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1.

Purpose

Debilitating fatigue is a core symptom of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS); however, the utility of patient-reported symptom outcome measures of fatigue for ME/CFS patients is problematic due to ceiling effects and issues with reliability and validity. We sought to evaluate the performance of three patient-reported symptom measures in a sample of ME/CFS patients and matched controls.

Methods

Two hundred and forty ME/CFS patients and 88 age, sex, race, and zip code matched controls participated in the study. Participants completed the Multidimensional Fatigue Inventory-20, DePaul Symptom Questionnaire, and RAND SF-36.

Results

The general and physical fatigue subscales on Multidimensional Fatigue Inventory-20, as well as the role of physical health on the RAND SF-36, demonstrated questionable or unacceptable internal consistency and problematic ceiling effects. The DePaul Symptom Questionnaire demonstrated excellent internal reliability, and less than 5 % of participants were at the ceiling on each subscale. The post-exertional malaise subscale on the DePaul Symptom Questionnaire demonstrated excellent clinical utility as it was able to differentiate between ME/CFS patients and controls (OR 1.23, p < .001) and predicted ceiling effects on other patient-reported outcome subscales. A score of 20 on the post-exertional malaise subscale of the DePaul Symptom Questionnaire optimally differentiated between patients and controls.

Conclusions

Significant ceiling effects and concerns with reliability and validity were observed among Multidimensional Fatigue Inventory-20 and RAND SF-36 subscales for ME/CFS patients. The DePaul Symptom Questionnaire addresses a number of concerns typically identified when using patient-reported outcome measures with ME/CFS patients; however, an improved multidimensional patient-reported outcome tool for measuring ME/CFS-related symptoms is warranted.
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2.

Purpose

In chronic fatigue syndrome (CFS), the lack of consensus on how recovery should be defined or interpreted has generated controversy and confusion. The purpose of this paper was to systematically review, compare, and evaluate the definitions of recovery reported in the CFS literature and to make recommendations about the scope of recovery assessments.

Methods

A search was done using the MEDLINE, PubMed, PsycINFO, CINAHL, and Cochrane databases for peer review papers that contained the search terms “chronic fatigue syndrome” and “recovery,” “reversal,” “remission,” and/or “treatment response.”

Results

From the 22 extracted studies, recovery was operationally defined by reference with one or more of these domains: (1) pre-morbid functioning; (2) both fatigue and function; (3) fatigue (or related symptoms) alone; (4) function alone; and/or (5) brief global assessment. Almost all of the studies measuring recovery in CFS did so differently. The brief global assessment was the most common outcome measure used to define recovery. Estimates of recovery ranged from 0 to 66 % in intervention studies and 2.6 to 62 % in naturalistic studies.

Conclusions

Given that the term “recovery” was often based on limited assessments and less than full restoration of health, other more precise and accurate labels (e.g., clinically significant improvement) may be more appropriate and informative. In keeping with common understandings of the term recovery, we recommend a consistent definition that captures a broad-based return to health with assessments of both fatigue and function as well as the patient’s perceptions of his/her recovery status.  相似文献   

3.
Although myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) are considered to be synonymous, the definitional criteria for ME and CFS define two distinct, partially overlapping, clinical entities. ME, whether defined by the original criteria or by the recently proposed criteria, is not equivalent to CFS, let alone a severe variant of incapacitating chronic fatigue. Distinctive features of ME are: muscle weakness and easy muscle fatigability, cognitive impairment, circulatory deficits, a marked variability of the symptoms in presence and severity, but above all, post-exertional “malaise”: a (delayed) prolonged aggravation of symptoms after a minor exertion. In contrast, CFS is primarily defined by (unexplained) chronic fatigue, which should be accompanied by four out of a list of 8 symptoms, e.g., headaches. Due to the subjective nature of several symptoms of ME and CFS, researchers and clinicians have questioned the physiological origin of these symptoms and qualified ME and CFS as functional somatic syndromes. However, various characteristic symptoms, e.g., post-exertional “malaise” and muscle weakness, can be assessed objectively using well-accepted methods, e.g., cardiopulmonary exercise tests and cognitive tests. The objective measures acquired by these methods should be used to accurately diagnose patients, to evaluate the severity and impact of the illness objectively and to assess the positive and negative effects of proposed therapies impartially.  相似文献   

4.

Purpose

The purpose of this study was to conduct a longitudinal examination of cognitive complaints and functional status in patients with chronic fatigue syndrome (CFS) alone and those who also had fibromyalgia (CFS/FM).

Methods

A total of 93 patients from a tertiary care fatigue clinic were evaluated on four occasions, each 6 months apart. Each evaluation included a tender point assessment, and self-reported functional status and cognitive complaints.

Results

Patients with CFS/FM reported significantly worse physical functioning, more bodily pain, and more cognitive difficulties (visuo-perceptual ability and verbal memory) than patients with CFS alone. Over time, bodily pain decreased only for participants with CFS alone. Verbal memory problems were associated with more bodily pain for both patient groups, whereas visuo-perceptual problems were associated with worse functional status for patients with CFS alone.

Conclusions

This study adds to the literature on functional status, longitudinal course, and cognitive difficulties among patients with CFS and those with CFS and FM. The results suggest that patients with CFS/FM are more disabled, have more cognitive complaints, and improve more slowly over time than patients with CFS alone. Specific cognitive difficulties are related to worse functional status, which supports the addition of cognitive difficulties to the FM case criteria.
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5.

Background

Needs-based resource allocation is fundamental to equitable care provision, which can meet the often-complex, fluctuating needs of people with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME). This has posed challenges both for those providing and those seeking support providers, in building shared understanding of the condition and of actions to address it. This qualitative study reports on needs for equity in health and social care expressed by adults living with CFS/ME.

Methods

The participants were 35 adults with CFS/ME in England, purposively selected to provide variation in clinical presentations, social backgrounds and illness experiences. Accounts of experienced needs and needs-related encounters with health and social services were obtained through a focus group (n = 6) and semi-structured interviews (n = 35). These were transcribed and needs related topics identified through data-led thematic analysis.

Findings

Participants emphasised needs for personalised, timely and sustained support to alleviate CFS/ME impacts and regain life control, in three thematic areas: (1) Illness symptoms, functional limitations and illness management; (2) practical support and social care; (3) financial support. Access of people with CFS/ME to support from health and social services was seen to be constrained by barriers stemming from social, cultural, organisational and professional norms and practices, further heightened for disadvantaged groups including some ethnic minorities. These reduced opportunities for their illness to be explained or associated functional limitations and social disadvantages to be addressed through social support. Participants sought more understanding of bio-psycho-social aspects of CFS/ME, of felt needs of people with CFS/ME and of human rights and disability rights, for providing person-centred, equitable care.

Conclusions

Changes in attitudes of health practitioners, policy makers and general public and more flexibly organised health and social care provision are needed to address equity issues in support needs expressed by people with CFS/ME, to be underpinned by research-based knowledge and communication, for public and professional education. Policy development should include shared decision-making and coordinated action across organizations working for people with CFS/ME, human rights and disadvantaged groups. Experiences of people with CFS/ME can usefully inform an understanding of equity in their health and social care.  相似文献   

6.

Background

Chronic fatigue syndrome (CFS) is defined by symptoms and disability, has no confirmatory physical signs or characteristic laboratory abnormalities, and the etiology and pathophysiology remain unknown. Difficulties with accurate case ascertainment contribute to this ignorance.

Methods

Experienced investigators from around the world who are involved in CFS research met for a series of three day workshops in 2000, 2001 and 2002 intended to identify the problems in application of the current CFS case definition. The investigators were divided into focus groups and each group was charged with a topic. The investigators in each focus group relied on their own clinical and scientific knowledge, brainstorming within each group and with all investigators when focus group summaries were presented. Relevant literature was selected and reviewed independent of the workshops. The relevant literature was circulated via list-serves and resolved as being relevant by group consensus. Focus group reports were analyzed and compiled into the recommendations presented here.

Results

Ambiguities in the current CFS research definition that contribute to inconsistent case identification were identified. Recommendations for use of the definition, standardization of classification instruments and study design issues are presented that are intended to improve the precision of case ascertainment. The International CFS Study Group also identified ambiguities associated with exclusionary and comorbid conditions and reviewed the standardized, internationally applicable instruments used to measure symptoms, fatigue intensity and associated disability.

Conclusion

This paper provides an approach to guide systematic, and hopefully reproducible, application of the current case definition, so that case ascertainment would be more uniform across sites. Ultimately, an operational CFS case definition will need to be based on empirical studies designed to delineate the possibly distinct biological pathways that result in chronic fatigue.  相似文献   

7.

Objective and method

An increased percentage of German schoolteachers suffers from psychosomatic symptoms. In 2002/2003 a federation of Bavarian schoolteachers conducted 1-day health retreats for teachers. Socio-demographic data, subjective levels of workload, burn-out and motivation to change individual health behaviour (transtheoretical model) were recorded.

Results

Two-thirds of 639 participants reported elevated severe occupational stress, and about 20% felt “burn-out”; 40% fulfilled the criteria for an early stage of motivation (“preparation”) and less than 20% a more advanced motivational stage (“action”).

Conclusion

In terms of changes in health behaviour, 1-day health retreats for teachers attracted an interested (70%) but little advanced target group. The results suggest that specific preventive interventions be tailored to individual stress experiences and motivational stages. Content-related, methodological and political implications are discussed.  相似文献   

8.

Purpose

An accommodative coping style (e.g. acceptance) is related to a better mental health-related quality of life (MHQL) in patients with chronic fatigue syndrome (CFS). We want to explore whether neuroticism is predictive for this coping style and MHQL. Secondly we want to explore the relation between acceptance and physical health-related quality of life (PHQL) and expect that illness-related variables such as fatigue severity and duration are related to PHQL.

Method

In this cross-sectional study, 117 patients with chronic fatigue syndrome from an outpatient internal medicine clinic completed self-report questionnaires on quality of life (SF-36), acceptance (ICQ), personality traits (NEO-FFI) and fatigue severity (CIS).

Results

Regression analyses showed that neuroticism and acceptance are predictors of MHQL (38% of the variance was explained). The path analysis showed that acceptance mediates between neuroticism and MHQL and that PHQL is related to MHQL. PHQL is related to fatigue severity and duration, but not to neuroticism and acceptance.

Conclusion

Stimulating an ??accepting accommodative coping style?? within the treatment for CFS is important in improving mental quality of life. Our results suggest that neuroticism may be negatively related to acceptance and MHQL. This findings support the idea that a psychological diagnostic workout with special attention to personality traits in relation to their coping style is recommended in order to choose the most appropriate therapeutic approach in this population.  相似文献   

9.

Objective

To assess whether CFS‐like caseness (meeting the criteria for chronic fatigue syndrome (CFS)) predicts work status in the long term.

Methods

Prospective study in a sample of fatigued employees absent from work. Data were collected at baseline and four years later, and included CFS‐like caseness and work status (inactive work status and full work incapacity).

Results

CFS‐like cases at baseline were three times more likely to be unable to work at follow up than fatigued employees who did not meet CFS criteria at baseline (ORs 3–3.3). These associations grew even stronger when demographic and clinical confounders were controlled for (ORs 3.4–4.4).

Conclusion

A CFS‐like status (compared to non‐CFS fatigue) proved to be a strong predictor of an inactive work status and full work incapacity in the long term. Since little is known about effective interventions that prevent absenteeism and work incapacity or facilitate return to work in subjects with chronic fatigue, there is a great need for powerful early interventions that restore or preserve the ability to work, especially for workers who meet criteria for CFS.  相似文献   

10.

Background

This study aims to evaluate variation in somatic symptoms by age using patient health questionnaire-9 (PHQ) depression scores, which may be helpful in identifying depression.

Methods

The study evaluated a nationally representative cross-sectional sample of community-dwelling adults in Japan in 2013. We utilized the PHQ to identify risk for depression, with PHQ?≥?10 defining at least moderate depression. Bivariate and factor analyses were used to capture underlying patterns in self-reported symptoms over a 30?day period; aged-stratified multivariate logistic regression was performed to further explore associations between age, symptoms, and depression.

Results

Of 3753 respondents, 296 (8, 95% CI 7.0–8.8) reported a PHQ?≥?10; 42% of these were male and mean age was 51.7?years old (SD?=?18.6). Multivariate analysis showed that presence of fatigue and malaise (OR?=?1.7, 95% CI 1.3–2.4) was significantly associated with PHQ?≥?10. After stratification by age, PHQ?≥?10 was associated with gastrointestinal complaints among 18–39?year olds (OR?=?1.7, 95% CI 1.0–2.9); fatigue and malaise (OR?=?1.8, 95% CI 1.1–3.1) among 40–64?year olds; and fatigue and malaise (OR?=?1.8, 95% CI 1.1–3.0) as well as extremity pain (OR?=?1.7, 95% CI 1.0–2.8) in over 65?year olds.

Conclusion

Age-related somatic symptom correlates of PHQ?≥?10 differ across the lifespan. Predominantly gastrointestinal symptoms in younger patients, and generalized fatigue, malaise, and musculoskeletal pain in older groups were observed. In order for screening physicians to proactively identify depression, awareness of age-related somatic symptoms is warranted.
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11.

Objectives

The purpose of this study was to analyse the extent to which breast cancer patients excuse inconveniences that occur during their hospitalisation, and how this “tendency to excuse” affects their satisfaction with the hospital stay.

Methods

Breast cancer patients undergoing treatment at one of 51 breast centres in North Rhine-Westphalia (Germany) in 2009 were asked to complete the Cologne Patient Questionnaire-Breast Cancer (CPQ-BC). For the analyses, the “tendency to excuse” scale was subdivided into three groups. Linear regressions were performed to investigate associations between the “tendency to excuse” and patient satisfaction.

Results

88 % (3,950) of the patients completed the questionnaire. The results show that the inpatients excused inconsistencies to a moderate degree. The “excusers” and “non-excusers” showed greater satisfaction with hospital services than the “medium-excusers”.

Conclusions

The “tendency to excuse” scale could aid future data analysis of patient satisfaction surveys by identifying patients who are more likely to answer in an unbiased fashion. According to hospital survey outcomes, adjusting for the “tendency to excuse” scale however, does not lead to substantially different results when comparing health care providers.  相似文献   

12.
13.

Purpose

To estimate the association of chronic non-urologic conditions [i.e., fibromyalgia (FM), chronic fatigue syndrome (CFS), and irritable bowel syndrome (IBS)] with health-related quality of life (HRQOL) in patients with interstitial cystitis/bladder pain syndrome (IC/BPS).

Methods

A total of 276 women with established diagnoses of IC/BPS completed a telephone interview which included demographics, self-reported medical conditions, the SF-36 health survey, and the interstitial cystitis symptom index (ICSI). Multivariate linear regression analysis was used to identify correlates of SF-36 physical and mental component summary scores.

Results

Mean patient age was 45.1 (SD 15.9) years, and 83 % of the subjects were white. Mean values for the SF-36 Physical Component Score (PCS) and Mental Component Score (MCS) means were 39 (SD 14) and 45 (SD 12), respectively, indicating significant HRQOL reductions. Mean ICSI score was 11.27 (SD = 4.86). FM and IBS were significantly associated with worse SF-36 scores: ?8 points on the PCS (p < 0.001) and ?6 points on the MCS (p < 0.001). CFS and the presence of other pelvic conditions (overactive bladder, vulvodynia, endometriosis) were not significantly associated with SF-36 PCS and MCS scores.

Conclusions

In patients with IC/BPS, the presence of FM, CFS, and IBS has a significant association with HRQOL, equivalent in impact to the bladder symptoms themselves. These results emphasize the importance of a multidisciplinary approach to treating patients with IC/BPS and other conditions.  相似文献   

14.

Purpose

Depression rating scales have predicted long-term sickness absence (LTSA) in previous studies. With this study, we investigated to what extent single symptoms from a depression rating scale predicted LTSA among employees who were free of clinical depression.

Methods

We studied 6,670 female employees in the Danish eldercare sector. Frequency of 12 depressive symptoms over the last 2 weeks was assessed with the Major Depression Inventory. A symptom was considered as elevated if it was present at least “slightly more than half of the time.” Data were linked to a national register on LTSA (≥3 weeks). We calculated hazard ratios (HR) from Cox’s proportional hazard models to analyze whether a symptom predicted time to onset of LTSA during a 1-year follow-up. Analyses were adjusted for age, family status, health behaviors, occupational group, and previous LTSA.

Results

Of the 12 symptoms, three predicted LTSA after adjustment for covariates: “felt low in spirits and sad” (HR = 1.41, 95 % CI = 1.05–1.89), “felt lacking in energy and strength” (HR = 1.33, 95 % CI = 1.08–1.64), and “had trouble sleeping at night” (HR = 1.38, 95 % CI = 1.09–1.74).

Conclusion

Among female eldercare workers free of clinical depression, feelings of low spirits and sadness, feelings of lack of energy and strength, and sleep disturbances predict risk of LTSA. Interventions that decrease the prevalence of these symptoms might contribute to a reduction in LTSA in this population.  相似文献   

15.

Purpose

This study used an empirical approach to identify and validate the classification of patients with schizophrenia in “good,” “moderate,” or “poor” functioning groups based on the assessment of functional measures.

Methods

Using data from a study of schizophrenia outpatients, patients were classified into functional groups using cluster analysis based on the Heinrich–Carpenter Quality of Life Scale (QLS), the 36-item Short-Form Health Survey (SF-36) Mental Component Summary Score, and a productivity measure. A three-cluster solution was chosen. Concurrent, convergent, and discriminant validity were assessed. Criteria for classifying patient functioning as “good,” “moderate,” or “poor” were established using classification and regression tree analysis.

Results

The three clusters consistently differentiated patients on the QLS, SF-36 Mental Component Summary Score, and productivity measure. The clusters also differed on other functional measures and were concordant with previous functional classifications. Concurrent, convergent, and discriminant validity were good. “Good” functioning was identified as a QLS total score ≥84.5; “moderate” and “poor” functioning were separated by a cutoff score of 15.5 on the QLS intrapsychic foundation domain. Sensitivity ranged from 86 to 93 % and specificity from 89 to 99 %.

Conclusions

The heterogeneity in functioning of schizophrenia patients can be classified reliably in an empirical manner using specific cutoff scores on commonly used functional measures.  相似文献   

16.

Objective

Fatigue is one of the most prevalent and significant symptoms experienced by breast cancer patients. This study aimed to investigate potential population heterogeneity in fatigue symptoms of the patients using the innovative non-normal mixture modeling.

Methods

A sample of 197 breast cancer patients completed the brief fatigue inventory and other measures on cancer symptoms. Non-normal factor mixture models were analyzed and compared using the normal, t, skew-normal, and skew-t distributions. Selection of the number of latent classes was based on the Bayesian information criterion (BIC). The identified classes were validated by comparing their demographic profiles, clinical characteristics, and cancer symptoms using a stepwise distal outcome approach.

Results

The observed fatigue items displayed slight skewness but evident negative kurtosis. Factor mixture models using the normal distribution pointed to a 3-class solution. The t distribution mixture models showed the lowest BIC for the 2-class model. The restored class (52.5 %) exhibited moderate severity (item mean = 2.8–3.2) and low interference (item mean = 1.1–1.9). The exhausted class (47.5 %) displayed high levels of fatigue severity and interference (item mean = 5.8–6.6). Compared to the restored class, the exhausted class reported significantly higher perceived stress, anxiety, depression, pain, sleep disturbance, and lower quality of life.

Conclusions

The non-normal factor mixture models suggest two distinct subgroups of patients on their fatigue symptoms. The presence of the exhausted class with exacerbated symptoms calls for a proactive assessment of the symptoms and development of tailored interventions for this subgroup.  相似文献   

17.

Background

Prospective studies on bystanding to workplace bullying and the health outcomes are scarce.

Aim

To investigate the work environmental risk factors of depressive symptoms among bystanders to bullying in both women and men in four large industrial organizations in Sweden.

Method

The number of respondents at four large industrial enterprises with more than one year at the workplace at T1: n = 2,563 (Women: n = 342; Men: n = 2,227). Bystanders to bullying at T1: n = 305 (Women: n = 30; Men: n = 275). The total number of those with symptoms of depression at T2: Women: n = 30; Men: n = 161. Two thousand one hundred and seventy-seven employees answered the questionnaire on T1 and T2 with an 18-month interval. “To have depressive symptoms” was defined as not having depressive symptoms at T1 but having depressive symptoms at T2.

Results

The number of men who were bystanders to bullying was larger compared to women. However, the proportion of women who were bystanders to bullying and developed depressive symptoms 18 months later was higher in comparison with men (33.3 and 16.4 %, respectively). Further, “Being a bystander to bullying” 1.69 (1.13–2.53), “Rumors of changes in the workplace” 1.53 (1.10–2.14), “Reduced role clarity” 2.30 (1.21–4.32), “Lack of appreciation of being in the group” 1.76 (1.22–2.53) increased the risk of future symptoms of depression. “Job Strain” was not an adjusted risk factor for depression.

Conclusion

Our results support previous findings that bystanding to workplace bullying is related to future depressive symptoms.  相似文献   

18.

Objectives

Diagnostic patterns play a role in asthma prevalence estimates and could have implications for disease management. We sought to determine the extent to which questionnaire-derived estimates of childhood asthma reflect the disease’s true occurrence.

Materials and Methods

Children aged 6–12 years from Katowice, Poland, were recruited from a cross-sectional survey (N = 1822) via primary schools. Students were categorized into three mutually exclusive groups based on survey responses: “Asthma” (previously diagnosed asthma); “Respiratory symptoms” (no previous diagnosis of asthma and one or more respiratory symptoms during last year), “No respiratory symptoms” (no previous diagnosis of asthma or respiratory symptoms). A sample of children from each group (total N = 456) completed clinical testing to determine asthma presence according to GINA recommendations.

Results

Based on the survey, 5.4% of children were classified with asthma, 27.9% with respiratory symptoms, and 66.7% with no respiratory symptoms or asthma. All previously known 41 cases of asthma were confirmed. New diagnoses of asthma were made in 21 (10.9%) and 8 (3.6%) of subjects from the “Respiratory symptoms” (N = 192) and “No respiratory symptoms” (N = 223) groups, respectively. The overall prevalence of childhood asthma, incorporating the results of clinical examination, was 10.8% (95% CI: 9.4–12.2), compared to the questionnaire-derived figure of 5.4% (95% CI: 4.4–6.5%) and affected females more than males.

Conclusions

Asthma prevalence was underestimated in this population possibly resulting from under-presentation or under-diagnosis. This could have potential implications for proper management and well-being of children. Questionnaire estimates of prevalence should be considered carefully in the context of regional diagnostic patterns.  相似文献   

19.

Objectives

The Quick Environment Exposure Sensitivity Inventory (QEESI©) has been used as a questionnaire to evaluate subjective symptoms of patients with multiple chemical sensitivity (MCS), also known as idiopathic environmental intolerance, in Japan. However, no cutoff value for Japanese subjects has yet been established. We designed this study to establish a cutoff value for Japanese subjects using QEESI© for screening of MCS patients.

Methods

A questionnaire using the QEESI© was administered to 103 MCS patients and 309 healthy control subjects matched for age and sex. QEESI© scores of the two groups were compared using logistic regression analysis, receiver operating characteristic analysis, and the Mann–Whitney test.

Results

Cutoff values for Japanese subjects were determined for the Chemical Intolerance subscale (40), Symptom Severity subscale (20), and Life Impact subscale (10). The subjects whose scores exceeded the cutoff values in any two subscales accounted for 88.4% of the patients but only 14.5% of the controls.

Conclusions

Our results suggest that subjects meeting two out of three subscale criteria can be screened as “patients suffering from a low level of environmental chemicals such as MCS” in Japan.  相似文献   

20.

Background

Socially disadvantaged mothers and parents show the highest prevalence of health problems and diseases. This is also true for their children. For this reason, the success of prevention programs can only be achieved with the involvement of parents.

Aims

Mothers and fathers with low socio-economic status cannot be successfully addressed with the strategies known so far. The article analyzes how parent education programs can be integrated into the “settings” kindergarten, school and youth and family support services in order to be accessible to families from all social classes.

Results

Using the example of three well-established parent training programs (“Lions-Quest”, “STEP” and “U-Boot”) the article demonstrates how the integration into settings can most efficiently be managed. Using the example of the parent training program STEP, it can be shown that an embedding of the programme in settings makes it easier to attract mothers and fathers from disadvantaged backgrounds.  相似文献   

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