Patient and Patient Group Engagement in Cancer Clinical Trials: A Stakeholder Charter

Background—to guide the implementation of patient centricity and engagement in cancer clinical trials (CTs) and to operationalize the Canadianized version of the Clinical Trials Transformation Initiative (C-CTTI) model, the development of a charter was identified by cancer CT stakeholders. Methods—the Canadian Cancer Trial Stakeholder Charter (the Charter) was initiated by Colorectal Cancer Canada (CCC) and developed via the—1—formation of an inclusive working group (WG) that drafted the document using recommendations collected during the development of the C-CTTI model; 2—socialization of the draft Charter to solicit feedback from cancer CT stakeholders, including those who attended the 2019 CCC Conference; and 3—incorporation of stakeholders’ feedback and finalization of the Charter by the WG. Results—the Charter was built around five guiding principles—1—patient centricity; 2—commitment to education and training; 3—collaboration as equal and independent partners in research; 4—transparency and accountability; and 5—high standards in data collection integrity and honesty. These principles led to the Charter’s five tenets, which stipulate stakeholder commitments, aiming to make CTs accessible to all patients, improve the design and implementation of CTs to benefit patients, expand recruitment and retention of patients in CTs, and further advance cancer research and treatment. Conclusions—the Charter is intended to integrate the patient voice into the Canadian cancer CT continuum. The next phases of the C-CTTI model include the adoption and implementation of the Charter, the establishment of a patient group training program, and the development of real-world evidence/real-world data methodologies.     

A survey on the prevalence of high-risk subtypes of human papilloma virus among women with cervical neoplasia in Isfahan University of Medical Science

Aim  

Given the importance of epidemiological studies on the prevalence of human papilloma virus (HPV) and its subtypes to plan more effective strategies for cervical cancer prevention, the aim of this study was to determine the prevalence of HPV in women with cervical intraepithelial neoplasia and cancer in Isfahan.     

Midwives¿ views on factors that contribute to health care inequalities among immigrants in Sweden: A qualitative study

ABSTRACT: INTRODUCTION: Ethnic and socioeconomic inequalities in the Swedish health care system have increased. Most indicators suggest that immigrants have significantly poorer health than native Swedes. The purpose of this study was to explore the views of midwives on the factors that contribute to health care inequality among immigrants. METHODS: Data were collected via semi-structured interviews with ten midwives. These were transcribed and related categories identified through content analysis. RESULTS: The interview data were divided into three main categories and seven subcategories. The category "Communication" was divided into subcategories "The meeting", "Cultural diversity and language barriers" and "Trust and confidence". The category "Potential barriers to the use of health care services" contained two subcategories, "Seeking health care" and "Receiving equal treatment". Finally, the category "Transcultural health care" had subcategories "Education on transcultural health care" and "The concept". CONCLUSIONS: This study suggests that midwives believe that health care inequality among immigrants can be the result of miscommunication which may arise due to a shortage of meeting time, language barriers, different systems of cultural beliefs and practices and limited patient-caregiver trust. Midwives emphasized that education level, country of origin and length of stay in Sweden play a role when an immigrant seeks health care. Immigrants face more difficulties when seeking health care and in receiving adequate levels of care. However, different views among the midwives were also observed. Some midwives were sensitive to individual and intra-group differences, while some others viewed immigrants as a group of "others". Midwives' beliefs about subgroup-specific health services vs. integrating immigrants' health care into mainstream health care services should be investigated further. Patients' perspective should also be considered.     

Dental Problems in Hypophosphatemic Rickets,a Cross Sectional Study

Objective

Hypophosphatemic rickets is an uncommon metabolic bone disorder which affects all ages and both sexes. It is characterized by low concentration of serum phosphate levels, impairment of mineralization of bone matrix and teeth with variable etiology. Dental problems in this disorder have not been described well in previous studies.

Methods

All hypophosphatemic rickets patients who came to a referral clinic during 2008-2010 enrolled in this study. All patients had low phosphorous and high ALP, normal PTH and 25-hydroxy-vitamin D and normal or low level of serum calcium. After diagnosis all patients were examined by a dentist for enamel hypoplasia, taurodontism, dental abscess, gingivitis, dental caries, and dentition delay.

Findings

Nineteen patients were enrolled in this study. The average age of the patients was 10 (±4.23) years (range 3-17). Seventy-nine percent of patients had regular follow-up after diagnosis of background disease. Dental caries and delay in the dentition were most prevalent (each one 47.7%) followed by enamel hypoplasia in 42.1% of the patients. Other problems were taurodontism in 15.8% patients, dental abscess and gingivitis in 10.9%.

Conclusion

Hypophosphatemic rickets is a disease with different clinical features; one of them is dental problem, dental caries is the most common problem.     

Midwives' experiences of doula support for immigrant women in Sweden--a qualitative study

Objective

to describe and analyse midwives’ experiences of doula support for immigrant women in Sweden.

Design

qualitative study, analysed using content analysis. Data were collected via interviews.

Setting

interviews were conducted at the midwives’ workplaces. One midwife was interviewed at a cafe.

Participants

ten midwives, who participated voluntarily and worked in maternity health care in western Sweden.

Findings

the interview data generated three main categories. (1) ‘A doula is a facilitator for the midwife’ has two subcategories, ‘In relation to the midwife’ and ‘In comparison with an interpreter’, (2) ‘Confident women giving support,’ has two subcategories, ‘Personal characteristics and attitudes’ and ‘Good support,’ (3) ‘Doulas cover shortcomings’ has two subcategories, ‘In relation to maternity care’ and ‘In relation to ethnicity’.

Key conclusion and implications for practice

The findings of this study show that midwives experience that doulas are a facilitator for them. Doulas provide support by enhancing the degree of peace and security and improving communication with the women in childbirth. Doulas provide increased opportunities for transcultural care. They may increase childbearing women's confidence and satisfaction, help meet the diverse needs of childbearing women and improve care quality.     

What can we learn from the age- and race/ethnicity- specific rates of inflammatory breast carcinoma?

Inflammatory Breast Carcinoma (IBC), the most aggressive type of breast tumor with unique clinicopathological presentation, is hypothesized to have distinct etiology with a socioeconomic status (SES) component. Using the Surveillance, Epidemiology and End Results (SEER) Program data for 2004–2007, we compare incidence rates of IBC to non-inflammatory locally advanced breast cancer (LABC) among racial/ethnic groups with different SES. The analysis includes women 20–84 years of age. To examine evidence for the distinct etiology of IBC, we analyzed age-distribution patterns of IBC and non-inflammatory LABC, using a mathematical carcinogenesis model. Based on the Collaborative Staging Extension codes, 2,942 incident IBC cases (codes 71 and 73) and 5,721 non-inflammatory LABC cases (codes 40–62) were identified during the four-year study period. Age-adjusted rates of IBC among non-Hispanic White and Hispanic women were similar (2.5/100,000 in both groups). Similar rates were also found in non-inflammatory LABC in these two groups (4.8/100,000 and 4.2/100,000, respectively). In African-American women, the IBC (3.91/100,000) and non-inflammatory LABC (8.47/100,000) rates were greater compared with other ethnic/racial sub-groups. However, the ratio of rates of IBC/non-inflammatory LABC was similar among all the racial/ethnic groups, suggesting that African-American women are susceptible to aggressive breast tumors in general but not specifically to IBC. The mathematical model successfully predicted the observed age-specific rates of both examined breast tumors and revealed distinct patterns. IBC rates increased until age 65 and then slightly decreased, whereas non-inflammatory LABC rates steadily increased throughout the entire age interval. The number of critical transition carcinogenesis stages (m-stages) predicted by the model were 6.3 and 8.5 for IBC and non-inflammatory LABC, respectively, supporting different etiologies of these breast tumors.     

Environmental risk factors in neuromyelitis optica spectrum disorder: a case–control study

Neuromyelitis optica spectrum disorder (NMOSD) has unknown risk factors. The aim of this study was to identify the environmental risk factors for NMOSD. A case–control study was conducted in Tehran from 2015 to 2016 among 100 patients with NMOSD. Sex-matched healthy controls (n = 400) were selected through random digit dialing (RDD). Logistic regression was used to estimate unadjusted and adjusted ORs (odds ratio) at 95% confidence intervals (CI) via SPSS. Compared with the control population, in NMOSD patients, the adjusted OR for low dairy consumption per week was (OR = 18.09; 95% CI 6.91, 47.37), following low sea food intake (OR = 13.91; 95% CI 6.13, 31.57) and low fruit and vegetable consumption (OR = 6.23; 95% CI 3.07, 12.62). The lower heavy physical activity (OR: 16.11, 95% CI 7.03, 36.91) among patients had risen the risk of NMOSD. A past history of head trauma was considered a risk for NMOSD (OR: 8.39, 95% CI 4.97, 14.16). The association between NMOSD and intentional abortion only among females (OR: 7.42, 95% CI 2.81, 19.55) was detected. This study indicates significant associations between dietary habits, life style, history of head trauma and intentional abortion in female and the later diagnosis of NMOSD.     

EBV and CMV in chronic periodontitis: a prevalence study

Periodontitis is an infectious disease involving specific bacteria and viruses. Herpesviruses believed to play roles in it. The present study examines the presence of Epstein-Barr virus (EBV) and cytomegalovirus (CMV) in subgingival and supragingival plaque of 61 patients with chronic periodontitis and 40 healthy controls. A nested polymerase chain reaction method was used. The clinical parameters, clinical attachment level (CAL), probing depth (PD) and bleeding on probing (BOP) were examined. Prevalence of EBV- 1, EBV-2 and CMV were 73.8%, 4.9% and 59%; respectively. There was no association between the presence of EBV-1, EBV-2 and CMV with bleeding on depth.