The need for primary care providers in the clinical management of hypermobility spectrum disorders and ehlers-danlos syndrome: a call to action.

Patients with joint-hypermobility and joint-hypermobility spectrum disorders (HSD), including hypermobile Ehlers-Danlos Syndromes (EDS) present numerous co-morbid concerns, and multidisciplinary care has been recommended. The complexity of these patient's needs and increased demand for medical services have resulted in long delays for diagnosis and treatment and exhausted extant clinical resources. Strategies must be considered to ensure patient needs are met in a timely fashion.

Patient and Parent Knowledge, Understanding, and Concerns After a New Diagnosis of Ehlers Danlos Syndrome.

Introduction: After diagnosis of Ehlers Danlos Syndrome (EDS), it is unclear what information patients and parents need and understand about EDS. The objective of this study is to characterize patient and parent knowledge and concerns about EDS after a diagnosis of EDS is made to determine patient and parent concerns and identify barriers that cause discomfort with the diagnosis.

Methods: A convenience sample of patient and parent dyads were recruited after new diagnosis of EDS.

Investigation of patients' understanding of fibromyalgia: Results from an online qualitative survey.

Objective: An important component to effective fibromyalgia treatment is patient education about the condition. While previous educational interventions have been developed, these have not incorporated the lived experiences of patients and may not address common misunderstandings among those who may benefit from these interventions. This study aimed to explore understanding, confusion, and gaps in knowledge about fibromyalgia among those who report a fibromyalgia diagnosis.

Barriers to the Diagnosis, Care, and Management of Pediatric Patients With Ehlers-Danlos Syndrome in the United States: A Qualitative Analysis.

Ehlers-Danlos Syndromes (EDS) are a family of heritable connective tissue diseases. Primary practitioners are capable of diagnosing and managing EDS; however, few are knowledgeable and comfortable enough to see patients with EDS, resulting in delays in diagnosis and care. This study explores the barriers physicians experience with diagnosing, managing, and caring for patients with EDS, and potential resolutions to those barriers.

Health Competence Beliefs and Health-Related Quality of Life Among Adolescent and Young Adult Survivors of Childhood Cancer and Healthy Peers.

Adolescent and young adult (AYA) survivors of childhood cancer are at risk for late-effects that can impact how one perceives their health and well-being. Understanding beliefs about health competence and well-being among survivors can help identify support needs and increase adherence to long-term follow-up guidelines. This study examined differences in health competence beliefs and health-related quality of life (HRQOL) between AYA survivors of childhood cancer and matched healthy peers.

Significance of Nonphysical Predictors of Distress in Cancer Survivors.

Background: The Distress Thermometer (DT) is a well-validated tool that is frequently used in patients with cancer to screen for general distress and to generate referrals. However, a majority of the DT problem list items relate to physical concerns; this may lead to psychosocial issues being overshadowed.

Objectives: The purpose of the current study is to examine the endorsement rates for nonphysical items, as well as the relationship between these items and overall DT scores.

The Relationship Between Perceived Racism/Discrimination and Health Among Black American Women: a Review of the Literature from 2003 to 2013.

Objectives: The purpose of this paper was to systematically review the literature investigating the relationship between perceived racism/discrimination and health among black American women.

Methods: Searches for empirical studies published from January 2003 to December 2013 were conducted using PubMed and PsycInfo. Articles were assessed for possible inclusion using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) 2009 framework.

An analysis of the distress thermometer problem list and distress in patients with cancer.

Purpose: Patients with a cancer diagnosis experience complex issues that can cause distress. The purpose of this study is to identify factors associated with overall distress for a diverse population of cancer survivors.

Methods: Researchers conducted a secondary data analysis of distress ratings (n = 1205) for people receiving outpatient care at a Midwestern US cancer center from 2005 to 2009 to describe the relationships between distress factors and need for assessment of distress.

Literature review of human papillomavirus vaccine acceptability among women over 26 years.

Vaccines for the human papillomavirus (HPV) are currently licensed for females, ages 9 through 26 years old in the U.S., and for adult women up to 45 years in some countries such as Australia.