Janet A. Parsons

Uncemented tumor endoprostheses at the knee: root causes of failure.

Although cemented tumor endoprostheses are the most commonly used method for reconstruction of the distal femur or proximal tibia after resection of primary bone tumors, aseptic loosening remains a common complication. Uncemented tumor prostheses may minimize this problem. We investigated the root causes of prosthetic failure for 99 patients with a fixed-hinge, bone-ingrowth Kotz Modular Femur and Tibia Resection System endoprosthesis and compared complications that led to implant failure with results in the literature. Of the 74 distal femoral implants and 25 proximal tibial implants, 25 patients had complications that resulted in prosthetic failure (removal of the prosthesis) at a median of 24.1 (range, 0.8–72.6) months. Failure was caused by prosthesis (n = 18) or oncologic-related (n = 7) complications. However, limb-salvage was possible for 87 of 99 patients. Smaller stem size in the distal femur and longer bone resection length in the proximal tibia were significantly associated with increased risk of prosthetic failure by multivariate analysis. The risk of stem fracture (6 of 99 patients) and infection (10 of 99 patients) was higher than other reports, but aseptic loosening (2 of 99 patients) was uncommon. These results suggest that although the bone-ingrowth surface of this prosthesis leads to a very low aseptic loosening rate, the higher risk of stem fracture and infection must be addressed in future implant designs. Level of Evidence: Therapeutic study, level IV-1 (case series)

Designing a multifaceted survivorship care plan to meet the information and communication needs of breast cancer patients and their family physicians: results of a qualitative pilot study

BackgroundFollowing the completion of treatment and as they enter the follow-up phase, breast cancer patients (BCPs) often recount feeling ‘lost in transition’, and are left with many questions concerning how their ongoing care and monitoring for recurrence will be managed. Family physicians (FPs) also frequently report feeling ill-equipped to provide follow-up care to BCPs. In this three-phase qualitative pilot study we designed, implemented and evaluated a multi-faceted survivorship care plan (SCP) to address the information needs of BCPs at our facility and of their FPs.MethodsIn Phase 1 focus groups and individual interviews were conducted with 35 participants from three stakeholder groups (BCPs, FPs and oncology specialist health care providers (OHCPs)), to identify specific information needs. An SCP was then designed based on these findings, consisting of both web-based and paper-based tools (Phase 2). For Phase 3, both sets of tools were subsequently evaluated via focus groups and interviews with 26 participants. Interviews and focus groups were audio taped, transcribed and content analysed for emergent themes and patterns.ResultsIn Phase 1 patients commented that web-based, paper-based and human resources components were desirable in any SCP. Patients did not focus exclusively on the post-treatment period, but instead spoke of evolving needs throughout their cancer journey. FPs indicated that any tools to support them must distill important information in a user-friendly format. In Phase 2, a pilot SCP was subsequently designed, consisting of both web-based and paper-based materials tailored specifically to the needs of BCPs as well as FPs. During Phase 3 (evaluation) BCPs indicated that the SCP was effective at addressing many of their needs, and offered suggestions for future improvements. Both patients and FPs found the pilot SCP to be an improvement from the previous standard of care. Patients perceived the quality of the BCP-FP relationship as integral to their comfort with FPs assuming follow-up responsibilities.ConclusionsThis pilot multi-component SCP shows promise in addressing the information needs of BCPs and the FPs who care for them. Next steps include refinement of the different SCP components, further evaluation (including usability testing), and planning for more extensive implementation.

Arts-based research and knowledge translation: Some key concerns for health-care professionals

Department of Psychiatry, University of Toronto, Toronto, CanadaINTRODUCTIONThe use of arts-based research methods is relatively newin health care, when compared to other disciplines such aseducation and visual sociology. Arts-based research isgrounded in the tradition of qualitative social science, andreferstotheuseofanyartform(s)atanypointintheresearchprocess, whether for generating, interpreting and/or com-municating knowledge (Knowles & Cole, 2008). Individualswithin and outside of health care recognize that arts-basedmethods illuminate human dimensions of health and illnessin ways that lower disciplinary barriers and improve ourunderstanding of both health and social care. By definition,these methods entail interdisciplinary and interprofessionalcollaboration between the clinical and social sciences, thehumanities and the arts.Arts-based knowledge translation (KT) is concernedwith dissemination and communication of knowledge.Such approaches to KT offer unique ways of engagingdiverse stakeholders on important health-care issues. Arts-based KT initiatives enhance our understanding by focusingon experiential and interactive aspects of illness and healthcare. Furthermore, they can produce important embodiedand affective responses for both participants and audiences,over and above solely enhancing cognitive understandingof a given topic. Invariably, arts-based KT entails colla-boration between individuals not only from diverseprofessional backgrounds (e.g. physicians, nurses, dramatur-gists and filmmakers) but also steeped in disparatedisciplinary sensibilities (e.g. artists and scientists). Theboundary-crossing work of incorporating the humanities,social and medical sciences represents a paradigm shiftwhereby KT is seen as a creative, complex and dynamicprocess, rather than one that is passive or linear.Using artistic expression to disseminate knowledge cantake many forms – visual (e.g. video, photography, andpainting), performative (e.g. drama, dance) or literary (e.g.poetry, fiction). For example, research-based theater hasbeen shown to impact health-care practitioner behavior andperspectives, in fields of oncology, dementia and traumaticbrain injury (Colantonio et al., 2008; Gray, Fitch, Labreque,& Greenberg, 2003; Kontos & Naglie, 2007). Poetry has beenused to translate research findings into accessible formats(Glesne, 1997) and drawing has been used to study andconvey experiences of illness (Guillemin, 2004). These arebut a few examples, suggesting that arts-based modes of KThave a unique and powerful emotional component thatengages target audiences (largely health-care practitioners,patients and their families) on affective and cognitive levelsand are critical to successful educational interventions(Colantonio et al., 2008).EMPLOYING THE ARTS IN KNOWLEDGE TRANSLATIONAlthough arts-based methods are relatively new to healthcare, they are well established in other fields such aseducation and the social sciences (Eisner, 1997; Knowles &Cole, 2008). Individuals both within and outside ofhealth care recognize that arts-based methods illuminatehuman dimensions of health and illness in ways that fostercross-disciplinary collaboration and enhance our under-standing of both health and social care, promotingintersectoral collaboration. The arts offer alternative waysof communicating research findings and best practices.Evoking emotional responses, providing alternative formsof representation, and promoting dialogue and the sharingof stories are made possible by incorporating art forms intoKTstrategies.

What makes community engagement effective?: Lessons from the Eliminate Dengue Program in Queensland Australia.

Background Worldwide, more than 40% of the population is at risk from dengue and recent estimates suggest that up to 390 million dengue infections are acquired every year. The Eliminate Dengue (ED) Program is investigating the use of Wolbachia-infected, transmission-compromised, mosquitoes to reduce dengue transmission. Previous introductions of genetically-modified strategies for dengue vector control have generated controversy internationally by inadequately engaging host communities. Community Engagement (CE) was a key component of the ED Program’s initial open release trials in Queensland Australia. Their approach to CE was perceived as effective by the ED team’s senior leadership, members of its CE team, and by its funders, but if and why this was the case was unclear. We conducted a qualitative case study of the ED Program’s approach to CE to identify and critically examine its components, and to explain whether and how these efforts contributed to the support received by stakeholders. Methodology/Principal Findings In-depth semi-structured interviews were conducted with 24 participants with a range of experiences and perspectives related to the ED Program’s CE activities. Our analytic approach combined techniques of grounded theory and qualitative description. The ED Program’s approach to CE reflected four foundational features: 1) enabling conditions; 2) leadership; 3) core commitments and guiding values; and 4) formative social science research. These foundations informed five key operational practices: 1) building the CE team; 2) integrating CE into management practices; 3) discerning the community of stakeholders; 4) establishing and maintaining a presence in the community; and 5) socializing the technology and research strategy. We also demonstrate how these practices contributed to stakeholders’ willingness to support the trials. Conclusions/Significance Our case study has identified, and explained the functional relationships among, the critical features of the ED Program’s approach to CE. It has also illuminated how these features were meaningful to stakeholders and contributed to garnering support within the host communities for the open-release trials. Our findings reveal how translating ethical intentions into effective action is more socially complex than is currently reflected in the CE literature. Because our case study delineates the critical features of the ED Program’s approach to CE, it can serve as a framework for other programs to follow when designing their own strategies. And because the findings outline a theory of change for CE, it can also serve as a starting point for developing an evaluation framework for CE.

To ‘Get by’ or ‘get help’? A qualitative study of physicians’ challenges and dilemmas when patients have limited English proficiency

Objective Encounters between patients and physicians who do not speak the same language are relatively common in Canada, particularly in urban settings; this trend is increasing worldwide. Language discordance has important effects on health outcomes, including mortality. This study sought to explore physicians’ experiences of care provision in situations of language discordance in depth. Design Qualitative study based on individual interviews. Interview guides elicited physicians’ perspectives on how they determined whether communication could proceed unaided. A descriptive qualitative approach was adopted, entailing inductive thematic analysis. Participants 22 physicians experienced in treating patients in situations of language discordance were recruited from the emergency and internal medicine departments of an urban tertiary-care hospital. Setting Large, inner-city teaching hospital in Toronto, Canada, one of the most linguistically diverse cities internationally. Results Determining when to ‘get by’ or ‘get help’ in order to facilitate communication was described as a fluid and variable process. Deciding which strategy to use depended on three inter-related factors: time/time constraints, acuity of situation and ease of use/availability of translation aids. Participants reported at times feeling conflicted about their decisions, portraying some of these clinical encounters as a ‘troubling space’ in which they experienced one or more dilemmas related to real versus ideal practice, responsibility and informed consent. Conclusions In situations of language discordance, a physicians decision to ‘get by’ (vs ‘get help’) rests on a judgement of whether communication can be considered ‘good enough’ to proceed and depends on the circumstances of the specific encounter. The tension set up between what is ‘ideal’ and what is practically possible can be experienced as a dilemma by physicians. The studys findings have implications for practice and policy not only in Canada but in other multilingual settings, and indicate that physicians require greater support.

Designing and evaluating a web-based self-management site for patients with type 2 diabetes - systematic website development and study protocol

BackgroundGiven that patients provide the majority of their own diabetes care, patient self-management training has increasingly become recognized as an important strategy with which to improve quality of care. However, participation in self management programs is low. In addition, the efficacy of current behavioural interventions wanes over time, reducing the impact of self-management interventions on patient health. Web-based interventions have the potential to bridge the gaps in diabetes care and self-management.MethodsOur objective is to improve self-efficacy, quality of life, self-care, blood pressure, cholesterol and glycemic control and promote exercise in people with type 2 diabetes through the rigorous development and use of a web-based patient self-management intervention. This study consists of five phases: (1) intervention development; (2) feasibility testing; (3) usability testing; (4) intervention refinement; and (5) intervention evaluation using mixed methods. We will employ evidence-based strategies and tools, using a theoretical framework of self-efficacy, then elicit user feedback through focus groups and individual user testing sessions. Using iterative redesign the intervention will be refined. Once finalized, the impact of the website on patient self-efficacy, quality of life, self-care, HbA1c, LDL-cholesterol, blood pressure and weight will be assessed through a non-randomized observational cohort study using repeated measures modeling and individual interviews.DiscussionIncreasing use of the World Wide Web by consumers for health information and ongoing revolutions in social media are strong indicators that users are primed to welcome a new era of technology in health care. However, their full potential is hindered by limited knowledge regarding their effectiveness, poor usability, and high attrition rates. Our development and research agenda aims to address these limitations by improving usability, identifying characteristics associated with website use and attrition, and developing strategies to sustain patient use in order to maximize clinical outcomes.

Arts-based health research and academic legitimacy: transcending hegemonic conventions

Using the Canadian context as a case study, the research reported here focuses on in-depth qualitative interviews with 36 researchers, artists and trainees engaged in ‘doing’ arts-based health research (ABHR). We begin to address the gap in ABHR knowledge by engaging in a critical inquiry regarding the issues, challenges and benefits of ABHR methodologies. Specifically, this paper focuses on the tensions experienced regarding academic legitimacy and the use of the arts in producing and disseminating research. Four central areas of tension associated with academic legitimacy are described: balancing structure versus openness and flexibility; academic obligations of truth and accuracy; resisting typical notions of what counts in academia; and expectations vis-à-vis measuring the impact of ABHR. We argue for the need to reconsider what counts as knowledge and to reconceptualize notions of evaluation and rigor in order to effectively support the effective production and dissemination of ABHR.

Brokered dialogue: A new research method for controversial health and social issues.

BackgroundDialogue is a foundational feature of social life and an important way in which we come to understand one another. In situations of controversy dialogue is often absent because of a range of social barriers. We have developed a new film-based qualitative research method for studying controversial issues in healthcare and social policy. We call this method Brokered Dialogue. Theoretically informed by the traditions in narrative inquiry and visual anthropology, the method is premised on the idea that dialogue possesses features making it unique as a generator of new knowledge and opportunities for social intervention. Film is not only an extraordinarily rich data source, but an excellent medium for knowledge transfer and dissemination.DiscussionThe paper introduces the Brokered Dialogue method. We outline its critical steps, including the procedures for sampling, data collection and data analysis of both textual and visual data. Participants in a Brokered Dialogue engage in filmed interviews that capture their perspectives on a given topic; they then share their perspectives with, and pose questions of, one another through the medium of film. Using a participatory editing process, only footage that participants feel comfortable showing to others is incorporated. This technique offers participants a ‘safe’ space for respectful interaction. The editing process itself is analytic, and the final assembly of footage approximates a dialogue on the topic at hand. A link to a film produced from a project piloting the method is provided to demonstrate its real world application.SummaryBrokered Dialogue is a method for promoting respectful interactions among those with seemingly divergent views on a controversial topic and for discovering critical points of divergence that may represent pathways for improvement. While the end product is a ‘film’, the goal is to have these films used as catalysts for ongoing respectful dialogue and problem-solving concerning the topic at hand informing relevant practice and policy change. In this paper, we consider Brokered Dialogue’s potential future uses and impacts, and how these might be evaluated.

‘Are We Not Human?’ Stories of Stigma, Disability and HIV from Lusaka, Zambia and Their Implications for Access to Health Services

Background The advent of anti-retroviral therapy (ART) in Southern Africa holds the promise of shifting the experience of HIV toward that of a manageable chronic condition. However, this potential can only be realized when persons living with HIV are able to access services without barriers, which can include stigma. Our qualitative study explored experiences of persons living with disabilities (PWD) in Lusaka, Zambia who became HIV-positive (PWD/HIV+). Methods and Findings We conducted interviews with 32 participants (21 PWD/HIV+ and 11 key informants working in the fields of HIV and/or disability). Inductive thematic analysis of interview transcripts was informed by narrative theory. Participants’ accounts highlighted the central role of stigma experienced by PWD/HIV+, with stigmatizing attitudes closely linked to prevailing societal assumptions that PWD are asexual. Seeking diagnostic and treatment services for HIV was perceived as evidence of PWD being sexually active. Participants recounted that for PWD/HIV+, stigma was enacted in a variety of settings, including the queue for health services, their interactions with healthcare providers, and within their communities. Stigmatizing accounts told about PWD/HIV+ were described as having important consequences. Not only did participants recount stories of internalized stigma (with its damaging effects on self-perception), but also that negative experiences resulted in some PWD preferring to “die quietly at home” rather than being subjected to the stigmatizing gaze of others when attempting to access life-preserving ART. Participants recounted how experiences of stigma also affected their willingness to continue ART, their willingness to disclose their HIV status to others, as well as their social relations. However, participants also offered counter-stories, actively resisting stigmatizing accounts and portraying themselves as resilient and resourceful social actors. Conclusions The study highlights a significant barrier to healthcare experienced by PWD/HIV+, with important implications for the future design and equitable delivery of HIV services in Zambia. Stigma importantly affects the abilities of PWD/HIV+ to manage their health conditions.

Evaluation of a toolkit to improve cardiovascular disease screening and treatment for people with type 2 diabetes: protocol for a cluster-randomized pragmatic trial

BackgroundThe gap between the level of care recommended by evidence-based clinical practice guidelines and the actual care delivered to patients in practice has been well established. The Canadian Diabetes Association (CDA) created an implementation strategy to improve the implementation of its 2008 guidelines. This study will evaluate the impact of the strategy to improve cardiovascular disease (CVD) screening, prevention and treatment for people with diabetes.DesignA pragmatic cluster-randomized trial will be conducted to evaluate the CDAs CVD Toolkit. All family physicians in Ontario, Canada were randomly allocated to receive the Toolkit, which includes several printed educational materials targeting CVD screening, prevention and treatment, either in spring 2009 (intervention arm) or in spring 2010 (control arm). Randomization occurred at the level of the practice. Forty family physicians from each arm will be recruited to participate, and the medical records for 20 of their diabetic patients at high risk for CVD will be retrospectively reviewed. Outcome measures will be assessed for each patient between July 2009 and March 2010. The primary outcome will be that the patient is receiving a statin. Secondary outcomes will include 1) the receipt of an angiotensin converting enzyme inhibitor or angiotensin receptor blocker, 2) various intermediate measures (A1c, blood pressure, LDL-cholesterol, total-/HDL-cholesterol ratio, body mass index and waist circumference), and 3) clinical inertia (the failure to change therapy in response to an abnormal A1c, blood pressure or cholesterol reading). The analysis will be carried out using multilevel hierarchical logistic regression models to account for the clustered nature of the data. The group assignment will be a physician-level variable. In addition, a process evaluation study with six focus groups of family physicians will assess the acceptability of the CDAs Toolkit and will explore factors contributing to any change or lack of change in behaviour, from the perspectives of family physicians.DiscussionPrinted educational materials for physicians have been shown to exert small-to-moderate changes in patient care. The CDAs CVD Toolkit is an example of a practice guideline implementation strategy that can be disseminated to a wide audience relatively inexpensively, and so demonstrating its effectiveness at improving diabetes care could have important consequences for guideline developers, policy makers and clinicians.Trial RegistrationThe trial is registered with http://www.clinicaltrials.gov, ID # NCT01026688