ABSTRACT
PURPOSE: The integration of palliative care (PC) into oncological management is recommended well before the end of life. It improves quality of life and symptom control and reduces the aggressiveness of end-of-life care. However, its appropriate timing is still debated. Entry into an early-phase clinical trial (ECT) represents hopes for the patient when standard treatments have failed. It is an opportune moment to integrate PC to preserve the patient's general health status. The objective of this study was to evaluate the motives for acceptance or refusal of early PC management in patients included in an ECT. METHODS: Patients eligible to enter an ECT were identified and concomitant PC was proposed. All patients received exploratory interviews conducted by a researcher. Their contents were analyzed in a double-blind thematic analysis with a self-determination model. RESULTS: Motives for acceptance (PC acceptors: n = 27) were both intrinsic (e.g., pain relief, psychological support, anticipation of the future) and extrinsic (e.g., trust in the medical profession, for a relative, to support the advance of research). Motives for refusal (PC refusers: n = 3) were solely intrinsic (e.g., PC associated with death, negative representation of psychological support, no need for additional care, claim of independence). CONCLUSIONS: The motives of acceptors and refusers are not internalized in the same way and call for different autonomy needs. Acceptors and refusers are influenced by opposite representations of PC and a different perception of mixed management.
Subject(s)
Motivation , Neoplasms , Palliative Care , Humans , Palliative Care/psychology , Palliative Care/methods , Male , Female , Middle Aged , Aged , France , Neoplasms/psychology , Neoplasms/therapy , Patient Acceptance of Health Care/psychology , Aged, 80 and over , Adult , Treatment Refusal/psychology , Clinical Trials as Topic/psychology , Quality of Life , Double-Blind Method , Qualitative ResearchABSTRACT
Introduction: Adolescent and young adult (AYA) survivors who have been treated for cancer during childhood and adolescence are at great risk of the physical, psychological, and social consequences of cancer and its associated treatments. However, compliance with long-term follow-up is low. One possible explanation is that follow-up care fails to meet the expectations of AYA survivors. This study explored the specific supportive care needs of AYA survivors of childhood and adolescent cancer five years post-diagnosis. Methods: Semi-structured interviews were conducted with 15 AYA aged 15 to 25 years old. Thematic analyses were conducted to establish categories of supportive care needs and classify them as being met or unmet. Results: Participants reported between 2 and 20 specific needs (M = 11), including needs concerning fertility issues and reassurance regarding relapse (each mentioned by 67% of AYA), followed by the need for locomotor care, follow-up coordination and multidisciplinary care (60% of AYA for each). Participants also reported needs regarding social relationships, administration and finance, and academic and professional domains. Most (69%) of these needs were reportedly unmet, including need of information about cancer repercussions and follow-up, support in managing fatigue and sleep problems, psychological assistance, and support from peers. Discussion: The supportive care needs are still considerable and varied in AYA survivors of childhood and adolescent cancer 5 years post-diagnosis and are largely unmet. As unmet supportive care needs highlight the gap between available care in follow-up and the real needs of AYA survivors, a better understanding of their supportive care needs and unmet needs, thanks to systematic needs assessment, would enable long-term follow-up care to be adapted, thereby improving compliance and quality of life.
ABSTRACT
Progress in the care of cancer patients has brought out new needs that go beyond the scope of conventional medicine regularly. Integrative oncology allows patients, besides specific care, to access complementary therapies (CT); with the aim of improving in this case the quality of life and the future of the patients and to help them become actors, before, during and after the treatment of their cancer. As for breast cancer management, international recommendations have been given for several years in favor of the use of CT, especially mind-body therapies, and regarded as effective care. Being able to refer patients suffering from any tumors to CT, through a structured procedure, integrated into the care pathway, would improve overall cancer management and the quality of life of the patients during chemotherapy. Improved communication from the oncologist about CT could better the relationships between the oncologist and the patient, and would be a better way to reduce the choice of practices that might be at risk, while improving compliance with conventional treatment. In this context, we report the opening of an integrative oncology consultation within a comprehensive cancer center, detailing the procedure of the consultation, describing the patients and their expectations, as well as the proposals made to them. This type of consultation is still underdeveloped in France and will be the subject of studies in the field of Humanities and social sciences.
