Moving through adulthood: The lived experience of Irish adults with PKU.

Background: This paper represents a portion of the findings from one of the first research studies eliciting the lived experience of adults with an early diagnosis of Phenylketonuria (PKU) living in Ireland. Ireland has one of the highest prevalence rates of PKU in Europe, however, little is known about the experience of Irish adults with PKU. Furthermore, Ireland is one of the first countries in the world to introduce neonatal screening followed by the introduction of long-term dietary therapy over 50 years ago. This study presents the first comprehensive assessment of the lived experience of Irish adults with PKU on long term dietary therapy. Methods: Narrative data was collected from eleven self-selected participants, using semi-structured interviews. The interviews were divided into five sections focused on eliciting a holistic understanding of the lived experience of adults with PKU living in Ireland. Thematic analysis was guided by Colaizzi's Framework (1978) in conjunction with NVivo qualitative data analysis software. Findings: Findings from the original research encompassed a broad understanding of the lived experience of adults with PKU living in Ireland, including factors influencing dietary therapy and managing PHE blood levels. The themes being discussed within this article are those which appear to be least represented within current literature: living with PKU, including reproductive health, the importance of self-management and establishing routine, support networks in adulthood and concerns regarding aging with PKU. Conclusion: It was evident from the findings that a diagnosis of PKU can influence how adults with PKU may experience aging and their own mortality. These findings offer new insight into the vulnerability attached to the experience of aging with PKU and may be beneficial to advocacy groups and for future development of policy and practice.

Clinical documentation of patient-reported medical cannabis use in primary care: Toward scalable extraction using natural language processing methods.

Background: Most states have legalized medical cannabis, yet little is known about how medical cannabis use is documented in patients' electronic health records (EHRs). We used natural language processing (NLP) to calculate the prevalence of clinician-documented medical cannabis use among adults in an integrated health system in Washington State where medical and recreational use are legal. Methods: We analyzed EHRs of patients ≥18 years old screened for past-year cannabis use (November 1, 2017-October 31, 2018), to identify clinician-documented medical cannabis use. We defined medical use as any documentation of cannabis that was recommended by a clinician or described by the clinician or patient as intended to manage health conditions or symptoms. We developed and applied an NLP system that included NLP-assisted manual review to identify such documentation in encounter notes. Results: Medical cannabis use was documented for 16,684 (5.6%) of 299,597 outpatient encounters with routine screening for cannabis use among 203,489 patients seeing 1,274 clinicians. The validated NLP system identified 54% of documentation and NLP-assisted manual review the remainder. Language documenting reasons for cannabis use included 125 terms indicating medical use, 28 terms indicating non-medical use and 41 ambiguous terms. Implicit documentation of medical use (e.g., "edible THC nightly for lumbar pain") was more common than explicit (e.g., "continues medical cannabis use"). Conclusions: Clinicians use diverse and often ambiguous language to document patients' reasons for cannabis use. Automating extraction of documentation about patients' cannabis use could facilitate clinical decision support and epidemiological investigation but will require large amounts of gold standard training data.

Determined persistence: achieving and sustaining job satisfaction among nurse practitioners.

PURPOSE: Job satisfaction of nurse practitioners (NPs) has been studied using quantitative methods. A grounded theory approach was used in this study to understand the contextual nature of the NPs' description of job satisfaction from a personal perspective. DATA SOURCE: A grounded theory approach as described by Glaser and Strauss was used in this study. The study took place in a rural northeastern state. The researcher conducted face-to-face interviews using open-ended questions with 15 participants. Constant comparative method was utilized to analyze data culminating in a basic social process. CONCLUSIONS: The participants described holistic care as the foundation of their work and their relationship with patients as determining factors of job satisfaction. When NPs felt as though patient care was compromised, they became dissatisfied. NPs were highly satisfied when providing holistic care and within an environment that respected their professional values. IMPLICATIONS FOR PRACTICE: In order to maintain accessibility to high-quality health care, it is imperative to understand the factors that contribute to job satisfaction of NPs. As the healthcare system evolves, healthcare policymakers and healthcare organizations must develop strategies to ensure job satisfaction among NPs.