Comparing an in-person workshop and a postal Delphi survey for involving health service users in health care and health research prioritization.

INTRODUCTION: To involve health service users in health care and health research priority setting, different methods exist. Which method is most suitable under which circumstances is unknown. We compared a postal Delphi survey and an in-person workshop to involve health service users in priority settings for rehabilitative care and research in Germany. METHODS: One hundred and eighty-four former rehabilitants were randomly assigned to a postal Delphi survey (n = 152) or an in-person workshop (n = 32). Two hundred and seventy-six employees in rehabilitation were also invited to the Delphi Survey. The methodological comparison refers only to the sample of rehabilitants. Within each method, the participants agreed on the top 10 priorities for practice improvement and research in rehabilitative care. The priorities were compared descriptively. Participants' satisfaction was measured with the Public and Patient Engagement Evaluation Tool. The usability of both methods was compared based on the effort, time and material costs required for implementation. RESULTS: Seventy-five former rehabilitants and 41 employees in rehabilitation completed both Delphi survey rounds. Eleven former rehabilitants participated in the in-person workshop. Priorities for practice improvement showed a high degree of overlap between both methods whereas research priorities differed greatly. Participants of the in-person workshop felt significantly better prepared, more listened to and more likely to feel that different views on the topics were discussed. Participants of the Delphi survey expressed difficulties in understanding all survey questions. The Delphi survey was more elaborate in preparation and implementation but caused lower material costs. CONCLUSION: The differences in research priorities between the two methods could be due to the different samples, differences in the individual interests of participants or differences in the prioritization process. In-person workshops seem to be more appropriate for complex topics, where clarifications of questions and deeper discussions are needed. Delphi surveys seem to be more suitable for easily understandable topics, larger sample sizes and when fewer financial resources are available. PATIENT OR PUBLIC CONTRIBUTION: The different study phases were supported by employees in rehabilitation and former rehabilitants (e.g., developing study documents, and interpreting results).

"Finding Common Ground" - Impact of a Complex Intervention on Collaboration in Augmentative and Alternative Communication Care of People without Natural Speech.

Purpose: Many care settings are characterized by collaboration between a variety of stakeholders. People without natural speech who rely on augmentative and alternative communication (AAC) are often strongly dependent on the involved stakeholders and collaboration among them. Since collaboration can be challenged by many barriers, this study examines the impact of a complex intervention on collaboration in AAC care. Methods: In a quasi-experimental mixed methods intervention study which include AAC training, AAC therapy and case management, caregivers of AAC users were surveyed at 3 time points to assess collaboration and case management in the intervention versus comparison group. In addition, semi-structured focus group interviews were conducted with caregivers in the intervention group. Quantitative data were analyzed descriptively and by comparison of means. Qualitative data were analyzed using qualitative content analysis. Results: The Mann-Whitney U-test showed significantly better collaboration in the intervention group with stakeholders that are more actively involved in AAC care, such as schools (p=0.026) and residential or social facilities (p=0.010), but not with passive stakeholders such as health insurance companies. Most aspects of case management were rated significantly better in the intervention group (p<0.001). The focus group results show mainly positive changes in collaboration with the active stakeholders, such as more commitment and openness toward AAC. Conclusion: The results show a positive impact of the intervention on the collaboration between stakeholders involved in AAC care - especially with active stakeholders. In particular, the organization of care and the accompanying case management by the AAC consultation centers seem to positively affect collaboration.

Participation preferences of health service users in health care decision-making regarding rehabilitative care in Germany-A cross-sectional study.

BACKGROUND: Involving patients and citizens in health care decision-making is considered increasingly important in Germany. Participatory structures have been implemented, especially in rehabilitative care. However, it is unknown whether and to what extent German patients and citizens want to participate in decisions that exceed their own medical treatment. OBJECTIVE: This study aimed to survey participation preferences and associated factors of health service users in decisions regarding rehabilitative care at micro, meso and macro levels. METHODS: A questionnaire was sent to 3872 former rehabilitants. We collected participation preferences using the Control Preference Scale or an adapted form. Possible influencing factors were examined using logistic regression models. RESULTS: The response rate was 5.7% (n = 217). At all decision-making levels, joint decision-making was preferred. At the macro level, preferences for actively participating were the highest. Preferences were significantly interrelated between decision-making levels. At the micro level, an orthopaedic indication significantly decreased the desire for participation compared to psychosomatic indications (odds ratio = 0.44, p = .019). DISCUSSION: Participants wanted to be equally involved in decision-making as experts. Higher preferences for active participation at the macro level might be due to dissatisfaction with the current health care organisation and lack of trust in politicians. Compared to the general public, our study sample was older (73.3% between 50 and 69 years) and more often chronically ill-factors associated with increased participation preferences in the literature. CONCLUSION: Contrary to the identified preferences, participation opportunities in the German health care system are rare. Further research on participation preferences and structures that enable meaningful involvement are needed.

Routine use of patient reported outcome measures (PROMs) for improving treatment of common mental health disorders in adults.

BACKGROUND: Routine outcome monitoring of common mental health disorders (CMHDs), using patient reported outcome measures (PROMs), has been promoted across primary care, psychological therapy and multidisciplinary mental health care settings, but is likely to be costly, given the high prevalence of CMHDs. There has been no systematic review of the use of PROMs in routine outcome monitoring of CMHDs across these three settings. OBJECTIVES: To assess the effects of routine measurement and feedback of the results of PROMs during the management of CMHDs in 1) improving the outcome of CMHDs; and 2) in changing the management of CMHDs. SEARCH METHODS: We searched the Cochrane Depression Anxiety and Neurosis group specialised controlled trials register (CCDANCTR-Studies and CCDANCTR-References), the Oxford University PROMS Bibliography (2002-5), Ovid PsycINFO, Web of Science, The Cochrane Library, and International trial registries, initially to 30 May 2014, and updated to 18 May 2015. SELECTION CRITERIA: We selected cluster and individually randomised controlled trials (RCTs) including participants with CMHDs aged 18 years and over, in which the results of PROMs were fed back to treating clinicians, or both clinicians and patients. We excluded RCTs in child and adolescent treatment settings, and those in which more than 10% of participants had diagnoses of eating disorders, psychoses, substance use disorders, learning disorders or dementia. DATA COLLECTION AND ANALYSIS: At least two authors independently identified eligible trials, assessed trial quality, and extracted data. We conducted meta-analysis across studies, pooling outcome measures which were sufficiently similar to each other to justify pooling. MAIN RESULTS: We included 17 studies involving 8787 participants: nine in multidisciplinary mental health care, six in psychological therapy settings, and two in primary care. Pooling of outcome data to provide a summary estimate of effect across studies was possible only for those studies using the compound Outcome Questionnaire (OQ-45) or Outcome Rating System (ORS) PROMs, which were all conducted in multidisciplinary mental health care or psychological therapy settings, because both primary care studies identified used single symptom outcome measures, which were not directly comparable to the OQ-45 or ORS.Meta-analysis of 12 studies including 3696 participants using these PROMs found no evidence of a difference in outcome in terms of symptoms, between feedback and no-feedback groups (standardised mean difference (SMD) -0.07, 95% confidence interval (CI) -0.16 to 0.01; P value = 0.10). The evidence for this comparison was graded as low quality however, as all included studies were considered at high risk of bias, in most cases due to inadequate blinding of assessors and significant attrition at follow-up.Quality of life was reported in only two studies, social functioning in one, and costs in none. Information on adverse events (thoughts of self-harm or suicide) was collected in one study, but differences between arms were not reported.It was not possible to pool data on changes in drug treatment or referrals as only two studies reported these. Meta-analysis of seven studies including 2608 participants found no evidence of a difference in management of CMHDs between feedback and no-feedback groups, in terms of the number of treatment sessions received (mean difference (MD) -0.02 sessions, 95% CI -0.42 to 0.39; P value = 0.93). However, the evidence for this comparison was also graded as low quality. AUTHORS' CONCLUSIONS: We found insufficient evidence to support the use of routine outcome monitoring using PROMs in the treatment of CMHDs, in terms of improving patient outcomes or in improving management. The findings are subject to considerable uncertainty however, due to the high risk of bias in the large majority of trials meeting the inclusion criteria, which means further research is very likely to have an important impact on the estimate of effect and is likely to change the estimate. More research of better quality is therefore required, particularly in primary care where most CMHDs are treated.Future research should address issues of blinding of assessors and attrition, and measure a range of relevant symptom outcomes, as well as possible harmful effects of monitoring, health-related quality of life, social functioning, and costs. Studies should include people treated with drugs as well as psychological therapies, and should follow them up for longer than six months.

Development of an ICF-based core set of activities and participation for patients with mental disorders: an approach based upon data.

OBJECTIVE: To use data and patient involvement to identify categories within the International Classification of Functioning, Disability and Health (ICF) component activities and participation relevant for patients with affective, somatoform, anxiety and adjustment disorders. DESIGN: The first step was to identify systematically, outcome instruments used in randomized controlled trials, to relate item content to the ICF. Then four patient focus group discussions (n = 21 participants) were conducted, and finally an expert panel (n = 11 participants) was used to identify the most relevant categories in therapy settings. PARTICIPANTS: Focus groups: inpatient psychotherapy patients. Expert panel: clinicians, stakeholders, patient representative. RESULTS: In the literature search, 313 measures were identified, which included 1562 meaningful concepts (separate content units). These were allocated to ICF categories that were validated and complemented in focus groups and by an expert panel. The resulting core set includes 27 categories related to the nine chapters of the ICF component activities and participation. CONCLUSIONS: A core set of items, set within the World Health Organization ICF and relevant to the treatment of people with affective, somatoform, anxiety and adjustment disorders, has been developed based on existing evidence.