Iris Brandes

The burden of endometriosis: costs and quality of life of women with endometriosis and treated in referral centres

BACKGROUND This study aimed to calculate costs and health-related quality of life of women with endometriosis-associated symptoms treated in referral centres. METHODS A prospective, multi-centre, questionnaire-based survey measured costs and quality of life in ambulatory care and in 12 tertiary care centres in 10 countries. The study enrolled women with a diagnosis of endometriosis and with at least one centre-specific contact related to endometriosis-associated symptoms in 2008. The main outcome measures were health care costs, costs of productivity loss, total costs and quality-adjusted life years. Predictors of costs were identified using regression analysis. RESULTS Data analysis of 909 women demonstrated that the average annual total cost per woman was €9579 (95% confidence interval €8559-€10 599). Costs of productivity loss of €6298 per woman were double the health care costs of €3113 per woman. Health care costs were mainly due to surgery (29%), monitoring tests (19%) and hospitalization (18%) and physician visits (16%). Endometriosis-associated symptoms generated 0.809 quality-adjusted life years per woman. Decreased quality of life was the most important predictor of direct health care and total costs. Costs were greater with increasing severity of endometriosis, presence of pelvic pain, presence of infertility and a higher number of years since diagnosis. CONCLUSIONS Our study invited women to report resource use based on endometriosis-associated symptoms only, rather than drawing on a control population of women without endometriosis. Our study showed that the economic burden associated with endometriosis treated in referral centres is high and is similar to other chronic diseases (diabetes, Crohns disease, rheumatoid arthritis). It arises predominantly from productivity loss, and is predicted by decreased quality of life.

The significant effect of endometriosis on physical, mental and social wellbeing: results from an international cross-sectional survey

STUDY QUESTION To what extent do the management of endometriosis and the symptoms that remain after treatment affect the quality of life in women with the disease? SUMMARY ANSWER Many women with endometriosis had impaired quality of life and continued to suffer from endometriosis-associated symptoms even though their endometriosis has been managed in tertiary care centres. WHAT IS KNOWN ALREADY The existing literature indicates that quality of life and work productivity is reduced in women with endometriosis. However, most studies have small sample sizes, are treatment related or examine newly diagnosed patients only. STUDY DESIGN, SIZE, DURATION A cross-sectional questionnaire-based survey among 931 women with endometriosis treated in 12 tertiary care centres in 10 countries. PARTICIPANTS/MATERIALS, SETTING, METHODS Women diagnosed with endometriosis who had at least one contact related to endometriosis-associated symptoms during 2008 with a participating centre were enrolled into the study. The study investigated the effect of endometriosis on education, work and social wellbeing, endometriosis-associated symptoms and health-related quality of life, by using questions obtained from the World Endometriosis Research Foundation (WERF) GSWH instrument (designed and validated for the WERF Global Study on Womens Health) and the Short Form 36 version 2 (SF-36v2). MAIN RESULTS AND THE ROLE OF CHANCE Of 3216 women invited to participate in the study, 1450 (45%) provided informed consent and out of these, 931 (931/3216 = 29%) returned the questionnaires. Endometriosis had affected work in 51% of the women and affected relationships in 50% of the women at some time during their life. Dysmenorrhoea was reported by 59%, dyspareunia by 56% and chronic pelvic pain by 60% of women. Quality of life was decreased in all eight dimensions of the SF-36v2 compared with norm-based scores from a general US population (all P < 0.01). Multivariate regression analysis showed that number of co-morbidities, chronic pain and dyspareunia had an independent negative effect on both the physical and mental component of the SF-36v2. LIMITATIONS, REASONS FOR CAUTION The fact that women were enrolled in tertiary care centres could lead to a possible over-representation of women with moderate-to-severe endometriosis, because the participating centres typically treat more complex and referred cases of endometriosis. The response rate was relatively low. Since there was no Institute Review Board approval to do a non-responder investigation on basic characteristics, some uncertainty remains regarding the representativeness of the investigated population. WIDER IMPLICATIONS OF THE FINDINGS This international multicentre survey represents a large group of women with endometriosis, in all phases of the disease, which increases the generalizability of the data. Women still suffer from frequent symptoms, despite tertiary care management, in particular chronic pain and dyspareunia. As a result their quality of life is significantly decreased. A patient-centred approach with extensive collaboration across disciplines, such as pain specialists, psychologists, sexologists and social workers, may be a valuable strategy to improve the long-term care of women with endometriosis. STUDY FUNDING/COMPETING INTEREST(S) The WERF EndoCost study is funded by the World Endometriosis Research Foundation (WERF) through grants received from Bayer Schering Pharma AG, Takeda Italia Farmaceutici SpA, Pfizer Ltd and the European Society of Human Reproduction and Embryology. The sponsors did not have a role in the design and conduct of the study; collection, management, analysis and interpretation of the data; and preparation, review or approval of the manuscript. L.H. is the chief executive and T.D. was a board member of WERF at the time of funding. T.D. holds the Merck-Serono Chair in Reproductive Medicine and Surgery, and the Ferring Chair in Reproductive Medicine at the Katholieke Universiteit Leuven in Belgium and has served as consultant/research collaborator for Merck-Serono, Schering-Plough, Astellas and Arresto.

Gesundheit im Alter

ZusammenfassungPrävention zielt auf die Vermeidung oder Hinauszögerung einer gesundheitlichen Beeinträchtigung. Für die Zielgruppe der Älteren gilt es die Selbstständigkeit möglichst dauerhaft zu erhalten und Pflegeund Hilfsleistungen zu vermeiden oder zu reduzieren. Ansatzpunkte sind Maßnahmen, die auf einen gesunden Lebensstil abstellen. Ausreichende Bewegung, Rauchabstinenz und Normalgewicht haben nachweislich positive Effekte auf die medizinisch und ökonomisch relevanten Erkrankungen wie Diabetes mellitus Typ 2, Herz-Kreislauf-Erkrankungen und bestimmte Demenzen. Die wechselseitigen Einflüsse dieser Erkrankungen untereinander erhöhen das präventive Potenzial. Für Präventionsmaßnahmen muss – wie andere Gesundheitsleistungen auch – die Kosten-Effektivität nachgewiesen werden. Für nichtmedikamentöse Prävention liegen nur wenige deutsche Kosten-Nutzen- Studien vor. Internationale Studienergebnisse lassen sich nur eingeschränkt auf deutsche Verhältnisse übertragen. Untersuchungen der Kosten-Effektivität von Prävention für ältere Menschen sind national wie auch international rar. Die Präventionsforschung ist bislang im Vergleich zu anderen Gesundheitsbereichen vernachlässigt worden. Sowohl methodisch, aber auch in Bezug auf spezifische Interventionen und Zielgruppen besteht erheblicher Forschungsbedarf. Für die Gesundheitsökonomie zeigen sich besondere Herausforderungen durch unterschiedliche Zeitprofile und Kostenträger, aber auch in der Bewertung des Humankapitals der Älteren.AbstractThe objective of prevention is to avoid or to delay health impairments and diseases. For older people it is important to maintain their independence and to avoid and reduce the need for external help such as nursing care. Good starting points are the strategies for healthy life-style. Physical activity, smoking abstinence, and normal weight have proven to have their positive medical and economic effect on many chronic diseases such as type 2 diabetes mellitus, cardiovascular diseases, and certain types of dementia. The potential of prevention increases as those diseases affect one another. As for other health care, the cost-effectiveness of preventive measures must also be examined. There are few German studies addressing the cost-benefit of the non-medication prevention. Results from international studies can only partly be transferred to the German context. The cost-effectiveness for prevention for elderly people has been very rarely researched. Research in the field of prevention is so far not very well developed as for other health fields. There is a need for more specific research for methods, interventions and target groups. In health economics major challenges arise from different time schedules and various purchasers, as well as from the evaluation of human capital for elderly.

Endometriosis Cost Assessment (the EndoCost Study): A Cost-of-Illness Study Protocol

Aims: The EndoCost study aims to calculate the costs of endometriosis from a societal perspective. Methods: This multicentre, prevalence-based cost-of-illness analysis aggregates data on endometriosis costs and quality of life from a prospective hospital questionnaire and from both retrospective and prospective patient questionnaires. The EndoCost study comprises 12 representative tertiary care centres involved in the care of women with endometriosis in 10 countries. The sample includes patients with a laparoscopic and/or histological diagnosis of endometriosis and with at least 1 patient contact related to endometriosis during 2008. The EndoCost study measures direct healthcare costs (e.g. costs of medication, physician visits), direct non-healthcare costs (e.g. transportation costs), and indirect costs of productivity loss. Cost questions are developed specifically for the purpose of the EndoCost study. Quality of life is measured using the EuroQol-5D and relevant parts of the Global Study of Women’s Health instruments. Both aggregate analyses and country-specific analyses are planned for total costs per patient. Costs are broken down into cost drivers and into the various payers that incur costs. Conclusions: The cost estimates provided by the EndoCost cost-of-illness analysis may be used to justify the prioritisation of future research in endometriosis.

[Health in older age: cost of illness and cost-effectiveness of prevention].

ZusammenfassungPrävention zielt auf die Vermeidung oder Hinauszögerung einer gesundheitlichen Beeinträchtigung. Für die Zielgruppe der Älteren gilt es die Selbstständigkeit möglichst dauerhaft zu erhalten und Pflegeund Hilfsleistungen zu vermeiden oder zu reduzieren. Ansatzpunkte sind Maßnahmen, die auf einen gesunden Lebensstil abstellen. Ausreichende Bewegung, Rauchabstinenz und Normalgewicht haben nachweislich positive Effekte auf die medizinisch und ökonomisch relevanten Erkrankungen wie Diabetes mellitus Typ 2, Herz-Kreislauf-Erkrankungen und bestimmte Demenzen. Die wechselseitigen Einflüsse dieser Erkrankungen untereinander erhöhen das präventive Potenzial. Für Präventionsmaßnahmen muss – wie andere Gesundheitsleistungen auch – die Kosten-Effektivität nachgewiesen werden. Für nichtmedikamentöse Prävention liegen nur wenige deutsche Kosten-Nutzen- Studien vor. Internationale Studienergebnisse lassen sich nur eingeschränkt auf deutsche Verhältnisse übertragen. Untersuchungen der Kosten-Effektivität von Prävention für ältere Menschen sind national wie auch international rar. Die Präventionsforschung ist bislang im Vergleich zu anderen Gesundheitsbereichen vernachlässigt worden. Sowohl methodisch, aber auch in Bezug auf spezifische Interventionen und Zielgruppen besteht erheblicher Forschungsbedarf. Für die Gesundheitsökonomie zeigen sich besondere Herausforderungen durch unterschiedliche Zeitprofile und Kostenträger, aber auch in der Bewertung des Humankapitals der Älteren.AbstractThe objective of prevention is to avoid or to delay health impairments and diseases. For older people it is important to maintain their independence and to avoid and reduce the need for external help such as nursing care. Good starting points are the strategies for healthy life-style. Physical activity, smoking abstinence, and normal weight have proven to have their positive medical and economic effect on many chronic diseases such as type 2 diabetes mellitus, cardiovascular diseases, and certain types of dementia. The potential of prevention increases as those diseases affect one another. As for other health care, the cost-effectiveness of preventive measures must also be examined. There are few German studies addressing the cost-benefit of the non-medication prevention. Results from international studies can only partly be transferred to the German context. The cost-effectiveness for prevention for elderly people has been very rarely researched. Research in the field of prevention is so far not very well developed as for other health fields. There is a need for more specific research for methods, interventions and target groups. In health economics major challenges arise from different time schedules and various purchasers, as well as from the evaluation of human capital for elderly.

Die Perspektive der Gesetzlichen Krankenversicherung in der gesundheitsökonomischen Evaluation

ZusammenfassungDie Evaluation von Gesundheitstechnologien aus Perspektive der gesetzlichen Krankenversicherung (GKV) wird zunehmend bedeutsamer. Bisher fehlt aber eine systematische Darstellung der Kassenperspektive. In dem vorliegenden Beitrag wird die Kassenperspektive zunächst aus dem Zielsystem der GKV entwickelt. Dabei wird unterschieden zwischen (1) einem normativen Zielsystem, (2) einem positiven Zielsystem der Einzelkasse und (3) einem positiven Zielsystem des GKV-Systems, wobei das normative Zielsystem als Referenz fungiert. Aus den Zielsystemen werden anschließend die Bewertungen der zentralen Gesundheitsleistungen aus der Kassenperspektive abgeleitet: (1) ärztliche Behandlung, (2) Medikamente, (3) Heil- und Hilfsmittel, (4) stationäre Behandlung, (5) Rehabilitation und (6) Krankengeld. Dabei werden jeweils auch Kalkulationsalternativen der Gesundheitsausgaben aus Kassenperspektive entwickelt, die den — in Evaluationsprojekten differierenden — Zugang zu Datenquellen berücksichtigen. Ein Vergleich der Kassenperspektive mit der gesellschaftlichen Perspektive beschließt den Beitrag.AbstractThe economic evaluation of health technologies from the perspective of the Statutory Health Insurance (SHI) gains increasing importance. But so far there is no systematic presentation of this perspective in the literature. The article at first develops the sickness funds perspective from the target system of SHI, which is distinguished into (1) a normative level, (2) a positive target system of each single sickness fund and (3) a positive target system of the collective SHI-system, in which the normative level is used as gauge. Subsequently the cost valuation of the main healthcare services from the viewpoint of sickness funds are derived from the target systems: (1) physician care, (2) pharmaceuticals, (3) medical remedies and ancillary equipment, (4) in-patient care, (5) rehabilitation care and (6) sick pay. Additionally alternative calculation schemes of healthcare costs from the perspective of the sickness funds are developed which account for different data access in health economic evaluation projects. Finally the SHI-perspective is compared to the societal perspective.

Patientenschulungsprogramme in der pneumologischen Rehabilitation: Ergebnisse einer Implementationsstudie

Patient education is considered to be a major feature of medical rehabilitation in chronic disorders. While the substantial advances in the proposition of patient education programmes in in-patient health-care remain unquestioned, there are some deficits in actually performing such programmes in clinical practice. Only few clinics adhere to the protocol and recommendations for patient education. Mostly there are deviations in the actual performance of asthma education, e. g., mixing of different education schemes or using self-developed material. The reasons why clinics hesitate to use evaluated patient education programmes is still unclear. One can assume that there are problems due to organisation, structure or staff. This project aimed at observing the process of implementation of a new asthma education programme in order to identify barriers and helpful factors for the implementation. We conducted the study in three rehabilitation centres that did not use evaluated asthma education programmes. In these clinics we implemented the new education programme. After identifying the structure of the clinic before and after the implementation, interviewing the trainers and other staff members, we could assess the specific resources and barriers. We then included these aspects into recommendations for implementation. The most important barriers we found were too few staff and problems in planning the time and rooms for the programme. There was a high level of acceptance among all staff members and patients. The entire programme causes costs of 97 euro per patient. The costs at the beginning of the implementation were higher than those for the routine use.

Interdisziplinäre Zusammenarbeit als ein Merkmal erfolgreicher Rehabilitationseinrichtungen – Ergebnisse aus dem MeeR-Projekt

OBJECTIVE To determine if there is a difference between successful and less successful rehabilitation facilities concerning their extent and quality of interdisciplinary cooperation? METHODS This analysis is part of the project MeeR, that aims to identify characteristics of rehabilitation facilities related to successful rehabilitation. 6 facilities were recruited based on a quantitative analysis; 3 facilities that ranked as above average and 3 as below average in terms of their success in rehabilitating patients. Comprehensive qualitative data were collected on these 6 facilities. RESULTS In above average rehabilitation facilities, the extent of interdisciplinary cooperation was higher than in below average facilities; the position of the medical profession was less dominant and there was a wider access to team meetings. DISCUSSION Promotion of interdisciplinary cooperation is an important component for the improvement of the success of rehabilitation facilities.

Post-Rehabilitation Care in the Context of Cardiac Rehabilitation - Aspects of Prevention and Health Promotion

PURPOSE This article presents a literature review on post-rehabilitation care focussing on preventive and health promotion aspects set out on the example of coronary heart disease. Selected studies and programmes for intensified aftercare are analyzed as to whether and to what extent preventive and health promotion aspects are integrated in post-rehabilitation care. METHODS The analysis includes a stock-taking of practice concepts and evaluation studies on aftercare programmes in cardiac rehabilitation in Germany. Presented is an overview of the aftercare programmes in place based on a comprehensive, systematic literature search. RESULTS The review shows a great diversity of aftercare programmes available in cardiac rehabilitation. The findings support the assumption that aftercare offers a range of promising approaches for implementing preventive and health promotion activities due to its aim of achieving sustained rehabilitation success. So far, implementation of those activities has been insufficient. Cardiovascular risk factors such as lifestyle and psychosocial status are being considered to different degrees in those programmes in terms of intensity and frequency. Along with programmes showing a large proportion of preventive measures, only limited preventive structures are found for a majority of the aftercare concepts analyzed. Health promotion strategies are also identified in only few aftercare programmes. CONCLUSION Effectiveness studies support good results for intensified aftercare, but they often refer to only part of the relevant cardiovascular risk factors and to only medium-term observation, while long-term proof of effectiveness is scarce. A small number of programmes with positive outcomes relative to the risk profile suggest that integration of preventive and health promotion activities can contribute strongly to improving and stabilizing the effects achieved in rehabilitation. The present analysis indicates further need for research in order to verify the effects of existing post-rehabilitation programmes concerning cardiovascular risk factors and determination of the relevant target groups.

Differences in the time course of disease progression, quality of life and health service utilization in women with endometriosis

Introduction This study aimed to identify different subgroups (clusters) of patients (n = 182) based on the previously defined variables “age” and “diagnostic delay” in order to identify varying needs of (socio-)medical care. Methods Five clusters were identified by two-step cluster analysis (SPSS 23.0). The mean values for parameters of quality of life, time course of disease progression and health service utilization were compared by chi-square and Kruskal-Wallis H test, and tested for correlations using Spearmans correlation coefficient. Results Clusters I and II patients recognized their endometriosis symptoms at a relatively late age. The results showed a short diagnostic delay and a low subjective disease burden, although cluster I was characterized by a high level of fatigue. Cluster III results indicated that a lack of social support and comparatively long diagnostic delay were major problems in this group. The women in cluster IV had the worst quality-of-life scores and a below-average utilization of services. Statistical analysis showed a significant association between an early age of onset of endometriosis symptoms and a very long delay in diagnosis. These women perceived their menstrual symptoms as “normal” or as “hypochondria”. Cluster V patients were mainly concerned about maintaining their work ability and employment. Conclusions In gynecological practice, special attention should be given to the very young women, as the early onset of endometriosis symptoms and a long delay in diagnosis may indicate the risk of an unfavorable course of the patients medical and socio-medical history over time.