Ice-cream used as cryotherapy during high-dose melphalan conditioning reduces oral mucositis after autologous hematopoietic stem cell transplantation.

Oral mucositis (OM) is one of the most frequent adverse events of high-dose conditioning chemotherapy with melphalan prior to autologous hematopoietic stem cell transplantation (AHSCT). It significantly reduces the patients' quality of life. One of the preventive strategies for OM is cryotherapy. We retrospectively analyzed whether commercially available ice-cream could prevent OM during the melphalan infusion. We retrospectively analyzed 74 patients after AHSCT to see whether there is any correlation between OM and cryotherapy (ice-cream), melphalan dose (140 mg/m2 or 200 mg/m2). The incidence of OM in our study inversely correlated with cryotherapy in the form of ice-cream. Out of 74 patients receiving conditioning chemotherapy with high-dose melphalan, 52 received cryotherapy. Fifteen patients in the cryotherapy group (28.84%) developed OM, whereas 13 patients (59.09%) developed it in the group without cryotherapy. In a multiple linear regression test cryotherapy remained a significant protective factor against OM (p = 0.02) We have also seen the relationship between melphalan dose with OM (p < 0.005). Cryotherapy in the form of ice-cream is associated with a lower rate of OM and, therefore, could potentially be used as a cost-effective, less burdensome, and easy to implement method in prevention of oral mucositis.

Desesperanza y su relación con el apoyo social percibido en pacientes peruanos con neoplasias hematológicas / Hopelessness and its relationship with perceived social support in Peruvian patients with hematological neoplasms

Objetivo: El propósito del presente estudio fue determinar la relación significativa entre el apoyo social y la desesperanza en pacientes peruanos con neoplasias hematológicas que se encuentren en alguna de las fases del tratamiento. Método: El estudio fue de tipo descriptivo-correlacional. La muestra estuvo conformada por 110 pacientes hematooncológicos de ambos sexos, con edades entre 16 a 25 años. Los instrumentos utilizados fueron la Escala Multidimensional de Apoyo Social Percibido (MSPSS) y la Escala de Desesperanza de Beck (BHS). Resultados: Se reportan niveles altos de apoyo social percibido (81%) y niveles normales de desesperanza (82%) en los pacientes hematooncológicos. El apoyo social percibido se correlaciona inversa y significativamente con la desesperanza, aunque en magnitudes bajas a moderadas. Cabe destacar que la dimensión Expectativa de desgracia en el futuro, no se correlaciona significativamente con el apoyo social percibido y sus dimensiones. Igualmente, la dimensión Creencias que los acontecimientos negativos son durables, no se correlaciona con la dimensión Apoyo de familia. Por otro lado, se encontró diferencias significativas del apoyo social percibido con el sexo y la religión, asimismo, la desesperanza con la edad, tiempo de diagnóstico y fase de tratamiento. Conclusión: El apoyo social percibido se relaciona con la desesperanza en pacientes hematooncológicos peruanos. Por tanto, se corrobora que el apoyo social que recibe el paciente ante la desesperanza de una enfermedad hematooncológica, sirve como soporte y tolerancia de dicha enfermedad y sus efectos durante el tratamiento (AU)

Objective: The aim of this study was to determine the significant relationship between social support and hopelessness in Peruvian patients with hematological neoplasms who are in any of the treatment phases. Method: The study was descriptive-correlational. The sample consisted of 110 hemato-oncological patients of both sexes, aged between 16 and 25 years. The instruments used were the Multidimensional Scale of Perceived Social Support (MSPSS) and the Beck Hopelessness Scale (BHS). Results: High levels of perceived social support (81%) and normal levels of hopelessness (82%) are reported in hemato-oncological patients. Perceived social support is inversely and significantly correlated with hopelessness, although in low to moderate magnitudes. However, the dimension Expectation of misfortune in the future, does not correlate significantly with the perceived social support and its dimensions. Likewise, the Beliefs that negative events are durable dimension did not correlate with the dimension Family support. On the other hand, significant differences were found in perceived social support with sex and religion, as well as hopelessness with age, time of diagnosis and treatment phase. Conclusion: The perceived social support is related to the hopelessness of Peruvian hemato-oncological patients. Therefore, it is corroborated that the social support that the patient receives when faced with the hopelessness of a hemato-oncological disease, serves as support and tolerance of said disease and its effects during treatment (AU)

Guided imagery relaxation in quality of life of patients undergoing hematopoietic stem cell transplantation: a quasi-experiment.

OBJECTIVE: The aim of this study was to evaluate the effects of the relaxation technique with guided imagery by means of virtual reality on health-related quality of life in patients undergoing hematopoietic stem cell transplantation. METHODS: A quasi-experiment conducted in a Bone Marrow Transplantation Service of a public hospital in southern Brazil. From October 2019 to October 2020, forty-two adult participants who underwent transplantation were included, 35 in the intervention group and seven in the control group. A guided imagery intervention, with audio guiding the relaxation associated with nature images in 360º, was performed during the hospitalization period. Data were collected on the first day of hospitalization, on the transplantation day, during the neutropenia stage, and at pre-hospital discharge. The Functional Assessment of Cancer Therapy-Bone Marrow Transplantation (FACT-BMT), Functional Assessment of Chronic Illness Therapy-Fatigue (FACIT-Fatigue) and Functional Assessment of Cancer Therapy-Neutropenia (FACT-N) were used to assess health-related quality of life, fatigue and neutropenia. Data were analyzed using the Generalized Linear Mixed Model for the evolution of the health-related quality of life assessments over time, considering the groups and stages. Pearson's correlation coefficient was adopted for the correlation analyses. RESULTS: Allogeneic transplantation was predominant: 28 (80%) in the intervention group and 5 (71.43%) in the control group. There were improvements in the health-related quality of life scores, although not significant. A significant difference was found among the stages (p <0.050) and a significant positive correlation (p <0.000) among the variables on general quality of life, additional concerns, fatigue and neutropenia in all stages. CONCLUSION: Patients undergoing hematopoietic stem cell transplantation suffer changes in their quality of life. Interventions based on integrative practices emerge as an option to minimize them. 
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Italian onco-haematological patients' preferences in bad news communication: a preliminary investigation.

BACKGROUND: The manner in which bad news is communicated in oncological contexts can affect patients' engagement, their coping strategies and therapeutic compliance. Although this topic has been broadly investigated since the nineties, to the best of our knowledge, little has been written about Italian patients' experiences and preferences concerning what the oncologists should disclose and how they should intimate patients about their health conditions in different stages of oncological disease. METHODS: In an attempt to fill this gap, an online self-report questionnaire was administered to a sample of Italian onco-haematological patients. Data were analysed both qualitatively (by a content analysis) and quantitatively (by descriptive analysis and Generalized Linear Mixed Model). RESULTS: While the majority of patients elected to know the truth during their clinical course, a polarisation between those arguing that the truth be fully disclosed and those claiming that the truth be communicated in a personalised way was observed at the attitude level. Among demographic variables accounted for, age seems to most affect patients' preferences. Indeed, younger Italian patients decidedly reject concealment of the truth, even when justified by the beneficence principle. This result could be a reaction to some protective and paternalistic behaviours, but it could even reflect a relation according to which the more the age increases the more the fear of knowing rises, or an intergenerational change due to different ways of accessing the information. The qualitative analysis of the final open-ended question revealed three main sources of problems in doctor-patient encounters: scarcity of time, absence of empathy and use of not-understandable language that makes it difficult for patients to assume a more active role. CONCLUSIONS: The results of the present study, which represents a preliminary step in the subject investigation, will be deployed for the construction and validation of a more sophisticated questionnaire. Better awareness of the Italian onco-haematological patients' preferences concerning bad news communication and truth-telling could be useful in adopting more suitable medical practices and improving doctor-patient relationships.

Dietary supplement use in ambulatory cancer patients: a survey on prevalence, motivation and attitudes.

PURPOSE: Patients with cancer often believe dietary supplements (DS) such as micronutrients and botanical products to be health supporting and non-toxic despite growing concerns regarding potential pharmacological interactions. Studies on the prevalence of DS use among patients with cancer are heterogeneous and mainly conducted at university-based cancer centers. This survey focused on a particular cancer patient group treated in an ambulatory setting without regular access to professional nutritional counselling. METHODS: Patients with a history of cancer or hematological malignancy were included in this survey. A self-reported questionnaire was used to evaluate the different aspects of DS use, changes in dietary habits and patients' demographic characteristics. RESULTS: Almost every second patient reported using DS (47.2%). Women (56.3%), patients with an academic degree (56.0%) and non-smokers (84.8%) were more inclined to use DS. Along with magnesium (16.6%), calcium (14.3%), multivitamins (12.0%) and vitamin C (9.4%), use of herbal supplements (12.6%) was common. Women (84.8% vs. 74.9% of men, p = < 0.001) and patients younger than 65 years (84.4% vs. 77.2% of patients > 65 y, p = 0.002) sought dietary advice more often. Support of the immune system was the main reason for DS use (26.4%) and a relevant number of patients (49.6%) reported to have changed their dietary habits following cancer diagnosis. CONCLUSION: DS use is common among patients with cancer treated in an ambulatory setting. This finding should encourage oncologists to implement detailed questioning about DS use and dietary habits to prevent potential interactions and offer substantial advice.

Cancer survivorship in hematologic malignancies: Lifestyle changes after diagnosis.

BACKGROUND: Studies show that patients make lifestyle changes soon after certain solid tumor diagnoses, suggesting that this may be a teachable moment to motivate and promote healthy behaviors. There is a paucity of data regarding changes made after a diagnosis of a hematologic malignancy. METHODS: A cross-sectional study of 116 patients at a community oncology center who completed anonymous questionnaires was performed. Questions addressed lifestyle choices made with respect to smoking, alcohol consumption, recreational drug use, diet, and exercise habits before and after diagnosis of a hematologic malignancy. Support systems utilized, including psychiatry services, were also assessed. RESULTS: Patients exhibited significant reduction in smoking behavior (Χ2  = 31.0, p < 0.001). 82.4% (n = 14) of one pack per day smokers quit between the time periods, with nearly all smokers showing a reduction after diagnosis. Alcohol use overall did not change significantly, however, 10.3% (n = 12) of patients reported quitting drinking completely between time periods. Changes in dietary intake and exercise were not statistically significant overall. Utilization of external support systems correlated with improved diet as well as decrease in total smoking years. CONCLUSIONS: This study demonstrates that patients exhibited significant lifestyle changes after being diagnosed with a hematologic malignancy. Clinicians should take advantage of this 'teachable moment' to educate patients about positive health behavior changes. Advances in cancer therapeutics have led to an increase in cancer survivors, this education is crucial in reducing the risk of developing chronic comorbidities as well as secondary malignancies.

Screening supportive care needs, compliance with exercise program, quality of life, and anxiety level during the COVID-19 pandemic in individuals treated with hematopoietic stem cell transplantation.

PURPOSE: The primary aim was to assess supportive care needs, compliance with home exercise program, quality of life level (QOL), and anxiety level during the COVID-19 pandemic in individuals treated with hematopoietic stem cell transplantation (HSCT). The secondary aim was to investigate demographic and medical factors associated with the recorded outcomes. METHODS: The present study included individuals treated with HSCT and previously referred to physical therapy. The data were collected by interviews with the participants on the phone. Supportive care needs were assessed using the Supportive Care Needs Survey-Short Form 29TR. Compliance with the exercise program was recorded as the number of patients regularly performed strengthening and stretching exercises and the ratio of the walking duration to the recommended duration. The European Cancer Research and Treatment Organization Quality of Life Questionnaire-Cancer30 was used to assess the QOL. The State-Trait Anxiety Inventory-I and the Visual Analogue Scale were used to assess anxiety level. RESULTS: The present study included 101 individuals treated with HSCT. The psychological and physical supportive care needs were predominant in participants. Compliance with exercise program was low. General anxiety level was low, yet anxiety about COVID-19 was moderate level in participants. Supportive care needs were related to female gender, performance level, time since HSCT, and QOL level (p Ë‚ 0.05). Anxiety level was correlated with supportive care needs, COVID-19-related anxiety, and QOL (p Ë‚ 0.05). Compliance with exercise program was associated with age, performance level, and QOL (p Ë‚ 0.05). CONCLUSION: Our results offer that supportive telehealth interventions should be considered during the COVID-19 pandemic for individuals treated with HSCT to decrease unmet supportive care needs and isolation-related physical inactivity.

Free of malignancy but not of fears: A closer look at Damocles syndrome in survivors of hematologic malignancies.

Fear of cancer recurrence (FoR) is an important yet underestimated long term sequela that many cancer survivors suffer from. The continuous state of uncertainty the survivors might go through can lead to a serious impact on their quality of life (QoL), which is collectively referred to as Damocles syndrome. Given the increasing numbers of cancer survivors, it is crucial to understand the different psychological issues that face them, including Damocles syndrome. Herein, we review the current literature of Damocles syndrome specifically in hematologic cancer survivors. Although with inconsistent terms, current literature demonstrates the impact and the prevalence of Damocles syndrome on QoL of survivors of leukemia, lymphoma, and hematopoietic cell transplant. Interventional studies are very limited in this area. Moreover, hematologic malignancy survivors can also meet the diagnostic criteria of other psychiatric diseases, including depression, anxiety, and post-traumatic stress disorder, wherein they should be managed accordingly. It is important to increase the awareness about Damocles syndrome and screen patients for it and other related psychological disorders. Additionally, this review has shown the need for standardization of Damocles syndrome definitions. Finally, the lack of interventional studies that target survivors' psychosocial challenges calls for prospective research to better address this rising problem.

"Home wasn't really home anymore": Understanding caregivers' perspectives of the impact of blood cancer caregiving on the family system.

PURPOSE: Research on the impact of family cancer caregiving is primarily dyadic in focus. How caregiving affects the larger family system is less understood, yet knowing this is vital to developing supportive resources for caregivers, patients, and their families. To better understand how blood cancer caregiving impacts the family system, we explored the experiences of adult child caregivers of diagnosed parents and parent caregivers of diagnosed children. METHODS: We conducted semi-structured interviews with 39 midlife parent and adult child caregivers of patients with leukemia or lymphoma. Using a family systems theory lens, we conducted a thematic analysis using the constant comparative method to identify how caregiving impacts the larger family system. RESULTS: Caregivers ranged from age 30 to 64 (M = 43). They described four ways that caregiving impacted themselves and the larger family system: (1) disruption of home life, (2) emotional (dis)connection, (3) juggling competing roles, and (4) developing resiliency and intimacy. Perspectives within each category differed based on their relational role to the patient or in the broader family. CONCLUSIONS: Themes identify ways to provide support to both caregiver types. Support care resources could help families navigate gains and losses impacting the family system after a blood cancer diagnosis. Both caregiver types described experiencing (and/or their family experiencing) a loss in relational connection, feeling alone, and members distancing themselves. Both caregiver types also described gains in family functioning, like strengthened bonds and togetherness. Findings validate the need for family-centered support with key areas to address for healthy family functioning.

Clinical, social, and psycho-oncological needs of adolescents and young adults (AYA) versus older patients following hematopoietic stem cell transplantation.

PURPOSE: To analyze demand for information and advice as well as medical, psychological, and social needs of adolescents and young adults (AYAs) and older patients (non-AYA) after hematopoietic stem cell transplantation (HSCT). METHODS: A questionnaire was sent to 100 HSCT recipients comprising n = 50 AYAs (aged 19-39 years) and n = 50 non-AYAs (> 39 years). The questionnaire covered the categories: (a) patient characteristics; (b) need for advice, on medical, psychological, and social care topics; (c) medical, psychological, and social needs, and (d) preferred forms and channels of information. RESULTS: The return rate was 65%. 62.5% of patients indicated medical needs; 41.1% psychological needs, and 64.9% had needs concerning social issues. Among medical aspects, aftercare was important to both groups. Nutrition was of highest interest for AYA, while non-AYAs identified fatigue and vaccination as their most pressing concerns. Body shape/sexuality and relaxation techniques were the most common psychological issues for AYA, while coping strategies were important for both cohorts. Family, relationship and friends were of less interest in both groups. Rehabilitation and premature retirement were of highest interest for both cohorts. The preferred mode of communicating advice was one-to-one conversation in a quiet environment as opposed to informational sessions. CONCLUSION: Despite well-established aftercare programs following HSCT, many patients describe unmet needs regarding medical, psychological, and social policy issues. AYA and non-AYA differ in informational needs after HSCT, and, therefore, age-appropriate informational materials are necessary. Particularly AYA may profit from information covering body-shape/sexuality and nutrition, while both cohorts require information covering coping strategies and aftercare.

The Interaction Between Hematological Cancer Patients and Family Caregivers and Their Life Changes: A Qualitative Dyadic Approach.

BACKGROUND: Diagnosis of hematological cancer affects patients and caregivers as a unit. Few studies have focused on the relationship between hematological cancer patients and their caregivers. OBJECTIVE: To explore (a) the interaction between patients receiving treatment for hematological cancer in a hematology-oncology clinic and their family caregivers and (b) perceived changes in lives of patients receiving treatment for hematological cancer in a hematology-oncology clinic and their family caregivers. METHODS: We used a qualitative descriptive design with a dyadic approach. The study sample included 11 patients with hematological cancer and 11 family caregivers selected through purposive sampling. In-depth interviews were conducted using a semistructured interview format. RESULTS: As a result of a content analysis, 3 themes emerged: hidden emotions, companionship, and life changes. Both the patients and the family caregivers described coping by hiding their feelings, thoughts, and needs and reducing communication with each other. Dyad members described commitment to each other and an increase in confidence. In addition, the patients and the family caregivers experienced changes in their roles and perspectives during the diagnosis and treatment process. CONCLUSION: Patients with hematological cancer and family caregivers need nurses' support. Nurses should be prepared to provide patient-caregiver-based interventions. IMPLICATION FOR PRACTICES: It is important that nurses take action to strengthen the relationship between patients and their caregivers, particularly with a focus on carrying out interventions to improve communication between them. Nurses can also strengthen dyads' coping by drawing attention to positive developments in their perspectives and relationships.

Social Media in the Pediatric Hematology/Oncology Clinical Space.

Parents and families of children with cancer and blood disorders increasingly turn to social media to connect with families facing similar challenges. These multidirectional interactions on social media are not only sources of psychosocial support but frequently sources of medical information. Consequently, such interactions have the potential to meaningfully impact the relationships between parents, children, and pediatric hematology/oncology providers. The 3 case studies analyzed here illustrate the spectrum of ethical and communication issues that arise when families' use of social media enters the pediatric clinical space, including questions related to trust and mistrust, misinformation, patient privacy and confidentiality, and allocation of resources, including time. Ideal approaches to resolving dilemmas related to parental social media use are those that maintain respect, build trust, and acknowledge the changing culture. Social media use is now the norm. Promoting transparent discussions of its use between families and health professionals is, therefore, the key to optimizing health outcomes for children whose parents turn to social media. Mutual respect, collaboration, and long-term relationships are also potential antidotes to the spread of misinformation and mistrust through social media.

The effect of virtual reality on pain, fear, and anxiety during access of a port with huber needle in pediatric hematology-oncology patients: Randomized controlled trial.

PURPOSE: Port needle insertions are painful and distressing for Pediatric Hematology-Oncology patients. Virtual Reality (VR) can be used during needle-related procedures in these patients. This study aimed to investigate the effect of VR distraction during access to the venous port with a Huber needle in reducing needle-related pain, fear, and anxiety of children and adolescents with cancer. METHODS: This randomized controlled study used a parallel trial design guided by the CONSORT checklist. The sample of children (n = 42) was allocated to the VR group (n = 21) and the control group (n = 21). Port needle-related pain was assessed using the Wong-Baker Faces Pain Rating Scale after the procedure. Before and after the port needle insertion procedure, anxiety and fear assessed using self- and parent-report using the Children's Anxiety Meter and Child Fear Scale. The primary outcome was the patient-reported pain scores after the procedure and fear and anxiety scores before and after the procedure. Pain, anxiety, and fear scores of the two groups and within groups were analyzed and also Spearman correlation analysis was used. RESULTS: Self-reported pain scores of patients in the VR and control group were 2.4 ± 1.8 and 5.3 ± 1.8, respectively. This study found a statistically significant difference between groups in pain scores (p < .001). A statistically significant difference was found between groups according to the self- and parent-reported fear and anxiety scores after the procedure. Self-reported fear scores in the VR and control group were 0.8 ± 0.9, 2.0 ± 1.0, self-reported anxiety scores were 2.9 ± 2.0, 5.4 ± 2.0, respectively (p < .001). CONCLUSION: Virtual reality is an effective distraction method in reducing port needle-related pain, fear, and anxiety in Pediatric Hematology-Oncology patients. ClinicalTrials.gov NCT04093154.

[Study of representations of end-of-life platelet transfusion by its protagonists: Patients, nurses and hematologic oncologists]. / Étude des représentations de la transfusion plaquettaire en fin de vie par ses acteurs : patients, infirmiers et médecins d'hématologie.

INTRODUCTION: End-of-life platelet transfusion practice in onco-hematology is subjective and depends on representations shared by patients, nurses and hematologists. This study aims to describe these representations of platelet transfusion in a context of a severe and advanced hematologic malignancy through the social representation of its protagonists. METHODS: A qualitative study, using the associative network method and including three groups of 15 participants (patients with an advanced hematologic malignancy, regularly transfused in platelet concentrates; nurses and hematologic oncologists) from four hematology centers was conducted between February and April 2019. Analysis was carried out using IraMuTeQ software. RESULTS: Patients expect platelet transfusion to have a direct beneficial impact on their health and highlight human relations. Nurses aim at the patient's well-being, in his or her individuality, and at respecting the transfusion protocol. Physicians seek to relieve symptoms by taking into account a multitude of decision-making factors. The textual clustering method, nuances those previous results and individualizes four different orientations, independent of groups: dependency, singularity, subjectivity and neutrality. DISCUSSION: The perception of the social representations related to platelet transfusion at the end-of-life should make it possible to adapt the discourse to the preferred orientation of the speaker and could be an asset in goals of care discussion with patients as well as with teams in charge of palliative care.

Sexuality and quality of life of patients with hematologic malignancy and hematopoietic stem cell transplantation: a critical review.

PURPOSE: This systematic review aims to investigate the relationship between sexuality and quality of life (QoL) of patients with hematological malignancies that underwent hematopoietic stem cell transplantation (HSCT). METHODS: A bibliographic search was carried out through PubMed database with the following terms for the years 2008 to 2019: sexuality, sexual function, quality of life, hematopoietic stem cell transplantation. RESULTS: Fourteen studies were included in the review. They present heterogeneity regarding measurement tools, time of measurement and type of HSCT. The common theme that emerged from most studies is that sexual dysfunction is reported after years of HSCT and it negatively impacts QoL. Women and allogenic HSCT with its consequences (graft versus host disease) were risk factors for sexual dysfunction. Sexual activity of HSCT patients was decreased at first but resumed after the first year. The most common sexual problems reported were erectile dysfunction for men and lack of desire for women. In the majority of studies the amelioration of physical, psychological symptoms and sexual function lead to improvement in QoL over time. CONCLUSIONS: Sexuality and QoL of patients are affected by HSCT in varying degrees, and seems to be a significant and positive correlation between sexuality and QoL. However, with weaknesses and shortcomings in the revised studies' methodology (sample sizes, type of HSCT, attrition rates etc.), results are difficult to generalize.

Fear of cancer recurrence following allogeneic haematopoietic stem cell transplantation (HSCT) for haematological malignancy: A cross-sectional study.

PURPOSE: The aim of this study was to quantify the prevalence of Fear of Cancer Recurrence (FCR) in patients with a prior haematology malignancy surviving more than one year post allogeneic haematopoietic stem cell transplantation (HSCT), and to identify the demographic, medical and psychological factors associated with FCR occurrence. METHOD: Participants were adult allogeneic HSCT recipients who had undergone the procedure for acute leukaemia or other haematological malignancy between the years 2000-2012 in Sydney, Australia. They completed a purpose designed survey and six other validated instruments which assessed FCR, psychological functioning, quality of life, demographic, social and clinical variables. RESULTS: Of the 364 respondents, approximately 11% of the sample lived with severe FCR while only 5% of subjects reported having no FCR. Variables significantly associated with higher FCR included unemployment, a shorter time (years) post-transplant, not attending to health screening (PAP smear), a secondary diagnosis of skin cancer, younger age, referral to a psychiatrist and taking psychotropic medication. Higher psychological distress (depression, anxiety, stress) and lower quality of life made a significant contribution to the prediction of FCR. CONCLUSIONS: Post HSCT follow-up care should include an assessment and discussion regarding FCR to balance both realistic and unrealistic cancer recurrence risks. Managing FCR is one of the most ubiquitous unmet needs of survivors of haematological disease and it is important that HSCT nurses are both aware of the fear, and are equipped with knowledge on how to help patients navigate it with realistic expectations.

The impact of pediatric hematopoietic stem cell transplant timing and psychosocial factors on family and caregiver adjustment.

BACKGROUND: The impact of pediatric hematopoietic stem cell transplant (HCT) on family functioning varies, but little is known about how the timing of HCT in children's treatment course contributes to this variability. This study examines how preexisting child, sibling, and family problems, the length of time between diagnosis to HCT, and children's age at HCT are associated with family and caregiver functioning. PROCEDURE: Caregivers (n = 140) of children (≤18 years old) scheduled to undergo their first HCT completed the Psychological Assessment Tool-HCT and the Impact on Family Scale. Treatment information was extracted from electronic medical records. A bootstrapped multivariate path analysis was used to test the hypotheses. RESULTS: More preexisting family problems related to greater caregiver perceived negative impact of their child's HCT across family and caregiver functioning domains. Less time between diagnosis and HCT was associated with greater caregiver personal strain, particularly for those with younger children undergoing HCT. Younger child age at HCT was also associated with a larger negative impact on family social functioning. CONCLUSIONS: Families with preexisting problems are the most at-risk for experiencing negative impacts related to their child's HCT. The timing of a child's HCT within their treatment course and the child's age during HCT may impact families' social functioning and caregiver adjustment. Screening families for preexisting family problems, particularly for families with young children or who are abruptly learning of their child's need for an HCT, may assist providers in identifying families who would benefit from earlier or more intensive psychosocial support.

Changes in social support among patients with hematological malignancy undergoing hematopoietic stem cell transplantation in Souzhou, China.

BACKGROUND: Evidence regarding social support in patients is mostly from cross-sectional studies. Very few studies have focused on the change in social support systems before and after hematopoietic stem cell transplantation. METHODS: A total of 191 patients were investigated before transplantation and at 30, 90 and 180 days post-transplantation. The social support for patients was evaluated by the Perceived Social Support Scale (PSSS). RESULTS: The overall PSSS scores showed a continuous decline in means from 71.29 ± 9.73 before the transplantation to 69.44 ± 10.61, 68.73 ± 10.04, and 66.37 ± 12.02 at 30, 90 and 180 days post-transplantation, respectively. In comparison to the baseline, the overall PSSS scores decreased significantly at 90 and 180 days post-transplantation (P < .05). The Generalized Estimated Equation (GEE) analysis found that patients with no transplant-related complications, higher household income, and better educational status had preferable social support. CONCLUSION: Social support presented a marked downward trend during the six month period. Patients with no transplant-related complications, higher household income and better educational status had preferable social support. Therefore, social support as a high-priority quality of life should be given close attention in the early phase of transplantation. Positive measures should be taken to improve social support in the early phase of transplantation especially among individuals undergoing this procedure for the first time.