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1.
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
2.
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
3.
Curr Opin Support Palliat Care ; 18(2): 86-91, 2024 Jun 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
4.
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
5.
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
6.
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
8.
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. 
.


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
9.
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
10.
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
11.
Cancer Med ; 10(3): 1066-1073, 2021 02.
Article in English | MEDLINE | ID: mdl-33527779

ABSTRACT

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.


Subject(s)
Cancer Survivors/statistics & numerical data , Health Behavior , Hematologic Neoplasms/psychology , Hematologic Neoplasms/therapy , Life Style , Survivorship , Adult , Aged , Aged, 80 and over , Cancer Survivors/psychology , Cross-Sectional Studies , Diet , Exercise , Female , Follow-Up Studies , Humans , Male , Middle Aged , Prognosis , Survival Rate , Young Adult
13.
Support Care Cancer ; 29(7): 4065-4073, 2021 Jul.
Article in English | MEDLINE | ID: mdl-33404815

ABSTRACT

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.


Subject(s)
COVID-19/epidemiology , Health Services Needs and Demand , Hematologic Neoplasms/psychology , Hematologic Neoplasms/therapy , Monitoring, Physiologic/methods , Palliative Care , Adult , Aged , Anxiety/diagnosis , Anxiety/epidemiology , Anxiety/etiology , Combined Modality Therapy , Exercise Therapy/methods , Exercise Therapy/psychology , Female , Health Services Needs and Demand/statistics & numerical data , Hematologic Neoplasms/epidemiology , Hematopoietic Stem Cell Transplantation/psychology , Humans , Male , Mass Screening/methods , Middle Aged , Palliative Care/psychology , Pandemics , Patient Compliance/statistics & numerical data , Quality of Life/psychology , Surveys and Questionnaires , Telemedicine/methods , Turkey/epidemiology , Young Adult
14.
Support Care Cancer ; 29(6): 3069-3076, 2021 Jun.
Article in English | MEDLINE | ID: mdl-33051829

ABSTRACT

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.


Subject(s)
Caregivers/psychology , Family/psychology , Hematologic Neoplasms/psychology , Adult , Female , Humans , Male , Middle Aged
15.
J Cancer Res Clin Oncol ; 147(4): 1239-1246, 2021 Apr.
Article in English | MEDLINE | ID: mdl-33052515

ABSTRACT

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.


Subject(s)
Health Services Needs and Demand , Hematologic Neoplasms/psychology , Hematopoietic Stem Cell Transplantation/methods , Needs Assessment , Quality of Life , Social Support , Adolescent , Adult , Cohort Studies , Female , Follow-Up Studies , Hematologic Neoplasms/rehabilitation , Hematologic Neoplasms/therapy , Humans , Male , Middle Aged , Patient Education as Topic , Prognosis , Surveys and Questionnaires , Young Adult
16.
Cancer Nurs ; 44(4): E201-E208, 2021.
Article in English | MEDLINE | ID: mdl-32195708

ABSTRACT

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.


Subject(s)
Caregivers/psychology , Family/psychology , Hematologic Neoplasms/psychology , Interpersonal Relations , Life Change Events , Adaptation, Psychological , Adult , Aged , Humans , Male , Middle Aged , Qualitative Research , Quality of Life/psychology
17.
J Pediatr Hematol Oncol ; 43(1): e37-e44, 2021 01.
Article in English | MEDLINE | ID: mdl-32459719

ABSTRACT

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.


Subject(s)
Delivery of Health Care/standards , Health Personnel/psychology , Hematologic Neoplasms/psychology , Parents/psychology , Social Media/statistics & numerical data , Social Support , Stress, Psychological/prevention & control , Child , Child, Preschool , Confidentiality , Female , Health Communication , Hematologic Neoplasms/therapy , Humans , Male , Trust
18.
Blood Rev ; 48: 100783, 2021 07.
Article in English | MEDLINE | ID: mdl-33342584

ABSTRACT

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.


Subject(s)
Cancer Survivors/psychology , Fear/psychology , Hematologic Neoplasms/epidemiology , Hematologic Neoplasms/psychology , Combined Modality Therapy , Disease Management , Disease Progression , Hematologic Neoplasms/therapy , Humans , Public Health Surveillance , Quality of Life , Recurrence , Syndrome , Treatment Outcome
19.
Eur J Oncol Nurs ; 50: 101886, 2021 Feb.
Article in English | MEDLINE | ID: mdl-33321461

ABSTRACT

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.


Subject(s)
Anxiety/psychology , Fear/psychology , Hematologic Neoplasms/psychology , Pain Management/methods , Pain, Procedural/psychology , Pediatrics/methods , Virtual Reality , Adolescent , Anxiety/prevention & control , Child , Controlled Before-After Studies , Female , Hematologic Neoplasms/therapy , Humans , Male , Needles , Pain Measurement/psychology , Pain Perception , Pain, Procedural/prevention & control , Parents/psychology , Self Report , Vascular Access Devices
20.
Eur J Oncol Nurs ; 49: 101845, 2020 Dec.
Article in English | MEDLINE | ID: mdl-33128994

ABSTRACT

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.


Subject(s)
Cancer Survivors/psychology , Fear , Hematologic Neoplasms/psychology , Hematologic Neoplasms/therapy , Hematopoietic Stem Cell Transplantation/psychology , Neoplasm Recurrence, Local/psychology , Quality of Life/psychology , Adult , Aged , Australia , Cross-Sectional Studies , Female , Humans , Male , Middle Aged , Prevalence , Surveys and Questionnaires , Young Adult
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