23–26 April, 2023 Hybrid Meeting

Copyright: Modified and published with permission from https://www.ebmt.org/annual-meeting

Sponsorship Statement: Publication of this supplement is sponsored by the European Society for Blood and Marrow Transplantation. All content was reviewed and approved by the EBMT Committee, which held full responsibility for the abstract selections.

35 - Psychological Issues

P709 HETEROGENEOUS PSYCHOLOGICAL ASPECTS IN PATIENTS UNDERGOING ALLOGENEIC HEMATOPOIETIC STEM CELL TRANSPLANTATION

Eliana Kachaamy 1, Kamal Zahran1, Ahmad Ibrahim1

1University of Balamand, Middle East Institute of Health, Beirut, Lebanon

Background: Allogeneic hematopoietic stem cell transplant (HSCT) can induce long-term physical and psychological sequels. Each patient (pt) has a unique story and is defined as the “one who suffers” and report a high prevalence of psychological distress, which can impact negatively recovery, functions and health outcomes. Therefore, intervention can contribute to the understanding and management of psychological problems induced by allogeneic HSCT. The objective is to provide an overview of the physical, emotional, psychological and social dimensions of the pt who is suffering from psychopathological symptoms due to the stress of the disease, its danger and undergoing allogeneic HSCT.

Methods: A 14-question questionnaire was used to assess the psychological state including, depression, anxiety, post-traumatic stress disorder, cognitive impairment, social relations, resulting from HSCT. Patients were screened before allogeneic HSCT, then followed-up at least once weekly until discharge from the bone marrow transplant unit. Given the current economic difficulties of Lebanon, a question was added to the questionnaire aiming to see the anguish due to this obstacle.

Results: From June 2020 to November 2022, 42 pts cooperatively answered the psychological questionnaire before and after allogeneic HSCT. There were 21 women and 21 men. Median age was 44.5 years old (20–67). The pts gave the following results respectively for common items: All of the pts had a preference to know everything related to the disease, treatment and monitoring in addition to a psychological follow-up before allogeneic HSCT. 15 pts showed a state of shock, a slow blurred thinking, an incomprehension of the situation following the announcement of the diagnosis. Nine pts had sleeping difficulties, changes in eating behavior, some annoying physical symptoms such a tremors, tight throat and heartbeat. Six pts expressed a loss of interests in activities accompanying emotional anesthesia. 12 pts showed distance from people with irritability and tantrums. Concerning the questions asked after day 0 of allogeneic HSCT and during hospitalization in the acute phase, we obtained the following results: 11 pts had extreme anxiety about the expected results in addition to sleeping difficulties. 11 pts suffered from change in eating behavior, a fear of not resuming a normal rhythm of life and a low self-esteem with underestimation. 20 pts talked about their need of psychological support and had a future plans which was a good sign away from depression. Concerning the financial question, all pts showed strong anguish because this problem has a huge impact on physical and mental health especially when treatment is delayed due to lack of funding, in addition to the appearance of other symptoms such depression, guilt, loss of self-esteem, and family conflicts.

Conclusions: Psychological aspects of transplantation show the specific questions and problems of each stage of the patient’s journey from the moment the decision to transplant is taken until after the transplant. Psychological support must be involved in the treatment of patients, before, during and after inpatient hospitalization for allogeneic HSCT. Each stage of the treatment has its difficulties and may have a different psychological impact.

Disclosure: Nothing to declare.

35 - Psychological Issues

P710 PATIENT CONCERNS AFTER HSCT: AN EVALUATION

Kate N. Montague-Hellen 1,2, Diana M. Greenfield2,1, John A. Snowden2,1, Aileen Nield2

1University of Sheffield, Sheffield, United Kingdom, 2Sheffield Teaching Hospital, Sheffield, United Kingdom

Background: Haemopoietic Stem Cell Transplants (HSCT) are increasingly used in the treatment of Acute Myeloid Leukaemia (AML), Acute Lymphoblastic Leukaemia (ALL), and Myelodysplastic Syndrome (MDS). Efforts to address the long term, post-transplant needs of this patient group is routinely assessed in clinical practice using a validated Holistic Needs Assessment questionnaire (The Sheffield Profile for Assessment and Referral to Care (SPARC)) and a subsequent care plan which includes, where appropriate, individualised, onward referrals.

Methods: 61 completed SPARC questionnaires were retrieved from electronic or hard copies of case notes of adult patients following an allogeneic HSCT for AML, ALL, and MDS. All were patients of the Sheffield Late Effects Clinic (LEC). The mean age at diagnosis is 41.1 years (SD 18.5), mean age at SPARC completion was 47.9 years (SD 15.4) and mean 10 years since treatment (range 2-28 years). Onward referrals from the LEC were systematically recorded.

Results: 49/61 (80.3%) reported moderate or significant concerns caused by physical symptoms and 34/61 (55.7%) reported moderate or significant concern caused by psychological symptoms in the last month. Several symptoms were reported more frequently in younger patients. The under 50s reported significantly more moderate or severe distress caused by concerns about changes in their appearance (23.7% v 4.4%; p = 0.0499), feeling that people do not understand them (18.4% v 0.0%; p = 0.03), and worrying about the effect of their illness on their family and other people (23.7% v 4.4%; 0.0499) than those ages 50 years and over. Tiredness and concerns with weight changes were amongst the most commonly reported concerns in the younger group with 21.1% (8/28) and 15.8% (6/38) of the under 50s respectively experiencing severe distress from these symptoms in the last month. In addition, 15.8% of under 50s reported severe concerns about the impact of their illness on their family and others.

Conclusions: Our evaluation identifies significant ongoing needs in this small cohort of HSCT survivors, with key findings in the younger cohort under the age of 50 during their recovery. The observation of severe distress was of particular concern. We therefore demonstrate the importance of personalised care involving routine assessment, prioritisation and discussion of holistic needs and plan of support. This may include onward referrals to address these identified unmet needs and parity of provision of psychological support needs addressing in clinical services.

Disclosure: Nothing to declare.

35 - Psychological Issues

P711 EMBEDDED PSYCHOLOGICAL SUPPORT IN A STEM CELL TRANSPLANT SERVICE: WHAT MATTERS MOST TO THOSE WHO USE IT

Jenna Love 1, Holly Dixon1

1St George’s Hospitals NHS Foundation Trust, London, United Kingdom

Background: It is well recognised that undergoing a stem cell transplant is psychologically challenging, and can have a significant long-lasting impact on an individual’s psychological functioning. As part of the evaluation of the impact of an embedded Anthony Nolan clinical psychologist in the stem cell transplant (SCT) service at St George’s Hospital, we wanted to understand the impact of psychological support from the perspective of those accessing it. Subjective experiences and personal reflections of patients were explored in order to evidence the nature and value of the psychological support for SCT patients.

Methods: Interviews were conducted with six SCT patients who had received psychological support. An opportunistic sample was selected from those who had completed, or nearly completed, sessions with the clinical psychologist and representation was sought across medical variables (see Table 1). Interviews were completed via telephone by an assistant psychologist not previously known to the participant, so that they could more fully reflect on their experiences and to reduce bias. Semi-structured interviews included questions about their access to and experience of psychological care, and the impact this had on their experience of SCT.

Table 1: Descriptors of participants

Male/female

Age group

Type and reason for SCT

Stage referred for psychology

Female

60–70

Autologous, myeloma

Pre-transplant (had sessions pre-transplant as outpatient, during as inpatient and post-transplant as outpatient)

Female

50–60

Autologous, myeloma

Pre-transplant (had sessions pre-transplant as outpatient, during as inpatient and post-transplant as outpatient)

Female

60–70

Autologous, myeloma

Pre-transplant (had sessions pre-transplant as outpatient, during as inpatient and post-transplant as outpatient)

Male

40–50

Allogeneic, lymphoma

Post-transplant, still ongoing medical issues (approx. 3 years post-transplant)

Female

40–50

Allogeneic, leukaemia

Post-transplant, well medically (approx. 2 years post-transplant)

Male

30–40

Allogenic, lymphoma

Post-transplant, still ongoing medical issues (approx. 3 years post-transplant)

Results: Themes that arose from participants included a real sense of feeling understood and validated in psychology sessions. They spoke of the benefits of an external space, where they could be vulnerable without eliciting emotion and worrying family and loved ones. Participants spoke about psychological support enabling them to develop strategies and alternate perspectives that helped during their transplant experience, as well as their life post-transplant, being able to use and apply these tools to aspects of their life including relationships, communication, adjustment, goals and employment. There was an on-going theme of the value of the psychologist being specialist in SCT and therefore having knowledge and expertise of the disease, the treatment and understandable concerns and worries that arise as a result. Those who were referred pre-transplant described that having inpatient support during the transplant was particularly helpful, providing continuity of care which wouldn’t have been possible if their psychological support was externally based. Participants thought that without psychological support they would have been more psychologically distressed, with several participants describing this as a ‘dark and scary’ place’, that for some, didn’t feel could be discussed with other members of the team. Therefore the psychologist represented a unique addition to their healthcare team.

Conclusions: This study highlights not only the benefit of psychological support for many patients having SCT, but starts to elucidate the specific factors that contributed to effectiveness, for example the importance of the psychologist being embedded and specialist in SCT. The results are preliminary and did not include those who did not access psychological support, or those who only had a small amount of contact with the psychologist, which can be explored in further studies. The information will be used to continue to develop the psychological service in our SCT service, with the patient’s views and experience at the heart of what we offer.

Disclosure: Nothing to declare.

35 - Psychological Issues

P712 PSYCHOLOGICAL FACTORS OF NONCOMPLIANT PARENTAL BEHAVIOR BEFORE BONE MARROW TRANSPLANTATION

Natalia Klipinina1

1Dmitry Rogachev National Medical Research Center of Pediatric Hematology, Oncology and Immunology, Moscow, Russian Federation

Background: The study of the psychological factors of non-compliant behavior of parents accompanying the treatment of children in pediatric oncology/immunology is extremely important to reduce the threat of interruption of treatment, as well as the emotional burnout of medical staff (Pai A.L.H. et al, 2018, Schulz G.L. et al, 2018).

Methods: The psychological difficulties experienced by parents with such a type of non-compliance behavior as postponing the decision to conduct HSCT in a child were analyzed. Parents (N = 21, mostly mothers) of patients with immunological and oncohematological diseases (from 3 to 16 years old) were examined, who were recommended to undergo HSCT as the main method of treatment at this stage. All parents demonstrated non-compliance behavior (assessed from 3 to 5 points in 5-points scale, score of 5 points was associated by doctors with a high risk of danger to the child), postponing the decision on HSCT. A semi-structured clinical interview was conducted with parents on the motivation for postponing their decision, expectations and ideas about the upcoming transplantation, interaction with staff, past medical experience of the family.

Results: Several factors were simultaneously identified that determine the motivation of parents to delay making a decision. 71.5% of parents spoke about the fear of losing a child as a result of transplantation. 66.6% of parents noted difficulties in taking responsibility (tried to outweigh the responsibility on the medical staff, demanded guarantees of the effectiveness of the procedure). Parents of children aged 12–16 (23.8%) noted that they postpone making a decision on transplantation because of the resistance of the children, referring to their unwillingness to put pressure and persuade the child. They described themselves as unable to influence the growing children and completely shifted the responsibility to them (“how I influence him, he / she is already an adult”, “let her decide”). 62% of the parents of this group often underestimated the importance of transplantation but outweighed the risks, contained erroneous ideas about it (“the child’s will change”, “he/she will become a stranger”). 52.4% of parents had negative experiences in the past (negative treatment of older children, death of children), which led to distrust of medical stuff. The majority of doctors (75%) with whom the problems of parental motivation were briefly discussed rated these data as important and valuable for subsequent dialogues with parents and opportunities to improve treatment compliance.

Conclusions: The results of the study draw our attention to the presence of specific patterns of parental behavior influencing the delay in making an important decision about child transplantation. These are a lack of partnerships, a tendency to paternalistic relations or to manipulate and shift responsibility (to doctors, growing children), difficulties in building trust, and gaps in awareness, deficit of support. Perhaps these factors can be used in further communication between the doctor-parent-patient as a target for increasing the level of compliance at the stage of making a decision. Also, the results once again emphasize the need to involve adolescents in decision-making discussions, and not just their parents.

Disclosure: Nothing to declare.

35 - Psychological Issues

P713 NARRATIVE-BASED MEDICINE ASSESSMENT DURING ALLOGENEIC HEMATOPOIETIC STEM CELL TRANSPLANTATION: A TOOL TO PROMOTE PSYCHOLOGICAL HEALTH?

Alessia Salemme 1, Domenico Adabbo1, Giuseppe Ciccarelli1, Carmine Colella1, Maria Carmen Di Vico1, Rosaria Gatta1, Gianpaolo Gargiulo1, Francesco D’Agostino1, Alessia Fiore1, Annamaria Vincenzi1, Fabrizio Pane1, Giorgia Battipaglia1

1Federico II University, Naples, Italy

Background: Psychological impact of allogeneic hematopoietic stem cell transplantation (allo-HSCT) can be immense and cause prolonged psychological distress. Therefore, psychological assessment and interventions have a high priority in preventing psychosomatic implications related to the procedure and evolution of allo-HSCT. Narrative-based medicine (NBM) approach offers an opportunity for deeper understanding of the patient’s emotions and psychological dynamics and can help guide interventions to promote psychological health.

Methods: Patients undergoing allo-HSCT between July 2020 and July 2022 in the Hematology Unit of University Federico II of Naples were recruited. Psychological interview was carried out at least 3 times a week and was accompanied by techniques such as collage on the disease and writing sessions, spaced one week apart. A final follow-up interview 3 months after the last writing session was held. Each writing session focused on a specific transplant phase (before, during and after hospitalization) and the associated feelings. Patients with severe psychiatric comorbidities and who did not speak Italian or English were excluded.

Results: A preliminary analysis of these narratives discussed with the patient during the clinical interview shows that there is not a unique behavioural pattern, thus determining a personalized approach with every patient, taking account his/her personal feelings. However, the moment of hospitalization marks the transition to an environment where time seems to stop abruptly. Hospital room is a “place full of emotions, encounters, disappointments, efforts, hopes and dreams”, where there is “absence of time and air”, but also “a place devoid of space, where the windows are small and sealed and the day to day is locked outside the door”. The beginning of conditioning therapy marks the relief from anxieties and second thoughts, but it is also the moment when “the train has already left the station”. Narrative analyses show that the most frequently used words are “isolation” and “loneliness”. High levels of distress are reflected in regression as a coping mechanism. Patients in their narratives report a disorientation regarding the allo-HSCT procedure considering it as a “lack of protection/safety since the main substances of the organism will be provided by another person outside of themselves”. This metamorphosis impacts not only hematopoiesis changings but also psychological behavior with patients reporting “modifications in their physical, cognitive, sexual, and interpersonal functioning”. A high level of expectations prior to allo-HSCT and current functional status was associated with high psychological distress.

Conclusions: NBM approach represents a valid tool to explore the subjective experience of patients undergoing allo-HSCT and may help in interpreting patients’ emotions, feelings and reactions during the different phases of this difficult path.

Disclosure: Nothing to declare.

35 - Psychological Issues

P714 PATIENT PERCEPTIONS OF THE PSYCHOLOGICAL SUPPORT OFFERED IN RELATION TO THEIR HAEMATOPOIETIC STEM CELL TRANSPLANT - AN EVALUATION

Anna Lagerdahl 1, Karolina Svatkova2, Eloise Dean2

1Great Western Hospitals NHS Foundation Trust, Swindon, United Kingdom, 2University of Bristol, Bristol, United Kingdom

Background: Psychological distress is common for people undergoing Haematopoietic Stem Cell Transplants (HSCT), and specialist psychological support is generally advocated for this patient group, to help prepare for and manage the psychological impact of treatment. Yet, very little guidance exists specifically on how this support should be provided and at which points during the HSCT process. The HSCT team at Great Western Hospital (GWH) have developed a best-practice psychological pathway, which involves a pre-transplant consultation for all patients prior to admission, followed by a post-transplant consultation.

Methods: Seventeen patients with Myeloma (N = 8) and Lymphoma (N = 9), undergoing HSCTs at GWH over a two-year period, took part in an evaluation examining their perceptions of the specialist psychological support they were provided routinely pre- and post-transplant. Data were collected using a mixed-methods self-report questionnaire, examining the helpfulness and timing of the psychological consultations, and the extent to which they helped participants prepare for their transplant. It should be noted that analysis of data in Year 1 (N = 8) resulted in some changes being made to the post-transplant consultation, which were implemented for participants who subsequently took part in the evaluation during Year 2 (N = 9).

Results: The majority of participants reported finding the pre-transplant consultation ‘Helpful’ (N = 8) or ‘Very helpful’ (N = 5). The timing of the consultation (two weeks pre-transplant) was deemed right for most, and the extent to which it helped prepare patients varied. No participants found the pre- or post-transplant consultations unhelpful. Qualitative data indicated that the pre-transplant consultations helped patients feel more prepared for the procedure in terms of coping strategies, resilience, information and security. Findings from Year 1 of the evaluation resulted in the timing of the post-transplant consultation being changed, from two weeks following transplant, to 3-4 weeks following discharge from hospital. Consequently, all of the nine participants from Year 2 of the evaluation found the timing of the post-transplant consultation right. The majority found the post-transplant consultation Helpful (N = 6) or Very Helpful (N = 1). Qualitative data highlighted the longer-term psychological impact of undergoing a HSCT, the difficulty in asking for support, and the importance of access to specialist psychological support.

Conclusions: The findings of this two-year evaluation of the specialist psychological support provided to individuals undergoing a HSCT at GWH, suggest that engaging in a routine pre-transplant psychological consultation approximately two weeks prior to admission is helpful in preparing patients for the transplant. Interim findings from Year 1 of the evaluation resulted in the timing of the post-transplant session being moved, from two weeks post-transplant to 3–4 weeks post-discharge from hospital. All patients who had their post-transplant consultation 3–4 weeks following hospital discharge reported the timing of this as right, and most of those patients found the post-transplant consultation helpful or very helpful. Qualitative data provided by the participants suggests routine specialist psychological support pre- and post-transplant is a valuable aspect of HSCT care, which enables patients to feel more prepared for the process and provides them with specialist support to process the longer-term psychological impact of their HSCT.

Disclosure: Not applicable.

35 - Psychological Issues

P715 IMPACT OF ALLO-HSCT IN ADHERENCE

Elmira Kolgaeva 1, Mikhail Drokov1, Dmitri Vybornykh1, Larisa Kuzmina1, Elena Parovichnikova1

1National Research Centre of Hematology Moscow Russian Federation, Moscow, Russian Federation

Background: Allogeneic hematopoietic stem cell transplantation (allo-HSCT) involves an intensive regimen that includes prolonged stays in hospital that can affect adherence.

Methods: We analyzed 68 patients who undergone allo-HSCT for oncohematology diagnosis (Acute myeloid leukemia n = 39, Acute lymphoblastic leukemia n = 29 patients. The median age—37 years (male—29, female—39). Medication commitment was studied by questionnaire KOP-25. The Wilcoxon signed-rank test was used for comparison between the two groups. Differences were considered statistically significant at p < 0.05.

Results: Median of adherence to medical care before allo-HSCT was 75% (65%–84%), day +30 after allo-HSCT—77% (64%–87%) (p > 0.05). The median adherence to lifestyle modification—64% (52%–78%), day +30 after allo-HSCT—64% (55%–77%) (p > 0.05). The adherence to drug therapy—81% (67%–90%) (p > 0,05), a day +30 after allo-HSCT—80% (64%–92%) (p > 0.05). Integral adherence to treatment before transplantation—75% (64%–81%), day +30 after allo-HSCT—74% (62%–86%) (p > 0.05).

Conclusions: Even such “traumatic” procedure as allo-HSCT did not affect baseline adherence. Evaluation of adherence before allo-HSCT can be acceptable period for adherence evaluation in allo-HSCT patients.

Disclosure: The authors declare no conflicts of interest.