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. METHODS: Participants were recruited via clinic flyers and the social media page of a chronic pain research laboratory. Participants completed an online survey that assessed their knowledge of fibromyalgia via open-ended questions. Responses were analyzed via thematic analysis to identify, analyze, and report themes. RESULTS: Thirty-eight participants completed the survey (63% female, ages 18-68). Common themes that arose from patients included being unsure of the cause of their fibromyalgia, frustration and confusion about the random/variable nature of symptoms and flares, feeling that their condition was invisible, and desiring more information on available treatments. CONCLUSION: Participants in this study expressed confusion about many aspects of fibromyalgia and a desire for more understanding from others in their life about this condition. PRACTICE IMPLICATIONS: Future interventions would benefit from tailoring fibromyalgia education to the specific knowledge and lived experiences of patients.

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

Purpose: 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. In addition, the relationship between health competence beliefs and HRQOL, as well as the moderating effect of cancer survivorship, was investigated. Methods: Survivors (n = 49) and healthy peers (n = 54) completed measures about health competence beliefs (i.e., Health Perception, Cognitive Competence, Autonomy, and School/Work Functioning) and HRQOL. Multiple group analysis was used to investigate differences in health competence beliefs and HRQOL between survivors and peers. Multivariate multiple regression analyses were used to investigate the relationships between health competence beliefs and HRQOL. Finally, a history of cancer was examined as a possible moderator using additional multivariate multiple regression analyses. Results: Survivors reported significantly lower Health Perception, Cognitive Competence, Autonomy, and School/Work Functioning scores compared to healthy peers. Among both groups, Health Perception and Cognitive Competence scores were associated with multiple domains of HRQOL. These relationships were not moderated by having a history of cancer. Conclusions: Perceptions about one's health and cognitive abilities may impact HRQOL among AYA survivors of childhood cancer and health peers. Identifying those at risk for poor well-being may help to guide interventions aimed at increasing adherence to medical recommendations.

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. METHODS: A multiple logistic regression analysis of the first-time distress rating scale of 1,209 patients from 2005-2009 was conducted to determine whether nonphysical items on the DT significantly contributed to a patient falling into one of two categories. FINDINGS: This study provides evidence that emotional variables are particularly significant for patients who are at risk for distress and, consequently, should be prioritized for intervention when endorsed on the DT problem list.

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. In addition, the Agency for Healthcare Research and Quality (AHRQ) system for rating the strength of scientific evidence was used to assess the quality of studies included in the review. RESULTS: Nineteen studies met criteria for review. There was mixed evidence for general relationships between perceived racism/discrimination and health. Consistent evidence was found for the relationship between adverse birth outcomes, illness incidence, and cancer or tumor risk and perceived racism/discrimination. Inconsistent findings were found for the relationship between perceived racism/discrimination and heart disease risk factors. There was no evidence to support the relationship between perceived racism/discrimination and high blood pressure. CONCLUSIONS: There is mixed evidence to support the association between perceived racism/discrimination and overall objective health outcomes among black American women. The strongest relationship was seen between perceived racism/discrimination and adverse birth outcomes. Better understanding of the relationship between health and racism/discrimination can aid in identifying race-based risk factors developing primary prevention strategies. Future studies should aim to investigate the role of perceived racism/discrimination as a specific chronic stressor within discrete pathogenesis models.

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. The screening tool was based on the distress thermometer (DT) scale and a modified problem list. Odds ratios and 95 % confidence intervals from this multivariable model were computed. RESULTS: Statistical analysis revealed that the items on the problem list that most contribute to being at risk for distress include financial, worry, nervousness, getting around, and sleep. The most highly associated risk factor for distress was worry. Those that were at risk for high distress were 5.57 times more likely to endorse problems related to worry. CONCLUSIONS: This research identifies which factors may be especially salient to the patient's perception of distress and help guide clinicians in developing targeted screening strategies and specific interventions based on patient response to the DT. It also points to the need for future research to more clearly characterize distress from the patient perspective and determine when interventions may be indicated.

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. As licensure for adult women, over 26 years, is sought in other countries, it will be important to determine the acceptability to them. We reviewed the available articles on adult opinions and acceptability of vaccinating women against HPV. Predictors of acceptability included barriers, knowledge, risk, age, and marital status. Overall, acceptability rates were high, if adequate information was given and the cost was affordable.