NGOs, Policy Entrepreneurship and Child Protection in Russia: Pitfalls and Prospects for Civil Society

Non-governmental organizations (NGOs) in contemporary Russia operate within both specific institutional conditions and the frequently contradictory circumstances imposed by a hybrid political regime. Legislation and funding policy at the federal and regional levels veers between restricting and enabling their ability to act and raises questions about the extent to which NGOs can operate independently and participate in the development of a more robust civil society in Russia. In the particular sphere of child protection, which remains very much within the domain of the state, NGOs must cooperate closely with the authorities in order to implement their projects and, whether formally or informally, often become implementers of state social policy as a result. This article explores how NGOs involved in the protection of children living in state institutions interact with state actors in their policy networks and the extent to which such networks may offer these NGOs some scope to act as “policy entrepreneurs” with some degree of influence over the direction of policy development and practice in their area of expertise. It presents the results of empirical research on the activities of NGOs working with vulnerable children in St. Petersburg and Samara, which reveals the interactions between these organizations and the authorities to be a complex, multi-layered process which, nevertheless, allows them some space for autonomy and the development of policy options

Longitudinal Relations Between Parental Writing Support and Preschoolers' Language and Literacy Skills

Parental writing support was examined over time and in relation to children's language and literacy skills. Seventy‐seven parents and their preschoolers were videotaped writing an invitation together twice during one year. Parental writing support was coded at the level of the letter to document parents' graphophonemic support (letter–sound correspondence), print support (letter formation), and demand for precision (expectation for correcting writing errors). Parents primarily relied on only a couple print (i.e., parent writing the letter alone) and graphophonemic (i.e., saying the word as a whole, dictating letters as children write) strategies. Graphophonemic and print support in preschool predicted children's decoding skills, and graphophonemic support also predicted children's future phonological awareness. Neither type of support predicted children's vocabulary scores. Demand for precision occurred infrequently and was unrelated to children's outcomes. Findings demonstrate the importance of parental writing support for augmenting children's literacy skills. 本研究以一段长时间考查家长书写支援与儿童的语言和读写技能之关系。七十七名家长与其学前儿童在一年期间两次共同书写一份邀请书;所有书写过程均被录像。家长书写支援的编码,分三个层面进行:在字母层面上家长给予的字形音素支援(字母与发音的相关性),在书写层面上的支援 (字母的构成)和在精确层面上的要求(纠正书写错误的期待)。家长主要依靠几个支援策略:字母书写策略(家长只写出字母)和字形音素策略(即读出整个单字,然后口授字母,让儿童书写其单字)。家长给予学前儿童的字形音素和书写支援能预测儿童的解码技能;字形音素支援也能预测儿童未来的语音意识。这两种支援却不能预测儿童的词汇成绩。精确度的要求很少出现,与儿童的学习成果并无关联。研究结果说明家长书写支援对增强儿童读写能力的重要性。 Se examinó el apoyo de los padres a la escritura a través del tiempo y en relación a las habilidades de lenguaje y alfabetización de los niños. Setenta y siete padres y sus hijos preescolares fueron captados en video escribiendo una invitación juntos en dos ocasiones durante el año. El apoyo de los padres fue codificado al nivel de la letra para documentar el apoyo grafofonémico de los padres (la correspondencia entre la letra y su sonido), el apoyo letral (la formación de la letra), y la exigencia por la precisión (las expectativas en cuanto a la corrección de errores de escritura). Los padres dependían principalmente en sólo un par de estrategias de letra (por ejemplo: el padre escribiendo la letra solamente) y grafofonémicas (por ejemplo, diciendo la palabra completa, dictando letras mientras los niños escribían). El apoyo grafofonémico y letral en los preescolares predecía la habilidad de los niños de descifrar, y el apoyo grafofonémico también predecía la futura conciencia fonológica de los niños. Ninguna de las dos clases de apoyo pudo predecir la nota de los niños en cuanto a vocabulario. La exigencia por la precisión fue infrecuente y no mostró relación con el resultado de los niños. Los resultados demuestran la importancia del apoyo de los padres en la escritura para incrementar las habilidades alfabetizadoras de los niños. لقد تم فحص دعم الكتابة من قبل الوالدين عبر فترة من الزمن وعلاقته بلغة الأولاد ومهاراتهم في معرفة القراءة والكتابة. وقد تم تصوير فيديوهات لسبع وسبعين والداً ووالدةً وأولادهم ما قبل المدرسة وهم يكتبون دعوة معاً مرتين في سنة. وتم ترميز دعم كتابة الوالدين على مستوى الرسالة لتدوين دعم الخط الصوتي (علاقة الحرف بالصوت)، ودعم الخط (تركيب الحروف)، والطلب على الإتقان (توقع تصحيح أخطاء الكتابة). واعتمد الوالدان على إستراتيجيات معدودة للكتابة (أي يكتب الوالد بنفسه) وللخط الصوتي (أي ينطق الكلمة كوحدة واحدة ويملى الحروف والأولاد يكتبونها). وتنبأ دعم الخط الصوتي والكتابة مهارات الأطفال ما قبل المدرسة في تفكيك الخط وكذلك تنبأ دعم الخط الصوتي الوعي الصوتي المستقبلي لدى الأطفال. ومع ذلك، فلم يتنبؤ لا دعم الكتابة ولا الخط الصوتي علامات امتحانات مفردات الأطفال. ونادراً ما حدث الطلب على الإتقان ولم تتم علاقة بينه وبين نتائج الأولاد. وتبين النتائج أهمية دعم الوالدين للكتابة لتعزيز مهارات الأطفال في معرفة القراءة والكتابة. Пoмoщь poдитeлeй пpи cтaнoвлeнии нaчaльныx нaвыкoв пиcьмa y дeтeй в дaльнeйшeм, кaк выяcняeтcя, влияeт нa языкoвыe нaвыки и гpaмoтнocть дeтeй – этим cвязям и пocвящeнo дaннoe иccлeдoвaниe. Ceмьдecят ceмь poдитeлeй и иx дeти дoшкoльнoгo вoзpacтa, вмecтe пиcaвшиe oткpыткy‐пpиглaшeниe, двaжды в тeчeниe гoдa были cняты нa видeo. Пoмoщь poдитeлeй былa зaдoкyмeнтиpoвaнa пo cлeдyющим пapaмeтpaм: гpaфoфoнeмикa (cooтнoшeниe звyк‐бyквa), гpaфo‐мoтopикa (нaпиcaниe бyкв) и тpeбoвaниe тoчнocти (oжидaниe иcпpaвлeния oшибoк). Poдитeли, в ocнoвнoм, пpимeняли двe cтpaтeгии: гpaфичecкyю (пиcaли бyквy caмocтoятeльнo) и гpaфo‐фoнeмaтичecкyю (пpoизнocили cлoвo цeликoм, зaтeм диктoвaли eгo пo бyквaм, a дeти пиcaли). Гpaфoфoнeмикa и пoмoщь в нaпиcaнии бyкв пpeдoпpeдeляют нaвыки дeтeй дoшкoльнoгo вoзpacтa в дeкoдиpoвaнии peчи, a гpaфoфoнeмикa являeтcя eщe и пpeдиктopoм пocлeдyющeгo фoнoлoгичecкoгo paзвития peбeнкa. Hи oдин из пpaктикyeмыx типoв пoмoщи нe вызвaл pacшиpeния cлoвapнoгo зaпaca дeтeй. Tpeбoвaниe иcпpaвить oшибки вcтpeчaлocь нeчacтo и нe пoвлиялo впocлeдcтвии нa yлyчшeниe кaчecтвa дeтcкoгo пиcьмa. Peзyльтaты дeмoнcтpиpyют вaжнocть poдитeльcкoй пoддepжки пpи cтaнoвлeнии нaвыкoв пиcьмa для coвepшeнcтвoвaния нaвыкoв oпepиpoвaния cлoвoм в цeлoм. Nous avons examiné dans la durée et en relation avec les compétences des enfants en matière de langage et de littératie l'aide qu'apportent les parents à l'écriture des enfants. Nous avons enregistré en vidéo à deux reprises au cours d'une année soixante‐dix sept parents et leurs enfants d'âge préscolaire en train d'écrire ensemble une invitation. L'aide apportée par les parents a été codée au niveau de la lettre afin de distinguer l'aide grapho‐phonétique (correspondances lettres‐son), l'aide au graphisme (formation des lettres), et le degré de précision de leurs exigences (attentes relatives à la correction des erreurs d'écriture). Les parents s'intéressent d'abord seulement au graphisme (par exemple, des parents écrivent eux‐mêmes les lettres) et aux stratégies grapho‐phonétiques (par exemple, ils disent le mot entier ou dictent des lettres pendant que l'enfant écrit). L'aide grapho‐phonétique et au graphisme apportée au niveau préscolaire permet de prédire les compétences en décodage des enfants, et l'aide grapho‐phonétique permet aussi de prédire la conscience phonologique ultérieure. Aucun de ces types d'aide n'est prédictif des résultats en vocabulaire. Les exigences en matière de précision ne sont pas fréquentes et ne sont pas liées aux résultats des enfants. Ces résultats mettent en évidence l'importance qu'a l'aide des parents pour l'amélioration des compétences des enfants en littératie.Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/102675/1/rrq55.pd

Challenges and Opportunities to Updating Prescribing Information for Longstanding Oncology Drugs.

A number of important drugs used to treat cancer-many of which serve as the backbone of modern chemotherapy regimens-have outdated prescribing information in their drug labeling. The Food and Drug Administration is undertaking a pilot project to develop a process and criteria for updating prescribing information for longstanding oncology drugs, based on the breadth of knowledge the cancer community has accumulated with the use of these drugs over time. This article highlights a number of considerations for labeling updates, including selecting priorities for updating; data sources and evidentiary criteria; as well as the risks, challenges, and opportunities for iterative review to ensure prescribing information for oncology drugs remains relevant to current clinical practice

Determinants of the number of mammography units in 31 countries with significant mammography screening

In the 2000s, most of the female population of industrialised countries had access to mammography breast cancer screening, but with variable modalities among the countries. We assessed the number of mammography units (MUs) in 31 European, North American and Asian countries where significant mammography activity has existed for over 10 years, collecting data on the number of such units and of radiologists by contacting institutions in each country likely to provide the relevant information. Around 2004, there were 32 324 MU in 31 countries, the number per million women ranging from less than 25 in Turkey, Denmark, the Netherlands, the United Kingdom, Norway, Poland and Hungary to more than 80 in Cyprus, Italy, France, the United States and Austria. In a multivariate analysis, the number of MUs was positively associated with the number of radiologists (P=0.0081), the number of women (P=0.0023) and somewhat with the country surface area (P=0.077). There is considerable variation in the density of MU across countries and the number of MUs in service are often well above what would be necessary according to local screening recommendations. High number of MUs in some countries may have undesirable consequences, such as unnecessarily high screening frequency and decreased age at which screening is started

Mammography Facility Characteristics Associated With Interpretive Accuracy of Screening Mammography

BackgroundAlthough interpretive performance varies substantially among radiologists, such variation has not been examined among mammography facilities. Understanding sources of facility variation could become a foundation for improving interpretive performance.MethodsIn this cross-sectional study conducted between 1996 and 2002, we surveyed 53 facilities to evaluate associations between facility structure, interpretive process characteristics, and interpretive performance of screening mammography (ie, sensitivity, specificity, positive predictive value [PPV1], and the likelihood of cancer among women who were referred for biopsy [PPV2]). Measures of interpretive performance were ascertained prospectively from mammography interpretations and cancer data collected by the Breast Cancer Surveillance Consortium. Logistic regression and receiver operating characteristic (ROC) curve analyses estimated the association between facility characteristics and mammography interpretive performance or accuracy (area under the ROC curve [AUC]). All P values were two-sided.ResultsOf the 53 eligible facilities, data on 44 could be analyzed. These 44 facilities accounted for 484 463 screening mammograms performed on 237 669 women, of whom 2686 were diagnosed with breast cancer during follow-up. Among the 44 facilities, mean sensitivity was 79.6% (95% confidence interval [CI] = 74.3% to 84.9%), mean specificity was 90.2% (95% CI = 88.3% to 92.0%), mean PPV1 was 4.1% (95% CI = 3.5% to 4.7%), and mean PPV2 was 38.8% (95% CI = 32.6% to 45.0%). The facilities varied statistically significantly in specificity (P < .001), PPV1 (P < .001), and PPV2 (P = .002) but not in sensitivity (P = .99). AUC was higher among facilities that offered screening mammograms alone vs those that offered screening and diagnostic mammograms (0.943 vs 0.911, P = .006), had a breast imaging specialist interpreting mammograms vs not (0.932 vs 0.905, P = .004), did not perform double reading vs independent double reading vs consensus double reading (0.925 vs 0.915 vs 0.887, P = .034), or conducted audit reviews two or more times per year vs annually vs at an unknown frequency (0.929 vs 0.904 vs 0.900, P = .018).ConclusionMammography interpretive performance varies statistically significantly by facility

Patient-Centered Outcomes Measurement: Does It Require Information From Patients?

Purpose: Since collecting outcome measure data from patients can be expensive, time-consuming, and subject to memory and nonresponse bias, we sought to learn whether outcomes important to patients can be obtained from data in the electronic health record (EHR) or health insurance claims. Methods: We previously identified 21 outcomes rated important by patients who had advanced imaging tests for back or abdominal pain. Telephone surveys about experiencing those outcomes 1 year after their test from 321 people consenting to use of their medical record and claims data were compared with audits of the participants’ EHR progress notes over the time period between the imaging test and survey completion. We also compared survey data with algorithmically extracted data from claims files for outcomes for which data might be available from that source. Results: Of the 16 outcomes for which patients’ survey responses were considered to be the best information source, only 2 outcomes for back pain and 3 for abdominal pain had kappa scores above a very modest level of ≥ 0.2 for chart audit of EHR data and none for algorithmically obtained EHR/claims data. Of the other 5 outcomes for which claims data were considered to be the best information source, only 2 outcomes from patient surveys and 3 outcomes from chart audits had kappa scores ≥ 0.2. Conclusions: For the types of outcomes studied here, medical record or claims data do not provide an adequate source of information except for a few outcomes where patient reports may be less accurate

The science of clinical practice: disease diagnosis or patient prognosis? Evidence about "what is likely to happen" should shape clinical practice.

BACKGROUND: Diagnosis is the traditional basis for decision-making in clinical practice. Evidence is often lacking about future benefits and harms of these decisions for patients diagnosed with and without disease. We propose that a model of clinical practice focused on patient prognosis and predicting the likelihood of future outcomes may be more useful. DISCUSSION: Disease diagnosis can provide crucial information for clinical decisions that influence outcome in serious acute illness. However, the central role of diagnosis in clinical practice is challenged by evidence that it does not always benefit patients and that factors other than disease are important in determining patient outcome. The concept of disease as a dichotomous 'yes' or 'no' is challenged by the frequent use of diagnostic indicators with continuous distributions, such as blood sugar, which are better understood as contributing information about the probability of a patient's future outcome. Moreover, many illnesses, such as chronic fatigue, cannot usefully be labelled from a disease-diagnosis perspective. In such cases, a prognostic model provides an alternative framework for clinical practice that extends beyond disease and diagnosis and incorporates a wide range of information to predict future patient outcomes and to guide decisions to improve them. Such information embraces non-disease factors and genetic and other biomarkers which influence outcome. SUMMARY: Patient prognosis can provide the framework for modern clinical practice to integrate information from the expanding biological, social, and clinical database for more effective and efficient care

Methods for the Watch the Spot Trial. A Pragmatic Trial of More- versus Less-Intensive Strategies for Active Surveillance of Small Pulmonary Nodules.

Small pulmonary nodules are most often managed by surveillance imaging with computed tomography (CT) of the chest, but the optimal frequency and duration of surveillance are unknown. The Watch the Spot Trial is a multicenter, pragmatic, comparative-effectiveness trial with cluster randomization by hospital or health system that compares more- versus less-intensive strategies for active surveillance of small pulmonary nodules. The study plans to enroll approximately 35,200 patients with a small pulmonary nodule that is newly detected on chest CT imaging, either incidentally or by screening. Study protocols for more- and less-intensive surveillance were adapted from published guidelines. The primary outcome is the percentage of cancerous nodules that progress beyond American Joint Committee on Cancer seventh edition stage T1a. Secondary outcomes include patient-reported anxiety and emotional distress, nodule-related health care use, radiation exposure, and adherence with the assigned surveillance protocol. Distinctive aspects of the trial include: 1) the pragmatic integration of study procedures into existing clinical workflow; 2) the use of cluster randomization by hospital or health system; 3) the implementation and evaluation of a system-level intervention for protocol-based care; 4) the use of highly efficient, technology-enabled methods to identify and (passively) enroll participants; 5) reliance on data collected as part of routine clinical care, including data from electronic health records and state cancer registries; 6) linkage with state cancer registries for complete ascertainment of the primary study outcome; and 7) intensive engagement with a diverse group of patient and nonpatient stakeholders in the design and execution of the study