How to construct a frailty index from an existing dataset in 10 steps.

BACKGROUND: The frailty index is commonly used in research and clinical practice to quantify health. Using a health deficit accumulation model, a frailty index can be calculated retrospectively from data collected via survey, interview, performance test, laboratory report, clinical or administrative medical record, or any combination of these. Here, we offer a detailed 10-step approach to frailty index creation, with a worked example. METHODS: We identified 10 steps to guide the creation of a valid and reliable frailty index. We then used data from waves 5 to 12 of the Health and Retirement Study (HRS) to illustrate the steps. RESULTS: The 10 steps are as follows: (1) select every variable that measures a health problem; (2) exclude variables with more than 5% missing values; (3) recode the responses to 0 (no deficit) through 1 (deficit); (4) exclude variables when coded deficits are too rare (< 1%) or too common (> 80%); (5) screen the variables for association with age; (6) screen the variables for correlation with each other; (7) count the variables retained; (8) calculate the frailty index scores; (9) test the characteristics of the frailty index; (10) use the frailty index in analyses. In our worked example, we created a 61-item frailty index following these 10 steps. CONCLUSIONS: This 10-step procedure can be used as a template to create one continuous health variable. The resulting high-information variable is suitable for use as an exposure, predictor or control variable, or an outcome measure of overall health and ageing.

Are Religiosity and Spirituality Related to Self-Reported Health Expectancy? An Analysis of the European Values Survey.

Research on religiosity and health has generally focussed on the United States, and outcomes of health or mortality but not both. Using the European Values Survey 2008, we examined cross-sectional associations between four dimensions of religiosity/spirituality: attendance, private prayer, importance of religion, belief in God; and healthy life expectancy (HLE) based on self-reported health across 47 European countries (n = 65,303 individuals). Greater levels of private prayer, importance of religion and belief in God, at a country level, were associated with lower HLE at age 20, after adjustment for confounders, but only in women. The findings may explain HLE inequalities between European countries.

The association of efficacy, optimism, uncertainty and health anxiety with inflammatory bowel disease activity.

OBJECTIVE: Positive and negative psychological attributes have been shown to influence disease outcomes in many chronic health conditions. We aimed to evaluate the association between self-efficacy, optimism, health anxiety and intolerance of uncertainty and disease activity in inflammatory bowel disease (IBD). METHODS: Adults with confirmed and recently active IBD enrolled in a prospective cohort study. Demographics, disease information, validated measures of psychological functioning related to general self-efficacy, optimism, health anxiety and intolerance of uncertainty were collected at baseline, week 26 and week 52. Clinical disease activity was assessed using the Inflammatory Bowel Disease Symptom Inventory (IBDSI), self-reported flares, and intestinal inflammation using fecal calprotectin (FCAL), collected at baseline, weeks 26 and 52. Generalized estimating equations were used to test the association between psychological functioning and disease activity. RESULTS: Participants' (n = 154) mean age was 43.4 years (SD 12.5), 69.5% were women and 64.1% had Crohn's disease. Adjusting for demographic variables, higher self-efficacy was associated with lower likelihood of flare by self-report (odds ratio [OR] 0.80, 95% confidence interval [CI] 0.71, 0.91) and IBDSI (OR 0.89, 95% CI 0.80, 0.99), while higher health anxiety was associated with greater likelihood of flare by self-report (OR 1.07, 95% CI 1.01, 1.18) and higher symptomatic disease activity (IBDSI; OR 1.14, 95% CI 1.05, 1.24). The psychological attributes were not significantly associated with active disease as measured by inflammation (FCAL). CONCLUSION: General self-efficacy and health anxiety are relevant in understanding patient experience with disease activity, and may be appropriate targets for psychological intervention in the care of individuals with IBD.

What Is a Flare? The Manitoba Living With IBD Study.

BACKGROUND: Flare is a poorly defined term used by patients and clinicians to indicate inflammatory bowel disease (IBD) status. This study aimed to evaluate the validity of a single-item 7-point flare indicator relative to other measures of disease flare. METHODS: The longitudinal Manitoba Living with IBD Study followed persons with IBD for 1 year; they completed biweekly online surveys and provided 3 stool samples. Disease flare on a single-item flare indicator with 7 possible responses developed for the study was defined by report of symptoms as "moderately" or "much" worse. The flare indicator was evaluated against 5 measures of disease activity: fecal calprotectin score (FCAL), a 2-point disease status indicator, a 4-point flare certainty indicator, the IBD Symptom Index short form (SIBDSI), and the short form IBD Questionnaire (SIBDQ). Participants in a flare, based on the 7-point measure, were matched to a nonflaring participant, and a stool sample was collected. RESULTS: Of the 155 IBD participants, almost half (n = 74) experienced a flare. Of those who flared, 97.0% endorsed active IBD on the 2-point indicator (controls 42.5%; P < .001); 91.9% endorsed active IBD on the 4-point certainty indicator (controls 32.9%; P < .001); 90.5% endorsed active disease on the SIBDSI (controls 34.2%; P < .001); and 48.5% had an elevated FCAL (controls 34.3%; P < .05). The mean SIBDQ was lower for the flare group compared with controls (43.9 [SD 11.1] vs 58.3 [SD 8.5]; P < .001), indicating worse disease. CONCLUSIONS: The 7-point flare indicator robustly identified symptomatic flares. This patient self-report indicator reflected meaningful changes in more complex clinical indices and had only weak concordance with the presence of inflammation.

Education, wealth, and duration of life expected in various degrees of frailty.

Multistate life tables are used to estimate life expected in three frailty states: frailty free, mild/moderate frailty, severe frailty. Estimates are provided for the combination of education and wealth by age, stratified by sex. Data consider 17,115 cases from the Health and Retirement Study, 2000-2014. Frailty is measured using a 59 item frailty index based on deficit accumulation. Estimates are derived using stochastic population analysis for complex events. Population-based and status-based results are reported. Findings confirm a hypothesis that the combination of higher education and wealth results in longer lives in more favorable degrees of frailty. Also, as hypothesized, wealth generally affords a greater advantage than does education among those with severe frailty at baseline. For instance, high wealth provides a 70-year-old woman with severe frailty at baseline 0.70 more total years and 0.81 more frailty free years then her counterpart with low wealth, compared to gains of 0.39 and 0.54, respectively, for those with high education. Unexpectedly, wealth also has a greater role among those frailty free at baseline. A 70-year-old woman frailty free at baseline with high wealth lives 3.19 more net years and 4.13 more years frailty free than her counterpart with low wealth, while the same comparison for high versus low education indicates advantages of 2.00 total and 1.96 frailty free years. Relative change ratios also indicate more robust results for wealth versus education. In sum, there is evidence that inequality in duration of life in degrees of frailty is socially patterned.

Utility of the MARS-5 in Assessing Medication Adherence in IBD.

INTRODUCTION: We aimed to validate the Medication Adherence Report Scale-5 (MARS-5) as a tool for assessing medication adherence in inflammatory bowel disease (IBD) and to determine predictors of medication adherence. METHODS: One hundred twelve (N = 112) adults with confirmed IBD participating in the longitudinal Manitoba Living With IBD Study were eligible. Demographics, IBD type, surgeries, disease activity (using the Inflammatory Bowel Disease Symptom Inventory and fecal calprotectin levels), perceived stress, and medication use were collected biweekly through online surveys. The MARS-5 scores were obtained at baseline and at 1 year. Correlation between medication monitoring data and MARS-5 scores was performed and the optimal MARS-5 cutoff point for adherence assessment determined. Predictors of medication adherence were assessed at both ≥90% and ≥80%. RESULTS: Participants were predominantly female (71.4%), mean age was 42.9 (SD = 12.8), and the majority (67.9%) had Crohn disease (CD). Almost half (46.4%) were taking more than 1 IBD medication, with thiopurines (41.9%) and biologics (36.6%) the most common. Only 17.9% (n = 20) were nonadherent at a <90% level; of those, 90% (n = 18) were using oral medications. The MARS-5 was significantly associated with adherence based on medication monitoring data at baseline (r = 0.48) and week 52 (r = 0.57). Sensitivity and specificity for adherence ≥80% and ≥90% were maximized at MARS-5 scores of >22 and >23, respectively. Having CD (OR = 4.62; 95% confidence interval, 1.36-15.7) was the only significant predictor of adherence. CONCLUSION: MARS-5 is a useful measure to evaluate adherence in an IBD population. In this highly adherent sample, disease type (CD) was the only predictor of medication adherence.

Association Between Change in Inflammatory Aspects of Diet and Change in IBD-related Inflammation and Symptoms Over 1 Year: The Manitoba Living With IBD Study.

BACKGROUND: We aimed to investigate (1) the stability of inflammatory aspects of diet over 1 year among persons with inflammatory bowel disease (IBD) and (2) the impact of change in diet on changes in inflammation and IBD symptoms over 1 year. METHODS: Participants were recruited to the Manitoba Living with IBD Study and completed the Harvard Food Frequency Questionnaire (FFQ). The Dietary Inflammatory Index (DII) and the Empirical Dietary Inflammatory Index (EDII) were used to calculate the inflammatory potential of the diet. Inflammation was measured by fecal calprotectin (≥250 µg/g). Symptoms were measured by the IBD Symptom Inventory (IBDSI). All measures were obtained at baseline and 1 year. Dietary Inflammatory Index and Empirical Dietary Inflammatory Index scores >0 and <0 reflect pro- and anti-inflammatory diet, respectively. Variance components analyses were used to describe diet stability. Associations between changes in diet and changes in active inflammation and symptoms were assessed using ordinal logistic regression and multilevel linear regression modeling. RESULTS: One hundred thirty-five participants (66% CD) were included. Approximately one third of the variance in EDII (36%) and DII (33%) scores was explained by changes in diet over time. Each unit increase in the change in EDII (baseline to follow-up) was associated with a greater odds of FCAL, indicating active inflammation (>250 µg/g; odds ratio, 3.1; 95% confidence interval [CI], 1.02-9.93; P = 0.04) and with a rise in IBDSI of 6.7 (95% CI, 1.0-12.4; P = 0.022; theoretical IBDSI range, 0-81). There was no association between changes in DII and changes in FCAL or IBDSI. CONCLUSION: The EDII, but not the DII, may have utility to identify the inflammatory potential of diet. This inflammatory potential can contribute to inflammation and/or disease symptoms in persons with IBD.

The Inflammatory Bowel Disease Symptom Inventory: A Patient-report Scale for Research and Clinical Application.

OBJECTIVES: Existing measures of inflammatory bowel disease (IBD) symptoms are not well suited to self-report, inadequate in measurement properties, insufficiently specific, or burdensome for brief or repeated administration. We aimed to develop a patient-reported outcome measure to assess a broader range of IBD symptoms. METHODS: The IBD Symptoms Inventory (IBDSI) was developed by adapting symptom items from existing clinician-rated or diary-format inventories; after factor analysis, 38 items were retained on 5 subscales: bowel symptoms, abdominal discomfort, fatigue, bowel complications, and systemic complications. Participants completed the IBDSI and other self-report measures during a clinic visit. A nurse administered the Harvey Bradshaw Index (HBI) for Crohn's disease (CD) or the Powell-Tuck Index (PTI) for ulcerative colitis (UC), and a gastroenterologist completed a global assessment of disease severity (PGA). RESULTS: The 267 participants with CD (n = 142) or UC (n = 125), ages 18 to 81 (M = 43.4, SD = 14.6) were 58.1% female, with a mean disease duration of 13.9 (SD = 10.5) years. Confirmatory factor analysis supported the 5 subscales. The total scale and subscales showed good reliability and significant correlations with self-report symptom and IBD quality of life measures, the HBI, PTI, and PGA. CONCLUSIONS: The IBDSI showed strong measurement properties: a supported factor structure, very good internal consistency, convergent validity, and excellent sensitivity and specificity to clinician-rated active disease. Self-report HBI and PTI items, when extracted from this measure, produced scores comparable to clinician-administered versions. The 38-item IBDSI, or 26-item short form, can be used as a brief survey of common IBD symptoms in clinic or research settings.

Living With Inflammatory Bowel Disease: Protocol for a Longitudinal Study of Factors Associated With Symptom Exacerbations.

BACKGROUND: There has been limited longitudinal research that has comprehensively evaluated possible factors in the exacerbation of inflammatory bowel disease (IBD) symptoms with or without associated inflammation. Evolving Web-based technologies facilitate frequent monitoring of patients' experiences and allow a fine-grained assessment of disease course. OBJECTIVE: We aimed to prospectively identify factors associated with symptom exacerbation and inflammation in IBD including psychological functioning, diet, health behaviors, and medication adherence. METHODS: Between June 2015 and May 2017, we enrolled adults with IBD, recruited from multiple sources, who had been symptomatically active at least once within the prior 2 years. They completed a Web-based survey every 2 weeks for 1 year and submitted a stool sample at baseline, 26 weeks, and 52 weeks. Any participant reporting a symptom exacerbation was matched to a control within the cohort, based on disease type, sex, age, and time of enrollment; both were sent a supplemental survey and stool collection kit. Biweekly surveys included validated measures of the disease course, psychological functioning, health comorbidities, and medication use. Intestinal inflammation was identified through fecal calprotectin (positive level >250 µg/g stool). RESULTS: There were 155 participants enrolled with confirmed IBD, 66.5% (103/155) with Crohn disease and 33.5% (52/155) with ulcerative colitis, of whom 98.7% (153/155) completed the study. Over the 1-year period, 47.7% (74/155) participants experienced a symptom exacerbation. The results of analyses on risk factors for symptom exacerbations are pending. CONCLUSIONS: We recruited and retained a longitudinal IBD cohort that will allow the determination of risk factors for symptom exacerbation with and without inflammation. This will increase understanding of symptom exacerbations among persons with IBD. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR1-10.2196/11317.

Coping with Inflammatory Bowel Disease: Engaging with Information to Inform Health-Related Decision Making in Daily Life.

BACKGROUND: People with inflammatory bowel disease (IBD) require disease and lifestyle information to make health-related decisions in their daily lives. Derived from a larger qualitative study of the lived experiences of people with IBD, we report on findings that explored how people with IBD engage with health-related information in their daily lives. METHODS: Participants were recruited primarily from the Manitoba IBD Cohort Study. We used purposive sampling to select people with a breadth of characteristics and experiences. Individual interviews were audio-recorded and transcribed verbatim. Data were analyzed using inductive qualitative methods consistent with a phenomenological approach. RESULTS: Forty-five people with IBD participated; 51% were women. Findings highlighted the temporal and contextual influences on engagement with health-related information. Temporal influences were described as the changing need for health-related information over time. Participants identified 6 contextual factors influencing engagement with information to make health decisions: (1) emotional and attitudinal responses, (2) perceived benefits and risks, (3) trust in the source of the information, (4) knowledge and skills to access and use information, (5) availability of evidence to support decisions, and (6) social and economic environments. CONCLUSIONS: Findings illustrate the changing needs for health-related information over the course of IBD, and with evolving health and life circumstances. Practitioners can be responsive to information needs of people with IBD by having high-quality information available at the right time in a variety of formats and by supporting the incorporation of information in daily life.

Understanding Work Experiences of People with Inflammatory Bowel Disease.

BACKGROUND: People with inflammatory bowel disease (IBD) are at increased risk for unemployment and work absenteeism over the course of their adult lives. However, little is known about the firsthand experiences of people living with the disease regarding perceived barriers, facilitators, and strategies for navigating work roles. METHODS: In this qualitative study, participants were purposefully recruited from 2 existing IBD cohort study samples. Recruitment strategies aimed for diversity in age, sex, and disease type, duration, and symptom activity. In-depth interviews sought perspectives of living with IBD. Data were analyzed using inductive qualitative methods. RESULTS: Forty-five people currently or previously in the workforce participated; 51% were female. The mean age was 45.4 years (SD = 16.1; range = 21-73 years). Mean IBD duration was 10.9 years (SD = 6.3). Participants had a broad range of experiences in adapting to work roles. IBD symptoms and treatments interacted with other personal and environmental factors to shape the experiences of work. Experiences were shaped by: (1) personal health and well-being, (2) personal values, beliefs, and knowledge, (3) job characteristics, (4) workplace physical environment, (5) workplace culture, and (6) financial factors. Participants identified personal strategies and environmental supports that assisted them to navigate their work roles. CONCLUSIONS: The perspectives of people with IBD provided in-depth understanding of contextual factors that influence work roles. They identified personal strategies to manage health and choices about work, environmental supports that promote timely workplace accommodations, and appropriate social insurance benefits as facilitators of work retention for people with IBD.