Abstract INFORMATION NEEDS AND INFORMATION SOURCES OF PATIENTS DIAGNOSED WITH RARE CANCERS By Dana L. Ladd, Ph.D., MS, SLIS BACKGROUND: Approximately 25% of all cancers diagnosed are considered rare. Patients may face many significant challenges including difficulty obtaining information about their rare conditions. Patients often have high information needs and may seek desired information from a variety of informational sources including healthcare providers, media, print, government and non-profit organizations in order to meet their needs. Accessing reliable consumer-level information can be challenging and often information needs are unmet. Dissatisfaction with health information provision can result in negative health-related outcomes and factors including decreased health-related quality of life. METHOD: This cross-sectional design study used validated measures to assess the information needs, information sources, information satisfaction, and health-related quality of life of patients diagnosed with rare cancers (n=113). Adult patients at the VCU Health Massey Cancer Center who had been diagnosed with a rare cancer in the past 12 months were contacted via mail survey. Descriptive statistics were used to summarize patients’ information need and information received levels. Unmet needs were analyzed using a two-sample T-test. Chi-square tests were used to analyze information needs and received by demographics for gender and race and logistic regression analysis was used for age. Descriptive statistics summarized information sources used and preferred. Finally, descriptive statistics were used to summarize information satisfaction. The relationship between information satisfaction and health-related quality of life was assessed using a two-sample T-test. RESULTS: Study participants had high information needs, particularly for information about disease, medical tests, and treatment. Though patients also reported receiving information at high levels, 21 participants (18.9%) reported being unsatisfied with information provision. Unmet needs were found for information about disease and on the item level for information about causes of cancer, whether their cancer was under control, expected benefits of treatment, and financial, insurance, and work-related information. Although participants reported preferring information from their healthcare providers, they most commonly sought information from the Internet more than any other source. CONCLUSION: By identifying patients’ information needs and sources, this study fills an important gap in the information needs and sources literature of patients diagnosed with rare cancers. Identification of these needs allows healthcare providers to tailor information provision to more effectively meet patients’ information needs.

Les cancers primitifs du péritoine ont une incidence qui varie de 1 à 2 cas/an/1 000 000 d'habitants selon les types. Leur diagnostic et leur prise en charge sont complexes et exigent des spécificités de moyens et de compétences. Dans le cadre du plan cancer, le réseau national de prise en charge des tumeurs rares du péritoine (RENAPE) s'est structuré autour de centres experts et de missions transversales pour garantir à chaque patient, l'accès à l'expertise médicale et diagnostique. Après une revue de la littérature sur l'épidémiologie de ces cancers et leurs caractéristiques de prise en charge, l'objectif de ce travail est d'évaluer l'impact de l'organisation du réseau RENAPE, et de ses actions mises en œuvre, pour améliorer le parcours de soins des patients et favoriser l'évolution des pratiques dans la prise en charge de ces cancers. Une première étude, menée sur une cohorte de mésothéliomes péritonéaux, démontre l'apport de l'organisation RENAPE sur la diminution des délais de prise en charge thérapeutique. Une seconde étude rapporte les actions mises en œuvre par le réseau pour standardiser et homogénéiser les procédures chirurgicales et approches thérapeutiques. Une troisième étude présente les caractéristiques épidémiologiques de la population issue de l'observatoire mis en place au sein du réseau. Enfin, une quatrième étude analyse la distribution spatiale des patients pris en charge au sein du réseau et évalue l'impact de facteurs socio-économiques sur l'incidence des mésothéliomes péritonéaux. En s'appuyant sur une dynamique de réseau, l'organisation RENAPE a permis de structurer une filière de référence qui intègre une approche multidisciplinaire / Rare peritoneal malignancies (RPM) are extremely rare with annual incidence of 1 to 2 case/1,000,000 of the population per year depending types. Diagnostic and therapeutic management are complex and need specialized clinical skills associated to specific technical platforms. As part of the French cancer plan the national network for the treatment of rare peritoneal malignancies (RENAPE) has been organized including expert centres and cross-disciplinary healthcare issues to allow the patients to access to clinical expertise. After literature review of epidemiological data, the aim of this work is to evaluate the impact of the RENAPE healthcare organization on the clinical pathways of patients and to support the development of clinical practices in the management of RPM. A first study demonstrated the benefit of the RENAPE network to reduce the therapeutic management delays in cohort of peritoneal mesothelioma (PM). Then a second work reports the RENAPE initiative to standardize and homogenize the surgical procedures and therapeutic approach. A next study describes the epidemiological characteristic of the population from the RENAPE registry. Finally a fourth study analyzes the geographical distribution of RENAPE cohort and to evaluate the impact of the socioeconomic factors on the PM incidence. Based on the network approach, the RENAPE organization succeeded to structure a healthcare system with multidisciplinary integrated approach