Response shift results of quantitative research using patient-reported outcome measures: a descriptive systematic review.

PURPOSE: The objective of this systematic review was to describe the prevalence and magnitude of response shift effects, for different response shift methods, populations, study designs, and patient-reported outcome measures (PROM)s. METHODS: A literature search was performed in MEDLINE, PSYCINFO, CINAHL, EMBASE, Social Science Citation Index, and Dissertations & Theses Global to identify longitudinal quantitative studies that examined response shift using PROMs, published before 2021. The magnitude of each response shift effect (effect sizes, R-squared or percentage of respondents with response shift) was ascertained based on reported statistical information or as stated in the manuscript. Prevalence and magnitudes of response shift effects were summarized at two levels of analysis (study and effect levels), for recalibration and reprioritization/reconceptualization separately, and for different response shift methods, and population, study design, and PROM characteristics. Analyses were conducted twice: (a) including all studies and samples, and (b) including only unrelated studies and independent samples. RESULTS: Of the 150 included studies, 130 (86.7%) detected response shift effects. Of the 4868 effects investigated, 793 (16.3%) revealed response shift. Effect sizes could be determined for 105 (70.0%) of the studies for a total of 1130 effects, of which 537 (47.5%) resulted in detection of response shift. Whereas effect sizes varied widely, most median recalibration effect sizes (Cohen's d) were between 0.20 and 0.30 and median reprioritization/reconceptualization effect sizes rarely exceeded 0.15, across the characteristics. Similar results were obtained from unrelated studies. CONCLUSION: The results draw attention to the need to focus on understanding variability in response shift results: Who experience response shifts, to what extent, and under which circumstances?

Predictors of preparedness for recovery following colorectal cancer surgery: a latent class trajectory analysis.

AIM: With an interest in providing knowledge for person-centred care, our overall goal is to contribute a greater understanding of diversity among patients in terms of their preparedness before and up to six months after colorectal cancer surgery. Our aim was to describe and provide a tentative explanation for differences in preparedness trajectory profiles. MATERIAL AND METHODS: The study was explorative and used prospective longitudinal data from a previously published intervention study evaluating person-centred information and communication. The project was conducted at three hospitals in Sweden. Patient-reported outcomes measures, including the Longitudinal Preparedness for Colorectal Cancer Surgery Questionnaire, were collected before surgery, at discharge, and four to six weeks, three months, and six months after surgery. Clinical data were retrospectively obtained from patients' medical records. We used latent class growth models (LCGMs) to identify latent classes that distinguish subgroups of patients who represent different preparedness trajectory profiles. To determine the most plausible number of latent classes, we considered statistical information about model fit and clinical practice relevance. We used multivariable regression models to identify variables that explain the latent classes. RESULTS: The sample (N = 488) comprised people with a mean age of 68 years (SD = 11) of which 44% were women. Regarding diagnoses, 60% had colon cancer and 40% rectal cancer. The LCGMs identified six latent classes with different preparedness for surgery and recovery trajectories. The latent classes were predominantly explained by differences in age, sex, physical classification based on comorbidities, treatment hospital, global health status, distress, and sense of coherence (comprehensibility and meaningfulness). CONCLUSION: Contrary to the received view that emphasizes standardized care practices, our results point to the need for adding person-centred and tailored approaches that consider individual differences in how patients are prepared before and during the recovery period related to colorectal cancer surgery.

Validation of an Adapted Version of the Veterans RAND 12-Item Health Survey for Older Adults Living in Long-Term Care Homes.

BACKGROUND AND OBJECTIVES: The Veterans RAND 12-Item Health Survey (VR-12) is a generic patient-reported outcome measure of physical and mental health status. An adapted version of the VR-12 was developed for use with older adults living in long-term residential care (LTRC) homes in Canada: VR-12 (LTRC-C). This study aimed to evaluate the psychometric validity of the VR-12 (LTRC-C). RESEARCH DESIGN AND METHODS: Data for this validation study were collected via in-person interviews for a province-wide survey of adults living in LTRC homes across British Columbia (N = 8,657). Three analyses were conducted to evaluate validity and reliability: (1) confirmatory factor analyses were conducted to validate the measurement structure; (2) correlations with measures of depression, social engagement, and daily activities were examined to evaluate convergent and discriminant validity; and (3) Cronbach's alpha (r) statistics were obtained to evaluate internal consistency reliability. RESULTS: A measurement model with 2 correlated latent factors (representing physical health and mental health), 4 cross-loadings, and 4 correlated items resulted in an acceptable fit (root-mean-square error of approximation = 0.07; comparative fit index = 0.98). Physical and mental health were correlated in expected directions with measures of depression, social engagement, and daily activities, though the magnitudes of the correlations were quite small. Internal consistency reliability was acceptable for physical and mental health (r > 0.70). DISCUSSION AND IMPLICATIONS: This study supports the use of the VR-12 (LTRC-C) to measure perceived physical and mental health among older adults living in LTRC homes.

Accuracy of mixture item response theory models for identifying sample heterogeneity in patient-reported outcomes: a simulation study.

PURPOSE: Mixture item response theory (MixIRT) models can be used to uncover heterogeneity in responses to items that comprise patient-reported outcome measures (PROMs). This is accomplished by identifying relatively homogenous latent subgroups in heterogeneous populations. Misspecification of the number of latent subgroups may affect model accuracy. This study evaluated the impact of specifying too many latent subgroups on the accuracy of MixIRT models. METHODS: Monte Carlo methods were used to assess MixIRT accuracy. Simulation conditions included number of items and latent classes, class size ratio, sample size, number of non-invariant items, and magnitude of between-class difference in item parameters. Bias and mean square error in item parameters and accuracy of latent class recovery were assessed. RESULTS: When the number of latent classes was correctly specified, the average bias and MSE in model parameters decreased as the number of items and latent classes increased, but specification of too many latent classes resulted in modest decrease (i.e., < 10%) in the accuracy of latent class recovery. CONCLUSION: The accuracy of MixIRT model is largely influenced by the overspecification of the number of latent classes. Appropriate choice of goodness-of-fit measures, study design considerations, and a priori contextual understanding of the degree of sample heterogeneity can guide model selection.

Patient-Reported Outcomes Measurement in Radiation Oncology: Interpretation of Individual Scores and Change over Time in Clinical Practice.

Tools for measuring patients' perceived health and quality of life, such as patient-reported outcome measures (PROMs), inform clinical decisions for patients requiring radiation therapy. However, there may be inconsistencies in how patients interpret and respond to PROMs due to cultural, environmental, personal, or experiential factors. Differential item functioning (DIF) and response shift (RS) refer to differences in the meaning of PROMs between patients or over time (respectively). DIF and RS can threaten the accurate interpretation and use of PROMs, potentially resulting in erroneous conclusions about effectiveness, and flawed individual-level clinical decision-making. Given the empirical evidence of DIF and RS, we aim to review clinical implications and solutions for addressing DIF and RS by providing vignettes from collaborative examinations with workshop participants, as well as the literature. By making these methodological concepts accessible and relevant, for practice, clinicians may feel more confident to ask clarifying questions of patients when PROM scores and the contextual patient information do not align. PROM scores need to be interpreted via dialogue with the patient to avoid misinterpretation due to DIF and RS, which could diminish patient-clinician communication and impede shared decision-making. This work is part of an interdisciplinary knowledge translation initiative focused on the interpretation of PROM scores by clinically-oriented audiences.

Self-Perceived Competence of Nurses and Care Aides Providing a Palliative Approach in Home, Hospital, and Residential Care Settings: A Cross-Sectional Survey.

BACKGROUND AND PURPOSE: A palliative approach involves adapting and integrating palliative care knowledge and expertise earlier on and across sectors of care for people who have life-limiting chronic conditions. This study explored the extent to which nurses' and care aides' self-perceived palliative care competence may explain variation in the application of a palliative approach across nursing care settings that do not specialize in palliative care. A secondary objective was to psychometrically evaluate an instrument for measuring self-perceived palliative care competence.Methods and procedures: Data were collected via a cross-sectional survey (N = 1468) of registered nurses, licensed practical nurses, and care aides at 114 randomly selected hospital-based medical units, home care offices, and residential care facilities. The questionnaire included the Palliative Care Nursing Self-Competence Scale. Multilevel logistic regression and multigroup confirmatory factor analyses were conducted. RESULTS: In addition to self-perceived competence, factors associated with a palliative approach include identification of patients who have life-limiting conditions and who would benefit from a palliative approach, and work environment. The psychometric analyses of the Palliative Care Nursing Self-Competence Scale confirmed a 10-dimensional structure, strong internal consistency reliability, and measurement equivalence.Discussion and conclusion: This study provides information for future development and research on interventions for integrating a palliative approach.

The Association of Residential Instability and Hospitalizations among Homeless and Vulnerably Housed Individuals: Results from a Prospective Cohort Study.

The present study examined the association of residential instability with hospitalizations among homeless and vulnerably housed individuals over a 4-year time period. Survey data were linked to administrative records on hospitalizations. Specifically, we used data from the Health and Housing in Transition study, a prospective cohort study that tracked the health and housing status of homeless and vulnerably housed individuals in Canada. Responses from Vancouver-based participants (n = 378) from baseline and 3 follow-ups were linked to their administrative health records on hospitalizations (Discharge Abstract Database - Hospital Separation Files; 2008-2012). A generalized estimating equations model was used to examine associations between the number of residential moves and any hospitalizations during each year (none versus ≥ 1 hospitalizations). Analyses included demographic and health variables. Survey data were collected via structured interviews. Hospitalizations were derived from provincial administrative health records. A higher number of residential moves were associated with hospitalization over the study period (adjusted odds ratio: 1.14; 95% confidence interval: 1.01, 1.28). Transgender, female gender, perceived social support, better self-reported mental health, and having ≥ 3 chronic health conditions also predicted having been hospitalized over the study period, whereas high school/higher education was negatively associated with hospitalizations. Our results indicate that residential instability is associated with increased risk of hospitalization, illustrating the importance of addressing housing as a social determinant of health.

Initial Validation of a Patient-Reported Measure of Compassion: Determining the Content Validity and Clinical Sensibility among Patients Living with a Life-Limiting and Incurable Illness.

BACKGROUND: Although compassionate care is considered a cornerstone of quality palliative care, there is a paucity of valid and reliable measures to study, assess, and evaluate how patients experience compassion/compassionate care in their care. OBJECTIVE: The aim was to develop a patient-reported compassion measure for use in research and clinical practice with established content-related validity evidence for the items, question stems, and response scale. METHODS: Content validation for an initial 109 items was conducted through a two-round modified Delphi technique, followed by cognitive interviews with patients. A panel of international Subject Matter Experts (SMEs) and a Patient Advisory Group (PAG) assessed the items for their relevancy to their associated domain of compassion, yielding an Item-level Content Validity Index (I-CVI), which was used to determine content modifications. The SMEs and the PAG also provided narrative feedback on the clarity, flow, and wording of the instructions, questions, and response scale, with items being modified accordingly. Cognitive interviews were conducted with 16 patients to further assess the clarity, comprehensibility, and readability of each item within the revised item pool. RESULTS: The first round of the Delphi review produced an overall CVI of 72% among SMEs and 80% among the PAG for the 109 items. Delphi panelists then reviewed a revised measure containing 84 items, generating an overall CVI of 84% for SMEs and 86% for the PAG. Sixty-eight items underwent further testing via cognitive interviews with patients, resulting in an additional 14 items being removed. CONCLUSIONS: Having established this initial validity evidence, further testing to assess internal consistency, test-retest reliability, factor structure, and relationships to other variables is required to produce the first valid, reliable, and clinically informed patient-reported measure of compassion.

More comprehensively measuring quality of life in life-threatening illness: the McGill Quality of Life Questionnaire - Expanded.

BACKGROUND: Domains other than those commonly measured (physical, psychological, social, and sometimes existential/spiritual) are important to the quality of life of people with life-threatening illness. The McGill Quality of Life Questionnaire (MQOL) - Revised measures the four common domains. The aim of this study was to create a psychometrically sound instrument, MQOL - Expanded, to comprehensively measure quality of life by adding to MQOL-Revised the domains of cognition, healthcare, environment, (feeling like a) burden, and possibly, finance. METHODS: Confirmatory factor analyses were conducted on three datasets to ascertain whether seven new items belonged with existing MQOL-Revised domains, whether good model fit was obtained with their addition as five separate domains to MQOL-Revised, and whether a second-order factor representing overall quality of life was present. People with life-threatening illnesses (mainly cancer) or aged > 80 were recruited from 15 healthcare sites in seven Canadian provinces. Settings included: palliative home care and inpatient units; acute care units; oncology outpatient clinics. RESULTS: Good model fit was obtained when adding each of the five domains separately to MQOL-Revised and for the nine correlated domains. Fit was acceptable for a second-order factor model. The financial domain was removed because of low importance. The resulting MQOL-Expanded is a 21-item instrument with eight domains (fit of eight correlated domains: Comparative Fit Index = .96; Root Mean Square Error of Approximation = .033). CONCLUSIONS: MQOL-Expanded builds on MQOL-Revised to more comprehensively measure the quality of life of people with life-threatening illness. Our analyses provide validity evidence for the MQOL-Expanded domain and summary scores; the need for further validation research is discussed. Use of MQOL-Expanded will enable a more holistic understanding of the quality of life of people with a life-threatening illness and the impact of treatments and interventions upon it. It will allow for a better understanding of less commonly assessed but important life domains (cognition, healthcare, environment, feeling like a burden) and their relationship to the more commonly assessed domains (physical, psychological, social, existential/spiritual).

Concurrent Disorders and Health Care Utilization Among Homeless and Vulnerably Housed Persons in Canada.

OBJECTIVE: Individuals who are homeless or vulnerably housed have a higher prevalence of concurrent disorders, defined as having a mental health diagnosis and problematic substance use, compared to the general housed population. The study objective was to investigate the effect of having concurrent disorders on health care utilization among homeless or vulnerably housed individuals, using longitudinal data from the Health and Housing in Transition Study. METHODS: In 2009, 1190 homeless or vulnerably housed adults were recruited in Ottawa, Toronto, and Vancouver, Canada. Participants completed baseline interviews and four annual follow-up interviews, providing data on sociodemographics, housing history, mental health diagnoses, problematic drug use with the Drug Abuse Screening Test (DAST-10), problematic alcohol use with the Alcohol Use Disorders Identification Test (AUDIT), chronic health conditions, and utilization of the following health care services: emergency department (ED), hospitalization, and primary care. Concurrent disorders were defined as the participant having ever received a mental health diagnosis at baseline and having problematic substance use (i.e., DAST-10 ≥ 6 and/or AUDIT ≥ 20) at any time during the study period. Three generalized mixed effects logistic regression models were used to examine the independent association of having concurrent disorders and reporting ED use, hospitalization, or primary care visits in the past 12 months. RESULTS: Among our sample of adults who were homeless or vulnerably housed, 22.6% (n = 261) reported having concurrent disorders at baseline. Individuals with concurrent disorders had significantly higher odds of ED use (adjusted odds ratio [AOR] = 1.71; 95% confidence interval [CI], 1.4-2.11), hospitalization (AOR = 1.45; 95% CI, 1.16-1.81), and primary care visits (AOR = 1.34; 95% CI, 1.05-1.71) in the past 12 months over the four-year follow-up period, after adjusting for potential confounders. CONCLUSIONS: Concurrent disorders were associated with higher rates of health care utilization when compared to those without concurrent disorders among homeless and vulnerably housed individuals. Comprehensive programs that integrate mental health and addiction services with primary care as well as community-based outreach may better address the unmet health care needs of individuals living with concurrent disorders who are vulnerable to poor health outcomes.

The use of latent variable mixture models to identify invariant items in test construction.

PURPOSE: Patient-reported outcome measures (PROMs) are frequently used in heterogeneous patient populations. PROM scores may lead to biased inferences when sources of heterogeneity (e.g., gender, ethnicity, and social factors) are ignored. Latent variable mixture models (LVMMs) can be used to examine measurement invariance (MI) when sources of heterogeneity in the population are not known a priori. The goal of this article is to discuss the use of LVMMs to identify invariant items within the context of test construction. METHODS: The Draper-Lindely-de Finetti (DLD) framework for the measurement of latent variables provides a theoretical context for the use of LVMMs to identify the most invariant items in test construction. In an expository analysis using 39 items measuring daily activities, LVMMs were conducted to compare 1- and 2-class item response theory models (IRT). If the 2-class model had better fit, item-level logistic regression differential item functioning (DIF) analyses were conducted to identify items that were not invariant. These items were removed and LVMMs and DIF testing repeated until all remaining items showed MI. RESULTS: The 39 items had an essentially unidimensional measurement structure. However, a 1-class IRT model resulted in many statistically significant bivariate residuals, indicating suboptimal fit due to remaining local dependence. A 2-class LVMM had better fit. Through subsequent rounds of LVMMs and DIF testing, nine items were identified as being most invariant. CONCLUSIONS: The DLD framework and the use of LVMMs have significant potential for advancing theoretical developments and research on item selection and the development of PROMs for heterogeneous populations.

Self-Reported Ability to Walk, Run, and Lift Objects among Older Canadians.

Aims. The purpose of the study was to develop new self-report instruments to measure the ability to walk, run, and lift objects and describe the distribution of these abilities among older Canadians. Methods. Questions were developed following a focus group. We carried out an online survey among members of the Canadian Association of Retired Persons. The distribution of each ability was described and presented graphically according to age, sex, and number of health conditions. We calculated summary scores for each ability and assessed their reliability and relationships with health status and use of health services. Results. 22% of the subjects reported difficulty walking 100 m, 15% were unable to run 10 m, and 50% had difficulty lifting 10 kg. Men reported higher abilities than women but differences according to age were small. Test-retest reliability ranged from 0.89 for walking to 0.88 for running and 0.81 for lifting. Scores for the three measures correlated with other measures of health status as expected. Conclusions. The study provided new data on self-reported walking, running, and lifting abilities among older Canadians. The new measures are valid, reliable, and easy to interpret. We expect these measures to be useful in clinical and research settings.

Measuring the quality of life of people at the end of life: The McGill Quality of Life Questionnaire-Revised.

BACKGROUND: The McGill Quality of Life Questionnaire has been widely used with people with life-threatening illnesses without modification since its publication in 1996. With use, areas for improvement have emerged; therefore, various minor modifications were tested over time. AIM: To revise the McGill Quality of Life Questionnaire (McGill Quality of Life Questionnaire-Revised) while maintaining or improving its psychometric properties and length, keeping it as close as possible to the McGill Quality of Life Questionnaire to enable reasonable comparison with existing McGill Quality of Life Questionnaire literature. DESIGN: Data sets from eight studies were used (four studies originally used to develop the McGill Quality of Life Questionnaire, two to develop new McGill Quality of Life Questionnaire versions, and two with unrelated purposes). The McGill Quality of Life Questionnaire-Revised was developed using analyses of measurement invariance, confirmatory factor analysis, and calculation of correlations with the McGill Quality of Life Questionnaire's global quality of life item. SETTING/PARTICIPANTS: Data were from 1702 people with life-threatening illnesses recruited from acute and palliative care units, palliative home care services, and oncology and HIV/AIDS outpatient clinics. RESULTS: The McGill Quality of Life Questionnaire-Revised consists of 14 items (plus the global quality of life item). A new Physical subscale was created combining physical symptoms and physical well-being and a new item on physical functioning. The Existential subscale was reduced to four items. The revised Support subscale, renamed Social, focuses more on relationships. The Psychological subscale remains unchanged. Confirmatory factor analysis results provide support for the measurement structure of the McGill Quality of Life Questionnaire-Revised. The overall scale has good internal consistency reliability ( α = 0.94). CONCLUSION: The McGill Quality of Life Questionnaire-Revised improves on and can replace the McGill Quality of Life Questionnaire since it contains improved wording, a somewhat expanded repertoire of concepts with fewer items, and a single subscale for the physical domain, while retaining good psychometric properties.

Variations in Care Quality Outcomes of Dying People: Latent Class Analysis of an Adult National Register Population.

CONTEXT: Symptom relief is a key goal of palliative care. There is a need to consider complexities in symptom relief patterns for groups of people to understand and evaluate symptom relief as an indicator of quality of care at end of life. OBJECTIVES: The aims of this study were to distinguish classes of patients who have different symptom relief patterns during the last week of life and to identify predictors of these classes in an adult register population. METHODS: In a cross-sectional retrospective design, data were used from 87,026 decedents with expected deaths registered in the Swedish Register of Palliative Care in 2011 and 2012. Study variables were structured into patient characteristics, and processes and outcomes of quality of care. A latent class analysis was used to identify symptom relief patterns. Multivariate multinomial regression analyses were used to identify predictors of class membership. RESULTS: Five latent classes were generated: "relieved pain," "relieved pain and rattles," "relieved pain and anxiety," "partly relieved shortness of breath, rattles and anxiety," and "partly relieved pain, anxiety and confusion." Important predictors of class membership were age, sex, cause of death, and having someone present at death, individual prescriptions as needed (PRN) and expert consultations. CONCLUSION: Interindividual variability and complexity in symptom relief patterns may inform quality of care and its evaluation for dying people across care settings.

Measuring Compassion in Healthcare: A Comprehensive and Critical Review.

BACKGROUND: There is international concern about the lack of compassion in healthcare systems. A valid and reliable tool for measuring compassion in healthcare systems and educational institutions is required. This comprehensive and critical narrative synthesis identified and compared existing measures of compassionate care in clinical settings. METHODS: PubMed, MEDLINE, CINAHL and PsycINFO databases and grey literature were searched to identify studies that report information on instruments that measure compassion or compassionate care in clinicians, nurses, healthcare students and patients. Textual qualitative descriptions of included studies were prepared. Instruments were evaluated using the Evaluating Measures of Patient-Reported Outcomes (EMPRO) tool. RESULTS: Nine studies containing information on the Compassion Competence Scale, a self-report instrument that measures compassion competence among Korean nurses; the Compassion Scale, the Compassionate Care Assessment Tool©, and the Schwartz Center Compassionate Care Scale™, patient-reported instruments that measure the importance of healthcare provider compassion; the Compassion Practices Scale, an instrument that measures organisational support for compassionate care; and instruments that measure compassion in educational institutions (instructional quality and a Geriatric Attitudes Scale), were included. Each instrument is associated with significant limitations. Most only measure certain aspects of compassion and lack evidence of adaptability to diverse practice settings. The EMPRO of self-report instruments revealed a lack of psychometric information on measurement reliability, validity, responsiveness and interpretability, respondent, administrative and scoring burden, and use in subpopulations. CONCLUSION: The findings of this narrative synthesis identified an unmet need for a psychometrically validated instrument that comprehensively measures the construct of compassion in healthcare settings.

Longitudinal person-centered measurement: A psychometric evaluation of the Preparedness for Colorectal Cancer Surgery Questionnaire (PCSQ).

OBJECTIVE: The Preparedness for Colorectal Cancer Surgery Questionnaire (PCSQ) was previously developed in Swedish to assess patients' knowledge seeking and sense making capabilities. Aiming to measure preparedness at different phases during the pre-surgery and recovery period, the objectives were to (a) evaluate psychometric properties of the longitudinal PCSQ, (b) establish measurement invariance over time, and (c) describe change in preparedness. METHODS: Elective colorectal cancer surgery patients completed a questionnaire at five time points from pre-surgery until 6 months post-surgery (n=250). The longitudinal PCSQ consists of 23 items measuring four domains: Searching for and making use of information, Understanding and involvement in care, Making sense of recovery, Support and access to care. Psychometric analyses, including confirmatory factor analysis, were applied to evaluate internal consistency reliability and ascertain invariance over time of the measurement structure and parameters. RESULTS: The psychometric analyses revealed good fit of the measurement models, high internal consistency reliability (≥.94), and support for configural, metric and scalar measurement invariance of the four PCSQ domains. Patients reported lower levels of preparedness after surgery than pre-surgery. CONCLUSION: The adapted version of the PCSQ can be used for longitudinal analyses. PRACTICE IMPLICATIONS: The measurement of preparedness is important for evaluating person-centred outcomes before and during recovery from colorectal cancer surgery.

Educating registered nursing and healthcare assistant students in community-based supportive care of older adults: A mixed methods study.

BACKGROUND: Collaborative education that prepares nursing and healthcare assistant students in supportive care for older adults living at home with advanced chronic illness is an important innovation to prepare the nursing workforce to meet the needs of this growing population. OBJECTIVES: To explore whether a collaborative educational intervention could develop registered nursing and healthcare assistant students' capabilities in supportive care while enhancing care of clients with advanced chronic illness in the community. DESIGN: Mixed method study design. SETTING: A rural college in Canada. PARTICIPANTS: Twenty-one registered nursing and 21 healthcare assistant students completed the collaborative workshop. Eight registered nursing students and 13 healthcare assistant students completed an innovative clinical experience with fifteen clients living with advanced chronic illness. METHODS: Pre and post-test measures of self-perceived competence and knowledge in supportive care were collected at three time points. Semi-structured interviews were conducted to evaluate the innovative clinical placement. RESULTS: Application of Friedman's test indicated statistically significant changes on all self-perceived competence scores for RN and HCA students with two exceptions: the ethical and legal as well as personal and professional issues domains for HCA students. Application of Friedman's test to self-perceived knowledge scores showed statistically significant changes in all but one domain (interprofessional collaboration and communication) for RN students and all but three domains for HCA students (spiritual needs, ethical and legal issues, and inter-professional collaboration and communication). Not all gains were sustained until T-3. The innovative community placement was evaluated positively by clients and students. CONCLUSIONS: Collaborative education for nursing and healthcare assistant students can enhance self-perceived knowledge and competence in supportive care of adults with advanced chronic illness. An innovative clinical experience can maximize reciprocal learning while providing nursing services to a population that is not receiving home-based care.

Multiattribute health utility scoring for the computerized adaptive measure CAT-5D-QOL was developed and validated.

OBJECTIVES: The CAT-5D-QOL is a previously reported item response theory (IRT)-based computerized adaptive tool to measure five domains (attributes) of health-related quality of life. The objective of this study was to develop and validate a multiattribute health utility (MAHU) scoring method for this instrument. STUDY DESIGN AND SETTING: The MAHU scoring system was developed in two stages. In phase I, we obtained standard gamble (SG) utilities for 75 hypothetical health states in which only one domain varied (15 states per domain). In phase II, we obtained SG utilities for 256 multiattribute states. We fit a multiplicative regression model to predict SG utilities from the five IRT domain scores. The prediction model was constrained using data from phase I. We validated MAHU scores by comparing them with the Health Utilities Index Mark 3 (HUI3) and directly measured utilities and by assessing between-group discrimination. RESULTS: MAHU scores have a theoretical range from -0.842 to 1. In the validation study, the scores were, on average, higher than HUI3 utilities and lower than directly measured SG utilities. MAHU scores correlated strongly with the HUI3 (Spearman ρ = 0.78) and discriminated well between groups expected to differ in health status. CONCLUSION: Results reported here provide initial evidence supporting the validity of the MAHU scoring system for the CAT-5D-QOL.

Quality of life themes in Canadian adults and street youth who are homeless or hard-to-house: a multi-site focus group study.

BACKGROUND: The aim of this study was to identify what is most important to the quality of life (QoL) of those who experience homelessness by directly soliciting the views of homeless and hard-to-house Canadians themselves. These individuals live within a unique social context that differs considerably from that of the general population. To understand the life areas that are most important to them, it is critical to have direct input from target populations of homeless and hard-to-house persons. METHODS: Focus groups were conducted with 140 individuals aged 15 to 73 years who were homeless or hard-to-house to explore the circumstances in which they were living and to capture what they find to be important and relevant domains of QoL. Participants were recruited in Toronto, Ottawa, Montreal, and Vancouver. Content analysis was used to analyze the data. RESULTS: Six major content themes emerged: Health/health care; Living conditions; Financial situation; Employment situation; Relationships; and Recreational and leisure activities. These themes were linked to broader concepts that included having choices, stability, respect, and the same rights as other members of society. CONCLUSIONS: These findings not only aid our understanding of QoL in this group, but may be used to develop measures that capture QoL in this population and help programs and policies become more effective in improving the life situation for persons who are homeless and hard-to-house. Quality of life themes in Canadian adults and street youth who are homeless or hard-to-house: A multi-site focus group study.

Injection Drug Use Quality of Life scale (IDUQOL): a validation study.

BACKGROUND: Existing measures of injection drug users' quality of life have focused primarily on health and health-related factors. Clearly, however, quality of life among injection drug users is impacted by a range of unique cultural, socioeconomic, medical, and geographic factors that must also be considered in any measure. The Injection Drug User Quality of Life (IDUQOL) scale was designed to capture the unique and individual circumstances that determine quality of life among injection drug users. The overall purpose of the present study was to examine the validity of inferences made from the IDUQOL by examining the (a) dimensionality, (b) reliability of scores, (c) criterion-related validity evidence, and (d) both convergent and discriminant validity evidence. METHODS: An exploratory factor analysis using principal axis factoring in SPSS 12.0 was conducted to determine whether the use of a total score on the IDUQOL was advisable. Reliability of scores from the IDUQOL was obtained using internal consistency and one-week test-retest reliability estimates. Criterion-related validity evidence was gathered using variables such as stability of housing, sex trade involvement, high-risk injection behaviours, involvement in treatment programs, emergency treatment or overdose over the previous six months, hospitalization and emergency treatment over the subsequent six month period post data collection. Convergent and discriminant validity evidence was gathered using measures of life satisfaction, self-esteem, and social desirability. RESULTS: The sample consisted of 241 injection drug users ranging in age from 19 to 61 years. Factor analysis supports the use of a total score. Both internal consistency (alpha = .88) and one-week test-retest reliability (r = .78) for IDUQOL total scores were good. Criterion-related, convergent, and discriminant validity evidence supports the interpretation of IDUQOL total scores as measuring a construct consistent with quality of life. CONCLUSION: The findings from this study provide initial evidence to support the use of the IDUQOL total score. The results of the study also suggest the IDUQOL could be further strengthened with additional attention to how some IDUQOL domains are described and satisfaction is measured.