Health-related quality of life (hrQoL) among patients with primary cicatricial alopecia (PCA): A systematic review.

Cicatricial alopecia may lead to an enormous emotional burden, social distress, and psychological impairment affecting the quality of life. The objective of this review is to systematically describe the health-related quality of life in adults with primary cicatricial alopecia and its subtypes. Studies that (i) reported quality of life in patients with primary cicatricial alopecia or its subtypes; (ii) were original research and not a conference abstract or review (iii) with patients >18 years of age were included in the review. The studies not mentioning quality of life specifically for the cicatricial alopecia cohort were excluded. We searched for literature via OVID in Medline and Embase, in Web of Science, CINAHL, EBSCO (APA PsycArticles, APA PsycInfo, and PSYNDEX Literature), in the Cochrane Library and for grey literature from its inception date till 12 November 2022. The risk of bias was assessed by using the AXIS tool for cross-sectional studies by two independent authors. Thirteen observational cross-sectional and one single-arm study, including 572 patients and eight different instruments, fulfilled the inclusion criteria. Results are descriptively synthesized, and associated factors of quality of life are presented. The data from studies that used the Dermatology Life Quality Index tool (DLQI) showed that more than 70% of the patients have an impaired life quality. While trichodynia and anxiety have a negative effect on the quality of life, disease duration, education, employment, and marital status have no effect. The findings were inconsistent for other factors. Most of these studies failed to justify the sample size. Furthermore, the risk of bias assessment could not surely rule out a non-response bias. Our results suggest that cicatricial alopecia treatments must be integrated with psychosocial intervention and indicate the need for further research with homogenous and more comprehensive tools to identify and address this patient population's unmet mental health needs.

Quality of life in children and adolescents with alopecia areata-A systematic review.

Alopecia areata (AA) is an autoimmune-mediated non-scarring hair loss whose stigmatizing effect may have a severe psychosocial impact. AA has been reported to be correlated with bullying, reduced quality of life (QoL) and psychiatric comorbidities. The effect of AA on QoL in adult patients has been systematically reviewed and found to be detrimental. No systematic evaluation of QoL in children with AA has been performed. The aim of this review is to systematically describe QoL in the child and adolescent population affected by AA. A systematic review of multiple databases and grey literature sources was conducted. Search terms included, but were not limited to, alopecia areata and quality of life. Only studies reporting results on health-related QoL in children and adolescents were included. We evaluated the studies regarding the risk of bias, and conceptual rigour concerning the quality of life and performed a descriptive synthesis of findings. Eight studies met the inclusion criteria, encompassing 358 participants with AA and 64 healthy peers. Seven studies were quantitative using four different standardized questionnaires and scores to measure QoL. One study used a qualitative design. All studies described impairment of children and adolescents' QoL by AA. The most consistently affected QoL domain was embarrassment and self-consciousness. Further psychosocial implications of AA included bullying and limiting participation in school or spare time activities. Existing evidence indicates a substantial impact of AA on QoL in children. In daily clinical practice as well as for developing new treatments QoL in paediatric AA plays a critical role. It should be considered a key outcome in clinical research and decision-making.

Skin Care in Neonates and Infants: A Scoping Review.

BACKGROUND: Skin care is a basic, daily activity performed by formal and informal caregivers from birth until end of life. Skin care activities are influenced by different factors, e.g., culture, knowledge, industrial developments and marketing activities. Therefore, various preferences, traditions, and behaviors exist worldwide including skin care of neonates and infants. The objective of this scoping review was to obtain an overview about the evidence of skin care activities in neonates and infants. Studies from 2010 were eligible if the population was (skin) healthy neonates and infants; if the concept was skin care interventions; and if the context was at home, in a community setting, in a pediatric outpatient service, or in a hospital. We searched for the literature via OVID in MEDLINE and Embase, in the Cochrane Library, in trial registries and for gray literature. SUMMARY: We identified 42 studies since 2010, which examined four main skin care interventions: bathing, wiping, washing, and topical application of leave-on products. Details of interventions were often not reported, and if they were, they were not comparable. The four skin care interventions focused on 13 different care goals, mainly prevention of skin diseases, maintaining skin barrier function, and improving (skin) health. We evaluated effects of skin care interventions using 57 different outcome domains; 39 of 57 were skin-related and 18 were not. Mostly, laboratory or instrumental measurements were used. KEY MESSAGES: Our scoping review identified four skin care interventions with a broad heterogeneity of product categories and application details. Studies in skin care interventions should include all relevant information about product category and application details to ensure comparability of study results. This would be helpful in developing recommendations for formal and informal caregivers. We identified 13 skin care goals. "Maintaining healthy skin/skin barrier function/skin barrier integrity," "prevention of atopic dermatitis," "cleansing," and "improving skin barrier function" were most often allocated to skin care interventions. There is substantial variability regarding outcome domains in skin care research. Our results support the need of developing core outcome sets in the field of skin care in healthy skin, especially in this age-group of neonates and infants.

Management of Germ Cell Tumours of the Testes in Adult Patients: German Clinical Practice Guideline, PART II - Recommendations for the Treatment of Advanced, Recurrent, and Refractory Disease and Extragonadal and Sex Cord/Stromal Tumours and for the Management of Follow-Up, Toxicity, Quality of Life, Palliative Care, and Supportive Therapy.

OBJECTIVES: We developed the first German evidence- and consensus-based clinical guideline on diagnosis, treatment, and follow-up of germ cell tumours (GCT) of the testes in adult patients. We present the guideline content in 2 separate publications. The present second part summarizes therecommendations for the treatment of advanced disease stages and for the management of follow-up and late effects. MATERIALS AND METHODS: An interdisciplinary panel of 42 experts including 1 patient representative developed the guideline content. Clinical recommendations and statements were based on scientific evidence and expert consensus. For this purpose, evidence tables for several review questions, which were based on systematic literature searches (last search in March 2018), were provided. Thirty-one experts, who were entitled to vote, rated the final clinical recommendations and statements. RESULTS: Here we present the treatment recommendations separately for patients with metastatic seminoma and non-seminomatous GCT (stages IIA/B and IIC/III), for restaging and treatment of residual masses, and for relapsed and refractory disease stages. The recommendations also cover extragonadal and sex cord/stromal tumours, the management of follow-up and toxicity, quality-of-life aspects, palliative care, and supportive therapy. CONCLUSION: Physicians and other medical service providers who are involved in the diagnostics, treatment, and follow-up of GCT (all stages, outpatient and inpatient care as well as rehabilitation) are the users of the present guideline. The guideline also comprises quality indicators for measuring the implementation of the guideline recommendations in routine clinical care; these data will be presented in a future publication.

Management of Germ Cell Tumours of the Testis in Adult Patients. German Clinical Practice Guideline Part I: Epidemiology, Classification, Diagnosis, Prognosis, Fertility Preservation, and Treatment Recommendations for Localized Stages.

INTRODUCTION: This is the first German evidence- and consensus-based clinical guideline on diagnosis, treatment, and follow-up on germ cell tumours (GCTs) of the testis in adult patients. We present the guideline content in two publications. Part I covers the topic's background, methods, epidemiology, classification systems, diagnostics, prognosis, and treatment recommendations for the localized stages. METHODS: An interdisciplinary panel of 42 experts including 1 patient representative developed the guideline content. Clinical recommendations and statements were based on scientific evidence and expert consensus. For this purpose, evidence tables for several review questions, which were based on systematic literature searches (last search was in March 2018) were provided. Thirty-one experts entitled to vote, rated the final clinical recommendations and statements. RESULTS: We provide 161 clinical recommendations and statements. We present information on the quality of cancer care and epidemiology and give recommendations for staging and classification as well as for diagnostic procedures. The diagnostic recommendations encompass measures for assessing the primary tumour as well as procedures for the detection of metastases. One chapter addresses prognostic factors. In part I, we separately present the treatment recommendations for germ cell neoplasia in situ, and the organ-confined stages (clinical stage I) of both seminoma and nonseminoma. CONCLUSION: Although GCT is a rare tumour entity with excellent survival rates for the localized stages, its management requires an interdisciplinary approach, including several clinical experts. Quality of care is highly related to institutional expertise and can be reassured by established online-based second-opinion boards. There are very few studies on diagnostics with good level of evidence. Treatment of metastatic GCTs must be tailored to the risk according to the International Germ Cell Cancer Collaboration Group classification after careful diagnostic evaluation. An interdisciplinary approach as well as the referral of selected patients to centres with proven experience can help achieve favourable clinical outcomes.

Interrater agreement, reliability and validity of the Glamorgan Paediatric Pressure Ulcer Risk Assessment Scale.

AIMS AND OBJECTIVES: To determine (1) What is the degree of interrater agreement and reliability of Glamorgan scale item and sum scores? and (2) Are Glamorgan scale sum scores valid? BACKGROUND: Pressure ulcer risk assessment scales are recommended for use in clinical practice. For paediatric patients, 12 instruments are currently described. Empirical evidence about the performance of Glamorgan scale scores in clinical practice is limited. DESIGN: An observational validation study was conducted on a paediatric cardiac unit of a large university hospital in Germany in April and May 2010. METHODS: Children were assessed simultaneously and independently by varying convenience samples of three nurses per assessment situation. Pressure ulcer risk was measured by the Glamorgan scale and a 100 mm Visual Analogue Scale (VAS). Proportions of agreement (po ), multirater kappa and intraclass correlation coefficients were calculated. RESULTS: Thirty children were rated by 27 nurses. Median children's age was 5·5 years. Agreement among item scores was high, whereas reliability coefficients of item scores were low. Interrater reliability for the Glamorgan scale sum scores was higher than for VAS scores. Correlation between both scales was moderate. CONCLUSIONS: High agreement among item scores indicates that nurses are able to make precise judgements. The low interrater reliability of item and sum scores indicates that nurses were unable to differentiate the rated children based on their item and sum scores, thus providing little additional clinical relevant information about pressure ulcer risk in this setting. RELEVANCE TO CLINICAL PRACTICE: The Glamorgan scale and the VAS are unable to make clear distinctions in a low-risk setting. Therefore, it is unlikely that the tools in this setting provide additional information for clinical decision making. Both tools are not recommended for daily use.

Knowledge and use of pressure ulcer preventive measures in nursing homes: a comparison of Dutch and German nursing staff.

AIMS AND OBJECTIVES: To examine the knowledge and use of pressure ulcer preventive measures among nursing staff in Dutch and German nursing homes. BACKGROUND: Studies in the Netherlands and Germany have shown a large discrepancy in pressure ulcer prevalence rates among nursing homes in both countries and concluded that some of this variance could be explained by differences in pressure ulcer prevention. DESIGN: A cross-sectional questionnaire survey nested in a prospective multicenter cohort study. METHODS: A questionnaire was distributed to nursing staff employed in 10 Dutch nursing homes (n = 600) and 11 German nursing homes (n = 578). Data were collected in January 2009. RESULTS: The response rate was 75·7% in the Netherlands (n = 454) and 48·4% in Germany (n = 283). Knowledge about useful pressure ulcer preventive measures was moderate in both countries, while nonuseful preventive measures were poorly known. On average, only 19·2% (the Netherlands) and 24·6% (Germany) of preventive measures were judged correctly as nonuseful. The same pattern could be seen with regard to the use of preventive measures, because nonuseful preventive measures were still commonly used according to the respondents. CONCLUSIONS: The results indicate that the respondents' knowledge and use of pressure ulcer preventive measures could be improved in both countries, especially for nonuseful measures. Changes and improvements can be achieved by providing sufficient education and refresher courses for nurses and nursing assistants employed within Dutch and German nursing homes. RELEVANCE TO CLINICAL PRACTICE: Recurring education about pressure ulcer prevention is required among nursing staff employed in Dutch and German nursing homes, particularly in relation to the use of ineffective and outdated preventive measures. Obstacles regarding the implementation of preventive measures should be addressed to achieve a change in practice.

Interrelationships between Skin Structure, Function, and Microbiome of Pregnant Females and Their Newborns: Study Protocol for a Prospective Cohort Study.

BACKGROUND: Pregnancy leads to several skin changes, but evidence about structural and functional skin changes is scarce. Findings on skin structure and function in children in their first year reveal rapid skin maturation, but evidence indicates that in particular, water holding and transport mechanisms are different from adults. Important questions include whether maternal cutaneous properties predict infant skin condition, and if so, how. This is especially relevant for the skin's microbiome because it closely interacts with the host and is assumed to play a role in many skin diseases. Therefore, the study objective is to explore characteristics of skin and hair of pregnant women and their newborns during pregnancy and in the first six months after delivery and their associations. METHODS: The study has an observational longitudinal design. We are recruiting pregnant females between 18 and 45 years using advertisement campaigns in waiting areas of gynecologists and hospital's outpatient services. A final sample size of n = 100 women is the target. We perform noninvasive, standardized skin, hair, and skin microbiome measurements. We establish the baseline visit during pregnancy until at the latest four weeks before delivery. We schedule follow-up visits four weeks and six months after birth for mothers and their newborns. We will calculate descriptive statistical methods using frequencies and associations over time depending on scale levels of the measurements. Discussion. The majority of previous studies that have investigated infants' skin microbiome and its associations used cross-sectional designs and focused on selected characteristics in small samples. In our longitudinal study, we will characterize a broad range of individual and environmental characteristics of mothers and their newborns to evaluate interrelationships with skin parameters and their changes over time. Considering the combination of these multiple variables and levels will allow for a deeper understanding of the complex interrelationship of the newborn's skin maturation. This trial is registered with ClinicalTrials.gov (Identifier: NCT04759924).

The National Expert Standard Pressure Ulcer Prevention in Nursing and pressure ulcer prevalence in German health care facilities: a multilevel analysis.

AIMS AND OBJECTIVES: The objective of this study was to describe the relationship between the German National Expert Standard Pressure Ulcer Prevention and the pressure ulcer prevalence in German nursing homes and hospitals. BACKGROUND: The patient outcome pressure ulcer does not only depend on individual characteristics of patients, but also on institutional factors. In Germany, National Expert Standards are evidence-based instruments that build the basis of continuing improvement in health care quality. It is expected that after having implemented the National Expert Standard Pressure Ulcer Prevention, the number of pressure ulcers should decrease in health care institutions. DESIGN: The analysed data were obtained from two cross-sectional studies from 2004-2005. METHODS: A multilevel analysis was performed to show the impact of the National Expert Standard Pressure Ulcer Prevention on pressure ulcer prevalence. RESULTS: A total of 41.5% of hospitals and 38.8% of the nursing homes claimed to use the National Expert Standard in the process of developing their local protocols. The overall pressure ulcer prevalence grade 2-4 was 4.7%. Adjusted for hospital departments, survey year and individual characteristics, there was no significant difference in the prevalence of pressure ulcers between institutions that refer to the National Expert Standard or those referring to other sources in developing their local protocols (OR=1.14, 95% CI=0.90-1.44). CONCLUSIONS: There was no empirical evidence demonstrating that local protocols of pressure ulcer prevention based on the National Expert Standard were superior to local protocols which refer other sources of knowledge with regard to the pressure ulcer prevalence. RELEVANCE TO CLINICAL PRACTICE: The use of the National Expert Standard Pressure Ulcer Prevention can neither be recommended nor be refused. The recent definition of implementation of Expert Standards should be mandatory for all health care institutions which introduce Expert Standards.

Pressure ulcer prevention in German healthcare facilities: adherence to national expert standard?

The German National Expert Standard "Pressure Ulcer Prevention in Nursing" provides evidence-based recommendations. This study shows that interventions that are not recommended are still being used in nursing practice, especially in those institutions in which the National Expert Standard was not used during the development of these procedures. A systematic evaluation, by rounds or case meetings, of nursing preventive interventions that are performed is indicated.

The trend of pressure ulcer prevalence rates in German hospitals: results of seven cross-sectional studies.

Pressure ulcer prevalence rates provide useful information about the magnitude of this health problem. Only limited information on pressure ulcers in Germany was available before 2001. The purpose of this study was to compare results of seven pressure ulcer prevalence surveys which were conducted annually between 2001 and 2007 and to explore whether pressure ulcer prevalence rates decreased. The second aim was to evaluate if the measured prevalence rates of our sample could be generalised for all German hospitals. Results of seven point pressure ulcer prevalence studies conducted in 225 German hospitals were analysed. Chi-square tests, chi-square trend tests and one-way ANOVA to assess differences and trends across the years were applied. The sample was stratified according to pressure ulcer risk and speciality. Finally, study samples were compared with the potential population. In total data of 40,247 hospital patients were analysed. The overall pressure ulcer prevalence rate in German hospitals was 10.2%. Patient samples of each year were comparable regarding gender, age and pressure ulcer risk. Pressure ulcer prevalence rates decreased from 13.9% (year 2001) to 7.3% (year 2007) (p<0.001). When excluding non-blanchable erythema prevalence rates decreased from 6.4% (year 2001) to 3.9% (year 2007) (p=0.015). An explicit decrease of prevalence rates was observed on geriatric wards. Prevalence rates on neurological and intensive care units remained stable. With some limitations our study results are representative for all hospitals within Germany. It is highly probable that the decrease of prevalence rates was due to an increased awareness of the pressure ulcer problem in Germany and subsequent efforts to improve pressure ulcer prevention and treatment. The quality of clinical practice regarding pressure ulcer prevention and treatment has improved. However, pressure ulcers are still relevant and require attention. In 2007, one out of 10 hospital patients who were at pressure ulcer risk had at least one pressure related skin damage.

Evidence-based education and nursing pressure ulcer prevention textbooks: does it match?

BACKGROUND: The education of nurses has influenced the way of nursing practice for a long time. Nurse educators are required to offer up-to-date educational material, and textbooks are the most frequently used sources of knowledge during a nurse's education. AIM: In this study, researchers investigated the extent to which textbooks were evidence based regarding preventing pressure ulcers and knowing what recommendations to make for nursing students and publishers of nursing textbooks. METHOD: Educators at nursing schools in Germany were contacted by telephone to identify the most often used nursing textbooks. The recommendations of the German Expert Standard of Pressure Ulcer Prevention were compared with the content of the textbooks in a content analysis. Additionally, teachers were asked what additional material they were using to help prepare lectures. RESULTS: Only one of the four analysed textbooks complied with the recommendations of the German Expert Standard. Contents of the other books were incomplete. The authors of some books did not mention any up-to-date scientific evidence. The teachers often used additional material such as the German Expert Standard and research articles to prepare their lectures. DISCUSSION: German nursing textbooks were classified into research-based and authoritative texts. Because of the fast development and availability of research findings, one recommendation is that new forms of "textbooks" such as CD ROMs should be considered.

[Transfer of theory into practice in geriatric care: relation between pressure ulcer prevalence and guideline implementation]. / Theorie-praxis-Transfer in der Altenpflege: Zusammenhang zwischen der Dekubitusprävalenz und der Implementierung des Expertenstandards.

Clinical guidelines and best practice standards are designed to improve the quality of patient care, yet their sole existence is no guarantee that they will be transferred into practice. The aim of this study was to examine which parts of the implementation process have an effect on pressure ulcer prevalence. The setting took place in ten German nursing homes that had taken part in the annual German pressure ulcer surveys in 2005, 2006 and 2007, where staff members who are involved in implementing best practice standards for pressure ulcer prevention into practice were interviewed. The implementation process of each home was assessed with a scale and the nursing homes were then sorted by their scale scores as well as by the order of their prevalence rates. These results were compared. Nursing homes whose implementation had higher scores had low pressure ulcer prevalence rates. Homes with lower scores had higher prevalence rates. A stringent implementation plan based on a systematic and continuing analysis as well as on evidence-based interventions has the potential to lower pressure ulcer prevalence rates. We therefore recommend the use of change management strategies that improve staff communication and increase their incentive, include continuing staff education and the use of efficient evaluation instruments. These measures lead to more efficient nursing practice and improve the quality of care.

Pressure ulcer: Prevention protocols and prevalence.

AIMS AND OBJECTIVES: The aim of this paper is to analyse the protocols used in German hospitals and nursing homes for the prevention of pressure ulcers with regard to their contents and accordance with the national standard of the Deutsches Netzwerk für Qualitätsentwicklung in der Pflege (DNQP) and the European Pressure Ulcer Advisory Panel (EPUAP) and Royal College of Nursing (RCN) guidelines. Additionally, it is to show the relation between the existence and contents of the protocols of pressure ulcer prevention and pressure ulcer prevalence in the institutions. METHODS: On a fixed date trained nursing staff gathers data regarding the frequency of pressure ulcers during a prevalence survey. The existence of a pressure ulcer is established by physical examination after the risk assessment with the Braden-Scale. The patient's or resident's informed consent is a precondition for his or her participation in the survey. The protocols are available as hard copies on paper or electronic files. RESULTS: Only two out of the 21 protocols developed in-house are completely concurrent with the expert standard. The EPUAP and RCN guidelines include the aspect of training and further education that is missing in the in-house protocols and the DNQP expert standard. Evaluation of the data reveals that there is no relation between the availability of protocols and pressure ulcer prevalence. Neither is there any relation between the contents and pressure ulcer prevalence. The institutions currently developing protocols have the lowest prevalence rates. CONCLUSION: It is obvious that, while developing in-house protocols, the discussion about pressure ulcer prevention has led to a higher problem awareness in nurses and thus to an increased attentiveness in daily nursing practice which then results in improved outcomes. Two years after its publication, the expert standard is still not very well known, therefore this concentrated form of the most up-to-date knowledge is not available to all nursing staff as a basis for evidence-based practice. In addition, the sometimes outdated knowledge of nursing staff impedes the implementation of evidence-based practice guidelines. A systematic implementation strategy that assists guidelines being applied in practice is therefore required.

Implementation Interventions Used in Nursing Homes and Hospitals: A Descriptive, Comparative Study between Austria, Germany, and The Netherlands.

Translating guidelines into nursing practice remains a considerable challenge. Until now, little attention has been paid to which interventions are used in practice to implement guidelines on changing clinical nursing practice. This cross-sectional study determined the current ranges and rates of implementation-related interventions in Austria, Germany, and The Netherlands and explored possible differences between these countries. An online questionnaire based on the conceptual framework of implementation interventions (professional, organizational, financial, and regulatory) from the Cochrane Effective Practice and Organization of Care (EPOC) data collection checklist was used to gather data from nursing homes and hospitals. Provision of written materials is the most frequently used professional implementation intervention (85%), whereas changes in the patient record system rank foremost among organisational interventions (78%). Financial incentives for nurses are rarely used. More interventions were used in Austria and Germany than in The Netherlands (20.3/20.2/17.3). Professional interventions are used more frequently in Germany and financial interventions more frequently in The Netherlands. Implementation efforts focus mainly on professional and organisational interventions. Nurse managers and other responsible personnel should direct their focus to a broader array of implementation interventions using the four different categories of EPOC's conceptual framework.

Frequency of pressure ulcers in the paediatric population: a literature review and new empirical data.

BACKGROUND: Published pressure ulcer incidence and prevalence figures in the paediatric population vary widely. The frequency of pressure ulcers in the German paediatric population is unknown. Currently, a systematic synthesis of PU incidence and prevalence studies in paediatric settings is missing. OBJECTIVES: To determine the prevalence and incidence of pressure ulcers in the paediatric population and the anatomic sites that are most often affected; and whether pressure ulcer occurrence in German paediatric hospital samples is comparable to international figures. DESIGN: A systematic literature review and a secondary data analysis were conducted. METHODS: The MEDLINE und CINAHL databases were searched. Methodological quality of relevant studies was systematically evaluated, relevant data extracted and synthesised. Data from five German-wide pressure ulcer prevalence studies were analysed. RESULTS: In total, 19 studies were identified containing any information about pressure ulcer frequency in the paediatric population. Methodological quality of many studies was low. Taking only higher quality studies into account, pressure ulcer incidence was approximately 7% in the total paediatric population and 26% in the ICU setting. Prevalence estimates varied between 2% and 28%. Excluding grade 1 pressure ulcers, prevalence ranged from 1% to 5%. Especially in newborns and infants, the head was most often affected by pressure injuries. Many pressure ulcers were caused by medical devices. In Germany, pressure ulcer prevalence grade 1-4 in the general paediatric population was 2.3% (95% CI 1.4-3.6%). Excluding grade 1 pressure ulcer, prevalence was 0.8% (95% CI 0.4-1.8%). CONCLUSIONS: Due to considerable methodological limitations and insufficient reporting there is a dearth of sound empirical evidence about pressure ulcer frequency in the paediatric population. Conducting and reporting of future studies must be improved. Pressure ulcer prevalence in German hospital samples was comparable to international figures. Newborns, infants, and small children are at higher risk to develop pressure ulcers at the occipital region as compared to other anatomic locations. The likelihood of developing sacral and heel pressure ulcers increases with increasing age and growth.