Short summary

The overall aim of this Ph.D. study is to investigate the effect of a compassion intervention in cancer survivorship care towards patients with colorectal cancer about increased quality of life and participation in cancer survivorship care. Furthermore, it describes the meaning of self-compassion within the cancer trajectory, concerning the quality of life and participation in cancer survivorship care.

Rationale

The incidence of colorectal cancer is increasing throughout the Western world. Because of international efforts to optimize treatment and care through fast-track treatment programs, the number of survivors of colorectal cancer is increasing as well. Risk of late effects from colorectal cancer and cancer treatment are for example hernia, urinary incontinence, fistulas, fatigue, and reduced stamina. Furthermore, reduced quality of life, fear of cancer recurrence, and depression among survivors from colorectal cancer, have an overall negative biopsychosocial effect. Therefore, requirements to address needs related to biopsychosocial side effects and challenges related to colorectal cancer are increasing and it is argued that cancer survivorship care should be part of the standard procedures within cancer treatment. Cancer survivorship care (CSC) involves many aspects of care, from prevention, screening, and rehabilitation to end-of-life, however, concerning survivors of colorectal cancer, there is a need for further development of CSC. A growing body of evidence proves that CSC is effective and essential to prevent further illness and improve functioning and chances of survival. CSC includes cancer rehabilitation; for clarity, in this study, we consider cancer rehabilitation as CSC. It embraces physical, psychological, and social needs among patients with cancer, seeking to help them to return to a meaningful life and functioning (20). Rehabilitation is A process aimed at enabling patients to reach and maintain their optimal physical, sensory, intellectual, psychological, and social functional levels. In Denmark, before participation in CSC, an assessment regarding CSC needs is required through a formal needs assessment. In the Region of Southern Denmark, a specific two-page paper needs assessment form is used in the hospital setting. It covers the following domains: Practical, everyday life, family and friends, health and physical, emotional, and spiritual/religious - to identify possible needs. The document is considered to be a communication and interaction tool within CSC between the hospital and the municipality, that aims to support the patients in further cancer trajectory. The rehabilitation teams in the community healthcare service are responsible for performing CSC based on biopsychosocial needs. Filling out the needs assessments form with the patient and ensuring enrollment in CSC requires communication and interaction between the health care professionals at the hospital (HCP) and patients with colorectal cancer on cancer survivorship relevance and accessibility. Communication and interaction are crucial for patients to make informed choices on CSC. HCP's communication and interactions with patients with cancer may have significant importance when it comes to the course of the disease, compliance with treatment, and CSC. Patients with cancer may have difficulty understanding information if they are affected emotionally by the diagnosis and treatment. A third of all patients with cancer in Denmark have difficulties finding and applying information related to their disease, possibilities, and how to interact with health professionals, and studies have shown that a great amount of these patients with a potential need for CSC are not participating in a CSC program. Challenges related to communication and interactions when conducting the formal need assessment, may be one of the explanations why a high number of patients with cancer do not receive CSC. To be able to understand information and to be involved in their cancer trajectory, appropriate communication and interaction with patients diagnosed with cancer is important. This requires enhanced communication and interaction skills and interpersonal attitudes from HCPs working with cancer care, such as actively listening, respect, interest in the patient, and involving the patient in their trajectory. Furthermore, especially patients with cancer and limited communication and literacy skills are less adherent to cancer treatment and limitations in literacy in health may have a negative impact on their CSC trajectories since, they have higher unmeet information needs, this underpins the complexity of communication and interactions with patients with cancer. A more compassionate approach to communication and interaction with patients has shown a positive effect on adherence to cancer treatment, reduction in pre-operative anxiety, and even reduce pain. Compassion is an openness to the suffering of own and others - as well as a deeply felt desire to both alleviate and prevent. Compassion has three directions: giving compassion to others, receiving compassion from others, and giving compassion to oneself. Core qualities of compassion are wisdom, loving care, strength, and courage. Compassion can be trained and can therefore be a useful frame for HCP to communicate and interact with patients with cancer. Studies show that physician empathy is associated with cancer patients' outcomes and affects communication and interactions between patients and HCP. Unfortunately, this entails a paradox among HCP, because exposure to the pain and suffering of cancer patients, can lead to compassion fatigue, reduce compassion satisfaction and increase burnout in HCP. Therefore it is not only important to approach compassion towards patients with cancer to improve communication and interaction so that more patients with cancer can get a better outcome of needs assessment and therefore also CSC - and possibly reduce in late effects of their cancer treatments. It is significantly important to practice and cultivate self-compassion among HCP working with cancer care because compassion can serve as a means to improve the mental health of healthcare workers as well. This study entails the elements of HCP giving compassion toward patients, patients receiving compassion, and training compassion among HCP. The needs assessment form for CSC was intended to be an effective communicative and interactive key tool to be used to provide understanding of and referral to CSC in a cross-sectional field of healthcare, however, it is unclear if it is beneficial for the patient and the course of CSC. We know for a fact, that patients with cancer do not receive CSC and a great amount of these patients still suffer from biopsychosocial late effects for up to two years from the end of treatment. There is a need, not only to identify challenges in communication and interaction within the field of needs assessment in CSC but also to have an innovative approach to help cancer patients in their trajectory of CSC. Therefore, this PhD-project will assess the following research questions: Overall aim The overall aim of this Ph.D. study is to investigate the effect of a compassion-supported intervention in cancer survivorship care towards patients with colorectal cancer, about increased quality of life- and participation in cancer survivorship care. Furthermore, to describe the meaning of self-compassion and health literacy within the cancer trajectory, concerning the quality of life and participation in cancer survivorship care. Throughout the project, the following research questions will be addressed: 1: Can a compassion-supported needs assessment in cancer survivorship care increase the quality of life among patients with colorectal cancer and increase participation in cancer survivorship care in community health care? And is this influenced by patients' self-compassion and level of health literacy? (Study I) 2: Does compassion influence participation in cancer survivorship care?; from the perspectives of patients with cancer and cancer survivors and health care professionals (Study II) 3) Can compassion training among healthcare professionals in cancer care, increase self-compassion and alleviate high emotional healthcare worker distress (Study III)

Description of the cohort

Patients diagnosed with colorectal cancer admitted at the Department of colorectal surgery at the University Hospital of Southern Denmark, Esbjerg, Denmark will be invited to participate in the study. Healthcare professionals at a colorectal surgical ward and ambulatory at the University Hospital of Southern Denmark, Esbjerg will be invited to participate.

Data and biological material

Data collection: Age, gender, diagnosis, TNM-tumor staging, blood samples collected earlier on in the patient's cancer trajectory concerning their investigation for cancer, all journal notes related to cancer surgery, duration of hospitalization, complication within 30 days post-surgery-morbidity and social status will be extracted from the Electronic Patient Journal (EPJ). Comorbidity will be scored by Charlson Comorbidity Index Scored (55). The number of patients participating in a CSC course, number of completed needs assessments, number of referrals to CSC, in the primary care setting, and completed CSC course will be extracted from the electronic patient journal. A Self-Compassion questionnaire developed by Kristin Neff 2003, and the Professional Quality of Life Health (ProQOL Health) questionnaire, Version 1, developed by Center for Victims of Torture 2021 will be sent to the healthcare professionals.

Collaborating researchers and departments

Department of Surgery, Southern Denmark University Hospital, Esbjerg, Denmark

• Rasmus Krøijer, MD, Associate Professor