Journal of Participatory Medicine最新文献

About 42% of adults have one or more chronic conditions and 23% have multiple chronic conditions. The coordination and integration of services for the management of patients living with multimorbidity is important for care to be efficient, safe, and less burdensome. Minimally disruptive medicine may optimize this coordination and integration. It is a patient-centered approach to care that focuses on achieving patient goals for life and health by seeking care strategies that fit a patient's context and are minimally disruptive and maximally supportive. The cumulative complexity model practically orients minimally disruptive medicine-based care. In this model, the patient workload-capacity imbalance is the central mechanism driving patient complexity. These elements should be accounted for when making decisions for patients with chronic conditions. Therefore, in addition to decision aids, which may guide shared decision making, we propose to discuss and clarify a potential workload-capacity imbalance.

Background: Low health literacy is associated with factors such as not taking medication as prescribed as well as poor health status and increased hospitalization and mortality risk, and has been identified as a risk factor for decreased physical function in older individuals. Health literacy is becoming an increasingly important issue because of the increased number of people affected by cancer who must make complicated treatment decisions. Health literacy has been shown to be positively associated with quality of life (QOL), and social support has been identified as important for addressing health-related problems and reducing the relative risk of mortality in patients with cancer. However, few studies have examined the relationship between health literacy, social support, age, and QOL.

Objective: The aim of this study is to examine the effects of health literacy, social support, and age on the QOL of patients with cancer.

Methods: An anonymous, self-administered online questionnaire was conducted from March 28 to 30, 2017, in Japan on patients with lung, stomach, or colon cancer that were voluntarily registered with an internet survey company. The survey covered basic attributes, health literacy, social support, and QOL. The European Health Literacy Survey Questionnaire, a comprehensive measure of health literacy instrument, was used to measure health literacy; the Japanese version of the Social Support Scale was used to measure social support; and the Japanese version of the Functional Assessment of Cancer Therapy-General (7-item version) assessment tool was used to measure QOL.

Results: A total of 735 survey invitations were randomly sent to patients with lung, stomach, or colorectal cancer, and responses were obtained from 619 (82.2% response rate). Significant effects on the QOL in patients with lung, stomach, or colon cancer were observed for health literacy, social support, and age, and for the interactions of health literacy and social support and of social support and age. Health literacy, social support, and the interaction between these variables also showed a significant effect on the QOL in patients 50 years or older, but not on those younger than 50 years.

Conclusions: The results of this study revealed that higher health literacy, social support, and age were associated with the QOL in patients with cancer. In addition, the relationship with QOL was stronger for social support than for health literacy. These findings suggest the importance of health literacy and social support and indicate that social support has a greater effect on QOL than does health literacy, while the QOL in patients with cancer aged younger than 50 years was lower than that of those 50 years or older. Therefore, elucidating the needs of these patients and strengthening social support based on those needs may improve their QOL.

Background: After having sustained a traumatic brain injury (TBI), individuals are at risk of functional impairments in information processing, abstract reasoning, executive functioning, attention, and memory. This affects different aspects of communicative functioning. Specific strategies can be adopted to improve the provision of health information to individuals with TBI, including the development of written materials and nonwritten media.

Objective: A user-centered design was adopted to codevelop four audiovisual presentations, a double-sided information sheet, and a checklist aimed at informing individuals about post-TBI sexuality. The last phase of the project was the assessment of the user experience of the information toolkit, based on the User Experience Honeycomb model.

Methods: Overall, two small group discussions and one individual semistructured interview were conducted with individuals with moderate to severe TBI.

Results: The participants mentioned that the toolkit was easily usable and would have fulfilled a need for information on post-TBI sexuality during or after rehabilitation. They mostly agreed that the minimalist visual content was well-organized, attractive, and relevant. The information was easily located, the tools were accessible in terms of reading and visibility, and the content was also considered credible.

Conclusions: Aspects such as usability, usefulness, desirability, accessibility, credibility, and findability of information were viewed positively by the participants. Further piloting of the toolkit is recommended to explore its effects on the awareness of the potential sexual repercussions of TBI in individuals and partners.

Background: Aphasia is an impairment of language, affecting the production or comprehension of speech and the ability to read or write. Aphasia is a frequent complication of stroke and is a major disability for patients and their families. The provision of services for stroke patients differs across health care providers and regions, and strategies directed at improving these services have benefited from the involvement of patients. However, patients with aphasia are often excluded from these co-design activities due to a diminished capacity to communicate verbally and a lack of health researcher experience in working with patients with aphasia.

Objective: The primary aim of this paper is to identify approaches appropriate for working with patients with aphasia in an interview situation and, more generally, determine the importance of including people with aphasia in health service improvement research. The secondary aim is to describe the experiences of researchers involved in interviewing patients with aphasia.

Methods: A total of 5 poststroke patients with aphasia participated in face-to-face interviews in their homes to gain insight into their in-hospital experience following their stroke. Interviews were audio-recorded, and thematic analysis was performed. The experiences of the researchers interviewing these patients were informally recorded postinterview, and themes were derived from these reflections.

Results: The interview technique utilized in this study was unsuitable to gain rich, qualitative data from patients with aphasia. The experience of researchers performing these interviews suggests that preparation, emotion, and understanding were three of the main factors influencing their ability to gather useful experiential information from patients with aphasia. Patients with aphasia are valuable contributors to qualitative health services research, and researchers need to be flexible and adaptable in their methods of engagement.

Conclusions: Including patients with aphasia in health service redesign research requires the use of nontraditional interview techniques. Researchers intending to engage patients with aphasia must devise appropriate strategies and methods to maximize the contributions and valuable communications of these participants.

Participation in health care is currently the zeitgeist/spirit of our times. A myriad of practices characterizes this "participatory Zeitgeist" in contemporary health care, which range from patients and professionals collaborating as partners in service delivery and treatment decision-making, to crowdsourced cures and participation in online communities, to using health apps, to involvement in health care quality improvement initiatives for systems redesign using coproduction and co-design methods. To date, patient engagement and participation in online communities and the use of apps have received a good deal of attention in participatory medicine. However, there has been a less critical examination of participation in health care planning, design, delivery, and improvement. In the face of what Thomas Kuhn called a scientific revolution, we are presented with the opportunity to re-examine some of the assumptions underpinning participation in health care and some of the emerging anomalies and weaknesses in the current science. This re-examination will allow the development of a new paradigm, a science of participation. In this science, we can systematically test, refine, and advance participation in health care to build a unifying language and theories from across the interdisciplinary fields of participatory design, medicine, and research to develop and test models to explain impacts and outcomes. A science of participation will allow the emergent and unexplained facts to be addressed in the current participatory mood of health care planning, design, delivery, and improvement.

Background: The range of decisions and considerations that women with advanced breast cancer (ABC) face can be overwhelming and difficult to manage. Research shows that most patients prefer a shared decision-making (SDM) approach as it provides them with the opportunity to be actively involved in their treatment decisions. The current engagement of these patients in their clinical decisions is suboptimal. Moreover, implementing SDM into routine clinical care can be challenging as patients may not always feel adequately prepared or may not expect to be involved in the decision-making process.

Objective: Avalere Health developed the Preparation for Shared Decision-Making (PFSDM) tool to help patients with ABC feel prepared to communicate with their clinicians and engage in decision making aligned with their preferences. The goal of this study was to validate the tool for its acceptability and usability among this patient population.

Methods: We interviewed a diverse group of women with ABC (N=30). Interviews were audiorecorded, transcribed, and double coded by using NVivo. We assessed 8 themes to understand the acceptability and usability of the tool.

Results: Interviewees expressed that the tool was acceptable for preparing patients for decision making and would be useful for helping patients know what to expect in their care journey. Interviewees also provided useful comments to improve the tool.

Conclusions: This validation study confirms the acceptability and usability of the PFSDM tool for women with ABC. Future research should assess the feasibility of the tool's implementation in the clinical workflow and its impact on patient outcomes.

Background: The effects of brain injury, structural damage, or the physiological disruption of brain function last far beyond initial clinical treatment. Self-tracking and management technologies have the potential to help individuals experiencing brain injury in their personal recovery-helping them to function at their best despite ongoing symptoms of illness. However, current self-tracking technologies may be unsuited for measuring the interconnected, nonlinear ways in which brain injury manifests.

Objective: This study aimed to investigate (1) the current informational practices and sensemaking processes used by postacute brain injury patients during personal recovery and (2) the potential role of quality-of-life instruments in improving patient awareness of brain injury recovery, advocacy, and involvement in care used outside the clinical context. Our objective was to explore the means of improving awareness through reflection that leads to compensatory strategies by anticipating or recognizing the occurrence of a problem caused by impairment.

Methods: We conducted a qualitative study and used essentialist or realist thematic analysis to analyze the data collected through semistructured interviews and questionnaires, 2 weeks of structured data collection using brain injury-specific health-related quality of life instrument, quality of life after brain injury (QoLIBRI), and final interviews.

Results: Informational practices of people with brain injury involve data collection, data synthesis, and obtaining and applying the insights to their lifestyles. Participants collected data through structured tools such as spreadsheets and wearable devices but switched to unstructured tools such as journals and blogs as changes in overall progress became more qualitative in nature. Although data collection helped participants summarize their progress better, the lack of conceptual understanding made it challenging to know what to monitor or communicate with clinicians. QoLIBRI served as an education tool in this scenario but was inadequate in facilitating reflection and sensemaking.

Conclusions: Individuals with postacute brain injury found the lack of conceptual understanding of recovery and tools for making sense of their health data as major impediments for tracking and being aware of their personal recovery. There is an urgent need for a better framework for recovery and a process model for choosing patient-generated health data tools that focus on the holistic nature of recovery and improve the understanding of brain injury for all stakeholders involved throughout recovery.