Participants' perceptions of a group based program incorporating hands-on meal preparation and pedometer-based self-monitoring in type 2 diabetes.

BACKGROUND: Nutrition education (portion sizes, balanced meals) is a cornerstone of diabetes management; however, moving from information to behavior change is challenging. Through a single arm intervention study, we recently demonstrated that combining education with group-based meal preparation training has measureable effects on weight, eating behaviour, and glycemic control in adults with type 2 diabetes. In the present study, we conducted an in-depth examination of participants' perceptions of this strategy, through focus group discussion, to delineate effective elements of the strategy from participants' perspectives. METHODS: Participants who had completed the nutrition education/meal preparation training program were invited to attend one of four focus group discussions. These were led by experienced facilitators and guided by questions addressing experiences during the intervention and their perceived impact. Audiotapes were transcribed and qualitative content analysis of transcripts was performed. We report herein themes that achieved saturation across the four discussions. RESULTS: Twenty-nine (80.6%, 29/36) attended a focus group discussion. The program elements perceived as effective by participants included the hands-on interactive learning approach to meal preparation, the grocery store tour, pedometer-based self-monitoring, experiencing the link between food consumption/physical activity and glucose changes during the program, and peer support. Discussants reported changes in eating and walking behaviour, greater confidence in ability to self-manage diabetes, reductions in glucose levels and/or need for glucose-lowering medications, and, in some cases, weight loss. Family members and friends were facilitators for some and barriers for others in terms of achieving health behavior changes. CONCLUSIONS: Among adults with type 2 diabetes, a group based program that included hands-on meal preparation and pedometer-based self-monitoring was perceived as effective in conveying information, developing skills, building confidence, and changing health behaviors.

Strategies to optimize participation in diabetes prevention programs following gestational diabetes: a focus group study.

OBJECTIVE: We performed a qualitative study among women within 5 years of Gestational Diabetes (GDM) diagnosis. Our aim was to identify the key elements that would enhance participation in a type 2 diabetes (DM2) prevention program. RESEARCH DESIGN AND METHODS: Potential participants received up to three invitation letters from their GDM physician. Four focus groups were held. Discussants were invited to comment on potential facilitators/barriers to participation and were probed on attitudes towards meal replacement and Internet/social media tools. Recurring themes were identified through qualitative content analysis of discussion transcripts. RESULTS: Among the 1,201 contacted and 79 eligible/interested, 29 women attended a focus group discussion. More than half of discussants were overweight/obese, and less than half were physically active. For DM2 prevention, a strong need for social support to achieve changes in dietary and physical activity habits was expressed. In this regard, face-to-face interactions with peers and professionals were preferred, with adjunctive roles for Internet/social media. Further, direct participation of partners/spouses in a DM2 prevention program was viewed as important to enhance support for behavioural change at home. Discussants highlighted work and child-related responsibilities as potential barriers to participation, and emphasized the importance of childcare support to allow attendance. Meal replacements were viewed with little interest, with concerns that their use would provide a poor example of eating behaviour to children. CONCLUSIONS: Among women within 5 years of a GDM diagnosis who participated in a focus group discussion, participation in a DM2 prevention program would be enhanced by face-to-face interactions with professionals and peers, provision of childcare support, and inclusion of spouses/partners.

Care partnerships between family physicians and rheumatologists.

OBJECTIVE: To describe care partnerships between family physicians and rheumatologists. METHODS: A random sample (20%, n = 478) of family physicians was mailed a questionnaire, asking if there was at least 1 particular rheumatologist to whom the physician tended to refer patients. If the answer was affirmative, the physician would be considered as having a "care partnership" with that rheumatologist. The family physician then rated, on a 5-point scale, factors of importance regarding the relationship with that rheumatologist. RESULTS: The questionnaire was completed by 84/462 (18.2%) of family physicians; 52/84 (61.9%) reported having rheumatology care partnerships according to our definition. Regarding interactions with rheumatologists, most respondents rated the following as important (score ≥ 4): adequate communication and information exchange (44/50, 88.0%); waiting time for new patients (40/50, 80.0%); clear and appropriate balance of responsibilities (39/49, 79.6%); and patient feedback and preferences (34/50, 68%). Male family physicians were more likely than females to accord high importance to personal knowledge of the rheumatologist, and to physical proximity of the rheumatologist's practice. Regarding relationships with rheumatologists, 30/50 (60.0%) of respondents felt communication and information exchange were adequate, and 35/50 (70.0%) felt they had a clear balance of responsibilities. CONCLUSION: Almost two-thirds of family physicians have rheumatology care partnerships, according to our definition. In this partnership, establishing adequate communication and shorter waiting time seem of paramount importance to family physicians. A balanced sharing of responsibilities and patients' preferences are also valued. Although many physicians reported adequate communication and clear and appropriate balance of responsibilities in their current interactions with rheumatologists, there appears to be room for improvement.

Optimal care for rheumatoid arthritis: a focus group study.

Our study sought to identify barriers to optimal care for individuals with rheumatoid arthritis (RA). Our study was set in a population with universal access to comprehensive health care in the context of a university hospital health network. Using purposive sampling, we invited RA patients, health professionals, and decision makers from urban and rural regions to participate in structured focus group interviews. Content analysis was performed to determine themes emerging from the data. We identified four general themes. First, initial barriers to optimal care for people begin before primary care contact, at the level of the general population and/or related to primary care access. Second, many factors (at the patient, physician, and system level) influenced how quickly a patient is referred from primary to specialty care. Third, after referral, multiple comanagement issues influence patient outcomes. Fourth, optimizing RA care requires adequate resources. Participants emphasized the need for more education (of patients, of health care providers, and within the general community), better communication between and among patients and health care providers, and more efficient use of existing resources. Our work provides insights regarding barriers to and facilitators of optimal care in RA. Further work with these stakeholder groups in our health care region will examine potential solutions and the feasibility of their implementation. Our work provides an example of how research can assist stakeholder leaders in creating structured and incremental plans to improve health care delivery for persons with chronic diseases like RA.

Preliminary validity of the barriers to treatment adherence questionnaire in fibromyalgia: combining quantitative and focus group data.

The goals of this study were to (1) provide preliminary reliability and validity of the Barriers to Treatment Adherence Questionnaire, developed for patients with fibromyalgia, and (2) examine barriers to adherence and general adherence to multimodal treatment during a 3-mo. period. A secondary goal was to explore in a focus discussion group format patients' perceptions of the adherence process and ways of managing the treatment program. 39 fibromyalgia patients were followed while participating in a combined outpatient program of physiotherapy, occupational therapy, nursing, and cognitive behavioral therapy. The Barriers to Treatment Adherence Questionnaire demonstrated good reliability. Construct validity of the Barriers to Treatment Adherence Questionnaire was supported through significant positive correlations with the General Adherence Scale at Months 1 and 3. In addition, a significant change was observed in scores on the Barriers to Treatment Adherence Questionnaire for the physiotherapy component of treatment, with scores decreasing between Months 2 and 3. Addressing barriers to improve adherence may maximize the benefit of treatment programs.

Effects of adherence to treatment on short-term outcomes in children with juvenile idiopathic arthritis.

OBJECTIVE: To determine the impact of adherence to treatment (medication and prescribed exercise) on outcomes in children with juvenile idiopathic arthritis (JIA). METHODS: In this longitudinal study, we studied parents of patients with JIA at the Montreal Children's Hospital and British Columbia Children's Hospital in Vancouver. Adherence was evaluated on a visual analog scale in the Parent Adherence Report Questionnaire. Outcomes of interest were active joint count, pain, child functional score on the Child Health Assessment Questionnaire, quality of life score on the Juvenile Arthritis Quality of Life Questionnaire, and parental global impression of overall well-being. The association between adherence to treatment and subsequent outcomes was evaluated using generalized estimating equations and logistic regression. RESULTS: Mean age and disease duration of our sample of 175 children were 10.2 and 4.1 years, respectively. Moderate adherence to medication was associated with lower active joint count (odds ratio [OR] 0.47, 95% confidence interval [95% CI] 0.22-0.99). Moderate adherence to exercise was associated with better functional score (OR 0.13, 95% CI 0.03-0.54), and lower pain during the last week (OR 0.14, 95% CI 0.04-0.50). Both high and moderate adherence to exercise were associated with parental perception of global improvement. CONCLUSION: Improved outcomes in patients who adhered to treatment underscores the need for clinicians to address adherence issues with their patients. Sustaining adherence, particularly to the more time-consuming treatment of exercise, is a challenge.

Using diffusion of innovations theory to guide diabetes management program development: an illustrative example.

BACKGROUND: Optimal management of type 2 diabetes requires achievement of optimal glucose, blood pressure and lipid targets through promotion of prudent diet, regular physical activity and adherence to necessary medication. This may require the development of new programs for the coordination of required multidisciplinary services. Diffusion of innovations theory offers a conceptual framework that may facilitate the implementation of such programs. METHODS: To illustrate this, we have re-examined the implementation experiences previously reported by the developers of an actual diabetes management pilot program in Montreal, with an eye toward identifying potentially important process factors that could effectively increase adoption and sustainability. RESULTS: Physician participation in the program appeared to be influenced by perceived advantages of participation, compatibility of the program with own perspective and perceived barriers to participation. Organizational features that may have influenced participation included the extent of the program's integration within the existing health care system. CONCLUSION: A thorough consideration of process factors that impact system and team integration must equally include a focus on ensuring ongoing partnerships among the producers of the model, governments, nongovernmental organizations, private industry, user professionals and patients. This can only be achieved when a knowledge transfer action plan is developed to guide program development, implementation and sustainability.

Caregiver recall of treatment recommendations in juvenile idiopathic arthritis.

OBJECTIVE: Health care providers in juvenile idiopathic arthritis (JIA) might refer to caregivers' self-report of children's treatment-related behaviors to assist in clinical decisions. However, caregivers may believe that they are adhering to treatment even though they have a different understanding of recommendations than that intended by the medical team. We examined whether caregiver recall of children's JIA treatment matched actual recommendations at baseline and 3, 6, 9, and 12 months. METHODS: A total of 235 primary caregivers were recruited from rheumatology clinics at 2 pediatric university-based teaching hospitals in Canada. Using the Parent Adherence Report Questionnaire, caregivers indicated whether their child was prescribed medications and/or exercises. Medical charts were reviewed to determine the prescribed treatment. Level of agreement between both sets of data was then examined. RESULTS: A total of 175 caregivers provided complete data. Mean age of the children was 10.2 years (68.6% girls); 44.6% were diagnosed with oligoarthritis. Kappa coefficients for medication represented substantial to almost perfect agreement beyond chance, with better levels of agreement at 12 months (kappa = 0.81, 95% confidence interval [95% CI] 0.68, 0.94) than at baseline (kappa = 0.61, 95% CI 0.47, 0.76). Kappa coefficients for exercise represented slight to moderate agreement beyond chance, with better agreement at 12 months (kappa = 0.44, 95% CI 0.24, 0.63) than at baseline (kappa = 0.27, 95% CI 0.08, 0.47). CONCLUSION: Weaker agreement for the exercise regimen raises concern that caregivers may pay less attention to exercise recommendations or that these recommendations may not be easily understood.

Perceived adherence to prescribed treatment in juvenile idiopathic arthritis over a one-year period.

OBJECTIVE: To document perceived adherence to treatment (taking medications and performing exercises) in patients with juvenile idiopathic arthritis (JIA) over a 1-year period and to identify related factors. METHODS: We surveyed parents of patients with JIA at the Montreal Children's Hospital and British Columbia's Children's Hospital in Vancouver. Parents were asked to respond to a series of questionnaires every 3 months over a 12-month period. Perceived adherence was evaluated on a 100-mm visual analog scale (VAS) in the Parent Adherence Report Questionnaire (PARQ). Parental coping, distress, child function, disease severity and duration, perceived helpfulness of treatment, problems encountered, and sociodemographic data were also assessed. RESULTS: The mean age of our sample of 175 children was 10.2 years; mean age at diagnosis was 6.1 years and mean disease duration was 4.1 years. Perceived adherence to medications was consistently high, with average adherence at baseline, 3, 6, 9, and 12 months being 86.1, 91.7, 90.4, 92.0, and 88.8, respectively, on the PARQ VAS. Perceived adherence to exercise was lower but remained steady, with corresponding means of 54.5, 64.1, 61.2, 63.0, and 54.3, respectively. Using generalized estimating equation analysis, factors associated with higher perceived adherence to medications included perceived helpfulness of medications and lower disease severity; those associated with higher perceived adherence to exercise were younger age of the child, child involvement in responsibility for treatment, and higher perceived helpfulness of the treatment. CONCLUSION: Belief in helpfulness of treatment is associated with higher parental perceived adherence to treatment.

Walking behaviour and glycemic control in type 2 diabetes: seasonal and gender differences--study design and methods.

BACKGROUND: The high glucose levels typically occurring among adults with type 2 diabetes contribute to blood vessel injury and complications such as blindness, kidney failure, heart disease, and stroke. Higher physical activity levels are associated with improved glycemic control, as measured by hemoglobin A1C. A 1% absolute increase in A1C is associated with an 18% increased risk for heart disease or stroke. Among Canadians with type 2 diabetes, we postulate that declines in walking associated with colder temperatures and inclement weather may contribute to annual post-winter increases in A1C levels. METHODS: During this prospective cohort study being conducted in Montreal, Quebec, Canada, 100 men and 100 women with type 2 diabetes will undergo four assessments (once per season) over a one-year period of observation. These assessments include (1) use of a pedometer with a concealed viewing window for a two-week period to measure walking (2) a study centre visit during which venous blood is sampled for A1C, anthropometrics are assessed, and questionnaires are completed for measurement of other factors that may influence walking and/or A1C (e.g. food frequency, depressive symptomology, medications). The relationship between spring-fall A1C difference and winter-summer difference in steps/day will be examined through multivariate linear regression models adjusted for possible confounding. Interpretation of findings by researchers in conjunction with potential knowledge "users" (e.g. health professionals, patient groups) will guide knowledge translation efforts. DISCUSSION: Although we cannot alter weather patterns to favour active lifestyles, we can design treatment strategies that take seasonal and weather-related variations into account. For example, demonstration of seasonal variation of A1C levels among Canadian men and women with T2D and greater understanding of its determinants could lead to (1) targeting physical activity levels to remain at or exceed peak values achieved during more favourable weather conditions. Strategies may include shifting to indoor activities or adapting to less favourable conditions (e.g. appropriate outdoor garments, more frequent but shorter duration periods of activity) (2) increasing dose/number of glucose-lowering medications during the winter and reducing these during the summer, in anticipation of seasonal variations (3) examining the impact of bright light therapy on activity and A1C among T2D patients with an increase in depressive symptomology when sunlight hours decline.

Predictors of health status in women with fibromyalgia: a prospective study.

Although cross-sectional studies have identified correlates of dysfunction in fibromyalgia (FM) patients (e.g., psychological distress and pain), predictors of health status have not been previously investigated using a longitudinal research design. We gathered data from 156 women who met American College of Rheumatology criteria for primary FM recruited from both tertiary care and community settings. Stepwise multiple linear regression analysis indicated that poorer health status (p < .0001) and more comorbidity (p = .0089) at baseline were predictors of poorer health status 6 months later. After controlling for these covariates, psychological distress contributed significantly to the model (p = .01). There was a trend indicating that palliative coping styles (i.e., self-care, energy conservation) altered the impact of pain on 6-month health status (p = .06). These findings highlight the need for multidisciplinary interventions that target psychological distress, coping, and comorbidity in patients with FM.

Evaluating health-related quality-of-life studies in paediatric populations: some conceptual, methodological and developmental considerations and recent applications.

Although numerous paediatric-based health-related quality-of-life (HR-QOL) instruments are currently in use, there still remain conceptual, methodological and developmental issues to address. This paper provides an up-to-date critical review of the HR-QOL literature in paediatric medicine. Our analysis indicates that there is no consensus on how HR-QOL and overall QOL should be defined and measured in children. It is recommended that future studies focus on operationalising and distinguishing these constructs from each other and from traditional health-status measures. A clear empirical basis for generating instrument items and for prioritising specific domains must be described. Researchers should consider using the data gathered during their first interviews as a springboard from which to test their ideas of HR-QOL and QOL, reformulate concepts and subsequently retest their notions before developing instruments. Related to methodological challenges, consistency and agreement are still used interchangeably when comparing child and parent reports of children's HR-QOL. The Pearson correlation is a measure of co-variation in scores, and not a measure of agreement. We recommend that researchers focus on determining agreement as opposed to consistency. Few, if any, attempts have been made to account for the possibility that a response shift may have occurred in the evaluation of HR-QOL. Most studies have compared HR-QOL scores of children with illness with their healthy peers. As such, there is a dearth of knowledge regarding the normative process of adaptation within the context of illness. It is recommended that researchers focus on gathering data using a relative standard of comparison. We further recommend that researchers interpret HR-QOL data in line with their intended purpose. Regarding developmental consideration, particular attention ought to be paid to developing instruments that consider children's emerging sense of self, cognitive capacity and emotional awareness. Instruments that include items that are age appropriate are more likely to maximise reliability and validity of reports. The results of many HR-QOL instruments are applied in pharmacotherapeutic and pharmacoeconomic assessments. However, there has been relative infrequent application of economically valid HR-QOL tools (utility scales) and the use of HR-QOL scales as outcome measures in paediatric drug trials. As such, few cost-utility analyses have been performed to inform paediatric decision making. In addition, many of the concerns in the development of HR-QOL instruments should also be applied to the utility scales such that they reflect adequately children's preferences for health states.

Factors associated with the use of complementary and alternative medicine in juvenile idiopathic arthritis.

OBJECTIVE: To describe the frequency of complementary and alternative medicine (CAM) use in patients with juvenile idiopathic arthritis (JIA) and to explore whether CAM was associated with patient-specific characteristics, parent-specific characteristics, and medical management factors. METHODS: Parents of children with JIA completed questionnaires that addressed the use of CAM, adherence and perceived problems, parental distress, and coping with childhood illness. Clinical variables were abstracted from the patients' medical files. RESULTS: One hundred-eighteen children with JIA, mean +/- SD age of 10.4 +/- 3.9 years and mean +/- SD disease duration of 4.5 +/- 3.5 years, participated in the study. Ever use of CAM was 33.9% and was higher in patients whose parents used CAM (odds ratio [OR] 5.1, 95% confidence interval [95% CI] 1.4-19.5) and among those who considered themselves as "Canadian" as opposed to belonging to a specific ethnic group (OR 10. 7, 95% CI 1.2-99.8). Adherence to conventional treatment was high for both users and nonusers of CAM. CONCLUSION: Use of CAM is common among patients with JIA. CAM use is not related to any decrease in adherence to conventional medical treatment.

Pediatric adherence as a multidimensional and dynamic construct, involving a triadic partnership.

OBJECTIVE: The aim of this paper is to integrate and draw attention to research findings that support our conceptualization of adherence as being multidimensional, dynamic, and involving a triadic partnership. METHODS: A review of relevant articles found in Medline, PsychLit, and reference lists provided in pertinent articles was performed. RESULTS: Significant progress has been made in identifying disease-related and psychosocial correlates of pediatric adherence and in developing intervention programs to promote adherence. Both lines of work have proceeded without a unifying framework for conceptualizing and measuring pediatric adherence. We offer a model that views adherence as comprising three defining aspects: (a) multidimensional, in support of the complexity and interrelatedness of treatment components, (b) a triadic partnership, as in mutually influential exchanges within and among the caregiver-medical team, child-medical team, and caregiver-child relationships, and (c) dynamic in relation to the notion of changes in developmental adaptive capacity, contextual characteristics, and disease course. CONCLUSIONS: Much work has yet to be done to validate, refine, and extend our model of adherence. Recommendations are offered for assessing each defining aspect, and a group-based methodology that accommodates longitudinal, prospective data is described.

Patient-physician discordance in fibromyalgia.

OBJECTIVE: Discordance between patients' and physicians' health perceptions and satisfaction with the office visit in fibromyalgia (FM) has not been examined. We investigated this phenomenon to identify demographic, clinical, and psychosocial factors associated with patient-physician discordance on physical functioning, well being, and satisfaction with the office visit. METHODS: A sample of 182 women were examined by a rheumatologist to confirm the FM diagnosis. Patients and physicians independently completed the Patient-Physician Discordance Scale to assess perceptions of health and satisfaction with the office visit. Patients also completed questionnaires pertaining to sociodemographics, social support, disability, perceived stress, and psychological distress following the office visit. Separate generalized estimating equations with forward selection, controlling for the possible dependence of outcomes among patients of same physician, were modeled for each measure of discordance. RESULTS: The highest discordance score was on satisfaction with the office visit; physicians systematically underestimated patients' level of satisfaction. Higher levels of satisfaction with social support (p < 0.02) and more psychological distress (p < 0.03) were marginally associated with greater discordance on physical functioning. Higher levels of satisfaction with social support (p < 0.003), younger age (p < 0.02), and lower disability (p < 0.03) were associated with greater discordance on well being. More sexual abuse (p < 0.01) was significantly associated with more discordance on satisfaction with the office visit. CONCLUSION: There is a gap between what patients with FM and rheumatologists examining them experience during the office visit. Psychosocial factors contribute to our understanding of discordance on physical functioning, well being, and satisfaction.

The role of functional social support in treatment retention and outcomes among outpatient adult substance abusers.

AIMS: The goals of this study were: (1) to compare patients with high and low functional social support at intake and 6 months later on various risk factors; (2) to test the stress-buffering role of functional social support on treatment outcomes, and (3) to determine whether levels of functional social support at intake predicted treatment retention. DESIGN: Consecutive admissions to an outpatient treatment program were assessed at intake (n = 206) and at 6 month follow-up (n = 172) using the Addition Severity Index (ASI). Patients completed questionnaires pertaining to social support, stress and psychological functioning both at intake and at 6 months. FINDINGS: Both high and low social support groups experienced marked declines in negative affect and in the severity of substance abuse over time. There were some group differences: for example, symptoms of depression and psychological distress were higher among patients with low social support at intake and at 6 months. Patients with low social support at intake reported higher severity of alcohol and drug abuse at 6 months. Hierarchical regression analyses showed that functional social support was a modest predictor of reductions in the severity of alcohol abuse at follow-up, after controlling for the number of days in treatment. Higher levels of social support explained a modest (6%) proportion of the variance in alcohol-related outcomes, but did not predict reductions in drug abuse. Survival analysis demonstrated that the rate of dropping out of treatment was significantly higher for patients with low social support. CONCLUSIONS: Higher functional social support at intake is a positive predictor of retention in treatment, and a modest predictor of reductions in alcohol intake, but not in drug use. Overall, social support accounts for a small percentage of the variance in drug/alcohol-related outcomes, underscoring the need for further research into variables accounting for treatment success and failure.