advanced cancer and their carers want to know? - a needs assessment.

Our primary objective was to determine the content and format that is most suitable for educational events targeting patients and carers who are living with advanced cancer. Secondary objectives included examining the differences in information needs between patients and their carers, and providing an estimate of the rate of participation in educational events targeting such patients and carers. Out-patients receiving palliative radiotherapy at Toronto Sunnybrook Regional Cancer Center and their carers were invited to complete the Advanced Cancer Information Needs Survey. One hundred forty-four respondents participated in the survey. The participants identified the management of pain, fatigue, and home palliative care resources as the areas in which information was most needed. Carers displayed greater interest, and the range of topics in which they continue to seek additional information is wider. Thirty-one percent of respondents said they would participate in an educational event. A 'one-on-one' interview approach and short written materials were the preferred sources of information. Our study examined potential content areas and preferred format for proposed educational events targeting patients and carers living with advanced cancer. We also highlighted the reasons for, and potential limitations of this approach. The investment of future effort in evaluating the impact of 1 on 1 interviews and 'short written materials' on the informational needs of patients and carers living with advanced cancer is warranted.