Evaluation of real-time use of electronic patient-reported outcome data by nurses with patients in home dialysis clinics

Abstract Background Internationally, the use of patient-reported outcomes (PROs) is increasing. Electronic PROs (ePROs) offer immediate access of such reports to healthcare providers. The objectives of this study were to assess nurses’ perspectives on the usefulness and impact of ePRO administration in home dialysis clinics and assess patient perceptions of satisfaction with nursing care following use of ePROs. Methods A concurrent, longitudinal, mixed methods study was conducted over 6 months during home dialysis outpatient clinic visits in two cities. Patients (n = 99) provided ePROs using tablet computers when they visited the clinic on two consecutive occasions approximately 3 months apart. Results were scored, printed, and given to nurses before patient appointments. Patients completed satisfaction items from the Comox Valley Nursing Centre Client questionnaire following their appointments. All clinic nurses (n = 11) participated and they were each interviewed twice, three months and six months after the start of the study. Results The five themes that emerged from the interviews with the nurses include: enhancing focus of the nurses, directing interdisciplinary follow-up, offering support to patients through the process, interpreting results from the visual display, and integrating into workflow. Scores on the Client Questionnaire suggested that patients believed that they received excellent care (97%), and that the nurses perfectly understood their needs (90.9%). However, their satisfaction with care did not change over time when ePRO data was repeatedly provided to their nurses. Conclusions Nurses reported that sharing ePRO data in real-time informed their practice. Although there was no statistically significant change in patient satisfaction scores over time, some patients reported changes and benefits from the use of ePROs. Further research is needed to provide guidance about how ePRO data could enhance person-centered care

Open Data in Qualitative Research

There is a growing movement for research data to be accessed, used, and shared by multiple stakeholders for various purposes. The changing technological landscape makes it possible to digitally store data, creating opportunity to both share and reuse data anywhere in the world for later use. This movement is growing rapidly and becoming widely accepted as publicly funded agencies are mandating that researchers open their research data for sharing and reuse. While there are numerous advantages to use of open data, such as facilitating accountability and transparency, not all data are created equally. Accordingly, reusing data in qualitative research present some epistemological, methodological, legal, and ethical issues that must be addressed in the movement toward open data. We examine some of these challenges and make a case that some qualitative research data should not be reused in secondary analysis

Ten minutes to midnight: a narrative inquiry of people living with dying with advanced copd and their family members

Purpose: To explore how people with end stage chronic obstructive pulmonary disease and their family members describe living in the face of impending death. Methods: A narrative inquiry was undertaken using a social constructionist perspective. Data were collected in 2017–18 in two in-depth interviews, lasting 90 to 120 minutes approximately 3–4 months apart, with a telephone follow-up 2–3 months later. Thematic analysis was conducted including analysis within and across participants. Results: Sixteen people with advanced chronic obstructive pulmonary disease and seven family members participated. For both people with the disease and family members, six key themes/storylines emerged including missing life, being vigilant, hope and realism, avoiding death talk, the scary dying process, and need to prepare. Conclusion: This study highlighted six key storylines about death and dying with advanced chronic obstructive pulmonary disease for people with the illness and their family members. The participants with the illness and their family members held similar perceptions about end of life. More supports are needed for people with advanced chronic obstructive pulmonary disease and their family members in living with their illness while ensuring that they experience a “good death.