Background
Psycho-oncological care in Germany
The isPO intervention programme and its evaluation
Programme component | Description |
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Stepped care concept | The care concepts’ development is based on the effect theory according to Issel [25] and consists of one general and four minor care concepts [22]. Details on the causal, intervention and impact theory underlying the concept(s) are published by Kusch et al. [22]. In general, the intervention theory is based on a stepped care approach [7, 26‐28], in which the intervention measures are assigned to patients’ care needs. Based on the Hospital Anxiety and Depression scale [29] and the Psychosocial Risk questionnaire [30] patients are allocated to a specific care level (Fig. 1). All patients are supported by isPO-specific case management services and are offered a conversation with a so-called isPO onco-guide (trained former cancer survivor) [22]. Dependent on the individual care needs, patients may additionally receive psychosocial or psycho-oncological-psychotherapeutic care [22]. Patients with complex care needs, may receive both, psychosocial and psycho-oncological-psychotherapeutic care [22]. Care services within the isPO programme are limited to one year [22]. |
Care pathways | The isPO programme contains general care pathways (Fig. 1) and detailed minor care pathways [22]. Each existing care pathway includes an algorithm with specific execution and selection recommendations which is integrated into the information technology (IT) – supported documentation and assistance system ‘CAPSYS’. Within CAPSYS, there are specific care documents filed for each care pathway, for instance: the isPO care manual, instructions, or evaluations of the deployed psychometric instruments. The structure of the care pathways mainly aims to ensure contractually appropriate care delivery and quality assurance. |
Psycho-oncological care networks | The isPO programme aims to be integrated into bio-medical care and across different phases of cancer treatment (from acute therapy to aftercare) [22, 23]. For this, new psycho-oncological care networks were established. Each network consists of one cancer centre hospital that cooperates with at least one outpatient oncological practice. Hence, cancer patients may be referred to the isPO programme regardless in which setting their biomedical treatment takes place. The establishment of the care networks is contractually regulated. |
Care process organisation | Psycho-oncological care that is provided within the isPO programme is contractually specified with German health insurance agencies [22]. This care contract refers to isPO’s core clinical services and clinical processes. Further, it specifies core formal and administrative services. Core services and processes were operationalised in the form of selection and execution recommendations that map the care concept [22]. Local tailoring of the recommendations is possible to achieve a good fit for the implementation setting [22]. |
Information technology (IT)-supported documentation and assistance system CAPSYS | CAPSYS aims to meet national care requirements (SGB V) and internal needs of care documentation, care and quality management, billing and data protection [22]. It consists of two parts that are interlinked: CAPSYS-docu and CAPSYS-assist. CAPSYS-docu may be used for capturing patient care data and care service delivery. CAPSYS-assist was developed to support the planning, guidance and examination of patient care [22]. Other components of the isPO programme, e.g. care pathways or care process organisation, are integrated in CAPSYS. |
Quality assurance and improvement | Every quarter, internal quality circles are held in the psycho-oncological care networks to ensure quality of care [22]. Further, external quality workshops are conducted with the consortium partners of the isPO project (e.g. programme designer and implementation supporters) and representatives from the psycho-oncological care networks (usually the network coordinators and head psycho-oncologists) [22]. In addition, quality indicators were defined based on the operational, clinical and formal-administrative recommendations of the care pathways [22]. Data to assess the indicators stem from the care data in CAPSYS, which then allows the creation of quality reports and benchmarking [22]. |
Objective
Methods
Patient survey
Measurements
Variable & time point of measurement | Scale and item specifics | Example item |
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Satisfaction with case management T1a | health literacy-sensitivity of communication scale (HL-COM) [41] 8 itemsb Four point Likert scale from 1 ‘I totally disagree’ to 4’I fully agree’ | I was encouraged to ask questions if I did not understand something |
Satisfaction with the isPO onco-guide T1 | Two itemsc from the Consultation and Relational Empathy Scale (CARE) [42] were adapted and used Five additional self-developed items were used to evaluate whether the… - information provided by the onco-guide was helpful - onco-guide answered questions in a satisfactory manner - onco-guide had enough time for the patient - patient felt connected to the onco-guide - and how satisfied the patient was overall Four point Likert scale from 1 ‘I totally disagree’ to 4’I fully agree’ | The isPO onco-guide behaved in a way that made me feel comfortable |
Satisfaction with the psychosocial professional T2 | Six self-developed items were used to evaluate, whether… - patients received helpful information during their consultations - information was explained in an understandable way - the psychosocial professional answered all the patient’s questions - the consultations were too short - the patient’s personal circumstances and environment were taken into account - patients were advised in a way that they were able to put advice and support into practice Four point Likert scale from 1 ‘I totally disagree’ to 4’I fully agree’ | The psychosocial professional explained all the information to me in an understandable way |
Satisfaction with the psychotherapist (therapeutic alliance) T2 | 12-item short German version of the Working Alliance Inventory (WAI-SR) [43], which is based on the English WAI-SR [44].d The inventory measures the dimensions of therapeutic alliance, as described by Bordin [45], including: Goal, Task, and Bond Patients indicated how often an item applied on a five-point Likert scale | We agree on what is important for me to work on |
Subjective effectiveness T2 | Four self-developed items Four-point Likert scale from 1 ‘I totally disagree’ to 4’I fully agree’ | The care in isPO makes me feel better |
Satisfaction and orientation to needs T2 | Four self-developed items Four-point Likert scale from 1 ‘I totally disagree’ to 4’I fully agree’ | The care in isPO supported me according to my needs |
Frequency of appointments T2 | One self-developed item Three response options: ‘too rare’, ‘suitable’, ‘too often’ | The frequency of appointments was… |
Duration of appointments T2 | One self-developed item Three response options: ‘too short’, ‘suitable’, ‘too long’ | The duration of appointments was… |
Global health status T1 & T2 | Global health status subscale consisting of two items of the German version of the EORTC-QLQ-C-30 [46] Response options from 1 ‘very bad’ to 7’excellent’ Transformed scores can range from 0 to 100. Higher scores represent a better level of functioning or less intense level of symptoms | Overall, how would you rate your physical status during the last week? |
Work ability T1 & T2 | Patients assessed their current work ability compared to their lifetime best: poor (0–5 points), moderate (6–7 points), good (8–9 points), or excellent (10) from 0 ‘completely unfit for work’ to 10 ‘currently best work ability’ | If you rate your best ever work ability with 10 points: how many points would you give for your current working ability? |
Anxiety and depression T0, T1, T2e | German version of the Hospital Anxiety and Depression Scale (HADS) [29] The scale captures the degree of anxious and depressive symptoms in the past week and consists of two subscales, Anxiety and Depression, with seven items each | Worrying thought go through my mind |
Statistical analysis
Patient interviews
Data collection
Qualitative analysis
Results
Quantitative results
Variable | N | M | SD | Min | Max |
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Satisfaction with case management T1a (health literacy-sensitive communication, HL-COM) | 865 | 3.28 | 0.65 | 1.00 | 4.00 |
Satisfaction with the isPO onco-guide T1 | 692 | 3.39 | 0.60 | 1.00 | 4.00 |
Satisfaction with the psychosocial professional T2 | 252 | 3.16 | 0.46 | 1.00 | 4.00 |
Satisfaction with the psychotherapist T2 (therapeutic alliance, WAI) | 200 | 3.88 | 0.89 | 1.00 | 5.00 |
Subjective effectiveness T2 | 409 | 2.90 | 0.74 | 1.00 | 4.00 |
Satisfaction and orientation to needs T2 | 415 | 3.27 | 0.68 | 1.00 | 4.00 |
Frequency of appointments T2 | 353 | 0.76 | 0.43 | 0 | 1.00 |
Duration of appointments T2 | 361 | 0.88 | 0.33 | 0 | 1.00 |
Global health status T1 (EORTC-QLQ-C30) | 978 | 52.82 | 23.19 | 0 | 100.00 |
Global health status T2 (EORTC-QLQ-C30) | 507 | 61.64 | 21.24 | 0 | 100.00 |
Work ability T1 (WAS) | 956 | 3.69 | 3.05 | 0 | 10.00 |
Work ability T2 (WAS) | 488 | 5.03 | 3.15 | 0 | 10.00 |
Anxiety and depression T0b (HADS) | 1752 | 16.31 | 8.70 | 0 | 42.00 |
Anxiety and depression T1 (HADS) | 1316 | 14.18 | 8.25 | 0 | 41.00 |
Anxiety and depression T2 (HADS) | 722 | 12.91 | 8.24 | 0 | 39.00 |
Predictor | F (df regression, df residual) | Corr. R2 | β | B | p | 95% CI Min; Max |
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Criterium variable: global health status (T2) | ||||||
Satisfaction with case management T1 (HL-COM) | 11.72 (1, 382) | .027 | 0.17 | 5.96 | < .001 | 2.54; 9.39 |
Satisfaction with the isPO onco-guide T1 | 8.73 (1, 300) | .025 | 0.17 | 6.79 | .003 | 2.27; 11.32 |
Satisfaction with the psychosocial professional T2 | 9.19 (1, 249) | .032 | 0.19 | 8.96 | .003 | 3.14; 14.78 |
Satisfaction with the psychotherapist T2 (therapeutic alliance) | 0.01 (1, 197) | -.005 | -0.01 | -0.19 | .911 | -3.59; 3.20 |
Subjective effectiveness T2 | 5.75 (1, 406) | .012 | 0.12 | 3.37 | .017 | 0.61; 6.12 |
Satisfaction and orientation to needs T2 | 10.00 (1, 412) | .021 | 0.15 | 4.73 | .002 | 1.79; 7.67 |
Frequency of appointments T2 | 2.94 (1; 350) | .005 | 0.09 | 4.51 | .087 | -0.66; 9.68 |
Duration of appointments T2 | 1.84 (1; 358) | .002 | 0.07 | 4.60 | .176 | -2.08; 11.28 |
Criterium variable: work ability (T2) | ||||||
Satisfaction with case management T1 (HL-COM) | 8.39 (1, 371) | .019 | 0.15 | 0.76 | .004 | 0.24; 1.28 |
Satisfaction with the isPO onco-guide T1 | 7.57 (1, 292) | .022 | 0.16 | 0.34 | .006 | 0.27; 1.62 |
Satisfaction with the psychosocial professional T2 | 2.62 (1, 242) | .007 | 0.10 | 0.70 | .107 | -0.15; 1.55 |
Satisfaction with the psychotherapist T2 (therapeutic alliance) | 3.59 (1, 192) | .013 | 0.14 | 0.49 | .060 | -0.02; 0.99 |
Subjective effectiveness T2 | 4.08 (1, 394) | .008 | 0.10 | 0.43 | .044 | 0.01; 0.86 |
Satisfaction and orientation to needs T2 | 12.98 (1, 401) | .029 | 0.18 | 0.82 | < .001 | 0.37; 1.27 |
Frequency of appointments T2 | 5.57 (1; 339) | .013 | 0.13 | 0.95 | .019 | 0.16; 1.75 |
Duration of appointments T2 | 3.01 (1; 348) | .006 | 0.09 | 0.91 | .084 | -0.12; 1.93 |
Criterium variable: anxiety and depression (T2) | ||||||
Satisfaction with case management T1 (HL-COM) | 17.06 (1, 469) | .033 | -0.19 | -2.32 | < .001 | -4.43; -1.22 |
Satisfaction with the isPO onco-guide T1 | 13.68 (1, 365) | .033 | -0.19 | -2.75 | < .001 | -4.22; -1.29 |
Satisfaction with the psychosocial professional T2 | 12.09 (1, 239) | .055 | -0.24 | -4.20 | < .001 | -6.33; -2.07 |
Satisfaction with the psychotherapist T2 (therapeutic alliance) | 0.37 (1, 187) | -.003 | 0.04 | 0.39 | .544 | -0.87; 1.65 |
Subjective effectiveness T2 | 1.08 (1, 391) | .000 | -0.05 | -0.55 | .300 | -1.58; 0.49 |
Satisfaction and orientation to needs T2 | 4.87 (1, 396) | .010 | -0.11 | -1.23 | .028 | -2.33; -0.13 |
Frequency of appointments T2 | 12.21 (1; 335) | .032 | -0.19 | -3.42 | < .001 | -5.35; -1.50 |
Duration of appointments T2 | 3.56 (1; 344) | .007 | -0.10 | -2.43 | .060 | -4.97; 0.11 |
Qualitative results
Positive experiences and perceptions of the isPO programme
Negative perceptions of the isPO programme and optimisation needs
isPO in routine care
Discussion
Quality of care in isPO
Implications for quality of care in psycho-oncology
Recommendations regarding the isPO programme | |
Needs-oriented patient support | Allow flexibility regarding the timing (start and end of care) → Patients have different needs, emotional coping mechanisms, and illness severity. |
Maintain flexibility in the delivery of care (mode and frequency of care delivery) → patients have different preferences and access to care. Hence, care delivery that allows appointments to be conducted flexibly face-to-face, via telephonic or videochat, may facilitate needs-oriented care. The same applies for the frequency of appointments, which can vary between patients due to different care needs and cancer treatment → It promotes needs-oriented care and makes care structures more adaptable to disruptions in the healthcare system (e.g. pandemic). | |
Staff education and information flow | Provide adequate training (initial and ongoing) of isPO service providers and medical personnel towards the new programme and promote cooperation between oncological and psycho-oncological services → Lack of knowledge (e.g. oncologists not knowing about the programme) or inadequate information (e.g. case managers knowledge regarding the role of isPO onco-guides) may impede high-quality programme delivery and accessibility for patients. Good cooperation and medical staff’s acceptance of psycho-oncological care may reduce barriers in patients’ access to care. |
Address information loss due to staff rotation within the oncological departments → Regular, periodic information sessions would be helpful to maintain the information flow (e.g. newsletters or information sessions). | |
New programme elements | Reflect on the integration of further psycho-oncological care services → Severe illnesses may affect not just the patient, but also their family and social environment. Expanding care to relatives may be helpful. Some patients require specific support, such as art therapy. Providing suitable offers might elementarily support these patients. |
Recommendations regarding routine psycho-oncological care | |
Cultural change | Invest in reducing stigma surrounding utilisation of psycho-oncological care → Using a multilevel approach (e.g. via media, peer groups, and good practice examples) is considered helpful. |
Patient information and education | Use end user-friendly patient information material → It may give patients orientation, e.g. on psycho-oncological care processes or important contact persons to access care services, and satisfy information needs, e.g. in regard to what psycho-oncology is, comprehensibly. Further, user-friendly material may facilitate informed decision-making. → If new materials need to be designed, consider the inclusion of patients’ experiences and perspectives (empowerment) [82]. |
Sustainability and multidisciplinary | Implement structured financing for cross-sectoral psycho-oncological care → Patients emphasised the need to ensure needs-oriented and structured care models, such as isPO, by assuring that they receive sufficient financing. The German healthcare system omits financing of psycho-oncological care that is structured and anchored in law. Investing in psycho-oncological care may be beneficial for insurance companies in the long term (e.g. in terms of increasing work ability) |
Implement interlocking, multidisciplinary structured needs-oriented care (e.g. isPO) → Patients expressed that multidisciplinary teams facilitated needs-oriented care; interlocking them simplified access to respective care services | |
Avoid sectoral separation of care as patients desire care continuity with fixed contact persons (in- and outpatient) |