A survey of cancer care institutions in Nepal to inform design of a pain management mobile application.

BACKGROUND: One way to improve the delivery of oncology palliative care in low and middle-income countries (LMICs) is to leverage mobile technology to support healthcare providers in implementing pain management guidelines (PMG). However, PMG are often developed in higher-resourced settings and may not be appropriate for the resource and cultural context of LMICs. OBJECTIVES: This research represents a collaboration between the University of Virginia and the Nepalese Association of Palliative Care (NAPCare) to design a mobile health application ('app') to scale-up implementation of existing locally developed PMG. METHODS: We conducted a cross-sectional survey of clinicians within Nepal to inform design of the app. Questions focused on knowledge, beliefs, and confidence in managing cancer pain; barriers to cancer pain management; awareness and use of the NAPCare PMG; barriers to smart phone use and desired features of a mobile app. FINDINGS: Surveys were completed by 97 palliative care and/or oncology healthcare providers from four diverse cancer care institutions in Nepal. 49.5% (n = 48) had training in palliative care/cancer pain management and the majority (63.9%, n = 62) reported high confidence levels (scores of 8 or higher/10) in managing cancer pain. Highest ranked barriers to cancer pain management included those at the country/cultural level, such as nursing and medical school curricula lacking adequate content about palliative care and pain management, and patients who live in rural areas experiencing difficulty accessing healthcare services (overall mean = 6.36/10). Most nurses and physicians use an Android Smart Phone (82%, n = 74), had heard of the NAPCare PMG (96%, n = 88), and reported frequent use of apps to provide clinical care (mean = 6.38/10, n = 92). Key barriers to smart phone use differed by discipline, with nurses reporting greater concerns related to cost of data access (70%, n = 45) and being prohibited from using a mobile phone at work (61%; n = 39). CONCLUSIONS: Smart phone apps can help implement PMG and support healthcare providers in managing cancer pain in Nepal and similar settings. However, such tools must be designed to be culturally and contextually congruent and address perceived barriers to pain management and app use.

Nephrology and Palliative Care Collaboration in the Care of Patients With Advanced Kidney Disease: Results of a Clinician Survey.

RATIONALE & OBJECTIVE: Despite calls for integrating palliative care into chronic kidney disease (CKD) care, uptake remains low. The study aim was to describe clinicians' perceptions of the clinical and research priorities in CKD care and the main barriers to collaboration. STUDY DESIGN: This was a descriptive cross-sectional study using an online survey developed by clinicians and researchers as the primary data collection method. SETTING & PARTICIPANTS: Clinicians in nephrology and palliative care departments (N = 195) at an academic health center in Virginia were invited to participate. Of the 48.7% (n = 95) who responded, most were registered nurses (65.3%) in nephrology (80%) with more than 15 years' experience (40%). PREDICTORS: Factors including discipline (nursing, social work, and physician) and practice area (palliative care or nephrology) were assessed. OUTCOMES: Main outcomes of interest included clinicians' perceptions of the role of palliative care, barriers to collaboration, and the top clinical and research priorities for patients with advanced CKD. ANALYTIC APPROACH: Survey data were analyzed using SPSS using descriptive statistics. RESULTS: Respondents reported being comfortable caring for patients near the end of life and endorsed advance care planning and collaboration between nephrology and palliative care teams. However, both rarely happen. Fragmentation, or poor coordination of care, was perceived to be the main barrier to collaboration. Perceptions regarding collaboration facilitation differed; nephrology clinicians identified patient/family education as the most important facilitator while palliative care clinicians identified clinician education as most important. Top clinical priorities differed. Palliative care clinicians reported pain/symptom management as taking priority while nephrology clinicians identified caregiver/family support. Developing interventions to support treatment-related decision making was the top research priority. LIMITATIONS: Results reflect perceptions of about half the clinicians at 1 academic health center. CONCLUSIONS: Additional studies to capture patients' and families' perspectives and examine end-of-life care processes are needed. Results may inform future targeted interventions.

From loquacious to reticent: understanding patient health information communication to guide consumer health IT design.

BACKGROUND AND SIGNIFICANCE: It is increasingly recognized that some patients self-manage in the context of social networks rather than alone. Consumer health information technology (IT) designed to support socially embedded self-management must be responsive to patients' everyday communication practices. There is an opportunity to improve consumer health IT design by explicating how patients currently leverage social media to support health information communication. OBJECTIVE: The objective of this study was to determine types of health information communication patterns that typify Facebook users with chronic health conditions to guide consumer health IT design. MATERIALS AND METHODS: Seven hundred participants with type 2 diabetes were recruited through a commercial survey access panel. Cluster analysis was used to identify distinct approaches to health information communication both on and off Facebook. Analysis of variance (ANOVA) methods were used to identify demographic and behavioral differences among profiles. Secondary analysis of qualitative interviews ( n = 25) and analysis of open-ended survey questions were conducted to understand participant rationales for each profile. RESULTS: Our analysis yielded 7 distinct health information communication profiles. Five of 7 profiles had consistent patterns both on and off Facebook, while the remaining 2 demonstrated distinct practices, with no health information communication on Facebook but some off Facebook. One profile was distinct from all others in both health information communication practices and demographic composition. Rationales for following specific health information communication practices were categorized under 6 themes: altruism, instrumental support, social support, privacy and stigma, convenience, and Facebook knowledge. CONCLUSION: Facebook has been widely adopted for health information communication; This study demonstrates that Facebook has been widely adopted for health information communication. It also shows that the ways in which patients communicate health information on and off Facebook are diverse.