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 - DA - 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 AB - 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/ DO - 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 - DA - 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 AB - 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/ DO - 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 - DA - 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 AB - 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/ DO - 10.2196/jopm.9877 UR - http://www.ncbi.nlm.nih.gov/pubmed/ 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 - DA - 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 AB - 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/ DO - 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 - DA - 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 AB - 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/ DO - 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 - DA - 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. AB - 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/ DO - 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 - DA - 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/ DO - 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 - DA - 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 AB - 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/ DO - 10.2196/jopm.8846 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/jopm.8846 ER -