gms | German Medical Science

Background: When being presented with their treatment options, patients often have a plethora of information to consider, and need to cope with the distress and anxiety related to their disease and potential treatment outcomes. Many patients feel overwhelmed by their emotions and the information they receive, which can interfere with their ability to recall and comprehend the information provided by their clinicians, and lead to anxiety, dissatisfaction with care, and inability to cope with illness. This is particularly important for haematological cancer patients and their support persons, given the high symptom burden and frequently invasive and toxic treatment. One treatment that includes a significant risk of mortality and long-term morbidity and can cause high physical and psychosocial stress is autologous and allogeneic stem cell transplantation. However, there is a lack of strategies that could help transplant patients and their support persons to “digest” and use the information provided by their clinicians. This project will help to fill this gap by developing and testing an intervention designed to improve doctor-patient-communication related to stem cell transplants.

Aims: The study project consists of two parts: Part I will explore, qualitatively, in a sample of haematological cancer patients (prior to haematopoietic stem cell transplantation or CAR-T cell therapy), their support persons and treating clinicians, their perceptions of issues relating to the provision of diagnosis, treatment options and strategies to improve the quality of care. Part II will use a randomised controlled trial (RCT) to investigate the effectiveness of an intervention designed to improve psychosocial outcomes of haematological cancer patients and their support persons.

Methods: For part I, semi-structured interviews with haematological cancer patients, their support persons and clinicians will be conducted. A purposeful sampling frame will be chosen to recruit participants from various socio-demographic and disease-related backgrounds. Open-ended questions will be used to elicit the variety and interplay of factors related to diagnosis and treatment discussions, psychological concerns and strategies to improve the quality of care. Data will be analysed using framework analysis. Based on the findings of part I, an intervention will be developed and refined with the help of a multidisciplinary working group. For part II, a two-arm RCT will be conducted with haematological cancer patients and their support persons. It will examine whether the intervention can (1) improve knowledge of illness and treatment options in patient-support person dyads. It will also establish at two weeks follow-up whether dyads receiving the intervention report: (2) greater self-efficacy; (3) greater concordance between preferred and perceived involvement in decision making; and (4) that the intervention is acceptable. Consenting patient-support person dyads will be randomly allocated to receive either the intervention or usual care. Participants in both groups will complete a baseline survey and a follow-up interview approximately two weeks later.

Results: Data collection is currently underway. Preliminary results of part I and a prototype of the intervention will be presented at the conference.

Discussion: This project will make a seminal contribution to knowledge about how to improve care for transplant patients and their support persons. Using robust methodology, this research will provide patients, their support persons and clinicians with communication strategies to support treatment discussions related to transplant procedures. The intervention will be easily modifiable to address other cancer-related information needs, such as those relating to follow-up or end-of-life care. Thus, the project findings will provide an important step towards delivering optimal, patient-centred care which improves patient outcomes, ensures efficient and ethical clinical practice and protects the legal rights of patients.

Practical implications: The increasing complexity of clinical practice limits the time clinicians have to meet a multiplicity of demands and patient needs. This project will help to overcome this and other known barriers to optimal patient-centred care through an intervention that utilises widely available communication techniques and requires limited but strategic input from clinicians. It has been suggested that to implement communication strategies into clinical practice we need to actively target patients and clinicians, as both are key players for the decisions to be made. This project will help to achieve this by using a mixed methods approach to develop and test an intervention that is acceptable and feasible to both patients and clinicians. The simplicity and versatility of this approach means that if effective, the intervention will be accessible, easily integrated into practice functioning, and sustainable.