News in LYOL-C II

2022

Completed work areas including a short summary of results and reference to new publications
A total of 37 of 72 patients could be included in the study (control and intervention phase), of which 29 patients have already been interviewed at least 1 time.
In unit 1 (nephrology) the information sessions have taken place. All employees can now propose patients for the study. 19 employees have participated in an employee survey.
In unit 2 (gynecology), the employees have been informed about the upcoming information events; the dates have not yet been set. The first interested parties have already registered.
Interview guidelines for the qualitative survey of patients and relatives of the intervention group were presented and discussed in the research workshop of the Center for Palliative Medicine. In addition, a short quantitative questionnaire on QPS was finalized. Both instruments are intended to elicit the patient perspective and the relatives’ perspective, respectively, regarding the perceived benefit, acceptance, and actual use of the QPS. Likewise, the need for optimization of the QPS in terms of content and design is to be identified in order to take these into account for sustainable use.

Current processes/preparations
The increased staff shortage and the lower patient load due to the ongoing strike make it difficult to recruit patients for both units.
In unit 2 (gynecology), the recruitment of patients for the control group is therefore continuing for the time being.

Outlook on the next steps
The recruitment of the control group for unit 2 (gynecology) continues. The information sessions and the start of the intervention phase are expected to follow at the end of July. In advance, the first written survey of the employees will be conducted, which will be repeated 3 months later.
Interview guidelines for the focus groups with the employees of the two units will be developed.

Completed work areas including a short summary of results and reference to new publications
The recruitment phase was completed in ward 1. 19 patients could be included, of which 11 patients have already been interviewed at least once. In ward 2, 11 patients have been included so far and 10 have already been interviewed at least once.

New publications:
Kasdorf, A., Dust, G., Hamacher, S., Schippel, N., Rietz, C., Voltz, R., Strupp, J. (2022). The last year of life for patients dying from cancer vs. non‑cancer causes: a retrospective cross‑sectional survey of bereaved relatives. Supportive Care in Cancer. doi: 10.1007/s00520-022-06908-8 .

Knop, J., Dust, G., Kasdorf, A., Rietz, C., Schippel, N., Strupp, J., Voltz, R. (2022). Unsolved problems and unwanted decision-making in the last year of life: A qualitative analysis of comments from bereaved caregivers. Palliative & Supportive Care 1–9. doi:10.1017/S1478951522000165 .

Current processes/preparations
A total of 30 patients and 11 close relatives were successfully included in the control group, 19 patients and 5 close relatives from unit 1 and 11 patients and 6 close relatives from unit 2.
For unit 1, the control phase was completed at the end of March.
For unit 2, the recruitment of patients for the control group is continuing for the time being.
The increased staff shortage due to the COVID-19 pandemic makes it difficult to find dates for the information sessions to introduce staff to the intervention and also affects the recruitment of patients.
In preparation for the evaluation of the intervention, guidelines for interviews with patients and close relatives are currently being developed, as well as a short questionnaire on Question Prompt Sheets.

Outlook on the next steps
In unit 1 the information events will take place at the beginning of April. Prior to this, the first written survey of employees will be conducted, which will be repeated 3 months later.
Unit 2 is expected to follow in May 2022.

2021

Completed work areas including a short summary of results and reference to new publications
The results of the modeling phase will be presented as a poster at EAPC 2022 under the title: “Patient-centered care in the last year of life: Using co-design to develop a two-sided trigger question-based intervention in acute hospitals.”
The Question Prompt Sheet has been finalized and is in press.
A flyer for recruiting staff to wards has been finalized and is in print.

New publications: Schippel, N., Dust, G., Von Reeken, C., Voltz, R., Strupp, J., & Rietz, C. (2021). Can we determine burdensome transitions in the last year of life based on time of occurrence and frequency? An explanatory mixed-methods study. Palliative and Supportive Care, 1-9. doi:10.1017/S1478951521001395

Current processes/preparations:
Control group recruitment is ongoing. 16 patients and seven close relatives have already been included in the study. The presence of the staff on the wards has been intensified in order to increase the recruitment numbers. This has been very successful.
In preparation for the planned implementation of the intervention on the participating wards, which is expected to take place in February, materials and content for an information session are currently being finalized.
The questionnaires and materials for the survey of employees are being finalized.

Personnel changes: as of 10/1/2021, Gloria Dust has returned from parental leave and joined the LYOL-C II team as a research assistant.

Outlook on the next steps:
Control group recruitment will be completed in January/February.
Immediately afterwards, the intervention phase will begin. In connection with this, the information event on the wards and the first of two employee surveys will be carried out.

Completed work areas including a short summary of results and reference to new publications:
Another unit at the University Hospital of Cologne will be included in the study. The inclusion of the control group has already begun on the ward.
Based on the results of qualitative interviews with experts, an implementation concept for the planned MINI intervention was developed. In particular, barriers and facilitating factors for a successful intervention were identified, which were used to tailor the intervention.
At a research workshop of the Center for Palliative Medicine on May 20, 2021, the implementation concept was discussed within a team of experienced scientists.
On June 15, 2021, a meeting of the project applicants and all research assistants took place, where an implementation strategy could be consented.
A pre-test of the employee survey was carried out with an employee of the University Hospital Cologne in order to test the applicability of the questionnaire.
In addition, pre-tests were conducted with patients of the included units and the Center for Palliative Medicine to pilot the questionnaires.

New publications: Strupp, J., Kasdorf, A., Dust, G., Hower, K., Seibert, M., Werner, B., Kuntz, L., Schulz-Nieswandt, F., Meyer, I., Pfaff, H., Hellmich, M., Voltz, R., on behalf of CoRe-Net: Last Year of Life Study Cologne (LYOL-C) (Part II): study protocol of a prospective interventional mixed-methods study in acute hospitals to analyse the implementation of a trigger question and patient question prompt sheets to optimise patient-centred care BMJ Open 2021;11:e048681. doi: 10.1136/bmjopen-2021-048681

Current processes/preparations:
Since March, the control group recruitment has been running on two participating units of the University Hospital Cologne. Eight patients and four relatives were included. The baseline survey of the participants has already been completed.
Based on the results of the patients survey, patient representatives and caregivers, the intervention materials (Question Prompt Sheet) are being revised and pre-tested with patients.
In preparation for a planned information event on the participating units, materials and content are currently being developed.
The questionnaires for the survey of employees are being revised.
The study will be presented in a scientific pitch at this year’s German Conference for Health Services Research (DKVF)
Furthermore, the participation in this year’s EAPC congress and the presentation of the results from the first funding phase will be prepared.

Personnel change: Jana Frey joined the LYOL-C team as a research associate on August 1, 2021.

Publications in progress
Schippel, N., Dust, G., von Reeken, C., Voltz, R., Strupp, J., Rietz, C., on behalf of CoRe-Net (in preparation) What do care transitions in the last year of life mean to patients and relatives? An explanatory sequential mixed-methods study.

Knop, J., Dust, G., Kasdorf, A., Rietz, C., Schippel, N., Strupp, J., Voltz, R., on behalf of CoRe-Net (in preparation) Unsolved problems and unwanted decision-making in the last year of life: A qualitative analysis of comments from bereaved caregivers.

Kasdorf, A. Dust, G. Hamacher, S. Schippel, N., Rietz, C., Voltz, R., Strupp, J. (in preparation) on behalf of CoRe-Net “Where do we go to get cancer?” Non-cancer patients are disadvantaged regarding health care provision in their last year of life.

Kasdorf, A. Dust, G. Hamacher, S. Schippel, N., Rietz, C., Voltz, R., Strupp, J. (in preparation) Where do we go to get cancer? Dying in hospital is worse for non-cancer-patients. A regional cross-sectional survey of bereaved relatives’ views

Outlook on the next steps:
In the coming weeks, further preparations will be made for the start of the intervention implementation. For this purpose, the finalization of the Question Prompt Sheet is also planned next.

Completed work areas including a short summary of results and reference to new publications:
On November 4, 2020, a research workshop to discuss the guidelines was held at the Centre for Palliative Medicine. The implementation aspects of the interview and suggestions for its design were discussed.

The first work package of the study involves modelling the minimally invasive intervention (MINI, consisting of the Surprise Question, Supportive and Palliative Care Indicators Tool^TM -SPICT^TM, and Question Prompt Sheet). A total of seven providers from the medical setting (medical and nursing professionals) and three patient representatives were interviewed. Detailed insights into the care situation of patients in the last year of life were gained. In addition, an valuation of possible improvements in the identification and care of this patient group were given. Furthermore, the interviews served as an in-depth valuation of the feasibility and implementation possibilities of the planned intervention. The qualitative interviews were completed on April, 14, 2021.

In the context of the exploratory study, two selected units of the University Hospital Cologne will be accompanied interventional. To this, intensive consultations with the responsible persons of the respective units have been ongoing since the beginning of the project. A total of 72 patients will be included in these units and subsequently surveyed five times over a period of twelve months using a questionnaire.

To test the feasibility and reasonableness of the planned data collection, pre-tests of the questionnaires were carried out with clinical professionals and patients on a palliative care unit.

On March 10, 2021, the design aspects of the survey of employees were discussed at the research workshop of the Center for Palliative Medicine.

To present the study, an abstract was submitted to this year’s DKVF congress. In addition, the results of the first funding phase were submitted to the EAPC congress.

New publications: Kasdorf, A., Dust, G., Vennedey, V., Rietz, C., Polidori, M.C., Voltz, R., Strupp, J.; on behalf of the CoRe‑Net (2021). What are the risk factors for avoidable transitions in the last year of life? A qualitative exploration of professionals’ perspectives for improving care in Germany. BMC Health Serv Res, 21(147). DOI: 10.1186/s12913-021-06138-4

Current processes/preparations:
– Official start of patient inclusion for the control phase on the participating university hospital unit.
– Concretization of the implementation concept of the intervention as well as revision of the Question Prompt Sheet on basis of the qualitative interview evaluation.

Publications in progress
– Strupp, J., Kasdorf, A., Dust, G., Hower, K., Seibert, M., Werner, B., Kuntz, L., Schulz-Nieswandt, F., Meyer, I., Pfaff, H., Hellmich, M., Voltz, R., on behalf of CoRe-Net (under review by BMJ Open) Last Year of Life Study Cologne (LYOL-C) (Part II): Study protocol of a prospective interventional mixed-methods study with two arms and a pre-post design in acute hospitals to analyse the implementation of a trigger question combined with patient question prompt sheets to optimise patient-centered care
– Schippel, N., Dust, G., von Reeken, C., Voltz, R., Strupp, J., Rietz, C., on behalf of CoRe-Net (under review by Palliative & Supportive Care) What do care transitions in the last year of life mean to patients and relatives? An explanatory sequential mixed-methods study.
– Knop, J., Dust, G., Kasdorf, A., Rietz, C., Schippel, N., Strupp, J., Voltz, R., on behalf of CoRe-Net (in preparation) Unsolved problems and unwanted decision-making in the last year of life: A qualitative analysis of comments from bereaved caregivers.

Outlook on the next steps:
– Preparation of a final implementation concept and the MINI workshop, finalization of the Question Prompt Sheet
– Implementation of data collection in the control phase, preparation of the intervention phase
– Preparation of the employee survey

2020

Completed work areas including a short summary of results and reference to new publications:
In November, LYOL-C II received a positive vote from the ethics committee. The time of the evaluation of the ethics application was used to prepare the first work packages of the project, especially regarding the qualitative interviews. For this purpose, interview guidelines as well as prototypes of the material intended for the intervention were prepared in close cooperation with the OrgValue II project. A research workshop was also held at the Centre for Palliative Medicine.
Providers involved in the care of people in the last year of life as well as patient representatives will be recruited.
In addition, our intervention has been given a new name – to reflect the “minimally invasive” nature of the intervention, it has been named “MINI – Minimally INvasive Intervention”.
Currently, a study protocol of the trial is being prepared for publication.
We are also pleased to welcome Leonie Weyres as part of our team. She will support us from 01.01.2021 as a study nurse in the practical implementation of the study. We are also pleased about the active support of Buket-Dilara Cinar, who has been supporting our team as a SHK since November 2020.

New publications: Voltz, R., Dust, G., Schippel, N., On behalf of The CoRe Net Co applicants, et al. Improving regional care in the last year of life by setting up a pragmatic evidence-based Plan–Do–Study–Act cycle: results from a cross-sectional survey. BMJ Open 2020;10:e035988.
doi: 10.1136/bmjopen-2019-035988

Current processes/preparations:
With the preliminary positive vote of the ethics committee, we can now start recruiting interview partners for the qualitative interviews, which are the first part of the project. In these interviews, we will discuss possible implementation barriers of our planned intervention with patient representatives and experts in hospital care. In view of the current Corona pandemic, the interviews will not take place in the format of focus groups, but as individual interviews in an online format. If you are interested in an interview of about one hour, you can contact our research assistants directly at letztes-lebensjahr@uk-koeln.de.
Furthermore, talks are currently being held with representatives of interested wards at the University Hospital Cologne about participating in the project.
The questionnaires for the evaluation of the intervention are in their final stages and are being developed in cooperation between the LYOL-C II project and the PMV research group.
The data collection materials for the patient and relative survey have been finalised in close cooperation with all project participants, a clinical pre-test is still planned.

Outlook on the next steps:
At the beginning of 2021, the first data will be collected in the form of qualitative interviews with experts. On the basis of these, the intervention will be critically examined with regard to its feasibility and, in particular, possible barriers to implementation, in order to subsequently enable the most practical implementation possible. Furthermore, the recruitment of the control group is planned for the second quarter of 2021. The implementation of the intervention on selected wards of the University Hospital Cologne is planned for autumn 2021.

Completed work areas including a short summary of results and reference to new publications:
On 26.06.2020 a virtual practice partner event took place to present the previous project results from LYOL-C I. The participants also got an insight into the second project phase and were able to communicate their wishes and suggestions for the new project.
A vote for the LYOL-C II study was applied for at the Ethics Committee of the University Hospital of Cologne in August. The individual project partners were in close contact with each other. In addition, consultations took place in advance with the data protection officer of the University of Cologne and with the head of the ethics committee. The project has been registered provisionally with the German Clinical Trials (DRKS) and will be published when the ethics committee has given its positive vote.

New publications: LYOL-C (2020). Factsheet: The last year of life in Cologne. Cologne: Publication series of the Institute for Medical Sociology, Health Services Research and Rehabilitation Science (IMVR) at the University of Cologne.

Current processes/preparations:
At this year’s congress of the German Society for Palliative Medicine (DGP) in Wiesbaden, the LYOL-C-I project is represented with a lecture and a poster. Results on differences between patients with a tumor and non-tumor disease in relation to care in the last year of life will be presented. These results are currently also being prepared in two publications.
Currently the preparation of the intervention for LYOL-C II is in progress. A compilation of the study materials for the individual work packages is also underway. Furthermore, a publication of the study protocol in an open access journal is planned. Currently, three scientific publications from the first funding phase are undergoing a review process.

Outlook on the next steps:
The first practical work package of the study will be to conduct a focus group discussion/individual interviews with patient representatives and healthcare experts to discuss the implementation details of the intervention. Based on the findings, an intervention will be designed, which will be applied in the next step on selected wards of the University Hospital.
In order to make this intervention as practice-oriented as possible and to implement it into hospital care in a practice-oriented way, we are looking for experts from various care settings as well as patient representatives in order to exchange information with us within the framework of a qualitative survey. The data collection is planned for autumn 2020. If you are interested in an interview or participation in a focus group, you can contact Alina Kasdorf directly: letztes-lebensjahr@uk-koeln.de

Finished work areas including a short summary of results and reference to new publications:
After the successful realisation of all milestones planned in the project plan, the LYOL-C project was completed by April 4th, 2020. Currently, three scientific publications from the first phase are under review. The practice partner event planned for 26.03.2020, which was intended as a kick-off for the LYOL-C-II planning, unfortunately had to be postponed indefinitely due to the corona pandemic.

Current processes/preparations:
The LYOL-C- II subproject (Tailoring & impact of the trigger question-based Gold Standards Framework combined with Patient Question Prompt Sheets to deliver patient-centered care in hospitals) is a follow-up project of the study “Last year of life in Cologne – LYOL-C”. LYOL-C-II aims to enable patient-centered care in hospitals and to increase the patient benefit (“value”) in the last year of life through a minimally invasive intervention. Using the Gold Standard Framework established in Great Britain, a concept is being developed which will help to identify patients who are in their last year of life and therefore have a greater need for care and support. In addition, checklists for patients will be developed within the framework of this study, which will help to improve the flow of information by making it easier for patients to talk to doctors, for example. We assume that this type of intervention can help to optimise care for all those involved.

Outlook on following steps:
The first year of the project is planned for the conception of the intervention, which is planned in cooperation with OrgValue and the department for social policy and methods of qualitative social research. The first milestone will be to obtain a positive vote of the ethics committee of the University Hospital in order to guarantee data protection and ethical-moral aspects of our planned intervention. For this purpose, numerous information materials for the recruitment of patients will be prepared and materials for the conception of the intervention in focus groups will be prepared. Parallel to this, the preparation of a study protocol is planned.