The purpose of this dissertation is to effectively understand, measure, and model the impact of Access to Care (AC) on Patient Safety (PS) through the creation of a model that evaluates their interdependence. Through the use of statistical tools and through the combination of variables that define patient access to health care and patient safety, a Patient Access and Safety (PACSA) index is developed. The calculated Patient Access and Safety index provides information to both providers and patients about the impact of access and safety on treatment outcomes. The input variables used to support this research are Patient Access Factors (PAF) (Age, Insurance Type, Visit Type, List Price, and Days To an Appointment) and Patient Safety Factors (PSF) (Severity of Diagnosis, Race, and Gender). In this model, 7,535 observations were used from a single organization based in South Florida, in order to develop the index. The PACSA index offers a tool that helps providers, healthcare staff and patients evaluate patient safety as it is impacted by access to healthcare through the calculated index. This index produces an equation that examines the relationship between access to care and patient safety using the following relationship: PACSA=∑_(i=0)〖(.645〖PSF〗_i- .645〖PAF〗_i )+0.399〗An extensive literature review identifies the connection between AC and PS and the relationships governing these two concepts. Although large organizations like the World Health Organization (WHO), Agency for Healthcare Research and Quality (AHRQ), and Institute of Healthcare Improvement (IHI) have studied these concepts independently, there has not been a study that used a factor or index to describe the relationship. As the healthcare delivery system becomes more complex, and consumers demand better treatment outcomes, there is a growing need to analyze these concepts jointly. This study focuses on diabetic retinopathy (DR). This is a condition experienced by chronic Diabetic patients, and it is one of the major causes of blindness (National Eye Institute, 2009). The increase in the occurrence of Diabetes worldwide has heightened the disease and inspired clinical research. In 2002, it was estimated that the disease stemming from Diabetes, namely DR, accounted for about 5% of world blindness, representing almost 5 million blind people. If left untreated or undetected, about 2% of people become blind, and about 10% develop severe visual impairment. By the year 2030, a possible 36 million people will have acute visual impairments and 7.2 million people will possibly be blind worldwide. In the United States, there are 18 million people with Diabetes, and 30% have Diabetic Retinopathy (5.3 million Americans over the age of 18) (ATA Report 2004; AHRQ, 2004; WHO, 2004). Although this study focused on DR, the model has been designed with the ability to be applied to other diseases and conditions. The goal of creating the PACSA index is to help healthcare workers understand when to schedule patients within the context of access and safety. Current appointment schedules, which are the tools used by healthcare workers, use a “New patient vs. Follow up patient” design. The PACSA challenges the current scheduling schema. No longer will patients be categorized into “New vs. Follow Up” visits. Instead, they will be evaluated for access to care requirements and patient safety needs from the initial point of entry into the health system. The recommendation is to start designing schedules based on PACSA (low PACSA, medium PACSA, and high PACSA). In this new paradigm, the low PACSA would describe patients that have low disease complexity, low number of risk factors, and can wait a little longer for their appointment without having complications of disease from lack of treatment. On the contrary, the high PACSA would include a subset of patients that have high disease complexity, high number of risk factors, and require immediate appointment and medical continuity of care to have the best treatments and outcomes. The PACSA index can serve as a visual guide for decisions regarding access and patient safety requirements. Two key components of quality within healthcare include access to care and patient safety. To create “congruent system integration” (Maier-Speredelozzi, 2007), there must exist synchronization of all healthcare delivery operations. The Patient Access and Safety Index (PACSA) provides a framework for integrating these two components. This research and the indices developed can offer benefits to health care organizations, patients, physicians, and government entities by providing a versatile tool to help improve access to health care and patient safety.

Background: People are living longer with chronic life-limiting illnesses such as cancer. Much is expected of lay cancer carers with the shift of complex non-acute care to the community and the pressures this can place on family relationships. The lay caregiving role does not appeal to all, yet willingness to care is often expected by others including health professionals. Carers who feel reluctant but committed to the role may experience adverse consequences. Reluctance to care is under-investigated, particularly in the cancer context, and its indicators may include a poor carer-patient relationship, perceived lack of choice and lifestyle disruption. Existing theories of caregiving do not adequately explain reluctance to care, and the concept remains under-developed. The assumptions underpinning this study are that: some cancer carers are reluctant to care, some carers may be reluctant toward specific aspects of the caregiving role or at different times during the cancer trajectory, and some reluctant carers will not want to reveal or discuss their unwillingness. Aim: The aim of the study was to gain a clearer understanding of lay carers’ reluctance to care for patients with recurrent cancer. Methods: A mixed methods design was used. In Phase I, data provided by a consecutive sample of carers (N = 98) of cancer patients corresponding to the patients’ final year were analysed to explore the context in which reluctance to care might exist or develop, and focusing on differences by spousal relationship and by gender in anxiety and depression, awareness of the stage of cancer, perceived social support, and perceived burden. In Phase II, a purposive sample of carers of patients with recurrent cancer (N = 16) were interviewed in-depth, using open-ended questions to generate qualitative data regarding their perceptions and experiences of caregiving and reluctance to care. Complementary data were obtained from a purposive sample of health professionals who interact with cancer carers (N = 13). The interview transcripts were analysed qualitatively to identify patterns and themes which would provide insights into the dimensions of reluctance to care. Results: In Phase I, spouses perceived greater family support but caregiving had a greater negative impact on their daily activities and social interaction. Non-spouses were more anxious than spouses, but reported greater social support, and less negative impact on their finances, daily schedule and health. Female carers were more anxious and depressed than males, who reported less burden and greater social support. Awareness of the stage of cancer was positively but weakly correlated with anxiety and depression. In Phase II, reluctance to care was experienced by both spouses and non-spouses and was not gender specific. Carers and health professionals held diverging perceptions and expectations of the lay caregiving role. Caregiving was an obligatory but invisible role and for some carers it led to exhaustion due to a lack of role boundaries. Carers were faced with forced choices. The lay caregiving role seemed to come as a non-negotiable package of expectations which gave carers the autonomy to accept their role rather than the choice to refuse it. Contextual factors which seem conducive to reluctance were overshadowed by carers’ commitment to the role, which suggests that their preferences were a lower priority despite the personal cost. There was indirect evidence of reluctance in others: family members distanced themselves from the caregiving situation, and health professionals were distanced from carers by their patient-centredness. Conclusions: This study has identified three fundamental dimensions of reluctance to care: the invisibility of the caregiving role, its lack of boundaries and its forced choices. Caregiving is often a sacrificial rather than reciprocal role, but reluctance is seen as an abnormal rather than realistic response to abnormal role expectations. The findings were limited by the extent to which carers disclosed reluctance and the extent to which reluctant carers remained in the role. As a result, reluctance to care may have been underestimated. Measuring this latent and taboo topic is likely to remain a challenge as the concept of reluctance to care continues to evolve. This study has established the importance of ongoing work on a topic which cannot remain hidden as the need for lay cancer care continues to expand.

Made available in DSpace on 2014-12-17T14:46:39Z (GMT). No. of bitstreams: 1 KatiaRBR.pdf: 328748 bytes, checksum: 9ccb7264eeae450fddca94907e4b0707 (MD5) Previous issue date: 2009-02-19 / In tertiary care, the Intensive Care Unit (ICU) is nowadays one of the most complex settings in providing care to critically ill patients and could make the difference in favor of life. Nevertheless, the stigma of death which pervades the imagination when the ICU is mentioned and the excessive importance placed on machines rather than on the human being end up by causing distress to some extent. As the purpose of this investigation is to understand the distress caused to a patient in an ICU, it has been grounded on the following question: What kind of distress does a patient go through during his/her experience in an ICU? This study has, therefore, an analytical and reflexive character embedded in a qualitative dimension of a phenomenological approach based on narratives. To this purpose, five patients were interviewed from November to December 2008. Out of the empirical material gathered from these narratives we were able to identify several factors that cause distress to ICU patients. Among them were: the certainty that they are critically ill and fear death, a closed room, too much lighting, a typical loneliness arising from being isolated from family members and dear ones, lack of communication with the professional staff, and noise; besides having to undergo therapeutic procedures. In summary, although the ICU is seen as a place of distress, in many aspects and in accord with this research, such distress can and should be relieved. On the other hand, being near to death leads them to a redefinition of life, said the patients. / Na aten??o terci?ria, ? a Unidade de Terapia Intensiva (UTI), na atualidade, um dos cen?rios de maior complexidade no atendimento ao paciente grave, podendo fazer a diferen?a em favor da vida. No entanto, o estigma da morte que permeia o imagin?rio da popula??o - quando se fala em UTI -, a supervaloriza??o da m?quina, em detrimento do ser humano, terminam impondo algum sofrimento. Tendo como objetivo compreender o que sofre o paciente em uma UTI, esta investiga??o pautouse no seguinte questionamento: O que sofre o paciente durante sua experi?ncia na UTI? Trata-se, portanto, de um estudo de car?ter anal?tico e reflexivo, inserido numa dimens?o qualitativa de abordagem fenomenol?gica, com base em narrativas. Com este prop?sito, foram entrevistados cinco pacientes entre os meses de novembro e dezembro de 2008. Do material emp?rico, resultante das referidas narrativas, pudemos identificar v?rios fatores que geram sofrimento em paciente na UTI, dentre os quais destacamos: a certeza da gravidade e o medo da morte, o ambiente fechado, a ilumina??o em excesso, a solid?o caracterizada pelo distanciamento dos familiares e entes queridos, a falta de comunica??o com os pr?prios profissionais, o barulho, al?m da submiss?o aos procedimentos terap?uticos. Em s?ntese, mesmo reconhecendo a UTI como um espa?o que leva ao sofrimento, em muitos aspectos, conforme a pesquisa, esse sofrimento pode e deve ser atenuado. Por outro lado, a proximidade da morte conduz a uma redefini??o da vida, conforme expressaram os pacientes

144f. / Submitted by Suelen Reis (suziy.ellen@gmail.com) on 2013-04-03T18:08:25Z No. of bitstreams: 1 Leila%20Maria%20Brito.pdf: 1243628 bytes, checksum: 99b4ab46a66a29713e10f16e5a3ef6a3 (MD5) / Approved for entry into archive by Rodrigo Meirelles(rodrigomei@ufba.br) on 2013-04-09T16:07:33Z (GMT) No. of bitstreams: 1 Leila%20Maria%20Brito.pdf: 1243628 bytes, checksum: 99b4ab46a66a29713e10f16e5a3ef6a3 (MD5) / Made available in DSpace on 2013-04-09T16:07:33Z (GMT). No. of bitstreams: 1 Leila%20Maria%20Brito.pdf: 1243628 bytes, checksum: 99b4ab46a66a29713e10f16e5a3ef6a3 (MD5) Previous issue date: 2010 / Este estudo teve como objeto de investigação, as práticas de cuidado da enfermeira em unidades de terapia intensiva, e teve como objetivos: descrever e analisar as práticas de cuidado da enfermeira às pessoas hospitalizadas em unidades de terapia intensiva. Foi um estudo de natureza qualitativa, do tipo analítico e descritivo, cujos sujeitos foram enfermeiras que atuam na assistência direta, numa unidade de terapia intensiva adulto de um hospital de grande porte, da cidade de Salvador-BA. Utilizou-se a técnica da entrevista semi-estruturada, gravada, e a observação não participativa da atuação das enfermeiras, em suas práticas na UTI; através de um roteiro de observação e um diário de campo. O método de análise de dados foi a Análise de Conteúdo temática de Laurence Bardin. Totalizaram 10 (dez) participantes desta investigação. Do material que foi analisado surgiu 3 (três) categorias: 1) concepção do cuidar assistencial; 2) Concepção do cuidar relacional; 3) Entendimento de práticas de cuidado como ações de enfermagem. Foi possível concluir que a compreensão sobre o que é cuidar e o que são práticas de cuidado para o grupo estudado não é uniforme e que a vigência de uma concepção de cuidar mais assistencial e, de práticas de cuidado menos humanizadora é um fenômeno multicausal. As enfermeiras do grupo estudado referem importar-se com as questões relativas à proximidade pessoa-pessoa, da alteridade e da compaixão, mas em suas práticas de cuidado predominam ações técnicas e rotineiras. A maneira como as enfermeiras cuidam das pessoas internadas numa UTI é mais técnica caracterizada pelo distanciamento e relacionamento interpessoal superficial. É preciso considerar aspectos como o modelo biomédico de assistência à saúde vigente mais focado na produtividade, o ambiente de uma terapia intensiva com a iminência de eventos súbitos com risco de morte, a multiplicidade de vínculos empregatícios que gera cansaço físico, mental e pouca disposição à interação com o outro, dentre outros fatores que interferem na maneira como as enfermeiras concebem o cuidar e executam suas práticas de cuidado. / Salvador

Harmful BRCA (breast cancer susceptibility genes 1 and 2) mutations greatly increase women's risks of breast and/or ovarian cancer but are found in less than 1 per cent of the general population. Thus, care is targeted at women with strong family histories of breast and/or ovarian cancer. Genetic testing can determine if these high-risk women carry harmful mutations; if so, they may pursue care that facilitates cancer prevention, detection, and/or treatment. In this thesis, I examine in which cases it is problematic that some British and American women do not access this potentially life-saving care. In recognition of the difficulty in measuring access, a view informed by preliminary interviews and a literature review, I use three complementary approaches to illustrate different aspects of access. First, a critical review surveys how British and American clinical guidelines, laws, policies, and legal rulings govern service availability. Second, a scoping study describes the US and UK literature on barriers and facilitators to access. Third, an empirical study involving focus groups with UK and US genetics professionals and support group members details how women provide and pursue care. Using Beauchamp and Childress's 'four principles' framework, I analyse how these approaches inform four elements of access: availability of services, barriers to care, relevance and effectiveness of services, and equity of access. I distinguish between cases in which women do not want and/or need care and cases in which women are denied care they want and need, and I propose strategies to redress current inequities in access. I further suggest that offering Ashkenazi Jewish population screening alongside family history-based screening may be appropriate. I conclude that whilst most problematic cases are country-neutral, only US women are problematically constrained by insurance and legal loopholes, and only UK women are problematically constrained by regional variations in health authority funding.

L’objet de cette recherche porte sur le don de soi dans les soins et plus particulièrement sur la vocation comme source d’engagement dans la profession infirmière. Nous cherchons à connaitre ce qui anime les individus à exercer cette profession exposée à ce que la société refoule de nos jours : La vulnérabilité, la vieillesse, la maladie et la mort. Le point d’entrée de notre recherche a démarré autour d’une terminologie : la vocation, pour aboutir au postulat que l’engagement dans les soins infirmiers nécessite une forme « d’amour » particulière qui pousse l’individu à porter secours, attention et soin à la personne vulnérable. Nous savons qu’appréhender cet engagement, c’est accepter de se frotter à la complexité. Nous sommes face à un enchevêtrement de volontés, de demandes, de choix, de désirs, de rêves, de représentations idéalisées, de recherche d’explications, de sens. Cet ensemble constitue le socle sur lequel les acteurs s’engagent. Dans ce travail, nous nous sommes intéressés à l’engagement « initial ». Dans une démarche compréhensive, nous avons questionné des étudiantes infirmières et des infirmières à propos de ce moment où elles ont décidées de franchir le pas et fait le choix de s’engager dans la profession. L’enquête nous a permis de recueillir, un certain nombre de données et de verbatim, ceux-ci croisés avec nos données personnelles, ont permis d’explorer ce processus. Nous avons confronté les données recueillis à la théorie du don de Marcel Mauss. Un faisceau d’orientations entre liberté et contrainte, gratuité et intérêt, nous ont servi d’axe sur lequel s’est mobilisée toute notre démonstration. Nous sommes allés chercher les modes de signification et d’incarnation de l’engagement infirmier au prisme de la cartographie conceptuelle de la tétralogie du don.Mots clés : soins, engagement, infirmière, vocation, image médiatique, don, reconnaissance. / Our study focuses self-sacrifice on nursing care and more specifically about the calling in nurse profession. As the work wore on, we search to know how people decided to become a nurseWe seek to know what motivates individuals to practice this profession exposed to what society is driving back today: vulnerability, old age, illness and death. The point of entry of our research has started around a terminology: the calling or vocation, to arrive at the postulate that the commitment in nursing requires a particular form of "love" which urges us to bring relief, attention and care to the vulnerable person. We know that to grasp this commitment is to accept the complexity. For nurses, we are confronted with an entanglement of wills, demands, choices, desires, dreams, idealistic representations, search for explanations, meaning that constitutes the basis on which actors engage. In this work, we looked at the initial commitment. In a comprehensive approach, we questioned nursing students and nurses about the time when they decided to take the plunge and chose to engage in the profession. The survey allowed us to collect a number of data and verbatim, which crossed with our personal data, allowed to explore this process. We compared the data collected with Marcel Mauss's theory of the gift. A cluster of orientations between freedom and constraint, gratuitousness and interest, have served us as the axis on which our whole demonstration has been mobilized. We went to seek the modes of meaning and incarnation of the nursing commitment to the prism of the conceptual mapping of the tetralogy of the gift.Keywords: to care, to cure, involvement, nurse, vocation, media visuals, gift, thankfulness.

Telehealth has great potential for providing timely and comprehensive care to community-dwelling older adults while reducing their barriers to healthcare access. The purpose of this study is to understand how older adults with chronic diseases access healthcare services in their community and evaluate the impact of telehealth on access to care from a self-reported survey conducted in British Columbia. About a quarter of older adult participants reported barriers to healthcare access in their community. Participants frequently reported financial barriers to healthcare access regardless of telehealth use. In addition, telehealth users more frequently reported a lack of necessary healthcare services in their community and physical barriers to access to care. Although the findings did not demonstrate a significant difference in access to care between telehealth users and nonusers, telehealth was identified as a meaningful care delivery tool for older adults with barriers to healthcare access. Further efforts are needed to implement a valid tool for ongoing evaluation and optimization of telehealth and integrate telehealth into clinical and community programs to reduce physical and financial barriers to healthcare access for community-dwelling older adults with chronic illnesses. / Graduate

Unga som varken arbetar eller studerar (UVAS) är en grupp som fått alltmer uppmärksamhet i Sverige och Europa. Att unga vuxna är utan sysselsättning kan få konsekvenser både för samhället med höga kostnader men även för den unga själv i form av psykiskt och socialt lidande. Tidigare forskning visar på att unga som varken arbetar eller studerar är en heterogen grupp med individuella behov, samt att psykisk ohälsa är vanligt förekommande inom målgruppen. Denna studie syftar till att undersöka vad unga vuxna med erfarenhet av att vara UVAS samt professionella som arbetar med UVAS anser är orsak till att bli UVAS, hinder till hjälp för att ta sig ur sin situation och psykiska ohälsa samt förslag på hur fler UVAS kan få hjälp. Studien har utförts genom en kvalitativ metod med semistrukturerade intervjuer. De intervjuade är sju professionella som på något sätt arbetar med UVAS samt tre unga med erfarenhet att vara UVAS. Studien utgår från ett systemteoretiskt perspektiv och Bronfenbrenners ekologiska modell. Resultatet har analyserats genom tematisk analys. Resultaten visar att UVAS-gruppen är heterogen och att orsaker till att bli en UVAS varierar och att flera orsaker kan påverka- och förstärka varandra. Orsaker som framkommer är bland annat svårigheter i skolan, oroliga hemförhållanden samt psykisk ohälsa. Hinder för UVAS att få hjälp finns enligt studiens empiri på både strukturell- och individuell nivå. Exempel på hinder som framkommer är långa väntetider inom psykiatrin, att det inom skolan saknas resurser för individanpassat stöd, stigmatisering av psykisk ohälsa samt en social ångest som gör det svårt för UVAS att ta sig utanför hemmet. Förslag som finns för att fler UVAS ska få hjälp att ta sig ur sin situation och psykiska ohälsa är bland annat förbättrad samverkan mellan myndigheter och verksamheter, individuellt anpassat stöd, alternativa undervisningssätt i skolan samt fler lättillgängliga hälsovårdstjänster. / Young people not in education, employment or training (NEET, which is comparable with UVAS in swedish) is a group which has received more and more attention in Sweden and Europe. Young people who neither work or study is a problem both on society level with high costs for the society as well as on an individual level in form of poor mental health and social suffering. Previous research shows that NEET is a heterogeneous group with individual needs, and that poor mental health is common in the group. This study aims to investigate what young adults with experience of being NEETs as well as professionals who work with NEETs consider to be the reason of becoming NEET, barriers to get help to get out of their situation and poor mental health and suggestions on how more NEETs can get access to help. The study has been conducted through a qualitative method with semi-structured interviews. The respondents are seven professionals who work with NEETs and three young people with experience of being NEET. The study is based on a system theoretical perspective and Bronfenbrenner's ecological model. The results have been analyzed through thematic analysis. The result shows that NEET is a heterogeneous group and that causes of becoming NEET vary and can affect each other. Causes that emerge include difficulties in school, troubled home conditions and poor mental health. Example of barriers that emerge are long queues to get help from the psychiatry, lack of resources in schools for individualized support, stigmatization of poor mental health and social anxiety. Suggestions to help more NEET to get out of their situation and poor mental health includes improved collaboration between authorities and welfare services, individually adapted support, alternative teaching methods in the school and more accessible health care services.

PURPOSE: Sickle cell disease (SCD) is an inherited blood disorder that affects the hemoglobin protein of red blood cells and has a significant impact on morbidity, mortality, and quality of life. Hydroxyurea has been FDA approved since 1998 as a disease-modifying therapy for SCD. However, hydroxyurea has not been optimally utilized for those with SCD. The purpose of this study was to evaluate reasons for hydroxyurea use, from the perspectives of providers, adults with SCD, and parents/caregivers of children with SCD, as well as perceived barriers to its use. We examined indications and reasons for being “on hydroxyurea,” defined by patients as currently taking hydroxyurea, and reported on pain frequency, perceptions of barriers, hydroxyurea adherence, and health care access for patients with SCD who were either on and not on hydroxyurea. METHODS: We conducted a cross sectional analysis of data collected within the Pacific Sickle Cell Regional Collaborative (PSCRC), a consortium of nine western U.S. states. Individuals were eligible for this study if they 1) had a confirmed diagnosis of SCD, 2) were followed at one of the PSCRC sites, and 3) were eligible for hydroxyurea therapy. Parents/caregivers of children with SCD less than 18 years and adults with SCD 18 years and older completed a brief survey about hydroxyurea use, indications, side effects, pain frequency, number of hospital and emergency department (ED) admissions per year, and individual and family perceptions of barriers to hydroxyurea use. Participants completed a follow-up survey annually, but we reported only on baseline data. Data collection occurred between February 2016 and May 2018. RESULTS: Individuals with SCD (n = 413) included 1) children (n=178; 6.7 ± 3.4 years), 2) adolescents (n=66; 15.0 ± 1.4 years), 3) young adults (n=57; 21.4 ± 2.6 years), and 4) adults (n=112; 39.2 ± 10.6 years). The majority were predominantly female (51.6%), African American (93.2%), and had HgbSS (74.1%) genotype. The majority of children (65.2%), adolescents (62.1%), and young adults (54.4%) were on hydroxyurea; fewer adults (39.3%) were on hydroxyurea. The majority with HgbSS (65.5%) were adherent to hydroxyurea. There was no significant difference in hospitalizations for pain, ED visits, and pain severity in the previous 12 months between individuals who were and were not on hydroxyurea, and between individuals who were and were not adherent to hydroxyurea. For those with a current prescription for hydroxyurea, the majority (66.5%) were receiving hydroxyurea for recurrent pain episodes or acute chest syndrome (19.9%). Hydroxyurea was discontinued because of patient/family preference (34.5%), chronic transfusions (31.1%), and side effects (24.1%). Patients prescribed hydroxyurea for empiric use (n=21) had fewer hospitalizations for pain, ED visits, and severe pain interfering with daily activities. The major barriers to hydroxyurea use, from the perspective of individuals with SCD or their caregivers, were 1) forgetting to take the medicine (19.4%), 2) worried about side effects (16.4%), and 3) lack of knowledge about hydroxyurea (13.6%). Fewer young adults (49.1%) and adults (50.0%) had primary care providers than children (78.1%) and adolescents (65.2%). CONCLUSIONS: Barriers to hydroxyurea use persist with emerging solutions to alleviate these barriers. For this sample, while hydroxyurea prescription rates by sickle cell specialists were similar to what has been seen in some other studies, neither hydroxyurea use nor adherence were associated with decreased frequency of hospitalizations for pain, ED visits, and severe acute pain episodes in the previous 12 months. Future studies need to evaluate hydroxyurea prescription patterns, duration on hydroxyurea, and adherence to hydroxyurea. Healthcare providers are recommended to prescribe hydroxyurea for eligible individuals who may benefit from it, such as those HgbSS or HgbS-β0 thalassemia genotype, and prescribe for empiric use to minimize complications. Provider and patient education about hydroxyurea could reduce common barriers experienced by individuals with SCD. It is important to customize educational resources to specific concerns for different age groups. Individuals 18 years and older with SCD have been documented with more ED visits and hospitalizations due to pain, most likely because they did not have a primary care provider and an adult hematologist with expertise in SCD. Future studies need to evaluate whether primary care providers who receive SCD education may promote hydroxyurea use and adherence. Dedicating time and resources for shared decision making between providers and patients/families can address concerns about hydroxyurea and increase patient/family confidence when deciding about hydroxyurea. As more disease-modifying therapies become available for individuals with SCD, strategies for shared decision making facilitate standardization and optimize the use of hydroxyurea and emerging therapies.

Objective: Access to care is key to effective rectal cancer treatment. We hypothesized that ethnic/racial minorities living in high population density areas would have the greatest delays in cancer care compared to whites living in medium population density areas. Methods: Using 2004-2016 National Cancer DataBase data, we identified stage I-III patients with invasive rectal adenocarcinoma who underwent surgery. The data were analyzed by race/ethnicity (whites, blacks, or Hispanics) and population density (metropolitan or urban/rural). Multivariable ANCOVA was performed to evaluate the duration of time from diagnosis to surgery. Results: The study population consisted of 76,131 patients: 65,172 Non-Hispanic whites (NHW; 85.6%), 6,167 Non-Hispanic blacks (NHB; 8.1%), and 4,792 Hispanics (6.3%). Of these, 61,363 patients (80.6%) lived in metropolitan areas. Among direct-to-surgery patients, the greatest difference in mean time from diagnosis to surgery was 20.3 days (urban/rural NHW, 53.3 days, vs. metropolitan Hispanics, 73.6 days). Among patients receiving neoadjuvant therapy, the greatest difference in mean time from diagnosis to surgery was 18.8 days (urban/rural NHW, 136.9 days, vs. metropolitan NHB, 155.7 days). After multivariable adjustment for several socioeconomic and clinical factors, among direct-to-surgery patients, metropolitan Hispanics had a 16.5-day delay (95% CI 12.9-20.0) compared with urban/rural NHW. In patients receiving neoadjuvant therapy, metropolitan NHB had an 18.1-day delay (95% CI 16.1-20.0) compared to urban/rural NHW. Conclusion: The combination of high population density and racial/ethnic minority status was associated with delays in rectal cancer care that persisted after adjusting for other important factors. Understanding which populations are at risk and perceived obstacles to timely care will help inform interventions to minimize treatment access disparities.