Self-assessments and determinants of HRQoL in a German MS population.

OBJECTIVES: The importance of health-related quality of life (HRQoL) in multiple sclerosis (MS) is widely acknowledged. In 2015, a multicenter study was launched to assess the HRQoL and coping styles of chronically ill persons in Germany. The aims of this paper were (i) to describe how persons affected by MS assess their HRQoL and (ii) find out sociodemographic and disease-specific determinants of HRQoL. MATERIALS AND METHODS: A quantitative survey (optionally per paper-pencil or online) was conducted between March and October 2015 in Germany. Recruitment ways were as follows: Associations of the German Multiple Sclerosis Society (DMSG), medical practices specialized in neurology/MS, hospitals, public events, social networks, and self-help clearinghouses. To measure HRQoL, the Multiple Sclerosis International Quality of Life (MusiQoL) questionnaire and the short form of the Fear of Progression Questionnaire (FoP-Q) were used. RESULTS: A total of 1220 individuals with MS participated in the study. Frequent problems reported were related to activities of daily living as well as sentimental and sexual life. Multiple regression analyses identified disease severity and comorbidity-in different directions (positive and negative)-as the strongest factors in predicting activities of daily living, symptoms, sentimental and sexual life, and reject. The demographic variables sex, age, education, and employment status also have different impact on the HRQoL. CONCLUSIONS: Using HRQoL measures can be feasible outcomes in addition to clinical assessments of MS and other chronic diseases and can help better managing the care. Some challenges have to be taken into account involving patients and the limitations of our empirical study.

Long-term evaluation of community health promotion: using capacity building as an intermediate outcome measure.

OBJECTIVES: Between 2001 and 2012, the health authority of Hamburg-Eimsbüttel carried out a health promotion programme for children and their parents in a disadvantaged neighbourhood called Lenzsiedlung. The programme consisted of different action fields aiming at sustainable establishment of community capacities. STUDY DESIGN: The research goal was the long-term assessment of community capacities with a newly developed instrument 'KEQ' (KEQ = Kapazitätsentwicklung im Quartier/capacity building in small areas/neighbourhoods). Practitioners and researchers wanted to know whether community capacities could be increased, which changes occurred during the programme and whether processes of capacity building could be maintained. Research results were also used for the continuous adjustment of the programme to community needs. METHODS: Three surveys on community capacities were conducted (t1: June 2006 [including a retrospective measurement of t0: 2001]; t2: June 2008; and t3: November 2011), each directed to 40-60 stakeholders of the Lenzsiedlung. The instrument consists of five domains (participation, local leadership, available resources, networking and cooperation and health care) with a total of 51 items. RESULTS: For the community capacities, we found a positive trend from 2001 to 2006 supported by data from a documentary analysis over the same period of time. Then, 2006-2011 was a phase of consolidation with only slight improvements (e.g. in the particularly important domain 'health care'). CONCLUSIONS: The results show the feasibility of a community health promotion programme and its maintenance over a period of 10 years. However, Lenzgesund was not the sole programme in the neighbourhood during the period of observation, so that not all improvements in capacities are directly assignable to the interventions. The instrument mainly reflects the possibly one-sided perspective of the interviewed experts from the community.

[Capacity Building for Prevention and Health Promotion for Children and Parents in a Deprived Urban Quarter: Lenzgesund]. / Strukturbildung für Prävention und Gesundheitsförderung bei Kindern und Eltern in einem benachteiligten Quartier: Lenzgesund.

In 2005 the local health authority Hamburg-Eimsbüttel developed a prevention programme for the disadvantaged quarter "Lenzsiedlung" which has been implemented by the stakeholders committee "Round Table Lenzgesund" and other partners led by the health authority. The Department of Medical Sociology and Health Economics of the University Medical Centre had taken on the accompanying analysis and long-term evaluation with a mixture of qualitative and quantitative methods for health reporting and evaluation and a new instrument for measuring capacity building in the quarter (KEQ).

[How many patient transfer rooms are necessary for my OR suite? : Effect of the number of OR transfer rooms on waiting times and patient throughput in the OR - analysis by simulation]. / Wie viele Patientenschleusen braucht mein OP-Bereich? : Einfluss der Zahl von OP-Schleusen auf Wartezeiten und Patientendurchsatz im OP - Analyse mithilfe einer Simulation.

INTRODUCTION: In most hospitals the operating rooms (OR) are separated from the rest of the hospital by transfer rooms where patients have to pass through for reasons of hygiene. In the OR transfer room patients are placed on the OR table before surgery and returned to the hospital bed after surgery. It could happen that the number of patients who need to pass through a transfer room at a certain point in time exceed the number of available transfer rooms. As a result the transfer rooms become a bottleneck where patients have to wait and which, in turn, may lead to delays in the OR suite. In this study the ability of a discrete event simulation to analyze the effect of the duration of surgery and the number of ORs on the number of OR transfer rooms needed was investigated. METHODS: This study was based on a discrete event simulation model developed with the simulation software AnyLogic®. The model studied the effects of the number of OR transfer rooms on the processes in an OR suite of a community hospital by varying the number of ORs from one to eight and using different surgical portfolios. Probability distributions for the process duration of induction, surgery and recovery and transfer room processes were calculated on the basis of real data from the community hospital studied. Furthermore, using a generic simulation model the effect of the average duration of surgery on the number of OR transfer rooms needed was examined. RESULTS: The discrete event simulation model enabled the analysis of both quantitative as well as qualitative changes in the OR process and setting. Key performance indicators of the simulation model were patient throughput per day, the probability of waiting and duration of waiting time in front of OR transfer rooms. In the case of a community hospital with 1 transfer room the average proportion of patients waiting before entering the OR was 17.9 % ± 9.7 % with 3 ORs, 37.6 % ± 9.7 % with 5 ORs and 62.9 % ± 9.1 % with 8 ORs. The average waiting time of patients in the setting with 3 ORs was 3.1 ± 2.7 min, with 5 ORs 5.0 ± 5.8 min and with 8 ORs 11.5 ± 12.5 min. Based on this study the community hospital needs a second transfer room starting from 4 ORs so that there is no bottleneck for the subsequent OR processes. The average patient throughput in a setting with 4 ORs increased significantly by 0.3 patients per day when a second transfer room is available. The generic model showed a strong effect of the average duration of surgery on the number of transfer rooms needed. CONCLUSION: There was no linear correlation between the number of transfer rooms and the number of ORs. The shorter the average duration of surgery, the earlier an additional transfer room is required. Thus, hospitals with shorter duration of surgery and fewer ORs may need the same or more transfer rooms than a hospital with longer duration of surgery and more ORs. However, with respect to an economic analysis, the costs and benefits of installing additional OR transfer rooms need to be calculated using the profit margins of the specific hospital.

[Customer and patient satisfaction. An appropriate management tool in hospitals?]. / Kunden- beziehungsweise Patientenzufriedenheit. Ein geeignetes Steuerungsinstrument im Krankenhaus?

Recently, the concept of patient satisfaction has been established as an essential part of the quality management of hospitals. Despite the concept's lack of theoretical and methodological foundations, patient surveys on subjective hospital experiences contribute immensely to the improvement of hospitals. What needs to be considered critically in this context is the concept of customer satisfaction for patients, the theoretical integration of empirical results, the reduction of false satisfaction indications and the application of risk-adjusted versus naïve benchmarking of data. This paper aims to contribute to the theoretical discussion of the topic and to build a basis for planning methodologically sound patient surveys.

Bottle microresonator with actively stabilized evanescent coupling.

The evanescent coupling of light between a whispering-gallery-mode bottle microresonator and a subwavelength-diameter coupling fiber is actively stabilized by means of the Pound-Drever-Hall technique. We demonstrate the stabilization of a critically coupled resonator with a control bandwidth of 0.1 Hz, yielding a residual transmission of (9±3)×10(-3) for more than an hour. Simultaneously, the frequency of the resonator mode is actively stabilized.

[Integration of self-help associations into the health services system--developments and perspectives]. / Integration von Selbsthilfefreundlichkeit in das Gesundheitswesen--Entwicklungen und Perspektiven.

The concept of a special label for "self-help-friendly" institutions was first developed for hospitals. A demonstration project (funded by the BKK BV, the German Federal Association of Company Health Insurance Funds) was launched in Hamburg. Between 2004 and 2007 quality criteria were developed and put into practice. Shortly thereafter, a group of experienced self-help supporters started to integrate self-help friendliness into quality management systems for ambulatory care. Recently similar developments have been initiated in the Public Health Services. After an introduction on the origins and political context of these new developments we present in this article the efforts and experiences in the 3 mentioned areas of the health-care system. It can be shown that user-based quality standards are becoming more and more common in quality development processes of the health-care services. In the last part we introduce the national "Network Self-Help-Friendliness in the Health Services--Together for Self-Help and Patient Orientation" as the new structure for further implementation, and give hints that the organised self-help is facing completely new challenges.

[Self-help friendliness as quality target in the SHI health care]. / Selbsthilfefreundlichkeit als Qualitätsziel in der vertragsärztlichen Versorgung1.

OBJECTIVES: The article discusses different possibilities to integrate a sustainable co-operation with self-help groups within the framework of the obligatory quality management in SHI-physicians' establishments. The results of a pilot study, which was conducted to develop a model project "self-help friendly doctor's offices", are presented and discussed. METHODS: Until now the subject has been being rarely discussed in the scientific literature. Therefore, we carried out an extensive internet research and document analysis of available quality management systems (QMS). Furthermore, the representatives of the QMS were asked to assess both the current status of integration and prospective chances of including "self-help friendliness" as a core element of quality. RESULTS: We could identify 2 generic and 5 specific QMS concerning ambulatory medical care which all offer the chance to integrate "self-help Friendliness" as a quality criterion. The concept of "self-help friendly doctor's offices" also found great acceptance with the representatives of the QMS. As a side effect of the QMS-expert-interviews, 3 of them announced that they would include this aspect in the current development of the quality objectives and criteria of their QMS. CONCLUSION: The criterion "self-help friendliness" is principally capable of being integrated in several QMS. However, the further development of the approach needs answers to different questions (e.g., hierarchy of quality criteria), and a test period with all parties involved. Parallel processes in the health-care system as well as the political regulation of quality management in health-care are of great importance for a successful implementation of "self-help friendliness".

[Performance of self-help groups and their economic evaluation]. / Leistungen von Selbsthilfegruppen und deren ökonomische Bewertung.

Hoffmann von Fallersleben is quoted with the sentence "Self-help is worthwhile, because it does not demand anything from others". This sounds catchy; it is, however, wrong: Self-help groups ask for support, particularly for financial resources for the work of either individual, highly organized self-help associations or for general support of self-help groups via local contact and information centers ("contact points for self-help groups"). With this request for economic "investments" in self-help, the question arises whether this is profitable for the country, the local authority or the social health insurance. In principle, the initial answer to this is: yes, the work of self-help groups is worthwhile for a single person, but also for the larger community, as various kinds of services are provided by self-help groups and organizations. Despite many surveys of members or co-operation partners which show positive effects of self-help groups, the question remains whether services of self-help groups can be measured and economically evaluated. The socio- political question regarding funding is closely connected to the idea of an economic evaluation of self-help groups. The aim of this article is to summarize and discuss which empiric approaches and findings are available on this subject. The monetary value for the work done per member of self-help groups and year lies between approximately 700 and 900 EUR.

[Integration of self-help associations into the quality management of outpatient and inpatient health care]. / Integration von Selbsthilfezusammenschlüssen in das Qualitätsmanagement im ambulanten und stationären Versorgungsbereich.

The idea of introducing a special label for "self-help-friendly" institutions was first developed for hospitals. A demonstration project (BKK BV, the German Federal Association of Company Health Insurance Funds) was launched and organized by the local contact point for self-help groups in Hamburg. Shortly thereafter, a group of experienced self-help supporters started to implement self-help friendliness in quality management systems for ambulatory care. These endeavours, presented in this article, prove that not only professional but also user-based quality standards are becoming more and more common in quality development processes of health care services. The general legislative and political conditions for these developments have considerably improved over the past few years. This will be the foundation for a new quality of the doctor-patient relationship.

Patient-reported outcomes in hernia repair.

BACKGROUND: The project aimed at testing the feasibility of a quality improvement system based on patient-reported outcomes in short-stay surgery for groin hernia repair. METHODS: In two centres for short-stay surgery all patients referred for hernia repair were surveyed between August 1999 and January 2002. Patients reported on health-related quality of life (SF-36), symptoms (Hernia Symptom Checklist, HSCL) and other indicators pre-operatively (T0) and 14 days (T1) and 6 months post-operatively (T2). Three of the eight SF-36 subscales (physical functioning, bodily pain, and role physical) and the HSCL at T2 were considered as main outcome indicators. The main outcomes were analysed by generalized linear models with regard to predictors. RESULTS: At T0 a total of 342 hernia patients were included. The response rate at T2 was 54.1% (92.4% males, 58.6 years of age). At T2 only 21.1% did not report complaints (i.e. haematoma, pain, numbness) post-operatively. The overall positive course is reflected by the HSCL: from 32.4% pre-operatively, it rises slightly to 38.5% at T1 and decreases to 10.6% at T2 (T0-T2: P < 0.001). The SF-36 subscales "physical functioning", "bodily pain", and "role physical" showed the same course over time (slight decrease of health-related quality of life at T1 and large increase at T2). The main patient-reported outcomes were mainly influenced by the pre-operative level, age, and self-reported post-operative complaints. CONCLUSION: The low response rate was mainly due to non-delivery of questionnaires at T1 during the regular post-operative visit by the operating physician. Though non-response occurs under conditions of routine care, meaningful information was gained which should be used for quality improvement activities. Because the pre-operative level is a major determinant of the post-operative health outcomes, the prospective pre-post measurement should be standard, in case institutional comparisons are intended.

[Empowerment by capacity building in urban quarters--first results and assessment of a new standardised instrument]. / Empowerment durch Kapazitätsentwicklung im Quartier--erste Ergebnisse und Einschätzung eines Erhebungsinstruments.

AIMS: Capacity building is regarded as an intermediate outcome and success parameter for community health promotion and empowerment. The first aim of the study was the development and examination of a tool to measure capacity building in the context of a programme of health promotion for children and parents in a socially disadvantaged quarter in Hamburg (about 3000 residents, 60% with migration background). The second aim was to measure capacity building within a period of five years. METHOD: A survey was carried out with 27 professionals from the health and social field. Dimensions of the instrument were: citizen participation, local leadership, available resources, networking and co-operation, support of residents. At the same time, we tested to what extent the instrument is suitable for resident surveys. Furthermore, pretest instrument and results were discussed with our advisory board regarding potential improvements. RESULTS: The result of the project, in addition to its practical use in the quarter, consists of the generation of a psychometrically tested instrument to measure capacity building. Furthermore, the experience contributed to the expertise on how such a study can be conducted. A comparison of the situation in 2006 with the situation in 2001 showed considerable improvements in all dimensions of capacity building in the quarter. CONCLUSION: Establishing the instrument on a long-term basis calls for more intensive examination not only of the chances, but also the limitations of the tool. We mainly attribute the overall positive picture that was gained within a period of five years to the generally supportive climate of development in the quarter as well as to the strong and continuous commitment of individual persons involved.

[The economic benefits of self-help associations]. / Zur Frage des volkswirtschaftlichen Nutzens der Leistungen von Selbsthilfegruppen.

OBJECTIVES: This article primarily reflects on the economic benefits of self-help associations, and the problems of their adequate evaluation. METHODS: We present a critical discussion of the concepts in the economic evaluation and empiricism by secondary analysis of data available based on a review of published studies as well as the re-analysis of primary data from our Hamburg study in 2003 (n=345 or 52.4% of the self-help associations registered in Hamburg). RESULTS: Most approaches to evaluate the economic benefits of self-help groups were inspired by the idea of output-related, cost-benefit analysis, by which activities of members were monetarily estimated. Projected for Hamburg, the productive performance amounts to nearly 1.8 million Euro per month, and 21.5 million per year. Furthermore, additional voluntary commitment can be mobilized at 300,000 Euro per month. CONCLUSION: All calculations are based on some assumptions (e.g., coefficient of productivity, wages) which cannot be finally verified. In view of the state of research reviewed we strongly recommend to bring forward both outcome-oriented approaches of economic evaluation, and new representative studies of self-help groups for Germany as a whole.

[Social factors influencing participation in self-help groups or organisations--results from selected questions for the health monitor]. / Soziale Einflussfaktoren der Teilnahme an Selbsthilfezusammenschlüssen--Ergebnisse ausgewählter Fragen des Gesundheitsmonitors.

OBJECTIVES: Using selected data collected by the Health Monitor (Bertelsmann-Stiftung) from 1,539 adults aged between 18 and 79 years this article describes which social factors have an impact on participation in self-help groups or organisations. Furthermore, questions about the length of participation, fields of self-help activity, and their usefulness were analysed. METHODS: All participants were approached in written form. The questionnaire included 103 health-related items (6 about self-help), and 15 demographic characteristics. The sample was weighted statistically by federal state, sex and age. RESULTS: 4.1% stated to be a member of self-help organisations for chronically ill or disabled people. On the whole, 9.1% have participated in self-help activities during their lifetime (currently active: 2.8%). Membership in self-help organisations increases with age, social class and according to personal involvement, whereas participation in self-help groups is quite different. The rate of participation of women is nearly twice as high as that of men (11.1 versus 6.9%). Generally, participation in self-help groups was also rated positively, but assessments vary with social class and the length of using them. CONCLUSION: Particularly with regard to the distribution of self-help participants depending on social class there are some discrepancies to other studies. These differences can supposedly be ascribed to methodical factors (e. g., social class index, sample size).

Constructive biases in social judgment: experiments on the self-verification of question contents.

Merely thinking about a proposition can increase its subjective truth, even when it is initially denied. Propositions may trigger inferences that depend not on evidence for truth but only on the semantic match with relevant knowledge. In a series of experiments, participants were presented with questions implying positive or negative judgments of discussants in a videotaped talk show. Subsequent ratings were biased toward the question contents, even when the judges themselves initially denied the questions. However, this constructive bias is subject to epistemic constraints. Judgments were biased only when knowledge about the target's role (active agent vs. passive recipient role) was matched by the semantic-linguistic implications of propositions (including action verbs vs. state verbs).

Studies on the dynamics of Strongyloides egg release under stud conditions.

The eggs of Strongyloides westeri were found in the faeces of the foals from the 16th day of their life, with a peak in their numbers between the 30th and 40th day of life. Egg release ceased in all foals irrespective of their date of birth in the months July-August. Parallel examinations of the mares were negative. Recommendations for the control of strongyloidosis in foals are given.

Non-conventional treatments sought by patients after surgery for intramedullary spinal cord tumors.

OBJECTIVE: Despite modern microsurgical techniques and interdisciplinary treatment options, intramedullary spinal cord tumors often lead to profound neurological deficits. Some patients may search for non-scientific or unconventional therapeutic options to treat the symptoms induced by the tumor itself or arising from treatment. The extent of non-scientific therapy use, the rationale behind it, and costs of these forms of therapy are unknown. METHODS: A questionnaire consisting of 20 questions was sent to 60 patients of a single neurosurgical center who had undergone surgery for an intramedullary spinal cord tumor. A retrospective study was carried out based on this data. Histological findings ranged from ependymoma (52.9%), hemangioblastoma (17.6%), cavernoma (14.7%), astrocytoma (8.8%), oligodendroglioma (2.9%) to ganglioglioma (2.9%). Non-scientific therapy was defined as a method not used in routine clinical practice for the treatment of symptoms induced by intramedullary spinal cord tumors. RESULTS: A total of 38 questionnaires was returned. About 55.3% of the patients claimed to use non-scientific therapies. No significant difference between histological types and the percentage of alternative therapy use was detected. There was a gender difference. One third (non user group) to one fourth (user group) did not feel adequately informed about their disease. The monthly costs for non-scientific therapies ranged from 50 to 500 Euros. The main motive for the use of non-scientific therapies was the wish to try everything possible. CONCLUSION: In the daily clinical routine, patients' use of non-scientific therapies may be largely overlooked and underestimated. Neurooncologists should be aware of this phenomenon and encourage an open but critical dialogue with their patients.

Complementary therapy use in patients with glioma: an observational study.

OBJECTIVE: Despite novel multimodal therapeutic approaches, the vast majority of glial tumors are not curable. Patients may search for complementary therapies in order to contribute to the fight against their disease or to relieve symptoms induced by their brain tumor. The extent of the use of complementary or alternative therapies, the patients' rationale behind it, and the cost of complementary therapy for gliomas are not known. We used a questionnaire and the database of the German Glioma Network to evaluate these questions. METHODS: A total of 621 questionnaires were available for evaluation from patients with glial tumors of WHO grades II to grade IV. The patients were recruited from 6 neuro-oncologic centers in Germany. Complementary therapy was defined as methods or compounds not used in routine clinical practice and not scientifically evaluated. RESULTS: Forty percent of the responding patients reported the use of complementary therapies. Significant differences between the group of complementary therapy users and nonusers were seen with respect to age (younger > older), gender (female > male), and education (high education level > low education level). The motivation for complementary therapy use was not driven by unsatisfactory clinical care by the neuro-oncologists, but by the wish to add something beneficial to the standard of care. CONCLUSIONS: In clinical practice, patients' use of complementary therapies may be largely overseen and underestimated. The major motivation is not distrust in conventional therapies. Neuro-oncologists should be aware of this phenomenon and encourage an open but critical dialogue with their patients.