scholarly journals Evaluation and Implementation of ListeningTime: A Web-Based Preparatory Communication Tool for Elderly Patients With Cancer and Their Health Care Providers (Preprint)

2018 ◽  
Author(s):  
Janneke Noordman ◽  
Jeanine A Driesenaar ◽  
Inge R. van Bruinessen ◽  
Johanneke E.A. Portielje ◽  
Sandra van Dulmen

BACKGROUND Effective patient-provider communication is an important condition to deliver optimal care and it supports patients in coping with their disease. The complex and emotionally loaded setting of oncology care challenges both health care providers (HCPs) and patients in reaching effective communication. ListeningTime is developed for elderly patients with cancer and their oncological HCPs to help them (better) prepare the clinical encounter and overcome communication barriers. ListeningTime is a Web-based preparatory communication tool including modeling videos and has an audio-facility to listen back to recorded encounters. OBJECTIVE This study aims to evaluate the usability, perceived usefulness, and actual use of ListeningTime, through the eyes of elderly patients with cancer and their oncological HCPs. If highly rated, the ultimate goal is to make ListeningTime publicly available. METHODS First, members of a panel of elderly cancer survivors and patients (age ≥65 years) were approached to evaluate ListeningTime through a Web-based questionnaire. The usability and perceived usefulness were assessed. Second, ListeningTime was evaluated in real-life practice through a pilot study in 3 Dutch hospitals. In these hospitals, elderly patients with cancer and their oncological HCPs were approached to evaluate ListeningTime through a similar Web-based questionnaire, measuring the perceived usefulness. In addition, we examined log files and user statistics to get insight into how the program was used. RESULTS A total of 30 cancer survivors or patients from the patient panel, and 17 patients and 8 HCPs from the hospitals, evaluated ListeningTime. Overall, both panel members and hospital patients were positive about the ListeningTime website, audio-facility, and video fragments. Some patients suggested improvements with respect to the actors’ performances in the video fragments and believed that ListeningTime is mainly suitable for non experienced patients. HCPs were also positive about ListeningTime; they valued the video fragments for patients and the audio-facility for patients and themselves. However, providers did not relisten their own recorded encounters. Patients did use the audio-facility to relisten their encounters. CONCLUSIONS ListeningTime was highly rated, both by patients and their oncological HCPs. As a result, the video fragments of ListeningTime are now made publicly available for elderly patients with cancer through the Dutch website “kanker.nl.”

JMIR Cancer ◽  
10.2196/11556 ◽  
2019 ◽  
Vol 5 (1) ◽  
pp. e11556 ◽  
Author(s):  
Janneke Noordman ◽  
Jeanine A Driesenaar ◽  
Inge R van Bruinessen ◽  
Johanneke EA Portielje ◽  
Sandra van Dulmen

2020 ◽  
Vol 38 (1) ◽  
pp. 62-67
Author(s):  
Tong Li ◽  
Xianbo Pei ◽  
Xiaoli Chen ◽  
Shuqin Zhang

Background: Understanding the preferences for end-of-life (EOL) care is imperative in providing quality care to patients with life-threatening illness. However, it is difficult for patients, families, and health-care providers to initiate EOL conversations in China. An easy-to-use tool that could help health-care providers initiate EOL discussions is the Heart to Heart Card Game (HHCG), originally designed for Chinese Americans. Objective: To evaluate the EOL preferences among Chinese patients with cancer using the HHCG. Methods: We conducted a descriptive study to assess EOL preferences using HHCG among patients at the oncology chemoradiotherapy department of a Chinese tertiary hospital. Results: We recruited 58 patients in total of which 40 (69%) patients completed HHCG. The most frequently selected card was “I want my family to get along,” followed by “I don’t want to be a burden to my family,” and “I want to maintain my dignity.” Among the 3 cards selected, social needs were rated as the most important (36.7%), followed by spiritual needs (35.8%), physical needs (20.0%), and financial needs (7.5%). The evaluation of the HHCG revealed that more than 70% of the participants highly valued HHCG. Conclusion: The HHCG can be used as a communication tool to encourage EOL discussions between cancer patients and health-care providers in China. Moreover, Chinese patients with cancer attach significant importance to their family and maintaining dignity at the EOL.


2019 ◽  
Vol 15 (10) ◽  
pp. 531-538 ◽  
Author(s):  
Vinita Singh ◽  
Ali J. Zarrabi ◽  
Kimberly A. Curseen ◽  
Roman Sniecinski ◽  
Justine W. Welsh ◽  
...  

PURPOSE: Several states, particularly in the Southeast, have restrictive medical marijuana laws that permit qualified patients to use specific cannabis products. The majority of these states, however, do not provide avenues for accessing cannabis products such as in-state dispensaries. METHODS: We conducted a survey of patients registered for medical marijuana (low tetrahydrocannabinol [THC] oil cards) in an ambulatory palliative care practice in Georgia (one of the states with restrictive medical marijuana laws). RESULTS: We had a total of 101 responses. Among our sample of patients who use cannabis as part of a state-approved low THC oil program, 56% were male and 64% were older than age 50 years. Advanced cancer was the most common reason (76%) for granting the patients access to a low THC oil card. Although patients reported cannabis products as being extremely helpful for reducing pain, they expressed considerable concerns about the legality issues (64%) and ability to obtain THC (68%). Several respondents were using unapproved formulations of cannabis products. For 48% of the patients, their physician was the source of information regarding marijuana-related products. Furthermore, they believed that their health care providers and family members were supportive of their use of cannabis (62% and 79%, respectively). CONCLUSION: Patients on Georgia’s medical marijuana program are most concerned about the legality of the product and their ability to obtain marijuana-related products. Therefore, we recommend that states with medical marijuana laws should provide safe and reliable access to cannabis products for qualifying patients.


2018 ◽  
Vol 09 (04) ◽  
pp. 772-781 ◽  
Author(s):  
Meghan Reading ◽  
Dawon Baik ◽  
Melissa Beauchemin ◽  
Kathleen Hickey ◽  
Jacqueline Merrill

Background Patient-generated health data (PGHD) collected digitally with mobile health (mHealth) technology has garnered recent excitement for its potential to improve precision management of chronic conditions such as atrial fibrillation (AF), a common cardiac arrhythmia. However, sustained engagement is a major barrier to collection of PGHD. Little is known about barriers to sustained engagement or strategies to intervene upon engagement through application design. Objective This article investigates individual patient differences in sustained engagement among individuals with a history of AF who are self-monitoring using mHealth technology. Methods This qualitative study involved patients, health care providers, and research coordinators previously involved in a randomized, controlled trial involving electrocardiogram (ECG) self-monitoring of AF. Patients were adults with a history of AF randomized to the intervention arm of this trial who self-monitored using ECG mHealth technology for 6 months. Semistructured interviews and focus groups were conducted separately with health care providers and research coordinators, engaged patients, and unengaged patients. A validated model of sustained engagement, an adapted unified theory of acceptance and use of technology (UTAUT), guided data collection, and analysis through directed content analysis. Results We interviewed 13 patients (7 engaged, 6 unengaged), 6 providers, and 2 research coordinators. In addition to finding differences between engaged and unengaged patients within each predictor in the adapted UTAUT model (perceived ease of use, perceived usefulness, facilitating conditions), four additional factors were identified as being related to sustained engagement in this population. These are: (1) internal motivation to manage health, (2) relationship with health care provider, (3) supportive environments, and (4) feedback and guidance. Conclusion Although it required some modification, the adapted UTAUT model was useful in understanding of the parameters of sustained engagement. The findings of this study provide initial requirement specifications for the design of applications that engage patients in this unique population of adults with AF.


10.2196/10193 ◽  
2018 ◽  
Vol 7 (9) ◽  
pp. e10193 ◽  
Author(s):  
Maria MT Vreugdenhil ◽  
Rudolf B Kool ◽  
Kees van Boven ◽  
Willem JJ Assendelft ◽  
Jan AM Kremer

Background In the Dutch health care system, general practitioners hold a central position. They store information from all health care providers who are involved with their patients in their electronic health records. Web-based access to the summary record in general practice through a personal health record (PHR) may increase patients’ insight into their medical conditions and help them to be involved in their care. Objective We describe the protocol that we will use to investigate the utilization of patients’ digital access to the summary of their medical records in general practice through a PHR and its effects on the involvement of patients in their care. Methods We will conduct a multilevel mixed-methods study in which the PHR and Web-based access to the summary record will be offered for 6 months to a random sample of 500 polypharmacy patients, 500 parents of children aged <4 years, and 500 adults who do not belong to the former two groups. At the patient level, a controlled before-after study will be conducted using surveys, and concurrently, qualitative data will be collected from focus group discussions, think-aloud observations, and semistructured interviews. At the general practice staff (GP staff) level, focus group discussions will be conducted at baseline and Q-methodology inquiries at the end of the study period. The primary outcomes at the patient level are barriers and facilitators for using the PHR and summary records and changes in taking an active role in decision making and care management and medication adherence. Outcomes at the GP staff level are attitudes before and opinions after the implementation of the intervention. Patient characteristics and changes in outcomes related to patient involvement during the study period will be compared between the users and nonusers of the intervention using chi-square tests and t tests. A thematic content analysis of the qualitative data will be performed, and the results will be used to interpret quantitative findings. Results Enrollment was completed in May 2017 and the possibility to view GP records through the PHR was implemented in December 2017. Data analysis is currently underway and the first results are expected to be submitted for publication in autumn 2019. Conclusions We expect that the findings of this study will be useful to health care providers and health care organizations that consider introducing the use of PHR and Web-based access to records and to those who have recently started using these. Trial Registration Netherlands Trial Registry NTR6395; http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=6395 (Archived by WebCite at http://www.webcitation.org/71nc8jzwM) Registered Report Identifier RR1-10.2196/10193


2019 ◽  
Vol 37 (6) ◽  
pp. 418-423 ◽  
Author(s):  
Elizabeth Cathcart-Rake ◽  
Jennifer M. O’Connor ◽  
Jennifer L. Ridgeway ◽  
Carmen Radecki Breitkopf ◽  
Lois J. Mc Guire ◽  
...  

Background: Although national organizations advocate that health-care providers ask patients about sexual health and sexual and gender minority status—to learn, for example, about side effects of treatment and to understand patients’ social support—these conversations often do not occur. This study explored health-care providers’ reasons for having/not having these conversations. Methods: This single-institution study recruited health-care providers from medical oncology, hematology, radiation oncology, and gynecology. Face-to-face interviews were recorded, transcribed, and analyzed qualitatively. Results: Three main themes emerged: (1) patient-centric reasons for discussing/not discussing sexual health and sexual and gender minority status (“So I think just the holistic viewpoint is important”); (2) health-care provider–centric reasons for discussing/not discussing these issues (“That’s going to take more time to talk about and to deal with…” or “I was raised orthodox, so this is not something we talk about…”; and (3) reasons that appeared to straddle both of the above themes (eg, acknowledgment of the sometimes taboo nature of these topics). Conclusion: Although many health-care providers favor talking with patients with cancer about sexual health and sexual and gender minority status, limited time, personal reluctance, and the taboo nature of these topics appear at times to hamper the initiation of these conversations.


2018 ◽  
Vol 35 (11) ◽  
pp. 1384-1389
Author(s):  
David J. Bartlett ◽  
Daniel S. Childs ◽  
Carmen Radecki Breitkopf ◽  
Megan E. Grudem ◽  
Jessica L. Mitchell ◽  
...  

Objective: A growing number of cancer antineoplastic agents can cause life-threatening acute infusion reactions. Because previous studies have not studied these reactions from the perspective of patients, this study was undertaken with that objective in mind. Methods: Patients who had an acute infusion reaction were interviewed based on the Leventhal model. Once saturation of content was achieved, interviews were transcribed and analyzed with qualitative methodology. Results: Twenty-one patients were enrolled. Most were women (n = 15); the median age was 58 years, and paclitaxel was the most common inciting agent. Three themes emerged. First, these reactions are frightening; patients made remarks such as “I was just thinking oh my God, I am dying.” Second, prior education about these reactions seemed to mitigate this fear, “Basically everything the nurses told me potentially could happen, like happened. So, I was prepared.” Third, when health-care providers were prompt and attentive during the reaction, patients described less fear with future chemotherapy, “So no, I’m really not fearful about going in tomorrow because I know they’ll be there and they’ll be watching me.” Conclusion: These reactions evoke fear which can be mitigated with education prior to and with prompt responsiveness during the acute infusion reaction.


1996 ◽  
Vol 3 (2) ◽  
pp. 113-119 ◽  
Author(s):  
Barbara L. Andersen

Women treated for gynecologic cancer represent approximately 45% of cancer survivors. Many report significant sexual difficulties during follow-up, and data suggest these difficulties are direct consequences of their cancer treatments. Health care providers can identify at the time of initial therapy those women who will be at greater risk for problem development. Clinical observations are provided on the development of sexual problems for these women as they attempt to resume sexual intercourse, and the psychologic and behavioral therapies that can be used for treatment are discussed.


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