Measuring leprosy case detection delay and associated factors in Indonesia:a community-based study

Background: Leprosy is a public health burden in Indonesia with a high number of new cases every year and a high proportion of disability among new cases. Case detection delay (CDD) can contribute to ongoing transmission and increased disability chances among leprosy patients. This study aimed to establish the CDD of leprosy and the factors associated with detection delay in Indonesia. Method: Community-based study with a cross-sectional design. Data were collected through interviews about sociodemographic and behavioral factors, anticipated stigma, and duration of CDD. Leprosy classification and case detection methods were obtained from health service records. A random sample was taken of 126 leprosy patients registered between 1st October 2020 and 31st March 2022 in the Tegal regency in the Central Java Province. Data were analysed by descriptive and analytical statistics using multiple linear regression. Results: The mean CDD, patient delay, and health system delay were 13.0 months, 9.7 months, and 3.2 months, respectively. Factors associated with longer CDD are younger age (below 35 years), male, found through passive case detection, and not having a family member with leprosy. Factors associated with longer patient delay were being younger (below 35 years), being male, not having a family member with leprosy, and anticipated stigma of leprosy. It was not possible to reliably identify factors associated with health system delay. Conclusion: CDD in leprosy should be reduced in Indonesia. The Indonesian National Leprosy Control Program (NLCP) is advised to adopt an integrated intervention programme combining active case detection with targeted health education to reduce CDD and thereby preventing disabilities in people affected by leprosy.</p

The role of acculturation in the process of advance care planning among Chinese immigrants:A narrative systematic review

Background: Acculturation is the process of two different cultures coming into contact. It is unclear how acculturation influences Chinese immigrants’ engagement in advance care planning due to the complexity and multifaceted nature of both acculturation and advance care planning. Aims: To synthesize evidence regarding the role of Chinese immigrants’ acculturation in their engagement in advance care planning. Design: Systematic mixed-method review, registered in PROSPERO (CRD42021231822). Data sources: EMBASE, MEDLINE, Web of Science, and Google Scholar were searched for publications until January 21, 2021. Results: Twenty-one out of 1112 identified articles were included in the analysis. Of those 21 articles, 17 had a qualitative design and 13 originated from the United States. Three of four quantitative studies reported that higher acculturation levels were associated with better knowledge or higher rate of engagement in advance care planning. Analysis of qualitative studies showed that Chinese immigrants’ engagement in advance care planning was associated with their: (1) self-perceived cultural identity (native or non-native); (2) interpretation of filial piety (traditional or modern); and (3) interpretation of autonomy (individual or familial). To facilitate their engagement, Chinese immigrants prefer an implicit approach, non-family-related initiators, contextualization advance care planning in Chinese culture and using Chinese language. Conclusion: Chinese immigrants’ willingness to engage in advance care planning varied with their acculturation level. To engage them in advance care planning, we recommend adapting the introduction of advance care planning to address people’s perceptions of their cultural identity, filial piety, and autonomy, as well as their preference for certain approach, initiator, context, and language.</p

Health-related Quality of Life using the EQ-5D-5L:normative utility scores in a Dutch female population

PURPOSE: Normative utility scores represent the health related quality of life of the general population, are of utmost importance in cost-effectiveness studies and should reflect relevant sexes and age groups. The aim of this study was to estimate EQ-5D-5L normative utility scores in a population of Dutch females, stratified by age, and to compare these scores to those of female populations of three other countries. METHODS: Dutch women completed the EQ-5D-5L online between January and July 2020. Mean normative utilities were computed using the Dutch EQ-5D-5L value set, stratified by age, tested for differences using the Kruskall–Wallis test, and compared to normative utility scores of female populations elsewhere. Additionally, to support the use of the Dutch EQ-5D-5L data in other settings, normative utility scores were also calculated by applying the value sets of Germany, United Kingdom and USA. RESULTS: Data of 9037 women were analyzed and the weighted mean utility score was 0.911 (SD 0.155, 95% CI 0.908–0.914). The mean normative utility scores differed between age groups, showing lower scores in older females. Compared to other normative utility scores of female populations, Dutch mean utilities were consistently higher except for age groups 18–24 and 25–34. With the three country-specific value sets, new age-specific mean normative utility scores were provided. CONCLUSION: This study provides mean normative utility scores of a large cohort of Dutch females per age group, which were found to be lower in older age groups. Utility scores calculated with three other value sets were made available. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s11136-022-03271-3

How Does Active Surveillance for Prostate Cancer Affect Quality of Life?:A Systematic Review

The optimal management of screen-detected, localised prostate cancer remains controversial, related to overtreatment issues of screening and the nonrandomised evidence base. Active surveillance (AS) aims to delay or avoid curative therapy but may potentially harm patients' well-being through living with untreated prostate cancer

Prostate cancer-specific anxiety in Dutch patients on active surveillance: validation of the memorial anxiety scale for prostate cancer

Purpose: Men with prostate cancer (PC) may show specific disease-related anxiety. We evaluated the psychometric properties of the Dutch adaptation of the Memorial Anxiety Scale for Prostate Cancer (MAX-PC). Methods: The MAX-PC was translated using standardized forward-backward procedures. Patients (N = 150) on active surveillance, a strategy of initially withholding active therapy, for recently diagnosed early PC were mailed a questionnaire. Internal consistency was estimated using Cronbach's alpha. The scale structure was analyzed using confirmatory factor analysis (CFA). Construct validity was evaluated by Pearson's correlations between MAX-PC scores and scores on decisional conflict (DCS), generic anxiety (STAI), depression (CES-D), and general mental health (SF-12 MCS). Results: Data from 129 respondents were used (response rate 86%). Cronbach's alpha for the total score and the three subscales were 0.77, 0.91, 0.64, and 0.85, respectively. CFA largely confirmed the three-factor structure as used in the original publication (model fit: χ2 149, P = 0.051). The patterns of directions and sizes of the correlations (r = 0.36-0.66) between MAX-PC scale scores and the other variables were in accordance with a priori hypotheses, except for the prostate-specific antigen anxiety subscale. The relatively poor performance of this scale in the original version was replicated. Conclusions: The structure and validity of the MAX-PC to quantify PC-specific anxiety were largely confirmed in Dutch patients

Recognising the importance of 'family time-out' in consultations: An exploratory qualitative study

Objectives: Patients are often accompanied by family or companions during consultations, but little is known about how this might influence the process. We explored how the presence of a companion in a consultation contributes to communication and the decision-making process. Design: Observational study. Setting: A teaching hospital and a district general hospital in south-west England. Participants: 31 patients and their physicians were observed during consultations in which decisions to undergo palliative chemotherapy were made. Each patient was accompanied by at least one companion. Outcome measures: Communication patterns between physicians, patients and companions. Results: In addition to standard patient/physician interactions, patients and companions were often found to discuss medical information and exchange opinions between themselves without the physician actively participating. We called these instances 'family timeout'. On the occasion of disagreement between patients and companions about preferred treatment options, physicians and patients were able to agree the decision while acknowledging the differences in opinion. Conclusions: Instances of 'family time-out' may contribute to better consultation outcomes because they are understood and supported by the patient's social system. This study highlights the potentially important role of exchanges between patients and companions during consultations and how physicians may benefit from observation of such exchanges. We recommend testing the value of making space for family time-out during consultations. Also, we recommend further study into the medical ethics of family time-out. While the focus here is on palliative chemotherapy, this finding has implications for other consultations, particularly those involving difficult treatment decisions

Response shift due to diagnosis and primary treatment of localized prostate cancer: a then-test and a vignette study

Aim Whether a prostate cancer diagnosis induces response shift has not been established so far. Therefore, we assessed response shift in men who were diagnosed with localized prostate cancer. Patients and methods Out of 3,892 men who completed a questionnaire before screening, 82 were subsequently diagnosed with prostate cancer. Response shift was assessed in 52 (response 63%) by the then-test (EuroQol self-rating of health, Short-Form 36 mental health and vitality) and a novel method: rating of vignettes relating to side effects of prostate cancer treatment (urinary, bowel and erectile dysfunction). Three then-tests were conducted: two referencing pre-diagnosis (measured pre

Developing core outcomes sets: methods for identifying and including patient-reported outcomes (PROs)

BACKGROUND: Synthesis of patient-reported outcome (PRO) data is hindered by the range of available PRO measures (PROMs) composed of multiple scales and single items with differing terminology and content. The use of core outcome sets, an agreed minimum set of outcomes to be measured and reported in all trials of a specific condition, may improve this issue but methods to select core PRO domains from the many available PROMs are lacking. This study examines existing PROMs and describes methods to identify health domains to inform the development of a core outcome set, illustrated with an example. METHODS: Systematic literature searches identified validated PROMs from studies evaluating radical treatment for oesophageal cancer. PROM scale/single item names were recorded verbatim and the frequency of similar names/scales documented. PROM contents (scale components/single items) were examined for conceptual meaning by an expert clinician and methodologist and categorised into health domains. A patient advocate independently checked this categorisation. RESULTS: Searches identified 21 generic and disease-specific PROMs containing 116 scales and 32 single items with 94 different verbatim names. Identical names for scales were repeatedly used (for example, ‘physical function’ in six different measures) and others were similar (overlapping face validity) although component items were not always comparable. Based on methodological, clinical and patient expertise, 606 individual items were categorised into 32 health domains. CONCLUSION: This study outlines a methodology for identifying candidate PRO domains from existing PROMs to inform a core outcome set to use in clinical trials