The prospective evaluation results are presented at an end-user, programme designer and service provider level (Fig. 4).
Document analyses and interview with the project leader (end-users’ and programme designers’ perspectives)
Patient perspective (end-user) on the isPO project, represented by the consortium partner HKSH-BV
The HKSH-BV emphasised the importance of psycho-oncology for the care of cancer patients resulting from cooperation between different professions. Three conditions in the isPO programme were very welcome: (1) former cancer patients are trained and included as volunteer isPO onco-guides and complement the professional isPO support team with the peer support, (2) the cancer self-help is represented contractually for the first time in Germany, and (3) the management of the isPO onco-guides’ care provision is financially covered. In addition, there was a quality assurance for the care provision by isPO onco-guides through defined requirements for the certification as an isPO onco-guide. This includes a special training, a conflict of interest statement, and a commitment statement.
The overcoming of sector boundaries (in- and out-patient) is perceived as a fundamental, patient-relevant feature of the isPO programme. This ensures continuous psycho-oncological care, even in the case of a transferal from one sector to the other within medical cancer care (e.g. from in-patient to out-patient care). The clear definition of care pathways, with the deposit of necessary documents, is seen as an important measure for a high quality of care, which in turn is decisive for patient safety. Due to the development of a comprehensive care programme, the isPO programme is considered by the end-users (HKSH-BV) as sustainable.
The HKSH-BV reports that, in addition to the advisory function, other tasks were taken on during the project year. The consortium partner engaged in developing the isPO onco-guide concept, recruiting former cancer patients and training them as isPO onco-guides.
The cooperation with the other consortium partners is perceived as "close, fruitful and appreciative". The high level of commitment of all project members is valued.
Programme designer perspective on the isPO project
In order to summarise the programme's development process for each programme component, the actual working achievements are illustrated in comparison with the aims according to the project plan in additional file 3. Each objective is assigned to the corresponding working result and further activities beyond the project plan are displayed. Due to the programme’s complexity and delays in the development process, creating the isPO prototype took 15 months (10/2017–01/2019).
Care concept (C1)
The scientific basis of the care concept was developed. Consequently, the isPO care provision can be offered according to patient’s needs at different care levels (Fig. 6; see detailed description of the care concept elsewhere [15]), to which different measures and service providers are assigned.
Due to the short timeframe for the programme development, interdependencies among the consortium partners, and partially insufficient communication, the complete care concept has not been written down comprehensively at the end of the development phase. This was postponed to the start of the implementation phase.
Project & care management (C2)
A document control system was created and elucidated, as along with the necessary organisational structure for managing care in the care networks. Regular meetings with consortium partners and the steering committee were established.
Foundation and development of isPO care networks (C3)
In addition to the University Hospital Cologne, three more networks were recruited to cover a broad spectrum of different population and care structures. However, these various prerequisites lead to different states of network establishment at the end of the development phase. Based on the hospitals’ scope of care and personnel resources, it was assumed that the planned recruitment goals could be achieved whilst providing other patients with the hospitals’ regular psycho-oncological care in parallel, albeit, with significantly increased effort. Altogether, the four care networks were developed within 16 months.
Contracts & agreements (C4)
All necessary contracts and agreements for care provision have been signed. The “isPO care contract” has achieved an innovation in the German healthcare system, especially with regard to the integration and financing of psychosocial care and organisation of self-help services (isPO onco-guide).
Quality management (C5)
A beta version of the project-related quality management manual was produced. Quarterly internal care network quality circles and cross-network quality workshops were planned, aiming to involve the care networks in the optimisation process (participatory quality development approach).
Care pathways & indicators (C6)
Basic SOPs for care levels 0 to 3a (Fig. 6) and care pathways for care level 0 to 2 were modulated. The SOPs will be further elaborated, adjusted, if necessary, and finalised as part of a continuous improvement process during implementation in practice.
IT-documentation and assistance system (C7)
Due to interdependencies between consortium partners, some important goals were not achievable. The development of the three areas "accounting", "quality management" and "cancer registry data" (the latter being used for evaluation purposes) remained immature (Fig. 7). Therefore, a paper-based documentation will be utilised during the initial transitional period in the implementation phase, and later transferred into the IT system.
Evaluation (C8)
In order to enable a comprehensive study as well as external evaluation of the care programme an isPO data warehouse was set-up, and a comprehensive data protection concept was developed. Due to delay in the development of quality indicators (C6), the programming of the care statistics was not carried out in the development phase. To partially compensate this milestone deviation, extracts from the cooperation agreements were used to derive test quality indicators and thus build up the processes of statistical calculation and data preparation.
Focus group and telephone interview (end-users’ and programme designers’ perspectives)
The results are presented in accordance with the four core categories: expectations, cooperation, implementation into care networks, and implementation into routine care (Fig. 8).
Expectations towards the isPO programme
Both, the patients’ representatives and the programme designers expect that isPO implementation will lead to evidence-based, structured, improved and effective psycho-oncological care. In addition, they expect that it will contribute to: (1) optimising the current psycho-oncological care structures, and (2) including psycho-oncology in the billing system and in the catalogue of services of the statutory health insurance. This goes hand in hand with the expectation that psycho-oncology will be strengthened in its position as an integral part of cancer therapy.
Cooperation of consortium partners
All participants described the cooperation amongst themselves as constructive, and communication at a personal level as good. The working groups involved in the isPO programme’s conceptual design, in particular, were in close contact with each other.
All partners mutually appreciated the very high level of commitment of each partner. They described this fact as motivating for their own work. It reflects that everyone was aware of the importance and scope of this project. Despite the high level of commitment, concerns were expressed as to whether the project tasks could be completed within the timeframe. The workload was perceived as emerging and very high.
"... we are now facing the challenge, especially in the first year, of bringing up a complex programme in a very short time on many different levels and dimensions. And this with many instances or with many different partners."
The timeframe was perceived as an obstacle, since several interdependencies between the consortium partners exist. For their own progress, they were reliant on information from and the results of the work of others.
The internal communication within the project was viewed critically by most partners. A lack of a “superordinate unit”, distributing relevant information to all participants, was perceived. This was stressed especially by those partners who were not directly involved in the programme conception. They would like to see "a denser flow of information" and reported that they would receive completed project steps "at best by chance".
Cooperation with care networks
So far, the cooperation with the care networks was almost exclusively with the consortium partner responsible for the care networks’ development. The other partners were not engaged with the care networks during the programme’s development.
The care network developers described the cooperation as intensive. Regular monthly working meetings took place. In addition to providing information about the project and its implementation, there was a need to increase the intrinsic motivation of the care networks to get involved in the isPO programme. It was experienced that reservations and concerns (see subsection ‘barriers to implementation into care networks’) had to be dealt with. Therefore, information was passed on carefully and "diplomatically" in order to convey a realistic picture of the requirements, but not to trigger a feeling of being overwhelmed that might lead to resistance. All programme designers found it important to be open to criticism and the experiences of the care networks, as this will support the implementation in practice.
Facilitators of implementation into care networks
The programme designers perceived the acceptance and motivation of the care networks’ service providers as crucial for the isPO programme’s implementation. During the care networks’ development process, a pronounced interest in the project and an increased level of motivation were noticeable. Nevertheless, it was found to be important to continuously promote the service provider’s acceptance, as this might facilitate the implementation. This can be done by emphasising both the importance of the project, as well as the role and contribution of each individual in the care networks. Also, the importance of structuring and formalising the psycho-oncological documentation should be continuously communicated, especially to increase the acceptance of the new computer-based documentation and assistance system CAPSYS2020.
"...if you provide regular and modern care today, then first of all you have to document this care properly and secondly, […] including the healthcare system, that we also have to strengthen the process orientation in care ..."
IsPO is perceived as a patient-oriented programme. Despite the fact that it is assigned to a specific care level, each screening should be used to check whether patients are receiving adequate care.
Considering the different structural situations before the implementation, for example personnel capacities, might be central for the implementation process. Existing care network structures with regard to diagnostics and documentation may facilitate its implementation.
The focus group participants hoped that the monetary incentives, given for care within the isPO programme, would offer a reimbursement for the additional efforts. IsPO enables the refinancing of psycho-oncological care services for the care networks for comprehensive psycho-oncological care.
Due to the participatory quality development approach, participants also perceived a high potential for the implementation phase. It was pointed out that both, the structures and the tasks of the different roles in the care network were clearly defined, which favours implementation.
Barriers to implementation into care networks
Low acceptance and motivation of the care networks have also been seen as a barrier to the implementation process, provoking a negative attitude towards isPO. Thus, resistance of service providers was perceived as possible, due to associated change processes in their respective work place. The project specifications could lead to restrictive feelings among the service providers with regard to previously established working processes (vs. new isPO processes) as well as therapeutic freedom in the form of a "forced corset".
The participants assumed that care networks might perceive isPO as a “threat” to their internal care structures, should the implementation of isPO replace these. However, such fears could be refuted at the level of therapeutic freedom, since isPO care is only intended to provide a "framework", within which the service providers can "continue to choose the intervention themselves".
It is important to consider the needs and experiences of the service providers so that they do not feel "overwhelmed". Another reason for resistance might be attributed to the study part of the project. Since certain procedures are linked to the fact that isPO is not only a new care form, but is accompanied by a study, service providers may feel restricted in their scope of action.
"...that you simply say that in this project it has to be constructed in a certain way, which we know does not correspond to real life in all places. So, to remove the fear, that this is how it should be done in the future."
Service providers may see the fact that isPO requires new processes as an obstacle to patient-oriented work.
Moreover, it was stated that certain scenarios had not yet been conclusively clarified and that the care networks had, up until now, little detailed programme knowledge. This may lead to uncertainties in the care networks during implementation.
Reservations from the management (e.g. higher personnel costs) could influence the implementation process, acting as a barrier.
Implementation strategies
The training for all service providers and the availability of target group-specific manuals as a written form of the programme’s concept were outlined as essential implementation strategies. It was important to create a balance between detailed description of the programme’s content in the manuals and its scope, as not all care scenarios could be covered. Above all, the isPO manual and quality management manual are intended to provide guidance for work in isPO beyond the training. In addition, CAPSYS2020 is supposed to guide the service providers through the process. During the discussion about implementation strategies, the participants focused on possible communication strategies and how to deal with care networks’ resistance. They stated that a communication interface between programme designers and care networks was needed:
"...whatever that is, we need a feedback system."
Collecting similar questions and distributing information to all networks might be solved by this platform. The designation of a contact person was considered useful to support and accompany the care networks in the "first orientation phase" of the implementation.
Implementation into routine care
Since the isPO project addresses a field of care that is currently insufficiently provided in Germany, its potential to be implemented in routine care was estimated as high. Furthermore, its unique design, which according to the stepped-care approach addresses patient needs, enforces this notion. The structured nature of the isPO programme was seen as a facilitating aspect for the implementation into routine care, as it
"...will generate significantly greater acceptance, also on the part of the medical professions, but also on the part of politics, and thus integration into the health insurance remuneration system, ..."
It was considered to be of central importance to already become politically involved during the project period in order to promote nationwide adoption after project completion.
Moreover, it was perceived as necessary not only to prove the interventions’ effectiveness (end-user level), but also to identify and consider as many implementation factors as possible (e.g. attitude of the service providers, acceptance of the patients towards the programme). A high-quality evaluation could shorten the time required for assessment by key institutions and thus accelerate adoption, so that the care provision gap after project completion is kept short.
However, a potential conflict was perceived at the professional political level since psychotherapists’ position will be strengthened by isPO, but relevant decision-making committees are more occupied by physicians. At the level of national psycho-oncological care structures, fears were expressed that bureaucratic processes would impede rapid adoption into routine care.
Regarding the programme’s implementation into routine care, uncertainties were expressed, that there were currently no plans of the funding organisation (IF) on how to practically organise a comprehensive implementation of funded new care forms like isPO. This raised the question:
"… will the conditions be created to ensure that a new care form … in Germany in the field of psycho-oncology … will continue to be possible in the future…"
Methodological aspects might also impede the nationwide adoption. If the isPO project had methodological weaknesses, for example due to the fact that the care programme was not carried out in accordance with the concept or lack of data and inadequate analyses, there is a risk of a negative evaluation outcome.