A national postgraduate nurse practitioner and physician assistant fellowship in cystic fibrosis: An innovative approach to the provider shortage in complex and rare disease.

ABSTRACT: Cystic fibrosis (CF) is a complex life-limiting genetic condition that affects the respiratory, digestive, reproductive system, and sweat glands. Advances in treatment have led to improved survival and quality of life. Today, most persons with CF live to adulthood but require highly specialized care at accredited CF Care Centers. The growing and aging CF population combined with the provider workforce shortage have increased the demand for qualified CF providers. Nurse practitioners (NPs) and physician assistants (PAs) have been providing CF care for decades, but most learned on the job. The Leadership and Education for Advanced Practice Provider (LEAPP) fellowship in CF care aims to address the provider gap, ease transition to practice, and ensure access to specialized care. Unlike other institutional based joint NP/PA fellowships, LEAPP was designed to train providers at various locations across the national CF care center network. The program is innovative in several ways: (1) LEAPP employs a flipped classroom that pairs an online curriculum with case-based virtual discussion with content experts from the CF care network; (2) fellows receive mentored clinical training at their home CF center; (3) LEAPP partnered with a university-based team to ensure best practices and evaluation for adult learners; and (4) LEAPP promotes organizational enculturation through program components of professional mentoring, quality improvement, and leadership. This innovative approach may be suitable for other complex conditions that require highly specialized care, such as sickle cell disease, spina bifida, and solid organ transplant.

Cross-Cutting mHealth Behavior Change Techniques to Support Treatment Adherence and Self-Management of Complex Medical Conditions: Systematic Review.

Background: Mobile health (mHealth) interventions have immense potential to support disease self-management for people with complex medical conditions following treatment regimens that involve taking medicine and other self-management activities. However, there is no consensus on what discrete behavior change techniques (BCTs) should be used in an effective adherence and self-management-promoting mHealth solution for any chronic illness. Reviewing the extant literature to identify effective, cross-cutting BCTs in mHealth interventions for adherence and self-management promotion could help accelerate the development, evaluation, and dissemination of behavior change interventions with potential generalizability across complex medical conditions. Objective: This study aimed to identify cross-cutting, mHealth-based BCTs to incorporate into effective mHealth adherence and self-management interventions for people with complex medical conditions, by systematically reviewing the literature across chronic medical conditions with similar adherence and self-management demands. Methods: A registered systematic review was conducted to identify published evaluations of mHealth adherence and self-management interventions for chronic medical conditions with complex adherence and self-management demands. The methodological characteristics and BCTs in each study were extracted using a standard data collection form. Results: A total of 122 studies were reviewed; the majority involved people with type 2 diabetes (28/122, 23%), asthma (27/122, 22%), and type 1 diabetes (19/122, 16%). mHealth interventions rated as having a positive outcome on adherence and self-management used more BCTs (mean 4.95, SD 2.56) than interventions with no impact on outcomes (mean 3.57, SD 1.95) or those that used >1 outcome measure or analytic approach (mean 3.90, SD 1.93; P=.02). The following BCTs were associated with positive outcomes: self-monitoring outcomes of behavior (39/59, 66%), feedback on outcomes of behavior (34/59, 58%), self-monitoring of behavior (34/59, 58%), feedback on behavior (29/59, 49%), credible source (24/59, 41%), and goal setting (behavior; 14/59, 24%). In adult-only samples, prompts and cues were associated with positive outcomes (34/45, 76%). In adolescent and young adult samples, information about health consequences (1/4, 25%), problem-solving (1/4, 25%), and material reward (behavior; 2/4, 50%) were associated with positive outcomes. In interventions explicitly targeting medicine taking, prompts and cues (25/33, 76%) and credible source (13/33, 39%) were associated with positive outcomes. In interventions focused on self-management and other adherence targets, instruction on how to perform the behavior (8/26, 31%), goal setting (behavior; 8/26, 31%), and action planning (5/26, 19%) were associated with positive outcomes. Conclusions: To support adherence and self-management in people with complex medical conditions, mHealth tools should purposefully incorporate effective and developmentally appropriate BCTs. A cross-cutting approach to BCT selection could accelerate the development of much-needed mHealth interventions for target populations, although mHealth intervention developers should continue to consider the unique needs of the target population when designing these tools.

Partners in research: The success with therapies research consortium and the CF community unite to improve self-management.

BACKGROUND: The daily treatment regimen for an individual with cystic fibrosis (CF) can take more than 2 h to complete, and chronic treatment adherence rates are low. Developing partnerships between CF clinical researchers and the CF community is essential in developing acceptable, feasible, and effective strategies to improve self-management and adherence. METHODS: The Success with Therapies Research Consortium (STRC) was formed as a multi-center US collaborative to conduct rigorous research studies of adherence to CF treatments. A multidisciplinary team of researchers from 15 sites, collaborating with members of the CF community, is charged with developing, implementing, and disseminating real-world, patient-centered interventions for people living with CF. RESULTS: Since 2014, the STRC has conducted 8 studies. The CF community, people with CF (pwCF), and caregivers have come to serve in multiple valuable capacities on the STRC, including as members of the Steering Committee and Co-Principal Investigators. Additionally, while people with CF are irreplaceable participants in STRC studies, their influence, and that of their families and healthcare professionals, extends beyond the traditional research participant role. CONCLUSIONS: Engaging broadly with the CF community is the optimal model for developing interventions to support those living with CF in sustaining daily care. Input and direct involvement from people with CF, their families, and their caregivers has enabled the STRC to advance its mission through innovative clinical research approaches.

"Acquiring the Skills Needed to Communicate What Is in Our Teams' Heart: Love, Compassion and Partnership": Qualitative Analysis of Intact Multidisciplinary Teams' Experience of Relationship-Centered Communication Training.

The Partnership Enhancement Program (PEP) is a 6-hour relationship-centered communication training for intact cystic fibrosis (CF) teams. The aim of this study was to analyze qualitative responses from survey participants regarding their takeaways from the training. A total of 210 professionals participated in 20 pilot workshops at 19 care centers in the United States from November 2018 to December 2019. After the workshop, qualitative feedback was captured by PEP facilitators during a feedback gathering session or submitted immediately in writing by participants. The manuscript team used grounded theory and qualitative methods of coding to identify recurring themes across participant responses. Thematic analysis revealed 5 primary themes and a web of interconnected subthemes. Primary themes include the acquisition of skills to improve communication, strengthened patient/provider connection, improved quality of communication, improved team building, and the ability to change and enhance practice. Participants who completed PEP training endorse acquiring communication skills that increase coproduction of care with patients and caregivers as well as improve relationships across the healthcare system.

Surface improved agro-based material for the effective separation of toxic Ni(II) ions from aquatic environment.

In this present study, a novel and low cost surface improved material was prepared from the farm waste material (Borassus flabellifer male inflorescence) and its surface was enhanced by the sulphuric acid treatment to intensify the Ni(II) ions adsorption. The adsorption individualities such as availability of functional groups, essential elements and the exterior side and structural properties of the material were assessed by the FT-IR, EDX, SEM and XRD investigation. The impact of varied adsorption influencing parameters on Ni(II) ions adsorption was studied and optimized as pH - 6.0, biosorbent dosage - 1.5 g/L, contact time - 60 min and temperature - 303 K via batch adsorption examination. Modeling examinations were carried with varied adsorption isotherm (Langmuir, Freundlich, Fritz-Schlunder and Temkin) and kinetic models (Pseudo-first order, Pseudo-second order and Elovich kinetics). Thermodynamic studies were carried out at varied Ni(II) ions concentrations (25 mg/L - 150 mg/L) and temperatures (303 K-333 K) to explain the nature of Ni(II) ions adsorption on Borassus flabellifer male inflorescence. The prepared material has shown the most suitable Ni(II) ions adsorption results for the Langmuir isotherm (R2 = 0.9808) and Pseudo-first order kinetic models (R2 = 0.9735 for 25 mg/L). Thereby, the modeling study revealed that the prepared material has received the Ni(II) ions adsorption capacity (qm) value of 20.31 mg/g and the Ni(II) ions adsorption was physisorption. Thermodynamic results demonstrated that the Ni(II) ions adsorption was immediate, exothermic and favorable at low temperature.

Partnership Enhancement Program: Piloting a Communication Training Program for Cystic Fibrosis Care Teams.

Optimal information sharing between people with cystic fibrosis (PwCF), caregivers, and clinicians is key to managing CF. Based on research indicating the CF community's interest in improved care conversations, the Cystic Fibrosis Foundation partnered with the Academy of Communication in Healthcare to customize their relationship-centered communication training program for CF and pilot the Partnership Enhancement Program (PEP). Facilitated by interprofessional certified CF clinicians, PEP consisted of a full-day workshop and follow-up session with CF care teams. Over 98% of survey responses highly rated the applicability of the skills to respond to PwCF, and caregivers needs more effectively.

A review on algal-bacterial symbiotic system for effective treatment of wastewater.

Industrialization, urbanization and other anthropogenic activities releases different organic and inorganic toxic chemicals into the environment which prompted the water contamination in the environment. Different physical and chemical techniques have been employed to treat the contaminated wastewater, among them biological wastewater treatment using algae has been studied extensively to overwhelm the constraints related to the usually utilized wastewater treatment techniques. The presence of bacterial biota in the wastewater will form a bond with algae and act as a natural water purification system. The removal efficiency of single algae systems was very low in contrast with that of algal-bacterial systems. Heterotrophic microorganisms separate natural organic matter that is discharged by algae as dissolved organic carbon (DOC) and discharges CO2 that the algae can take up for photosynthesis. Algae bacteria associations offer an exquisite answer for tertiary and scrape medicines because of the capacity of micro-algae to exploit inorganic compounds for their development. Furthermore, for their ability to evacuate noxious contaminants, in this way, it does not prompt optional contamination. The present review contribute the outline of algae-bacteria symbiotic relationship and their applications in the wastewater treatment. The role of algae and bacteria in the wastewater treatment have been elucidated in this review. Moreover, the efforts have been imparted the importance of alage-bacteria consortium and its applications for various pollutant removal from the environment.

A review on biosynthesis of metal nanoparticles and its environmental applications.

Nanotechnology has become one of the emerging multi-disciplinary fields receiving universal attention and playing a substantial role in agriculture, environment and pharmacology. In spite of various techniques employed for nanoparticle synthesis such as laser ablation, mechanical milling, spinning and chemical deposition, usage of hazardous chemicals and expensiveness of the process makes it unsuitable for the continuous production. Hence the necessity of sustainable, economic and environment friendly approach development have increased in recent years. Microbial synthesis of nanoparticles connecting microbiology and nanotechnology is one of the green techniques employed for sustainable production. Gold, silver and other metal nanoparticles like platinum, palladium, molybdenum nanoparticles biosynthesis by bacteria, fungi, yeast and algae have been reported in the present review. On account of microbial rich community, several microbes have been explored for the production of nanoparticles. Nanoparticles are also employed for environmental remediation processes such as pollutant removal and detection of contaminants. Lack of monodispersity and prolonged duration of synthesis are the limitations of bio-synthesis process which can be overcome by optimization of methods of microbial cultivation and its extraction techniques. The current review describes the different microbes involved in the synthesis of nanoparticles and its environmental applications.

Adsorption characteristics of magnetic nanoparticles coated mixed fungal biomass for toxic Cr(VI) ions in aquatic environment.

In this research, the adsorptive removal of Cr(VI) ions from the aquatic environment have been studied using newly synthesized magnetic nanoparticles coated mixed fungal biomass (MNP-FB). Two fungal biomass such as Aspergillus fumigatus and Aspergillus niger were isolated, screened, and utilized as a precursor for making an adsorbent. Molecular characterization of isolated fungal species was recognized using 18S rRNA sequencing. The characterization studies of the MNP-FB were evaluated using Fourier Transform Infrared Spectrophotometer (FTIR) and Scanning Electron Microscopy (SEM) and Energy Dispersive X-ray (EDX) analyses. Optimization studies were studied to check the effect of different operating variables such as pH (2.0-9.0), equilibrium time (10-90 min), MNP-FB dosage (0.1-1.0 g/L), temperature (30-60 °C) and concentration of Cr(VI) ions (50-500 mg/L). Additionally, Freundlich isotherm model fits well for the adsorption of Cr(VI) ion using MNP-FB. The adsorption kinetics was interpreted well by Pseudo-first order model. The thermodynamic study concluded that Cr(VI) ions removal by MNP-FB was exothermic and appreciative at low temperatures. The monolayer adsorption efficiency of MNP-FB for Cr(VI) ions was measured as 249.9 mg/g. The current results reveal that MNP-FB has considered being a proficient and economically suitable material for the Cr(VI) ions removal from the water environment.

Clinical communication preferences in cystic fibrosis and strategies to optimize care.

BACKGROUND: The importance of optimizing communication between clinicians and individuals and families living with cystic fibrosis (CF) about daily care, adherence, and related psychosocial concerns is well documented. The purpose of this study was to gain an understanding of interpersonal communication experiences and preferences among individuals and families living with CF as they engage with the clinical team. The study also aimed to reveal opportunities for enhancing future interpersonal communication practices. METHODS: Five U.S. CF care centers participated in the following activities: (a) On-site observation of clinic interactions during outpatient visits; (b) On-site 1:1 interviews with individuals living with CF, their family members, and CF clinicians; (d) Focus groups conducted in person with CF care team members; (d) Focus groups conducted virtually with adults and family members with CF. Content analysis of transcripts and constant comparative methods were used to identify emergent themes. RESULTS: Four themes related to participants' needs and preferences for clinic interactions emerged during analysis: (a) eliciting psychosocial concerns, (b) addressing childhood development and transitions, (c) negotiating agendas and sharing decisions, and (d) educating to enhance CF conversations. CONCLUSION: CF clinicians and individuals and families living with CF expressed the need for resources and training to engage in better conversations with each other. Participants identified areas of high priority, including working together around social, psychological, and economic challenges, preparation for transition to adulthood, and sustaining daily care. Findings point to the value of developing advanced communication skills that foster trust-building, negotiating agendas, active listening, and collaborative goal-setting.

Highly effective cystic fibrosis clinical research teams: critical success factors.

BACKGROUND: Bringing new therapies to patients with rare diseases depends in part on optimizing clinical trial conduct through efficient study start-up processes and rapid enrollment. Suboptimal execution of clinical trials in academic medical centers not only results in high cost to institutions and sponsors, but also delays the availability of new therapies. Addressing the factors that contribute to poor outcomes requires novel, systematic approaches tailored to the institution and disease under study. OBJECTIVE: To use clinical trial performance metrics data analysis to select high-performing cystic fibrosis (CF) clinical research teams and then identify factors contributing to their success. DESIGN: Mixed-methods research, including semi-structured qualitative interviews of high-performing research teams. PARTICIPANTS: CF research teams at nine clinical centers from the CF Foundation Therapeutics Development Network. APPROACH: Survey of site characteristics, direct observation of team meetings and facilities, and semi-structured interviews with clinical research team members and institutional program managers and leaders in clinical research. KEY RESULTS: Critical success factors noted at all nine high-performing centers were: 1) strong leadership, 2) established and effective communication within the research team and with the clinical care team, and 3) adequate staff. Other frequent characteristics included a mature culture of research, customer service orientation in interactions with study participants, shared efficient processes, continuous process improvement activities, and a businesslike approach to clinical research. CONCLUSIONS: Clinical research metrics allowed identification of high-performing clinical research teams. Site visits identified several critical factors leading to highly successful teams that may help other clinical research teams improve clinical trial performance.

Metacarpophalangeal arthroplasty in rheumatoid arthritis: what determines satisfaction with surgery?

OBJECTIVE: In patients with rheumatoid arthritis (RA), it is unclear what determines satisfaction with metacarpophalangeal (MCP) joint replacement surgery. Previous studies have focused primarily on objective outcomes, such as range of motion (ROM) or strength, although some subjective measures have been examined. We investigate which outcomes most strongly correlate with patient satisfaction. METHODS: We assembled a retrospective cohort of 26 RA patients who received a total of 160 MCP silastic spacer implants. Patients answered a telephone survey, and 18/26 patients were examined. The strength of association between specific outcome variables and patient satisfaction with surgery was measured using Spearman correlations. RESULTS: Patients had a mean age of 64.8 years and 77% were female. The mean time since surgery was 5.5 years. The strongest determinant of patient satisfaction was postoperative hand appearance (Spearman r > or = 0.60). Pain was also highly correlated with satisfaction with surgery (Spearman r > or = 0.46). Ability to perform activities of daily living and portions of the Jebsen Hand Function Test were moderately correlated with patient satisfaction. Most other measures of hand strength and ROM showed only minimal correlation with patients' overall satisfaction with surgery. CONCLUSION: Overall satisfaction with silastic spacer surgery in this cohort of RA patients was most influenced by postoperative hand appearance and by pain. While objective measures of surgical outcomes are valuable reflections of technical success, they are not important determinants of patient satisfaction. The criteria used to assess MCP arthroplasty results should be revised to better capture the outcomes that appear to matter most to patients.