Marie-Luise Dierks

The TRANSNephro-study examining a new transition model for post-kidney transplant adolescents and an analysis of the present health care: study protocol for a randomized controlled trial

BackgroundThe transition from pediatric to nephrology care is not yet a standardized procedure. The result is an increased risk of deteriorating transplant function, with the potential for premature transplant failure.Methods/DesignIn phase I of this study, we shall evaluate the current patient transition situation in all existing German pediatric and nephrology departments (n = 17), including an evaluation of the views of physicians, nurses, and psychosocial support staff regarding transition. Phase II will be a prospective, randomized study in which we compare current unstructured transition (control group) to structured transition (intervention group). The structured transition approach integrates the core elements of the Berliner TransitionsProgramm in combination with two facilitating smartphone apps. The primary endpoint of this study will be therapy adherence, as reflected by group variation coefficients of immunosuppressive agent levels. As a secondary outcome, we will compare patients’ self-reported quality of life, satisfaction of patients and their parents with each transition model, and how patient-centered healthcare components are utilized. These secondary parameters will be assessed with established instruments or with instruments developed (and pilot tested) in phase I of the project.DiscussionThe long-term goal of this work is to provide a model of structured transition from pediatric to adult care for adolescent nephrology patients, in order to improve transplant survival and patient wellbeing.Trial registrationIdentifier: Clinicaltrials.gov: ISRCTN22988897, registered on 24 April 2014).

Health and treatment priorities in patients with multimorbidity: Report on a workshop from the European General Practice Network meeting 'Research on multimorbidity in general practice'

Abstract Setting health and treatment priorities is necessary when caring for multiple and complex patient issues. This is already done in the doctorpatient consultation—yet implicitly rather than explicitly. The aim of this European General Practice Network workshop was to advance a consultation approach that deals with shared priority setting. The workshop was divided into three parts: (1) how to gain a comprehensive health overview for patients with multiple problems as a basis for priority setting; (2) how to establish priorities considering patient and doctor perspectives; and (3) how to practice a communication style that achieves shared priority setting. The workshop participants preferred to gain information on patients’ health status using documentations from patient records rather than conducting systematic assessments. The group emphasized that medical as well as everyday life problems need to be considered when determining priorities, a procedure that requires time and resources not readily available in daily practice. Existing skills for person-centred communication with patients should be applied in order to agree on priorities. Overall it became apparent how challenging it is to arrange and prioritize an array of health problems in a consultation with patients. Existing concepts augmented by innovative systematic methods may be the way forward.

Complex health care decisions with older patients in general practice: Patient-centeredness and prioritization in consultations following a geriatric assessment

OBJECTIVE To examine to what extent general practitioners in consultations after a geriatric assessment set shared health priorities with older patients experiencing multimorbidity and to what extent this was facilitated through patient-centered behavior. METHODS Observation of consultations embedded in a cluster randomized controlled trial,(1) in which 317 patients from 41 general practices received the STEP assessment followed by a care planning consultation with their GPs. GPs in the intervention group used a structured procedure for setting health (care) priorities in contrast to control GPs. A sample of 43 consultations (24 intervention; 19 control) were recorded, transcribed and analyzed with regard to priority setting and patient-centeredness. RESULTS Patient-centeredness was only moderately apparent in consultations dealing with complex care plans for older patients with multimorbidity. The shared determination of health priorities seemed unusual for both doctors and patients and was rarely practiced, albeit more frequently in intervention consultations. CONCLUSION Setting health care priorities with patients experiencing multimorbidity is ethically desirable and medically appropriate. Yet a short structured guide for doctors cannot easily achieve this. PRACTICE IMPLICATIONS More research is needed in regard to handling complex health needs of older patients. It requires a professional approach and training in patient-centered holistic care planning.

Evidence-based health information from the users' perspective - a qualitative analysis

BackgroundEvidence-based information is a precondition for informed decision-making and participation in health. There are several recommendations and definitions available on the generation and assessment of so called evidence-based health information for patients and consumers (EBHI). They stress the importance of objectively informing people about benefits and harms and any uncertainties in health-related procedures. There are also studies on the comprehensibility, relevance and user-friendliness of these informational materials. But to date there has been little research on the perceptions and cognitive reactions of users or lay people towards EBHI. The aim of our study is to define the spectrum of consumers’ reaction patterns to written EBHI in order to gain a deeper understanding of their comprehension and assumptions, as well as their informational needs and expectations.MethodsThis study is based on an external user evaluation of EBHI produced by the German Institute for Quality and Efficiency in Health Care (IQWiG), commissioned by the IQWiG. The EBHI were examined within guided group discussions, carried out with lay people. The test readers’ first impressions and their appraisal of the informational content, presentation, structure, comprehensibility and effect were gathered. Then a qualitative text analysis of 25 discussion transcripts involving 94 test readers was performed.ResultsBased on the qualitative text analysis a framework for reaction patterns was developed, comprising eight main categories: (i) interest, (ii) satisfaction, (iii) reassurance and trust, (iv) activation, (v) disinterest, (vi) dissatisfaction and disappointment, (vii) anxiety and worry, (viii) doubt.ConclusionsMany lay people are unfamiliar with core characteristics of this special information type. Two particularly critical issues are the description of insufficient evidence and the attendant absence of clear-cut recommendations. Further research is needed to examine strategies to explain the specific character of EBHI so as to minimize unintended or adverse reaction patterns. The presented framework describes the spectrum of users’ reaction patterns to EBHI. It may support existing best practice models for editing EBHI.

Development of a comprehensive list of criteria for evaluating consumer education materials on colorectal cancer screening

BackgroundAppropriate patient information materials may support the consumer’s decision to attend or not to attend colorectal cancer (CRC) screening tests (fecal occult blood test and screening colonoscopy). The aim of this study was to develop a list of criteria to assess whether written health information materials on CRC screening provide balanced, unbiased, quantified, understandable, and evidence-based health information (EBHI) about CRC and CRC screening.MethodsThe list of criteria was developed based on recommendations and assessment tools for health information in the following steps: (1) Systematic literature search in 13 electronic databases (search period: 2000–2010) and completed by an Internet search (2) Extraction of identified criteria (3) Grouping of criteria into categories and domains (4) Compilation of a manual of adequate answers derived from systematic reviews and S3 guidelines (5) Review by external experts (6) Modification (7) Final discussion with external experts.ResultsThirty-one publications on health information tools and recommendations were identified. The final list of criteria includes a total of 230 single criteria in three generic domains (formal issues, presentation and understandability, and neutrality and balance) and one CRC-specific domain. A multi-dimensional rating approach was used whenever appropriate (e.g., rating for the presence, correctness, presentation and level of evidence of information). Free text input was allowed to ensure the transparency of assessment. The answer manual proved to be essential to the rating process. Quantitative analyses can be made depending on the level and dimensions of criteria.ConclusionsThis comprehensive list of criteria clearly has a wider range of evaluation than previous assessment tools. It is not intended as a final quality assessment tool, but as a first step toward thorough evaluation of specific information materials for their adherence to EBHI requirements. This criteria list may also be used to revise leaflets and to develop evidence-based health information on CRC screening. After adjustment for different procedure-specific criteria, the list of criteria can also be applied to other cancer screening procedures.

Decision-Making of Older Patients in Context of the Doctor-Patient Relationship: A Typology Ranging from “Self-Determined” to “Doctor-Trusting” Patients

Background. This qualitative study aims to gain insight into the perceptions and experiences of older patients with regard to sharing health care decisions with their general practitioners. Patients and Methods. Thirty-four general practice patients (≥70 years) were asked about their preferences and experiences concerning shared decision making with their doctors using qualitative semistructured interviews. All interviews were analysed according to principles of content analysis. The resulting categories were then arranged into a classification grid to develop a typology of preferences for participating in decision-making processes. Results. Older patients generally preferred to make decisions concerning everyday life rather than medical decisions, which they preferred to leave to their doctors. We characterised eight different patient types based on four interdependent positions (self-determination, adherence, information seeking, and trust). Experiences of a good doctor-patient relationship were associated with trust, reliance on the doctor for information and decision making, and adherence. Conclusion. Owing to the varied patient decision-making types, it is not easy for doctors to anticipate the desired level of patient involvement. However, the decision matter and the self-determination of patients provide good starting points in preparing the ground for shared decision making. A good relationship with the doctor facilitates satisfying decision-making experiences.

Konzeption einer Studie zu sexueller Gesundheit bei in Deutschland lebenden Afrikanern

ZusammenfassungHintergrundMigranten aus Subsahara Afrika (MiSSA) machen ca. 10–15 % aller HIV-Erstdiagnosen in Deutschland aus, von denen in den letzten Jahren etwa ein Drittel vermutlich in Deutschland erworben wurde. Zur Prävalenz von Virushepatitiden (HEP) in dieser Zielgruppe liegen bisher keine Daten vor. Zudem gibt es nur punktuelle Informationen zu Wissen, Einstellungen und Verhalten von MiSSA in Bezug auf HIV/HEP und andere sexuell übertragbare Infektionen (STI). Diese Informationen wiederum sind für die Entwicklung von Präventionsmaßnahmen unabdingbar.Ziel der ArbeitZiel der Arbeit war es, ein angemessenes Studiendesign zur Erfassung der Bedarfe und Bedürfnisse von MiSSA im Bereich der HIV/HEP/STI-Prävention zu entwickeln.Material und MethodenEingesetzt wurde 1. ein strukturiertes Expertengespräch mit Schlüsselpersonen aus MiSSA-Communities, Praktikern und Forschern, die in der HIV/STI-Prävention bzw. Forschung tätig sind. Aus diesem Kreis wurde 2. eine Arbeitsgruppe gebildet, die Vorschläge für ein Studiendesign entwickelte. Diese Empfehlungen wurden 3. im Rahmen von Fokusgruppen mit MiSSA in vier deutschen Großstädten diskutiert.ErgebnisseFolgende Grundsätze wurden für den Forschungsprozess festgelegt: Der Nutzen der Forschungsergebnisse aus der Perspektive der MiSSA ist prioritär, unabdingbar ist ein partizipatives Vorgehen (Einbeziehung der Zielgruppe); Entscheidungen werden von einem Advisory Board und Community-Vertretern diskutiert. Als Studiendesign wurde eine multizentrische Befragung mit begleitendem optionalem Angebot zur niedrigschwelligen HIV/HEP/STI-Testung vorgeschlagen. Die Rekrutierung von Studienteilnehmer erfolgte durch Peer Researcher. Fragebögen wurden partizipativ entwickelt und in mehreren Sprachen angeboten. Die Teilnehmer der vier Fokusgruppen unterstützen prinzipiell das Studiendesign.SchlussfolgerungFür die Planung und Umsetzung von HIV/HEP/STI-Forschung mit MiSSA ist ein partizipatives Vorgehen unter Einbeziehung der Zielgruppen entscheidend.AbstractBackgroundMigrants from sub-Saharan Africa (MiSSA) are a relevant subgroup for HIV transmission in Germany; 10–15 % of all newly diagnosed cases are MiSSA, and of those diagnosed in recent years approximately one third acquired HIV in Germany. There is limited information on prevalence of viral hepatitis (HEP), other sexual transmitted infections (STI) and on knowledge, attitudes, behaviors and practices (KABP) regarding sexual health.ObjectivesTo gain a better understanding of MiSSAʼs HIV/HEP/STI prevention needs and to develop an appropriate study design, a research process was initiated.Materials and methodsAn expert meeting took place to define specific research needs as well as a research approach. Experts were defined as persons working in HIV/STI prevention with MiSSA, key persons from MiSSA communities, and HIV/STI researchers. A working group was established to draft a potential study design for a KABP survey of MiSSA. Recommendations of the working group were appraised by four focus groups (FG) with MiSSA in different cities.ResultsExperts defined principles for the research: participatory research approach (involvement of MiSSA in all stages of the process with decision-making powers), all decisions were evaluated by community members and an advisory board, and research should benefit MiSSA communities. The agreed research design was a multicenter KABP study on sexual health with recruitment by trained peer researchers and free and optional HIV/HEP/STI testing, which were offered to participants. Questionnaires will be available in multiple languages and multimodal administration is possible (self-completion/interview). FG results generally supported the suggested research design.ConclusionTo conduct HIV/STI/HEP research that is meaningful to MiSSA, it is crucial to involve community partners in the research process. This will help to address the specific needs of MiSSA and also assure a better reception of the study within the community.

What is important, what needs treating? How GPs perceive older patients’ multiple health problems: a mixed method research study

BackgroundGPs increasingly deal with multiple health problems of their older patients. They have to apply a hierarchical management approach that considers priorities to balance competing needs for treatment. Yet, the practice of setting individual priorities in older patients is largely unexplored. This paper analyses the GPs’ perceptions on important and unimportant health problems and how these affect their treatment.MethodsGPs appraised the importance of health problems for a purposive sample of their older patients in semi-structured interviews. Prior to the interviews, the GPs had received a list of their patients’ health problems resulting from a geriatric assessment and were asked to rate the importance of each identified problem. In the interviews the GPs subsequently explained why they considered certain health problems important or not and how this affected treatment. Data was analysed using qualitative content analysis and quantitative methods.ResultsThe problems GPs perceive as important are those that are medical and require active treatment or monitoring, or that induce empathy or awareness but cannot be assisted further. Unimportant problems are those that are well managed problems and need no further attention as well as age-related conditions or functional disabilities that provoke fatalism, or those considered outside the GPs’ responsibility. Statements of professional actions are closely linked to explanations of important problems and relate to physical problems rather than functional and social patient issues.ConclusionsGPs tend to prioritise treatable clinical conditions. Treatment approaches are, however, vague or missing for complex chronic illnesses and disabilities. Here, patient empowerment strategies are of value and need to be developed and implemented. The professional concepts of ageing and disability should not impede but rather foster treatment and care. To this end, GPs need to be able to delegate care to a functioning primary care team.Trial RegistrationGerman Trial Register (DRKS): 00000792

Communicating the Benefits and Harms of Colorectal Cancer Screening Needed for an Informed Choice: A Systematic Evaluation of Leaflets and Booklets

Objective Evidence-based health information (EBHI) can support informed choice regarding whether or not to attend colorectal cancer (CRC) screening. The present study aimed to assess if German leaflets and booklets appropriately inform consumers on the benefits and harms of CRC screening. Methods A systematic search for print media on CRC screening was performed via email enquiry and internet search. The identified documents were assessed for the presence and correctness of information on benefits and harms by two reviewers independently using a comprehensive list of criteria. Results Many of the 28 leaflets and 13 booklets identified presented unbalanced information on the benefits and harms of CRC screening: one-third did not provide any information on harms. Numeracy information was often lacking. Ten cross-language examples of common misinterpretations or basically false and misleading information were identified. Discussion Most of the CRC screening leaflets and booklets in Germany do not meet current EBHI standards. After the study, the publishers of the information materials were provided feedback, including a discussion of our findings. The results can be used to revise existing information materials or to develop new materials that provide correct, balanced, quantified, understandable and unbiased information on CRC screening.

Zufriedenheit in der Arztpraxis aus Patientenperspektive

ZusammenfassungZiel der vorliegenden Untersuchung ist die Entwicklung eines standardisierten patientenzentrierten quantitativen Instrumentes zur Messung der prozeßbezogenen Patientenzufriedenheit, daß z.B. im Rahmen eines internen Qualitätsmanagements oder im Zusammenhang mit externen Qualitätssicherungsmaßnahmen eingesetzt werden kann. Die Auswahl der Items erfolgte auf der Basis einer umfangreichen qualitativen Untersuchung, eine vorläuflge Fragebogenversion (35 Items) wurde in einer Voruntersuchung mit 2.800 Patienten aus 56 Arztpraxen (auswertbare Antworten: n= 969) eingesetzt. Nach einer vorläufigen psychometrischen Prüfung wurde das optimierte Erhebungsinstrument an 3.000 Patienten aus 60 Praxen getestet. Antworten von 1.387 Patienten (Rücklaufquote: 46%, 62% weiblich, durchschnittliches Alter:52 Jahre) lagen zur Auswertung vor. Die psychometrische Prüfung umfaßte Analysen zur faktoriellen Validität (konfirmatorische Faktorenanalyse), konvergenten und diskriminanten Validität sowie zur Reliabilität (Interne Konsistenz, Cronbach’s alpha). Das optimierte Erhebungsinstrument umfaßt vier Dimensionen: „Arzt-Patient-Interaktion” (8 Items), „Information” (8 Items), „Praxisorganisation” (4 Items) und „Fachliche Kompetenz” (3 Items). Die konfirmatorische Faktorenanalyse bestätigt die Struktur gut (GFI: 0,997). Die Reliabilität der Subskalen liegt zwischen.73 und.95. Die Korrelationen der Subskalen untereinander liegen zwischen. 76 und. 47. Alle Subskalen korrelieren positiv mit der Globaleinschätzung zur Zufriedenheit mit dem Arzt. Zusammenfassend zeigt die Prüfung des Erhebungsinstrumentes gute psychometrische Eigenschaften hinsichtlich Reliabilitdt und Validität sowie der Diskriminationsfähigkeit.AbstractThe purpose of the study was to develop and to validate a standardized patient centered quantitative instrument to assess patient satisfaction in ambulatory care, to be used i.e. in quality management and benchmarking activities. Item selection for the instrument was based on an extensive qualitative pilot study. A pre-final version (containing 35 items) has been tested with 2.800 patients from 56 ambulatory care practices (bases for analysis: n= 969). After psychometric evaluation a modified version has been tested with 3.000 patients from 60 ambulatory care physicians. Answers from 1.387 patients (response rate: 46 %, 62 % female, mean age 52 yrs.) were available for analysis. The questionnaire was validated by testing for factorial validity (confirmatory factor analysis), convergent and divergent validity as well as reliability (internal consistency, cronbachäs alpha). The final version of the questionnaire contains four dimensions: patient-physician-interaction (8 items), information (8 items), office organization(4 items), professional competence (3 Items). Confirmatory factor analysis confirms the four hypothesized dimensions perfectly (GFI: 0.997). Reliability ranged from.75 and.95. The correlation’s between the sub-scales ranges from.76 to 47, indicating that the dimensions are not fully independent. All sub-scales correlate positively with global assessments of satisfaction with the physician. With satisfactory to good results for validity and reliability testing, the final questionnaire might be used fruitfully in quality management in primary care.