“It’s Like Going through an Earthquake”: Anthropological Perspectives on Depression among Latino Immigrants

Depression is one of the most prevalent mental illnesses in the community and is responsible for a significant amount of disability. According to epidemiological and primary care studies, Latinos suffer from depression at high rates. This paper examines in depth Latinos’ conceptions of depression and their attitudes towards and expectations of mental health treatment. The aim of this paper is to summarize several qualitative studies examining Latinos’ cultural understandings of mental health in general and depression in particular, as well as to obtain information about the barriers to care that this community experienced. The results are a compilation of findings from four different research projects in New Jersey and New York that examined diverse Latinos’ conceptions of mental health, treatment and barriers to care.     

School Personnel Perspectives on their School’s Implementation of a School-Based Suicide Prevention Program

Youth suicide is a national public health priority, with policymakers highlighting schools as an ideal setting in which to deliver suicide prevention programs. Over the past decade, the number of schools implementing such programs has grown substantially, yet little is known about how successfully such programs are being implemented. This study examines the implementation of a district-wide suicide prevention program through key informant interviews with school personnel. Schools with higher rates of implementing district protocols for at-risk students had an organized system to respond to at-risk students, a process for effectively responding to students who were at-risk for suicide, and strong administrative support. In contrast, schools that had lower rates of implementing district protocols relied on a handful of individuals for suicide prevention activities and had limited administrative support. Attention to organizational factors leading to successful implementation of school-based suicide prevention programs may enhance the role of schools in national adolescent suicide prevention efforts.     

Insurance Companies’ Perspectives on the Orphan Drug Pipeline

Background

Rare diseases are of increasing concern to private and public healthcare insurance plans. Largely neglected by manufacturers before the 1983 passing of the Orphan Drug Act (ODA), orphan drugs have become a commercialization target of steadily increasing importance to the healthcare industry. The ODA mandates the coverage of rare diseases, which are defined in research communities as diseases that are so infrequent that there is no reasonable expectation of a drugmaker recovering the cost of developing that drug.

Objectives

To determine the views of leading commercial US payers regarding providing access to and coverage for orphan drugs; to assess whether and to what degree cost-effectiveness analysis (CEA) is viewed by payers as relevant to rare disease coverage.

Methods

The study sample was identified through a call for action sent by America''s Health Insurance Plans to its members, resulting in 4 interviews conducted and 3 completed surveys from a total of 7 companies. These 7 US health insurance companies represent approximately 75% of the US private insurance market by revenue and include approximately 157 million covered lives (using self-reported data from insurance companies). Representatives of 3 companies responded to the survey, and representatives of 4 companies were interviewed via the phone. The interviews were conducted with subject matter experts at each company and included 2 senior vice presidents of a pharmacy program, 1 chief medical director, and 1 head of pharmacoeconomics. The surveys were completed by 1 vice president of clinical pharmacy strategy, 1 chief pharmacy director, and 1 medical director.

Results

Based on the responses in this study, approximately 67% of US private insurance companies are concerned about orphan drugs, but only approximately 17% have developed meaningful strategies for addressing the cost of orphan drugs. Of the companies who do have such a strategy, 100% are unsure how to determine the best economic assessment tools to control orphan drug costs, and two thirds are relying on prior authorization as a means to control costs. More than 80% of the companies are not using cost-effectiveness methodologies with regard to rare diseases, generally because of a lack of the availability of medicines to facilitate such comparisons. CEA is used by less than 20% of our study sample of payers in dealing with orphan drug policies.

Conclusions

Evaluating cost-effectiveness is a valuable strategy for payers seeking to facilitate appropriate access and coverage decision-making related to orphan drugs, but it is not well understood or adapted by private insurance companies. Health economists, along with providers and payers, must work together to design rational methodologies to evaluate the value of orphan drugs, perhaps by adopting cost-effectiveness methodologies to consider a compound''s total research and development and commercialization demands relative to its cost-effectiveness.Rare diseases have recently been identified as a major source of concern for health insurance companies, with some states seeking to shift a portion of the fiscal burden of orphan drugs to patients, much to patients’ concern.1 Rare diseases and orphan drugs, which have also been referred to as “orphan medicine,” “high-cost drugs,” and “rare medicine,” are subjects of increasing and intense study in pharmacoeconomics and cost-effectiveness analysis (CEA).2–4 By current estimates, between 25 million and 30 million Americans (8%-10% of the US population) have 1 of the more than 6800 diseases deemed rare, because they affect less than 200,000 people, which is the threshold used to define a “rare disease.”5In some diseases, defined by the UK''s National Institute for Clinical Excellence as “ultra-orphan diseases,” only a few hundred patients are identified as having that disease.6 More than 350 orphan drugs have been approved by the US Food and Drug Administration (FDA) since the Orphan Drug Act (ODA) was introduced in 1983 (as opposed to <10 approvals in the 1970s).3 Today, many new orphan drugs are in the pharmaceutical pipeline, which is good news for patients and for their physicians, with 193 new orphan drug designation reviews performed by the FDA in the first 6 months of 2013 alone.6,7Diseases with the highest number of orphan drug designations include AIDS (57), melanoma (51), cystic fibrosis (46), acute myeloid leukemia (34), ovarian cancer (34), and pancreatic cancer (33).8 An overview of the orphan drugs that are currently in development is shown in Figure 1.Open in a separate windowFigure 1Orphan Drugs in DevelopmentReprinted from PhRMA. Orphan drugs in development for rare diseases. Report. February 2011. www.phrma.org/sites/default/files/pdf/rarediseases2011.pdf. Accessed November 11, 2012.In 1983, the founding of the National Organization for Rare Disorders led to the passing of the ODA by President Ronald Reagan, which provided significant incentives for manufacturers to develop drugs for orphan diseases.4 Incentives included a longer period of marketing exclusivity for these drugs to recoup development targeted at orphan diseases.4

KEY POINTS

• ▸ Rare diseases were largely ignored by the pharmaceutical industry before the 1983 passing of the Orphan Drug Act.
• ▸ Rare diseases and the drugs developed to treat them are costly for patients, providers, and payers, and their costs continue to rise.
• ▸ This study is based on responses from 7 large health insurance companies representing approximately 75% of the US private insurance market.
• ▸ The analysis shows that few health insurance companies have a meaningful strategy to address the rising costs of orphan drugs.
• ▸ Payers are unsure how to assess the cost of these drugs and rely on prior authorization as the cost-containment strategy, similar to specialty drugs.
• ▸ Cost-effectiveness is a valuable strategy to guide access and coverage decision-making for orphan drugs but is used by less than 20% of the study payers for dealing with orphan drug policies.
• ▸ Cost-effectiveness methodologies should be adopted to consider an orphan drug''s commercial demands relative to its cost and clinical effectiveness.
• ▸ Healthcare stakeholders, including economists, providers, and payers must work together to design rational methodologies for considering the value of orphan drugs.

The FDA has designated at least 2313 medicines as orphan drugs since 1983.3 Although this is good news for countless patients, the issue of orphan drugs is of growing concern for payers, who are faced with covering the high costs of drugs for rare diseases.9 Much of the orphan drug research has occurred through research partnerships with academic institutions.10     

Immigration and Weight Gain: Mexican-American Women’s Perspectives

There is an urgent need for effective and accessible culturally-sensitive weight-loss interventions for the Mexican-American population. It is imperative that cultural factors be taken into account when designing weight-loss interventions targeting this population. As a first step in this direction, this study examined the experiences, concerns, and beliefs regarding diet, weight and weight loss of Mexican-American immigrant women. Focus groups were conducted with Mexican-American women (n = 25) between the ages of 20 and 63, from the Portland, Oregon metropolitan area. Major themes identified in the discussions included important lifestyle changes brought about by immigration, the challenges of adopting “American ways,” lack of nutritional information, and the difficulties in making food choices given the complexities of the family context. Behavioral interventions must provide culturally-centered behavioral strategies addressing some of the difficulties identified in this study. Specific suggestions are provided for the development of weight-loss interventions for this population.     

Providers’ Perspectives on High-Quality Dementia Care in Long-Term Care

ObjectivesTo understand dementia care providers’ perspectives on high-quality care for persons living with dementia (PLWD) in long-term care (LTC).DesignA qualitative study using a directed content analysis approach.Setting and ParticipantsNine national LTC dementia care providers.MethodsWe facilitated 5 listening sessions centered around dementia care philosophies, models, and practices. Two researchers first mapped qualitative data to the Holistic Approach to Transformational Change (HATCh) model for dementia care using a directed content analysis approach. They then identified themes and subthemes emerging from the data using a conventional analysis approach. They coded data iteratively and solicited input from 3 additional researchers to reach consensus where needed. Member checks were performed to ensure the trustworthiness of the data during 2 follow-up listening sessions.ResultsThe 9 participants described the importance of understanding the experiences of PLWDs in order to provide high-quality dementia care and to deliver such care with the residents and their preferences as the focus. They emphasized experiential education as essential for families and all staff, regardless of role. They noted the need to balance safety with resident choice, as well as the corresponding need for facility leadership and regulators to support such choices. The listening sessions revealed areas to foster person-centered care for PLWD, but also highlighted barriers to implementing this philosophy in LTC settings.Conclusions and ImplicationsEmergent themes included care practices that center on resident preferences and are supported by staff with the experiential education and communication skills necessary to relate to and support PLWD. These findings provide contextual information for researchers seeking to identify and test interventions that reflect LTC providers’ priorities for PLWD and emphasize the need to align research priorities with provider priorities.     

‘It’s more funner than doing work’: children’s perspectives on using tablet computers in the early years of school

There is a clamour of voices around the contemporary issue of tablet computers in early years education. A growing body of research presents the potential of tablet computers to transform education, provide unprecedented learning opportunities and positive outcomes for young children and offer rich opportunities for independent learning and collaborative interaction. However, this is tempered with disquiet from a number of sources which posit that digital devices are diminishing children’s play and are an affront to childhood. Many of these polemic debates come from adult perspectives yet children are the key users in the dizzying advancement of technology and their views are a crucial element in understanding the conceptualisation of tablet devices as pedagogical tools. This paper takes a children’s rights approach in acknowledging that children have the right to have their voices heard and their experiences understood. Therefore, this paper seeks to add further insights to the debates on digital technology in early years education by presenting the views of one of the central players within this debate – young children.     

A commentary on Roggli’s “The So-Called Short-Fiber Controversy”

Dr. Victor Roggli republished a “literature review and critical analysis” of the toxicity of short fiber asbestos. His paper was originally prepared and presented at a conference of asbestos defense lawyers. His review omitted published papers that indicate that short fiber asbestos is a carcinogen. We critically review his paper.     

African American Women’s Perspectives on Donating Healthy Breast Tissue for Research: Implications for Recruitment

African American women die of breast cancer at a higher rate than any other racial group. The Komen Tissue Bank (KTB) is an ongoing clinical trial that collects healthy breast tissue from women of all racial groups to use as controls in research and represents a critical tool in efforts to treat and prevent breast cancer; however, African Americans display reticence toward donating breast tissue to the KTB. Through the lens of the Integrated Behavioral Model, this study recruited African American women to share their perspectives on donating breast tissue for research purposes. Seventy-one (N = 71) eligible Black women who were previous tissue donors to the KTB responded to an online questionnaire. Findings revealed that (a) participants had positive instrumental attitudes or reasons for donating; (b) participants felt generally supported in their decision to donate, but revealed that the lack of Black women participating in the KTB meant that they themselves were setting the norm for others; and (c) their race was an important element in their donation decision. While acknowledging the negative history of African Americans in medical research, they offered their perceptions regarding the importance of involving themselves in medical research, and suggested that health communication strategies to recruit African Americans into research should embrace race as part of the message. The findings from this study have important implications for other those who work in applied clinical settings and are interested in addressing racial disparities in medical research through more effective and targeted recruitment messaging.     

Predictors of Parent Engagement Based on Child Care Providers’ Perspectives

Objective

Determine the predictors of child care providers’ parent engagement regarding child nutrition in child care centers (CCCs) and family child care homes (FCCHs).

“It’s on everyone’s plate”: a qualitative study into physicians’ perceptions of responsibility for smoking cessation

Background

Little research has investigated in-depth how physicians perceive their role in smoking cessation care. This qualitative study sought to understand physicians’ perceptions of responsibility for smoking cessation.

Methods

Data were collected through individual semi-structured interviews and focus group interviews between June and November 2017 in The Netherlands. We interviewed 5 addiction specialists, 5 anesthesiologist, 4 cardiologists, 8 GPs, 5 internists, 5 neurologists, 2 pediatricians, 6 pulmonologists, 7 surgeons, and 8 youth healthcare physicians (N?=?55). Data analysis followed the framework approach.

Results

The analysis showed that three actors were perceived as responsible for smoking cessation: physicians, patients, and the government. Participants perceived physicians as responsible for facilitating smoking cessation -albeit to different extents-, patients as carrying the ultimate responsibility for quitting smoking, and the government as responsible for creating a society in which smoking uptake is more difficult and quitting smoking easier. Perceptions of smoking itself were found to be important for how participants viewed responsibility for smoking cessation. It remained unclear for many participants which healthcare provider is responsible for smoking cessation care.

Conclusions

The organization of smoking cessation care within health systems should be a focus of intervention, to better define physician roles and perceptions of responsibility. In addition, it seems important to target perceptions of smoking itself on the level of physicians and –as suggested by comments by several participants- the government.

     

“Patient’s lived experience”

Medicine, Health Care and Philosophy - This editorial presents a special issue gathering four contributions about the patient’s lived experience in the context of deep-brain stimulation. It...     

Black Women’s Perspectives on Structural Racism across the Reproductive Lifespan: A Conceptual Framework for Measurement Development

Maternal and Child Health Journal - Exposures to structural racism has been identified as one of the leading risk factors for adverse maternal and infant health outcomes among Black women; yet...