Background Research on the optimal management of deceased organ donors poses unique challenges including the fact that one deceased donor may provide up to 8 organs for transplantation. Measuring the post-transplant function of these organs – good or bad – represents an attractive way of deciding whether treatment of deceased donors is working well, or not so well. Function, however, is organ-specific. Therefore, to conduct the most efficient and informative research on deceased donor management, we need an outcome measure that works well in all organs. The new outcome measure is called Generic Rating of Allograft Function post-Transplantation (GRAFT). Methods In this thesis, I highlight the methods for developing the cardiac-specific version of the GRAFT instrument. The same methods, however, have and will be applied to other organ-specific versions. The work comprised various study designs and developed novel research tools, all of which have advanced the development of the GRAFT instrument. At first, we developed a simple conceptualization for the instrument. Through regular consultation with research methodologists, biostatisticians and clinical experts, we refined the fundamental conceptualization and then refined the generic instrument, itself. One key concept is that GRAFT ratings should correlate with one-year graft function. To maximize its utility, I developed a heart--specific guide for applying GRAFT in future studies, and other organ-specific guides are underway. Specifically, we developed these guides by identifying the most robust predictors of one-year graft function through the conduct of organ-specific systematic reviews and meta-analyses of prognostic factors. The evidence from these reviews, in consultation with a focus group of organ-specific transplant physicians, lead to refinements of our guides. We subsequently conducted a mixed-methods user testing to assess reliability and usability of the organ-specific guides. In appraising the evidence informing the guides, we developed GRADE guidance and a novel absolute risk calculator to assess our certainty in the body of evidence on prognostic factors informing our guides. Results We developed a 6-point generic rating instrument for classification of graft function to be applied post-transplant across all major solid organs. We designed GRAFT to be applied at the time of discharge, 1-month post-transplant, or at the time of death (whichever occurs first). We classify function as 1) normal, 2A) impaired but likely to gain normal function, 2B) impaired and unlikely to gain normal function, 3A) severely impaired but likely to gain some function, 3B) severely impaired and unlikely to gain some function, and 4) irreversible graft failure. Clinical expert collaborators for each organ type confirmed face validity of the GRAFT instrument. For all organs, we identified a number of prognostic factors that can guide users in classifying organ function post-transplant. In consultation with clinical experts, we determined that the most important factor is graft function as measured by left ventricular ejection fraction (LVEF) or right atrial pressure (RAP). Due to limitations with the quality and quantity of the evidence, however, the heart transplant experts did not rely on the results of their organ group’s systematic review. In turn, we conducted a retrospective cohort study to calculate the best estimate of association between LVEF, RAP, and overall mortality post heart transplant. For the cardiac version of GRAFT, user testing demonstrated high reliability (Kappa of 0.87, 95% CI 0.62 – 1.00) and acceptable usability (system usability score of 75, inter-quartile range of 72.5 – 80). In the process, we developed and published GRADE guidance for assessing certainty in the body of evidence addressing prognostic factors and devised a calculator to transform relative effect of each prognostic factor to absolute risks (http://hiru.mcmaster.ca/AbsoluteRiskCalculator/). Conclusion In this thesis, I advanced the development of an innovative generic instrument for the classification of graft function specifically for the purpose of application in clinical trials of deceased donor interventions. This work is ongoing, but very advanced for heart-specific components, for which I have ensured face validity, and demonstrated reliability and usability. The GRAFT instrument may better facilitate the conduct of future research to improve care of deceased organ donors with a view to improving quality and quantity of organs for transplantation. / Thesis / Candidate in Philosophy

No description available.

The purpose of this thesis was to investigate the psychometric properties and clinical utility of the Functional Mobility Scale (FMS) for children with cerebral palsy (CP). The FMS quantifies mobility according to the need for assistive devices in different environmental settings. Initially a systematic review was conducted on the psychometric properties and clinical utility of existing evaluative outcome measures that assessed activity limitation in children with CP. Good to excellent reliability was found for all tools. In contrast, the validity and responsiveness of many tools required further investigation. The FMS was the only tool to quantify activity with different assistive devices for a range of environmental settings. A key objective of this thesis was to investigate the reliability, construct, concurrent and discriminative validity, as well as the responsiveness to change of the FMS. (For complete abstract open document)

The Evidence-Based Practice (EBP) movement has gained considerable influence in the healthcare industry, including psychotherapy. The American Psychological Association's (APA) official stance on EBP encouraged clinicians to used standardized outcome measures in routine practice in order to establish the efficacy of their interventions. Routine Outcome Measurement (ROM) systems were designed specifically to accomplish this purpose, and have been shown to improve client outcomes and provide valuable aggregate data that contributes to empirical literature. Despite this research and the endorsement of the APA's official EBP stance, these measures have not been widely adopted by clinicians. Several studies have found that clinicians find the measures impractical and lacking in clinical relevance. In order to accommodate these clinician concerns, while still maintaining the major features of ROM, the Clinically Adaptive Multidimensional Outcome Survey (CAMOS) was developed. The CAMOS employs a unique system that allows clinicians to be able to tailor the measure to the needs of their client, while still maintaining a core of standardized items. The present study attempted to identify a short form of McBride's measurement model, in order to determine which items would form this standardized core. The study found evidence for the validity and reliability of the CAMOS short form. With this evidence, the short form can serve as the basis for the CAMOS's unique tailoring system. It is hoped that the novel features of the CAMOS can help accomplish the APA's goals in relation to EBP.

Introduction: Complex regional pain syndrome (CRPS) is a form of neuropathic pain that sometimes develops after trauma or surgery. While diagnostic criteria have been debated, there is agreement participation in rehabilitation should be the primary management. However, there are gaps in the evidence guiding assessment and treatment choices for individuals with CRPS. The purpose of this thesis was to advance the rehabilitation of CRPS by 1) ongoing development and refinement of evaluations for the specific symptoms of CRPS, and 2) to investigate effectiveness of a new treatment (somatosensory rehabilitation) posited to address allodynia associated with CRPS. Methods: We conducted a series of 4 studies addressing various aspects of CRPS assessment and the somatosensory rehabilitation method: a) a cognitive debriefing study for content validation of the Patient-Reported Hamilton Inventory for CRPS; b) English translation and cultural validation of the Radboud Evaluation of Sensitivity; c) a retrospective cohort study of the effectiveness of somatosensory rehabilitation for allodynia in the upper limb; and d) a pilot study of the somatosensory rehabilitation method to consider the measurement properties of the embedded evaluation tools of allodynography and the rainbow pain scale, and to provide estimates for future controlled trials of effectiveness. Results: The cognitive debriefing study identified potentially problematic items, and constructs which needed enhancement in future versions of the PR-HICRPS assessment. The second paper reported the translation and cultural validation of the RES-E, finding support for test-retest reliability, internal consistency, and preliminary evidence for construct validity and reproducibility. The third paper presented preliminary evidence of a strong effect size for the SRM in an uncontrolled consecutive cohort. Finally, the fourth paper provides an interm analysis of the psychometric properties of allodynography and the rainbow pain scale, and estimates large sample sizes will be required for future trials. Discussion and Conclusion: None of the assessment tools described herein is ready for unrestricted use in clinical practice or research. Although the effect size estimates for somatosensory rehabilitation from the retrospective cohort are encouraging, the incomplete pilot data suggests large, multi-site trials and careful selection of the primary outcome measures will be required for future, rigorous trials of this method. / Dissertation / Doctor of Philosophy (PhD) / Complex regional pain syndrome (CRPS) is a painful collection of symptoms that can develop after trauma. Why it happens is not well understood, but most scientists and health care providers agree that rehabilitation should be the primary focus for managing the painful consequences of this condition. There is a need for simple and accurate ways to assess CRPS, as well as to treat it. Better assessment will support treatment that is more targeted to the symptoms of the individual. One of the very challenging symptoms experienced by persons with CRPS is painful sensitivity of the skin, also known as allodynia. This thesis describes the development and testing of several new patient-reported assessments for CRPS and allodynia, as well as two studies on a new method of treatment for allodynia.

Research elucidating high rates of burnout, depression, and suicide among US clinicians has caused national concern for the sustainability of our healthcare workforce and the quality of patient care. In response, US healthcare organizations are using measures of clinician burnout in new contexts beyond their traditional use in research. Outcome measures of clinician burnout are being used to evaluate health system performance, identify demographic disparities, and educate individual clinicians regarding their own outcomes. Yet, critical gaps in the literature exist regarding the measurement properties of burnout assessments in these contexts and the relationship between clinician distress and healthcare quality. This dissertation contains three studies on measuring clinician distress and its relationship with healthcare quality. Studies 1 and 2 aim to advance what is known regarding the interpretability, reliability, and validity of a commonly used clinician burnout assessment, the Maslach Burnout Inventory-Human Services Survey for Medical Personnel (MBI-HSS). In Study 1, we aimed to improve the interpretation of the MBI-HSS by using item response theory to describe the burnout symptoms and precision associated with MBI-HSS scores in US physicians. We produced response profiles that allow health policy makers and healthcare leaders to relate actionable, qualitative meaning regarding individuals’ and groups’ burnout symptom burden to the MBI-HSS’s quantitative subscale scores. In Study 2, we examined whether demographic disparities in US physician burnout are explained by differences in the MBI-HSS’s functioning across physician age, gender, and specialty groups. Our findings revealed that differences in the MBI-HSS’s functioning across age, gender, and specialty groups did not account for observed disparities, supporting the use of the MBI-HSS as a valid tool for identifying demographic disparities in physician burnout. In Study 3, we examined the association of clinician depression, anxiety, and burnout with the inappropriate use of antibiotic prescriptions for acute respiratory tract infections (RTIs) in a retrospective cohort study of outpatient visits at Boston Medical Center. We found a significant positive association between clinician depression, anxiety, and burnout and inappropriate prescribing for acute RTIs, which depended on the visit location and diagnosis group. Our findings suggest that clinician depression, anxiety, and burnout may play an important role in the quality of routine outpatient care. As federal agencies and healthcare organizations seek to address clinician distress on local and national levels, our findings offer important implications for future assessment and intervention. / 2023-01-19T00:00:00Z

Hearing aid self-efficacy (i.e., beliefs individuals have in their ability to perform the skills needed to be successful hearing aid users) may be related to long-term hearing aid use. The purpose of the present investigation was to determine the audiologic correlates of hearing aid self-efficacy as assessed by the Measure of Audiologic Rehabilitation Self-Efficacy for Hearing Aids (MARS-HA). New and experienced hearing aid users (n = 211) were given the MARS-HA. The results indicated that individuals with moderately severe hearing loss had lower self-efficacy for aided listening conditions than individuals with mild hearing loss. Individuals with poor word recognition abilities in quiet also had lower overall hearing aid self-efficacy than individuals with good to fair word recognition abilities. These results suggested that hearing aid users who have a moderate hearing loss (or worse) and hearing aid users with poor word recognition abilities may require additional counseling and audiologic rehabilitation to increase their hearing aid self-efficacy.

Outcome measurement has been demonstrated to be beneficial when used as a routine part of psychological practice (Lambert et al., 2002), improving both treatment time and outcome of patients, and helping therapists determine which of their patients are not responding to their current treatments (Hannan et al., 2005; Whipple et al., 2003). Despite these proven benefits, many therapists are reluctant to implement and use outcome measures in their routine practice (Hatfield & Ogles, 2007). In addition, the research demonstrating the benefits of these outcome measures has used randomized experimental design to examine the effects of outcome feedback to therapists. The current study focused on examining the benefits of naturalistic usage of outcome measurement feedback in a setting where such measures are a part of routine practice. Therapists' regular use of the feedback from the Outcome Questionnaire-45 was found to have statistical but not clinical significance in the prediction of a patient's symptom change. Additionally, the regularity with which a therapist views a patient's outcome measure feedback was not significantly correlated with that patient's treatment length, overall change in symptoms, or symptom level at termination. Implications regarding these findings are discussed and recommendations regarding the future study of outcome measures are provided.

Children with cerebral palsy (CP) and severe motor and speech impairments face problems in communication. Their capacities may vary across all domains of functioning, including mobility, selfcare and communication, which means these should be assessed independently, using valid and reliable instruments. The assessment of an unobservable construct like language comprehension skills is complicated because the completion of commonly available tests requires speech and motor skills. Using such tests with children with severe motor and speech impairments does not yield a valid, reliable, or representative result. To fill the gap in language assessment instruments, the Computer-Based instrument for Low motor Language Testing (C-BiLLT) was developed in the Netherlands between 2009 and 2014, and introduced intro clinical care in 2015. This test provides an accessible alternative to traditional language tests, allowing participation of children who cannot speak, finger point, or manipulate small objects. The overarching goal of the work in this thesis was to bring the C-BiLLT to Canada and to improve our understanding of the use of the C-BiLLT from a clinician and family perspective. To achieve this goal, the research described in this dissertation addressed objectives related to: 1) the cultural and linguistic adaptation of the test; 2) the psychometric properties of the new version; 3) the implementation of the test; and 4) the concept of family-centred care in relation to the C-BiLLT assessment. Three empirical studies were completed. The adaptation processes (including a validation study) that resulted in the Canadian English version of the C-BiLLT (C-BiLLT CAN) are described in Chapters 2 and 3. To understand the unique implementation attributes of the C-BiLLT, Chapter 5 describes a survey among users about their C-BiLLT use, and Chapter 6 describes an interview study in which clinician behaviours are explored into more detail. Finally, Chapter 7 describes the protocol for a qualitative study using interpretive description to understand parents’ experiences of the C-BiLLT assessment for their child with cerebral palsy and severe motor and speech impairments. The process to develop the C-BiLLT CAN comprised many phases, to ensure the linguistic and conceptual equivalence between the original C-BiLLT and the newly developed version. The benefits of a thorough cross-cultural adaptation process were confirmed by the results of the validity and reliability assessment of the C-BiLLT CAN in typically developing Canadian children. While future research is needed to confirm the feasibility and validity of the test for Canadian children with CP, our study showed that the new version is a robust instrument to assess spoken language comprehension and is available for use in clinical practice. The C-BiLLT CAN is a scientific innovation. How scientific innovations can be best implemented into clinical practice is studied by implementation science. An implementation science lens was applied to the current use of the C-BiLLT in three countries where the test is currently available in clinical practice: The Netherlands, Belgium, and Norway. The survey study described in Chapter 5 demonstrated that clinicians use the test with children with CP (the C-BiLLT’s target population), but also with children who have other diagnoses, including Down’s syndrome and autism spectrum disorder. This study also reported on the barriers and facilitators related to use of the C-BiLLT. We categorized the reported barriers and facilitators into four groups: 1) factors inherent to the C-BiLLT (i.e., its hardware, software, and content); 2) factors related to the child; 3) factors related to the clinician; and 4) factors related to the environment. To gain a better understanding of clinicians’ implementation behaviour and what is needed to facilitate behaviour change, fifteen survey respondents were interviewed individually. The COM-B model (Capability, Opportunity, Motivation – Behaviour) of behaviour change was the theoretical foundation for this study. This model describes how capability, opportunity, and motivation play a role in people’s behaviour. This study taught us how these components of behaviour interacted for clinicians who use, or attempt to use the C-BiLLT in clinical practice. The study highlights the need for support for the clinicians who use the C-BiLLT with children with severe motor and speech impairments. Compared to clinicians who use it with children with other disabilities, this group of clinicians faces more and more complex barriers. The studies described in Chapters 5 and 6 underline the importance of appropriately addressing barriers to C-BiLLT use. The growing emphasis on family-centred care in pediatric rehabilitation services inspired the conceptualization of the concluding study of this thesis, of which the protocol is described in Chapter 7. The aim of the described study is to advance Speech-Language Pathology (SLP) disciplinary knowledge around family-centred assessment for children with CP and severe motor and speech impairments. The protocol describes how we would like to address this aim by collecting parent experiences of their child’s C-BiLLT assessment. This thesis approached the C-BiLLT from the angles of cross-cultural adaptation, psychometrics, implementation, and family-centred care. The development of the C-BiLLT CAN provides the foundation for standardized and accessible assessment of spoken language comprehension for children with CP in Canada. Theory-informed knowledge translation strategies are suggested that align with real-world practice. Finally, suggestions for incorporating parents’ perspectives into the assessment process help to increase the value of the assessment for children, their families, and clinicians alike. / Dissertation / Doctor of Philosophy (PhD) / Cerebral palsy (CP) is the most common cause of physical disability in children. CP is the result of an injury to the brain before, during, or after birth and before the age of one year. While effects of the brain injury are different for each child, for many children with CP the main effect is difficulty with voluntary movement, including fine movements of the lips and tongue to make speech. Some children with speech difficulties can communicate by pointing or making gestures, but others have such severe movement difficulties that they cannot make those gestures either. These children with severe difficulties might understand what others are saying, but tests of understanding usually require the child to respond with some type of movement, so those tests do not work for children with severe movement limitations. The C-BiLLT, which is short for Computer-Based instrument for Low Motor Language Testing was developed to assess language comprehension in Dutch-speaking children with CP. The child who is being tested does not need to speak or to use other fine movements to respond. Instead, the child can respond using gross motor movements on a touch screen, input switches operated with anybody part, partner-assisted scanning and/or their own access method(s). The C-BiLLT could be useful for many children with CP around the world, but at present it is only available in Dutch and Norwegian. The aim of this study was to make the C-BiLLT suitable for children in Canada. We translated the items from Dutch to English, and replaced some items of the Dutch version so that they were familiar to Canadian children. Our study told us that this new Canadian version of the test worked as well as the Dutch test. We also learned that clinicians liked the test, and used it for children with other disabilities as well. Some clinicians had difficulties using the test, and said they needed more practice. In the future we need to make sure there are opportunities for clinicians to get more training, so they have the skills to give the test to any child who would benefit. One question we still have is how families feel when their child is being tested with the C-BiLLT. Language testing should not be scary or stressful for families or children, and we need to make sure families feel comfortable with any test. Thus, as the last step of this thesis, we designed a future study to ask parents questions about their experiences. We will use results of that study to make the C-BiLLT even more child- and family-friendly.

Using 12-month post treatment Timeline Followback drinking reports, data extrapolated from shorter time windows (e.g., 1 month, 6 months) were used to estimate total annual drinking. The objective was to determine whether data from a shorter time window would provide an estimate of annual drinking sufficiently consistent with the full year report such that it can be used in place of the full report. Data for this study were obtained from problem drinkers who voluntarily participated in a randomized controlled trial of a mail-based intervention. Complete follow-up data were obtained for 467 of the 825 participants who completed a 12-month Timeline Followback of their post intervention drinking. The results of this study suggest that 3 months is the necessary minimum time window to best represent annual posttreatment drinking with alcohol abusers. The major implication of this finding is that alcohol treatment outcome studies can use a shorter posttreatment time window, which is more time and resource efficient, over which to obtain follow-up data with little to no loss in the representativeness of that data.