"They were an advocate for me": A Qualitative Study Exploring Medical Student Longitudinal Relationships and Patient Well-Being.

BACKGROUND: Patient navigators, community health workers, and care management teams improve patient experience and health outcomes. Medical student involvement in these roles is limited. Evaluation of these programs focuses on the student experience with less attention to patient participants. OBJECTIVES: We sought (1) to understand the experience of being a participant in a medical education program; (2) to explore the patient-medical student relationship; and (3) to describe the impact of this relationship on patient health and well-being. DESIGN: This was a qualitative study that utilized in-depth semi-structured interviews. PARTICIPANTS: Participants were selected based on enrollment in a preceptorship program at an urban academic medical center between 2017 and 2020. Participants worked with a medical student during an 18-month period in which the medical student was embedded in a primary care medical home, serving as a health systems navigator for 1-2 medically and socially complex patients. APPROACH: Nine participants completed 1-h compensated phone interviews. This study was deemed IRB exempt. KEY RESULTS: Three themes and eight subthemes were identified, including Navigators Were Key to Accessing the System, Interpersonal Partnerships Improved Health, and Fulfillment in Teaching of Lived Experience. Navigators eased the burden of chronic illness by being a point of contact in the health system, which improved participants' overall experience. Participants also described the relationship as therapeutic, citing improvement and stability in both mental and physical health. Lastly, participants found meaning in chronic illness by teaching their students empathy. CONCLUSIONS: Longitudinal patient-medical student relationships may provide stability and health benefits. These partnerships have the possibility of adding value to patients' healthcare experiences. This study complements current literature highlighting the value of these relationships for pre-clinical medical students. As such, additional opportunities for and additional research regarding the value of longitudinal patient connection should be incorporated in undergraduate medical education.

Long-term follow-up after multilevel surgery in cerebral palsy.

INTRODUCTION: Single-event multilevel surgery (SEMLS) is frequently used to correct pathological gait patterns in children with bilateral spastic cerebral palsy (BSCP) in a single session surgery. However, in-depth long-term evaluation reports of gait outcomes are limited. Therefore, we investigated if SEMLS is able to correct lower extremity joint and pelvic angles during gait towards typically developing gait patterns (TDC) in children with BSCP, and if so, if this effect is durable over a 10-year period. MATERIALS AND METHODS: In total 13 children with BSCP GMFCS level II at time of index-surgery between the ages of 7.7-18.2 years at the time of SEMLS were retrospectively recruited. Three-dimensional gait data were captured preoperatively, as well as at short-, mid-, and long-term post-operatively, and used to analyze: movement analysis profile (MAP), gait profile score (GPS), and lower extremity joint and pelvic angles over the course of a gait cycle using statistical parametric mapping. RESULTS: In agreement with previous studies, MAP and GPS improved towards TDCs after surgery, as did knee extension during the stance phase (ɳ2 = 0.67; p < 0.001), while knee flexion in the swing phase (ɳ2 = 0.67; p < 0.001) and pelvic tilt over the complete gait cycle (ɳ2 = 0.36; p < 0.001) deteriorated; no differences were observed between follow-ups. However, further surgical interventions were required in 8 out of 13 of the participants to maintain improvements 10 years post-surgery. CONCLUSIONS: While the overall gait pattern improved, our results showed specific aspects of the gait cycle actually deteriorated post-SEMLS and that a majority of the participants needed additional surgery, supporting previous statements for the use of multilevel surgery rather than SEMLS. The results highlight that the field should not only focus on the overall gait scores when evaluating treatment outcomes but should offer additional long-term follow-up of lower extremity function.

Longitudinal Care Improves Cessation in Smokers Who Do Not Initially Respond to Treatment by Increasing Cessation Self-Efficacy, Satisfaction, and Readiness to Quit: A Mediated Moderation Analysis.

BACKGROUND: The Tobacco Longitudinal Care study was a randomized controlled trial for smoking cessation. It demonstrated that longitudinal care for smoking cessation, in which telephone-based counseling and nicotine replacement therapy were offered for 12 months, was more effective than the standard 8-week treatment. PURPOSE: This study aims to identify for whom and how longitudinal care increased the likelihood of abstinence. METHODS: Mediated moderation analyses were utilized across three time points. RESULTS: There was a trend towards smokers who did not respond to treatment (i.e., were still smoking) by 21 days being more likely to be abstinent at 6 months if they received longitudinal care rather than usual care. Similarly, those who did not respond to treatment by 3 months were more likely to be abstinent at 12 months if they received longitudinal care. At both time points, the likelihood of abstinence did not differ across treatment conditions among participants who responded to treatment (i.e., quit smoking). The effect on 6-month outcomes was mediated by satisfaction and readiness to quit. Cessation self-efficacy, satisfaction, and readiness to quit mediated the effect on 12-month outcomes. The effect of treatment condition on the likelihood of abstinence at 18 months was not moderated by response to treatment at 6 months. CONCLUSIONS: Smokers who did not respond to initial treatment benefited from longitudinal care. Differential effects of treatment condition were not observed among those who responded to early treatment. Conditional assignment to longitudinal care may be useful. Determining for whom and how interventions work over time will advance theory and practice.

Electronic reminders to facilitate longitudinal care: a mixed-methods study in general practices.

BACKGROUND: Longitudinal, patient-centered care represents a challenge for general practitioners (GPs), and in this context, reminder systems can offer targeted support. This study aimed to identify details of such reminders: (1) contents of care addressed, (2) their mode of display in the electronic health record (EHR), (3) their visual appearance, (4) personnel responsibilities for editing and applying reminders, and (5) use of reminders for patient recall. METHODS: This mixed-methods study comprised (1) a cross-sectional survey among 185 GP practices from a German university network, and (2) structured observations of reminder utilization in six practices based on a clinical vignette describing a multimorbid senior with 26 care needs. Descriptive statistics were performed for survey data. The practice observations were analyzed by portraying different types of reminders. RESULTS: Seventy-three of 185 practices completed the survey (39.5%): 98.6% reported using reminders in the EHR. Frequent care contents addressed were allergies/adverse drug events (95.8%), preventive measures (93.1%), participation in disease management programs (87.5%), chronic diseases (75.0%), and upcoming vaccinations (68.1%). Practice observations showed a variety of mainly self-configured reminders. In a patients' EHR, information was displayed (1) compiled in a separate field, (2) scattered throughout the EHR, and/or (3) in a pop-up window. The visual appearance of electronic reminders varied: (1) colored fields with short text, (2) EHR entries and/or billing codes in pre-defined colors, (3) abbreviations within the treatment documentation, (4) symbols within the treatment documentation, (5) symbols linked to free text fields, and (6) traffic light schemes. Five practices self-designed reminders 'as needed'; one practice applied an EHR-embedded, pre-defined reminder system. Practices used reminders for a mean of 13.3 of the 26 aspects of care detailed in the clinical vignette (range: 9-21; standard deviation (SD): 4.3). Practices needed 20-35 min (mean: 27.5; SD: 6.1) to retrieve the information requested. CONCLUSIONS: Most GP practices use self-designed, visual reminders for some aspects of care, yet data-based, sophisticated solutions are needed to improve longitudinal care. TRIAL REGISTRATION: German Clinical Trials Register, unique identifying number: DRKS00008777 (date of registration: 06/19/2015).

Otolaryngic Allergy Patient Journey Mapping: A Framework for Allergy Immunotherapy Adherence.

OBJECTIVES: Allergen-specific immunotherapy (AIT) is an effective treatment for allergic disease but requires long treatment duration and premature cessation is of significant concern. Drivers of premature cessation remain poorly understood and no predictive models currently exist. We hypothesized that a novel patient journey map and de novo real-time patient electronic health status instruments (eHSIs) could effectively capture patient perceived cost, commitment, and treatment benefit to identify individual patients at risk for premature AIT cessation. STUDY TYPE: Cross-Sectional Observational Study. METHODS: A single Otolaryngology allergy immunotherapy (AIT) program was studied over 5 years. Instances of premature cessation were classified. An Otolaryngic Allergy Patient Journey Map was developed to identify and target automated, real-time, patient-reported, electronic health status instrument responses. RESULTS: Data capture was robust, with 61,406 data points collected and an eHSI survey completion rate of 81.3%. However, based on correlation analysis and logistic regression alone, real-time eHSI responses were not predictive of individual patient premature AIT cessation. A total of 597 AIT patients discontinued treatment prematurely: 64.4% stopping within the first year. Specifically, 74.0%-76.3% of subcutaneous AIT patients and 88.5%-100% of sublingual AIT patients did not complete the minimum recommended treatment duration of 3 years. CONCLUSION: Patient journey mapping can aid in the design of longitudinal care models and patient engagement strategies. Yet, eHSI patient responses of perception of AIT cost, benefit, and convenience did not correlate with the likelihood of premature treatment cessation. Our imperfect clinical intuition may not account for the dynamic drivers of premature AIT discontinuation. Future development of predictive tools feed by large patient-centric data sets may be incorporated into routine practice resulting in delivery of a more streamlined and personalized approach with reduced premature AIT cessation, improved outcomes, and reduced health care expenditures. LEVEL OF EVIDENCE: NA Laryngoscope, 2024.

Exploring placement stability for children in out-of-home care in England: a sequence analysis of longitudinal administrative data.

BACKGROUND: To monitor stability of care, the proportion of children in England who have experienced three or more placements in the preceding 12-month period is published in government statistics. However, these annual snapshots cannot capture the complexity and heterogeneity of children's longitudinal care histories. OBJECTIVE: To describe the stability of care histories from birth to age 18 for children in England using a national administrative social care dataset, the Children Looked After return (CLA). PARTICIPANTS AND SETTING: We analyzed CLA data for a large, representative sample of children born between 1992 and 1994 (N = 16,000). METHODS: Using sequence analysis methods, we identified distinct patterns of stability, based on the number, duration, and timing of care placements throughout childhood. RESULTS: Although care histories were varied, six distinct patterns of stability were evident including; adolescent 1st entries (17.6%), long-term complex care (13.1%) and early intervention (6.9%). Overall, most children (58.4%) had a care history that we classified as shorter term care with an average of 276 days and 2.48 placements in care throughout childhood. Few children (4.0%) had a care history that could be described as long-term stable care. CONCLUSIONS: Longitudinal analyses of administrative data can refine our understanding of how out-of-home care is used as a social care intervention. Sequence analysis is a particularly useful tool for exploring heterogeneous and complex care histories. Considering out-of-home care histories from a life course perspective over the entire childhood period could enable service providers to better understand and address the needs of looked after children.

Improving health care transition and longitudinal care for adolescents and young adults with hydrocephalus: report from the Hydrocephalus Association Transition Summit.

The health care needs of children with hydrocephalus continue beyond childhood and adolescence; however, pediatric hospitals and pediatric neurosurgeons are often unable to provide them care after they become adults. Each year in the US, an estimated 5000-6000 adolescents and young adults (collectively, youth) with hydrocephalus must move to the adult health care system, a process known as health care transition (HCT), for which many are not prepared. Many discover that they cannot find neurosurgeons to care for them. A significant gap in health care services exists for young adults with hydrocephalus. To address these issues, the Hydrocephalus Association convened a Transition Summit in Seattle, Washington, February 17-18, 2017.The Hydrocephalus Association surveyed youth and families in focus groups to identify common concerns with HCT that were used to identify topics for the summit. Seven plenary sessions consisted of formal presentations. Four breakout groups identified key priorities and recommended actions regarding HCT models and practices, to prepare and engage patients, educate health care professionals, and address payment issues. The breakout group results were discussed by all participants to generate consensus recommendations.Barriers to effective HCT included difficulty finding adult neurosurgeons to accept young adults with hydrocephalus into their practices; unfamiliarity of neurologists, primary care providers, and other health care professionals with the principles of care for patients with hydrocephalus; insufficient infrastructure and processes to provide effective HCT for youth, and longitudinal care for adults with hydrocephalus; and inadequate compensation for health care services.Best practices were identified, including the National Center for Health Care Transition Improvement's "Six Core Elements of Health Care Transition 2.0"; development of hydrocephalus-specific transition programs or incorporation of hydrocephalus into existing general HCT programs; and development of specialty centers for longitudinal care of adults with hydrocephalus.The lack of formal HCT and longitudinal care for young adults with hydrocephalus is a significant health care services problem in the US and Canada that professional societies in neurosurgery and neurology must address. Consensus recommendations of the Hydrocephalus Association Transition Summit address 1) actions by hospitals, health systems, and practices to meet local community needs to improve processes and infrastructure for HCT services and longitudinal care; and 2) actions by professional societies in adult and pediatric neurosurgery and neurology to meet national needs to improve processes and infrastructure for HCT services; to improve training in medical and surgical management of hydrocephalus and in HCT and longitudinal care; and to demonstrate the outcomes and effectiveness of HCT and longitudinal care by promoting research funding.

Management of Charcot-Marie-Tooth disease: improving long-term care with a multidisciplinary approach.

Charcot-Marie-Tooth (CMT) disease is the most common inherited neuropathy and one of the most common inherited diseases in humans. The diagnosis of CMT is traditionally made by the neurologic specialist, yet the optimal management of CMT patients includes genetic counselors, physical and occupational therapists, physiatrists, orthotists, mental health providers, and community resources. Rapidly developing genetic discoveries and novel gene discovery techniques continue to add a growing number of genetic subtypes of CMT. The first large clinical natural history and therapeutic trials have added to our knowledge of each CMT subtype and revealed how CMT impacts patient quality of life. In this review, we discuss several important trends in CMT research factors that will require a collaborative multidisciplinary approach. These include the development of large multicenter patient registries, standardized clinical instruments to assess disease progression and disability, and increasing recognition and use of patient-reported outcome measures. These developments will continue to guide strategies in long-term multidisciplinary efforts to maintain quality of life and preserve functionality in CMT patients.

A patient-centered longitudinal care plan: vision versus reality.

OBJECTIVE: As healthcare systems and providers move toward meaningful use of electronic health records, longitudinal care plans (LCPs) may provide a means to improve communication and coordination as patients transition across settings. The objective of this study was to determine the current state of communication of LCPs across settings and levels of care. MATERIALS AND METHODS: We conducted surveys and interviews with professionals from emergency departments, acute care hospitals, skilled nursing facilities, and home health agency settings in six regions in the USA. We coded the transcripts according to the Agency for Healthcare Research and Quality (AHRQ) 'Broad Approaches' to care coordination to understand the degree to which current practice meets the definition of an LCP. RESULTS: Participants (n=22) from all settings reported that LCPs do not exist in their current state. We found LCPs in practice, and none of these were shared or reconciled across settings. Moreover, we found wide variation in the types and formats of care plan information that was communicated as patients transitioned. The most common formats, even when care plan information was communicated within the same healthcare system, were paper and fax. DISCUSSION: These findings have implications for data reuse, interoperability, and achieving widespread adoption of LCPs. CONCLUSIONS: The use of LCPs to support care transitions is suboptimal. Strategies are needed to transform the LCP from vision to reality.