Purpose The aim of this study was to explore the beliefs, perceptions and representations of patients in order to identify the determinants of oral anticancer drugs adherence and to take action in current practice to improve patient support in digestive oncology. Methods We constructed a semi-directed interview guide which aimed to explore the patient’s relationship with medication, their health history, their experiences at the time of the announcement of treatment, their confidence, their fears, their motivations to adhere to their treatment and the constraints linked to their treatment. The data were analysed and discussed using a thematic approach. Results Seventeen patients agreed to participate in the study. The median age was 60 years. Ten patients had colorectal cancer, 3 patients had hepatocellular carcinoma, 3 patients had gastrointestinal stromal tumour and 1 patient had neuroendocrine pancreatic tumour. We identified five categories of factors influencing adherence: demographic and socioeconomic, disease-related, treatment-related, care system-related, and patient representation and pathways’ factors. A majority of patients emphasised the importance of family support in the adherence process and the convenience of per os treatment compared to other intravenous treatments. However, several negative determinants emerged such as the toxicity of the treatment, fears of forgetting to take the medication, difficulties with the galenic formulation and negative beliefs of the family. Conclusion This study demonstrates the need to address the different dimensions of the patient in order to understand his or her behaviour with regard to adherence and to identify the levers for improvement.

Objective To explore the experience of caregivers of patients with digestive cancer and to compare the perspectives of patients and caregivers. Methods Caregiver-patient dyads were enrolled in this mixed-methods study. The Caregiver Reaction Assessment (CRA) and the Supportive Care Needs Survey for Partners and Caregivers (SCNS-PC) questionnaires were distributed to caregivers. Semi-structured interviews with the dyads were conducted. Results Thirty-two caregivers completed the questionnaires. Responses showed high self-esteem, schedule burden, and a need for care and information services. Ten dyads participated in the interviews. Three themes emerged from the caregiver’s interviews: illness is an upheaval; loneliness and helplessness are experienced; caring is a natural role with positive outcomes. Four themes emerged from patient's interviews: the caregiver naturally assumes the role and gets closer; he is the patient's anchor; his life is disrupted; anxiety and guilt accompany the desire to protect him. In comparing patient and caregiver data, we identified many similarities. The main theme of disagreement was their relationship. Conclusions Caregiver care does not appear to be optimal, particularly in terms of their need for information. Even though the patients have a fairly good representation of their caregiver’s experience, their opinion and their communication still need to be considered.

Backgrounds Caregivers are essential in the care of a patient with digestive cancer. Considering their experience and needs is crucial. Objectives To explore the experience of caregivers of patients with digestive cancer and to compare the perspectives of patients and caregivers. Methods A mixed-methods study with a cross-sectional prospective and a comprehensive qualitative dimension was performed in a medical oncology unit in a French tertiary hospital. Dyads made of patients with digestive cancer and their caregiver were recruited. The Caregiver Reaction Assessment (CRA) and the Supportive Care Needs Survey for Partners and Caregivers (SCNS-PC) questionnaires were distributed to caregivers. The CRA was used to measure the caregiver burden and the SCNS-PC was used to identify the unmet supportive care needs of caregivers. Semi-structured interviews with the dyads were conducted. Qualitative interviews addressed various dimensions of the caregiver’s experience from each dyad’s member perspective. Results Thirty-two caregivers completed the questionnaires. Responses showed high self-esteem, schedule burden, and a need for care and information services. Ten dyads participated in the interviews. Three themes emerged from the caregiver’s interviews: illness is an upheaval; loneliness and helplessness are experienced; caring is a natural role with positive outcomes. Four themes emerged from patient’s interviews: the caregiver naturally assumes the role and gets closer; he is the patient’s anchor; his life is disrupted; anxiety and guilt accompany the desire to protect him. In comparing patient and caregiver data, the main theme of disagreement was their relationship. Conclusions Caregiver care does not appear to be optimal, particularly in terms of their need for information. Patients have a fairly good representation of their experience, but the caregivers’ opinion need to be considered.

The aim of this study was to explore the beliefs, perceptions and representations of patients in order to identify the determinants of oral anticancer drugs adherence and to take action in current practice to improve patient support in digestive oncology. MethodsWe constructed a semi-directed interview guide which aimed to explore the patient's relationship with medication, their health history, their experiences at the time of the announcement of treatment, their con dence, their fears, their motivations to adhere to their treatment and the constraints linked to their treatment. The data were analysed and discussed using a thematic approach. ResultsSeventeen patients agreed to participate in the study. The median age was 60 years. Ten patients had colorectal cancer, 3 patients had hepatocellular carcinoma, 3 patients had gastrointestinal stromal tumour and 1 patient had neuroendocrine pancreatic tumor. We identi ed ve categories of factors in uencing adherence: demographic and socioeconomic, disease-related, treatment-related, care system-related, and patient representation and pathways' factors. A majority of patients emphasised the importance of family support in the adherence process and the convenience of per-os treatment compared to other intravenous treatments. However, several negative determinants emerged such as the toxicity of the treatment, fears of forgetting to take the medication, di culties with the galenic formulation and negative beliefs of the family. ConclusionThis study demonstrates the need to address the different dimensions of the patient in order to understand his or her behaviour with regard to adherence and to identify the levers for improvement.

Purpose This study aims to explore the experience of caregivers of patients with digestive cancer and to compare the perspectives of patients and caregivers. Methods This was a mixed-methods study on caregiver-patient dyads. Semi-structured interviews with caregivers and their patients were conducted to explore each perspective. Two questionnaires were distributed to caregivers, the Caregiver Reaction Assessment (CRA) and the Supportive Care Needs Survey for Partners and Caregivers (SCNS-PC). Results Thirty-two caregivers completed the questionnaires. The CRA showed great self-esteem (3.8 +/- 0.7) and the burden on schedule (3.3 +/- 1). The SCNS-PC showed a need for healthcare service and information (2.0 +/- 0.8). Ten dyads participated in semi-structured interviews. Three themes emerged from caregiver’s interviews: the illness is an upheaval; the feeling of loneliness and helplessness and its consequences; a natural role with positive outcomes. Four themes emerged from the patient's side: the caregiver naturally takes on this role and gets closer; the caregiver is the patient's anchor; the disruption of the caregiver's life; anxiety, guilt, and the desire to protect the caregiver. Comparison of the data identifies many similarities between patients and caregivers, as well as discrepancies with the main theme being their relationship. Conclusion This demonstrates the importance of caring for caregivers and considering them in the context of their relationship with the patient to better understand their experience.