"Once I take that one bite": the consideration of harm reduction as a strategy to support dietary change for patients with diabetes.

BACKGROUND: Despite well-established guidelines to treat diabetes, many people with diabetes struggle to manage their disease. For many, this struggle is related to challenges achieving nutrition-related lifestyle changes. We examined how people with diabetes describe barriers to maintaining a healthy diet and considered the benefits of using a harm reduction approach to assist patients to achieve nutrition-related goals. METHODS: This is a secondary analysis of 89 interviews conducted with adults who had type 1 or type 2 diabetes. Interviews were analyzed using a content analysis approach. Themes regarding food or diet were initially captured in a "food" node. Data in the food node were then sub-coded for this analysis, again using a content analysis approach. RESULTS: Participants frequently used addiction language to talk about their relationship with food, at times referring to themselves as "an addict" and describing food as "their drug." Participants perceived their unhealthy food choices either as a sign of weakness or as "cheating." They also identified food's ability to comfort them and an unwillingness to change as particular challenges to sustaining a healthier diet. CONCLUSION: Participants often described their relationship with food through an addiction lens. A harm reduction approach has been associated with positive outcomes among those with substance abuse disorder. Patient-centered communication incorporating the harm reduction model may improve the patient-clinician relationship and thus improve patient outcomes and quality-of-life while reducing health-related stigma in diabetes care. Future work should explore the effectiveness of this approach in patients with diabetes. TRIAL REGISTRATION: Registered on ClinicalTrials.gov, NCT02792777. Registration information submitted 02/06/2016, with the registration first posted on the ClinicalTrials.gov website 08/06/2016. Data collection began on 29/04/2016.

Cancer screening, prevention, and treatment in people with mental illness.

People with mental illness die decades earlier in the United States compared with the general population. Most of this disparity is related to preventable and treatable chronic conditions, with many studies finding cancer as the second leading cause of death. Individual lifestyle factors, such as smoking or limited adherence to treatment, are often cited as highly significant issues in shaping risk among persons with mental illness. However, many contextual or systems-level factors exacerbate these individual factors and may fundamentally drive health disparities among people with mental illness. The authors conducted an integrative review to summarize the empirical literature on cancer prevention, screening, and treatment for people with mental illness. Although multiple interventions are being developed and tested to address tobacco dependence and obesity in these populations, the evidence for effectiveness is quite limited, and essentially all prevention interventions focus at the individual level. This review identified only one published article describing evidence-based interventions to promote cancer screening and improve cancer treatment in people with mental illness. On the basis of a literature review and the experience and expertise of the authors, each section in this article concludes with suggestions at the individual, interpersonal, organizational, community, and policy levels that may improve cancer prevention, screening, and treatment in people with mental illness.

Acceptability of Telemedicine in a Geriatric Outpatient Practice During the COVID-19 Pandemic.

Background: Telemedicine utilization has increased dramatically during the COVID pandemic. Few studies have evaluated the use and acceptability of telemedicine in older populations. This study examined the use and acceptability of telemedicine with older adults in an urban, geriatric practice. Methods: An anonymous survey was sent to patients seen at an urban, geriatric practice using MyChart in EPIC in March 2021. This population of patients is 55 years and older, 50% Black, 40% white, 3% Latino, 3% Asian, and 4% other. This panel is comprised of 71% Medicare, 23% non-Medicare/non-Medicaid, and 6% Medicaid. The total panel of patients includes ∼1,400 patients. The percent of patients on MyChart at the time of the survey was 78%. Thus, about 1,092 patients received the survey. Results: Of the 1,092 patients who received the survey, 247 (22.6%) responded. Around 80.37% of respondents rated their overall experience with telemedicine as good or excellent. Theme areas emerged around the advantages and disadvantages of telemedicine. A majority (70.28%) of respondents rated themselves as Somewhat Confident to Very Confident in use of telemedicine without family/friend assistance. A majority (74.16%) of respondents stated they plan to use telemedicine again. Conclusions: This survey demonstrated the feasibility and acceptability of telemedicine in an urban, geriatric population. A limit to this study is that the survey was administered on-line, so that participants may be biased regarding use of online technology. However, this study showed that the vast majority of older adults were confident in using telemedicine as an alternative to in-person visits during the COVID pandemic and plan on using it again.

Burnout and Commitment to Primary Care: Lessons From the Early Impacts of COVID-19 on the Workplace Stress of Primary Care Practice Teams.

PURPOSE: The COVID-19 pandemic has dramatically affected all areas of health care. Primary care practices are on the front lines for patients seeking health care during this period. Understanding clinical and administrative staff members' strategies for managing the broad-ranging changes to primary care service delivery is important for the support of workforce well-being, burnout, and commitment to primary care. METHODS: Thirty-three staff members from 8 practices within a single health care system completed short, semistructured interviews from May 11, 2020 to July 20, 2020. Interviews were coded using a combination of conventional and directed content analysis. RESULTS: Themes emerged from the data that mapped onto the Job Demands-Control-Social Support model. Participants reported that every aspect of primary care service delivery needed to be adapted for COVID-19, which increased their job demands significantly. Several also described pride in their development of new skills, and in most interviews, they expressed that the experience brought staff together. Staff engaged in active cognitive reframing of events during the interviews as they coped with increased workplace stress. However, as the pandemic changed from an acute stress event to a chronic stressor, staff were more likely to indicate signs of burnout. CONCLUSIONS: Primary care teams absorbed tremendous burdens during COVID-19 but also found that some stress was offset by increased support from management and colleagues, belief in their own necessity, and new development opportunities. Considering high prepandemic strain levels, the ability of primary care teams to persist under these conditions might erode as the crisis becomes an enduring challenge.

Patient and provider prediabetes knowledge, attitudes, and behavior in a large urban family medicine practice.

Context: One-third of American adults have prediabetes. However, only 11% are aware of their condition, and they often do not receive prediabetes education or management. Prior studies have indicated knowledge gaps among primary care providers and patients on prediabetes management. Objective: To understand family medicine providers' and patients' attitudes, knowledge, and behaviors regarding prediabetes and its management to inform a prediabetes management intervention. Study Design: Cross-sectional surveys. Setting: A large academic family medicine practice in downtown Philadelphia with 30,000 patients making 80,000 visits annually. Population studied: Family medicine providers (attending physicians, nurse practitioners, residents) and adult patients seen within the last year, with HbA1c in the last 6 months between 5.7-6.4% (excluding pregnant, diabetes diagnosis). Instruments: Provider survey asking demographics, knowledge, attitudes, management, DPP awareness, barriers to prediabetes treatment, and open-ended question on how the practice could improve prediabetes management. Patient survey asking demographics, awareness of diagnosis and risk, knowledge, attitudes, experiences with DPP, prediabetes experiences with PCP, and same open-ended question as provider survey. Provider survey distributed via email; patient survey via Epic MyChart patient portal. Outcome Measures: Descriptive statistics for all quantitative survey items; thematic analysis of open-ended responses. Results: Fifty-four providers and 148 patients completed the surveys (57% and 16.5% response rates, respectively). Nearly all providers (96%) felt that prediabetes screening and management is important but most (74%) prescribe metformin to ≤ 25% of eligible patients. Over half (56%) were unaware of DPP, and 52% of those aware of DPP did not know how to refer a patient. Over half (59%) of patients reported having been told they have prediabetes and 84% thought diet and lifestyle changes were effective treatment, but 65% were unaware of medication options and only 5% had been referred to DPP. In open-ended responses, providers requested more nutrition counseling and an improved DPP referral process; patients also requested nutrition counseling and classes. Conclusions: Providers and patients saw prediabetes as important but reported knowledge and management gaps, particularly for metformin and DPP, and requested additional practice resources.

Patient Markers of Successful Diabetes Management.

PURPOSE: For individuals with diabetes, diabetes health status may not align with A1C targets. Patients may use nonclinical targets when assessing their diabetes management success. Identifying these targets is important in developing patient-centered management plans. The purpose of this study was to identify patient markers of successful diabetes management among patients in an urban academic health system. METHODS: A secondary analysis of semistructured interviews was completed with 89 adults with type 1 or type 2 diabetes. Participants had a recent diabetes-related emergency department (ED) visits or hospitalization or were primary care patients with an A1C >7.5%. Interviews were conducted to saturation. Demographic data were collected via self-report and electronic medical records. Interviews were analyzed using conventional content analysis. This analysis focused on patient perceptions of successful management coded to "measuring management success." RESULTS: Although most participants cited A1C or blood glucose as a marker of successful diabetes management, they had varied understanding of these metrics. Most used a combination of targets from the following categories: 1) A1C, blood glucose, and numbers; 2) engagement in medical care; 3) taking medication and medication types; 4) symptoms; 5) diet, exercise, and weight; and 6) stress management and social support. CONCLUSION: Individuals not meeting glycemic goals and/or with recent diabetes-related ED visits or hospitalizations had varied understanding of A1C and blood glucose targets. They use multiple additional markers of successful management and had a desire for management discussions that incorporate these markers. These measures should be incorporated into their care plans along with clinical targets.

Mask Use During COVID-19: A Social-Ecological Analysis.

To limit the spread of coronavirus disease 2019 (COVID-19), the Centers for Disease Control and Prevention issued recommendations that individuals wear face masks in public. Despite these recommendations, the individual decision to adhere and wear a mask may not be a simple decision. In this article, we examine the decision to wear a mask from a social-ecological perspective. Through critical analysis of societal, interpersonal and community, and intrapersonal influences, it is clear that the decision to wear a mask is multifaceted and influenced by constructs including public health recommendations and government mandates, racism and cultural norms, geography, household income, age, and personal attitudes. Understanding the multifactorial influences on mask wearing during COVID-19 is crucial for informing the creation and distribution of inclusive public health messaging regarding mask wearing now in the midst of an unprecedented health crisis, and in future unforeseen public health emergencies.

Retention of Patients With Multiple Vulnerabilities in a Federally Qualified Health Center Buprenorphine Program: Pennsylvania, 2017-2018.

Objectives. To describe and report initial outcomes of a low-threshold, group-based primary care medication for opioid use disorder (OUD) program in a federally qualified health center.Methods. We performed a retrospective chart review of patients enrolled in the program from October 4, 2017, to October 3, 2018, in Philadelphia, Pennsylvania. The main outcome measure was time retained in treatment, defined as time from treatment initiation to unplanned treatment termination. Secondary outcomes were the relationships between treatment retention and cocaine use or housing status. We analyzed retention in treatment using Kaplan-Meier survival estimates.Results. The 3- and 6-month retention rates were 82% and 63%, respectively. The log-rank test showed no significant differences for comparisons between homeless versus not homeless (P = .25) and cocaine use versus no cocaine use (P = .12).Conclusions. The medication for OUD program engaged a large number of patients from marginalized groups. Three- and 6-month retention rates were comparable with those reported of other federally qualified health center populations.Public Health Implications. Integrating treatment of OUD into primary care shows promise for increasing access to and retention in medication for OUD services. The federally qualified health center payment structure supports the sustainability of the group visit model.

"I had no other choice but to catch it too": the roles of family history and experiences with diabetes in illness representations.

BACKGROUND: A family history of diabetes and family members' experiences with diabetes may influence individuals' beliefs and expectations about their own diabetes. No qualitative studies have explored the relationship between family history and experiences and individuals' diabetes illness representations. METHODS: Secondary data analysis of 89 exploratory, semi-structured interviews with adults with type 1 or type 2 diabetes seeking care in an urban health system. Participants had a recent diabetes-related ED visit/hospitalization or hemoglobin A1c > 7.5%. Interviews were conducted until thematic saturation was achieved. Demographic data were collected via self-report and electronic medical record review. Interviews were audio-recorded, transcribed, and coded using a conventional content analysis approach. References to family history and family members' experiences with diabetes were analyzed using selected domains of Leventhal's Common Sense Model of Self-Regulation. RESULTS: Participants cited both genetic and behavioral family history as a major cause of their diabetes. Stories of relatives' diabetes complications and death figured prominently in their discussion of consequences; however, participants felt controllability over diabetes through diet, physical activity, and other self-care behaviors. CONCLUSIONS: Findings supported an important role of family diabetes history and experience in development of diabetes illness representations. Further research is needed to expand our understanding of the relationships between these perceptions, self-management behaviors, and outcomes. Family practice providers, diabetes educators and other team members should consider expanding assessment of current family structure and support to also include an exploration of family history with diabetes, including which family members had diabetes, their self-care behaviors, and their outcomes, and how this history fits into the patient's illness representations.

What Do Adults Think About Their Adverse Childhood Experiences (ACEs), and Does It Matter?

We examined the self-reported adulthood impact of adverse childhood experiences (ACE's), including both the amount (magnitude) and type (valence positive or negative) of impact reported, in order to characterize variability in impact ratings, as well as to quantify their predictive ability with respect to health outcomes. We descriptively characterized impact by type of event and analyzed associations between impact ratings and demographic characteristics of respondents to explore resilience. We also analyzed the relationships between impact ratings and health outcomes. We found that, while there was wide variability in impact ratings, emotional abuse was rated as the most impactful in magnitude, and sexual and emotional abuse were rated as the most negatively impactful in terms of valence. We further found that impact ratings are predictive of adult health outcomes above and beyond the experience of the events alone. We conclude that perceived impact is a potentially important variable to include when self-reported ACEs are assessed.

The power of the group: comparison of interviews and group concept mapping for identifying patient-important outcomes of care.

BACKGROUND: Data are limited regarding how to effectively and efficiently identify patient priorities for research or clinical care. Our goal was to compare the comprehensiveness and efficiency of group concept mapping (GCM), a group participatory method, to interviews for identifying patient goals when seeking care. METHODS: We engaged patients with moderately- to poorly-controlled diabetes mellitus in either GCM or an individual interview. The primary outcome was the comprehensiveness of GCM brainstorming (the first stage of GCM) as compared to interviews for eliciting patient-important outcomes (PIOs) related to seeking care. Secondary outcomes included 1) comprehensiveness of GCM brainstorming and interviews compared to a master list of PIOs and 2) efficiency of GCM brainstorming, the entire GCM process and interviews. RESULTS: We engaged 89 interview participants and 52 GCM participants (across 3 iterations of GCM) to identify outcomes most important to patients when making decisions related to diabetes management. We identified 26 PIOs in interviews, 33 PIOs in the first GCM brainstorming session, and 38 PIOs across all three GCM brainstorming sessions. The initial GCM brainstorming session identified 77% (20/26) of interview PIOs, and all 3 GCM brainstorming sessions combined identified 88% (23/26). When comparing GCM brainstorming and interviews to the master list of PIOs, the initial GCM brainstorming sessions identified 80% (33/41), all 3 GCM brainstorming sessions identified 93% (38/41) and interviews identified 63% (26/41) of all PIOs. Compared to interviews, GCM brainstorming required less research team time, more patient time, and had a lowest cost. The entire GCM process still required less research team time than interviews, though required more patient time and had a higher cost than interviews. CONCLUSIONS: GCM brainstorming is a powerful tool for effectively and efficiently identifying PIOs in certain scenarios, though it does not provide the breadth and depth of individual interviews or the higher level conceptual organization of the complete process of GCM. Selection of the optimal method for patient engagement should include consideration of multiple factors including depth of patient input desired, research team expertise, resources, and the population to be engaged. TRIAL REGISTRATION: Registered on ClinicalTrials.gov , NCT02792777. Registration information submitted 6/2/2016, with the registration first posted on the ClinicalTrials.gov website 6/8/2016. Data collection began on 4/29/2016.

The feasibility of a group stress management Liver SMART intervention for patients with end-stage liver disease: A pilot study.

OBJECTIVE: Structured, empirically supported psychological interventions are lacking for patients who require organ transplantation. This stage IA psychotherapy development project developed and tested the feasibility, acceptability, tolerability, and preliminary efficacy of an 8-week group cognitive behavioral stress management intervention adapted for patients with end-stage liver disease awaiting liver transplantation. METHOD: Twenty-nine English-speaking United Network for Organ Sharing-registered patients with end-stage liver disease from a single transplantation center enrolled in 8-week, group cognitive-behavioral liver stress management and relaxation training intervention adapted for patients with end-stage liver disease. Patients completed pre- and postintervention surveys that included the Beck Depression Inventory II and the Beck Anxiety Inventory. Feasibility, acceptability, tolerability, and preliminary efficacy were assessed.ResultAttendance rate was 69.40%. The intervention was rated as "good" to "excellent" by 100% of participants who completed the postintervention survey in teaching them new skills to relax and to cope with stress, and by 94.12% of participants in helping them feel supported while waiting for a liver transplant. No adverse events were recorded over the course of treatment. Attrition was 13.79%. Anxious and depressive symptoms were not statistically different after the intervention.Significance of resultsThe liver stress management and relaxation training intervention is feasible, acceptable, and tolerable to end-stage liver disease patients within a transplant clinic setting. Anxious and depressive symptoms remained stable postintervention. Randomized controlled trials are needed to study the intervention's effectiveness in this population.

The effect of diabetes self-management education on HbA1c and quality of life in African-Americans: a systematic review and meta-analysis.

BACKGROUND: Type 2 diabetes presents a major morbidity and mortality burden in the United States. Diabetes self-management education (DSME) is an intervention associated with improved hemoglobin A1c(HbA1c) and quality of life(QOL), and is recommended for all individuals with type 2 diabetes. African-Americans have disproportionate type 2 diabetes morbidity and mortality, yet no prior meta-analyses have examined DSME outcomes exclusively in this population. This systematic review and meta-analysis examined the impact of DSME on HbA1c and QOL in African-Americans compared to usual care. METHODS: Randomized controlled trials, cluster-randomized trials, and quasi-experimental interventions were included. 352 citations were retrieved; 279 abstracts were reviewed, and 44 full-text articles were reviewed. Fourteen studies were eligible for systematic review and 8 for HbA1c meta-analysis; QOL measures were too heterogeneous to pool. Heterogeneity of HbA1c findings was assessed with Cochran's Q and I2. RESULTS: HbA1c weighted mean difference between intervention and usual care participants was not significant: - 0.08%[- 0.40-0.23];χ2 = 84.79 (p < .001), I2 = 92%, (n = 1630). Four of five studies measuring QOL reported significant improvements for intervention participants. CONCLUSIONS: Meta-analysis results showed non-significant effect of DSME on HbA1c in African-Americans. QOL did show improvement and is an important DSME outcome to measure in future trials. Further research is needed to understand effectiveness of DSME on HbA1c in this population. TRIAL REGISTRATION: PROSPERO registration: CRD42017057282 .

Separation, banking, and quality control of peripheral blood mononuclear cells from whole blood of melanoma patients.

Peripheral blood mononuclear cells (PBMCs) are essential to the study of autoimmune, infectious, parasitic diseases, and cancer. In the rapidly growing field of cancer immunology, cellular phenotyping provides critical information about patient responses to treatments and treatment efficacies. Notably, the evaluation of T cell based therapies relies on the isolation of highly viable CD3+ T cell, CD4+ Helper T cell, and CD8+ Cytotoxic T cell populations before and during patient treatments. Cryopreservation of PBMC populations allows researchers to thaw and characterize clinical samples by flow cytometry, mass cytometry, sequencing, etc. in a high-throughput manner and in batches. Therefore, it is important to separate and bank an abundance of robust circulating immune cells. Here, we report our internal protocols for the high-quality separation, banking, and thawing of clinically relevant PBMC populations. We present quality control data from 11 melanoma patients and characterize their CD3+, CD4+, and CD8+ T cells by 4-color flow cytometry.

Immunotherapy with single agent nivolumab for advanced leiomyosarcoma of the uterus: Results of a phase 2 study.

BACKGROUND: Immunotherapy has changed the therapeutic landscape in oncology. Advanced uterine leiomyosarcoma (ULMS) remains an incurable disease in most cases, and despite new drug approvals, improvements in overall survival have been modest at best. The goal of this study was to evaluate programmed-death 1 (PD-1) inhibition with nivolumab in this patient population. METHODS: This single-center phase 2 trial completed enrollment between May and October 2015. Patients received 3 mg/kg of intravenous nivolumab on day 1 of each 2-week cycle until disease progression or unacceptable toxicity. The primary endpoint was objective response rate. We assessed PD-1, PD-ligand 1 (PD-L1), and PD-L2 expression in archival tumor samples and variations in immune-phenotyping of circulating immune cells during treatment. RESULTS: Twelve patients were enrolled in the first stage of the 2-stage design. A median of 5 (range, 2-6) 2-week cycles of nivolumab were administered. Of the 12 patients, none responded to treatment. The overall median progression-free survival was 1.8 months (95% confidence interval, 0.8-unknown). The study did not open the second stage due to lack of benefit as defined by the statistical plan. Archival samples were available for 83% of patients. PD-1 (>3% of cells), PD-L1, and PD-L2 (>5% and >10% of tumor cells, respectively) expression were observed in 20%, 20%, and 90% of samples, respectively. No significant differences were observed between pre- and posttreatment cell phenotypes. CONCLUSION: Single-agent nivolumab did not demonstrate a benefit in this cohort of previously treated advanced ULMS patients. Further biomarker-driven approaches and studies evaluating combined immune checkpoint-modulators should be considered. Cancer 2017;123:3285-90. © 2017 American Cancer Society.

Development of the US English version of the phenylketonuria - quality of life (PKU-QOL) questionnaire.

BACKGROUND: Phenylketonuria (PKU) is a rare genetic disorder caused by a defect in the metabolism of phenylalanine (PHE) resulting in elevated blood and brain PHE levels, and leading to cognitive, emotional, and psychosocial problems. The phenylketonuria - quality of life (PKU-QOL) questionnaire was the first self-administered disease-specific instrument developed to assess the impact of PKU and its treatment on the health-related quality of life (HRQL) of patients and their caregivers. Available in four versions (child, adolescent, adult and parent), the PKU-QOL was simultaneously developed and validated in seven countries [i.e., France, Germany, Italy, The Netherlands, Spain, Turkey and the United Kingdom (UK)]. The objectives of our study were to develop and linguistically validate the PKU-QOL questionnaire for use in the United States (US). METHODS: The UK versions served as a basis for the development of the US English PKU-QOL questionnaire. The linguistic validation process consisted of 4 steps: 1) adaptation of the UK versions into US English by a translator native of US English and living in the US; 2) a clinician review; 3) cognitive interviews with patients and caregivers to test the appropriateness, understandability and clarity of the US translations; and 4) two proof-readings. RESULTS: The adaptation from UK to US English revealed the usual syntactic and idiomatic differences between the two languages, such as differences in: 1) Spelling, e.g., "dietician" (UK) vs. "dietitian" (US), or "mum" (UK) vs. "mom" (US); 2) Syntax or punctuation; and 3) Words/expressions use, e.g., "holidays" (UK) vs. "vacation" (US), or "biscuits" (UK) vs. "crackers" (US). The major issue was cultural, and consisted of using a different terminology to describe PKU treatment throughout the questionnaires. The clinician, with the patients and the caregivers, during the interviews suggested to replace "supplement and amino-acid mixture" or "supplements" with "medical formula." This wording was later changed to "medical food" to be consistent with the terminology used in current US published guidelines. CONCLUSIONS: The translation of the UK English PKU-QOL questionnaire into US English did not raise critical semantic and cultural issues. The PKU-QOL will be valuable for US healthcare providers in individualizing treatment and managing patients with PKU.

Updated, web-based nutrition management guideline for PKU: An evidence and consensus based approach.

BACKGROUND: In 2014, recommendations for the nutrition management of phenylalanine hydroxylase deficiency were published as a companion to the concurrently published American College of Medical Genetics and Genomics guideline for the medical treatment of phenylketonuria (PKU). These were developed primarily from a summary of findings from the PKU scientific review conference sponsored by the National Institutes of Health and Agency for Healthcare Research & Quality along with additional systematic literature review. Since that time, the Genetic Metabolic Dietitians International and the Southeast Regional Newborn Screening and Genetics Collaborative have partnered to create a web-based technology platform for the update and development of nutrition management guidelines for inherited metabolic disorders. OBJECTIVE: The purpose of this PKU guideline is to establish harmonization in treatment and monitoring, to guide the integration of nutrition therapy in the medical management of PKU, and to improve outcomes (nutritional, cognitive, and developmental) for individuals with PKU in all life stages while reducing associated medical, educational, and social costs. METHODS: Six research questions critical to PKU nutrition management were formulated to support guideline development: Review, critical appraisal, and abstraction of peer-reviewed studies and unpublished practice literature, along with expert Delphi survey feedback, nominal group process, and external review from metabolic physicians and dietitians were utilized for development of recommendations relevant to each question. Recommendations address nutrient intake, including updated protein requirements, optimal blood phenylalanine concentrations, nutrition interventions, monitoring parameters specific to life stages, adjunct therapies, and pregnancy and lactation. Recommendations were graded using a rigorous system derived from the Academy of Nutrition and Dietetics. RESULTS AND CONCLUSION: These guidelines, updated utilizing a thorough and systematic approach to literature analysis and national consensus process, are now easily accessible to the global community via the newly developed digital platform. For additional details on specific topics, readers are encouraged to review materials on the online portal: https://GMDI.org/.

Concept Mapping as a Method to Engage Patients in Clinical Quality Improvement.

Patient engagement has become a primary care research and practice priority. Little guidance exists, however, on how best to engage patients in primary care practice improvement, or how to measure the impact of their engagement. We present an overview of group concept mapping as a method for engaging patients in primary care practice improvement. We detail the group concept mapping process as a tool for use in primary care practice improvement, research, and evaluation, and we present resources to enable researchers and practice leaders to use this tool in practice improvement. To illustrate the method, we present a practice-based quality improvement project conducted with patients and staff at a large urban academic primary care practice.

Recommendations for the nutrition management of phenylalanine hydroxylase deficiency.

The effectiveness of a phenylalanine-restricted diet to improve the outcome of individuals with phenylalanine hydroxylase deficiency (OMIM no. 261600) has been recognized since the first patients were treated 60 years ago. However, the treatment regime is complex, costly, and often difficult to maintain for the long term. Improvements and refinements in the diet for phenylalanine hydroxylase deficiency have been made over the years, and adjunctive therapies have proven to be successful for certain patients. Yet evidence-based guidelines for managing phenylalanine hydroxylase deficiency, optimizing outcomes, and addressing all available therapies are lacking. Thus, recommendations for nutrition management were developed using evidence from peer-reviewed publications, gray literature, and consensus surveys. The areas investigated included choice of appropriate medical foods, integration of adjunctive therapies, treatment during pregnancy, monitoring of nutritional and clinical markers, prevention of nutrient deficiencies, providing of access to care, and compliance strategies. This process has not only provided assessment and refinement of current nutrition management and monitoring recommendations but also charted a direction for future studies. This document serves as a companion to the concurrently published American College of Medical Genetics and Genomics guideline for the medical treatment of phenylalanine hydroxylase deficiency.