Janet L. Welch

Systematic review of health-related quality of life models

BackgroundA systematic literature review was conducted to (a) identify the most frequently used health-related quality of life (HRQOL) models and (b) critique those models.MethodsOnline search engines were queried using pre-determined inclusion and exclusion criteria. We reviewed titles, abstracts, and then full-text articles for their relevance to this review. Then the most commonly used models were identified, reviewed in tables, and critiqued using published criteria.ResultsOf 1,602 titles identified, 100 articles from 21 countries met the inclusion criteria. The most frequently used HRQOL models were: Wilson and Cleary (16%), Ferrans and colleagues (4%), or World Health Organization (WHO) (5%). Ferrans and colleagues’ model was a revision of Wilson and Cleary’s model and appeared to have the greatest potential to guide future HRQOL research and practice.ConclusionsRecommendations are for researchers to use one of the three common HRQOL models unless there are compelling and clearly delineated reasons for creating new models. Disease-specific models can be derived from one of the three commonly used HRQOL models. We recommend Ferrans and colleagues’ model because they added individual and environmental characteristics to the popular Wilson and Cleary model to better explain HRQOL. Using a common HRQOL model across studies will promote a coherent body of evidence that will more quickly advance the science in the area of HRQOL.

When Do We Eat? An Evaluation of Food Items Input into an Electronic Food Monitoring Application

We present a formative study that examines what, when, and how participants in a chronic kidney disease (stage 5) population input food items into an electronic intake monitoring application. Participants scanned food item barcodes or voice recorded food items they consumed during a three week period. The results indicated that a learning curve was associated with barcode scanning; participants with low literacy skills had difficulty describing food items in voice recordings; and participants input food items depending on when they had dialysis treatment. Participants thought this electronic self monitoring application would be helpful for chronically ill populations in their first year of treatment

Mobile interface design for low-literacy populations

Despite the proliferation of mobile health applications, few target low literacy users. This is a matter of concern because 43% of the United States population is functionally illiterate. To empower everyone to be a full participant in the evolving health system and prevent further disparities, we must understand the design needs of low literacy populations. In this paper, we present two complementary studies of four graphical user interface (GUI) widgets and three different cross-page navigation styles in mobile applications with a varying literacy, chronically-ill population. Participants navigation and interaction styles were documented while they performed search tasks using high fidelity prototypes running on a mobile device. Results indicate that participants could use any non-text based GUI widgets. For navigation structures, users performed best when navigating a linear structure, but preferred the features of cross-linked navigation. Based on these findings, we provide some recommendations for designing accessible mobile applications for varying-literacy populations.

Benefits of and Barriers to Dietary Sodium Adherence

Failure to limit dietary sodium leads to thirst, large fluid weight gain, and poor outcomes in patients receiving hemodialysis. Perceived benefits and barriers may influence adherence; however, tools measuring these relationships are not available. This studys purpose, based on the health belief model, was to evaluate the reliability and validity of the Beliefs about Dietary Compliance Scale (BDCS), describe perceived benefits and barriers over time, and identify individual benefits and barriers that may be amenable to tailored interventions. A convenience sample of 229 completed the BDCS at baseline. One week after baseline, 52 participants completed the BDCS to assess test-retest reliability. Four months after baseline, 187 participants (81%) remained. Cronbachs alphas for the scale ranged from .66 to .81. One-week test-retest reliabilities ranged from .68 to .86. Factor structure was supported by factor analysis. Scores remained stable over time. Barriers to dietary sodium limitations were common and more in need of intervention.

Differences in perceptions by stage of fluid adherence.

OBJECTIVE The purpose of this study was to determine in a group of hemodialysis patients whether perceptions of barriers to and benefits of adherence to fluid limitations, perceived seriousness of and susceptibility to the consequences of nonadherence, self-efficacy, and thirst differed by stage of fluid adherence. DESIGN Cross-sectional descriptive design. SETTING There were 147 participants from rural, suburban, and urban outpatient hemodialysis units. RESULTS Significant differences were found in perceived benefits, barriers, seriousness, susceptibility, and thirst intensity by stage of fluid adherence. There were no significant differences in self-efficacy by stage of fluid adherence. CONCLUSION Stage of fluid adherence may be important to consider when designing interventions to reduce fluid intake.

Medication and Dietary Compliance Beliefs in Heart Failure

Patients with heart failure are required to comply with a medication regimen and dietary sodium restrictions. The objectives of this study were to determine the most frequently perceived benefits of and barriers to compliance with medication and dietary sodium restrictions and evaluate the relevancy of these scale items for testing in tailored intervention studies. Data were collected as part of two studies that evaluated the psychometric properties of two questionnaires. The most frequently identified benefit of medication compliance was decreasing the chance of being hospitalized, and the most commonly reported barrier was disruption of sleep. Patients were knowledgeable about the benefits of compliance with dietary sodium restrictions, and the poor taste of food on the low sodium diet was the most common barrier. Heart failure patients perceive benefits of and barriers to compliance with therapeutic regimens that are likely to be amenable to tailored interventions designed to enhance compliance.

Merging health literacy with computer technology: Self-managing diet and fluid intake among adult hemodialysis patients

OBJECTIVE The Dietary Intake Monitoring Application (DIMA) is an electronic dietary self-monitor developed for use on a personal digital assistant (PDA). This paper describes how computer, information, numerical, and visual literacy were considered in development of DIMA. METHODS An iterative, participatory design approach was used. Forty individuals receiving hemodialysis at an urban inner-city facility, primarily middle-aged and African American, were recruited. RESULTS Computer literacy was considered by assessing abilities to complete traditional/nontraditional PDA tasks. Information literacy was enhanced by including a Universal-Product-Code (UPC) scanner, picture icons for food with no UPC code, voice recorder, and culturally sensitive food icons. Numerical literacy was enhanced by designing DIMA to compute real-time totals that allowed individuals to see their consumption relative to their dietary prescription. Visual literacy was considered by designing the graphical interface to convey intake data over a 24-h period that could be accurately interpreted by patients. Pictorial icons for feedback graphs used objects understood by patients. PRACTICE IMPLICATIONS Preliminary data indicate the application is extremely helpful for individuals as they self-monitor their intake. If desired, DIMA could also be used for dietary counseling.

Self-Management Interventions in Stages 1 to 4 Chronic Kidney Disease: An Integrative Review

The prevalence, effect on health outcomes, and economic impact of chronic kidney disease (CKD) have created interest in self-management interventions to help slow disease progression to kidney failure. Seven studies were reviewed to identify knowledge gaps and future directions for research. All studies were published between 2010 and 2013; no investigations were conducted in the United States. Knowledge gaps included the focus on medical self-management tasks with no attention to role or emotional tasks, lack of family involvement during intervention delivery, and an inability to form conclusions about the efficacy of interventions because methodological rigor was insufficient. Educational content varied across studies. Strategies to improve self-management skills and enhance self-efficacy varied and were limited in scope. Further development and testing of theory-based interventions are warranted. There is a critical need for future research using well-designed trials with appropriately powered sample sizes, well-tested instruments, and clear and consistent reporting of results.

Using a mobile application to self‐monitor diet and fluid intake among adults receiving hemodialysis

Hemodialysis patients have difficulty self-managing a complex dietary and fluid regimen. The purpose of this feasibility study was to pilot test an electronic self-monitoring intervention based on social cognitive theory. During a 6-week intervention, 24 participants self-monitored diet and fluid intake using the Dietary Intake Monitoring Application (DIMA), and 20 participants served as controls by monitoring their activity using the Daily Activity Monitor Application (DAMA). Results from this pilot study suggest the intervention is feasible and acceptable, although few significant effects on outcomes were found in this small sample. The DIMA has potential to facilitate dietary and fluid self-monitoring but requires additional refinement and further testing.

A new instrument to measure quality of life of heart failure family caregivers

Background and Purpose:Family caregivers of heart failure (HF) patients experience poor physical and mental health leading to poor quality of life. Although several quality-of-life measures exist, they are often too generic to capture the unique experience of this population. The purpose of this study was to evaluate the psychometric properties of the Family Caregiver Quality of Life (FAMQOL) Scale that was designed to assess the physical, psychological, social, and spiritual dimensions of quality of life among caregivers of HF patients. Sample and Methods:Psychometric testing of the FAMQOL with 100 HF family caregivers was conducted using item analysis, Cronbach &agr;, intraclass correlation, factor analysis, and hierarchical multiple regression guided by a conceptual model. Caregivers were predominately female (89%), white, (73%), and spouses (62%). Results:Evidence of internal consistency reliability (&agr; = .89) was provided for the FAMQOL, with item-total correlations of 0.39 to 0.74. Two-week test-retest reliability was supported by an intraclass correlation coefficient of 0.91. Using a 1-factor solution and principal axis factoring, loadings ranged from 0.31 to 0.78, with 41% of the variance explained by the first factor (eigenvalue = 6.5). With hierarchical multiple regression, 56% of the FAMQOL variance was explained by model constructs (F8,91 = 16.56, P < .001). Criterion-related validity was supported by correlations with SF-36 General (r = 0.45, P < .001) and Mental (r = 0.59, P < .001) Health subscales and Bakas Caregiving Outcomes Scale (r = 0.73, P < .001). Evidence of internal and test-retest reliability and construct and criterion validity was provided for physical, psychological, and social well-being subscales. Conclusions:The 16-item FAMQOL is a brief, easy-to-administer instrument that has evidence of reliability and validity in HF family caregivers. Physical, psychological, and social well-being can be measured with 4-item subscales. The FAMQOL scale could serve as a valuable measure in research, as well as an assessment tool to identify caregivers in need of intervention.