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Background Cystic Fibrosis (CF) is a chronic multi-system disease best cared for at Care centers with routine monitoring by interdisciplinary teams. Previously, remote home monitoring technology has been explored to augment in-person care. During the COVID-19 pandemic, traditional in-person care was limited and CF centers rapidly adapted to a telehealth delivery model. The purpose of this study was to understand how people with CF (PwCF) and families of PwCF experienced the shift to telehealthcare delivery. Methods This was a cross-sectional survey-based study conducted in 11 CF Centers. Two surveys were designed (one for adult PwCF and one for parents/guardians of PwCF) by participating CF center members with patient and family partner input. Surveys were disseminated electronically via email/text to all patients who completed a telehealth visit, and data were collected on secure Google Forms. Results Respondents rated their telehealth experiences as positive. Most were highly satisfied with their telehealth visit (77% adult, 72% pediatric) and found the visits to be highly convenient (85% for all surveyed). A majority of patients reported they had adequate time during the visit and had all questions and concerns addressed. Importantly, we also identified concerns regarding lack of in-person assessments including pulmonary function testing (PFT) and throat/sputum culture. Conclusion Telehealth was a feasible and well-accepted mechanism for delivering care in a chronic CF care model during the COVID-19 pandemic and may be useful in the post-pandemic era. Further work is needed to understand the impact of telehealth on patient outcomes, healthcare utilization and associated cost.

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Cystic fibrosis has historically been characterized by malnutrition, and nutrition strategies have placed emphasis on weight gain due to its association with better pulmonary outcomes. As treatment for this disease has significantly improved, longevity has increased and overweight and obesity have emerged issues in this population. The effect of excess weight and adiposity on CF clinical outcomes is unknown but may produce similar health consequences and obesity-related diseases as those observed in the general population. This review examines the prevalence of overweight and obesity in CF, the medical and psychological impact, as well as the existing evidence for treatment in the general population and how this may be applied to people with CF. Clinicians should partner with individuals with CF and their families to provide a personalized, interdisciplinary approach that includes dietary modification, physical activity, and behavioral intervention. Additional research is needed to identify the optimal strategies for preventing and addressing overweight and obesity in CF.

Background During the COVID-19 pandemic, CF centers shifted to a telehealth delivery model. Our study aimed to determine how people with CF (PwCF) and their families experienced telehealth and assessed its quality and acceptability for future CF care. Methods The CF Patient and Family State of Care Survey (PFSoC) was fielded from August 31-October 30, 2020. The PFSoC explored themes of overall telehealth quality, ease of use, desirability, and preference for a future mix of in-person and telehealth care. Demographic covariates considered included: gender, age, CFTR modulator status, and region of residence. Results 424 PwCF and parents of PwCF responded (47% parents). Most (81%) reported a telehealth visit which included a MD/APP and nurse team members. 91% found telehealth easy to use, and 66% reported similar/higher quality than in-person care. One-third (34%) reported the highest desire for future telehealth care, with 45% (n =212) desiring 50% or more of visits conducted via telehealth. Adults were more likely than parents to report highest desire for future telehealth (64% vs. 36%). Respondents who perceived telehealth as similar/higher quality were more likely to desire future telehealth compared to those who perceived telehealth as lower quality (96% vs. 50%). Mixed methods analysis revealed themes affecting perceptions of telehealth. Conclusions PwCF desire for future telehealth was influenced by perception of quality and age. Several themes emerged that need to be explored as telehealth is adapted into the CF chronic care model, especially when thinking about integration into pediatric care.

Introduction: A learning health network is a type of learning health system in which stakeholders use network organization to improve health and health care. Building on existing resources in the cystic fibrosis (CF) community, the Cystic Fibrosis Learning Network (CFLN) was designed to improve medical outcomes and quality of life through an intentional focus on achieving reliable evidence-based chronic care delivery and creating a system for data-driven collaborative learning. Methods:We describe the development and growth of the CFLN considering six domains of a Network Maturity Grid: system leadership; governance and policy management; quality improvement (QI); engagement and community building; data and analytics; and research. We illustrate the impact of the CFLN experience on chronic care processes and indicators of collaborative infrastructure. Results: The CFLN represents 36 accredited care centers in the CF Foundation Care Center Network caring for over 6300 patients. Of 6779 patient clinical care visits/quarter, 77% are entered into the CF Foundation Patient Registry within 30 days, providing timely means to track outcomes. Collaborative visit planning is occurring in 93% of clinical care visits to share agenda setting with patients and families. Almost all CFLN teams (94%, n = 34) have a patient/family partner (PFP), and 74% of PFPs indicate they are actively participating, taking ownership of, or leading QI initiatives with the interdisciplinary care team. In 2022, 97% of centers reported

Primary headache quality measuresHeadache and migraine are common, debilitating, and costly. Headaches are among the most prevalent neurologic disorders. In US studies, somewhere between 12% and 23% of adults over the age of 18 have had a migraine headache in the past 3 months. 1 In fact, the WHO ranks migraine headache in the top 20 of the world's most disabling medical illnesses.2 Frequent headache or migraine can significantly and negatively impact an individual's quality of life, family interactions, and ability to work. 3,4 Hawkins et al. 5 found that nationally, migraine-associated expenditures include outpatient care costs of $5.21 billion; prescription costs of $4.61 billion; inpatient care costs of $0.73 billion; and emergency department care costs of $0.52 billion. At work, people with migraine have higher levels of lost productivity and reduced performance, and more absences from work. 6In 2013, the American Academy of Neurology (AAN) formed a multidisciplinary headache measurement workgroup (HMWG) to identify and define quality measures aimed at improving care delivery and outcomes for patients with headache and migraine. The HMWG represented academic institutions, national health care providers, and advocacy organizations concerned with the care of patients with headache. The AAN led this effort, facilitated the process, and convened the meetings. The American Academy of Family Physicians and the American Medical Association (AMA)-convened Physician Consortium for Performance Improvement (PCPI) also partnered with the AAN and nominated representatives and attended the HMWG meeting.The details of the full AAN measure development process are available online. 7 The AAN headache quality measurement set could support quality improvement initiatives, public reporting, payment for quality, and maintenance of certification.OPPORTUNITIES FOR IMPROVEMENT Based on the literature, there are several gaps in the quality of care for people with headache and migraine.Overutilization of neuroimaging. There are opportunities to increase provider implementation of practice guidelines, patient education, and shared decision-making in order to decrease inappropriate neuroimaging across all practice settings. Evidence suggests increasing overutilization of neuroimaging (CT or MRI) in the evaluation of patients with atraumatic headache 8 and in children and adolescents with headache who have otherwise normal examination. [8][9][10] Although most headaches in children and adolescents are due to benign conditions, such as migraine and tension-type headache, parents and physicians are often concerned about serious underlying diseases, such as brain tumor. In adults, recurrent headaches without red flags and fitting a typical pattern of migraine or tension-type headaches, particularly in the context of a history of medication overuse/rebound, do not require neuroimaging. The etiology of headaches can most often be determined in children, adolescents, and adults by a thorough and precise history and a comprehensive neurologi...