TY - JOUR AU - Almeida, Margaret AU - Day, Annie AU - Smith, Bret AU - Bianco, Cynthia AU - Fortuna, Karen PY - 2020/11/26 TI - Actionable Items to Address Challenges Incorporating Peer Support Specialists Within an Integrated Mental Health and Substance Use Disorder System: Co-Designed Qualitative Study JO - J Participat Med SP - e17053 VL - 12 IS - 4 KW - experience-based co-design KW - mental health recovery KW - substance-related disorders KW - peer support KW - peer support specialist KW - health workforce KW - patient experience KW - patient satisfaction KW - coproduction N2 - Background: Peer support specialists offering mental health and substance use support services have been shown to reduce stigma, hospitalizations, and health care costs. However, as peer support specialists are part of a fast-growing mental health and substance use workforce in innovative integrated care settings, they encounter various challenges in their new roles and tasks. Objective: The purpose of this study was to explore peer support specialists? experiences regarding employment challenges in integrated mental health and substance use workplace settings in New Hampshire, USA. Methods: Using experience-based co-design, nonpeer academic researchers co-designed this study with peer support specialists. We conducted a series of focus groups with peer support specialists (N=15) from 3 different integrated mental health and substance use agencies. Audio recordings were transcribed. Data analysis included content analysis and thematic analysis. Results: We identified 90 final codes relating to 6 themes: (1) work role and boundaries, (2) hiring, (3) work-life balance, (4) work support, (5) challenges, and (6) identified training needs. Conclusions: The shared values of experience-based co-design and peer support specialists eased facilitation between peer support specialists and nonpeer academic researchers, and indicated that this methodology is feasible for nonpeer academic researchers and peer support specialists alike. Participants expressed challenges with agency restrictions, achieving work-life balance, stigma, and low compensation. We present actionable items to address these challenges in integrated mental health and substance use systems to potentially offset workforce dissatisfaction and high turnover rates. UR - https://jopm.jmir.org/2020/4/e17053 UR - http://dx.doi.org/10.2196/17053 UR - http://www.ncbi.nlm.nih.gov/pubmed/33242015 ID - info:doi/10.2196/17053 ER - TY - JOUR AU - Etingen, Bella AU - Amante, J. Daniel AU - Martinez, N. Rachael AU - Smith, M. Bridget AU - Shimada, L. Stephanie AU - Richardson, Lorilei AU - Patterson, Angela AU - Houston, K. Thomas AU - Frisbee, L. Kathleen AU - Hogan, P. Timothy PY - 2020/9/30 TI - Supporting the Implementation of Connected Care Technologies in the Veterans Health Administration: Cross-Sectional Survey Findings from the Veterans Engagement with Technology Collaborative (VET-C) Cohort JO - J Participat Med SP - e21214 VL - 12 IS - 3 KW - eHealth KW - mobile health KW - patient engagement KW - telehealth KW - veterans N2 - Background: Widespread adoption, use, and integration of patient-facing technologies into the workflow of health care systems has been slow, thus limiting the realization of their potential. A growing body of work has focused on how best to promote adoption and use of these technologies and measure their impacts on processes of care and outcomes. This body of work currently suffers from limitations (eg, cross-sectional analyses, limited patient-generated data linked with clinical records) and would benefit from institutional infrastructure to enhance available data and integrate the voice of the patient into implementation and evaluation efforts. Objective: The Veterans Health Administration (VHA) has launched an initiative called the Veterans Engagement with Technology Collaborative cohort to directly address these challenges. This paper reports the process by which the cohort was developed and describes the baseline data being collected from cohort members. The overarching goal of the Veterans Engagement with Technology Collaborative cohort is to directly engage veterans in the evaluation of new VHA patient-facing technologies and in so doing, to create new infrastructure to support related quality improvement and evaluation activities. Methods: Inclusion criteria for veterans to be eligible for membership in the cohort included being an active user of VHA health care services, having a mobile phone, and being an established user of existing VHA patient-facing technologies as represented by use of the secure messaging feature of VHA?s patient portal. Between 2017 and 2018, we recruited veterans who met these criteria and administered a survey to them over the telephone. Results: The majority of participants (N=2727) were male (2268/2727, 83.2%), White (2226/2727, 81.6%), living in their own apartment or house (2519/2696, 93.4%), and had completed some college (1176/2701, 43.5%) or an advanced degree (1178/2701, 43.6%). Cohort members were 59.9 years old, on average. The majority self-reported their health status as being good (1055/2725, 38.7%) or very good (524/2725, 19.2%). Most cohort members owned a personal computer (2609/2725, 95.7%), tablet computer (1616/2716, 59.5%), and/or smartphone (2438/2722, 89.6%). Conclusions: The Veterans Engagement with Technology Collaborative cohort is an example of a VHA learning health care system initiative designed to support the data-driven implementation of patient-facing technologies into practice and measurement of their impacts. With this initiative, VHA is building capacity for future, rapid, rigorous evaluation and quality improvement efforts to enhance understanding of the adoption, use, and impact of patient-facing technologies. UR - http://jopm.jmir.org/2020/3/e21214/ UR - http://dx.doi.org/10.2196/21214 UR - http://www.ncbi.nlm.nih.gov/pubmed/33044944 ID - info:doi/10.2196/21214 ER - TY - JOUR AU - Lapadat, Laura AU - Balram, Anusha AU - Cheek, Joanna AU - Canas, Eugenia AU - Paquette, Andrea AU - AU - Michalak, E. Erin PY - 2020/9/10 TI - Engaging Youth in the Bipolar Youth Action Project: Community-Based Participatory Research JO - J Participat Med SP - e19475 VL - 12 IS - 3 KW - community-based participatory research KW - bipolar disorder KW - adolescent KW - young adult KW - youth KW - participatory research N2 - Background: We describe the methodological dimensions of community-based participatory research through a description of study design, youth engagement, and methods/processes in the cocreation of knowledge within a Canadian study, the Bipolar Youth Action Project. This collaborative partnership?carried out by a team composed of academic, community, and youth partners?was designed to investigate self-management and wellness strategies for young adults living with bipolar disorder. Objective: The aim is to describe the opportunities and challenges of this collaboration and to reflect upon the process of involving youth with bipolar disorder in health research that concerns them, and share lessons learned. Methods: The project was conducted in multiple phases over 2 years: (1) grant-writing, with youth contributing to the process; (2) recruitment, in which 12 youth were selected and trained to help shape and conduct two research forums; (3) the first research forum, where more youth were consulted about the strategies they apply to stay well (self-management strategies); (4) data analysis of Forum I findings; (5) research Forum II, which consulted youth with bipolar disorder about knowledge translation of Forum I findings; and (6) data analysis of Forum II findings. Youth peer researchers with bipolar disorder were involved in a significant capacity at every stage in the process. Results: Of the initial 12 youth peer researchers, 7 remained on the project from the recruitment phase until the project ended. They collaborated in the creation of two youth research forums that consulted youth with bipolar disorder on their self-management strategies. Conclusions: This article shares what was learned from the process of partnering with youth with bipolar disorder in a community-based participatory research study. UR - http://jopm.jmir.org/2020/3/e19475/ UR - http://dx.doi.org/10.2196/19475 UR - http://www.ncbi.nlm.nih.gov/pubmed/33044943 ID - info:doi/10.2196/19475 ER - TY - JOUR AU - Meinlschmidt, Gunther AU - Berdajs, Denis AU - Moser-Starck, Roger AU - Frick, Alexander AU - Gross, Sebastian AU - Schurr, Ulrich AU - Eckstein, S. Friedrich AU - Hunziker, Sabina AU - Schaefert, Rainer PY - 2020/7/6 TI - Perceived Need for Psychosocial Support After Aortic Dissection: Cross-Sectional Survey JO - J Participat Med SP - e15447 VL - 12 IS - 3 KW - aortic dissection KW - patient involvement KW - psychosocial support KW - psychosomatic KW - psychotherapy KW - treatment need N2 - Background: The gold standard management of aortic dissection, a life-threatening condition, includes multidisciplinary approaches. Although mental distress following aortic dissection is common, evidence-based psychosocial interventions for aortic dissection survivors are lacking. Objective: The aim of this study is to identify the perceived psychosocial needs of aortic dissection survivors by surveying patients, their relatives, and health professionals to inform the development of such interventions. Methods: This study used a cross-sectional survey and collected responses from 41 participants (27 patients with aortic dissection, 8 relatives of patients with aortic dissection, and 6 health professionals) on key topics, types of interventions, best timing, anticipated success, and the intended effects and side effects of psychosocial interventions after aortic dissection. Results: The principal intervention topics were ?changes in everyday life? (28/41, 68%, 95% CI 54.5%-82.9%), ?anxiety? (25/41, 61%, 95% CI 46.2%-76.2%), ?uncertainty? (24/41, 59%, 95% CI 42.9%-73.2%), ?tension/distress? (24/41, 59%, 95% CI 43.9%-73.8%), and ?trust in the body? (21/41, 51%, 95% CI 35.9%-67.5%). The most commonly indicated intervention types were ?family/relative therapy? (21/41, 51%, 95% CI 35%-65.9%) and ?anxiety treatment? (21/41, 51%, 95% CI 35%-67.5%). The most recommended intervention timing was ?during inpatient rehabilitation? (26/41, 63%, 95% CI 47.6%-77.5%) followed by ?shortly after inpatient rehabilitation? (20/41, 49%, 95% CI 32.4%-65%). More than 95% (39/41) of respondents anticipated a benefit from psychosocial interventions following aortic dissection dissection, expecting a probable improvement in 68.6% (95% CI 61.4%-76.2%) of aortic dissection survivors, a worse outcome for 5% (95% CI 2.9%-7.9%), and that 6% (95% CI 1.8%-10.4%) would have negative side effects due to such interventions. Conclusions: Our findings highlight a substantial need for psychosocial interventions in aortic dissection survivors and indicate that such interventions would be a success. They provide a basis for the development and evaluation of interventions as part of state-of-the-art aortic dissection management. UR - https://jopm.jmir.org/2020/3/e15447 UR - http://dx.doi.org/10.2196/15447 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/15447 ER - TY - JOUR AU - Gordon, Deborah AU - Ford, Anna AU - Triedman, Natalie AU - Hart, Kamber AU - Perlis, Roy PY - 2020/6/16 TI - Health Care Consumer Shopping Behaviors and Sentiment: Qualitative Study JO - J Participat Med SP - e13924 VL - 12 IS - 2 KW - decision making KW - choice behavior KW - mental processes KW - behavioral economics KW - health costs KW - health care costs KW - treatment costs KW - cost sharing KW - health expenditures KW - out-of-pocket costs N2 - Background: Although some health care market reforms seek to better engage consumers in purchasing health care services, health consumer behavior remains poorly understood. Objective: This study aimed to characterize the behaviors and sentiment of consumers who attempt to shop for health care services. Methods: We used a semistructured interview guide based on grounded theory and standard qualitative research methods to examine components of a typical shopping process in a sample size of 54 insured adults. All interviews were systematically coded to capture consumer behaviors, barriers to shopping behavior, and sentiments associated with these experiences. Results: Participants most commonly described determining and evaluating options, seeking value, and assessing or evaluating value. In total, 83% (45/54) of participants described engaging in negotiations regarding health care purchasing. The degree of positive sentiment expressed in the interview was positively correlated with identifying and determining the health plan, provider, or treatment options; making the decision to purchase; and evaluating the decision to purchase. Conversely, negative sentiment was correlated with seeking value and making the decision to buy. Conclusions: Consumer shopping behaviors are prevalent in health care purchasing and can be mapped to established consumer behavior models. UR - http://jopm.jmir.org/2020/2/e13924/ UR - http://dx.doi.org/10.2196/13924 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/13924 ER - TY - JOUR AU - Moore, M. Courtney AU - Wiehe, E. Sarah AU - Lynch, O. Dustin AU - Claxton, EM Gina AU - Landman, P. Matthew AU - Carroll, E. Aaron AU - Musey, I. Paul PY - 2020/5/20 TI - Methicillin-Resistant Staphylococcus aureus Eradication and Decolonization in Children Study (Part 2): Patient- and Parent-Centered Outcomes of Decolonization JO - J Participat Med SP - e14973 VL - 12 IS - 2 KW - patient-centered outcomes KW - Staphylococcus aureus KW - abscess KW - decolonization KW - human-centered design N2 - Background: Skin and soft tissue infections (SSTIs) due to community-acquired methicillin-resistant Staphylococcus aureus (MRSA) can lead to a number of significant known medical outcomes including hospitalization, surgical procedures such as incision and drainage (I&D), and the need for decolonization procedures to remove the bacteria from the skin and nose and prevent recurrent infection. Little research has been done to understand patient and caregiver-centered outcomes associated with the successful treatment of MRSA infection. Objective: This study aimed to uncover MRSA decolonization outcomes that are important to patients and their parents in order to create a set of prototype measures for use in the MRSA Eradication and Decolonization in Children (MEDiC) study. Methods: A 4-hour, human-centered design (HCD) workshop was held with 5 adolescents (aged 10-18 years) who had experienced an I&D procedure and 11 parents of children who had experienced an I&D procedure. The workshop explored the patient and family experience with skin infection to uncover patient-centered outcomes of MRSA treatment. The research team analyzed the audio and artifacts created during the workshop and coded for thematic similarity. The final themes represent patient-centered outcome domains to be measured in the MEDiC comparative effectiveness trial. Results: The workshop identified 9 outcomes of importance to patients and their parents: fewer MRSA outbreaks, improved emotional health, improved self-perception, decreased social stigma, increased amount of free time, increased control over free time, fewer days of school or work missed, decreased physical pain and discomfort, and decreased financial burden. Conclusions: This study represents an innovative HCD approach to engaging patients and families with lived experience with MRSA SSTIs in the study design and trial development to determine meaningful patient-centered outcomes. We were able to identify 9 major recurrent themes. These themes were used to develop the primary and secondary outcome measures for MEDiC, a prospectively enrolling comparative effectiveness trial. Trial Registration: ClinicalTrials.gov NCT02127658; https://clinicaltrials.gov/ct2/show/NCT02127658 UR - http://jopm.jmir.org/2020/2/e14973/ UR - http://dx.doi.org/10.2196/14973 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/14973 ER - TY - JOUR AU - Moore, M. Courtney AU - Wiehe, E. Sarah AU - Lynch, O. Dustin AU - Claxton, EM Gina AU - Landman, P. Matthew AU - Carroll, E. Aaron AU - Musey, I. Paul PY - 2020/5/20 TI - Methicillin-Resistant Staphylococcus aureus Eradication and Decolonization in Children Study (Part 1): Development of a Decolonization Toolkit With Patient and Parent Advisors JO - J Participat Med SP - e14974 VL - 12 IS - 2 KW - Staphylococcus aureus KW - MRSA KW - abscess KW - decolonization KW - human-centered design KW - communication design N2 - Background: Community-acquired methicillin-resistant Staphylococcus aureus (MRSA) skin and soft tissue infections affect many healthy children. A significant number of these children are hospitalized and require surgical incision and drainage (I&D). Once sent home, these children and families are asked to complete burdensome home decolonization and hygiene procedures in an effort to prevent the high rate of recurrent infections. Objective: This component of the Methicillin-resistant Staphylococcus aureus Eradication and Decolonization in Children (MEDiC) study aimed to develop a toolkit to assist MEDiC study participants in completing MRSA decolonization and hygiene procedures at home (the MEDiC kit). Methods: In all, 5 adolescents (aged 10-18 years) who had undergone an I&D procedure for a skin infection and 11 parents of children who had undergone an I&D procedure for a skin infection were engaged in a 4-hour group workshop using a human-centered design approach. The topics covered in this workshop and analyzed for this paper were (1) attitudes about MRSA decolonization procedures and (2) barriers to the implementation of MRSA decolonization and hygiene procedures. The team analyzed the audio and artifacts created during the workshop and synthesized their findings to inform the creation of the MEDiC kit. Results: The workshop activities uncovered barriers to successful completion of the decolonization and hygiene procedures: lack of step-by-step instruction, lack of proper tools in the home, concerns about adverse events, lack of control over some aspects of the hygiene procedures, and general difficulty coordinating all the procedures. Many of these could be addressed as part of the MEDiC kit. In addition, the workshop revealed that effective communication about decolonization would have to address concerns about the effects of bleach, provide detailed information, give reasons for the specific decolonization and hygiene protocol steps, and include step-by-step instructions (preferably through video). Conclusions: Through direct engagement with patients and families, we were able to better understand how to support families in implementing MRSA decolonization and hygiene protocols. In addition, we were able to better understand how to communicate about MRSA decolonization and hygiene protocols. With this knowledge, we created a robust toolkit that uses patient-driven language and visuals to help support patients and families through the implementation of these protocols. Trial Registration: ClinicalTrials.gov NCT02127658; https://clinicaltrials.gov/ct2/show/NCT02127658 UR - http://jopm.jmir.org/2020/2/e14974/ UR - http://dx.doi.org/10.2196/14974 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/14974 ER - TY - JOUR AU - Bouras, Adam AU - Simoes, J. Eduardo AU - Boren, Suzanne AU - Hicks, Lanis AU - Zachary, Iris AU - Buck, Christoph AU - Dhingra, Satvinder AU - Ellis, Richard PY - 2020/5/15 TI - Non-Hispanic White Mothers? Willingness to Share Personal Health Data With Researchers: Survey Results From an Opt-in Panel JO - J Participat Med SP - e14062 VL - 12 IS - 2 KW - surveys and questionnaires KW - confidentiality KW - electronic health records KW - fitness trackers KW - mobile applications KW - logistic models N2 - Background: Advances in information communication technology provide researchers with the opportunity to access and collect continuous and granular data from enrolled participants. However, recruiting study participants who are willing to disclose their health data has been challenging for researchers. These challenges can be related to socioeconomic status, the source of data, and privacy concerns about sharing health information, which affect data-sharing behaviors. Objective: This study aimed to assess healthy non-Hispanic white mothers? attitudes in five areas: motivation to share data, concern with data use, desire to keep health information anonymous, use of patient portal and willingness to share anonymous data with researchers. Methods: This cross-sectional study was conducted on 622 healthy non-Hispanic white mothers raising healthy children. From a Web-based survey with 51 questions, we selected 15 questions for further analysis. These questions focused on attitudes and beliefs toward data sharing, internet use, interest in future research, and sociodemographic and health questions about mothers and their children. Data analysis was performed using multivariate logistic regressions to investigate the factors that influence mothers? willingness to share their personal health data, their utilization of a patient portal, and their interests in keeping their health information anonymous. Results: The results of the study showed that the majority of mothers surveyed wanted to keep their data anonymous (440/622, 70.7%) and use patient portals (394/622, 63.3%) and were willing to share their data from Web-based surveys (509/622, 81.8%) and from mobile phones (423/622, 68.0%). However, 36.0% (224/622) and 40.5% (252/622) of mothers were less willing to share their medical record data and their locations with researchers, respectively. We found that the utilization of patient portals, their attitude toward keeping data anonymous, and their willingness to share different data sources were dependent on the mothers? health care provider status, their motivation, and their privacy concerns. Mothers? concerns about the misuse of personal health information had a negative impact on their willingness to share sensitive data (ie, electronic medical record: adjusted odds ratio [aOR] 0.43, 95% CI 0.25-0.73; GPS: aOR 0.4, 95% CI 0.27-0.60). In contrast, mothers? motivation to share their data had a positive impact on disclosing their data via Web-based surveys (aOR 5.94, 95% CI 3.15-11.2), apps and devices designed for health (aOR 5.3, 95% CI 2.32-12.1), and a patient portal (aOR 4.3, 95% CI 2.06-8.99). Conclusions: The findings of this study suggest that mothers? privacy concerns affect their decisions to share sensitive data. However, mothers? access to the internet and the utilization of patient portals did not have a significant effect on their willingness to disclose their medical record data. Finally, researchers can use our findings to better address their study subjects concerns and gain their subjects trust to disclose data. UR - http://jopm.jmir.org/2020/2/e14062/ UR - http://dx.doi.org/10.2196/14062 UR - http://www.ncbi.nlm.nih.gov/pubmed/33064096 ID - info:doi/10.2196/14062 ER - TY - JOUR AU - Schoch-Spana, Monica AU - Brunson, K. Emily AU - Gwon, Howard AU - Regenberg, Alan AU - Toner, S. Eric AU - Daugherty-Biddison, L. Elizabeth PY - 2020/3/30 TI - Influence of Community and Culture in the Ethical Allocation of Scarce Medical Resources in a Pandemic Situation: Deliberative Democracy Study JO - J Participat Med SP - e18272 VL - 12 IS - 1 KW - pandemic KW - COVID19 KW - influenza KW - disaster KW - preparedness KW - scarce resources KW - culture KW - ethics N2 - Background: Stark gaps exist between projected health needs in a pandemic situation and the current capacity of health care and medical countermeasure systems. Existing pandemic ethics discussions have advocated to engage the public in scarcity dilemmas and attend the local contexts and cultural perspectives that shape responses to a global health threat. This public engagement study thus considers the role of community and culture in the ethical apportionment of scarce health resources, specifically ventilators, during an influenza pandemic. It builds upon a previous exploration of the values and preferences of Maryland residents regarding how a finite supply of mechanical ventilators ought to be allocated during a severe global outbreak of influenza. An important finding of this earlier research was that local history and place within the state engendered different ways of thinking about scarcity. Objective: Given the intrastate variation in the themes expressed by Maryland participants, the project team sought to examine interstate differences by implementing the same protocol elsewhere to answer the following questions. Does variation in ethical frames of reference exist within different regions of the United States? What practical implications does evidence of sameness and difference possess for pandemic planners and policymakers at local and national levels? Methods: Research using the same deliberative democracy process from the Maryland study was conducted in Central Texas in March 2018 among 30 diverse participants, half of whom identified as Hispanic or Latino. Deliberative democracy provides a moderated process through which community members can learn facts about a public policy matter from experts and explore their own and others? views. Results: Participants proposed that by evenly distributing supplies of ventilators and applying clear eligibility criteria consistently, health authorities could enable fair allocation of scarce lifesaving equipment. The strong identification, attachment, and obligation of persons toward their nuclear and extended families emerged as a distinctive regional and ethnic core value that has practical implications for the substance, administration, and communication of allocation frameworks. Conclusions: Maryland and Central Texas residents expressed a common, overriding concern about the fairness of allocation decisions. Central Texas deliberants, however, more readily expounded upon family as a central consideration. In Central Texas, family is a principal, culturally inflected lens through which life and death matters are often viewed. Conveners of other pandemic-related public engagement exercises in the United States have advocated the benefits of transparency and inclusivity in developing an ethical allocation framework; this study demonstrates cultural competence as a further advantage. UR - http://jopm.jmir.org/2020/1/e18272/ UR - http://dx.doi.org/10.2196/18272 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/18272 ER - TY - JOUR AU - Kobayashi, Rei AU - Ishizaki, Masato PY - 2020/3/19 TI - Relationship Between Health Literacy and Social Support and the Quality of Life in Patients With Cancer: Questionnaire Study JO - J Participat Med SP - e17163 VL - 12 IS - 1 KW - health literacy KW - social support KW - quality of life KW - neoplasms KW - health communication N2 - 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. UR - http://jopm.jmir.org/2020/1/e17163/ UR - http://dx.doi.org/10.2196/17163 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/17163 ER - TY - JOUR AU - Prior, Sarah AU - Miller, Andrea AU - Campbell, Steven AU - Linegar, Karen AU - Peterson, Gregory PY - 2020/2/7 TI - The Challenges of Including Patients With Aphasia in Qualitative Research for Health Service Redesign: Qualitative Interview Study JO - J Participat Med SP - e12336 VL - 12 IS - 1 KW - stroke KW - communication KW - research KW - qualitative KW - aphasia KW - participatory research N2 - 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. UR - https://jopm.jmir.org/2020/1/e12336 UR - http://dx.doi.org/10.2196/12336 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/12336 ER - TY - JOUR AU - Masi, Domitilla AU - Gomez-Rexrode, Elvira Amalia AU - Bardin, Rina AU - Seidman, Joshua PY - 2019/12/20 TI - The ?Preparation for Shared Decision-Making? Tool for Women With Advanced Breast Cancer: Qualitative Validation Study JO - J Participat Med SP - e16511 VL - 11 IS - 4 KW - shared decision making KW - clinical decision making KW - patient preferences KW - cancer KW - breast cancer KW - human-centered design KW - patient care planning N2 - 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. UR - http://jopm.jmir.org/2019/4/e16511/ UR - http://dx.doi.org/10.2196/16511 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/16511 ER - TY - JOUR AU - Chiauzzi, Emil AU - Drahos, Jennifer AU - Sarkey, Sara AU - Curran, Christopher AU - Wang, Victor AU - Tomori, Dapo PY - 2019/05/16 TI - Patient Perspective of Cognitive Symptoms in Major Depressive Disorder: Retrospective Database and Prospective Survey Analyses JO - J Participat Med SP - e11167 VL - 11 IS - 2 KW - cognition KW - cognitive function KW - depression KW - major depressive disorder KW - patient-centered care KW - patient preference KW - relapse KW - remission KW - symptoms N2 - Background: Major depressive disorder (MDD) is a common and burdensome condition. The clinical understanding of MDD is shaped by current research, which lacks insight into the patient perspective. Objective: This two-part study aimed to generate data from PatientsLikeMe, an online patient network, on the perception of cognitive symptoms and their prioritization in MDD. Methods: A retrospective data analysis (study 1) was used to analyze data from the PatientsLikeMe community with self-reported MDD. Information on patient demographics, comorbidities, self-rated severity of MDD, treatment effectiveness, and specific symptoms of MDD was analyzed. A prospective electronic survey (study 2) was emailed to longstanding and recently active members of the PatientsLikeMe MDD community. Study 1 analysis informed the objectives of the study 2 survey, which were to determine symptom perception and prioritization, cognitive symptoms of MDD, residual symptoms, and medication effectiveness. Results: In study 1 (N=17,166), cognitive symptoms were frequently reported, including ?severe? difficulty in concentrating (28%). Difficulty in concentrating was reported even among patients with no/mild depression (80%) and those who considered their treatment successful (17%). In study 2 (N=2525), 23% (118/508) of patients cited cognitive symptoms as a treatment priority. Cognitive symptoms correlated with depression severity, including difficulty in making decisions, concentrating, and thinking clearly (rs=0.32, 0.36, and 0.34, respectively). Cognitive symptoms interfered with meaningful relationships and daily life tasks and had a profound impact on patients? ability to work and recover from depression. Conclusions: Patients acknowledge that cognitive dysfunction in MDD limits their ability to recover fully and return to a normal level of social and occupational functioning. Further clinical understanding and characterization of MDD for symptom prioritization and relapse risk due to residual cognitive impairment are required to help patients return to normal cognitive function and aid their overall recovery. UR - https://jopm.jmir.org/2019/2/e11167/ UR - http://dx.doi.org/10.2196/11167 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/11167 ER - TY - JOUR AU - Schlaudecker, D. Jeffrey AU - Goodnow, Keesha AU - Goroncy, Anna AU - Hartmann, Reid AU - Regan, Saundra AU - Rich, Megan AU - Butler, Adam AU - White, Christopher PY - 2019/03/20 TI - Meaningful Partnerships: Stages of Development of a Patient and Family Advisory Council at a Family Medicine Residency Clinic JO - J Participat Med SP - e12105 VL - 11 IS - 1 KW - advisory committee KW - patient-centered care KW - patient engagement KW - graduate medical education N2 - Background: Partnering with patients and families is a crucial step in optimizing health. A patient and family advisory council (PFAC) is a group of patients and family members working together collaboratively with providers and staff to improve health care. Objective: This study aimed to describe the creation of a PFAC within a family medicine residency clinic. To understand the successful development of a PFAC, challenges, potential barriers, and positive outcomes of a meaningful partnership will be reported. Methods: The stages of PFAC development include leadership team formation and initial training, PFAC member recruitment, and meeting launch. Following a description of each stage, outcomes are outlined and lessons learned are discussed. PFAC members completed an open-ended survey and participated in a focus group interview at the completion of the first year. Interviewees provided feedback regarding (1) favorite aspects or experiences, (2) PFAC impact on a family medicine clinic, and (3) future projects to improve care. Common themes will be presented. Results: The composition of the PFAC consisted of 18 advisors, including 8 patient and family advisors, 4 staff advisors, 4 resident physician advisors, and 2 faculty physician advisors. The average meeting attendance was 12 members over 11 meetings in the span of the first year. A total of 13 out of 13 (100%) surveyed participants were satisfied with their experience serving on the PFAC. Conclusions: PFACs provide a platform for patient engagement and an opportunity to drive home key concepts around collaboration within a residency training program. A framework for the creation of a PFAC, along with lessons learned, can be utilized to advise other residency programs in developing and evaluating meaningful PFACs. UR - http://jopm.jmir.org/2019/1/e12105/ UR - http://dx.doi.org/10.2196/12105 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/12105 ER - TY - JOUR AU - Primholdt Christensen, Nina AU - Danbjørg, Boe Dorthe PY - 2018/12/19 TI - Use of Video Consultations for Patients With Hematological Diseases From a Patient Perspective: Qualitative Study JO - J Participat Med SP - e11089 VL - 10 IS - 4 KW - consultations KW - telehealth KW - technology KW - patient KW - hematology N2 - Background: The need for the use of telemedicine is expected to increase in the coming years. There is, furthermore, a lack of evidence about the use of video consultations for hematological patients, and how the use of video consultations is experienced from the patients? perspective. Objective: This study aimed to identify patients? experiences with the use of video consultations in place of face-to-face consultations, what it means to the patient to save the travel time, and how the roles between patients and health care professionals are experienced when using video consultation. This study concerns stable, not acutely ill, patients with hematological disease. Methods: The study was designed as an exploratory and qualitative study. Data were collected through participant observations and semistructured interviews and analyzed in a postphenomenological framework. Results: The data analysis revealed three categories: ?Intimacy is not about physical presence,? ?Handling technology,? and ?Technology increases the freedom that the patients desire.? Conclusions: This study demonstrates what is important for patients with regards to telemedicine and how they felt about seeing health care professionals through a screen. It was found that intimacy can be mediated through a screen and physical presence is not as important to the patient as other things. The study further pointed out how patients valued being involved in the planning of their treatment. The patients also valued the freedom associated with telemedicine and actively took responsibility for their own course of treatment. Patients felt that video consultations allowed them to be free and active, despite their illness. UR - https://jopm.jmir.org/2018/4/e11089/ UR - http://dx.doi.org/10.2196/11089 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/11089 ER - TY - JOUR AU - Benham-Hutchins, Marge AU - Brown, A. Sharon AU - Donovan, E. Erin AU - Guevara, Henry AU - Johnson, H. Alisha PY - 2018/12/06 TI - Spanish-Speaking Hispanic Patients? Information-Sharing Preferences During Hospitalization: An Exploratory Pilot Study JO - J Participat Med SP - e10782 VL - 10 IS - 4 KW - cancer KW - chronic disease KW - diabetes KW - Hispanic KW - self-management N2 - Background: Self-management of chronic conditions, such as cancer or diabetes, requires the coordination of care across multiple care settings. Current patient-centered, hospital-based care initiatives, including bedside nursing handoff and multidisciplinary rounds, often focus on provider information exchange and roles but fall short of the goals of participatory medicine, which recognize the right of patients to partner in their own care and play an active role in self-management. Objective: This study aimed to elicit Spanish-speaking Hispanic patients? perspectives on the exchange and sharing of information during hospitalization. Methods: This exploratory pilot study incorporated a qualitative descriptive approach by using Spanish language focus groups, posthospitalization, to determine patient-identified information needs during hospitalization. Results: Participants preferred paper-based Spanish language medical information. Doctors and nurses were key information providers and communicated with participants verbally, usually with the assistance of a translator. Participants expressed a desire to be informed about medication and treatments, including side effects and why there were changes in medication during hospitalization. In addition, they expressed interest in knowing about the progress of their condition and when they could expect to go home. Emotional readiness to receive information about their condition and prognosis was identified as an individual barrier to asking questions and seeking additional information about their condition(s). Conclusions: Overall, participants shared positive experiences with providers during hospitalization and the usefulness of self-care instructions. Language was not recognized as a barrier by any of the participants. Nevertheless, future research on the influence of emotional readiness on the timing of medical information is needed. UR - http://jopm.jmir.org/2018/4/e10782/ UR - http://dx.doi.org/10.2196/10782 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/10782 ER - TY - JOUR AU - Eggeling, Marie AU - Bientzle, Martina AU - Shiozawa, Thomas AU - Cress, Ulrike AU - Kimmerle, Joachim PY - 2018/11/22 TI - The Impact of Visualization Format and Navigational Options on Laypeople?s Perception and Preference of Surgery Information Videos: Randomized Controlled Trial and Online Survey JO - J Participat Med SP - e12338 VL - 10 IS - 4 KW - attitude KW - decision aids KW - emotions KW - informed decision making KW - knowledge acquisition KW - medical decision making KW - surgery KW - video N2 - Background: Patients need to be educated about possible treatment choices in order to make informed medical decisions. As most patients are medical laypeople, they find it difficult to understand complex medical information sufficiently to feel confident about a decision. Multimedia interventions such as videos are increasingly used to supplement personal consultations with medical professionals. Former research has shown that such interventions may have a positive effect on understanding, decision making, and emotional reactions. However, it is thus far unclear how different features of videos influence these outcomes. Objective: We aimed to examine the impact of visualization formats and basic navigational options in medical information videos about cruciate ligament surgery on recipients? knowledge gain, emotions, attitude, and hypothetical decision-making ability. Methods: In a between-group randomized experiment (Study 1), 151 participants watched 1 of 4 videos (schematic vs realistic visualization; available vs unavailable navigational options). In a separate online survey (Study 2), 110 participants indicated their preference for a video design. All participants were medical laypeople without personal experience with a cruciate ligament rupture and were presented with a fictional decision situation. Results: In Study 1, participants who used navigational options (n=36) gained significantly more factual knowledge (P=.005) and procedural knowledge (P<.001) than participants who did not have or use navigational options (n=115). A realistic visualization induced more fear (P=.001) and disgust (P<.001) than a schematic video. Attitude toward the surgery (P=.02) and certainty regarding the decision for or against surgery (P<.001) were significantly more positive after watching the video than before watching the video. Participants who watched a schematic video rated the video significantly higher than that by participants who watched a realistic video (P<.001). There were no significant group differences with regard to hypothetical decision making and attitude toward the intervention. In addition, we did not identify any influence of the visualization format on knowledge acquisition. In Study 2, 58 of 110 participants (52.7%) indicated that they would prefer a schematic visualization, 26 (23.6%) preferred a realistic visualization, 17 (15.5%) wanted either visualization, and 9 (8.2%) did not want to watch a video at all. Of the participants who wanted to watch a video, 91 (90.1%) preferred to have navigational options, 3 (3.0%) preferred not to have navigational options, and 7 (6.9%) did not mind the options. Conclusion: Our study indicates that the perception of medical information videos is influenced by their design. Schematic videos with navigational options are the most helpful among all videos to avoid negative emotions and support knowledge acquisition when informing patients about an intervention. The visualization format and navigational options are important features that should be considered when designing medical videos for patient education. Trial Registration: Deutsches Register Klinischer Studien DRKS00016003; https://www.drks.de/drks_web/ navigate.do?navigationId= trial.HTML&TRIAL_ID=DRKS00016003 (Archived by WebCite at http://www.webcitation.org/746ASSAhN) UR - http://jopm.jmir.org/2018/4/e12338/ UR - http://dx.doi.org/10.2196/12338 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/12338 ER - TY - JOUR AU - Macdonald, George Graham AU - Koehn, Cheryl AU - Attara, Gail AU - Stordy, Allan AU - Allerdings, Marilee AU - Leese, Jenny AU - Li, C. Linda AU - Backman, L. Catherine PY - 2018/11/21 TI - Patient Perspectives on the Challenges and Responsibilities of Living With Chronic Inflammatory Diseases: Qualitative Study JO - J Participat Med SP - e10815 VL - 10 IS - 4 KW - patient participation KW - chronic disease KW - arthritis KW - inflammation N2 - Background: Collectively, chronic inflammatory diseases take a great toll on individuals and society in terms of participation restrictions, quality of life, and economic costs. Although prior qualitative studies have reported patients? experiences and challenges living with specific diseases, few have compared the consequences of disease management in daily life across different types of inflammatory diseases in studies led by patient partners. Objective: The aim of this study was to identify the significant consequences of inflammatory arthritis, psoriasis, and inflammatory bowel diseases on daily life and explore commonalities across diseases. Methods: A cross-sectional Web-based survey was designed by patient research partners and distributed by patient awareness organizations via their social media channels and by sharing a link in a newspaper story. One open-ended item asked about burdens and responsibilities experienced in daily life. Informed by narrative traditions in qualitative health research, we applied a thematic content analysis to participants? written accounts in response to this item. This is an example of a study conceived, conducted, and interpreted with patients as research partners. Results: A total of 636 Canadians, with a median age band of 55-64 years, submitted surveys, and 80% of the respondents were women. Moreover, 540 participants provided written substantive responses to the open-ended item. Overall, 4 main narratives were generated: (1) daily life disrupted; (2) socioeconomic vulnerabilities; (3) stresses around visible, invisible, and hiding disabilities; and (4) actions aimed at staying positive. Ways in which participants experienced social stigma, pain and fatigue, balancing responsibilities, and worries about the future appeared throughout all 4 narratives. Conclusions: People living with chronic inflammatory diseases affecting joints, skin, and the digestive tract report important gaps between health, social, and economic support systems that create barriers to finding the services they need to sustain their health. Regardless of diagnosis, they report similar experiences navigating the consequences of lifelong conditions, which have implications for policy makers. There is a need for outcome measures in research and service delivery to address patient priorities and for programs to fill gaps created by the artificial administrative separation of health services, social services, and income assistance. UR - http://jopm.jmir.org/2018/4/e10815/ UR - http://dx.doi.org/10.2196/10815 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/10815 ER - TY - JOUR AU - Hullmann, E. Stephanie AU - Keller, A. Stacy AU - Lynch, O. Dustin AU - Jenkins, Kelli AU - Moore, Courtney AU - Cockrum, Brandon AU - Wiehe, E. Sarah AU - Carroll, E. Aaron AU - Bennett Jr, E. William PY - 2018/09/10 TI - Phase I of the Detecting and Evaluating Childhood Anxiety and Depression Effectively in Subspecialties (DECADES) Study: Development of an Integrated Mental Health Care Model for Pediatric Gastroenterology JO - J Participat Med SP - e10655 VL - 10 IS - 3 KW - qualitative research KW - patient-reported outcomes KW - depression KW - anxiety N2 - Background: Children with gastrointestinal symptoms have a very high rate of anxiety and depression. Rapid identification of comorbid anxiety and depression is essential for effective treatment of a wide variety of functional gastrointestinal disorders. Objective: The objective of our study was to determine patient and parent attitudes toward depression, anxiety, and mental health screening during gastroenterology (GI) visits and to determine patient and parent preferences for communication of results and referral to mental health providers after a positive screen. Methods: We augmented standard qualitative group session methods with patient-centered design methods to assess patient and parent preferences. We used a variety of specific design methods in these sessions, including card sorting, projective methods, experience mapping, and constructive methods. Results: Overall, 11 families (11 patients and 14 parents) participated in 2 group sessions. Overall, patients and their parents found integrated mental health care to be acceptable in the subspecialty setting. Patients? primary concerns were for the privacy and confidentiality of their screening results. Patients and their parents emphasized the importance of mental health services not interfering with the GI visit and collaboration between the GI physician, psychologist, and primary care provider. Conclusions: Patients and their families are open to integrated mental health care in the pediatric subspecialty clinic. The next phase of the DECADES study will translate patient and parent preferences into an integrated mental health care system and test its efficacy in the pediatric GI office. UR - http://jopm.jmir.org/2018/3/e10655/ UR - http://dx.doi.org/10.2196/10655 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/10655 ER - TY - JOUR AU - Myneni, Sahiti AU - Sridharan, Vishnupriya AU - Cobb, Nathan AU - Cohen, Trevor PY - 2018/07/24 TI - Content-Sensitive Characterization of Peer Interactions of Highly Engaged Users in an Online Community for Smoking Cessation: Mixed-Methods Approach for Modeling User Engagement in Health Promotion Interventions JO - J Participat Med SP - e9 VL - 10 IS - 3 KW - user engagement KW - smoking cessation KW - text analysis N2 - Background: Online communities provide affordable venues for behavior change. However, active user engagement holds the key to the success of these platforms. In order to enhance user engagement and in turn, health outcomes, it is essential to offer targeted interventional and informational support. Objective: In this paper, we describe a content plus frequency framework to enable the characterization of highly engaged users in online communities and study theoretical techniques employed by these users through analysis of exchanged communication. Methods: We applied the proposed methodology for analysis of peer interactions within QuitNet, an online community for smoking cessation. Firstly, we identified 144 highly engaged users based on communication frequency within QuitNet over a period of 16 years. Secondly, we used the taxonomy of behavior change techniques, text analysis methods from distributional semantics, machine learning, and sentiment analysis to assign theory-driven labels to content. Finally, we extracted content-specific insights from peer interactions (n=159,483 messages) among highly engaged QuitNet users. Results: Studying user engagement using our proposed framework led to the definition of 3 user categories?conversation initiators, conversation attractors, and frequent posters. Specific behavior change techniques employed by top tier users (threshold set at top 3) within these 3 user groups were found to be goal setting, social support, rewards and threat, and comparison of outcomes. Engagement-specific trends within sentiment manifestations were also identified. Conclusions: Use of content-inclusive analytics has offered deep insight into specific behavior change techniques employed by highly engaged users within QuitNet. Implications for personalization and active user engagement are discussed. UR - http://jopm.jmir.org/2018/3/e9/ UR - http://dx.doi.org/10.2196/jopm.9745 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/jopm.9745 ER - TY - JOUR AU - Basile, Melissa AU - Andrews, Johanna AU - Jacome, Sonia AU - Zhang, Meng AU - Kozikowski, Andrzej AU - Hajizadeh, Negin PY - 2018/05/14 TI - A Decision Aid to Support Shared Decision Making About Mechanical Ventilation in Severe Chronic Obstructive Pulmonary Disease Patients (InformedTogether): Feasibility Study JO - J Participat Med SP - e7 VL - 10 IS - 2 KW - Chronic Obstructive Pulmonary Disease KW - COPD KW - shared decision making KW - life support N2 - Background: Severe Chronic Obstructive Pulmonary Disease patients are often unprepared to make decisions about accepting intubation for respiratory failure. We developed a Web-based decision aid, InformedTogether, to facilitate severe Chronic Obstructive Pulmonary Disease patients? preparation for decision making about whether to accept invasive mechanical ventilation for respiratory failure. Objective: We describe feasibility testing of the InformedTogether decision aid. Methods: Mixed methods, pre- and postintervention feasibility study in outpatient pulmonary and geriatric clinics. Clinicians used InformedTogether with severe Chronic Obstructive Pulmonary Disease patients. Patient-participants completed pre- and postassessments about InformedTogether use. The outcomes measured were the following: feasibility/acceptability, communication (Combined Outcome Measure for Risk Communication [COMRADE], Medical Communication Competency Scale [MCCS], Observing Patient Involvement [OPTION] scales), and effectiveness of InformedTogether on changing patients' knowledge, Decisional Conflict Scale, and motivation. Results: We enrolled 11 clinicians and 38 Chronic Obstructive Pulmonary Disease patients at six sites. Feasibility/acceptability: Clinicians and patients gave positive responses to acceptability questions (mean 74.1/89 max [SD 7.24] and mean 59.63/61 [SD 4.49], respectively). Communication: 96% of clinicians stated InformedTogether improved communication (modified MCCS mean 44.54/49 [SD 2.97]; mean OPTION score 32.03/48 [SD 9.27]; mean COMRADE Satisfaction 4.31/5.0 [SD 0.58]; and COMRADE Confidence 4.18/5.0 [SD 0.56]). Preference: Eighty percent of patients discussed preferences with their surrogates by 1-month. Effectiveness: Knowledge scores increased significantly after using InformedTogether (mean difference 3.61 [SD 3. 44], P=.001) and Decisional Conflict decreased (mean difference Decisional Conflict Scale pre/post -13.76 [SD 20.39], P=.006). Motivation increased after viewing the decision aid. Conclusions: InformedTogether supports high-quality communication and shared decision making among Chronic Obstructive Pulmonary Disease patients, clinicians, and surrogates. The increased knowledge and opportunity to deliberate and discuss treatment choices after using InformedTogether should lead to improved decision making at the time of critical illness. UR - http://jopm.jmir.org/2018/2/e7/ UR - http://dx.doi.org/10.2196/jopm.9877 UR - http://www.ncbi.nlm.nih.gov/pubmed/32461812 ID - info:doi/10.2196/jopm.9877 ER - TY - JOUR AU - Hannon, S. Tamara AU - Moore, M. Courtney AU - Cheng, R. Erika AU - Lynch, O. Dustin AU - Yazel-Smith, G. Lisa AU - Claxton, EM Gina AU - Carroll, E. Aaron AU - Wiehe, E. Sarah PY - 2018/05/10 TI - Codesigned Shared Decision-Making Diabetes Management Plan Tool for Adolescents With Type 1 Diabetes Mellitus and Their Parents: Prototype Development and Pilot Test JO - J Participat Med SP - e8 VL - 10 IS - 2 KW - adolescent health services KW - patient-centered care KW - research design KW - diabetes mellitus, type 1 KW - self-management N2 - Background: Adolescents with type 1 diabetes mellitus have difficulty achieving optimal glycemic control, partly due to competing priorities that interfere with diabetes self-care. Often, significant diabetes-related family conflict occurs, and adolescents? thoughts and feelings about diabetes management may be disregarded. Patient-centered diabetes outcomes may be better when adolescents feel engaged in the decision-making process. Objective: The objective of our study was to codesign a clinic intervention using shared decision making for addressing diabetes self-care with an adolescent patient and parent advisory board. Methods: The patient and parent advisory board consisted of 6 adolescents (teens) between the ages 12 and 18 years with type 1 diabetes mellitus and their parents recruited through our institution?s Pediatric Diabetes Program. Teens and parents provided informed consent and participated in 1 or both of 2 patient and parent advisory board sessions, lasting 3 to 4 hours each. Session 1 topics were (1) patient-centered outcomes related to quality of life, parent-teen shared diabetes management, and shared family experiences; and (2) implementation and acceptability of a patient-centered diabetes care plan intervention where shared decision making was used. We analyzed audio recordings, notes, and other materials to identify and extract ideas relevant to the development of a patient-centered diabetes management plan. These data were visually coded into similar themes. We used the information to develop a prototype for a diabetes management plan tool that we pilot tested during session 2. Results: Session 1 identified 6 principal patient-centered quality-of-life measurement domains: stress, fear and worry, mealtime struggles, assumptions and judgments, feeling abnormal, and conflict. We determined 2 objectives to be principally important for a diabetes management plan intervention: (1) focusing the intervention on diabetes distress and conflict resolution strategies, and (2) working toward a verbalized common goal. In session 2, we created the diabetes management plan tool according to these findings and will use it in a clinical trial with the aim of assisting with patient-centered goal setting. Conclusions: Patients with type 1 diabetes mellitus can be effectively engaged and involved in patient-centered research design. Teens with type 1 diabetes mellitus prioritize reducing family conflict and fitting into their social milieu over health outcomes at this time in their lives. It is important to acknowledge this when designing interventions to improve health outcomes in teens with type 1 diabetes mellitus. UR - http://jopm.jmir.org/2018/2/e8/ UR - http://dx.doi.org/10.2196/jopm.9652 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/jopm.9652 ER - TY - JOUR AU - Berkowitz, L. Rachel AU - Phillip, Nimeka AU - Berry, Lyn AU - Yen, H. Irene PY - 2018/01/22 TI - Patient Experiences in a Linguistically Diverse Safety Net Primary Care Setting: Qualitative Study JO - J Participat Med SP - e4 VL - 10 IS - 1 KW - safety-net providers KW - urban health services KW - primary health care KW - patient-centered care KW - qualitative research KW - quality of health care KW - communication barriers N2 - Background: The patient-centered medical home model intends to improve patient experience and primary care quality. Within an urban safety net setting in Northern California, United States, these desired outcomes are complicated by both the diversity of the patient community and the care continuity implications of a residency program. Objective: The objective of our study was to understand the patient experience beyond standardized satisfaction measures. Methods: We conducted a qualitative study, interviewing 19 patients from the clinic (English-, Spanish-, or Mien-speaking patients). Results: Some themes, such as the desire to feel confident in their doctor, emerged across language groups, pointing to institutional challenges. Other themes, such as distrust in care being provided, were tied distinctly to speaking a language different from one?s provider. Still other themes, such as a sense of powerlessness, were related to cultural differences and to speaking a language (Mien) not spoken by staff. Conclusions: Findings illuminate the need to understand cultural behaviors and interactional styles in a diverse patient population to create a high-quality medical home. UR - http://jopm.jmir.org/2018/1/e4/ UR - http://dx.doi.org/10.2196/jopm.9229 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/jopm.9229 ER - TY - JOUR AU - Belkora, K. Jeffrey AU - Naguit, Marijoyce AU - Stupar, Lauren AU - Wiley, James AU - Volz, Shelley AU - O'Donnell, Sara PY - 2017/8/22 TI - The Effects of Coaching Patients to List Questions Before Visiting Cancer Specialists: Retrospective Evaluation of Visit Preparation in a Rural, Underserved Setting JO - J Participat Med SP - e15 VL - 9 IS - 1 KW - Visit preparation KW - self-efficacy KW - anxiety KW - question list KW - patient support KW - community-based participatory research KW - psycho-oncology. N2 - Background: A community-based organization implemented an evidence-based intervention to help rural cancer patients list questions before oncology visits. Objective: Was the question-listing intervention effective in reducing anxiety and increasing decision self-efficacy? Methods: The organization surveyed patients on decision self-efficacy (273 respondents, 99% response rate) and anxiety (190, 68%) before and after question-listing interventions delivered from 2006 ? 2011. We analyzed responses using two-sided paired t-tests at 5% significance and conducted linear regression to identify significant predictors of change. We examined predictors related to the patient (location, demographics, disease status and baseline decision self-efficacy and anxiety); the intervention (including interventionist case volume); and the visit (including type of doctor seen). Results: Question-listing was associated with higher mean decision self-efficacy (2.70/3.43 pre/post, 1-4 min-max, P<.001) and lower mean anxiety (7.26/5.87, 1-10 min-max, P<.001). Significant predictors of change in decision self-efficacy included: patient location; interventionist case volume; baseline decision self-efficacy and anxiety. Higher baseline anxiety was also associated with reductions in anxiety. Conclusions: In a sustained community-based implementation, the intervention helped patients prepare for oncology visits. Patients reported higher self-efficacy and lower anxiety. UR - http://jopm.jmir.org/2017/1/e15/ UR - http://dx.doi.org/10.2196/jopm.8949 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/jopm.8949 ER - TY - JOUR AU - Leese, Jenny AU - Kerr, Sheila AU - McKinnon, Annette AU - Carruthers, Erin AU - Backman, Catherine AU - Li, Linda AU - Townsend, Anne PY - 2017/08/04 TI - Evolving Patient-Researcher Collaboration: An Illustrative Case Study of a Patient-Led Knowledge Translation Event JO - J Participat Med SP - e13 VL - 9 IS - 1 KW - Patient engagement KW - research collaboration KW - knowledge translation KW - patient-led UR - http://jopm.jmir.org/2017/1/e13/ UR - http://dx.doi.org/10.2196/jopm.8756 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/jopm.8756 ER - TY - JOUR AU - Wildevuur, Sabine AU - Thomese, Fleur AU - Ferguson, Julie AU - Klink, Ab PY - 2017/07/07 TI - Information and Communication Technologies to Support Chronic Disease Self-Management: Preconditions for Enhancing the Partnership in Person-Centered Care JO - J Participat Med SP - e14 VL - 9 IS - 1 KW - person-centered care KW - chronic disease management KW - cancer KW - self-management KW - partnership KW - information KW - communication KW - technologies N2 - Objective: In order to alleviate the pressure on health care systems exerted by the growing prevalence of chronic diseases, information and communication technologies (ICT) are being introduced to enable self-management of chronic diseases by supporting partnerships between patients and health care professionals. This move towards chronic disease self-management is accompanied by a shift in focus on integrating the patient with his or her perceptions on the chronic disease as a full-fledged partner into the health care system. This new perspective has been described as ?person-centered care? (PCC). To date, information and communication technologies only partially build on the principles of PCC. This paper examines the preconditions of ICT to enable a person-centered approach to chronic disease management. Methods: Using cancer treatment as a case study for ICT-enabled PCC, we conducted a comparative analysis of thirteen scientific studies on interventions presented as ICT-enabled PCC for cancer treatment, to answer the research question: What are the preconditions of ICT-enabled PCC in chronic disease management? Based on the intended and actual outcomes, we distilled in several analytic steps the preconditions of ICT-enabled PCC for chronic disease self-management. Results: We distinguished four user-related preconditions of ICT-enabled PCC: (shared) decision making, personalized ICT, health-related quality of life, and efficiency. Conclusions: We argue that these four preconditions together can improve people?s self-management of chronic diseases by strengthening the partnership between the patient and the healthcare professional. Moreover, the study revealed a discrepancy between intended and reported actual outcomes in terms of realizing person-centered care. UR - http://jopm.jmir.org/2017/1/e14/ UR - http://dx.doi.org/10.2196/jopm.8846 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/jopm.8846 ER -