Previously, the medical community held the view that the only 'real' patient-related outcomes are those that have direct impact on morbidity and mortality. This view has changed significantly over the last decade, and currently, issues such as patient satisfaction and quality of life are often considered as important as clinical morbidity. 1 This shift is echoed in recent studies in the anesthesia literature that suggest that patient satisfaction should serve as an important endpoint and indicator of overall quality of anesthesia care. 2,3 Previous research on patient experience in medical and surgical settings has primarily focused on adult patients, whereas little data exist on satisfaction among children and their parents. 4 Previously, our center reported that the themes of modifiable and non-modifiable factors for adult surgical patients include satisfaction from clinician communication skills, information provision to patients, organization aspects of the unit, and demographic and health status predictors. 3 This follow-up special interest article focuses on modifiable and non-modifiable factors in children undergoing surgical procedures and their parents. A summary of articles included in this review is shown in Tables 1-3. | ME A SURING PEDIATRIC PERI OPER ATIVE PATIENT SATIS FAC TI ONIt is important to appreciate that developmental factors such as age and verbal and cognitive ability impact assessment of patient satisfaction in pediatric populations. Research suggests that children as young as four years old can express their opinion on their hospital
Over the past several decades, the proportion of children in non-White racial and ethnic groups in the United States has increased significantly. For example, the Latinx population is currently the country's second largest racial/ethnic group and is expected to increase from 62 million persons to an estimated 111 million by 2060.The terms "Hispanic" and "Latinx" are often used interchangeably, but Hispanic refers to those who speak Spanish or are descended from a Spanish-speaking lineage, whereas Latinx refers to those of Latin American origin or descent (used as a gender-neutral alternative to Latino or Latina). Latinx children also comprise 25.6% of US children under the age of 16, or an estimated 19 million children.Additionally, Black children comprise 14% of US children, and the proportion of multiracial children in the US has tripled in the past decade from 5% to 15%.Racial disparities in healthcare outcomes and delivery have been extensively documented across multiple areas of medicine, including surgical domains. Racial and ethnic minorities have been shown to not only have worse clinical outcomes after surgery, but to also have lower rates of surgical procedures compared with non-minorities even after adjusting for insurance status. 1 Despite the fact that national initiatives aimed at reducing racial disparities in health care were first implemented in 2011, these surgical disparities continue to exist today. 1 Indeed, a recent NIH-ACS Symposium on Surgical Disparities Research has identified an urgent need for research aimed at understanding and addressing these disparities. Surgical disparities in adult patients have been long-established, and there is also significant evidence to indicate that minority children experience markedly higher rates of postoperative mortality and complications. 2 In the past, these disparities were commonly attributed to a higher comorbidity burden in minority populations 3 ; however, it was found that even among apparently healthy children, outcomes still varied significantly with race. Across 186 medical centers in the US, Black children experienced a 3.5 times increased risk of dying within 30 days of surgery compared with White children. 2 Furthermore, despite neither group having significant preoperative comorbidities, Black children had a 27% higher risk of postoperative complications and serious adverse events, including sepsis, bleeding that required transfusion, unplanned reoperation, and unplanned tracheal reintubation. 2
Disparities in quality of life in Latino youth in cancer treatment and their families have been well documented. Parents of children undergoing cancer treatment experience increased stress that impacts physical and emotional health and subsequently, quality of care received by children. Access to supportive interventions may also be limited for Latino caregivers, due to myriad factors such as lack of insurance, income, language barriers, and documentation status. Accordingly, we aimed to address this gap in the literature by engaging in an equitable collaboration with community partners to develop an intervention to improve quality of life in Latino caregivers of children with cancer. Specifically, we utilized a community-based participatory research (CBPR) model to create a community advisory board with which to partner in this endeavor. Spanish-speaking parents of youth who were in or had previously undergone cancer treatment were recruited. We held regular meetings over the course of one year to identify themes of recurring experiences and barriers to optimal quality of life during children’s cancer treatment. Meetings were continuously evaluated to ensure adherence to the following CBPR principles: 1. collaborative & equitable, 2. mutually beneficial, 3. co-learning process and were transcribed and coded for thematic elements. Significant themes unique to this population included: increased parental stress given cancer care generally fell to one parent, minimal access to self-care strategies, lack of culturally competent healthcare, lack of access to appropriate health-related information, and language barriers affecting quality of communication and information transfer. These themes were used to identify components of a caregiver intervention that includes modules addressing interactions with healthcare providers, self-care with a focus on stress management, and health literacy. Next steps in this program of research are to vet the intervention components with a larger community advisory board to ensure cultural relevance and appropriateness and develop and implement the intervention. This program of research has the potential to minimize disparities in psychosocial outcomes in underserved Latino families of children with cancer. Citation Format: Michelle A Fortier, Ramon Garcia, Lessley Torres, Sonia Zavala, Beverly Mendoza, Elisa Ornelas, Haydee Cortes, Zeev N Kain, Belinda Campos. A community-based participatory research approach to address healthcare disparities in quality of life of Latino parents of children with cancer [abstract]. In: Proceedings of the Twelfth AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2019 Sep 20-23; San Francisco, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2020;29(6 Suppl_2):Abstract nr B038.
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