Patient Acceptance of Nurse Practitioners and Physician Assistants in Rheumatology Care.

OBJECTIVE: To assess whether patients with autoimmune disease would accept advanced practice providers (APPs) as an option to fill the growing shortage of rheumatologists. METHODS: We administered a cross-sectional survey to 500 patients or parents of children who reported having been diagnosed with qualifying autoimmune conditions and who had seen their primary rheumatology providers in the past 6 months. Respondents self-reported whether their primary providers were rheumatologists or APPs. Our analysis compared the attitude and experience of the patients whose primary rheumatology providers were APPs with those of patients whose primary providers were rheumatologists. RESULTS: Of respondents, 36.8% reported having APPs as primary rheumatology providers. Patients of APPs were significantly more likely to arrive at their provider's office in 15 minutes or less (P < 0.01) and to be able to schedule routine and urgent appointments sooner (P = 0.02 and 0.05, respectively). There were no significant differences in overall patient experience of care between provider types. Most patients rated their providers highly, but those who saw rheumatologists rated their providers significantly higher (P < 0.01). Patients of APPs were significantly more likely than patients of rheumatologists to prefer to see APPs over rheumatologists (P < 0.01) and to recommend APPs (P < 0.01). CONCLUSION: APPs may improve access to care and, regardless of provider type, patients rated their overall experience of care similarly. Overall, patient attitudes toward APPs were positive regardless of provider type, although APP patients held more positive overall attitudes toward APPs than did rheumatologist patients.

A patients' view of OA: the Global Osteoarthritis Patient Perception Survey (GOAPPS), a pilot study.

BACKGROUND: Globally, osteoarthritis (OA) is the third condition associated with disability. There is still poor treatment in OA but science holds the key to finding better treatments and a cure. It is essential to learn what's important to patients from them to implement the most effective OA management. The OA Patients Task Force, conducted the Global OA Patient Perception Survey (GOAPPS)-the first global survey made by patients to analize the quality of life (QoL) & patient perceptions of care. The goal was to collect data on OA patients' perception of OA to understand patients' needs and expectations to improve OA management. METHODS: Observational, cross-sectional study by online survey data collection from six countries, translated into three languages. The questionnaire was comprised of 3 sections: patient demographics and clinical symptomology characteristics; relationship with physicians: perception of attention, treatment, and information provided; and OA impact on daily activity and QoL. The results of the survey were evaluated using the Limited Data Set. The survey results were analyzed using descriptive statistics to characterize the patients' answers. Additionally, Cronbach's alpha was calculated to determine internal consistency validity. RESULTS: A total of 1512 surveys were completed in 6 countries. 84.2% of respondents reported pain/tenderness and 91.1% experienced limitations to physical activities. 42.3% of patients were not satisfied with their current OA treatment. 86% had comorbidities, especially hypertension, and obesity. 51.3 and 78% would like access to additional drug or additional non-drug/non-surgical treatments respectively. 48.2% of patients perceived their QoL to be affected by OA. The Cronbach's alpha was 0.61. CONCLUSIONS: OA has a significant impact on patients' daily activities and their desire to play an active role in managing this disease. Patients are seeking additional treatments, especially no pharmacological/no surgical treatments stressing the need for investing in clinical research, implementing OA preventive measures, and managing interventions to improve the healthcare value chain in OA.

Stakeholder Development of an Online Program to Track Arthritis-Related Patient-Reported Outcomes Longitudinally: Live Yes! INSIGHTS.

OBJECTIVE: Patient-reported outcome measures (PROMs) are increasingly used in clinical settings but may not provide benefits to patients outside of health encounters. The Arthritis Foundation's Live Yes! Network provides an opportunity for PROM use by individuals and the network that assists individuals with managing their arthritis between encounters. Our objective was to develop a patient-reported outcomes platform for the network, Live Yes! INSIGHTS, using mixed methods and extensive stakeholder input. METHODS: A mixed methods longitudinal transformation design was used, starting with semistructured interviews to specify the main priorities of the program, literature review to identify potential PROMs, modified Delphi and nominal group technique to select final PROMs, and focus groups to guide program implementation, messaging, and use of results. We gathered input from 93 participants, including from individuals living with arthritis (74% of participants), caregivers, providers, researchers, and measurement experts. RESULTS: Our mixed methods study resulted in the selection of Patient-Reported Outcomes Measurement Information System (PROMIS)-29, PROMIS Emotional Support Short Form v2.0, and the Health Care Empowerment Questionnaire, to be deployed through a Qualtrics platform. Triangulation of data resulted in identification of potential risks and benefits, including confidentiality, ability to personally track and share data, and an opportunity to contribute to research. CONCLUSION: An accessible measurement system backed by psychometrically strong PROMs, created with robust stakeholder engagement, and linked to a national patient network sets the stage for individuals with arthritis to better monitor and improve health outcomes both outside and inside health care settings and for the network to customize programming to meet needs.

Information needs across the family planning continuum: A survey of women with chronic autoimmune inflammatory conditions.

OBJECTIVE: This study assessed the information needs of women with chronic autoimmune inflammatory conditions across the pregnancy continuum. METHODS: We conducted a web-based survey with women about information needs related to family planning. Eligible participants were female, aged 18-44, had a diagnosis of a chronic inflammatory condition, and were at one of three pregnancy stages (planning, currently pregnant, or postpartum). RESULTS: The survey yielded 209 responses. Respondents had high levels of information needs and were active information seekers. Many respondents reported difficulty finding the information they need. Over half (56.9%) reported receiving conflicting information from different doctors, and a majority of those respondents reported doing their own research. Respondents expressed the greatest interest in resources that facilitated connections to other women and their experiences (87.4%). Pregnancy stage was significantly associated with information needs and preferences; respondents in the planning stage of pregnancy had higher information needs, reported more dissatisfaction with communication with doctors, and were less connected to pregnancy resources. PRACTICE IMPLICATIONS: Both providers and health/advocacy organizations have a role in improving information around this topic, such as developing and disseminating resources tailored to pregnancy status and supporting patient-centered communication around family planning.