Measurement of the major ignored burden of multiple myeloma, pernicious anaemia and of other haematological conditions on partners and family members: A cross-sectional study.

BACKGROUND: Having a haematological condition can adversely affect the quality of life (QoL) of family members/partners of patients. It is important to measure this often ignored burden in order to implement appropriate supportive interventions. OBJECTIVE: To measure current impact of haematological conditions on the QoL of family members/partners of patients, using the Family Reported Outcome Measure-16 (FROM-16). METHODS: A cross-sectional study, recruited online through patient support groups, involved UK family members/partners of people with haematological conditions completing the FROM-16. RESULTS: 183 family members/partners (mean age = 60.5 years, SD = 13.2; females = 62.8%) of patients (mean age = 64.1, SD = 12.8; females = 46.4%) with 12 haematological conditions completed the FROM-16. The FROM-16 mean total score was 14.0 (SD = 7.2), meaning 'a moderate effect on QoL'. The mean FROM-16 scores of family members of people with multiple myeloma (mean = 15.8, SD = 6.3, n = 99) and other haematological malignancies (mean = 13.9, SD = 7.8, n = 29) were higher than of people with pernicious anaemia (mean = 10.7, SD = 7.5, n = 47) and other non-malignant conditions (mean = 11, SD = 7.4, n = 56, p < .01). Over one third (36.1%, n = 183) of family members experienced a 'very large effect' (FROM-16 score>16) on their quality of life. CONCLUSIONS: Haematological conditions, in particular those of malignant type, impact the QoL of family members/partners of patients. Healthcare professionals can now, using FROM-16, identify those most affected and should consider how to provide appropriate holistic support within routine practice.

Spiritual Needs and Perception of Quality of Care and Satisfaction With Care in Hematology/Medical Oncology Patients: A Multicultural Assessment.

CONTEXT: Assessment and response to patients' spiritual concerns are crucial components of high-quality supportive care. Better measures of spiritual needs across the cultural spectrum may help direct necessary interventions. OBJECTIVES: The objective of this study was to assess spiritual needs in a racially/ethnically and religiously mixed sample of hematology and oncology outpatients and examine the association between spiritual needs and perception of quality of care and satisfaction with care. METHODS: This is an observational study of 727 racially/ethnically and religiously diverse outpatients. Spiritual needs were measured using a validated, 23-item questionnaire, the Spiritual Needs Assessment for Patients. Scales were administered in four languages. RESULTS: Forty-four percent were white, 13% Hispanic, 25% black, and 14% Asian. English was the primary language for 57%; 59% considered themselves "spiritual but not religious." At least one spiritual need was reported by 79%. Forty-eight percent were comfortable having their physician inquire about spiritual needs. Compared with English-speaking patients, Russian-speaking patients reported lower spiritual needs (P = 0.003). Patients who considered themselves "spiritual but not religious" (P = 0.006) reported a higher level of spiritual needs. Higher spiritual needs were associated with less satisfaction with care (P = 0.018) and lower perception of quality of care (P = 0.002). CONCLUSION: Spiritual needs are common in an ethnically, religiously, and linguistically diverse cancer patient population but may differ by cultural background. High levels of spiritual need are associated with lower levels of satisfaction and diminished perception of quality of care. Training clinicians to address patients' spiritual concerns, with attention to cultural differences, may improve patients' experiences of care.

Emotional distress and burden among caregivers of children with oncological/hematological disorders.

INTRODUCTION: Caring for children with oncological and hematological disorders may lead to caregiver emotional distress and caregiver burden; however, little work has examined the relationship between children's symptoms and caregiver's distress and burden. METHOD: This study used self-report survey data from caregivers (N = 96) and a cross-sectional design to examine correlates of caregiver emotional distress and burden. Data collected included caregiver and child demographic data, child symptoms (i.e., sleep problems, pain, and emotional/behavioral problems), caregiver emotional distress, and caregiver burden. RESULTS: Multiple linear regression found that parent reported financial difficulty (ß = 0.29, t = 3.13, p = .003), greater child sleep problems (ß = 0.29 t = 2.81, p = .007), greater child pain (ß = 0.33 t = 3.48, p = .001), and greater child emotional/behavioral problems (ß = 0.27, t = 2.71, p = .009) were all related to higher levels of caregiver emotional distress. Only financial difficulties (ß = -0.35, t = -2.03, p = .04) and child pain (ß = -0.30, t = -2.33, p = .02) were related to caregiver burden. DISCUSSION: Child symptoms may play an important role in the development of caregiver distress and caregiver burden; future research should utilize longitudinal designs to examine temporal and casual relationships. (PsycINFO Database Record

Speech pathology services to children with cancer and nonmalignant hematological disorders.

Children with cancer and nonmalignant hematological disorders may require speech pathology (SP) support; however, limited evidence is available describing prevalence and severity of swallowing/feeding and communication impairments in this population. A retrospective chart review of 70 children referred to SP at the newly formed Queensland Children's Cancer Centre was conducted to describe the prevalence and severity of swallowing/feeding and communication dysfunction, and the association between impairment, oncology and hematology diagnosis, and service utilization (time and occasions of service). Swallowing/feeding disorders were the most commonly observed impairments at initial assessment (58.6%). Children with central nervous system tumors (P = .03) and nonmalignant hematological disorder (P = .03) had significantly higher rates of feeding impairment than other oncology and hematology diagnostic groups. Children with central nervous system tumors had the highest rates of oral phase (P = .01) and pharyngeal phase (P = .01) dysphagia (swallowing disorder). No significant difference was found between diagnostic groups for intensity of SP service delivery. Prospective research is required to examine prevalence and severity of disorders, and service utilization in a more established clinic, and to investigate interactions between cancer treatment and swallowing/feeding and communication dysfunction.

Developmental profile and trajectory of neuropsychological skills in a child with Kabuki syndrome: implications for assessment of syndromes associated with intellectual disability.

Kabuki syndrome (KS) is a rare genetic syndrome involving dysmorphic facial features,and reports of intellectual disability (ID). We examined the developmental trajectory of neuropsychological skills in a child with KS (seen at ages 4, 6, 7, 9, and 11). Examination of raw and age-corrected standard scores suggests that language-based skills developed appropriately, but visually based skills slowed and reached a plateau. Executive dysfunction and mood symptoms were also observed. While ID is described as a core feature of KS,some patients may not meet diagnostic criteria for ID, and may be better described as having specific deficits in nonverbal skills. Longitudinal neuropsychological assessment of children with KS and other syndromes associated with ID is warranted to understand the true prevalence of ID versus isolated cognitive impairments.

Health-related quality of life assessment in hematologic disease.

Evaluating health-related quality of life (HRQL) for children who have benign hematologic disorders can: (1) aid in the evaluation of different therapies and emerging new technologies; (2) serve as an invaluable source of anticipatory guidance, for current and future patients; and (3) serve an important evaluative function of clinical services or programs to identify potential areas in which additional services, supports, or interventions are needed. The past 20 years have been marked by the dramatic growth in the field of HRQL research, although much of the progress in conceptualization, instrument development, and refinement has occurred in adults. Pediatric health services researchers and their clinical colleagues have had to grapple with the methodologic challenges in evaluating HRQL in children. This article includes a discussion of instrumentation, respondent selection, and study design consideration in the evaluation of HRQL in children who have benign hematologic disorders.

Proactive palliative care choices for haematology day unit patients.

End stage haematology patients may require transfusion of blood, or blood products, regularly throughout the week. One regional haematology day unit sister identified difficulties that these hospital services dependent patients were experiencing in establishing contact with local community specialist palliative care services. As a consequence, some patients were unable to access specialist palliative care services in the community when they were too unwell to attend the day unit, resulting in acute admission to hospital for terminal care. Discussion of this issue with nursing colleagues from the hospital and community palliative care teams led to the development of an alternative model of palliative care delivery for these patients. The new model increased patient choice. Evaluation of this model of care demonstrated an increase in planned hospice/community deaths, avoiding unnecessary emergency hospital admissions in the last days of life. All regional patients accessed some palliative care services/treatment locally and there was opportunity for patient-initiated palliative care review.

[Information and worry among patients with non-oncohematological pathologies upon arrival at the hematology clinic]. / Información y preocupación de los pacientes con patología no oncohematológica al llegar a la consulta de hematología.

PURPOSE: Patients are frequently referred to the haematologist to be studied due to the presence of processes that are not properly haematological. We have studied the group of outpatients with non-oncohaematological pathologies referred to our external haematology clinic to evaluate their knowledge about the reason for consultation, the existence or not of worry upation and its degree at the arrival. PATIENTS AND METHODS: We have made a prospective study including all patients with non-oncohaematological processes (n = 204) who were referred for the first time to our external consultation between April and October 1997. We evaluated in each patient, using an inquest, the following data: age, sex, origin (hospital consultations or urban or rural health centres), reason for consultation, knowledge of the reason for consultation (yes/partially/no), existence or not of worry (yes/no) and when present, its degree (low, moderate, high). The inquiry was made to the parents in those patients aged under 12 years. We have analyzed all adults, each group of adult patients (rural, urban, hospital) separately and compared one group to each other, all pediatric patients and we have compared as well the overall results obtained with adult patients with those from the parents of pediatric patients. RESULTS: 1) Adult patients (n = 169; 78 referred from hospital, 59 from urban and 32 from rural health centres): with respect to the knowledge of the reason for consultation 49.7% of them knew it perfectly, 20.1% partially, and 30.2% did not know about it. 48.5% of patients arrived worried to the clinic, 16.6% of them with a high degree, 17.8% moderate and 14.2% low. 2) Adults referred from primary health care (urban versus rural health centres): We have found neither significant differences in the knowledge of the reason for consultation, worry or its degree with respect to age, sex or origin (urban or rural), nor in the worry or its degree with respect to the patient knowledge of the reason for consultation. 3) Adults referred from other hospital units: The mean age of patients who knew the reason for consultation was significatively lower than that observed in the group who did not (respectively 43.3 and 57 years) (p = 0.003). These differences did not exist with respect to sex. Differences in the existence or not of worry with respect to sex were almost significant, women arrive more worried than men (57.1% and 31.8% respectively, p = 0.07). No significant differences were found in the existence or not of worry and its degree with respect to age or knowledge of the reason for consultation. 4) Comparison between both groups of adults patients (hospital consultation and health centres): No significant differences in the knowledge of the reason for consultation, existence or not of worry and its degree have been found with respect to the other parameters studied. 5) Paediatric patients (n = 35; 8 referred from hospital, 14 from urban and 13 rural health centres): With respect to the knowledge of the reason for consultation 62.9% of them knew it perfectly, 17.1% partially and 20% did not know about it. 80% of patients' parents arrived worried at consultation, 45.7% with a high degree, 20% moderate and 14.3% low. 6) Comparison between paediatrics and adult patients: we have only found significative differences in the existence or not of worry (80% and 48.5% respectively, p = 0.001) and its degree (65.7% of parents with moderate or high worry and 34.4% of adults, p = 0.0004). Parents of paediatric patients arrive at our consultation more worried and with a higher worry degree than the other adults. CONCLUSION: We consider that patients referred to our external consultation of haematology for the first time arrive with a poor knowledge of their reason for consultation. This observation does not seem to have any relation with age, sex or origin (hospital consultations, urban or rural health centres). (ABSTRACT TRUNCATED)