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INTRODUCTION: The incidence of kidney cancer (KCa) in Canada is rising. Despite this, there is a shortage of research assessing KCa care experiences. This study aims to explore the current experiences of KCa survivors related to treatment and management, information provision, and barriers to care. METHODS: A cross-sectional, descriptive study of KCa patients was conducted online and through various cancer centers across Canada. English- and French-speaking adults who received a KCa diagnosis and were currently undergoing treatment or had completed treatment in Canada were eligible to participate. RESULTS: In total, 368 surveys were completed. Ten percent of respondents had not yet received treatment, 29% were receiving treatment, and 56% had completed treatment. Most respondents (72%) had localized KCa (stage 0-3) at diagnosis. Sixty-one percent of respondents reported that their doctors discussed various treatment options with them and 24% reported discussing applicable clinical trials. Most (85%) respondents received information about their KCa and 36% discussed where to get information about their disease and support. The most commonly reported barriers to care were side effects (26%), system delays (26%), not having access to certain treatments (25%), and financial burden (24%). More participants in Central Region and Quebec (p=0.004) and rural/suburban (p=0.014) areas reported lacking access to certain treatments and KCa experts. CONCLUSIONS: This was the first large-scale study to explore access to care experiences of Canadian KCa survivors. Results show examples of good patient-centered care and provide new practical information that can inform efforts to improve patient-centered care for KCa patients.
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BACKGROUND: Cancer patients and their caregivers want information about their disease and are interested in finding health information online. Despite the abundance of cancer information online, it is often fragmented, its quality is highly variable, and it can be difficult to navigate without expert-level knowledge of the cancer system. The Patient & Family Library at the Princess Margaret Cancer Centre offers a broad collection of high-quality cancer health information and staff are available to help patrons refine their questions and explore information needs that they may not have considered. OBJECTIVE: The purpose of this research study was to deconstruct patrons' information-seeking behaviors in the library to assess the feasibility of replicating the services provided in the library through a Web app, extending the service beyond the walls of the cancer centre. The specific aims of this research were to understand (1) how patrons approach information seeking in the library (interface design), (2) how patrons communicate their informational needs (information categorization and metadata requirements), and (3) what resources are provided to address the patrons' information needs (collection development). METHODS: We employed a qualitative, instrumental case study to deconstruct patrons' health information-seeking behavior. The study population included patients, the librarian, and library volunteers. Ethnographic observation was conducted at the library over 3 days and key informant interviews with library staff were conducted to address the first aim. A closed card-sorting activity was conducted to address the second aim and the library shift logs and Search Request Forms (SRFs) were reviewed to address the third aim. RESULTS: A total of 55 interactions were recorded during the ethnographic observation and nine semistructured interviews were conducted during the key informant interviews. Seven library patron personas were identified: (1) Newbie, (2) Seasoned, (3) Direct, (4) Window Shopper, (5) Collector, (6) Information Seeker, and (7) Distressed. A total of 83 participants completed the closed card-sorting exercise. The participants' conceptual clusters within the similarity matrix overlapped with the groupings created by the librarian, with a few differences. A total of 161 entries in the library shift log and 65 SRFs were analyzed to determine what resources were given to patrons. Most resources that patrons received were available online (61%), although almost half of these required special access (47%). CONCLUSIONS: The study findings suggest it is possible to replicate library functions in a Web app with a few exceptions that cannot be replicated online. These elements include access to journal articles or other content behind paywalls and the librarian's ability to encourage further discussion through empathy and active listening. Discussion with the librarian could serve to refine and predict needs through observing information seekers and to provide immediate connection to spiritual care and psychosocial support for patrons in distress.
