Patient outcomes in longitudinal observational studies (POLOS) of rheumatoid arthritis: Determining the OMERACT core domain set.

OBJECTIVE: To define and select rheumatoid arthritis (RA)-specific core domain set for Longitudinal Observational Studies (LOS) within the Outcome Measures in Rheumatology (OMERACT) framework. METHODS: A three-round online Delphi exercise, including patient research partners (PRPs) and other community partners in healthcare, was conducted. Domains scored 7-9 (i.e., critically important to include) by ≥ 70 % of participants in both groups were included. Items were consolidated in a subsequent dedicated meeting. RESULTS: Nineteen domains scored ≥ 70 % consensus in both groups. The focus group refined these into a list of twelve domains. CONCLUSION: The achieved consensus will inform the next steps of developing the core domain set for LOS in RA.

Virtual training of rheumatoid arthritis peer coaches in motivational interviewing skills and concepts of cardiovascular disease.

Background: Peer coaching interventions are effective in helping individuals with chronic conditions understand their disease. Most peer coach training programs occur in person, which has become an obstacle during the COVID pandemic. We describe our experiences with virtual training for future peer coach interventions. Methods: Individuals with rheumatoid arthritis (RA) between 40 and 75 years of age were recruited and interviewed by the research team. We conducted seven virtual training sessions focused on four main points: Listen, Discuss, Practice, and Certify. The peer coaches provided feedback throughout the program, which was used to refine the training and intervention. A post-training focus group assessed satisfaction with the training program and intervention development process. Results: Four peer coaches (3 women, 1 man) were trained, including 2 Black and 2 White individuals with advanced degrees. Their ages ranged from 52 to 57, and their RA duration ranged from 5 to 15 years. An iterative process with the coaches and researchers resulted in a nine-week training program. Peer coaches reported satisfaction, confidence, and a preference for the virtual training format. Conclusion: This virtual peer coach training program was feasible and acceptable for coaches with advanced degrees during the global COVID-19 pandemic. Our approach represents an opportunity to adapt training that has been traditionally done in person. By doing so, our approach facilitates the recruitment and training of a diverse group of coaches and promotes sustainability.

Protocol for the pilot randomized trial of the CArdiovascular Risk assEssment for Rheumatoid Arthritis (CARE RA) intervention: a peer coach behavioral intervention.

BACKGROUND: Cardiovascular disease (CVD) is the most common cause of death among people with rheumatoid arthritis (RA), with an estimated increased risk of 50-60% compared to the general population. Lipid-lowering strategies have been shown to lower CVD risk significantly in people with RA and hyperlipidemia. Thus, CVD risk assessment has an important role to play in reducing CVD among people with RA. Yet currently only 37 to 45% of this population are receiving primary lipids screening. This paper describes the CArdiovascular Risk assEssment for RA (CARE RA) intervention, which is designed to address this issue. CARE RA is a peer coach intervention, that is, an intervention in which a person with RA coaches another person with RA, which is designed to educate people with RA about the relation between RA and CVD risk and to help them obtain evidence-based CVD risk assessment and treatment. METHODS: This is an open-label pilot study that will test if the participants assigned to complete the CARE RA curriculum with a peer coach will receive a cardiovascular risk assessment more frequently compared to those that complete the CARE RA curriculum by themselves. The CARE RA intervention is guided by Social Cognitive Theory. Participants in the peer coach intervention arm will receive the assistance of a peer coach who will call the participants once a week for 5 weeks to go over the CARE RA curriculum and train them on how to obtain CVD risk assessment. The control arm will complete the CARE RA curriculum without any assistance. Participants will be randomized 1:1 either to the control arm or to the peer coach intervention arm. The primary outcome is a participant's having a CVD risk assessment or initiating a statin, if indicated. Secondary outcomes include patient activation and RA medication adherence. The RE-AIM implementation framework guides the implementation and evaluation of the intervention. DISCUSSION: This pilot study will test the feasibility of the peer coach intervention in anticipation of a larger trial. CARE RA pioneers the use of peer coaches to facilitate the implementation of evidence-based treatment guidelines among people with RA. TRIAL REGISTRATION: ClinicalTrials.gov NCT04488497 . Registered on July 28, 2020.

When the patient does not pay: a survey of primary care physicians.

OBJECTIVE: Despite ethical implications, there are anecdotal reports of health practitioners withholding services from patients who do not pay their bills. We surveyed physicians about their attitudes and experiences regarding nonpaying patients. DESIGN: A cross-sectional mailed survey. PARTICIPANTS: Three hundred seventy-nine of 1000 surveyed primary care physicians participated. MEASUREMENTS AND MAIN RESULTS: We studied how likely participants were to withhold 13 services from hypothetical patients who did not pay the physician's bills based on a 4-point Likert scale. Respondents were asked whether they had actually ever withheld such services from patients. The effects of demographic data on the number of services withheld from hypothetical and actual patients were analyzed by analysis of variance and multiple logistic regression. Most respondents (84%) would have withheld at least 1 item of service from the hypothetical patient, with 41% having ever withheld care from their actual patients. Most services involved administrative actions, but many respondents would be willing to forego other types of medical care. Being younger (P = 0.003), believing that patients are not always entitled to medical care (P = 0.002) and being in an urban practice (P = 0.03) were associated with withholding medical care from patients. CONCLUSIONS: A majority of primary care practitioners responding to our survey would be willing to withhold medical care from patients who do not pay their bills; some have actually done so despite ethical and legal mandates to the contrary. Physicians should be educated about the importance of the patient-physician relationship and their ethical obligations to patients.

Primary care physicians' decisions about discharging patients from their practices.

OBJECTIVE: There are few data available about factors which influence physicians' decisions to discharge patients from their practices. To study general internists' and family medicine physicians' attitudes and experiences in discharging patients from their practices. DESIGN: A cross-sectional mailed survey was used. PARTICIPANTS: One thousand general internists and family medicine physicians participated in this study. MEASUREMENTS AND MAIN RESULTS: We studied the likelihood physicians would discharge 12 hypothetical patients from their practices, and whether they had actually discharged such patients. The effect of demographic data on the number of scenarios in which patients were likely to be discharged, and the number of patients actually discharged were analyzed via ANOVA and multiple logistic regression analysis. Of 977 surveys received by subjects, 526 (54%) were completed and returned. A majority of respondents were willing to discharge patients in 5 of 12 hypothetical scenarios. Eighty-five percent had actually discharged at least one patient from their practices. Most respondents (71%) had discharged 10 or fewer patients, but 14% had discharged 11 to 200 patients. Respondents who were in private practice (p < 0.000001) were more likely to discharge both hypothetical and actual patients from their practices. Older physicians (> or =48 years old) were more likely to discharge actual patients from their practices (p = 0.005) as were physicians practicing in rural settings (p = 0.003). CONCLUSIONS: Most physicians in our sample were willing to discharge actual and hypothetical patients from their practices. This tendency may have significant implications for the initiation of pay-for-performance programs. Physicians should be educated about the importance of the patient-physician relationship and their fiduciary obligations to the patient.

Physicians' decisions to withhold and withdraw life-sustaining treatment.

BACKGROUND: Few data are available about physicians' decisions in regard to withholding or withdrawing life-sustaining measures. We therefore studied internists' views on this subject. METHODS: We surveyed 1000 generalist and subspecialist internists about their views on withholding or withdrawing life-sustaining treatment. Thirty-two hypothetical cases were included. The effect of the demographic data on withholding or withdrawing treatment was analyzed via analysis of covariance and multiple logistic regression. RESULTS: Of 1000 internists, 407 (41%) completed and returned surveys. A majority of respondents (51%) were willing to withhold or withdraw treatment in all 32 scenarios; 49% were unwilling to withhold or withdraw in at least 1 scenario. Respondents were likely to withhold treatment in 14 of 16 scenarios compared with 13.7 of 16 scenarios for withdrawing treatments (P<.001). Respondents withheld or withdrew feeding tubes in 6.6 of 8 scenarios (P<.001) and antibiotics in 6.7 of 8 scenarios (P = .001) compared with ventilators (7.1 of 8 scenarios) and dialysis (7.3 of 8 scenarios). Respondents were less likely to withhold or withdraw treatments in nonterminally ill (12.9 of 16 scenarios) (P = .02) and alert patients (13.2 of 16 scenarios) (P<.001) compared with terminally ill patients (14.9 of 16 scenarios) and patients with dementia (14.5 of 16 scenarios). CONCLUSIONS: A large percentage of internists would be unwilling to adhere to some of patients' wishes to withhold or withdraw life-sustaining treatment. The clinical scenario and type of treatment affect internists' decisions about whether they would withhold or withdraw such treatment.

Physicians' willingness to report impaired colleagues.

We surveyed physicians to determine what factors were associated with their reporting of impaired colleagues to Physician Health Programs (PHPs). We conducted a cross-sectional mail survey of 1000 randomly selected practicing physicians in the United States. A survey instrument asked the physicians whether they would report 10 hypothetical impaired colleagues to a PHP. The results show that a majority of the physicians would report physicians to PHPs, but were more likely to report hypothetical physicians involved in substance abuse than those who were emotionally or cognitively impaired (p<0.001). Respondents who felt they had a societal obligation as opposed to an obligation to protect the rights of the individual (p=0.006) were more likely to report hypothetical physicians. Those respondents who stated they knew of guidelines on reporting impaired physicians had more frequently reported impaired colleagues (p<0.001). We conclude that physicians should be educated on the availability and functioning of PHPs and the ethical and legal obligations of assisting impaired colleagues.

Frequency and perceived competence in providing palliative care to terminally ill patients: a survey of primary care physicians.

We surveyed primary care physicians about their involvement and perceived skills in palliative care. A survey instrument asked how frequently internal medicine and family practice physicians performed 10 palliative care items. Subjects rated their skills in each area. A majority of physicians always or frequently performed all 10 palliative care items, but fewer than 50% of respondents adequately attended to the spiritual needs and economic problems of patients. Interest in palliative care was associated with an increased frequency in performing palliative care items (P = 0.036), while training in palliative care was associated with better perceived performance (P = 0.05). Only 36% of respondents had received training in palliative care. Internists and family practitioners provide palliative care to patients, but feel their skills are lacking in certain areas. Training may improve care to patients at the end of life.

Physicians' understanding of consent requirements for phase I clinical trials in cognitively impaired or highly vulnerable populations.

We investigated physicians' attitudes about entering patients who cannot give informed consent or who are of a vulnerable population into clinical trials. A survey instrument asked a nationwide sample of practicing physicians about whether ten hypothetical patients could be enrolled in a phase I clinical trials. The impact of demographic variables on the number of scenarios viewed as completely or somewhat acceptable was analyzed via student's T tests or analysis of variance (ANOVA) as applicable. All significant (p<0.01) variables were entered into a multiple logistic regression model. Eighty-four percent of respondents indicated that at least one case scenario was acceptable. A majority of those who conduct clinical trials (62%), who had training in the ethics of clinical research (78%), and who sit on institutional review boards (IRBs) (83%) approved of at least one case scenario. Physicians approved of the entry of some patients who cannot give informed consent or who are of a vulnerable population into clinical trials. More effective education on the guidelines involving clinical research should be available to practicing physicians, residents, and medical students. There should also be assurance that physicians who conduct clinical trials or who sit on IRBs have the requisite knowledge about the ethics of clinical research.

Modularity of MAP kinases allows deformation of their signalling pathways.

Eukaryotic protein kinase pathways have both grown in number and changed their network architecture during evolution. We wondered if there are pivotal proteins in these pathways that have been repeatedly responsible for forming new connections through evolution, thus changing the topology of the network; and if so, whether the underlying properties of these proteins could be exploited to re-engineer and rewire these pathways. We addressed these questions in the context of the mitogen-activated protein kinase (MAPK) pathways. MAPK proteins were found to have repeatedly acquired new specificities and interaction partners during evolution, suggesting that these proteins are pivotal in the kinase network. Using the MAPKs Fus3 and Hog1 of the Saccharomyces cerevisiae mating and hyper-osmolar pathways, respectively, we show that these pivotal proteins can be re-designed to achieve a wide variety of changes in the input-output properties of the MAPK network. Through an analysis of our experimental results and of the sequence and structure of these proteins, we show that rewiring of the network is possible due to the underlying modular design of the MAPKs. We discuss the implications of our findings on the radiation of MAPKs through evolution and on how these proteins achieve their specificity.

The good news about giving bad news to patients.

BACKGROUND: There are few data available on how physicians inform patients about bad news. We surveyed internists about how they convey this information. METHODS: We surveyed internists about their activities in giving bad news to patients. One set of questions was about activities for the emotional support of the patient (11 items), and the other was about activities for creating a supportive environment for delivering bad news (9 items). The impact of demographic factors on the performance of emotionally supportive items, environmentally supportive items, and on the number of minutes reportedly spent delivering news was analyzed by analysis of variance and multiple regression analysis. RESULTS: More than half of the internists reported that they always or frequently performed 10 of the 11 emotionally supportive items and 6 of the 9 environmentally supportive items while giving bad news to patients. The average time reportedly spent in giving bad news was 27 minutes. Although training in giving bad news had a significant impact on the number of emotionally supportive items reported (P <.05), only 25% of respondents had any previous training in this area. Being older, a woman, unmarried, and having a history of major illness were also associated with reporting a greater number of emotionally supportive activities. CONCLUSIONS: Internists report that they inform patients of bad news appropriately. Some deficiencies exist, specifically in discussing prognosis and referral of patients to support groups. Physician educational efforts should include discussion of prognosis with patients as well as the availability of support groups.