Thyroid cancer patient perceptions of radioactive iodine treatment choice: Follow-up from a decision-aid randomized trial.

BACKGROUND: Patient decision aids (P-DAs) inform medical decision making, but longer term effects are unknown. This article describes extended follow-up from a thyroid cancer treatment P-DA trial. METHODS: In this single-center, parallel-design randomized controlled trial conducted at a Canadian tertiary/quaternary care center, early-stage thyroid cancer patients from a P-DA trial were contacted 15 to 23 months after randomization/radioactive iodine (RAI) decision making to evaluate longer term outcomes. It was previously reported that the use of the computerized P-DA in thyroid cancer patients considering postsurgical RAI treatment significantly improved medical knowledge in comparison with usual care alone. The P-DA and control groups were compared for the following outcomes: feeling informed about the RAI treatment choice, decision satisfaction, decision regret, cancer-related worry, and physician trust. In a subgroup of 20 participants, in-depth interviews were conducted for a qualitative analysis. RESULTS: Ninety-five percent (70 of 74) of the original population enrolled in follow-up at a mean of 17.1 months after randomization. P-DA users perceived themselves to be significantly more 1) informed about the treatment choice (P = .008), 2) aware of options (P = .009), 3) knowledgeable about treatment benefits (P = .020), and 4) knowledgeable about treatment risks/side effects (P = .001) in comparison with controls. There were no significant group differences in decision satisfaction (P = .142), decision regret (P = .199), cancer-related worry (P = .645), mood (P = .211), or physician trust (P = .764). In the qualitative analysis, the P-DA was perceived to have increased patient knowledge and confidence in decision making. CONCLUSIONS: The P-DA improved cancer survivors' actual and long-term perceived medical knowledge with no adverse effects. More research on the long-term outcomes of P-DA use is needed.

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.

BACKGROUND: Following 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. METHODS: In 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. RESULTS: In 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. CONCLUSIONS: This 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.

Patients' experiences following local-regional recurrence of thyroid cancer: a qualitative study.

BACKGROUND AND OBJECTIVE: The psychosocial impact of local-regional thyroid cancer recurrence is not known. The aim of this study was to explore thyroid cancer patients' experiences relating to diagnosis and treatment of local-regional disease recurrence. METHODS: We conducted 15 semi-structured interviews with survivors of differentiated thyroid cancer who underwent neck reoperation for recurrent disease. Participants were recruited from the clinical practices of thyroid surgeons and endocrinologists at University Health Network and Mount Sinai Hospitals in Toronto, Ontario. Participant interviews were audio-recorded, transcribed verbatim, and analyzed using qualitative methods. Saturation of themes was achieved. RESULTS: Local-regional recurrence of thyroid cancer was associated with significant psychological distress. Confidence in healthcare providers as well as psychosocial support from family or social relations, were helpful in coping with disease recurrence. After recovery from treatment, post-traumatic growth was reported. However, questions and worry about the risk for future recurrence lingered at follow-up. CONCLUSIONS: Local-regional recurrence of thyroid cancer has a significant psychosocial impact on patients, and support needs are heightened throughout the experience. Healthcare providers should strive to ensure that medical information and psychosocial needs of such patients are met, throughout the treatment experience, as well as at follow-up.

Seeing voices of health disparity: evaluating arts projects as influence processes.

Arts-informed approaches are increasingly popular as vehicles for research, knowledge translation and for engaging key stakeholders on topics of health and health care. This paper describes an evaluation of a multimedia art installation intended to promote awareness of health disparities as experienced by homeless persons living in Toronto (Canada). The objective of the evaluation was to determine whether the installation had an impact on audience members, and if so, to understand its influence on viewers' perspectives on homelessness and the health concerns of homeless persons. Key themes were identified through the analysis of direct observational data of viewer interactions with the exhibit and qualitative interviews with different audience members after the exhibit. The four key themes were: (1) Promoting recognition of common humanity between viewers and viewed (challenging previously held assumptions and stereotypes, narrowing perceived social distance); (2) functions fulfilled (or potentially fulfilled) by the exhibit: raising awareness, educational applications, and potential pathways by which the exhibit could serve as a call to social action; (3) stories that prompt more stories: the stories within the exhibit (coupled with the interview questions) prompted further sharing of stories amongst the evaluation respondents, highlighting the iterative nature of such approaches. Respondents told of recognizing similarities in the experiences recounted in the exhibit with their own interactions with homeless persons; (4) strengths and weaknesses identified: including aesthetic features, issues of audience 'reach' and the importance of suitable venues for exhibition. Theoretically informed by narrative analysis and visual anthropology, this evaluation demonstrates that arts-informed 'interventions' are highly complex and work in subtle ways on viewers, allowing them to re-imagine the lives of others and identify points of common interest. It also problematizes our assumptions about which outcomes matter and why.

Community re-engagement and interprofessional education: the impact on health care providers and persons living with stroke.

PURPOSE: This study evaluated the impact of an educational intervention that integrates concepts of a community re-engagement framework (CR) and interprofessional collaboration (IPC) on health care providers' (HCP) practice with persons living with stroke (PLS). METHOD: A mixed-methods design was used in which HCPs (n = 67) and PLS (n = 29) participated from 9 organizations across the care continuum. Pre- and postintervention surveys and interviews were conducted with the HCPs. One-on-one interviews with stroke clients were also conducted pre and post intervention. Quantitative responses were analyzed in SPSS (Chicago, Illinois, USA) for descriptive frequencies and differences between pre- and postintervention groups. Qualitative open-ended responses were thematically coded using NVivo7. RESULTS: Significant increases occurred in HCPs' knowledge of CR, confidence levels in working with PLS, enhanced understanding of the complex needs of PLS, and positive self-reported impacts on practice. PLS reported positive perceptions of care pre and post intervention. CONCLUSIONS: The intervention provided HCPs with a common language and framework to work collaboratively and holistically in delivering care consistent with stroke best practices.

'There is no love here anyway.' Sexuality, identity and HIV prevention in an African sub-culture in Amsterdam, The Netherlands.

BACKGROUND: Undocumented African immigrants in The Netherlands are persons perceived to be at high-risk for HIV infection and yet are also a group that health care providers find difficult to access. The present study explores the experiences of a sample of undocumented African immigrants living in Amsterdam and offers recommendations aimed at providing more effective prevention interventions. METHODS: Data collection occurred through interviews and focus groups with men and women aged 20-35 of both African and Dutch descent, using their interactions to explore possible communication challenges. Field notes of interviews were transcribed and analysed to identify emergent themes and patterns. A conceptual framework related to power and identity construction was adopted. RESULTS: The findings of the present study show how identity is shaped and constrained by discourses around sexuality and health, as well as what participants perceived to be conflicting belief systems, as well as the Dutch socioeconomic context. The data were divided into two broad categories: challenges around Dutch prevention interventions and challenges around peer-support. Each category is structured around sub-themes, such as 'concepts used in prevention messages', 'inter-cultural tension', 'identification with the educator' and 'stigma: roots and implications'. CONCLUSIONS: These findings indicate that issues of power and identity construction have great implications for the uptake of HIV prevention strategies by African immigrant groups and reveal important opportunities on which to focus prevention efforts.