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In this national study of primary care practice–level factors associated with telehealth adoption in 2022, we found that training and assisting patients with the use of telehealth, broadband expansion efforts, and a higher proportion of low-income patients were associated with higher practice-level telehealth use, suggesting both opportunities for telehealth expansion and potential populations with higher need for its use.

Patient-centered research should assess outcomes important to patients and include patient-reported outcome measures (PROMs) to assess health-related quality of life (HRQOL) domains. Using a well-known HRQOL framework (World Health Organization QOL, or WHOQOL), we reviewed established PROMs used with adults with different types of arthritis to evaluate their HRQOL domain coverage and psychometric evidence to help PROM users select measures and determine whether other measures should be validated and/or developed. Nineteen PROMs and 92 corresponding articles were reviewed to determine which HRQOL domains were assessed. To support a streamlined but rigorous review, we used a rating system based on criteria established in part through existing rubrics (e.g., OMERACT COSMIN). Psychometric properties were rated on a scale from 1 to 18, where 18 was strongest. We examined the intersection between level of domain coverage and extent of psychometric support. Measures most commonly assessed physical health and level of independence, while fewer assessed social relations, environment, and psychological health. No measures assessed spirituality and religion, which may be relevant depending on intended use. PROMs with higher psychometric evidence tended to assess a broader range of HRQOL domains. Rubric scores ranged from 3 to 16, with an average of 9.3. Prominent and psychometrically sound PROMs are available that cover many of the WHOQOL domains. While gaps exist in the domain of spirituality, future work should focus on refining optimal use of existing PROMs relevant for arthritis versus developing new measures. We provide guidance on selecting PROMs, to that end.

Background Patient empowerment can improve health‐related outcomes and is important in chronic conditions, such as arthritis. This study aimed to validate the Health Care Empowerment Questionnaire (HCEQ), a patient‐reported experience measure of empowerment, for use with patients with arthritis and other rheumatic diseases. Methods The HCEQ measures Patient Information Seeking (or Involvement in Decisions) and Healthcare Interaction Results (or Involvement in Interactions) and asks respondents to answer questions in two ways: whether they feel something happened and its importance to them. Face validity was assessed through qualitative data (n = 8, nominal group technique; n = 55, focus groups). Measure structure was assessed through confirmatory factor analysis (CFA); internal consistency was also assessed (n = 9226). Test‐retest reliability was assessed with sub‐sample of participants (n = 182). Results We found adequate face validity of the HCEQ for patients with arthritis. The CFA indicated good fit to the data for the two‐factor structure of the HCEQ (RMSEA = 0.075; CFI = 0.987; TLI = 0.978; SRMR = 0.026). Internal consistency was strong (α=0.94 for both subscales). Test‐retest reliability was moderate for Patient Information Seeking (ICC=0.67) and good for Healthcare Interaction Results (ICC=0.77). Conclusions The HCEQ, with modifications, demonstrated promising psychometric properties within this sample, laying the foundation for further assessment. This work supports the HCEQ as an appropriate instrument for examining experiences with and perceived importance of empowerment in individuals with arthritis and other rheumatic conditions. Patient Contribution Patients contributed to the assessment of face validity. As a measure of patient empowerment, the HCEQ’s use can enable further participation of patients in health care.

•This profile leverages existing PROMIS items with enhanced content relevant for OAK.•Brief, targeted assessment options exist based on research and clinical preferences.•PROMIS metric facilitates comparisons to other conditions and general population.•The profile promotes disease-specific attention and system-wide PRO implementation. The Patient-Reported Outcomes Measurement Information System (PROMIS)-Plus-Osteoarthritis of the Knee (OAK) profile integrates universal PROMIS items with knee-specific items across 13 domains. We evaluated the psychometric properties of a subset of six domains associated with quality of life in people with OAK. In a cross-sectional study of OAK patients (n=600), we estimated reliability using Pearson and Spearman correlations with Knee Injury and Osteoarthritis Outcome Score (KOOS) subscores and known-groups validity with PROMIS Global Health. Measure responsiveness was tested via paired t-tests in a longitudinal study (n=238), pre/post total knee replacement. Across the six domains, internal consistency reliability (Cronbach's alpha) was 0.77−0.95 and test-retest reliability (intraclass correlation coefficients) was ≥0.90. Correlations with Knee Injury and Osteoarthritis Outcome Score (KOOS) subscores and PROMIS Global supported convergent and divergent validity. Known-groups validity testing revealed better scores in all domains for high vs. low global status groups, and knee-specific items added value in physical function and pain. All domains reflected (p<0.001) better health status scores at follow up. The six PROMIS-Plus-OAK profile domains demonstrated good psychometric characteristics. The measure integrates universal and knee-specific content to provide enhanced relevance, measurement precision and efficient administration for patient care and clinical research.

Introduction Early access to specialty palliative care is associated with better quality of life, less intensive end-of-life treatment and improved outcomes for patients with advanced cancer. However, significant variation exists in implementation and integration of palliative care. This study compares the organizational, sociocultural, and clinical factors that support or hinder palliative care integration across three U.S. cancer centers using an in-depth mixed methods case study design and proposes a middle range theory to further characterize specialty palliative care integration. Methods Mixed methods data collection included document review, semi-structured interviews, direct clinical observation, and context data related to site characteristics and patient demographics. A mixed inductive and deductive approach and triangulation was used to analyze and compare sites’ palliative care delivery models, organizational structures, social norms, and clinician beliefs and practices. Results Sites included an urban center in the Midwest and two in the Southeast. Data included 62 clinician and 27 leader interviews, observations of 410 inpatient and outpatient encounters and seven non-encounter-based meetings, and multiple documents. Two sites had high levels of “favorable” organizational influences for specialty palliative care integration, including screening, policies, and other structures facilitating integration of specialty palliative care into advanced cancer care. The third site lacked formal organizational policies and structures for specialty palliative care, had a small specialty palliative care team, espoused an organizational identity linked to treatment innovation, and demonstrated strong social norms for oncologist primacy in decision making. This combination led to low levels of specialty palliative care integration and greater reliance on individual clinicians to initiate palliative care. Conclusion Integration of specialty palliative care services in advanced cancer care was associated with a complex interaction of organization-level factors, social norms, and individual clinician orientation. The resulting middle range theory suggests that formal structures and policies for specialty palliative care combined with supportive social norms are associated with greater palliative care integration in advanced cancer care, and less influence of individual clinician preferences or tendencies to continue treatment. These results suggest multi-faceted efforts at different levels, including social norms, may be needed to improve specialty palliative care integration for advanced cancer patients.

Background A critical barrier to improving the quality of end-of-life (EOL) cancer care is our lack of understanding of the mechanisms underlying variation in EOL treatment intensity. This study aims to fill this gap by identifying 1) organizational and provider practice norms at major US cancer centers, and 2) how these norms influence provider decision making heuristics and patient expectations for EOL care, particularly for minority patients with advanced cancer. Methods This is a multi-center, qualitative case study at six National Comprehensive Cancer Network (NCCN) and National Cancer Institute (NCI) Comprehensive Cancer Centers. We will theoretically sample centers based upon National Quality Forum (NQF) endorsed EOL quality metrics and demographics to ensure heterogeneity in EOL intensity and region. A multidisciplinary team of clinician and non-clinician researchers will conduct direct observations, semi-structured interviews, and artifact collection. Participants will include: 1) cancer center and clinical service line administrators; 2) providers from medical, surgical, and radiation oncology; palliative or supportive care; intensive care; hospital medicine; and emergency medicine who see patients with cancer and have high clinical practice volume or high local influence (provider interviews and observations); and 3) adult patients with metastatic solid tumors and whom the provider would not be surprised if they died in the next 12 months and their caregivers (patient and caregiver interviews). Leadership interviews will probe about EOL institutional norms and organization. We will observe inpatient and outpatient care for two weeks. Provider interviews will use vignettes to probe explicit and implicit motivations for treatment choices. Semi-structured interviews with patients near EOL, or their family members and caregivers will explore past, current, and future decisions related to their cancer care. We will import transcribed field notes and interviews into Dedoose software for qualitative data management and analysis, and we will develop and apply a deductive and inductive codebook to the data. Discussion This study aims to improve our understanding of organizational and provider practice norms pertinent to EOL care in U.S. cancer centers. This research will ultimately be used to inform a provider-oriented intervention to improve EOL care for racial and ethnic minority patients with advanced cancer. Trial registration Clinicaltrials.gov ; NCT03780816 ; December 19, 2018.

Background Little is known about patient or provider experience and perceptions of stopping surveillance among older adults with a history of colon polyps. While guidelines recommend ceasing routine colorectal cancer screening in adults  > 75 years and those with limited life expectancy, guidance for ceasing surveillance colonoscopy in those with prior colon polyps suggests individualizing recommendations. Objective Identify processes, experiences, and gaps around individualizing decisions to stop or continue surveillance colonoscopy for older adults and areas for improvement. Design Phenomenological qualitative study design using recorded semi-structured interviews from May 2020 through March 2021. Participants 15 patients aged  ≥ 65 in polyp surveillance, 12 primary care providers (PCPs), and 13 gastroenterologists (GIs). Approach Data were analyzed using a mixed deductive (directed content analysis) and inductive (grounded theory) approach to identify themes related to stopping or continuing surveillance colonoscopies. Key Results Analysis resulted in 24 themes and were clustered into three main categories: health and clinical considerations; communication and roles; and system-level processes or structures. Overall, the study found support for discussions around age 75–80 on stopping surveillance colonoscopy with considerations for health and life expectancy and that PCPs should take a primary role. However, systems and processes for scheduling surveillance colonoscopies largely bypass PCPs which reduces opportunities to both individualize recommendations and facilitate patients’ decision-making. Conclusions This study identified gaps in processes to implement current guidelines for individualizing surveillance colonoscopy as adults grow older, including opportunities to discuss stopping. Increasing the role of PCPs in polyp surveillance as patients grow older provides more opportunities for individualized recommendations, so patients can consider their own preferences, ask questions, and make a more informed choice for themselves. Changing existing systems and processes and creating supportive tools for shared decision-making specific to older adults with polyps would improve how surveillance colonoscopy is individualized in this population.

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.

Purpose Adults with arthritis experience poor health-related quality of life (HRQOL), though research often focuses on single HRQOL outcomes or summary scores. We aimed to identify HRQOL profiles in adults with different arthritis types and determine risk and protective factors. Methods Data including PROMIS-29 Profile v2.1 and PROMIS Short Form v2.0 – Emotional Support 4a were collected through a national foundation’s online survey of adults with arthritis in the U.S. We used latent profile analysis (LPA) to characterize the heterogeneity in arthritis patients by clustering them into HRQOL profiles, based on statistical model fit and clinical interpretability. We fit a multinomial logistic regression model with HRQOL profile assignment as the outcome to determine associations with protective and risk factors. Results We included 25,305 adults with arthritis. The LPA results favored a five-HRQOL profile solution (entropy = 0.83). While some profiles displayed better HRQOL in some domains, 93% of the sample displayed impacted pain and physical functioning. One profile (20%) displayed mean T-scores nearly 2 standard deviations below the population mean. Despite poor physical HRQOL outcomes, one profile (10%) displayed average mental health. All demographic and clinical factors contributed significantly to the model, including risk factors (arthritis types, work status) and protective factors (more emotional support, starting exercise). Conclusion We identified profiles with consistently impacted HRQOL in arthritis, though one displayed average mental health functioning despite poor physical functioning. These results highlight the value of considering the patient’s HRQOL experience alongside treatment options, and the potentially positive impact of non-pharmacological interventions. Plain English Summary Why is this study needed? Adults with arthritis often have a variety of symptoms or experiences that impact different parts of their lives. Research sometimes only focuses on a few of those things rather than all of them. What is the key problem/issue/question this manuscript addresses? This study looks at several things that arthritis may affect, such as pain and ability to do physical activities, to understand the complexity of it and what situations in people’s lives may increase or decrease the effects. What is the main point of your study? There are five major groups of people with arthritis in terms of how it impacts their lives. Adults who are unable to work or who have multiple forms of arthritis are the most impacted by arthritis. However, some groups are doing as well as other adults without arthritis. What are your main results and what do they mean? The impacts of arthritis are complex. Focusing on these broader impacts important to patients and things that contribute to it might help with treatment options and interventions that go beyond medication.

BackgroundDecades of persuasive messages have reinforced the importance of traditional screening mammography at regular intervals. A potential new paradigm, risk-based screening, adjusts mammography frequency based on a woman’s estimated breast cancer risk in order to maximize mortality reduction while minimizing false positives and overdiagnosis. Women’s views of risk-based screening are unknown.ObjectiveTo explore women’s views and personal acceptability of a potential risk-based mammography screening paradigm.DesignFour semi-structured focus group discussions about screening mammography and surveys before provision of information about risk-based screening. We analyzed coded focus group transcripts using a mixed deductive (content analysis) and inductive (grounded theory) approach.ParticipantsConvenience sample of 29 women (40–74 years old) with no personal history of breast cancer recruited by print and online media in New Hampshire and Vermont.ResultsTwenty-seven out of 29 women reported having undergone mammography screening. All participants were white and most were highly educated. Some women accepted the idea that early cancer detection with traditional screening was beneficial—although many also reported hearing inconsistent recommendations from clinicians and mixed messages from media reports about mammography. Some women were familiar with a risk-based screening paradigm (primarily related to cervical cancer, n = 8) and thought matching screening mammography frequency to personal risk made sense (n = 8). Personal acceptability of risk-based screening was mixed. Some believed risk-based screening could reduce the harms of false positives and overdiagnosis (n = 7). Others thought screening less often might result in missing a dangerous diagnosis (n = 14). Many (n = 18) expressed concerns about the feasibility of risk-based screening and questioned whether breast cancer risk estimates could be accurate. Some suspected that risk-based mammography was motivated by a desire to save money (n = 6).ConclusionSome women thought risk-based screening made sense. Willingness to abandon traditional screening for the new paradigm was mixed. Broad acceptability of risk-based screening will require clearer communication about its rationale and feasibility and consistent messages from the health care team.