Well-being programmes in prisons in England and Wales: a mixed-methods study.

PURPOSE: In the past decade, there has been growing awareness of well-being and its importance and an increase in the development of activities or programmes aimed at improving well-being. The purpose of this study is to investigate what well-being programmes were being offered to prisoners in England and Wales and what benefits and other outcomes were experienced. DESIGN/METHODOLOGY/APPROACH: The study used a mixed-methods exploratory design in two phases. Phase 1 was a questionnaire survey of all adult prisons in England and Wales, completed by prison staff. In Phase 2, a sample of survey respondents took part in in-depth interviews. FINDINGS: The programmes identified in Phase 1 included physical activities, creative arts, mindfulness, horticulture, reading and animal-assisted activities. Prison staff reported a range of universally positive outcomes shared by all programmes, including enthusiasm from prisoners, enjoyment of the activities and being able to do something different from the usual prison routine. However, in Phase 2, interviewees rarely mentioned direct health and well-being benefits. The impetus for programmes was varied and there was little reference to national policy on health and well-being; this reflected the ad hoc way in which programmes are developed, with a key role being played by the Well-being Officer, where these were funded. ORIGINALITY/VALUE: The literature on well-being programmes in prisons is limited and tends to focus on specific types of initiatives, often in a single prison. This study contributes by highlighting the range of activities across prisons and elucidating the perspectives of those involved in running such programmes.

An Internet-based technique for the identification of persons with symptoms of inflammatory polyarthritis of less than 12 weeks.

Identifying persons with early rheumatoid arthritis (RA) is a major challenge. The role of the Internet in making decisions about seeking care has not been studied. We developed a method for early diagnosis and referral using the Arthritis Foundation's website. A person with less than 3 months of joint pain symptom who has not yet sought medical attention was screened. Prescreened persons are linked to a self-scoring questionnaire and get a "likelihood" of RA statement. If "likely," the person is offered a free evaluation and biomarker testing performed by Quest Diagnostics. The system available only to Massachusetts's residents yielded a small steady flow of screen-positive individuals. Over 21 months, 43,244 persons took the Arthritis Foundation website prescreening questionnaire; 196 were from Massachusetts and 60 took the self-scoring algorithm. Of the 48 who screened positive, 29 set up an appointment for a free evaluation, but six never came in. Twenty-four subjects were evaluated and diagnosed independently by three rheumatologists. One met the 1987 American College of Rheumatology (ACR) criteria for RA and two met the 2010 ACR/EULAR RA criteria. The 24 examined individuals were contacted at a minimum of 1 year and asked to redo the case-finding questionnaire and asked about their health resource utilization during the interval. Seventeen of the 24 subjects responded, and 10 had seen a health professional. Three of the 17 had a diagnosis of RA; all were on at least methotrexate. Internet case finding was useful in identifying new potential RA cases. The system's performance characteristics are theoretically limited only by the number of study sites available. However, the major barrier may be that seeing a health professional is not a priority for many individuals with early symptoms.

Evaluation of the internet for finding persons with undiagnosed rheumatoid arthritis and systemic lupus erythematosus.

BACKGROUND: The internet is used by many new rheumatology patients before visiting a health care provider, and is also used for health education, for recruiting study participants, administering surveys, conducting clinical trials, data entry and management of multicenter trials, and providing a forum for patients to share experiences in chat rooms. The internet has not been used for nor evaluated for public health applications. OBJECTIVES: We evaluated the internet for early detection and referral of individuals with "typical" early symptoms of undiagnosed rheumatoid arthritis (RA) and systemic lupus erythematosus (SLE). METHODS: The websites and selected links identified by search terms of typical symptoms were evaluated for health information quality, readability, and whether or not the sites prioritized possibilities and suggested actions. RESULTS: None of the websites examined were completely suitable for finding undiagnosed persons with early RA or SLE. Although the websites had accurate information, their reading levels were too high for the average reader, and were generally poor in terms of giving a differential diagnosis, prioritizing the possibilities and none provided an algorithm for action. CONCLUSIONS: Internet sites could be enhanced for early detection and referral. The internet has become an important factor in clinical practice and physicians are increasingly explaining or responding to the information that their patients find on the internet. Our study shows that the information available to individuals with undiagnosed RA and SLE is likely to be of little help to them and could delay their seeking appropriate attention.

A randomized controlled trial of an intervention to reduce low literacy barriers in inflammatory arthritis management.

OBJECTIVE: Test the efficacy of educational interventions to reduce literacy barriers and enhance health outcomes among patients with inflammatory arthritis. METHODS: The intervention consisted of plain language information materials and/or two individualized sessions with an arthritis educator. Randomization was stratified by education level. Principal outcomes included adherence to treatments, self-efficacy, satisfaction with care, and appointment keeping. Secondary outcomes included health status and mental health. Data were collected at baseline, six, and twelve months post. RESULTS: Of the 127 patients, half had education beyond high school and three quarters had disease duration greater than five years. There were no differences in the primary outcome measures between the groups. In mixed models controlling for baseline score and demographic factors, the intervention group showed improvement in mental health score at six and twelve months (3.0 and 3.7 points, respectively), while the control group showed diminished scores (-4.5 and -2.6 points, respectively) (p=0.03 and 0.01). CONCLUSION: While the intervention appears to have had no effect on primary outcomes, further studies with continued attention to literacy are warranted. Study site and disease duration must be considered as participants in this study had higher than average health literacy and had established diagnoses for years prior to this study. PRACTICE IMPLICATIONS: The study offers insight into an application of many of the protocols currently recommended to ameliorate effects of limited literacy.

Predictors of refusal during a multi-step recruitment process for a randomized controlled trial of arthritis education.

OBJECTIVE: Randomized controlled trials in patient education often have difficulty enrolling vulnerable populations-specifically, older, poorer, and less educated individuals. We undertook a randomized controlled trial (RCT) of an educational intervention for arthritis management, which included strategies to remove literacy-related barriers to participation. This paper reports on the multi-stage recruitment process and assesses whether refusal to participate was related to education, age, gender, working status, or insurance status. METHODS: The recruitment protocol was designed to eliminate literacy-related barriers to participation. Patients were never asked to read or fill out forms. Interactions were oral, using everyday terms and short, clear sentences. Patients who declined during a screening call were considered Stage 1 Refusers. Patients who initially expressed interest but neither completed a baseline questionnaire nor provided consent were considered Stage 2 Refusers. Patients who consented were considered Enrollees. Age, gender, and insurance status were compared between Stage 1 Refusers and Enrollees. A second analysis compared these variables, plus educational attainment and working status, between Stage 2 Refusers, and Enrollees. RESULTS: Of 408 eligible patients, there were 193 (47.3%) Stage 1 Refusers, 81 (19.9%) Stage 2 Refusers and 134 (32.8%) Enrollees. A higher proportion of Stage 1 Refusers than Enrollees were > or = 65 years old (58% vs. 37%, p = .0003). Multivariate analysis, adjusting for gender and insurance status, confirmed the effect of older age on refusal (OR = 2.3 (1.4, 3.6)). There were no significant differences between Stage 2 Refusers and Enrollees. CONCLUSION: We found no evidence of refusal to participate due to educational attainment, working status, insurance status, or gender. Older patients were more likely to refuse participation at the first stage of recruitment. PRACTICE IMPLICATIONS: Researchers should continue efforts to increase participation among older patients, particularly when studies are designed to be generalized to an elderly population as is the case with arthritis research. Strategies used in this recruitment protocol designed to remove literacy-related barriers to recruitment may be responsible for the observation that subjects with lower education did not have a higher rate of refusal. Such strategies deserve further study.

A pravastatin dose-escalation study in systemic lupus erythematosus.

Statin medications have been suggested for widespread use in patients with systemic lupus erythematosus (SLE). We studied the dose effectiveness and tolerability of pravastatin in SLE. We compared 41 SLE subjects in a two-month open-label dose-titration study of pravastatin to 22 SLE controls. Lipids, ALT, CPK, CRP, adverse effects were assessed. Linear mixed models assessed changes in lipids and CRP, comparing pravastatin subjects to controls. After 1 month of pravastatin 10 mg a day, total cholesterol decreased by 16% (+/-12.1%) and LDL by 24% (+/-17%), compared with 1.8% (+/-7.5%) and 2.6% (+/-8.6%) decreases in controls (P < 0.001). CRP did not decline. Glucocorticoids appeared to decrease pravastatin effectiveness. Serum CPK increased in one subject. Pravastatin reduced LDL and total cholesterol levels approximately the same degree observed in normal individuals, but the effect appeared blunted in those on modest doses of glucocorticoids and those with higher BMI.

Health literacy and arthritis research and practice.

PURPOSE OF REVIEW: The following review summarizes contributions from rheumatology to the growing field of health literacy. RECENT FINDINGS: Arthritis related publications have primarily contributed to one strand of research in health literacy: assessments of print materials and considerations of the match between the reading grade level of materials and the reading skills of intended audiences. Unlike researchers addressing other chronic diseases such as diabetes, however, researchers and practitioners in rheumatology have yet to examine links between patients' literacy skills and health outcomes. In addition, only one early study reports on evaluation findings of an education program designed for audiences with low literacy skills. No other studies report on efforts to increase health literacy in arthritis, reduce the demands of print materials for education or research purposes, or on efforts to ameliorate the effects of limited literacy skills among patients. SUMMARY: Health literacy may well influence arthritis outcomes as well as recruitment efforts in arthritis research. The 2004 report on health literacy from the Institute of Medicine calls for additional studies focused on the links between health literacy and health outcomes.

Factors determining participation in prevention trials among systemic lupus erythematosus patients: a qualitative study.

OBJECTIVE: A feasibility study for a trial of strategies for the prevention of atherosclerosis in patients with systemic lupus erythematosus (SLE) was stopped because of inadequate recruitment. There is little understanding of the factors influencing patients' decisions about participation in prevention trials. Our goal was to determine factors that patients with SLE consider in deciding about participating in prevention trials, to uncover concerns about SLE trials, and to investigate how study design and purpose affect participation decisions. METHODS: We conducted focus groups with trial participants (n = 13), trial nonparticipants (n = 8), and a group of patients with diabetes (n = 9). We conducted telephone interviews with SLE patients who refused participation in the trial and the focus groups (n = 10). A trained facilitator elicited factors influencing participation decisions. Transcripts were coded and grouped into themes using grounded theory. RESULTS: Demographic characteristics of the groups were similar. Seven factors emerged as important in decision making: current health status, study design, physician involvement, personal benefit, altruism, time, and incentives. These factors were considered by individuals who elected to participate and those who did not, but weighed differently. Among the trial participants, good health status, encouragement from one's physician, and desires to learn and to contribute stimulated participation. Reasons for nonparticipation included current health status, medication and randomization concerns, and personal factors. CONCLUSION: We observed that similar factors were weighed differently by participants and nonparticipants. Our results suggest that strategies such as health education, enlistment of personal physicians, and limitation of time requirements may enhance recruitment of patients with SLE into clinical prevention trials.

Barriers to a trial of atherosclerosis prevention in systemic lupus erythematosus.

OBJECTIVE: The effectiveness of aggressive management of traditional risk factors for accelerated atherosclerosis in systemic lupus erythematosus (SLE) has been advocated but not proven. We conducted a pilot, randomized, controlled trial of known prevention medications (pravastatin, ramipril, aspirin, and a combination B vitamin) plus individualized cardiovascular prevention education. We describe our experience in recruiting and retaining patients with SLE in this trial. METHODS: Patients with SLE by American College of Rheumatology criteria who lived within 1 hour of the hospital and had visits within the past 3 years were screened. All eligible patients were contacted by the principal investigator who was not their physician. The reasons for nonparticipation were elicited in a nonjudgmental manner. RESULTS: A total of 662 patients met the selection criteria for the study. Of these, 295 patients (45%) with contraindications to study medications were excluded. Ninety-seven (40%) of 244 eligible patients refused to participate. More than 40% of those phoned were unwilling to participate and, among those, 19% felt they were too sick, too well, or taking too many medications already. A total of 41 patients were enrolled in the trial, and 22 dropped out within 4 months. CONCLUSION: SLE is a chronic disease, and the development and testing of interventions aimed at the prevention of long-term sequelae are of paramount importance. Prevention trials in SLE face serious challenges, including the recruitment and retention of participants. Our experience provides insights into the barriers to participation in randomized prevention trials in SLE.