Do patients’ information needs decrease over the course of radiotherapy?

Purpose

We aimed to investigate if cancer patients’ information needs decrease during radiotherapy and if so, which patient, consultation and radiation oncologist characteristics are associated with a decrease in information needs over time.

Methods

In this longitudinal study, patients (n?=?104) completed a baseline questionnaire a week before the initial radiotherapy consultation, immediately following this initial consultation, and 1?week prior to the first follow-up visit, which took place on average 3–5?weeks after the initial visit. Besides information needs, measured by the Information Preference for Radiotherapy Patients scale, the questionnaire assessed patient, consultation and radiation oncologist characteristics.

Results

Information needs decreased over time, but remained at a high level. Being religious, being male, having low health literacy and higher perceived involvement during the consultation were all statistically significantly associated to a decrease in information needs on specific domains (e.g. procedures or side effects).

Conclusions

Cancer patients’ information needs decline between the initial consultation and the first follow-up visit, but remain high. It is therefore advised to investigate the patients’ information needs at every radiotherapy visit and not rely on giving information just once. Furthermore, radiation oncologists should check if the information given at first consultation is understood and remembered. By those means, tailored information giving becomes possible.     

B-cell activating factor levels in rheumatoid arthritis patients in response to treatment with biologics

The B-cell-activating factor (BAFF), a member of the tumor necrosis factor (TNF) family, has recently attracted attention as a potent cytokine, involved in B-cell stimulation and survival of autoimmune cells. Despite its significance in the pathogenesis of autoimmune diseases, data is limited and inconclusive regarding its expression in different stages of rheumatoid arthritis (RA). The aim of this study was to assess BAFF in biologic-na?ve RA patients with early versus established disease and monitor its levels in response to anti-TNF treatment in seronegative- and seropositive patients. Based on our results, B-cell-activating factor (BAFF) did not appear to be overexpressed or differentially expressed early (≤2 years duration) in comparison to established rheumatoid arthritis (RA). Moreover, tumor necrosis factor (TNF) blockade did not appear to affect BAFF levels in either seropositive or seronegative RA patients, despite the association of anti-TNF treatment with the development of autoantibodies and the known anti-apoptotic effects of BAFF. As expected, BAFF became induced after B-cell depletion. Investigation of the effect of different biologics on the expression of BAFF and other cytokines will help elucidate the interconnecting immune pathways involved in the initiation and perpetuation of the inflammatory process.     

Psychological distress and quality of life of partners of individuals with familial adenomatous polyposis

Objective: Familial adenomatous polyposis (FAP) is a genetic condition characterized by the development of multiple adenomas in the colorectum that could lead to colorectal cancer. Our aim was to assess levels and predictors of psychological distress and quality of life (QOL) among partners of FAP‐patients. Methods: A nationwide, cross‐sectional survey using validated self‐report questionnaires assessing psychological distress and QOL. Results: One hundred and twenty‐nine partners completed the questionnaire (84% response rate), 30% of whom reported moderate‐to‐severe levels of distress. The partners' distress was associated significantly with the patients' distress, having children, and feelings of guilt. Fifty‐seven percent of the partners with moderate‐to‐severe distress levels had received professional psychosocial support. Partners did not differ significantly from the general population in QOL. However, 9–21% reported that FAP had affected their work, leisure time activities, and relationships. Conclusions: Clinicians should be particularly alert for heightened distress levels in partners of patients who are themselves distressed, and among those with children. Copyright © 2010 John Wiley & Sons, Ltd.     

Attitudes toward genetic testing in childhood and reproductive decision-making for familial adenomatous polyposis

Childhood DNA testing, prenatal diagnosis (PND) and preimplantation genetic diagnosis (PGD) are available for familial adenomatous polyposis (FAP). However, the use of PND and PGD is controversial. The purpose of this study was to investigate attitudes toward, and experiences with, childhood DNA testing, PND and PGD among members of families at high risk for FAP. In this nationwide, cross-sectional study, questionnaires were sent to individuals from families at high risk for FAP assessing attitudes toward and experiences with childhood testing, PND and PGD, as well as several sociodemographic, clinical and psychosocial variables. Of the individuals from FAP families invited to participate in the study, 525 members participated (response rate=64%). Most parents who had children who were minors (n=93) (82%) were satisfied with the DNA testing procedure. One-third of all individuals wanted DNA testing for their children before age 12. Forty percent of FAP patients indicated that the disease influenced their desire to have children. Only 15% considered termination of pregnancy for FAP acceptable. Approximately 30% of individuals with a FAP diagnosis and their partners considered PND and PGD as acceptable for themselves. A positive attitude was associated with higher levels of guilt and a positive attitude toward termination of pregnancy. Importantly, of those with FAP at childbearing age, 84% had had no previous information at all about either PND or PGD. Future efforts should be aimed at educating FAP family members about reproductive options, allowing them to make an informed choice about family planning. Routine discussion of all reproductive options with a medical specialist should be encouraged.     

FVC to slow inspiratory vital capacity ratio: a potential marker for small airways obstruction

BACKGROUND: The ratio of FVC to slow inspiratory vital capacity (SVC) has been reported to reflect small airways obstruction, but its validity as such is still unclear. The aim of this study was to assess the applicability of the FVC/SVC ratio as a marker of small airways function in patients with bronchiolitis obliterans syndrome (BOS) after lung transplantation (LTX), which is a disorder in which predominantly small airways obstruction causes progressive airflow limitation. METHODS: The FVC/SVC ratio was analyzed both cross-sectionally and longitudinally in 39 patients (26 men) with BOS after bilateral LTX (median age, 47 years; interquartile range [IQR], 35 to 54 years), and 36 bilateral lung transplant recipients without BOS (14 men; median age, 46 years; IQR, 41 to 53 years). RESULTS: The FVC/SVC ratio decreased significantly during follow-up in patients with BOS stages 1 and 2, by 2.2% and 4.4%, respectively, from baseline (p < 0.001). This decrease was not significantly associated with the decrease in FEV(1). The FVC/SVC ratio increased, though not significantly, in the group in which BOS did not develop by 1.1%, which is a significant difference from the average fall of 4.4% in the group in which BOS developed. CONCLUSIONS: Significant, yet small decreases in FVC/SVC ratio occur in patients in whom BOS develops, independent from changes in FEV(1). At a group level, FVC/SVC ratio is able to detect small airways changes. These results merit prospective studies to determine the sensitivity of FVC/SVC ratio to quantifying small airways dysfunction at an individual level and in other airway diseases.