Summary

People with cancer are regularly affected by poor mental health, with 52% reporting psychological distress.1 However, only 9% of people with cancer in Germany received inpatient psycho-oncological care.2 To combat this, the integrated, cross-sectoral psycho-oncology programme (isPO) was established. It offers 12 months of personalised psychosocial and psychotherapeutic care to all adults newly diagnosed with cancer.3 Since its implementation in 2018, 1,757 people have participated in the programme.4

Challenge

More than 420,000 people in Germany are diagnosed with cancer every year,5 and a 20% increase in cases is predicted by 2030.6 As the number of cases of cancer increases, so do survival rates. The probability of premature death from cancer in Germany is predicted to drop to 5.91% by 2030.7 More people are recovering from or living with cancer long-term, and require rehabilitative and follow-up services that address the psychological burden of cancer.

People with cancer are regularly affected by poor mental health: in Germany, 35% of people with cancer live with mental disorders,8 in comparison with the national average of 25%.9 High levels of psychological distress have been reported in 52% of people with cancer,1 with fatigue, insomnia and lack of mobility being cited as the most prevalent issues. Even where self-reported quality of life is comparable to the general population,10 psychosocial adversity persists.

While 40% of people with cancer in Germany request psycho-oncological care,11 only 9% have reported that they received inpatient psycho-oncological care and only 3% attended a cancer counselling centre.2 Psycho-oncological services are unevenly distributed across the country, with coverage of less than 50% in more than half of the regions.12

Solution

The integrated, cross-sectoral psycho-oncology programme (isPO) was set up in 20166 following on from the publication of the 2012 National Cancer Plan13 and the 2014 evidence-based guidelines,14 both of which called for psycho-oncological care during cancer therapy and aftercare. The isPO was implemented in 2018 across four regions in Germany.5

The isPO offers 12 months of tailored, professional psychosocial and psychotherapeutic care to all adults newly diagnosed with cancer.3 The aim of the programme is to reduce recurrent acute psychological stress reactions among people with cancer in the first year after diagnosis. The programme is also being used as a prototype to assess the expansion and implementation of a structured psycho-oncological care programme in standard oncological care across Germany.2

Participants in the isPO are assigned to one of four levels of care, identified by early-detection questionnaires.5 Depending on individual need, people will receive stepped care and support from a multidisciplinary team including case managers, cancer survivor volunteer ‘onco-guides’, psychosocial professionals and psychotherapists.15

What has been achieved?

So far, 1,757 people newly diagnosed with cancer have participated in the isPO.4

A multi-perspective, mixed-methods evaluation of the service has been carried out.16 It found that participating in the programme improved patient confidence, helped people cope with their diagnosis, and provided useful and personal information to participants about the care pathway. The isPO was found to be as beneficial as other one-to-one peer support programmes.16 17

A separate evaluation of the use of onco-guides as part of the isPO has found that the initial health effects of the programme are psychosocially beneficial.4

The service was also found to be a cost-effective way to support people with cancer through their care journey.16

Next steps

The results of the programme evaluation will be used to inform the expansion of the isPO.16 The programme was found to meet the psycho-oncology guidelines, meaning it can be implemented as an independent form of care.13 14

The long-term impact of the programme is still to be assessed, but the initial evaluation has suggested that flexibility and adaptability of service provision is required at both organisational and individual levels.16 The evaluation also suggests that all relevant stakeholders participate in any further study design to allow for optimisation of the service.16

References:

  1. Mehnert A, Hartung TJ, Friedrich M, et al. 2018. One in two cancer patients is significantly distressed: Prevalence and indicators of distress. Psycho-oncology 27(1): 75-82
  2. Institut für Medizinsoziologie Versorgungsforschung und Rehabilitationswissenschaft. 2023. Our research: isPO - Integrated, cross-sectoral Psycho-oncology. [Accessed 19/07/23] Available here: https://www.imvr.de/en/chair-for-quality-development-and-evaluation-in-rehabilitation/finished-research-projects/
  3. Jenniches I, Lemmen C, Cwik JC, et al. 2020. Evaluation of a complex integrated, cross-sectoral psycho-oncological care program (isPO): a mixed-methods study protocol. BMJ Open 10(3): e034141
  4. Derendorf L, Stock S, Simic D, et al. 2023. Developing quality indicators for cross-sectoral psycho-oncology in Germany: combining the RAND/UCLA appropriateness method with a Delphi technique. BMC Health Serv Res 23(1): 599
  5. Deutsches Register Lkinischer Studien. 2019. Integrated, cross-sectoral psycho-oncology. [Accessed 19/07/23] Available here: https://drks.de/search/de/trial/DRKS00015326
  6. Kusch M, Labouvie H, Schiewer V, et al. 2022. Integrated, cross-sectoral psycho-oncology (isPO): a new form of care for newly diagnosed cancer patients in Germany. BMC Health Serv Res 22(1): 543
  7. World Health Organization. 2021. Cancer country profile: Germany. [Accessed 19/07/23] Available here: https://cdn.who.int/media/docs/default-source/country-profiles/cancer/deu-2020.pdf?sfvrsn=375efc8b_2&download=true
  8. Caruso R, Breitbart W. 2020. Mental health care in oncology. Contemporary perspective on the psychosocial burden of cancer and evidence-based interventions. Epidemiol Psychiatr Sci 29: e86
  9. Deutsche Gesellschaft für Psychiatrie und Psychotherapie Psychosomatik und Nervenheilkunde. 2023. Psychische Erkrankungen. Berlin, Germany: Deutsche Gesellschaft für Psychiatrie und Psychotherapie Psychosomatik und Nervenheilkunde
  10. Arndt V, Koch-Gallenkamp L, Jansen L, et al. 2017. Quality of life in long-term and very long-term cancer survivors versus population controls in Germany. Acta Oncologica 56(2): 190-97
  11. Weis J, Hönig K, Bergelt C, et al. 2018. Psychosocial distress and utilization of professional psychological care in cancer patients: An observational study in National Comprehensive Cancer Centers (CCCs) in Germany. Psycho-oncology 27(12): 2847-54
  12. Schulz H, Bleich C, Bokemeyer C, et al. 2018. Psychoonkologische Versorgung in Deutschland: Bundesweite Bestandsaufnahme und Analyse Hamburg, Germany
  13. European Partnership for Action Against Cancer. 2012. National Cancer Plans: Germany. Berlin, Germany Available here: https://adcc.org/#our-impact
  14. Arbeitsgemeinschaft der Wissenschaftlichen Medizinischen Fachgesellschaften. 2015. Guideline on psycho-oncological diagnosis, counselling and treatment of adult cancer patients. Berlin, Germany
  15. Salm S, Cecon N, Jenniches I, et al. 2022. Conducting a prospective evaluation of the development of a complex psycho-oncological care programme (isPO) in Germany. BMC Health Serv Res 22(1): 531
  16. Salm S, Houwaart S, Cecon-Stabel N, et al. 2023. Integrating one-to-one peer support into psycho-oncological care in Germany: multi-perspective, mixed-methods evaluation of the isPO onco-guide service. Journal of Cancer Research and Clinical Oncology 149(12): 10399-422
  17. White S, Foster R, Marks J, et al. 2020. The effectiveness of one-to-one peer support in mental health services: a systematic review and meta-analysis. BMC Psychiatry 20(1): 534