Sickle cell disease: embedding patient participation into an international conference can transform the role of lived experience.

BACKGROUND: Sickle cell disease (SCD) is an inherited chronic life-threatening disorder with increasing prevalence in Europe. People living with SCD in Europe mainly belong to vulnerable minorities, have a lower level of health education and suffer from isolation compared to those living with other chronic conditions. As a result, SCD patients are much less likely to partner in the design of research related to their condition and are limited in their ability to influence the research agenda. Aiming to increase the influence of patient voice in the development of SCD-related research, we set out to develop patient centered actions in the frame of International Scientific Conferences in collaboration with the ERN-EuroBloodNet, Oxford Blood Group, Annual Sickle Cell Disease and Thalassaemia Conference (ASCAT), the European Hematology Association and the British Society of Hematology. RESULTS: Two events were organized: a one-day research prioritization workshop and a series of education sessions based on topics chosen by SCD patients and their families. Methodology and outcomes were analyzed in terms of influence on scientific, medical and patient communities. CONCLUSION: The ERN-EuroBloodNet workshops with patients at annual ASCAT conferences have provided an opportunity to enhance patient experience and empowerment in SCD in Europe, producing benefits for patients, caregivers, patient associations and health professionals. Future work should focus on delivering the research questions identified at this workshop and the opportunities to share information for patient education.

Examining the levels of psychological support available to patients with haematological cancer in England: a mixed methods study.

OBJECTIVES: The psychological impact of a haematological malignancy is well documented. However, few studies have assessed the provision of psychological support to people with these diagnoses. This study explores the extent and nature of psychological support for people diagnosed with haematological cancer to inform future service provision. DESIGN: This study consisted of an online survey with healthcare professionals (phase 1) and qualitative interviews with patients (phase 2) and key health professionals (phase 3). A descriptive analysis of survey data and thematic analysis of interviews were conducted. PARTICIPANTS: Two hundred health professionals practising in England completed the survey. Twenty-five interviews were conducted with people diagnosed with haematological cancer in the past 3 years, and 10 with key health professionals, including haematologists, cancer nurse specialists and psychologists were conducted. PRIMARY OUTCOME MEASURES: Level of psychological assessment undertaken with people with haematological cancer, and level and nature of psychological support provided. RESULTS: Less than half (47.3%) of survey respondents strongly agreed/agreed that their patients were well supported in terms of their psychological well-being and approximately half (49.4%) reported providing routine assessment of psychological needs of patients, most commonly at the time of diagnosis or relapse. Patients described their need for psychological support, their experiences of support from health professionals and their experiences of support from psychological therapy services. There was considerable variation in the support patients described receiving. Barriers to providing psychological support reported by health professionals included time, skills, resources and patient barriers. Most doctors (85%) and 40% of nurse respondents reported receiving no training for assessing and managing psychological needs. CONCLUSIONS: Psychological well-being should be routinely assessed, and person-centred support should be offered regularly throughout the haematological cancer journey. Greater provision of healthcare professional training in this area and better integration of psychological support services into the patient care pathway are required.

The future of myelodysplastic syndrome-patient priorities and outcomes that matter.

Background: Without a definitive curative option available to many patients, learning to live with myelodysplastic syndrome (MDS) and manage symptoms effectively becomes a priority in their care. Anaemia is an almost universal feature of MDS. Individuals suffer differently and better individualisation of care is needed. Most MDS patient information offers scant appreciation for disease heterogeneity, variable response to treatment and each patient's likely trajectory. Methods: We undertook a two-part, online workshop to discuss what matters most to people living with MDS. Patients generated questions about their condition which they felt should be addressed by research or change how their care is delivered. Patients voted on the importance of each topic, creating a "prioritised" list of issues. Results: Fourteen participants of varying age and experience took part raising 56 unique questions under the themes of: prognosis; end of life; treatment; supportive care; medical staff training; diagnosis and communication. These reflect the symptoms of MDS, improving quality of life (QoL) and communication. Discussion: Although haemoglobin (Hb) levels have correlation to QoL, it is widely reported that other factors are important in determining QoL and need for transfusions varies despite stable Hb levels. We showed that Hb level and the need for transfusions is not comparable between different patients and even non-comparable over time meaning that the maximal benefit and timing of transfusions cannot be determined from Hb alone. This workshop highlighted patient dissatisfaction with the "numbers-led" approach and the need for an alternative method to determine when to transfuse.