School Nurses Practices Promoting Self-Management and Healthcare Transition Skills for Adolescents with Chronic Conditions in Urban Public Schools: A Mixed Methods Study

Background: Adolescents and young adults (AYA) with chronic conditions should acquire self-management skills as part of their healthcare transition (HCT) from pediatric to adult-focused care. HCT/self-management skills have the potential to help mitigate health disparities among minority AYA with chronic conditions. This study investigated school nurses’ practices promoting HCT/self-management skills in urban public schools. Methods: Seventy-nine nurses from three urban school districts in Massachusetts completed a survey of 32 Likert-type questions on HCT/self-management skills, eight demographic questions, and five open-ended practice questions assessing how often they have asked students with chronic conditions about HCT/self-management skills, based on the UNC TRxANSITION IndexTM. Results: Among the 79 school nurses who participated (response rate 76%), 67% never or rarely assessed students’ knowledge of HCT/self-management, and 90% would use a tool that promotes/measures HCT/self-management skills. Conclusion: In our study sample, most school nurses acknowledged the importance of assessing HCT/self-management skills. The majority favored using a tool to promote these skills.

Healthcare Transition from Pediatric- to Adult-Focused Care in X-Linked Hypophosphatemia: Review and Expert Consensus

Context X-linked hypophosphatemia (XLH) is an inherited skeletal disorder that can lead to lifelong deleterious musculoskeletal and functional consequences. Although often perceived as a childhood condition, both children and adults experience the negative impacts of XLH. Adolescents and young adults (AYA) benefit from effective healthcare transition preparation to support the transfer from pediatric- to adult-focused care. Whereas transition timelines, milestones, and educational tools exist for some chronic conditions, they do not meet the unique needs of patients with XLH. Evidence Acquisition To produce the first expert recommendations on healthcare transition preparation for AYA with XLH developed by clinical care investigators and transition experts, a formal literature search was conducted and discussed in an advisory board meeting in July 2020. A modified Delphi method was used to refine expert opinion and facilitate a consensus position. Evidence Synthesis We identified the need for psychosocial and access-related resources for disease education, genetic counselling, family planning, and AYA emancipation from caregiver-directed care. Additionally, we recognized that it is necessary to facilitate communication with patients through channels familiar and accessible to AYA and teach patients to advocate for their healthcare/access to specialists. Conclusions Clear healthcare transition preparation guidelines and treatment-related goals are defined. Individualized timelines and practical strategies for healthcare transition preparation are proposed to optimize health outcomes resulting from continuous clinical care throughout the patient lifecycle. We provide an expert consensus statement describing a tailored healthcare transition preparation program specifically for AYA with XLH to aid in effective transfer from pediatric- to adult-focused healthcare.

Estimation of age of transition from children's to adult healthcare for young people with long term conditions using linked routinely collected healthcare data

IntroductionHealthcare transitions, including from paediatric to adult services, can be disruptive and cause a lack of continuity in care. Existing research on the paediatric-adult healthcare transition often uses a simple age cut-off to assign transition status. This risks misclassification bias, reducing observed changes at transition (adults are included in the paediatric group and vice versa) possibly to differing extents between groups that transition at different ages. ObjectiveTo develop and assess methods for estimating the transition point from paediatric to adult healthcare from routine healthcare records. MethodsA retrospective cohort of young people (12 to 23 years) with long term conditions was constructed from linked primary and secondary care data in England. Inpatient and outpatient records were classified as paediatric or adult based on treatment and clinician specialities. Transition point was estimated using three methods based on record classification (First Adult: the date of first adult record; Last Paediatric: date of last paediatric record; Fitted: a date determined by statistical fitting). Estimated transition age was compared between methods. A simulation explored impacts of estimation approaches compared to a simple age cut-off when assessing associations between transition status and healthcare events. ResultsSimulations showed using an age-based cut-off at 16 or 18 years as transition point, common in research on transition, may underestimate transition-associated changes. Many health records for those aged 14 years were classified as adult, limiting utility of the First Adult approach. The Last Paediatric approach is least sensitive to this possible misclassification and may best reflect experience of the transition. ConclusionsEstimating transition point from routine healthcare data is possible and offers advantages over a simple age cut-off. These methods, adapted as necessary for data from other countries, should be used to reduce risk of misclassification bias in studies of transition in nationally representative data.

Creating person-al space for unspoken voices during diagnostic medical imaging examinations: a qualitative study

Background There is emerging interest in person-centred care within a short-lived yet complex medical imaging encounter. This study explored this event from the viewpoint of patients referred for an imaging examination, with a focus on the person and their person-al space. Methods We used convenience sampling to conduct semi-structured interviews with 21 patients in a private medical imaging practice in Australia. The first phase of data analysis was conducted deductively, using the six elements of the person-centred, patient-journey framework of the Australian Commission on Safety and Quality in Healthcare: transition in; engagement; decisions; well-being; experience; and transition out. This was followed by inductive content analysis to identify overarching themes that span a patient’s journey into, through and out of an imaging encounter. Results The transition-in phase began with an appointment and the first point of contact with the imaging department at reception. Engagement focused on patient-radiographer interactions and explanations to the patient on what was going to happen. Decisions related primarily to radiographers’ decisions on how to conduct a particular examination and how to get patient cooperation. Participants’ well-being related to their appreciation of gentle treatment; they also referred to past negative experiences that had made a lasting impression. Transitioning out of the imaging encounter included the sending of the results to the referring medical practitioner. Person-al vulnerabilities emerged as a cross-cutting theme. Patients’ vulnerability, for which they needed reassurance, pertained to uncertainties about the investigation and the possible results. Healthcare professionals were vulnerable because of patient expectations of a certain demeanour and of pressure to perform optimal quality investigations. Lastly, patients’ personal lives, concerns and pressures – their person-al ‘baggage’ – shaped their experience of the imaging encounter. Conclusion To add value to the quality of the service they deliver, radiography practitioners should endeavour to create a person-al space for clients. Creating these spaces is complex as patients are not in a position to judge the procedures required by technical imaging protocols and the quality control of equipment. A reflective tool is proposed for radiographers to use in discussions with their team and its leaders on improving person-centred care and the quality of services in their practice.