APPROACH e-PROM system: a user-centered development and evaluation of an electronic patient-reported outcomes measurement system for management of coronary artery disease.

BACKGROUND: Coronary artery disease (CAD) confers increased risks of premature mortality, non-fatal morbidity, and significant impairment in functional status and health-related quality of life. Routine administration of electronic patient-reported outcome measures (PROMs) and its real time delivery to care providers is known to have the potential to inform routine cardiac care and to improve quality of care and patient outcomes. This study describes a user-centered development and evaluation of the Alberta Provincial Project for Outcomes Assessment (APPROACH) electronic Patient Reported Outcomes Measurement (e-PROM) system. This e-PROM system is an electronic system for the administration of PROMs to patients with CAD and the delivery of the summarized information to their care providers to facilitate patient-physician communication and shared decision-making. This electronic platform was designed to be accessible via web-based and hand-held devices. Heuristic and user acceptance evaluation were conducted with patients and attending care providers. RESULTS: The APPROACH e-PROM system was co-developed with patients and care providers, research investigators, informaticians and information technology experts. Five PROMs were selected for inclusion in the online platform after consultations with patient partners, care providers, and PROMs experts: the Seattle Angina Questionnaire, Patient Health Questionnaire, EuroQOL, and Medical Outcomes Study Social Support Survey, and Self-Care of Coronary Heart Disease Inventory. The heuristic evaluation was completed by four design experts who examined the usability of the prototype interfaces. User acceptance testing was completed with 13 patients and 10 cardiologists who evaluated prototype user interfaces of the e-PROM system. CONCLUSION: Both patients and physicians found the APPROACH e-PROM system to be easy to use, understandable, and acceptable. The APPROACH e-PROM system provides a user-informed electronic platform designed to incorporate PROMs into the delivery of individualized cardiac care for persons with CAD.

Evaluation of a New Performance-Based Health Literacy Measurement Tool for Individuals With Chronic Airways Disease.

BACKGROUND: Low health literacy is a global challenge. Health literacy is positively correlated with chronic airways disease desirable outcomes. Despite the importance of health literacy in disease management, current health literacy measurement tools are suboptimal. As part of a multi-stage project to develop a performance-based, disease-specific Vancouver Airways Health Literacy Tool (VAHLT) for individuals with chronic airways disease, this study assessed the relationships between the VAHLT scores and characteristics of patients with chronic airways disease. The primary aim of the study was to provide preliminary evidence of construct validity of the VAHLT. METHODS: A cross-sectional study design was applied. Study subjects were recruited from 6 specialty care clinics to complete the VAHLT measurement tool. Demographic and clinical data, including quality of life and disease control, were collected via validated questionnaires. The study subjects also completed a spirometry test. Inferential analysis was conducted by using mean difference testing and correlational methods. RESULTS: A total of 320 subjects were recruited, and, after imputing missing data, 315 were ultimately analyzed. The subjects were predominantly women (61%), white (83%), had a post-high-school education (74%), and a mean ± SD age of 65.2 ± 13.2 y. Age was significantly negatively correlated with the VAHLT scores (P = .004); the subjects with a post-high school education had significantly higher VAHLT scores than those with a high school education or less (P < .001). No significant sex or ethnicity related differences in VAHLT scores were observed. For clinical outcomes, no significant differences were found between the VAHLT scores and disease severity or measures of quality of life and asthma control. CONCLUSIONS: We report a chronic airways disease-specific health literacy measurement tool developed with the involvement of patients and professionals. Age and education were highly correlated with health literacy, which emphasizes the importance of addressing these factors in health literacy interventions among patients with chronic airways disease.

Valuation of Lost Productivity in Caregivers: A Validation Study.

OBJECTIVE: This study aimed to: (a) adapt the previously validated Valuation of Lost Productivity (VOLP) questionnaire for people with health problems, to a caregiver version to measure productivity losses associated with caregiving responsibilities, and (b) evaluate measurement feasibility and validity of an online version of the caregiver VOLP questionnaire. METHODS: A mixed methods design was utilized. Qualitative methods, such as reviewing existing questionnaires that measured caregiver work productivity losses and performing one-on-one interviews with caregivers, were used for VOLP adaptation and online conversion. Quantitative methods were used to evaluate feasibility and validity of the online VOLP. The Work Productivity and Activity Impairment (WPAI) questionnaire for caregivers was included to compare its absenteeism and presenteeism outcomes and their correlations with VOLP outcomes. RESULTS: When adapting the VOLP for caregivers, our qualitative analysis showed the importance of adding three major components: caregiving time, work productivity loss related to volunteer activities and caregivers' lost job opportunities. A total of 383 caregivers who completed online survey were included in our final quantitative analysis. We found small Spearman rank correlations between VOLP and WPAI, observing a larger correlation between their absenteeism [r = 0.49 (95% confidence interval: 0.37-0.60)] than their presenteeism [r = 0.36 (0.24-0.47)]. Correlations between VOLP outcomes and total caregiving hours were larger for absenteeism [r = 0.38 (0.27-0.47)] than presenteeism [r = 0.22 (0.10-0.34)]. Correlations between WPAI outcomes and total caregiving hours were smaller for absenteeism [r = 0.27 (0.15-0.38)] than presenteeism [r = 0.35 (0.23-0.46)]. CONCLUSION: The study provides evidence of the feasibility and preliminary validity evidence of the adapted VOLP caregiver questionnaire in measuring productivity losses due to caregiving responsibilities, when compared with the results for WPAI and the results from the previous patient-VOLP validation study.

An Integrated Framework to Conceptualize and Develop the Vancouver Airways Health Literacy Tool (VAHLT).

There is currently no comprehensive tool to assess the functional health literacy (HL) skills of chronic airway disease (CAD) patients. The purpose of this article is to describe the development of a new HL measure, the Vancouver Airways Health Literacy Tool (VAHLT). The tool was developed through the following phases: (1) Tool conceptualization, consisting of: (A) a systematic review (SR), (B) focus group sessions with CAD patients to understand barriers and facilitators to CAD management, (C) a survey with key-informants to obtain strategies to mitigate self-management barriers and validate patient-derived topics, and (D) respiratory physicians' review of the topics; (2) Scenario and item development; and (3) Tool testing and content validation. The SR identified the lack of a valid HL measurement tool for CAD patients. Patients provided an initial shortlist of disease-related self-care topics. Key-informants helped to finalize topics for inclusion. Respiratory physicians and patients contributed to the development of a scenario-based questionnaire, which was refined during three rounds of testing to develop a 44-item instrument comprising nine self-management passages. We highlight the holistic process of integrating information from the literature with knowledge gained from key stakeholders into our tool framework. Our approach to stakeholder engagement may be of interest to researchers developing similar tools, and could facilitate the development and testing of HL-based interventions to ultimately improve patient outcomes and reduce the burden on the healthcare system.

An economic valuation technique identified different inpatient care experience as priorities for older Canadians than a traditional approach.

OBJECTIVES: To (1) estimate the relative value of older adults' healthcare experiences based on the Canadian Patient Experience Survey for Inpatient Care (CPES-IC) using an economic valuation technique, and (2) compare the results with those of a conventional key-driver analysis of healthcare experiences based on bivariate correlations. STUDY DESIGN AND SETTING: An online survey of 1,074 Canadians aged 60 and older who had been hospitalized within five years. Participants completed the CPES-IC and a best-worst scaling (BWS) valuation task. BWS data were analyzed using a conditional logit model. These results were compared to a conventional key-driver analysis that estimates importance through Spearman's correlations between experiences and a global rating of overall experience. RESULTS: The valuation approach found that the three experiences most valued by patients were: that staff seemed informed and up-to-date about their hospital care, doctors explained things in a way that they could understand, and that they got all the information they needed about their care and treatment. Three of the top five most valued experiences from the valuation approach were among the top five in the key driver analysis. However, there were noteworthy differences in rank order. CONCLUSION: The results of the valuation exercise can inform local and/or system level quality improvement efforts by identifying priorities from an economic evaluation point of view, which are different than those based on a conventional key-driver analysis. Given the degree of uncertainty in estimates both the rank order and confidence intervals should be used to guide decision-making.

Choosing your partner for the PROM: a review of evidence on patient-reported outcome measures for use in primary and community care.

Patient-reported outcome measures (PROMs) are assessments of health status from the patient's perspective. The systematic and routine collection and use of PROMs in healthcare settings adds value in several ways, including quality improvement and service evaluation. We address the issue of instrument selection for use in primary and/or community settings. Specifically, from the large number of available PROMs, which instrument delivers the highest level of performance and validity? For selected generic PROMs, we reviewed literature on psychometric properties and other instrument features (e.g., health domains captured). Briefly we summarize key strengths of the three PROMs that received the most favourable psycho-metric and overall evaluation. The Short-Form 36 has a number of strengths, chiefly, its strong psychometric properties such as responsiveness. The PROMIS/Global Health Scale scored highly on most criteria and warrants serious consideration, especially as it is free to use. The EQ-5D scored satisfactorily on many criteria and, beneficially, it has a low response burden.

Particularizing spirituality in points of tension: enriching the discourse.

The tremendous growth in nursing literature about spirituality has garnered proportionately little critique. Part of the reason may be that the broad generalizing claims typical of this literature have not been sufficiently explicated so that their particular implications for a practice discipline could be evaluated. Further, conceptualizations that attempt to encompass all possible views are difficult to challenge outside of a particular location. However, once one assumes a particular location in relation to spirituality, then the question becomes how one resolves the tension between what are essentially theological or philosophical commitments and professional commitments. In this study, we discuss the tension between these perspectives using the idea of a responsible nursing response to spiritual pluralism. We then problematize three claims about spirituality in nursing discourse based upon our location as scholars influenced by Christian theological understandings: (i) the claim that all individuals are spiritual; (ii) the claim that human spirituality can be assessed and evaluated; and (iii) the claim that spirituality is a proper domain of nursing's concern and intervention. We conclude by suggesting that the widely shared values of social justice, compassion and human dignity may well serve as a grounding for the critique of spiritual discourses in nursing across particularized positions.

Toward an explanation of observed ethnic differences in youths' tobacco use.

We examined whether differences in smoking rates of Asian and white/Caucasian youth could be explained by personal (gender, employment status, volunteerism, parental education, and income) and social factors including differences in youths' relationships with their parents, extent of enculturation, and exposure to parental or peer smoking. A survey was conducted of a random sample of schools in 2 cities in British Columbia, Canada to obtain data from 3,278 high school students. Results from logistic regression analysis indicated smoking status was explained by place of birth, volunteerism, amount of income received from parents and employers, characteristics of the parental-child relationship, and parental and peer smoking status. Differences in the estimated risks of smoking of Asian youth and white youth were moderated by the youths' willingness to tell their parents about their lives, whether they worked for pay, and whether the Asian youth spoke English at home.

To describe or prescribe: assumptions underlying a prescriptive nursing process approach to spiritual care.

Increasing attention is being paid to spirituality in nursing practice. Much of the literature on spiritual care uses the nursing process to describe this aspect of care. However, the use of the nursing process in the area of spirituality may be problematic, depending upon the understandings of the nature and intent of this process. Is it primarily a descriptive process meant to make visible the nursing actions to provide spiritual support, or is it a prescriptive process meant to guide nursing actions for intervening in the spirituality of patients? A prescriptive nursing process approach implies influencing, and in some cases reframing, the spirituality of patients and thereby extends beyond general notions of spiritual support. In this paper we discuss four problematic assumptions that form the basis for a prescriptive approach to spiritual care. We conclude that this approach extends the nursing role beyond appropriate professional boundaries, making it ethically problematic.

Attributes of spiritual care in nursing practice.

Nurses are increasingly being called on to engage in spiritual care with their patients. A diverse body of theoretical and empirical literature addresses spirituality as it relates to nursing practice, yet there is little consensus about what spiritual nursing care entails. The purpose of this article is to conceptualize spiritual care in relation to nursing practice. A brief historical review indicates that our current understandings of spiritual nursing care have been shaped by three eras characterized by particular approaches: the religious approach, the scientific approach, and the existential approach. We draw elements from each of these approaches to propose attributes of spiritual care in the context of nursing practice. We propose that spiritual nursing care is an intuitive, interpersonal, altruistic, and integrative expression that is contingent on the nurse's awareness of the transcendent dimension of life but that reflects the patient's reality.

An integrative review of the concept of spirituality in the health sciences.

Spirituality is a universal human phenomenon, yet confusion and incomprehension of the concept is ever-present. The purpose of this study was to explore how research on the concept of spirituality has been reported in the health literature in the past decade and develop an ontological and theoretical understanding of spirituality. The examination was based on quantitative and qualitative integrative review approaches, which integrated empirical research on spirituality. The sample included 73 spirituality research articles, which were published in English between January 1990 and September 2000. An electronic data-collection tool was designed for use in this project and formatted using Excel software for transfer of coded data into the NVivo software for the data analysis. The results identified essential elements of spirituality, current use of operational definitions and instruments, conceptual frameworks used in spirituality research, and cultural aspects of spirituality. Historical comparison among decades and barriers in researching spirituality are discussed.

Spiritual caregiving at the juncture of religion, culture, and state.

In response to the increasing social diversity of health-care recipients, nurse scholars have turned their attention to developing theoretical foundations for culturally responsive and spiritually sensitive nursing practice. However, despite the potential overlap between these 2 areas, there has been little exploration of the intersections between culture and spirituality. The authors present the findings of an interpretive descriptive pilot study that examined the contexts of intercultural spiritual caregiving from the perspectives of nurses and chaplains. The findings point to the need for health-care professionals to cultivate an internal space in which to provide spiritual care and to seek spiritual points of connection amidst diverse faith and cultural traditions. The contexts of current practice environments, as well as the social setting of a pluralistic and secular state, shape the dynamics of spiritual caregiving. The findings invite postcolonial, critical analyses of contemporary conceptions of spirituality and spiritual caregiving, and call for a rethinking of the trend towards de-emphasizing creedal religions in the quest for a universal spiritual experience.