Self- and staff-reported pain in relation to contextual isolation in long-term nursing home residents with Alzheimer's disease and related dementias.

We evaluated the degree to which contextual isolation in nursing home residents with Alzheimer's disease and related dementias is associated with documented pain using the Minimum Data Set 3.0, a comprehensive resident assessment required of all nursing home residents in the United States. Contextual isolation was defined as having a socially salient characteristic (demographics, habits and interests, and clinical and care dimensions) shared by fewer than 20% of other residents in the same nursing home. Thirteen percent were contextually isolated on multiple characteristics. Among residents self-reporting pain, residents contextually isolated with respect to multiple characteristics were 8% more likely (95% confidence interval: 7% to 9%) to have pain relative to residents who were not contextually isolated on any characteristics. Long-stay nursing home residents with ADRD who live in settings where they were contextually isolated were more likely to have pain relative to those without contextually isolation on any characteristic.

Social Connectedness among Long-Stay Nursing Home Residents with Alzheimer's and Dementia: Exploring Individual and Facility-Level Variation.

INTRODUCTION: This study sought to explore individual and facility-level variation in social connectedness among long-stay nursing home residents with Alzheimer's or other dementias (ADRD). METHODS: We identified 721,074 long-stay residents with ADRD using 2016 Minimum Data Set 3.0 data. Social connectedness was defined using the social connectedness index (SCI) (high: SCI = 5, lower: 0 < SCI ≤ 4). Adjusted odds ratios (aOR) provided estimates of the associations between resident-level and facility-level characteristics, and high SCI was derived from logistic models. RESULTS: The SCI Cronbach's alpha was 0.69; 78.6% had high SCI scores. Men were less likely than women to have higher SCI scores (aOR = 0.97; 95% CI: 0.97-0.98). Increasing age was associated with higher SCI scores (e.g., aOR [85-94 vs. 40-64 years]: 1.07; 95% CI: 1.06-1.07). Those with moderate cognitive impairment (aOR: 0.87) and severe cognitive impairment (aOR: 0.85) had reduced odds of SCI = 5 relative to those with mild/intact cognitive function. Residents living in homes with special care dementia units and with higher percentage of residents with dementia had decreased odds of high social connectedness. DISCUSSION/CONCLUSION: Understanding resident- and nursing home-level variation in social connectedness may be important for targeting interventions that reduce isolation among residents with ADRD.

Development and psychometric evaluation of the Social Connectedness Index in nursing home residents with Alzheimer's disease and dementia using the Minimum Data Set 3.0.

OBJECTIVES: To develop a reliable and valid measure of social connectedness among nursing home residents with Alzheimer's disease and related dementias (ADRD) using items available in the Minimum Dataset 3.0 (MDS). METHODS: We conducted a retrospective scale development study using the 2016 MDS with two populations of nursing home residents with ADRD: (1) new admissions (not post-acute care) (n = 146,694); (2) residents with comprehensive annual assessments (n = 294,704). Twenty-nine items were included for consideration. Psychometric evaluation included content validity, item analysis, internal consistency reliability, criterion-related validity, and exploratory factor analysis. Analyses were stratified by self- or staff-assessed pain. RESULTS: The resulting five item Social Connectedness Index (SCI) has good content (Fleiss Kappa = 0.67), criterion-related and construct validity and adequate internal consistency reliability (Kuder Richardson-20: 0.63-0.74) in persons with ADRD. As anticipated, younger residents, men, and those with severe cognitive impairment, anxiety, and depression were more likely to be categorized in the low social connectedness group. CONCLUSION: The SCI is a promising measure for estimating the amount of social connectedness present for nursing home residents with ADRD. Further work needs to be done to evaluate the usefulness of the SCI for evaluating health and well-being among this population over time.

Pain Behaviors and Pharmacological Pain Management Among Newly Admitted Nursing Home Residents.

BACKGROUND: Clinicians may place more weight on vocal complaints of pain than the other pain behaviors when making decisions about pain management. OBJECTIVES: We examined the association between documented pain behaviors and pharmacological pain management among nursing home residents. METHODS: We included 447,684 residents unable to self-report pain, with staff-documented pain behaviors (vocal, nonverbal, facial expressions, protective behaviors) and pharmacological pain management documented on the 2010-2016 Minimum Data Set 3.0. The outcome was no pharmacological pain medications, as needed only (pro re nata [PRN]), as scheduled only, or as scheduled with PRN medications. We estimated adjusted odds ratios and 95% confidence intervals from multinomial logistic models. RESULTS: Relative to residents with vocal complaints only, those with one pain behavior documented (i.e., nonverbal, facial, or protective behavior) were more likely to lack pain medication versus scheduled and PRN medications. Residents with multiple pain behaviors documented were least likely to have no treatment relative to scheduled with PRN medications, PRN only, or scheduled only pain medication regimens. DISCUSSION: The type and number of pain behaviors observed are associated with pharmacological pain management regimen. Improving staff recognition of pain among residents unable to self-report is warranted in nursing homes.

Making explicit the development of PhD-prepared nurses to steward the discipline.

Leadership is a core curricular element of PhD programs in nursing. Our PhD faculty began a dialogue about being a leader, a steward of the discipline. We asked ourselves: (a) What expertise do PhD prepared nurse needs to begin to steward the discipline? (b) How do faculty engage PhD nursing students to assume responsibility for stewarding the discipline? Lastly, (c) How do we work with PhD nursing students to create their vision for how their work contributes to stewarding the discipline, from doctoral coursework throughout their career? We support the need for PhD graduates to have the skills to generate knowledge, conserve that which is important, and transform by disseminating new knowledge to a broad audience. Examples of nurses stewarding the discipline when pioneering research, critiquing traditional approaches to inquiry or trends in nursing practice, and developing policy, are highlighted along with examples of how PhD nursing students begin to steward the discipline.

Differences in Staff-Assessed Pain Behaviors among Newly Admitted Nursing Home Residents by Level of Cognitive Impairment.

OBJECTIVE: Pain is common among nursing home residents with cognitive impairment and dementia. Pain is often underdiagnosed and undertreated, which may lead to adverse health outcomes. Nonverbal behaviors are valid indicators of pain, but the extent to which these behavioral expressions vary across levels of cognitive impairment is unknown. This study sought to examine differences in the prevalence of pain behaviors among nursing home residents with varying levels of cognitive impairment. METHODS: The Minimum Data Set, version 3.0, was used to identify newly admitted nursing home residents with staff-assessed pain (2010-2016, n = 1,036,806). Staff-assessed pain behaviors included nonverbal sounds, vocal complaints, facial expressions, and protective body movements or postures over a 5-day look-back period for residents unable or unwilling to self-report pain. The Cognitive Function Scale was used to categorize residents as having no/mild, moderate, or severe cognitive impairment. Modified Poisson models provided adjusted prevalence ratios (aPR) and 95% CIs. RESULTS: Compared to residents with no/mild cognitive impairments (any pain: 48.1%), residents with moderate cognitive impairment (any pain: 42.4%; aPR: 0.94 [95% CI 0.93-0.95]) and severe cognitive impairment (any pain: 38.4%; aPR: 0.86 [95% CI 0.85-0.88]) were less likely to have any pain behavior documented. Vocal pain behaviors were common (43.5% in residents with no/mild cognitive impairment), but less so in those with severe cognitive impairment (20.1%). Documentation of facial expressions and nonverbal pain behaviors was more frequent for residents with moderate and severe cognitive impairment than those with no/mild cognitive impairment. CONCLUSIONS: The prevalence of behaviors indicative of pain differs by level of cognitive impairment. Pain evaluation and management plays an important role in treatment and care outcomes. Future work should examine how practitioners' perceptions of pain behaviors influence their ratings of pain intensity and treatment choices.

Expanding horizons: Lonergan's philosophy as a guide to PhD program pedagogy.

Historically, research-focused doctoral programs in nursing have used the apprenticeship model to educate and prepare nurse scientists for research careers. The assumption is that students learn best when paired with a faculty member who is working on the same topic. This model works well when there is a stable workforce, adequate funding streams and sufficient faculty with diverse expertise to capture the enthusiasm and varied topics of incoming doctoral students. However, we believe there are alternative approaches that are worth exploring. We propose an alternative way of preparing students for entry into nursing science. The purpose of this paper is to describe one PhD program's new approach, based on the philosophical premises of Bernard Lonergan, to create a generation of creative, insightful thinkers who expand the horizons of the nursing discipline.

Intervention Fidelity: Monitoring Drift, Providing Feedback, and Assessing the Control Condition.

BACKGROUND: Measurement of intervention fidelity is an essential component of any scientifically sound intervention trial. However, few papers have proposed ways to integrate intervention fidelity data into the execution of these trials. OBJECTIVE: The purpose of this article is to describe the intervention fidelity process used in a randomized controlled trial of a human patient simulator intervention and how these data were used to monitor drift and provide feedback to improve the consistency of both intervention and control delivery over time in a multisite education intervention for parents of children with newly diagnosed Type 1 diabetes. METHODS: Intervention fidelity was measured for both the intervention and control condition by direct observation, self-report of interventionist delivery, and parent participant receipt of educational information. Intervention fidelity data were analyzed after 50%, 75%, and 100% of the participants had been recruited and compared by group (treatment and control) and research site. RESULTS: The sample included 191 parents of young children newly diagnosed with Type 1 diabetes. Observations scores in both intervention and control groups indicated a high level of intervention fidelity. Treatment receipt was also high and did not differ by treatment group. The teaching session attendance rates by site and session were significantly different at Time Point 1 (50% enrollment); following study staff retraining and reinforcement, there were no significant differences at Time Point 3 (100% enrollment). IMPLICATIONS: Results demonstrate the importance of monitoring intervention fidelity in both the intervention and control condition over time and using these data to correct drift during the course of a multisite clinical trial.

Pancreatitis Quality of Life Instrument: A Psychometric Evaluation.

OBJECTIVES: Chronic pancreatitis is a significant medical problem that impacts a large number of patients worldwide. In 2014, we developed a disease-specific instrument for the evaluation of quality of life in this group of patients: pancreatitis quality of life instrument (PANQOLI). The goal of this study was to evaluate its psychometric properties: its reliability and its construct validity. METHODS: This is a cross-sectional multi-center study that involved 12 pancreatic disease centers. Patients who met the inclusion/exclusion criteria for chronic pancreatitis were invited to participate. Those who accepted were asked to complete seven questionnaires/instruments. Only patients who completed the PANQOLI were included in the study. Its reliability and its construct validity were tested. RESULTS: A total of 159 patients completed the PANQOLI and were included in the study. They had a mean age of 49.03, 49% were male, and 84% were Caucasian. Six of the 24 items on the scale were removed because of lack of inter-item correlation, redundancy, or lack of correlation to quality of life issues. The final 18-item scale had excellent reliability (Cronbach's alpha coefficient: 0.914) and excellent construct validity with good correlation to generic quality of life instruments (SF-12 and EORTC QLQ-C30/QLQ-PAN26) and lack of correlation to non-quality of life instruments (MAST and DAST). Through exploratory factor analysis, the PANQOLI was found to consist of four subscales: emotional function scale, role function scale, physical function scale, and "self-worth" scale. CONCLUSIONS: PANQOLI is the first disease-specific instrument to be developed and validated for the evaluation of quality of life in chronic pancreatitis patients. It has a unique subscale for "self-worth" that differentiates it from other generic instruments. Studies are currently under way to evaluate its use in other populations not included in this study.

Revisiting a non-significant findings study: a parent mentor intervention trial as exemplar.

The purpose of this paper is to describe an interactive process for revising a parent social support intervention study with non-significant quantitative findings but strong clinical significance. We will present the methodological challenges that were problematic in the original intervention that potentially contributed to the non-significant findings, and a revised plan of action for conducting a future parent social support intervention. Of note, we have reconsidered the theory used to frame the original study, the randomization process, the intervention clarity and fidelity plan, what measures would better capture the effect, and the development of a more robust analysis plan that considers intra-family correlation, mediation and moderation (mixed model analysis). We will present the revision for each of these methods supported by recent empirical literature. Although this process may not be appropriate for all non-significant interventions, it should be considered with any study that has clinical significance.

Burnout Among Young Adults With Type 1 Diabetes.

PURPOSE: The purpose of this qualitative descriptive study was to describe the experience of diabetes burnout in young adults with type 1 diabetes (T1DM). In addition, aims included participant perspectives of risk and protective factors associated with burnout and ways to balance everyday life with diabetes self-management (DSM). METHODS: Young adults with T1DM (N = 11) were recruited through social media platforms and modified snowball sampling and interviewed. Informational redundancy was achieved. Qualitative thematic coding and analysis were conducted within and across transcripts. RESULTS: Diabetes burnout was described as the willingness to put diabetes and DSM on the "back burner" and let things slide due to exhaustion, frustration, apathy, and the desire to be like everyone else for a while. Risk and protective factors were identified along with strategies to achieve balance of DSM in everyday life. CONCLUSIONS: This study identified a clear definition of diabetes burnout and acknowledges this concept as distinct and separate from other psychosocial conditions. Health care providers can utilize this information to identify individuals at risk for diabetes burnout and offer more effective support to lessen the overall burden associated with T1DM.

A proposal for quality standards for measuring medication adherence in research.

A decade after widespread recognition that adherence to medication regimens is key to antiretroviral effectiveness, considerable controversy remains regarding a "gold standard" for adherence measurement. Each adherence measurement approach has strengths and weaknesses and each rests on specific assumptions. The range of assumptions regarding adherence measurement and the diversity with which each approach is implemented strongly suggest that the evaluation of a particular measure outside of the context in which it was used (e.g. the study's operational protocol) may result in undeserved confidence or lack of confidence in study results. The purpose of this paper is to propose a set of best practices across commonly used measurement methods. Recommendations regarding what information should be included in published reports regarding how adherence was measured are provided to promote improvement in the quality of measurement of medication adherence in research.

Measuring patient-provider trust in a primary care population: refinement of the health care relationship trust scale.

Accurately measuring trust between patients and health care providers is important because low patient-provider trust can lead to poor treatment adherence and negative health outcomes. To measure patient-provider trust, we developed the Health Care Relationship (HCR) Trust scale. Findings from our initial use of the scale suggested the need to examine the scale's psychometric performance in a larger sample of adults with various chronic health conditions. We therefore examined the psychometric properties of the HCR Trust Scale in a random sample of adult primary care patients. Thirteen of the original 15 items fit the data best; a single-factor structure explained 67% of the variance in patient-provider trust. The Cronbach's alpha for the 13-item HCR Trust Scale-Revised was .96.

Prevalence and treatment of neuropathic pain diagnoses among U.S. nursing home residents.

ABSTRACT: Neuropathic pain is a common condition experienced by older adults. Prevalence estimates of neuropathic pain and descriptive data of pharmacologic management among nursing home residents are unavailable. We estimated the prevalence of neuropathic pain diagnoses and described the use of pain medications among nursing home residents with possible neuropathic pain. Using the Minimum Data Set 3.0 linked to Medicare claims for residents living in a nursing home on November 30, 2016, we included 473,815 residents. ICD-10 codes were used to identify neuropathic pain diagnoses. Identification of prescription analgesics/adjuvants was based on claims for the supply of medications that overlapped with the index date over a 3-month look-back period. The prevalence of neuropathic pain was 14.6%. Among those with neuropathic pain, 19.7% had diabetic neuropathy, 27.3% had back and neck pain with neuropathic involvement, and 25.1% had hereditary or idiopathic neuropathy. Among residents with neuropathic pain, 49.9% received anticonvulsants, 28.6% received antidepressants, 19.0% received opioids, and 28.2% had no claims for analgesics or adjuvants. Resident characteristics associated with lack of medications included advanced age, dependency in activities of daily living, cognitive impairment, and diagnoses of comorbid conditions. A diagnosis of neuropathic pain is common among nursing home residents, yet many lack pharmacologic treatment for their pain. Future epidemiologic studies can help develop a more standard approach to identifying and managing neuropathic pain among nursing home residents.

Racial/Ethnic Differences in Staff-Assessed Pain Behaviors Among Newly Admitted Nursing Home Residents.

CONTEXT: Nonverbal pain behaviors are effective indicators of pain among persons who have difficulty communicating. In nursing homes, racial/ethnic differences in self-reported pain and pain management have been documented. OBJECTIVES: We sought to examine racial/ethnic differences in nonverbal pain behaviors and pain management among residents with staff-assessed pain. METHODS: We used the U.S. national Minimum Data Set 3.0 and identified 994,510 newly admitted nursing home residents for whom staff evaluated pain behaviors and pain treatments between 2010 and 2016. Adjusted prevalence ratios (aPRs) and 95% CIs estimated using robust Poisson models compared pain behaviors and treatments across racial/ethnic groups. RESULTS: Vocal complaints were most commonly recorded (18.3% non-Hispanic black residents, 19.3% of Hispanic residents, and 30.3% of non-Hispanic white residents). Documentation of pain behaviors was less frequent among non-Hispanic black and Hispanic residents than non-Hispanic white residents (e.g., vocal complaints: aPRBlack: 0.76; 95% CI: 0.73-0.78; with similar estimates for other pain behaviors). Non-Hispanic blacks (47.3%) and Hispanics (48.6%) were less likely to receive any type of pharmacologic pain intervention compared with non-Hispanic white residents (59.3%) (aPRBlack: 0.87; 95% CI: 0.86-0.88; aPRHispanics: 0.87; 95% CI: 0.84-0.89). CONCLUSION: Among residents requiring staff assessment of pain because they are unable to self-report, nursing home staff documented pain and its treatment less often in Non-Hispanic blacks and Hispanics than in non-Hispanic white residents. Studies to understand the role of differences in expression of pain, explicit bias, and implicit bias are needed to inform interventions to reduce disparities in pain documentation and treatment.

An analysis of electronically monitored adherence to antiretroviral medications.

Medication adherence studies increasingly collect data electronically, often using Medication Event Monitoring System (MEMS) caps. Analyses typically focus on summary adherence measures, although more complete analyses are possible using adaptive statistical methods. These methods were used to describe individual-subject adherence patterns for MEMS data from a clinical trial. Subjects were adaptively clustered into groups with similar adherence patterns and clusters were compared on a variety of subject characteristics. There were seven different adherence clusters: consistently high, consistently moderately high, consistently moderate, consistently moderately low, consistently low, deteriorating starting early, and deteriorating late. Compared to other subjects, subjects with consistently high and consistently moderately high adherence were more likely to be male, White, and older and to maintain during study participation a CD4 cell count over 500 and an HIV viral load of at most 400 copies/ml. These results demonstrate the effectiveness of adaptive methods for comprehensive analysis of MEMS data.

Development and Psychometric Testing of the Peer-Mentor Support Scale for Parents of Children With Type 1 Diabetes and for Youths With Type 1 Diabetes.

PURPOSE: The purpose of this study was to develop and evaluate the psychometric properties of the Peer-Mentor Support Scale (PMSS), a measure of peer-mentor support provided to parents of children with type 1 diabetes (T1D) and to youths with T1D. METHODS: A multistage process was undertaken to include the following: item construction based on qualitive data from those who have experienced peer-mentor support, cognitive interviewing with parents and youths, content validity assessment, pilot testing of the scale, and psychometric evaluation of the PMSS with 165 participants. RESULTS: The final version of the PMSS included 17 items, scored on a 4-point Likert scale, with higher scores corresponding with greater peer-mentor support. The Cronbach's alpha was .85 (n = 165), and the intraclass correlation coefficient was .78 (n = 38). No significant relationship was found between the PMSS score and general social support, suggesting that peer-mentor support is distinct from general social support. Principal components factor analysis with varimax rotation was performed, indicating that the scale was unidimensional and explained 59.3% of the variance in peer-mentor support. CONCLUSION: The PMSS is a reliable and valid 17-item instrument that can be used to measure the unique contributions of peer mentorship for parents of children with T1DM and for youths with T1DM.

HCV treatment decision-making substance use experiences and hepatitis C treatment decision-making among HIV/HCV Coinfected Adults.

Hepatitis C virus (HCV) infection is a major source of morbidity and mortality among substance users and persons living with human immunodeficiency virus (HIV) infection. Treatment for chronic HCV infection involves complex decision-making. These decisions are even more complicated in persons with HIV and substance use related problems. A secondary analyses of qualitative data collected in the United States (2004-2005) with 31 HIV/HCV coinfected adults (48% women; mean age 44.7 years) revealed three themes related to substance use (substance use evolution, revolving door: going back out and reconstructing life) and two HCV treatment decision-making themes (HCV infection treatment issues: not a priority, fear, misinformation and get clean and try it). Study limitations and implications are discussed.

Improving women's adjustment to HIV infection: results of the Positive Life Skills Workshop Project.

Women face many challenges as they adjust to life with HIV infection. This report describes the results of a program designed to assist HIV-infected women to reframe negative meanings associated with HIV infection and adjust to HIV infection. The idea for the Positive Life Skills (PLS) workshop emerged from the results of a study of adjustment to chronic illness among HIV-infected women, guided by the cognitive appraisal model of stress and coping. Small-group sessions (6-15 women) met weekly for 10 consecutive weeks to identify and dialogue about personal and group learning needs. Women explored the power of art, science, and alternative therapies as venues for reframing the meaning of HIV in their lives. The workshop participants included 187 HIV-infected women (mean age, 39 years; range, 23-62 years). Responses from the workshop participants over a 6-year time frame suggested that the PLS workshop was effective at increasing antiretroviral adherence, improving mental well-being, and reducing stress.

The Symptom Experience of HIV/HCV-Coinfected Adults.

Hepatitis C virus (HCV) infection has emerged as a major problem for adults with HIV infection. This report describes the symptom experience of HIV/HCV-coinfected adults at entry into a longitudinal mixed-method study. In-depth qualitative interviews and a standardized quantitative symptom measure were used to capture the symptom experiences of 39 (46% women) HIV/HCV-coinfected patients. Four major themes emerged from the qualitative interviews: (a) difficulty differentiating between HIV and HCV-related symptoms, (b) commonly cited HCV-related symptoms, (c) ways to control or manage HCV-related symptoms, and (d) lack of symptoms or tests to monitor HCV disease. Participants reported an average of 10 different symptoms and a mean symptom experience score of 18.33 (range = 2-47). Results show the significant symptom burden experienced by HIV/HCV-coinfected adults. However, results suggest that the prevalence of symptoms for HIV/HCV-coinfected patients may not be greater than those experienced by patients with HIV infection alone.