Mailed Letter Versus Phone Call to Increase Diabetic-Related Retinopathy Screening Engagement by Patients in a Team-Based Primary Care Practice: Prospective, Single-Masked, Randomized Trial.

BACKGROUND: Vision loss from diabetic-related retinopathy (DR) is preventable through regular screening. OBJECTIVE: The purpose of this study was to test different patient engagement approaches to expand a teleophthalmology program at a primary care clinic in the city of Toronto, Canada. METHODS: A teleophthalmology program was set up in a large, urban, academic, team-based primary care practice. Patients older than 18 years with type 1 or type 2 diabetes were randomized to one of the following 4 engagement strategies: phone call, mail, mail plus phone call, or usual care. Outreach was conducted by administrative staff within the clinic. The primary outcome was booking an appointment for DR screening. RESULTS: A total of 23 patients in the phone, 28 in the mail, 32 in the mail plus phone call, and 27 in the control (usual care) group were included in the analysis. After the intervention and after excluding patients who said they were screened, 88% (15/17) of patients in the phone, 11% (2/18) in the mail, and 100% (21/21) in the mail and phone group booked an appointment with the teleophthalmology program compared to 0% (0/12) in the control group. Phoning patients positively predicted patients booking a teleophthalmology appointment (P<.001), whereas mailing a letter had no effect. CONCLUSIONS: Patient engagement to book DR screening via teleophthalmology in an urban, academic, team-based primary care practice using telephone calls was much more effective than patient engagement using letters or usual care. Practices that have access to a local DR screening program and have resources for such engagement strategies should consider using them as a means to improve their DR screening rates. TRIAL REGISTRATION: ClinicalTrials.gov NCT03927859; https://clinicaltrials.gov/ct2/show/NCT03927859.

Nurses' Experiences of End-of-life Photography in NICU Bereavement Support.

PURPOSE: To qualitatively explore neonatal intensive care nurses' experiences with end-of-life photography as part of their bereavement support work with families. DESIGN AND METHODS: An Interpretive Phenomenological Analysis with data collected through a focus group (n = 6) and one semi-structured interview (n = 1) with neonatal nurses from a Level 3/4 NICU in a Canadian pediatric hospital. RESULTS: Participants' comfort with EOL photography developed over time through exposure to bereavement scenarios and positive experiences with families. Participants' experienced a feeling of pressure to balance the photography with clinical responsibilities and find the right time to introduce photography while being sensitive to family experiences. Participants experienced EOL photography as something tangible to give families and were satisfied knowing the images might play an important role in the family's healing after the NICU. CONCLUSIONS: All participants had come to value EOL photography as a positive and meaningful part of their work with bereaved families. Identified challenges related to balancing the practice with the unpredictable flow and demands of critical care and to developing an appreciation for and comfort with the photography as part of their healing and the families' healing. PRACTICAL IMPLICATIONS: Findings contribute insight into care-provider experience that can inform best practices, training, and staff support for palliative and bereavement work in neonatal and pediatric settings. The findings suggest a need to support nurses emotionally and clinically in carrying out this photography as part of their care for families.

Infant Maternal Perinatal Advanced Care Team: A Pilot Collaboration for Families Facing a Life-Threatening Fetal Diagnosis.

Background: The Infant Maternal Perinatal Advanced Care Team program was launched in 2018 to enhance perinatal palliative care services in Toronto, Canada. Methods: Pilot patients were (1) carrying a fetus with a life-limiting diagnosis and (2) receiving care at the high-risk fetal center. Individualized care included opportunities for establishing goals, labor/delivery planning, grief support, and pediatric palliative care support. Results: A total of 107 patients were included during the two-year clinical pilot program. Of those who continued their pregnancy, 45% had care goals focused on comfort while 55% had goals focused on life prolongation. A significant proportion in both groups experienced a fetal or neonatal death. For babies who received comfort-focused care, one-third were transferred to hospice or home. Conclusions: A comprehensive perinatal palliative care pathway ensures that more families receive options of pre- and postnatal palliative care supports in varied circumstances where there is significant risk of fetal and neonatal mortality.

Reimagining Perinatal Palliative Care: A Broader Role for Support in the Face of Uncertainty.

Perinatal medicine is confronted by a growing number of complex fetal conditions that can be diagnosed prenatally. The evolution of potentially life-prolonging interventions for the baby before and after birth contributes to prognostic uncertainty. For clinicians who counsel families in these circumstances, determining which ones might benefit from early palliative care referral can be challenging. We assert that all women carrying a fetus diagnosed with a life-threatening condition for which comfort-focused care at birth is one ethically reasonable option ought to be offered palliative care support prenatally, regardless of the chosen plan of care. Early palliative care support can contribute to informed decision making, enhance psychological and grief support, and provide opportunities for care planning that includes ways to respect and honor the life of the fetus or baby, however long it may be.

Perceptions of a Teleophthalmology Screening Program for Diabetic Retinopathy in Adults With Type 1 and Type 2 Diabetes in Urban Primary Care Settings.

OBJECTIVES: Teleophthalmology has improved diabetic retinopathy screening, and should be expanded in urban areas, where most unscreened individuals reside. In this study we explored facilitators and barriers of teleophthalmology in primary care settings in Toronto, Canada. METHODS: Semistructured interviews were conducted with 7 health-care providers and 7 individuals with diabetes to explore their perspectives of teleophthalmology in urban primary care settings. Interview data were analyzed using interpretive thematic analysis to generate themes. RESULTS: Six themes were identified. Facilitators included patient-centred implementation, access to teleophthalmology at primary care sites and patients' trust in their providers' recommendations. Barriers included patients' lack of understanding of diabetic retinopathy and the health-care system, providers' lack of interest and the need to streamline administrative processes. CONCLUSIONS: Although teleophthalmology was well-received by patients, there was limited interest from primary care providers. Strategies for increasing uptake include increasing primary care providers' awareness of teleophthalmology's value in urban centres, improving administrative processes and centralizing patient recruitment.

Withdrawal of artificial nutrition and hydration in the neonatal intensive care unit: parental perspectives.

OBJECTIVE: To review the experience of the practice of withdrawal of artificial nutrition and hydration (WANH) and to describe parental perspectives on the process. DESIGN: A retrospective chart review and parental survey. SETTING: Tertiary level Neonatal Intensive Care Unit (NICU). PARTICIPANTS: Infants who had WANH after withdrawal of other life-sustaining treatment, and their parents. MAIN OUTCOME MEASURE: Parental perspectives on the care and process were obtained through a survey administered 1 to 4 years after the death of their infant. RESULTS: Fifteen cases (5.5% of all mortality and 0.5% of all admissions) of WANH were identified, and 10 parents participated in the survey. The median (range) gestational age was 40 weeks (31-42) and birth weight was 3409 g (2000-4640). The reason for WANH was predicted poor outcome due to severe neurological injury/disease. The median (range) time between WANH and death was 16 days (2-37). All parents reported favourable perceptions of preparation, support, communication and care. Seven parents reported concerns regarding pain experienced by their infant. Parents reported the ability to spend quality time, creating tangible memories and the virtues and professional qualities of the caregivers to be helpful, but identified that consistency and continuity of care could be improved. CONCLUSION: Within the spectrum of palliative care in neonates, WANH can be a tenable, justifiable and humane practice in the NICU.