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1.
Support Care Cancer ; 32(7): 475, 2024 Jul 02.
Article in English | MEDLINE | ID: mdl-38954081

ABSTRACT

PURPOSE: Financial toxicity is used to describe the financial hardship experienced by cancer patients. Financial toxicity may cause negative consequences to patients, whereas little is known in Chinese context. This study aimed to explore the level of financial toxicity, coping strategies, and quality of life among Chinese patients with hematologic malignancies. PATIENTS AND METHODS: We conducted a prospective, observational study among 274 Chinese patients with hematologic malignancies from November 2021 to August 2022 in Sun Yat-sen University Cancer Center. Clinical data were extracted from electronic clinical records. Data on financial toxicity, coping strategies, and quality of life were collected using PRO measures. Chi-square or independent t test and multivariate logistic regression were performed to explore the associated factors of financial toxicity and quality of life, respectively. Effects of financial toxicity on coping strategies were examined using Chi-square. RESULTS: The mean age of the participants was 50.2 (± 14.6) years. Male participants accounted for 57.3%. About half of the participants reported high financial toxicity. An average median of ¥200,000 on total medical expenditures since the diagnosis was reported. The average median monthly out-of-pocket health expenditure relating to cancer treatment was ¥20,000 (range ¥632-¥172,500) after reimbursement. Reduce daily living expenses (64.9%), borrowing money (55.7%), and choosing cheaper regimens (19.6%) were the commonly used strategies to cope with financial burden. Financial toxicity was negatively associated with quality of life (ß = 0.071, P = 0.001). CONCLUSIONS: Financial toxicity was not uncommon in patients with hematological malignancies. Reducing daily living expenses, abandoning treatment sessions, and borrowing money were the strategies commonly adopted by participants to defray cancer costs. Additionally, participants with high level of financial toxicity tended to have worse quality of life. Therefore, actions from healthcare providers, policy-makers, and other stakeholders should be taken to help cancer patients mitigate their financial toxicity.


Subject(s)
Adaptation, Psychological , Health Expenditures , Hematologic Neoplasms , Quality of Life , Humans , Male , Hematologic Neoplasms/psychology , Hematologic Neoplasms/therapy , Hematologic Neoplasms/economics , Female , Cross-Sectional Studies , Middle Aged , Prospective Studies , Adult , China , Health Expenditures/statistics & numerical data , Aged , Cost of Illness , Financial Stress/psychology , Coping Skills
2.
BMC Complement Med Ther ; 24(1): 228, 2024 Jun 12.
Article in English | MEDLINE | ID: mdl-38867235

ABSTRACT

AIM: This study was conducted to determine the effect of music on the pain, anxiety, and comfort levels of patients who underwent bone marrow aspiration and biopsy. METHODS: This study was conducted on patients with hematological malignancies. Music was used with the intervention group. Patients' pain, anxiety, and comfort levels were measured. In addition, qualitative data were obtained through in-depth interviews with patients. RESULTS: A significant difference (p < 0.05) was found between the experimental and control groups regarding pain, comfort and anxiety levels following the application of music. It was found that there was a negative correlation between comfort and pain (r=-0.442 p < 0.001) and between comfort and anxiety (r=-0.544 p < 0.001). As a result of qualitative interviews, patients mentioned the relaxing effect of music and the reduction of anxiety and pain levels. They also stated that music can be utilized as an alternative method. CONCLUSION: According to the results of the present study, music reduced the pain and anxiety levels of the patients in bone marrow aspiration and biopsy and increased their comfort levels. We can say that music can be used in the clinic as a non-pharmacological method for pain, anxiety and comfort. CLINICAL TRIALS NUMBER: NCT05895357 (Date:08/06/2023).


Subject(s)
Anxiety , Music Therapy , Adult , Aged , Female , Humans , Male , Middle Aged , Young Adult , Anxiety/therapy , Biopsy , Bone Marrow , Hematologic Neoplasms/therapy , Hematologic Neoplasms/psychology , Pain/psychology , Pain Management/methods , Pain Measurement , Patient Comfort , Turkey
3.
Support Care Cancer ; 32(7): 465, 2024 Jun 26.
Article in English | MEDLINE | ID: mdl-38926198

ABSTRACT

PURPOSE: Haematologic malignancies for the most part are diseases of the elderly. Haematopoietic stem cell transplantation (HSCT) remains the only potentially curative strategy for many patients but carries substantial morbidity and mortality risks, particularly in frail or co-morbid patients. Pre-transplant optimisation of key targets through prehabilitation may have significant clinical impact. METHODS: We utilised qualitative methodology (semi-structured interviews) to gain insights and understanding of the perceptions of medical, nursing and allied health professionals towards prehabilitation before haematopoietic cell transplantation to optimise candidacy in older adults. Thematic analysis was performed using a qualitative descriptive approach completed in duplicate by two researchers. RESULTS: Between August and October 2023, eleven health professionals participated from four large cancer centres across the island of Ireland (n = 3 consultant haematologists, n = 7 specialist haematology nurses and n = 1 senior haematology physiotherapist). Four major themes were identified. The themes comprehensive biopsychosocial care and increasing demand for transplant in older patients highlight the unique challenges impacting older adults who receive HSCT. The multimodality pathways of care theme highlights the heterogeneity of treatment pathways across different clinical sites and disease types. This has implications for the prehabilitation: logistics and benefits theme, which indicated strong support for prehabilitation but emphasised that implementation must consider national reach and context. CONCLUSIONS: There is broad national multidisciplinary interest in the development of prehabilitation programmes for patients being considered for transplant. Our results will inform the development of services in this area in consideration of national reach, malignancy-specific pathways and the unique factors associated with older age.


Subject(s)
Hematopoietic Stem Cell Transplantation , Qualitative Research , Humans , Hematopoietic Stem Cell Transplantation/methods , Hematopoietic Stem Cell Transplantation/psychology , Aged , Ireland , Male , Female , Attitude of Health Personnel , Hematologic Neoplasms/therapy , Hematologic Neoplasms/psychology , Preoperative Exercise , Middle Aged , Health Personnel/psychology , Adult , Preoperative Care/methods , Interviews as Topic
4.
J Natl Compr Canc Netw ; 22(2D)2024 Jun.
Article in English | MEDLINE | ID: mdl-38862012

ABSTRACT

BACKGROUND: Allogeneic hematopoietic stem cell transplantation (HSCT) survivors experience significant psychological distress and low levels of positive psychological well-being, which can undermine patient-reported outcomes (PROs), such as quality of life (QoL). Hence, we conducted a pilot randomized clinical trial to assess the feasibility and preliminary efficacy of a telephone-delivered positive psychology intervention (Positive Affect for the Transplantation of Hematopoietic stem cells intervention [PATH]) for improving well-being in HSCT survivors. METHODS: HSCT survivors who were 100 days post-HSCT for hematologic malignancy at an academic institution were randomly assigned to either PATH or usual care. PATH, delivered by a behavioral health expert, entailed 9 weekly phone sessions on gratitude, personal strengths, and meaning. We defined feasibility a priori as >60% of eligible participants enrolling in the study and >75% of PATH participants completing ≥6 of 9 sessions. At baseline and 9 and 18 weeks, patients self-reported gratitude, positive affect, life satisfaction, optimism, anxiety, depression, posttraumatic stress disorder (PTSD), QoL, physical function, and fatigue. We used repeated measures regression models and estimates of effect size (Cohen's d) to explore the preliminary effects of PATH on outcomes. RESULTS: We enrolled 68.6% (72/105) of eligible patients (mean age, 57 years; 50% female). Of those randomized to PATH, 91% completed all sessions and reported positive psychology exercises as easy to complete and subjectively useful. Compared with usual care, PATH participants reported greater improvements in gratitude (ß = 1.38; d = 0.32), anxiety (ß = -1.43; d = -0.40), and physical function (ß = 2.15; d = 0.23) at 9 weeks and gratitude (ß = 0.97; d = 0.22), positive affect (ß = 2.02; d = 0.27), life satisfaction (ß = 1.82; d = 0.24), optimism (ß = 2.70; d = 0.49), anxiety (ß = -1.62; d = -0.46), depression (ß = -1.04; d = -0.33), PTSD (ß = -2.50; d = -0.29), QoL (ß = 7.70; d = 0.41), physical function (ß = 5.21; d = 0.56), and fatigue (ß = -2.54; d = -0.33) at 18 weeks. CONCLUSIONS: PATH is feasible, with promising signals for improving psychological well-being, QoL, physical function, and fatigue in HSCT survivors. Future multisite trials that investigate PATH's efficacy are needed to establish its effects on PROs in this population.


Subject(s)
Hematopoietic Stem Cell Transplantation , Psychology, Positive , Quality of Life , Humans , Hematopoietic Stem Cell Transplantation/psychology , Hematopoietic Stem Cell Transplantation/methods , Hematopoietic Stem Cell Transplantation/adverse effects , Female , Male , Middle Aged , Pilot Projects , Adult , Psychology, Positive/methods , Transplantation, Homologous , Hematologic Neoplasms/therapy , Hematologic Neoplasms/psychology , Aged , Survivors/psychology , Cancer Survivors/psychology
5.
Trials ; 25(1): 392, 2024 Jun 18.
Article in English | MEDLINE | ID: mdl-38890709

ABSTRACT

BACKGROUND: Hematopoietic cell transplantation (HCT) is a highly invasive and life-threatening treatment for hematological neoplasms and some types of cancer that can challenge the patient's meaning structures. Restoring meaning (i.e., building more flexible and significant explanations of the disease and treatment burden) can be aided by strengthening psychological flexibility by means of an Acceptance and Commitment Therapy (ACT) intervention. Thus, this trial aims to examine the effect of the ACT intervention on the meaning-making process and the underlying mechanisms of change in patients following HCT compared to a minimally enhanced usual care (mEUC) control group. The trial will be enhanced with a single-case experimental design (SCED), where ACT interventions will be compared between individuals with various pre-intervention intervals. METHODS: In total, 192 patients who qualify for the first autologous or allogeneic HCT will be recruited for a two-armed parallel randomized controlled trial comparing an online self-help 14-day ACT training to education sessions (recommendations following HCT). In both conditions, participants will receive once a day a short survey and intervention proposal (about 5-10 min a day) in the outpatient period. Double-blinded assessment will be conducted at baseline, during the intervention, immediately, 1 month, and 3 months after the intervention. In addition, 6-9 participants will be invited to SCED and randomly assigned to pre-intervention measurement length (1-3 weeks) before completing ACT intervention, followed by 7-day observations at the 2nd and 3rd post-intervention measure. The primary outcome is meaning-related distress. Secondary outcomes include psychological flexibility, meaning-making coping, meanings made, and well-being as well as global and situational meaning. DISCUSSION: This trial represents the first study that integrates the ACT and meaning-making frameworks to reduce meaning-related distress, stimulate the meaning-making process, and enhance the well-being of HCT recipients. Testing of an intervention to address existential concerns unique to patients undergoing HCT will be reinforced by a statistically rigorous idiographic approach to see what works for whom and when. Since access to interventions in the HCT population is limited, the web-based ACT self-help program could potentially fill this gap. TRIAL REGISTRATION: ClinicalTrials.gov ID: NCT06266182. Registered on February 20, 2024.


Subject(s)
Acceptance and Commitment Therapy , Hematopoietic Stem Cell Transplantation , Randomized Controlled Trials as Topic , Humans , Hematopoietic Stem Cell Transplantation/psychology , Acceptance and Commitment Therapy/methods , Treatment Outcome , Internet-Based Intervention , Single-Case Studies as Topic , Adaptation, Psychological , Time Factors , Patient Education as Topic/methods , Health Knowledge, Attitudes, Practice , Quality of Life , Hematologic Neoplasms/therapy , Hematologic Neoplasms/psychology
6.
Eur J Pediatr ; 183(8): 3377-3388, 2024 Aug.
Article in English | MEDLINE | ID: mdl-38755309

ABSTRACT

Evidence-based literature recognizes that the different degrees of agreement between a child self-report and a proxy-report depend on the characteristics of the domains, the child's age and illness, the proxy's own perspective on QoL, and family attendance during the child's hospitalization. This study aims to determine the degree of agreement between proxy-reports and child self-reports on quality of life (QoL) for children with hematologic malignancy ranging in age from 5 to 18 years who are undergoing treatment. We retrieved clinical QoL data from a study titled "Dynamic change in QoL for Vietnamese children with hematologic malignancy" from April 2021 to December 2022. To evaluate the magnitude of agreement between self-reports and proxy-reports, intraclass correlation coefficients (ICCs) for 259 pairs of measurements were quantified. Using independent t tests, the mean differences between self-reports and proxy-reports were tested. Moderate agreement was consistent through all age groups for five subscales, including physical, psychosocial, pain, nausea, and procedural anxiety (ICCs ranged from 0.53 to 0.74). The weakest agreement appeared in two groups, subjects aged 5-7 years and 13-18 years on six domains (school, treatment anxiety, worry, cognitive problems, perceived physical appearance, and communication) (-0.01 to 0.49). Child self-rating was consistently higher than that of proxies for the physical, emotional, and nausea domains among children aged 5-7 years and for procedural anxiety, treatment anxiety, and cognitive problems among children aged 8-12 years.    Conclusion: The agreement level of self-reports and proxy-reports was differently distributed by child age and the PedsQL domains. The proxy children agreement on QoL among children with hematologic malignancy was divergent according to the different age groups, which could potentially be explained by proxy-child bonding at different stages of childhood development. Our recommendation for future studies is to explore children's age as a potential factor influencing proxy agreement on QoL among children with cancer. What is Known: • Children and their proxies may think differently about quality of life (QoL). • Comparing two sources of data (i.e., child and proxy) on aspects of QoL can help identify the discrepancies between children's perceptions of their QoL and their parents' perceptions. This can be useful in terms of identifying potential areas for improvement or concern and may also be helpful in making decisions about treatment and care. What is New: • Our study results demonstrated that proxies who comprised children aged 5-7 years or 13-18 years reported differently among domains that cannot be expressed verbally or with body language, including cognitive problems, perceived physical appearance, and communication. • Children generally perceived their QoL to be better than their proxies. Therefore, a more comprehensive understanding of children's QoL may require the consideration of multiple sources of data from various perspectives.


Subject(s)
Hematologic Neoplasms , Proxy , Quality of Life , Self Report , Humans , Child , Adolescent , Male , Female , Proxy/psychology , Child, Preschool , Hematologic Neoplasms/psychology , Hematologic Neoplasms/therapy , Parents/psychology
7.
Am Soc Clin Oncol Educ Book ; 44(3): e432196, 2024 Jun.
Article in English | MEDLINE | ID: mdl-38768404

ABSTRACT

Patients with hematologic malignancies (HMs) struggle with immense physical and psychological symptom burden, which negatively affect their quality of life (QOL) throughout the continuum of illness. These patients are often faced with substantial prognostic uncertainty as they navigate their illness course, which further complicates their medical decision making, especially at the end of life (EOL). Consequently, patients with HM often endure intensive medical care at the EOL, including frequent hospitalization and intensive care unit admissions, and they often die in the hospital. Our EOL health care delivery models are not well suited to meet the unique needs of patients with HMs. Although studies have established the role of specialty palliative care for improving QOL and EOL outcomes in patients with solid tumors, numerous disease-, clinician-, and system-based barriers prevail, limiting the integration of palliative care for patients with HMs. Nonetheless, multiple studies have emerged over the past decade identifying the role of palliative care integration in patients with various HMs, resulting in improvements in patient-reported QOL, symptom burden, and psychological distress, as well as EOL care. Importantly, these studies have also identified active components of specialty palliative care interventions, including strategies to promote adaptive coping especially in the face of prognostic uncertainty. Future work can leverage the knowledge gained from specialty palliative care integration to develop and test primary palliative care interventions by training clinicians caring for patients with HMs to incorporate these strategies into their clinical practice.


Subject(s)
Caregivers , Hematologic Neoplasms , Palliative Care , Quality of Life , Terminal Care , Humans , Hematologic Neoplasms/therapy , Hematologic Neoplasms/psychology , Caregivers/psychology
8.
Sci Rep ; 14(1): 11153, 2024 05 15.
Article in English | MEDLINE | ID: mdl-38750224

ABSTRACT

The Patient-Reported Outcomes Measurement Information System 29-item Profile version 2.1 (PROMIS-29 V2.1) is a widely utilized self-reported instrument for assessing health outcomes from the patients' perspectives. This study aimed to evaluate the psychometric properties of the PROMIS-29 V2.1 Chinese version among patients with hematological malignancy. Conducted as a cross-sectional, this research was approved by the Medical Ethical Committee of the Institute of Hematology and Blood Diseases Hospital, Chinese Academy of Medical Sciences and Peking Union Medical College (registration number QTJC2022002-EC-1). We employed convenience sampling to enroll eligible patients with hematological malignancy from four tertiary hospitals in Tianjin, Shandong, Jiangsu, and Anhui province in China between June and August 2023. Participants were asked to complete a socio-demographic information questionnaire, the PROMIS-29 V2.1, and the Functional Assessment of Cancer Therapy-General (FACT-G). We assessed the reliability, ceiling and floor effects, structural, convergent discriminant and criterion validity of the PROMIS-29 V2.1. A total of 354 patients with a mean age of 46.93 years was included in the final analysis. The reliability of the PROMIS-29 V2.1 was affirmed, with Cronbach's α for the domains ranging from 0.787 to 0.968. Except sleep disturbance, the other six domains had ceiling effects, which were seen on physical function (26.0%), anxiety (37.0%), depression (40.4%), fatigue (18.4%), social roles (18.9%) and pain interference (43.2%), respectively. Criterion validity was supported by significant correlations between the PROMIS-29 V2.1 and FACT-G scores, as determined by the Spearman correlation test (P < 0.001). Confirmatory factor analysis (CFA) indicated a good model fit, with indices of χ2/df (2.602), IFI (0.960), and RMSEA (0.067). The Average Variance Extracted (AVE) values for the seven dimensions of PROMIS-29 V2.1, ranging from 0.500 to 0.910, demonstrated satisfactory convergent validity. Discriminant validity was confirmed by ideal √AVE values. The Chinese version of the PROMIS-29 V2.1 profile has been validated as an effective instrument for assessing symptoms and functions in patients with hematological malignancy, underscoring its reliability and applicability in this specific patient group.


Subject(s)
Hematologic Neoplasms , Psychometrics , Humans , Hematologic Neoplasms/psychology , Psychometrics/methods , Male , Female , Middle Aged , Adult , China , Cross-Sectional Studies , Reproducibility of Results , Patient Reported Outcome Measures , Quality of Life , Surveys and Questionnaires , Aged , Young Adult , Adolescent
9.
Contemp Clin Trials ; 142: 107577, 2024 Jul.
Article in English | MEDLINE | ID: mdl-38763308

ABSTRACT

BACKGROUND: Allogeneic stem cell transplantation (allo-SCT) is the preferred therapy for patients with high-risk or relapsed hematologic malignancies, but may be complicated by psychological distress (e.g., depression, anxiety) and symptom burden (e.g., fatigue, pain). Mindfulness-based music therapy (MBMT), a relatively novel integrative medicine intervention that draws from mindfulness and music therapy principles, has shown promise in improving psychosocial outcomes and symptom burden in cancer patients. We outline an eHealth-based MBMT (eMBMT) intervention protocol examining: (1) feasibility, acceptability, and intended effects of eMBMT in improving HRQOL, symptom burden, and clinical markers of disease activity (e.g., infections), and (2) the extent to which eMBMT music therapy component-associated improvements in HRQOL, symptom burden, and disease activity are mediated by improvements in psychosocial and physiological (e.g., systemic inflammation, immune recovery) adaptation. METHODS: Participants (n = 60) with a hematologic malignancy undergoing allo-SCT will be randomized to receive eMBMT or an eHealth-based mindfulness meditation (eMM) intervention. eMBMT includes eight 60-min sessions facilitated by a music therapist focusing on mindfulness and music therapy. eMM includes eight 60-min self-led MM practices. RESULTS: Feasibility, acceptability, HRQOL, symptom burden, disease activity, and mediation effects of psychosocial and physiological adaptation will be assessed at baseline, pre-infusion, and post-engraftment with blood collection at baseline and post-engraftment. CONCLUSION: The current pilot RCT is the first eMBMT intervention to address the HRQOL and symptom burden of patients who are undergoing allo-SCT. Results will inform a fully powered RCT to establish preliminary efficacy of eMBMT on improvements in HRQOL, symptom burden, and disease activity.


Subject(s)
Hematologic Neoplasms , Hematopoietic Stem Cell Transplantation , Mindfulness , Music Therapy , Quality of Life , Adult , Female , Humans , Male , Anxiety/therapy , Depression/therapy , Feasibility Studies , Hematologic Neoplasms/therapy , Hematologic Neoplasms/psychology , Hematopoietic Stem Cell Transplantation/methods , Hematopoietic Stem Cell Transplantation/psychology , Meditation/methods , Mindfulness/methods , Music Therapy/methods , Pilot Projects , Telemedicine , Transplantation, Homologous , Randomized Controlled Trials as Topic
10.
Support Care Cancer ; 32(5): 302, 2024 Apr 22.
Article in English | MEDLINE | ID: mdl-38647710

ABSTRACT

PURPOSE: This cross-sectional study explored the associations between intrapersonal and interpersonal emotional competence (EC) and the unmet supportive care needs (SCN), anxiety, and depression of informal caregivers at the beginning of gastrointestinal or haematological cancer care, i.e. during chemotherapy and within 6 months after diagnosis. METHODS: The participants completed a self-reported questionnaire, comprising the Short Profile of Emotional Competence (S-PEC), the SCN survey for partners and caregivers (SCNS-P&C), and the Hospital Anxiety and Depression Scale (HADS). Multivariate logistic regression models were performed to explore the influence of EC on unmet SCN and the presence of moderate/severe anxiety or depression. RESULTS: Most of the 203 caregivers were women (n = 141, 69.80%) and the partners of patients (n = 148, 73.27%) suffering from gastrointestinal (n = 112, 55.17%) and haematological (n = 91, 44.83%) cancer. Only intrapersonal EC showed a significant influence out of all the dimensions of unmet SCN related to healthcare services and information (odds ratio (OR) = 0.35 [95%CI 0.19; 0.65]), emotional and psychological needs (OR = 0.43 [95%CI 0.25; 0.74]), work and social security (OR = 0.57 [95%CI 0.37; 0.88]), and communication and family support (OR = 0.61 [95%CI 0.39; 0.95]). A one-unit increase in the intrapersonal EC score significantly reduced the probability of anxiety (OR = 0.42, [95%CI 0.26; 0.68]) and depression (OR = 0.34, [95%CI 0.21; 0.55]). CONCLUSION: Intrapersonal EC of caregivers is crucial to reduce the risk of unmet SCN, anxiety, and depression from the beginning of care. Identifying caregivers with lower intrapersonal EC may be necessary to increase vigilance from healthcare professionals and psychologists.


Subject(s)
Anxiety , Caregivers , Depression , Emotions , Social Support , Humans , Caregivers/psychology , Female , Male , Middle Aged , Cross-Sectional Studies , Anxiety/etiology , Depression/etiology , Depression/epidemiology , Aged , Surveys and Questionnaires , Adult , Logistic Models , Gastrointestinal Neoplasms/psychology , Hematologic Neoplasms/therapy , Hematologic Neoplasms/psychology , Neoplasms/psychology , Health Services Needs and Demand , Multivariate Analysis
11.
Curr Opin Support Palliat Care ; 18(2): 86-91, 2024 06 01.
Article in English | MEDLINE | ID: mdl-38652458

ABSTRACT

PURPOSE OF REVIEW: Adolescents with haematological malignancies within adult services, in the UK from 16 years old, have unique needs and require developmentally targeted services and approaches to care delivery. High-risk intensive treatments are common for this cohort and a better understanding of what individualised supportive and palliative care means in this context is required. RECENT FINDINGS: Being known and understood as an emerging adult, with particular recognition of developmental stage, is an essential component of quality measures and underpins the adolescent, and caregiver, experience when faced with an uncertain or poor cancer prognosis (UPCP). Healthcare professionals (HCPs) can experience increased emotional labour and feelings of professional inadequacy when caring for adolescents with UPCP. Therapeutic alliance improves HCPs understanding of optimum individualised care by improving communication and supported decision making. Access to training and support for HCPs is required to address the emotional impact of therapeutic alliance with teenage/adolescent and young adults (T/AYAs) with advanced cancer. SUMMARY: Investment in therapeutic alliance, alongside robust support mechanisms and targeted training, can improve the skills, confidence and wellbeing for HCPs, and can also ensure optimum individualised care for T/AYAs with UPCP. Evidence for optimum care for adolescents with advanced cancer is relatively scarce, especially for younger T/AYAs (16-24) in the UK who sit within adult services. Further evaluation of the impact of current UK expertise, services and programs are needed to inform future development.


Subject(s)
Hematologic Neoplasms , Palliative Care , Terminal Care , Humans , Palliative Care/organization & administration , Adolescent , Young Adult , Hematologic Neoplasms/therapy , Hematologic Neoplasms/psychology , Terminal Care/organization & administration , Terminal Care/psychology , United Kingdom , Communication , Decision Making , Health Personnel/psychology , Health Personnel/organization & administration , Professional-Patient Relations , Prognosis
12.
Contemp Clin Trials ; 142: 107550, 2024 Jul.
Article in English | MEDLINE | ID: mdl-38685401

ABSTRACT

BACKGROUND: Although patients undergoing hematopoietic stem cell transplantation (HSCT) must cope with psychological distress and isolation during an extended transplant hospitalization, psychosocial interventions to address these unmet needs are lacking. Virtual reality offers an innovative modality to deliver a patient-centered psychosocial intervention to address psychosocial needs of patients undergoing HSCT. However, there are currently no supportive care interventions leveraging virtual reality in patients undergoing HSCT. OBJECTIVE: To describe the methods of a randomized clinical trial (RCT) to assess the feasibility and preliminary efficacy of a self-administered, virtual reality-delivered psychosocial intervention (BMT-VR) to improve psychological distress and quality of life (QOL) for patients hospitalized for HSCT. METHODS: This study entails a single-center RCT of BMT-VR compared to usual transplant care in 80 patients hospitalized for HSCT. Adult patients with hematologic malignancies hospitalized for autologous or allogeneic HSCT are eligible. BMT-VR includes psychoeducation about the HSCT process, psychosocial skill building to promote effective coping and acceptance, and self-care and positive psychology skills to promote post-HSCT recovery. The primary aim is to assess the feasibility defined a priori as ≥60% of eligible patients enrolling in the study, and of those enrolled and randomized to the BMT-VR, ≥ 60% completing 4/6 BMT-VR modules. Secondary objectives include assessing the preliminary effects on psychological distress and QOL. DISCUSSION: This is the first RCT of a virtual reality-delivered psychosocial intervention for the HSCT population. If deemed feasible, a future larger multi-site clinical trial can evaluate the efficacy of BMT-VR on outcomes for patients hospitalized for HSCT.


Subject(s)
Hematopoietic Stem Cell Transplantation , Quality of Life , Adult , Female , Humans , Male , Adaptation, Psychological , Feasibility Studies , Hematologic Neoplasms/therapy , Hematologic Neoplasms/psychology , Hematopoietic Stem Cell Transplantation/psychology , Hematopoietic Stem Cell Transplantation/methods , Hospitalization , Patient Education as Topic/methods , Pilot Projects , Psychological Distress , Psychosocial Intervention/methods , Self Care/methods , Stress, Psychological/therapy , Virtual Reality
13.
Eur J Oncol Nurs ; 70: 102544, 2024 Jun.
Article in English | MEDLINE | ID: mdl-38513454

ABSTRACT

PURPOSE: This study examines how blood cancer impacts patients' sexuality and sense of gendered identity. METHODS: An interpretive epistemological framework necessitated a qualitative study design. Participants (6 male and 6 female), recruited from a hospital Haematology department in a large Northern English City, took part in semi-structured in-depth interviews to gather rich data about their subjective experiences. RESULTS: A key theme from the qualitative data was a sense of disruption in relation to several aspects of their gendered identities and sexual life. Participants explained disruption to their sexual function and sexual sense of self. They narrated concerns about future imagined relationships. The emotional burden of sexuality related concerns was strongly articulated. A gendered perspective enabled the similarities and differences between men and women to be explored. CONCLUSION: This study, drawing on rich qualitative data, documents the sexuality concerns of blood cancer patients; for some such concerns arise many years post treatment. The findings highlight the need for gender appropriate care around sexuality which should continue to be accessible well after diagnosis and treatment phases have ceased.


Subject(s)
Gender Identity , Qualitative Research , Sexuality , Humans , Male , Female , Middle Aged , Aged , Adult , Sexuality/psychology , Hematologic Neoplasms/psychology , Hematologic Neoplasms/therapy , England , Sexual Behavior/psychology
14.
Eur J Oncol Nurs ; 70: 102571, 2024 Jun.
Article in English | MEDLINE | ID: mdl-38547745

ABSTRACT

PURPOSE: This study aims to identify the factors influencing psychosocial adjustment and its subdomains. METHODS: A descriptive cross-sectional study was conducted with 176 young adults (men 55.7%, 30.5 ± 5.9 years) diagnosed with a hematologic malignancy in South Korea. Psychological adjustment, symptom experience, and type D personality were assessed using self-report questionnaires. Clinical characteristics were extracted from the medical record. Stepwise multiple regression was conducted to identify the factors influencing psychosocial adjustment. RESULTS: The predictors of difficulties in psychosocial adjustment were high symptom experience, type D personality, being unemployed, low functional status, and short time since the last chemotherapy. By subdomain of psychosocial adjustment, predictors of low healthcare orientation were high symptom experience, woman, and type D personality, and predictors of low vocational environment were high symptom experience, being unemployed, short duration of disease, low functional status, and diagnosis. The factors influencing low domestic environment were high symptom experience, being unemployed, and low functional status, and the factor influencing low sexual relationships was high symptom experience. The predictor of low extended family relationships was high symptom experience; predictors of low social environment were high symptom experience and short duration of disease; and predictors of low psychological distress were high symptom experience, type D personality, and being unemployed. CONCLUSION: As young adults with higher symptom experiences, type D personality, low functional status, and shorter time since the last chemotherapy, and who are unemployed experience difficulties in psychosocial adjustment, healthcare professionals should evaluate their psychosocial adjustment and develop strategies to improve the same.


Subject(s)
Adaptation, Psychological , Hematologic Neoplasms , Humans , Female , Cross-Sectional Studies , Male , Adult , Hematologic Neoplasms/psychology , Hematologic Neoplasms/therapy , Republic of Korea , Young Adult , Surveys and Questionnaires , Emotional Adjustment , Type D Personality
15.
Sci Rep ; 11(1): 22507, 2021 11 18.
Article in English | MEDLINE | ID: mdl-34795377

ABSTRACT

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.


Subject(s)
Cryotherapy/methods , Hematologic Neoplasms/therapy , Hematopoietic Stem Cell Transplantation/adverse effects , Ice Cream , Melphalan/administration & dosage , Stomatitis/etiology , Stomatitis/therapy , Transplantation Conditioning/methods , Transplantation, Autologous/adverse effects , Adult , Aged , Female , Hematologic Neoplasms/psychology , Humans , Incidence , Linear Models , Male , Middle Aged , Quality of Life , Retrospective Studies
16.
Psicooncología (Pozuelo de Alarcón) ; 18(2): 317-322, 02 nov. 2021. tab
Article in Spanish | IBECS | ID: ibc-225810

ABSTRACT

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)


Subject(s)
Humans , Male , Female , Adolescent , Young Adult , Adult , Hematologic Neoplasms/psychology , Social Support , Active Life Expectancy , 33955 , Cross-Sectional Studies , Surveys and Questionnaires
18.
Asian Pac J Cancer Prev ; 22(8): 2453-2460, 2021 Aug 01.
Article in English | MEDLINE | ID: mdl-34452558

ABSTRACT

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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Subject(s)
Fatigue/prevention & control , Hematologic Neoplasms/therapy , Hematopoietic Stem Cell Transplantation/methods , Imagery, Psychotherapy/methods , Neutropenia/prevention & control , Quality of Life , Relaxation Therapy/methods , Adolescent , Adult , Aged , Case-Control Studies , Fatigue/psychology , Female , Follow-Up Studies , Hematologic Neoplasms/pathology , Hematologic Neoplasms/psychology , Humans , Male , Middle Aged , Neutropenia/psychology , Non-Randomized Controlled Trials as Topic , Prognosis , Surveys and Questionnaires , Survival Rate , Transplantation, Homologous , Young Adult
19.
BMC Cancer ; 21(1): 555, 2021 May 17.
Article in English | MEDLINE | ID: mdl-34001021

ABSTRACT

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.


Subject(s)
Communication , Hematologic Neoplasms/diagnosis , Patient Preference/statistics & numerical data , Physician-Patient Relations , Truth Disclosure , Adaptation, Psychological , Adolescent , Adult , Empathy , Female , Hematologic Neoplasms/psychology , Humans , Italy , Male , Middle Aged , Patient Preference/psychology , Qualitative Research , Self Report/statistics & numerical data , Young Adult
20.
J Cancer Res Clin Oncol ; 147(7): 1917-1925, 2021 Jul.
Article in English | MEDLINE | ID: mdl-33825025

ABSTRACT

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.


Subject(s)
Ambulatory Care Facilities/statistics & numerical data , Cancer Care Facilities/statistics & numerical data , Dietary Supplements , Drug Interactions , Feeding Behavior , Hematologic Neoplasms/diet therapy , Aged , Attitude , Cross-Sectional Studies , Female , Follow-Up Studies , Hematologic Neoplasms/psychology , Humans , Male , Motivation , Prevalence , Prognosis , Surveys and Questionnaires
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