Development and Field Test of an Audit Tool and Tracer Methodology for Clinician Assessment of Quality in End-of-Life Care.

CONTEXT: Quality improvement in end-of-life care generally acquires data from charts or caregivers. "Tracer" methodology, which assesses real-time information from multiple sources, may provide complementary information. OBJECTIVES: The objective of this study was to develop a valid brief audit tool that can guide assessment and rate care when used in a clinician tracer to evaluate the quality of care for the dying patient. METHODS: To identify items for a brief audit tool, 248 items were created to evaluate overall quality, quality in specific content areas (e.g., symptom management), and specific practices. Collected into three instruments, these items were used to interview professional caregivers and evaluate the charts of hospitalized patients who died. Evidence that this information could be validly captured using a small number of items was obtained through factor analyses, canonical correlations, and group comparisons. A nurse manager field tested tracer methodology using candidate items to evaluate the care provided to other patients who died. RESULTS: The survey of 145 deaths provided chart data and data from 445 interviews (26 physicians, 108 nurses, 18 social workers, and nine chaplains). The analyses yielded evidence of construct validity for a small number of items, demonstrating significant correlations between these items and content areas identified as latent variables in factor analyses. Criterion validity was suggested by significant differences in the ratings on these items between the palliative care unit and other units. The field test evaluated 127 deaths, demonstrated the feasibility of tracer methodology, and informed reworking of the candidate items into the 14-item Tracer EoLC v1. CONCLUSION: The Tracer EoLC v1 can be used with tracer methodology to guide the assessment and rate the quality of end-of-life care.

Accessing support and empowerment online: The experiences of individuals with diabetes.

CONTEXT: The use of the internet for health information by those with long-term conditions is growing. It has been argued that this represents a form of empowerment by patients, as it enables them to control the content and flow of the information available to them. To explore this, the use of online discussion groups by those with diabetes was examined. METHOD: Semi-structured interviews were conducted with 21 participants with type 1 and 2 diabetes and analysed using thematic analysis. Participants were recruited via online and offline routes, namely discussion boards, newsletters, and research networks related to diabetes. RESULTS: By drawing on the advice, information, and support shared online, participants were empowered to position themselves as active participants in their own health care and to further engage with health-care professionals. CONCLUSION: The findings indicate that forums can play a valuable role in aiding and motivating individuals in the daily management diabetes and highlight how this support is used to complement formal health services. However, more work needs to be carried out to determine to explore when and under what circumstances online support may be particularly beneficial to those with long-term conditions.

"I Always Vet Things": Navigating Privacy and the Presentation of Self on Health Discussion Boards Among Individuals with Long-Term Conditions.

BACKGROUND: The ethics of research into online communities is a long-debated issue, with many researchers arguing that open-access discussion groups are publically accessible data and do not require informed consent from participants for their use for research purposes. However, it has been suggested that there is a discrepancy between the perceived and actual privacy of user-generated online content by community members. OBJECTIVE: There has been very little research regarding how privacy is experienced and enacted online. The objective of this study is to address this gap by qualitatively exploring the expectations of privacy on Internet forums among individuals with long-term conditions. METHODS: Semistructured interviews were conducted with 20 participants with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and 21 participants with type 1 and 2 diabetes mellitus, and were analyzed using thematic analysis. Participants were recruited via online and offline routes, namely forums, email lists, newsletters, and face-to-face support groups. RESULTS: The findings indicate that privacy online is a nebulous concept. Rather than individuals drawing a clear-cut distinction between what they would and would not be comfortable sharing online, it was evident that these situations were contextually dependent and related to a number of unique and individual factors. CONCLUSIONS: Interviewees were seen to carefully manage how they presented themselves on forums, filtering and selecting the information that they shared about themselves in order to develop and maintain a particular online persona, while maintaining and preserving an acceptable level of privacy.

"You get to know the people and whether they're talking sense or not": Negotiating trust on health-related forums.

The internet is increasingly being used as a source of health advice and information by individuals with long term conditions (LTCs). Specifically, online forums allow people to interact with others with similar conditions. However, it is not clear how online health information is assessed by those with LTCs. This study aims to address this gap by exploring how individuals with contested and uncontested LTCs utilise internet forums. Semi-structured interviews were conducted with 20 participants with ME/CFS and 21 participants with type 1 and 2 diabetes and analysed using thematic analysis. Participants were recruited via online and offline routes, namely forums, email lists, newsletters, and face-to-face support groups. The findings indicate that the use of online forums was a complex and nuanced process and was influenced by a number of individual and illness-specific factors. Participants trusted those with similar experiences and perspectives as themselves, while also valuing conventional biomedical information and advice. By accessing support online, forum users were able to draw on a personalised form of support based on the lived experiences of their peers. However, the role of digital literacy in developing and maintaining online relationships must be acknowledged.

Evaluating Diagnosis and Treatment Patterns of COPD in Primary Care.

OBJECTIVE: Many patients with COPD are misdiagnosed or under-treated. The characteristics of COPD patients and the patterns of treatment have not been well characterized in primary care settings. The objective of this study was to identify patterns of COPD onset, diagnosis and treatment with the goal of facilitating appropriate treatment at earlier stages. METHODS: A national electronic medical record database was used to identify patients with at least a 6-month history prior to a diagnosis of COPD (ICD-9 codes 491.xx, 492.xx, and 496). Pulmonary function test (PFT) results closest to the first diagnosis of COPD were evaluated to characterize disease severity using the Global Initiative for Chronic Obstructive Lung Disease (GOLD) criteria. Prescription data were evaluated at the time of diagnosis. All descriptive statistics were conducted using STATA statistical software. RESULTS: A total of 14 691 patients met the study criteria. Prescription data were available for 9354 (64%) of these patients. Of this group, only slightly over 50% (n = 5264) had a respiratory-related prescription on the date of diagnosis. For those not having a respiratory drug at the time of diagnosis, the average time between diagnosis and the first respiratory-related prescription was 106 (SD +/- 256.4) days. Only 389 (<3%) patients had any PFT data recorded on or prior to the day of their first diagnosis of COPD, and only 273 (2%) had sufficient PFT data available to determine their GOLD severity class. The average time between diagnosis and first COPD prescription was greatest for patients in the lowest severity category (Class 0/I; 163 +/- 288.2 days), and smallest for patients in the highest severity category (Class IV; 124 +/- 152.3 days). CONCLUSION: COPD is often not diagnosed or treated until the later stages of disease, and spirometry is not used routinely to diagnose, stage or guide treatment decisions.