Attitudes and experiences of cancer patients toward the provision of audio recordings of their own medical encounter: a cross-sectional online survey.

Background: The provision of audio recordings of their own medical encounters to patients, termed consultation recordings, has demonstrated promising benefits, particularly in addressing information needs of cancer patients. While this intervention has been explored globally, there is limited research specific to Germany. This study investigates the attitudes and experiences of cancer patients in Germany toward consultation recordings. Methods: We conducted a nationwide cross-sectional quantitative online survey, informed by semi-structured interviews with cancer patients. The survey assessed participants' attitudes, experiences and desire for consultation recordings in the future. The data was analyzed using descriptive statistics and subgroup analyses. Results: A total of 287 adult cancer patients participated. An overwhelming majority (92%) expressed a (very) positive attitude. Overall, participants strongly endorsed the anticipated benefits of the intervention, such as improved recall and enhanced understanding. Some participants expressed concerns that physicians might feel pressured and could become more reserved in their interactions with the use of such recordings. While a small proportion (5%) had prior experience with audio recording medical encounters, the majority (92%) expressed interest in having consultation recordings in the future. Discussion: We observed positive attitudes of cancer patients in Germany toward consultation recordings, paralleling international research findings. Despite limited experiences, participants acknowledged the potential benefits of the intervention, particularly related to recalling and comprehending information from medical encounters. Our findings suggest that the potential of the intervention is currently underutilized in German cancer care. While acknowledging the possibility of a positive bias in our results, we conclude that this study represents an initial exploration of the intervention's potential within the German cancer care context, laying the groundwork for its further evaluation.

Effects of a shared decision-making implementation programme on patient-centred communication in oncology-Secondary analysis of a randomised controlled trial.

BACKGROUND: There is a need for better implementation of patient-centred (PC) communication and shared decision-making (SDM) in routine cancer care. OBJECTIVE: The aim of this study was to assess whether a programme to implement SDM in oncology had effects on PC communication in clinical encounters. DESIGN: This study constitutes a secondary analysis of data derived from an implementation trial applying a stepped wedge design that, among other strategies, incorporated training and coaching to enhance the PC communication skills of physicians. SETTING AND PARTICIPANTS: We analysed audio recordings of clinical encounters collected in three departments of a comprehensive cancer centre in Germany before and after rolling out the implementation programme. MAIN VARIABLES STUDIED: We assessed the PC communication skills of physicians. MAIN OUTCOME MEASURES: Each recording was rated by two researchers using the German version of the Four Habits Coding Scheme (4HCS), an observer-based measure of PC communication. Interrater reliability of the outcome measure was acceptable but moderate. Demographic data of patients participating in audio recordings were analysed. METHODS: Data were analysed using descriptive statistics and linear mixed-effects models. RESULTS: In total, 146 encounters, 74 before and 72 after implementation, were evaluated. The mean age of patients was 57.1 years (SD = 13.8), 70.3% were female, the largest portion of patients had medium formal education (32.4%) and were (self-) employed (37.8%). No statistically significant effect of the implementation programme on the physicians' PC communication skills was found. DISCUSSION: The results indicate that the investigated programme to implement SDM in oncology, including training and coaching, had no effects on PC communication in clinical encounters. These results are in contrast to other studies that report the effects of specific training or coaching on PC communication. Reasons for the lack of effect include the short duration of our training compared to other studies, limited reliability and moderate interrater reliability of the 4HCS scale, limited reach of the intervention programme as well as the inclusion of physicians regardless of their exposure to the interventions. CONCLUSION: Further research is needed to develop implementation strategies that improve physicians' PC communication skills. PATIENT CONTRIBUTION: Data on patients and clinical encounters with patients and physicians were analysed. There was no other patient or public involvement.

Major influencing factors on routine implementation of shared decision-making in cancer care: qualitative process evaluation of a stepped-wedge cluster randomized trial.

BACKGROUND: Shared decision-making (SDM) is highly relevant in oncology but rarely implemented in routine care. In a stepped-wedge cluster randomized implementation trial, the outcome evaluation of a theoretically and empirically based multi-component SDM implementation program did not show a statistically significant effect on patient-reported SDM uptake. Within this SDM implementation trial, a thorough a priori planned process evaluation was conducted. Thus, the aim of this study was to investigate factors influencing SDM implementation in the context of a multi-component SDM implementation program. METHODS: We conducted qualitative process evaluation of a stepped-wedge SDM implementation trial. Qualitative data included interviews with nurses and physicians of participating departments, field notes by the study team, and meeting minutes. Data were analyzed via deductive and inductive qualitative content analysis on basis of the Consolidated Framework for Implementation Research (CFIR). RESULTS: Transcripts of 107 interviews with 126 nurses and physicians, 304 pages of field note documentation, and 125 pages of meeting minutes were analyzed. Major factors influencing SDM implementation were found for all domains of the CFIR: a) four regarding characteristics of the individuals involved (e.g., perceived personal relevance, individual motivation to change), b) eleven regarding the inner setting (e.g., leadership engagement, networks and communication, available resources, compatibility with clinical practice), c) two regarding the outer setting (e.g., culture of health care delivery), d) eight regarding characteristics of the intervention (e.g., relative advantage, adaptability), and e) three regarding the implementation process (e.g., integration into existing structures). Furthermore, we found strong interrelations between several of the influencing factors within and between domains. CONCLUSIONS: This comprehensive process evaluation complements the outcome evaluation of the SDM implementation trial and adds to its interpretation. The identified influencing factors can be used for planning, conducting, and evaluating SDM implementation in the future. TRIAL REGISTRATION: clinicaltrials.gov, NCT03393351, registered 8 January 2018, https://clinicaltrials.gov/ct2/show/NCT03393351.

Moving towards patient-centered care and shared decision-making in Germany.

The main focus of this paper is to describe the development and current state of policy, research and implementation of patient-centered care (PCC) and shared decision-making (SDM) in Germany. What is the current state in health policy? Since 2013, the Law on Patients' Rights has standardized all rights and responsibilities regarding medical care for patients in Germany. This comprises the right to informed decisions, comprehensive and comprehensible information, and decisions based on a clinician-patient partnership. In addition, reports and action plans such as the German Ethics Council's report on patient well-being, the National Health Literacy Action Plan, or the National Cancer Plan emphasize and foster PCC and SDM on a policy level. There are a number of public organizations in Germany that support PCC and SDM. How are patients and the public involved in health policy and research? Publishers and funding agencies increasingly demand patient and public involvement. Numerous initiatives and organizations are involved in publicizing ways to engage patients and the public. Also, an increasing number of public and research institutions have established patient advisory boards. How is PCC and SDM taught? Great progress has been made in introducing SDM into the curricula of medical schools and other health care providers' (HCPs) schools (e.g., nursing, physical therapy). What is the German research agenda? The German government and other public institutions have constantly funded research programs in which PCC and SDM are important topics. This yielded several large-scale funding initiatives and helped to develop SDM training programs for HCPs in different fields of health care and information materials. Recently, two implementation studies on SDM have been conducted. What is the current uptake of PCC and SDM in routine care, and what implementation efforts are underway? Compared to the last country report from 2017, PCC and SDM efforts in policy, research and education have been intensified. However, many steps are still needed to reliably implement SDM in routine care in Germany. Specifically, the further development and uptake of decision tools and countrywide SDM trainings for HCPs require further efforts. Nevertheless, an increasing number of decision support tools - primarily with support from health insurance funds and other public agencies - are to be implemented in routine care. Also, recent implementation efforts are promising. For example, reimbursement by health insurance companies of hospital-wide SDM implementation is being piloted. A necessary next step is to nationally coordinate the gathering and provision of the many PCC and SDM resources available.

Development and content validity of the Experienced Patient-Centeredness Questionnaire (EPAT)-A best practice example for generating patient-reported measures from qualitative data.

INTRODUCTION: To effectively foster patient-centeredness (PC), it is crucial to measure its implementation. So far, there is no German measure to assess PC comprehensively. The aim of this study is to develop and select items for the Experienced Patient-Centeredness (EPAT) Questionnaire, a patient-reported experience measure (PREM). The EPAT intends to assess PC from the perspective of adult patients treated for different chronic diseases in inpatient and outpatient settings in Germany. Furthermore, we aim at providing a best-practice example for developing PREMs from qualitative data. METHODS: The development process comprised a three-phase mixed-method design: (1) preparation, (2) item generation and (3) item selection and testing of content validity. We generated items using qualitative content analysis based on information from focus groups, key informant interviews and literature search. We selected items using relevance rating and cognitive interviews. Participants were patients from four chronic disease groups (cancer, cardiovascular disease, mental disorder, musculoskeletal disorder) and healthcare experts (e.g., clinicians, researchers, patient representatives). RESULTS: We conducted six focus groups with a total of 40 patients, key informant interviews with 10 experts and identified 48 PREMs from international literature. After team discussion, we reached a preliminary pool of 152 items. We conducted a relevance rating with 32 experts and 34 cognitive interviews with 21 patients. We selected 125 items assessing 16 dimensions of PC and showed high relevance and comprehensibility. CONCLUSIONS: The EPAT questionnaire is currently undergoing psychometric testing. The transparent step-by-step report provides a best practice example that other researchers may consider for developing PREMs. Integrating literature and experts with a strong focus on patient feedback ensured good content validity. The EPAT questionnaire will be helpful in assessing PC in routine clinical practice in inpatient and outpatient settings for research and quality improvement. PATIENT OR PUBLIC CONTRIBUTION: Patients were not involved as active members of the research team. While developing the funding proposal, we informally reached out to several patient organizations who all gave us positive feedback on the study aims, thereby confirming their relevance. Those patient organizations endorsed the funding proposal with formal letters of support and supported recruitment by disseminating advertisements for study participation.

Evaluation of a program for routine implementation of shared decision-making in cancer care: results of a stepped wedge cluster randomized trial.

BACKGROUND: Shared decision-making (SDM) is preferred by many patients in cancer care. However, despite scientific evidence and promotion by health policy makers, SDM implementation in routine health care lags behind. This study aimed to evaluate an empirically and theoretically grounded implementation program for SDM in cancer care. METHODS: In a stepped wedge design, three departments of a comprehensive cancer center sequentially received the implementation program in a randomized order. It included six components: training for health care professionals (HCPs), individual coaching for physicians, patient activation intervention, patient information material/decision aids, revision of quality management documents, and reflection on multidisciplinary team meetings (MDTMs). Outcome evaluation comprised four measurement waves. The primary endpoint was patient-reported SDM uptake using the 9-item Shared Decision Making Questionnaire. Several secondary implementation outcomes were assessed. A mixed-methods process evaluation was conducted to evaluate reach and fidelity. Data were analyzed using mixed linear models, qualitative content analysis, and descriptive statistics. RESULTS: A total of 2,128 patient questionnaires, 559 questionnaires from 408 HCPs, 132 audio recordings of clinical encounters, and 842 case discussions from 66 MDTMs were evaluated. There was no statistically significant improvement in the primary endpoint SDM uptake. Patients in the intervention condition were more likely to experience shared or patient-lead decision-making than in the control condition (d=0.24). HCPs in the intervention condition reported more knowledge about SDM than in the control condition (d = 0.50). In MDTMs the quality of psycho-social information was lower in the intervention than in the control condition (d = - 0.48). Further secondary outcomes did not differ statistically significantly between conditions. All components were implemented in all departments, but reach was limited (e.g., training of 44% of eligible HCPs) and several adaptations occurred (e.g., reduced dose of coaching). CONCLUSIONS: The process evaluation provides possible explanations for the lack of statistically significant effects in the primary and most of the secondary outcomes. Low reach and adaptations, particularly in dose, may explain the results. Other or more intensive approaches are needed for successful department-wide implementation of SDM in routine cancer care. Further research is needed to understand factors influencing implementation of SDM in cancer care. TRIAL REGISTRATION: clinicaltrials.gov, NCT03393351 , registered 8 January 2018.

Translation and psychometric evaluation of the German version of the Organisational Readiness for Implementing Change measure (ORIC): a cross-sectional study.

OBJECTIVES: To translate the Organisational Readiness for Implementing Change measure into German and assess its psychometric properties. DESIGN: Cross-sectional psychometric study based on secondary analysis of baseline data from a shared decision-making implementation study. SETTING: Three departments within one academic cancer centre in Hamburg, Germany. PARTICIPANTS: For comprehensibility assessment of the translated ORIC version, we conducted cognitive interviews with healthcare professionals (HCPs, n=11). Afterwards, HCPs (n=230) filled out the measure. PRIMARY AND SECONDARY OUTCOME MEASURES: The original English version of the ORIC was translated into German using a team translation protocol. Based on comprehensibility assessment via cognitive interviews with HCPs, the translated version was revised. We analysed acceptance (completion rate), factorial structure (exploratory factor analysis (EFA), confirmatory factor analysis (CFA), model fit), item characteristics (item difficulties, corrected item-total correlations, inter-item correlations) and internal consistency (Cronbach's α). RESULTS: Translation and cognitive testing of the German ORIC was successful except for item 10, which showed low comprehensibility as part of content validity in cognitive interviews. Completion rate was >97%. EFA and CFA provided a one-factorial structure. Item difficulties ranged between 55.98 and 65.32, corrected item-total-correlation ranged between 0.665 and 0.774, inter-item correlations ranged between 0.434 and 0.723 and Cronbach's α was 0.93. CONCLUSIONS: The German ORIC is a reliable measure with high completion rates and satisfying psychometric properties. A one-factorial structure of the German ORIC was confirmed. Item 10 showed limited comprehensibility and therefore reduces content validity of the measure. The German ORIC can be used to analyse organisational readiness for change as a precursor for implementation success of various interventions.

Cancer patients' preferred and perceived level of involvement in treatment decision-making: an epidemiological study.

Background: We aimed to analyze preferred and perceived levels of patients' involvement in treatment decision-making in a representative sample of cancer patients.Material and Methods: We conducted a multicenter, epidemiological cross-sectional study with a stratified random sample based on the incidence of cancer diagnoses in Germany. Data were collected between January 2008 and December 2010. Analyses were undertaken between 2017 and 2019. We included 5889 adult cancer patients across all cancer entities and disease stages from 30 acute care hospitals, outpatient facilities, and cancer rehabilitation clinics in five regions in Germany. We used the Control Preferences Scale to assess the preferred level of involvement and the nine-item Shared Decision-Making Questionnaire to assess the perceived level of involvement.Results: About 4020 patients (mean age of 58 years, 51% female) completed the survey. Response rate was 68.3%. About a third each preferred patient-led, shared, or physician-led decision-making. About 50.7% perceived high levels, about a quarter each reported moderate (26.0%) or low (24.3%) levels of shared decision-making. Sex, age, relationship status, education, health care setting, and tumor entity were linked to preferred and/or perceived decision-making. Of those patients who preferred active involvement, about 50% perceived high levels of shared decision-making.Conclusion: The majority of patients with cancer wanted to be involved in medical decisions. Many patients perceived a high level of shared decision-making. However, many patients' level of involvement did not fit their preference. This study provides a solid basis for efforts to improve shared decision-making in German cancer care.

Assessing the relevance and implementation of patient-centredness from the patients' perspective in Germany: results of a Delphi study.

OBJECTIVE: Patient-centredness (PC) has particularly grown in relevance in health services research as well as in politics and there has been much research on its conceptualisation. However, conceptual work neglected the patients' perspective. Thus, it remains unclear which dimensions of PC matter most to patients. This study aims to assess relevance and current degree of implementation of PC from the perspective of chronically ill patients in Germany. METHODS: We conducted a Delphi study. Patients were recruited throughout Germany using community-based strategies (eg, newspapers and support groups). In round 1, patients rated relevance and implementation of 15 dimensions of PC anonymously. In round 2, patients received results of round 1 and were asked to re-rate their own results. Participants had to have at least one of the following chronic diseases: cancer, cardiovascular disease, mental disorder or musculoskeletal disorder. Furthermore, patients had to be at least 18 years old and had to give informed consent prior to participation. RESULTS: 226 patients participated in round 1, and 214 patients in round 2. In both rounds, all 15 dimensions were rated highly relevant, but currently insufficiently implemented. Most relevant dimensions included 'patient safety', 'access to care' and 'patient information'. Due to small sizes of subsamples between chronic disease groups, differences could not be computed. For the other subgroups (eg, single disease vs multi-morbidity), there were no major differences. CONCLUSION: This is one of the first studies assessing PC from patients' perspective in Germany. We showed that patients consider every dimension of PC relevant, but currently not well implemented. Our results can be used to foster PC healthcare delivery and to develop patient-reported experience measures to assess PC of healthcare in Germany.

Adaptation and qualitative evaluation of encounter decision aids in breast cancer care.

PURPOSE: Shared decision-making is currently not widely implemented in breast cancer care. Encounter decision aids support shared decision-making by helping patients and physicians compare treatment options. So far, little was known about adaptation needs for translated encounter decision aids, and encounter decision aids for breast cancer treatments were not available in Germany. This study aimed to adapt and evaluate the implementation of two encounter decision aids on breast cancer treatments in routine care. METHODS: We conducted a multi-phase qualitative study: (1) translation of two breast cancer Option Grid™ decision aids; comparison to national clinical standards; cognitive interviews to test patients' understanding; (2) focus groups to assess acceptability; (3) testing in routine care using participant observation. Data were analysed using qualitative content analysis. RESULTS: Physicians and patients reacted positively to the idea of encounter decision aids, and reported being interested in using them; patients were most receptive. Several adaptation cycles were necessary. Uncertainty about feasibility of using encounter decision aids in clinical settings was the main physician-reported barrier. During real-world testing (N = 77 encounters), physicians used encounter decision aids in one-third of potentially relevant encounters. However, they did not use the encounter decision aids to stimulate dialogue, which is contrary to their original scope and purpose. CONCLUSIONS: The idea of using encounter decision aids was welcomed, but more by patients than by physicians. Adaptation was a complex process and required resources. Clinicians did not follow suggested strategies for using encounter decision aids. Our study indicates that production of encounter decision aids alone will not lead to successful implementation, and has to be accompanied by training of health care providers.

Assessment of patient centredness through patient-reported experience measures (ASPIRED): protocol of a mixed-methods study.

INTRODUCTION: The impact of patient centredness (PC) in healthcare has grown over the years. However, conceptualisations of PC are heterogeneous. Existing patient-reported measures of PC have shown inconsistencies and shortcomings. This impedes the comparison of results across studies. To foster PC, it is important to know which dimensions matter most to patients and to be able to measure its current extent from the patients' perspective. This study aims (1) to assess relevance of dimensions of PC from the patients' perspective, (2) to develop and psychometrically test a core set of patient-reported experience measures (PREMs) assessing PC and (3) to investigate the feasibility of implementation of this core set in routine healthcare. METHODS AND ANALYSIS: A mixed-methods approach will be used. In phase 1, 200 patients will assess the relevance of the dimensions of PC in a Delphi study using a plain language description. In phase 2, the core set of PREMs will be developed through literature reviews, focus groups, key informant interviews and content validity ratings. The core set will be tested psychometrically in a cross-sectional study with 2000 inpatient and outpatients with different chronic conditions (ie, cancer, cardiovascular diseases, mental disorders and musculoskeletal disorders). In phase 3, the feasibility of implementation of the core set will be assessed through semistructured interviews with healthcare practitioners after piloting in routine care. Furthermore, an expert workshop will be held on how to foster implementation. ETHICS AND DISSEMINATION: The study will be carried out in accordance to the latest version of the Helsinki Declaration of the World Medical Association and principles of good scientific practice. The study was approved by the Ethics Committee of the Medical Association Hamburg, Germany (study ID: PV5724). The study results will be disseminated in scientific journals and through collaboration partners and plain language press releases.

Evaluation of a program for routine implementation of shared decision-making in cancer care: study protocol of a stepped wedge cluster randomized trial.

BACKGROUND: Shared decision-making (SDM) has become increasingly important in health care. However, despite scientific evidence, effective implementation strategies, and a prominent position on the health policy agenda, SDM is not widely implemented in routine practice so far. Therefore, we developed a program for routine implementation of SDM in oncology by conducting an analysis of the current state and a needs assessment in a pilot study based on the Consolidated Framework for Implementation Research (CFIR). Based on these results, the main aim of our current study is to evaluate the process and outcome of this theoretically and empirically grounded multicomponent implementation program designed to foster SDM in routine cancer care. METHODS: We use a stepped wedge design, a variant of the cluster randomized controlled trial. The intervention to be implemented is SDM. Three participating clinics of one comprehensive cancer center will be randomized and receive the multicomponent SDM implementation program in a time-delayed sequence. The program consists of the following strategies: (a) SDM training for health care professionals, (b) individual coaching for physicians, (c) patient activation strategy, (d) provision of patient information material and decision aids, (e) revision of the clinics' quality management documents, and (f) critical reflection of current organization of multidisciplinary team meetings. We will conduct a mixed methods outcome and process evaluation. The outcome evaluation will consist of four measurement points. The primary outcome is adoption of SDM, measured by the 9-item Shared Decision Making Questionnaire. A range of other implementation outcomes will be assessed (i.e., acceptability, readiness for implementing change, appropriateness, penetration). The implementation process will be evaluated using stakeholder interviews and field notes. This will allow adapting interventions if necessary. DISCUSSION: This study is the first large study on routine implementation of SDM conducted in German cancer care. We expect to foster implementation of SDM at the enrolled clinics. Insights gained from this study, using a theoretically and empirically grounded approach, can inform other SDM implementation studies and health policy developments, both nationally and internationally. TRIAL REGISTRATION: clinicaltrials.gov, NCT03393351 . Registered 8 January 2018.

Process quality of decision-making in multidisciplinary cancer team meetings: a structured observational study.

BACKGROUND: The quality of decision-making in multidisciplinary team meetings (MDTMs) depends on the quality of information presented and the quality of team processes. Few studies have examined these factors using a standardized approach. The aim of this study was to objectively document the processes involved in decision-making in MDTMs, document the outcomes in terms of whether a treatment recommendation was given (none vs. singular vs. multiple), and to identify factors related to type of treatment recommendation. METHODS: An adaptation of the observer rating scale Multidisciplinary Tumor Board Metric for the Observation of Decision-Making (MDT-MODe) was used to assess the quality of the presented information and team processes in MDTMs. Data was analyzed using descriptive statistics and mixed logistic regression analysis. RESULTS: N = 249 cases were observed in N = 29 MDTMs. While cancer-specific medical information was judged to be of high quality, psychosocial information and information regarding patient views were considered to be of low quality. In 25% of the cases no, in 64% one, and in 10% more than one treatment recommendations were given (1% missing data). Giving no treatment recommendation was associated with duration of case discussion, duration of the MDTM session, quality of case history, quality of radiological information, and specialization of the MDTM. Higher levels of medical and treatment uncertainty during discussions were found to be associated with a higher probability for more than one treatment recommendation. CONCLUSIONS: The quality of different aspects of information was observed to differ greatly. In general, we did not find MDTMs to be in line with the principles of patient-centered care. Recommendation outcome varied substantially between different specializations of MDTMs. The quality of certain information was associated with the recommendation outcome. Uncertainty during discussions was related to more than one recommendation being considered. Time constraints were found to play an important role. Some of those aspects seem modifiable, which offers possibilities for the reorganization of MDTMs.

How are decisions made in cancer care? A qualitative study using participant observation of current practice.

OBJECTIVES: Shared decision-making has continuously gained importance over the last years. However, few studies have investigated the current state of shared decision-making implementation in routine cancer care. This study aimed to investigate how treatment decisions are made in routine cancer care and to explore barriers and facilitators to shared decision-making using an observational approach (three independent observers). Furthermore, the study aimed to extend the understanding of current decision-making processes beyond the dyadic physician-patient interaction. DESIGN: Cross-sectional qualitative study using participant observation with semistructured field notes, which were analysed using qualitative content analysis as described by Hsieh and Shannon. SETTING AND PARTICIPANTS: Field notes from participant observations were collected at n=54 outpatient consultations and during two 1-week-long observations at two inpatient wards in different clinics of one comprehensive cancer centre in Germany. RESULTS: Most of the time, either one physician alone or a group of physicians made the treatment decisions. Patients were seldom actively involved. Patients who were 'active' (ie, asked questions, demanded participation, opposed treatment recommendations) facilitated shared decision-making. Time pressure, frequent alternation of responsible physicians and poor coordination of care were the main observed barriers for shared decision-making. We found high variation in decision-making behaviour between different physicians as well as the same physician with different patients. CONCLUSION: Most of the time physicians made the treatment decisions. Shared decision-making was very rarely implemented in current routine cancer care. The entire decision-making process was not observed to follow the principles of shared decision-making. However, some aspects of shared decision-making were occasionally incorporated. Individual as well as organisational factors were found to influence the degree of shared decision-making. If future routine cancer care wishes to follow the principles of shared decision-making, strategies are needed to foster shared decision-making in routine cancer care.

What do stakeholders need to implement shared decision making in routine cancer care? A qualitative needs assessment.

BACKGROUND: Shared decision making (SDM) is particularly relevant in oncology, where complex treatment options with varying side effects may lead to meaningful changes in the patient's quality of life. For several years, health policies have called for the implementation of SDM, but SDM remains poorly implemented in routine clinical practice. Implementation science has highlighted the importance of assessing stakeholders' needs to inform the development of implementation programs. Thus, the aim of the present study was to assess different stakeholders' needs regarding the implementation of SDM in routine care. MATERIAL AND METHODS: A qualitative study using focus groups and interviews was conducted. Focus groups were carried out with junior physicians, senior physicians, nurses and other healthcare providers (HPCs) (e.g. psycho-oncologists, physiotherapists), patients and family members. Head physicians as well as other HPCs in management positions were interviewed. Audiotapes of focus groups and interviews were transcribed verbatim and analyzed using content analysis. RESULTS: Six focus groups with a total of n = 42 stakeholders as well as n = 17 interviews were conducted. Focus groups and interviews revealed five main categories of needs to be fulfilled in order to achieve a better implementation of SDM in routine cancer care: 1) changes in communication, 2) involvement of other parties, 3) a trustful patient-physician relationship, 4) culture change and 5) structural changes. Stakeholders discussed four clusters of intervention strategies that could foster the implementation of SDM in routine cancer care: 1) clinician-mediated interventions, 2) patient-mediated interventions, 3) provision of patient information material and 4) the establishment of a patient advocate. CONCLUSION: Study results show that stakeholders voiced a diversity of needs to foster implementation of SDM in routine cancer care, of which some can be directly addressed by intervention strategies. Present results can be used to develop an implementation program to foster SDM in routine cancer care.

Shared Decision-Making in Oncology - A Qualitative Analysis of Healthcare Providers' Views on Current Practice.

BACKGROUND: Despite an increased awareness of shared decision-making (SDM) and its prominent position on the health policy agenda, its implementation in routine care remains a challenge in Germany. In order to overcome this challenge, it is important to understand healthcare providers' views regarding SDM and to take their perspectives and opinions into account in the development of an implementation program. The present study aimed at exploring a) the attitudes of different healthcare providers regarding SDM in oncology and b) their experiences with treatment decisions in daily practice. MATERIAL AND METHODS: A qualitative study was conducted using focus groups and individual interviews with different healthcare providers at the University Cancer Center Hamburg, Germany. Focus groups and interviews were audio-recorded, transcribed and analyzed using conventional content analysis and descriptive statistics. RESULTS: N = 4 focus groups with a total of N = 25 participants and N = 17 individual interviews were conducted. Attitudes regarding SDM varied greatly between the different participants, especially concerning the definition of SDM, the attitude towards the degree of patient involvement in decision-making and assumptions about when SDM should take place. Experiences on how treatment decisions are currently made varied. Negative experiences included time and structural constraints, and a lack of (multidisciplinary) communication. Positive experiences comprised informed patients, involvement of relatives and a good physician-patient relationship. CONCLUSION: The results show that German healthcare providers in oncology have a range of attitudes that currently function as barriers towards the implementation of SDM. Also, their experiences on how decision-making is currently done reveal difficulties in actively involving patients in decision-making processes. It will be crucial to take these attitudes and experiences seriously and to subsequently disentangle existing misconceptions in future implementation programs.

In Absentia: An Exploratory Study of How Patients Are Considered in Multidisciplinary Cancer Team Meetings.

BACKGROUND: Multidisciplinary team meetings and shared decision-making are potential means of delivering patient-centred care. Not much is known about how those two paradigms fit together in cancer care. This study aimed to investigate how decisions are made in multidisciplinary team meetings and whether patient perspectives are incorporated in these decisions. MATERIALS AND METHODS: A qualitative study was conducted using non-participant observation at multidisciplinary team meetings (also called tumor boards) at the University Cancer Center Hamburg-Eppendorf, Germany. Two researchers recorded structured field notes from a total of N = 15 multidisciplinary team meetings. Data were analyzed using content analysis and descriptive statistics. RESULTS: Physicians mainly exchanged medical information and based their decision-making on this information. Individual patient characteristics or their treatment preferences were rarely considered or discussed. In the few cases where patient preferences were raised as a topic, this information did not seem to be taken into account in decision-making processes about treatment recommendations. CONCLUSION: The processes in multidisciplinary team meetings we observed did not exhibit shared decision-making. Patient perspectives were absent. If multidisciplinary team meetings wish to become more patient-centred they will have to modify their processes and find a way to include patient preferences into the decision-making process.