The aim of this study was to evaluate caregiver burden and quality of life (QoL) in active treatment settings and hospice care for 76 family caregivers of advanced cancer patients, using the Medical ...Outcomes Study Short Form and the Caregiver Burden Inventory. Compared to the active group, the hospice group reported significantly lower QoL scores in mental component summary score and higher scores in general health subscale and in physical component summary score. Future research needs to further investigate the complexities of caregivers' needs, especially in the emotional and mental domains, and offer effective, clinically proven interventions.
Highlights ► Huntington’s disease patients showed abnormalities in the temporal processing of the nociceptive stimuli at spinal level. ► In Huntington’s disease patients the supraspinal control of ...pain expressed by diffuse noxious inhibitory control seems to work normally. ► Our data support the hypothesis that the striatum is involved in pain matrix and that its atrophy could interfere with pain processing.
Although research has shown that many cancer patients report positive life changes following cancer diagnosis, there are few data in the literature related to PTG in caregivers of cancer patients. ...However, the few studies available have shown that this kind of positive changes can also be experienced by family members. The aims of this study were to explore PTG in caregivers of cancer patients and to investigate correlations between the Posttraumatic growth, psychological status and QoL of caregivers and those of patients, taking into account also clinical and socio-demographic aspects.
We enrolled 60 patient/caregiver pairs in the Department of Medical Oncology of the National Research Center "Giovanni Paolo II" in Bari. Both patients and caregivers were assessed using the following scales: Posttraumatic growth Inventory (PTGI); Hospital anxiety and depression scale; Short Form (36) Health Survey (SF-36); ECOG Performance Status. Clinical and socio-demographic data were collected.
Caregivers showed significantly higher scores than patients in the dimension of "personal strength." Furthermore, we found a significantly close association between anxiety and depression of caregivers with those of patients. Younger caregivers were better than older ones in terms of physical activity, vitality, mental health, and social activities. Although the degree of relationship with the patient has no significant effect on the dependent variables of the study, it was found that caregivers with a degree of kinship more distant to the patient have less physical pain than the closest relatives.
RESULTS of the present study show that caregivers of cancer patients may experience post-traumatic growth as the result of their caregiver role. It would be interesting to investigate in future research which factor may mediate the presence of post-traumatic growth.
There is controversy about the clinical consequences of intermediate alleles (IAs) in Huntington disease (HD). The main objective of this study was to establish the clinical manifestations of IA ...carriers for a prospective, international, European HD registry.
We assessed a cohort of participants at risk with <36 CAG repeats of the huntingtin (HTT) gene. Outcome measures were the Unified Huntington's Disease Rating Scale (UHDRS) motor, cognitive, and behavior domains, Total Functional Capacity (TFC), and quality of life (Short Form-36 SF-36). This cohort was subdivided into IA carriers (27-35 CAG) and controls (<27 CAG) and younger vs older participants. IA carriers and controls were compared for sociodemographic, environmental, and outcome measures. We used regression analysis to estimate the association of age and CAG repeats on the UHDRS scores.
Of 12,190 participants, 657 (5.38%) with <36 CAG repeats were identified: 76 IA carriers (11.56%) and 581 controls (88.44%). After correcting for multiple comparisons, at baseline, we found no significant differences between IA carriers and controls for total UHDRS motor, SF-36, behavioral, cognitive, or TFC scores. However, older participants with IAs had higher chorea scores compared to controls (p = 0.001). Linear regression analysis showed that aging was the most contributing factor to increased UHDRS motor scores (p = 0.002). On the other hand, 1-year follow-up data analysis showed IA carriers had greater cognitive decline compared to controls (p = 0.002).
Although aging worsened the UHDRS scores independently of the genetic status, IAs might confer a late-onset abnormal motor and cognitive phenotype. These results might have important implications for genetic counseling.
NCT01590589.
Introduction
The well‐being and quality of life (QoL) of long‐term cancer survivors may be affected, both positively and negatively, by psychosocial factors related to the experience of being a ...cancer patient. We investigated whether, in long‐term cancer survivors, the psychosocial impacts of cancer associate with socio‐demographic–clinical variables; whether, within the positive and negative dimensions taken separately, some impacts are more intense than others; and whether these impacts explain QoL.
Methods
Italian long‐term cancer survivors (n = 500) completed the Impact of Cancer (IOC‐V2) and Short Form 36 Health Survey (SF‐36) questionnaires.
Results
The IOC‐V2 negative impact score associated with gender, education, occupational status and health issues, whereas no association was found between the positive impact score and socio‐demographic–clinical variables. Of the positive impacts, Altruism/Empathy was the highest (p < 0.001); Positive self‐evaluation was higher than Health awareness (p = 0.001); and Meaning of cancer was the lowest (p < 0.001). Among the negative impacts, Worry was the highest (p < 0.001), whereas Body changes concerns was higher than both Appearance concerns (p < 0.001) and Life Interferences (p < 0.001). The assessed impacts explained more than 25% of the variance of both physical and mental functioning scores.
Conclusions
The provided data document psychosocial factors affecting QoL in Italian long‐term cancer survivors.
Huntington's disease (HD) is an inherited neurodegenerative disorder characterised by motor impairment, cognitive decline and psychiatric disorders. Dysphagia is a pathologic condition that increases ...morbidity and mortality of the affected people. Our aim was to evaluate dysphagia in a group of HD patients in view of motor, cognitive and functional decline. Thirty-seven genetically confirmed HD patients were submitted to clinical evaluations of swallowing. Bedside Swallowing Assessment Scale (BSAS) was used. Dysphagia Outcome and Severity Scale (DOSS) was applied for a preliminary classification of swallowing difficulties. All patients were also evaluated by the Unified Huntington's Disease Rating Scale (UHDRS). A group of 39 controls comparable for sex and age were recruited for BSAS scores normalisation. The BSAS scores indicated that in our HD cohort, 32.4% presented relevant or severe dysphagia. The DOSS levels were significantly correlated with main clinical features, such as age, disease duration and motor impairment, with special regard to lingual protrusion ability, dysarthria and bradykinesia. The total functional capacity (TFC) and cognitive scales did not show significant correlation with DOSS levels. The results of clinical examination of swallowing indicated that dysphagia is a prevalent motor symptom of HD.
It has been shown that a reciprocal relationship between cancer patients and their family caregivers positively decreases distress in both. In this context we tried to explore the role of ...relationship reciprocity in the dyad members’ symptoms of fatigue and distress (anxiety and depression). Specifically, we aimed to assess the implications of relationship reciprocity testing the link between the various measurements of patient Quality of Life (QoL) and caregiver burden and the other measures of fatigue, distress, and relationship reciprocity. Moreover we aimed to examine the inter-relatedness of patients’ and caregivers’ relationship reciprocity with their own as well as fatigue and distress of the dyads. A convenience sample of 545 adult cancer patients and their caregivers from 15 cancer centers were examined using a cross-sectional design. Participants were administered dyadic measures (fatigue, distress, relationship reciprocity) and individual measures (patients’ QoL and caregivers’ burden). Patients’ QoL and caregivers’ Burden were associated with fatigue, distress and relationship reciprocity. The Actor-Partner Interdependence Model (APIM) revealed that each person’s relationship reciprocity was associated with their own distress and fatigue (actor effects); only caregivers’ relationship reciprocity was associated with patients’ fatigue and distress (partner effects). These findings suggest that the implication of the caregiving relationship for fatigue symptoms in both - patients and caregivers - appears worth of investigation.
The progressive improvement of lymphoma therapies has led to a significant prolongation of patient survival and life expectancy. However, lymphoma survivors are at high risk of experiencing a range ...of early and late adverse effects associated with the extent of treatment exposure. Among these, second malignancies and cardiopulmonary diseases can be fatal, and neurocognitive dysfunction, endocrinopathy, muscle atrophy, and persistent fatigue can affect patients' quality of life for decades after treatment. Early recognition and reduction of risk factors and proper monitoring and treatment of these complications require well-defined follow-up criteria, close coordination among specialists of different disciplines, and a tailored model of survivorship care. We have summarized the major aspects of therapy-related effects in lymphoma patients, reviewed the current recommendations for follow-up protocols, and described a new hospital-based model of survivorship care provision from a recent multicenter Italian experience.
This study aimed to verify whether and how anxiety and depression symptoms are associated both to socio-demographic and clinical variables (age, civil status, type of cancer diagnosed, time elapsed ...between cancer diagnosis and Oncologic Genetic Counseling/OGC, number of relatives affected by cancer) and to psychological features (presence/absence of previous psychological suffering), subjective cancer risk perception, psychological attitude approaching/OGC) in a sample of Caucasian patients accessing OGC.
201 participants (193 female and 8 male) accessing OGC in the Istituto di Ricovero e Cura Carattere Scientifico (IRCCS) Giovanni Paolo II in Bari completed the Hospital Depression and Anxiety Scale (HADs) that was analyzed as global scoring, anxiety (HAD-A) and depression subscale (HAD-D).
In our sample, higher HADs, HAD-A and HAD-D scorings were associated in different ways to both socio-demographic information (age: p value 0.019), clinical and medical features (personal history of cancer: HAD-D p value 0.02; months elapsed between diagnosis and OGC, HAD-A p value 0.004 and HADs p value 0.008) and psychological dimensions (approaching genetic counseling: anxiety p value 0.06; fear p value 0.02; duty p value 0.04).
This study showed that during the process of oncological genetic counseling the importance of taking into consideration not only medical variables but also cognitive and emotional aspects from both the individual and family spheres, in order to assure adequate care of the patient.
Purpose
Since long-term survivorship is now a reality for an increasingly number of people with a history of cancer, understanding their quality of life (QoL) can inform health care policy as well as ...help supporting individual patients. This study was aimed to quantify QoL of this specific population in comparison with data provided for both the general population and cancer patients and to assess QoL association with several sociodemographic, clinical, and psychological variables.
Methods
Three hundred fourteen Italian long-term cancer survivors (people who have been free from cancer and cancer treatments for at least 5 years) completed a battery of questionnaires including the SF12 for QoL assessment.
Results
Both physical and mental functioning were higher than those among Italian cancer patients but lower than those of the Italian general population (
p
< .001). Poorer QoL (physical and mental functioning) was associated more often with psychological conditions (as anxiety and depression) than with sociodemographic and cancer-related variables.
Conclusions
These data support an ongoing specific interest in the QoL of long-term cancer survivors and suggest the need for further study of multidimensional functioning in this population.
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