An Exploratory Study of Self-reported Quality of Life in Children with Autism Spectrum Disorder and Intellectual Disability

We examined the content validity of the Pediatric Quality of Life Inventory? Young Child Self-report (PedsQL?-YC) in children with autism spectrum disorder (ASD) and intellectual disability and made recommendations for the development of a quality of life (QOL) measure. Ten children, 14 parents, and three teachers were recruited for focus groups and interviews. Focus groups and interviews were conducted to obtain their perceptions about the appropriateness of the PedsQL^TM-YC (Phase 1). Based on the results from Phase 1, recommendations for a QOL measure for children with ASD and intellectual disability were made (Phase 2). After piloting a QOL measure by children and subsequent interviews, further refinement was undertaken (Phase 3). Data from Phases 1 and 3 were analysed using thematic and content analyses. Findings suggest that a QOL measure for children with ASD and intellectual disability should be related specifically to the children’s daily life and contexts. Due to the specific cognitive and behavioural characteristics of this population, the wording, response options and presentation style of the existing PedsQL?-YC would need refinement. Questions about social interactions with friends appeared less relevant to children with ASD. These recommendations address the wording and formatting issues needed for a QOL measure for use in children with ASD and intellectual disability identified through qualitative research methods. Further research is needed to include additional or modified questions in the social domain.     

Proteomics analysis of Hodgkin lymphoma: identification of new players involved in the cross-talk between HRS cells and infiltrating lymphocytes

Hodgkin and Reed-Sternberg (HRS) cells in Hodgkin lymphoma (HL) secrete factors that interact with inflammatory background cells and may serve as biomarkers for disease activity. To detect new proteins related to pathogenesis, we analyzed the secretome of HRS cells. Proteins in cell culture supernatant of 4 HL cell lines were identified using 1DGE followed by in-gel trypsin digestion and LC-MS/MS. In total, 1290 proteins, including 368 secreted proteins, were identified. Functional grouping of secreted proteins revealed 37 proteins involved in immune response. Sixteen of the 37 proteins (ie, ALCAM, Cathepsin C, Cathepsin S, CD100, CD150, CD26, CD44, CD63, CD71, Fractal-kine, IL1R2, IL25, IP-10, MIF, RANTES, and TARC) were validated in HL cell lines and patient material using immunohistochemistry and/or ELISA. Expression of all 16 proteins was confirmed in HL cell lines, and 15 were also confirmed in HL tissues. Seven proteins (ALCAM, cathepsin S, CD26, CD44, IL1R2, MIF, and TARC) revealed significantly elevated levels in patient plasma compared with healthy controls. Proteomics analyses of HL cell line supernatant allowed detection of new secreted proteins, which may add to our insights in the interaction between HRS cells and infiltrating lymphocytes and in some instances might serve as biomarkers.     

Should Pathologists Routinely Report Prostate Tumour Volume? The Prognostic Value of Tumour Volume in Prostate Cancer

Background

The independent prognostic value of tumour volume in radical prostatectomy (RP) specimens is controversial, and it remains a matter of debate whether pathologists should report a measure of tumour volume. In addition, tumour volume might be of value in substaging of pathologic tumour stage (pT2) prostate cancer (PCa).

Objective

To assess the prognostic value of PCa tumour volume.

Design, setting, and participants

The cohort consisted of 344 participants in the European Randomised Study of Screening for Prostate Cancer (ERSPC), Rotterdam section, whose PCa was treated with RP. Mean time of follow-up was 96.2 mo.

Measurements

Tumour volume was measured in totally embedded RP specimens with a morphometric, computer-assisted method and assessed as a continuous variable, as relative tumour volume (tumour volume divided by prostate volume), and in a binary fashion (≥0.5 ml or <0.5 ml). These variables were related to prostate-specific antigen (PSA) progression, local recurrence, or distant metastasis and PCa-related mortality using univariate and multivariable Cox proportional hazards analyses. The analyses were repeated in the subgroup with pT2 tumours.

Results and limitations

Tumour volume was related to tumour stage, Gleason score, seminal vesicle invasion (SVI), and surgical margin status. In univariate analyses, tumour volume and relative tumour volume were predictive for all outcome variables. In multivariable analyses, including age, tumour stage, Gleason score, SVI, and surgical margin status, neither tumour volume nor relative volume were independent predictors of progression or mortality. Tumour volume ≥0.5 ml was predictive for PSA recurrence and local and/or distant progression in univariate analyses but not in multivariable analyses. Tumour volume was not predictive for recurrence or mortality in univariate or multivariable analyses in the pT2 subgroup.

Conclusions

Tumour volume did not add prognostic value to routinely assessed pathologic parameters. Therefore, there seems to be little reason to routinely measure tumour volume in RP specimens.     

Anxiety and distress during active surveillance for early prostate cancer

BACKGROUND:

Patients on active surveillance (AS) for early prostate cancer (PC) may experience feelings of anxiety and distress while living with “untreated” cancer. In this study, these feelings were quantified, and their associations with various psychologic, medical, demographic, and decision‐related factors were assessed.

METHODS:

Men with recently diagnosed PC who participated in a prospective protocol‐based AS program (the Prostate Cancer Research International: Active Surveillance study [PRAIS]) received a questionnaire (N = 150). Scores concerning decisional conflict (the Decisional Conflict Scale), depression (the Center for Epidemiologic Studies Depression Scale), generic anxiety (the abridged State‐Trait Anxiety Inventory), and PC‐specific anxiety (the Memorial Anxiety Scale for Prostate Cancer) were compared with reference values and the literature. Associations with scores on physical health (the Medical Outcomes Study 12‐item short‐form Physical Component Summary), personality (the Eysenck Personality Questionnaire), shared decision‐making, knowledge of PC, and demographic and medical parameters were determined with univariate and multivariate linear regression analyses.

RESULTS:

The questionnaire response rate was 86% (129 of 150 men). Of all respondents, 81%, 92%, 83%, and 93% scored better than reference values for clinically significant uncertainty regarding the treatment decision, depression, generic anxiety, and PC‐specific anxiety, respectively. Scores were comparable to or more favorable than those of men (reported in literature) who underwent other treatments for localized PC. In multivariate analysis, the following associations emerged: a perceived important role of the physician in shared decision‐making was associated with higher decisional conflict, better physical health was associated with lower depression, neurotic personality was associated with higher depression and with generic and PC‐specific anxiety, and higher prostate‐specific antigen level was associated with higher PC‐specific anxiety.

CONCLUSIONS:

Men on protocol‐based AS mainly reported favorable levels of anxiety and distress. A neurotic personality score was associated with unfavorable effects. These findings may help to optimize patient selection for AS or to select men for supportive measures. Cancer 2009. © 2009 American Cancer Society.     

The impact of healthcare costs in the last year of life and in all life years gained on the cost-effectiveness of cancer screening

It is under debate whether healthcare costs related to death and in life years gained (LysG) due to life saving interventions should be included in economic evaluations. We estimated the impact of including these costs on cost-effectiveness of cancer screening. We obtained health insurance, home care, nursing homes, and mortality data for 2.1 million inhabitants in the Netherlands in 1998–1999. Costs related to death were approximated by the healthcare costs in the last year of life (LastYL), by cause and age of death. Costs in LYsG were estimated by calculating the healthcare costs in any life year. We calculated the change in cost-effectiveness ratios (CERs) if unrelated healthcare costs in the LastYL or in LYsG would be included. Costs in the LastYL were on average 33% higher for persons dying from cancer than from any cause. Including costs in LysG increased the CER by €4040 in women, and by €4100 in men. Of these, €660 in women, and €890 in men, were costs in the LastYL. Including unrelated healthcare costs in the LastYL or in LYsG will change the comparative cost-effectiveness of healthcare programmes. The CERs of cancer screening programmes will clearly increase, with approximately €4000. However, because of the favourable CER''s, including unrelated healthcare costs will in general have limited policy implications.     

Digital rectal examination and the diagnosis of prostate cancer--a study based on 8 years and three screenings within the European Randomized Study of Screening for Prostate Cancer (ERSPC), Rotterdam

Background

Evidence indicates that an abnormal digital rectal examination (DRE) is a risk factor for high-grade prostate cancer (PC).

Objective

To determine whether men with an initially suspicious DRE, a prostate-specific antigen (PSA) level ≥3.0 ng/ml, and a benign prostate biopsy are at higher risk for significant PC at rescreening than men with an initially normal DRE, and whether an adaptation of the rescreening interval is warranted for this group.

Design, Setting, and Participants

Within the European Randomized Study of Screening for Prostate Cancer (ERSPC), Rotterdam, 2218 men underwent biopsy of the prostate (from 1993 to 2000) with a benign result at initial screening. The serum PSA was determined every 4 yr. A PSA level of ≥3.0 ng/ml prompted a DRE and a lateralised sextant biopsy.

Measurements

Number and characteristics of PCs found at repeat screenings and as interval cancers (ICs) were compared between men with or without a suspicious DRE result at initial screening. Multivariate logistic regression analyses were performed to evaluate if an initially suspicious DRE was a significant predictor for detecting cancer at consecutive screenings.

Results and Limitations

After 4 yr, the total number of PCs detected in men with and without an initially suspicious DRE was, respectively, 27 (6%) versus 103 (6%) (p = 0.99). After 8 yr these numbers increased, respectively, to,45 (10%) versus 167 (10%) (p = 0.88). The proportion of clinically significant PCs was 2% and 3%, respectively, for the group with initially normal and abnormal DRE after 8 yr. Having a suspicious DRE result at initial screening was not a significant predictor for detecting PC after 4 yr [odds ratio (OR) = 1.15, p = 0.59) or 8 yr (OR = 1.41, p = 0.43)]. A limitation of this study is the relatively short follow-up of 8 yr.

Conclusions

During a follow-up of 8 yr after initial cancer-negative biopsy, an initially suspicious DRE did not influence the chance for detection of cancer or significant cancer at later screens. An adaptation of the rescreening interval on the basis of the initial DRE-outcome is not warranted in future population-based screening for prostate cancer.     

Dialogical nursing ethics: the quality of freedom restrictions

This article deals with the question of how ethicists respond to practical moral problems emerging in health care practices. Do they remain distanced, taking on the role of an expert, or do they become engaged with nurses and other participants in practice and jointly develop contextualized insights about good care? A basic assumption of dialogical ethics entails that the definition of good care and what it means to be a good nurse is a collaborative product of ongoing dialogues among various stakeholders engaged in the practice. This article discusses the value of a dialogical approach to ethics by drawing on the work of various nursing scholars. We present a case example concerning the quality of freedom restrictions for intellectually disabled people. Issues for discussion include the role and required competences of the ethicist and dealing with asymmetrical relationships between stakeholders.     

Minority Stress and Loneliness in a Global Sample of Sexual Minority Adults: The Roles of Social Anxiety,Social Inhibition,and Community Involvement

Research suggests that loneliness among sexual minority adults is associated with marginalization, but it is unclear which processes may underlie this relationship. This cross-sectional study examined five possibilities: stigma preoccupation, internalized homonegativity, sexual orientation concealment, social anxiety, and social inhibition. The study also examined the possible protective role of LGBTQ community involvement. Respondents were 7856 sexual minority adults aged 18–88 years from 85 countries who completed an online survey. Results of structural equation modeling indicated that marginalization was positively associated with both social and emotional loneliness, and that part of this relationship was indirect via proximal minority stress factors (especially stigma preoccupation) and, in turn, social anxiety and social inhibition. Moreover, while LGBTQ community involvement was associated with greater marginalization, it was also associated with lower levels of proximal stress and both forms of loneliness. Among those who were more involved in the LGBTQ community, the associations between marginalization and proximal stress were somewhat weaker, as were those between stigma preoccupation and social anxiety, and between social inhibition and social loneliness. In contrast, the associations between concealment and social anxiety were somewhat stronger. Model fit and patterns of association were similar after controlling for the possible confounding effect of dispositional negative affectivity, but several coefficients were lower. Findings underscore the continuing need to counter marginalization of sexual minorities, both outside and within the LGBTQ community, and suggest possible avenues for alleviating loneliness at the individual level, such as cognitive-behavioral interventions targeting stigma preoccupation and social anxiety.