International Survey of Psychosocial Care for Cancer Survivors in Low-/Middle- and High-Income Countries: Current Practices, Barriers, and Facilitators to Care

Author:

Signorelli Christina12ORCID,Høeg Beverley Lim3,Asuzu Chioma4ORCID,Centeno Isabel5ORCID,Estapé Tania6ORCID,Fisher Peter7,Lam Wendy8ORCID,Levkovich Inbar9ORCID,Manne Sharon10ORCID,Miles Anne11,Mullen Louise12ORCID,Nekhlyudov Larissa13ORCID,Sade Cristina14ORCID,Shaw Joanne15ORCID,Singleton Anna16ORCID,Travado Luzia17ORCID,Tsuchiya Miyako1819ORCID,Lemmen Jesse2021ORCID,Li Jie2223ORCID,Jefford Michael242526ORCID, ,Altman Shiri,Anang Reginald,Asuzu Chioma,Barrera Maru,Basen-Engquist Karen,Bidstrup Pernille,Bilodeau Karine,Centeno Isabel,Christodoulidou Stephanie,Cirila Andreja,Cohee Andrea,Csaba Dégi László,Dhillon Haryana,Duijts Saskia,Estapé Tania,Fisher Peter,Foster Claire,Fournier Valentyn,Gitonga Isaiah,Goswami Savita,Ha Lauren,Hack Tom,Heathcote Lauren,Howard Fuchsia,Hulbert-Williams Nicholas,Jacobsen Paul,Jefford Michael,Kassianos Angelos,Koczwara Bogda,Lam Wendy,Lasebikan Victor,Lebel Sophie,Lemmen Jesse,Leslie Monica,Levkovich Inbar,Li Jie,Lim Høeg Beverley,Liu Xiaohong,Luigjes Yvonne,Manne Sharon,Martinez Tyson Dinorah,Mazariego Carolyn,Miles Anne,Mirov Yurii,Mullen Louise,Nandakumar Devi,Larissa Nekhlyudo Ray Nascimento,Odiyo Philip,Ortolan Paula,Reshetova Maria,Ruble Kathy,Sade Cristina,Shaw Joanne,Signorelli Christina,Singleton Anna,Smith Ben,Smrdel Škufca,Taylor Carolyn,Travado Luzia,Tsuchiya Miyako,Turner Jane,Veeraiah Surendran,Wells Elizabeth,Xu Lei,Zhang Anao

Affiliation:

1. Discipline of Paediatrics & Child Health, School of Clinical Medicine, UNSW Medicine & Health, UNSW Sydney, Kensington, Australia

2. Kids Cancer Centre, Sydney Children's Hospital, Randwick, Australia

3. Danish Cancer Institute, Copenhagen, Denmark

4. Unit of Psycho-Oncology, Department of Radiation Oncology, College of Medicine, Ibadan, Nigeria

5. Breast Cancer Center, Hospital Zambrano Hellion, Monterrey, Mexico

6. Psychosocial Oncology Department, FEFOC Foundation, Barcelona, Spain

7. University of Liverpool; Liverpool University Hospitals NHS Foundation Trust, Liverpool, United Kingdom

8. School of Public Health, LSK Faculty of Medicine Jockey Club Institute of Cancer Care, The University of Hong Kong, Hong Kong, China

9. Faculty of Graduate Studies, Oranim Academic College of Education, Kiryat Tiv'on, Israel

10. Department of Medicine, Robert Wood Johnson Medical School, Rutgers University, New Brunswick, NJ

11. Department of Psychological Sciences, Birkbeck, University of London, London, United Kingdom

12. National Cancer Control Programme, Health Services Executive, Kings Inns House, Dublin, Ireland

13. Department of Medicine, Brigham and Women's Hospital, Harvard Medical School, Boston, MA

14. Psychosocial Oncology Department, Instituto Nacional del Cáncer, Santiago, Chile

15. School of Psychology, The University of Sydney, Sydney, Australia

16. Faculty of Medicine and Health, Engagement and Co-design Research Hub, University of Sydney, Sydney, Australia

17. Champalimaud Clinical and Research Center, Champalimaud Foundation, Lisbon, Portugal

18. Division of Healthcare Delivery, Survivorship and Policy Research, Institute for Cancer Control, National Cancer Center, Tokyo, Japan

19. Research Institute of Nursing, Musashino University, Tokyo, Japan

20. Pediatric Oncology, Emma's Children Hospital, Amsterdam UMC, Vrije Universiteit Amsterdam, Amsterdam, the Netherlands

21. Princess Máxima Center for Pediatric Oncology, Utrecht, The Netherlands

22. Center for Health Management and Policy Research, School of Public Health, Cheeloo College of Medicine, Shandong University, Jinan, China

23. NHC Key Laboratory of Health Economics and Policy Research, Shandong University, Jinan, Shandong, China

24. Department of Health Services Research, Peter MacCallum Cancer Centre, Melbourne, Australia

25. Australian Cancer Survivorship Centre, Peter MacCallum Cancer Centre, Melbourne, Australia

26. Sir Peter MacCallum Department of Oncology, University of Melbourne, Melbourne, Australia

Abstract

PURPOSE The number of cancer survivors living with and beyond cancer treatment is rising globally. It is fundamental to understand the extent and type of psychosocial care services offered worldwide. We evaluated models of cancer survivorship care, psychosocial care practices in the post-treatment survivorship phase, and barriers/facilitators to delivery of psychosocial care services, including in low- and middle-income countries (LMICs). METHODS The International Psycho-Oncology Society (IPOS) Survivorship Special Interest Group led a cross-sectional online survey between March and November 2022. Health care professionals and researchers in psycho-oncology were invited through the IPOS global membership, social media, and snowballing. The survey was administered to individuals but included questions related to practices in their country at a national level. RESULTS Two hundred eighty-three respondents from 37 countries participated (40% from LMICs), with a median of 12 years of experience (IQR, 6-20) in the psycho-oncology field. Participants reported that the most common elements of routine survivorship care were related to the prevention/management of recurrences/new cancers (74%), physical late effects (59%), and chronic medical conditions (53%), whereas surveillance/management of psychosocial late effects (27%) and psychosocial/supportive care (25%) were least common. Service availability was more commonly reported in high-income countries (HICs) than LMICs related to reproductive health (29% v 17%), genetic counseling/support (40% v 20%), and identifying/managing distress (39% v 26%) and pain (66% v 48%). Key barriers included providers focusing on treatment not survivorship (57%), medical not psychosocial care (60%), and a lack of allied health providers to deliver psychosocial care (59%). CONCLUSION The psychosocial needs of people living with cancer are not adequately available and/or provided in post-treatment survivorship even in HICs, because of barriers at patient, provider, and system levels.

Publisher

American Society of Clinical Oncology (ASCO)

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