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Informal caregiving may likely increase as the number of cancer survivors grows. Caregiving responsibilities can impact caregivers’ quality of life (QOL). Understanding the current state of the science regarding caregiving QOL could help inform future research and intervention development.
A systematic literature review in PubMed/Medline examined research on QOL among informal cancer caregivers and related psychosocial health outcomes. Original research articles in English, published between 2007 and 2017 about caregivers (aged >18 years) of adult cancer patients in the United States were included. Abstracted articles were categorized according to caregiving recipient's phase of survivorship (acute, middle to long-term, end of life/bereavement).
Of 920 articles abstracted, 60 met inclusion criteria. Mean caregiver age ranged from 37 to 68 with the majority being female, non-Hispanic white, with at least a high school degree, and middle income. Almost half of the studies focused on caregivers who provided care for survivors from diagnosis through the end of active treatment. Studies examined physical health, spirituality, psychological distress, and social support. Differences in QOL were noted by caregiver age, sex, and employment status.
Significance of Results
Additional research includes the examination of the needs of diverse cancer caregivers and determines how additional caregiver characteristics (e.g., physical functioning, financial burden, etc.) affect QOL. This includes studies examining caregiver QOL in the phases following the cessation of active treatment and assessments of health systems, support services, and insurance to determine barriers and facilitators needed to meet the immediate and long-term needs of cancer caregivers.
This review evaluates whether brachytherapy can be considered as an alternative to whole breast irradiation (WBI) using criteria such as local recurrence rates, overall survival rates and quality of life (QoL) factors. This is an important issue because of a decline in local recurrence rates, suggesting that some women at very low risk of recurrence may be incurring the negative long-term side effects of WBI without benefitting from a reduction in local recurrence and greater overall survival. As such, the purpose of this literature review is to evaluate whether brachytherapy is a credible alternative to external beam radiation with a particular focus on the impact it has on patient QoL.
The search terms used were devised by using the Population Intervention Comparison Outcome framework, and a literature search was carried out using Boolean connectors and Medical Subject Headings in the PubMed database. The resultant articles were manually assessed for relevance and appraised using the Scottish Intercollegiate Guidelines Network tool. Additional papers were sourced from the citations of articles found using the search strategy. Government guidelines and regulations were also used following a manual search on the National Institute for Health and Care Excellence website. This process resulted in a total of 30 sources being included as part of the review.
Three types of brachytherapy were the foundation for the majority of the papers found: interstitial multi-catheter brachytherapy, intra-cavity brachytherapy and permanent seed implantation. The key themes that arose from the literature were that brachytherapy is equivalent to WBI both in terms of 5-year local recurrence rates and overall survival rates at 10–12 years. The findings showed that brachytherapy was superior to WBI for some QoL factors such as being less time-consuming and equal in terms of others such as breast cosmesis. The results did also show that brachytherapy does come with its own local toxicities that could impact upon QoL such as the poor breast cosmesis associated with some brachytherapy techniques.
In conclusion, brachytherapy was deemed a safe or acceptable alternative to WBI, but there is a need for further research on the long-term local recurrence rates, survival rates and quality of life issues as the volume of evidence is still significantly smaller for brachytherapy than for WBI. Specifically, there needs to be further investigation as to which patients will benefit from being offered brachytherapy and the influence that factors such as co-morbidities, performance status and patient choice play in these decisions.
Sleep disturbances negatively impact the quality of life of patients with Parkinson’s disease (PD). While persons living in regional areas are at higher risk of PD, PD is poorly managed in regional communities. This study examined factors associated with sleep problems in PD in a regional context.
A mixed-methods cross-sectional design was used.
Patients with PD were recruited from the Queensland Parkinson’s Project database.
Those who agreed to participate were sent a questionnaire assessing aspects of sleep, depression, anxiety, quality of life, and PD severity. Qualitative information was also gathered. Correlations between variables were examined; thematic analyses were performed for qualitative data.
All participants (n = 49) reported sleep disturbances, with 73% (n = 36) reporting sleep disturbance to be problematic. Global sleep dysfunction positively correlated with daytime napping (r = .34, p = .01), watching the clock when unable to sleep (r = .38, p = <.01), staying in bed when unable to sleep (r = .43, p = <.01), and going to bed hungry (r = .31, p = .03) and negatively correlated with daytime exercise (r = -.32, p = .02). Positive correlations were observed between global sleep dysfunction and depression (r = .55, p = <.01), anxiety (r = .31, p = .04), and dysfunctional sleep beliefs (r = .39, p = <.01).
There is a clear need for identifying factors related to sleep disturbances in PD for effective management.
Oral treatment (targeted or chemotherapy) for cancer is being increasingly used. While fatigue is a known side effect of intravenous chemotherapy, the rate of fatigue and the impact of fatigue on other patient-reported outcomes are not well described.
At Massachusetts General Hospital Cancer Center, 180 adult patients prescribed oral targeted or chemotherapy for various malignancies enrolled in a randomized controlled trial of adherence and symptom management. Patients completed baseline self-reported measures of fatigue (Brief Fatigue Inventory; BFI), anxiety and depressive symptoms (Hospital Anxiety and Depression Scale; HADS), and quality of life, including subscales for physical, social, emotional, and functional well-being ([QOL] Functional Assessment of Cancer Therapy — General; FACT-G). We examined clinically relevant fatigue using a validated cut-off score for moderate-severe fatigue (BFI global fatigue ≥4) and tested the associations with anxiety symptoms, depressive symptoms, and QOL with independent samples t-tests.
At baseline, 45 of 180 participants (25.0%) reported moderate-severe fatigue. Fatigued patients experienced more anxiety symptoms (mean diff. 3.73, P < 0.001), more depressive symptoms (mean diff. 4.14, P < 0.001), and worse QOL on the total FACT-G score (mean diff. −19.58, P < 0.001) and all subscales of the FACT-G compared to patients without moderate-severe fatigue.
Significance of results
One in four patients on oral treatment for cancer experienced clinically relevant fatigue that is associated with greater anxiety and depressive symptoms and worse QOL.
Being a family caregiver, and in particular giving care to someone with dementia, impacts mental and physical health and potentially reduces the ability of caregivers to “live well.” This paper examines whether three key psychological resources—self-efficacy, optimism, and self-esteem—are associated with better outcomes for caregivers of people with dementia.
Design and Participants:
Caregivers of 1,283 people with mild-to-moderate dementia in the Improving the Experience of Dementia and Enhancing Active Life (IDEAL) project responded to measures of self-efficacy, optimism, and self-esteem, and “living well” (quality of life, life satisfaction, and well-being). Multivariate linear regression was used to examine the association between psychological resources and “living well”.
Self-efficacy, optimism, and self-esteem were all independently associated with better capability to “live well” for caregivers. This association persisted when accounting for a number of potential confounding variables (age group, sex, and hours of caregiving per day).
Low self-efficacy, optimism, and self-esteem might present a risk of poor outcomes for caregivers of people with dementia. These findings encourage us to consider how new or established interventions might increase the psychological resilience of caregivers.
This study investigated health-related quality of life outcomes for children with cochlear implants in India using the Glasgow Children's Benefit Inventory questionnaire. Cochlear implantation is associated with improved language outcomes. Some studies show this gives higher quality of life after implantation. Previous research demonstrates that India presents unique circumstances that impact perspectives regarding cochlear implantation.
Children (aged under 18 years) who had undergone cochlear implantation were recruited from Vani Pradan Kendra, an organisation for individuals with hearing loss based in Bangalore, India. Demographic data including age, sex, duration of hearing loss and age at implant were collected, and the children's parents or caregivers completed the Glasgow Children's Benefit Inventory questionnaire.
Sixty-nine children (mean age: 8.0 ± 3.89 years) were recruited, and all reported improved quality of life after cochlear implantation. There was no effect of age, gender or education on reported benefits. However, a younger age at implant and longer experience with an implant were associated with greater quality of life improvements.
Cochlear implantation leads to improved quality of life, with greater improvements associated with earlier implantation. This supports early intervention in children with profound hearing loss.
The global population including Canada’s is aging, which demands planning for housing that will support older adults’ quality of life. This mixed-method study is the first Canadian study to examine the impact of cohousing on older adults’ quality of life and involved 23 participants. The older adults rated their quality of life very high, especially in the environmental, physical, and psychological domains of the World Health Organization Quality of Life (WHOQOL_BREF) survey; quality of life in the social domain was rated low, which was surprising in light of the focus group data findings. Four themes of “belonging in a community”, “life in the community”, “changes associated with aging,” and “aging in place” emerged from the qualitative data to explain factors that influence older adults’ quality of life. This research provides foundational, strong evidence that seniors’ cohousing is an innovative housing solution that can support older adults’ quality of life.
Autism spectrum disorder (ASD) is a multifaceted disorder that is pervasive across sensory, behavioural, emotional, social and motor dysfunction. Research suggests up to 50% of children diagnosed with ASD demonstrate motor difficulties. An inability to perform complex motor movements often leads to preference for simple and sedentary activities. Furthermore, social communication difficulties significantly impair the ability to engage in group activities and form peer relationships. The Sports and Recreation Group is a fee-based athletic program that aims to provide a structured environment to engage children and adolescents with ASD in a small therapeutic group program. Resistance training, plyometric, and balance and coordination are examples of some of the complex motor movements implemented. The group consisted of four participants diagnosed with ASD, aged 9–16 years. Duration involved two blocks of 8 consecutive weeks across three terms. Baseline data was collected from participant self-reports and parent reports using the PedsQL™ and again at 6-months follow-up. Results from this case study highlighted an increase in motor abilities and quality of life by enhancing the individual’s functional movements and psychosocial functioning. This article argues for the inclusion of athletic programs to be integrated as part of the therapeutic planning for children and adolescents with ASD.
To evaluate the relationship between spiritual well-being (SpWB) and quality of life (QoL) in cancer (CA) survivors.
The current study was conducted in the oncology center at a university hospital in Central Anatolia/Turkey. In this study, a descriptive cross-sectional survey design was used. The data collected included: a questionnaire form, the current study was conducted in the oncology center at a university hospital in Central Anatolia/Turkey. In this study, a descriptive cross-sectional survey design was used. SpWB was assessed by the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being Scale, version 4 (FACIT-Sp12, v. 4), including Meaning, Peace, and Faith subscales. The QoL was evaluated using the Functional Assessment of Cancer Therapy-General scale (FACT-G, v. 4). The results were analyzed using descriptive statistics, Pearson correlations, independent sample t-test, Kruskal-Wallis, and Mann-Whitney U test.
One hundred fifty patients participated in this study: 61.30% female, 78% 45 years of age or older, 94.70% married, 46% had finished, and 69% had gastrointestinal tract CA. The mean age was 53.48 (SD = 9.43). The majority of participants (96.7%) endorsed “a force pushing them a will to live” while 59.3% supported “the power of relationships with others.” There was a positive, strong correlation between overall QoL and SpWB (r = 0.619, p < 0.01). The Meaning dimensions of SpWB with Functional Well-Being (FWB) and overall QoL (r = 0.512; 0.595, p < 0.000 respectively), Peace with Emotional Well-Being (EWB) and FWB (r = 0.598; 0.540, p < 0.000 respectively) dimensions of FACT-G and overall QoL (r = 0.609, p < 0.001) were strong correlated. Faith and QoL were not significantly correlated.
Significance of results
This study demonstrates that SpWB positively contributed to the QoL of CA survivors. SpWB is not necessarily limited to any specific types of beliefs or practices. For some people, faith in self, others and/or God constitutes, in large part, the meaning, purpose, and fulfillment they find in life.
Cancer diagnosis affects patients, their families, and their caregivers in particular. This study focused on the validation of the CareGiver Oncology Quality of Life (CarGOQoL) questionnaire in Portuguese caregivers of patients with multiple myeloma, from the caregiver's point of view.
This was a cross-sectional study with 146 caregivers of patients with multiple myeloma from outpatient medical oncology and clinical hematology consultations from five hospitals in north and central Portugal. Participants were assessed on quality of life (QoL), psychological morbidity and social support.
The Portuguese version maintains 17 of the original 29 items version, maintaining general coherence and a dimensional structure that is clinically interpretable. Reliability findings indicated good internal consistency for the total scale (0.86) and respective subscales (0.75 to 0.88), which is in agreement with the alpha values from the previous CarGOQoL validation study for the corresponding subscales (0.74 to 0.89) and total scale (0.90).
Significance of results
The CarGOQoL is a reliable and valid tool for clinical trials and intervention programs to assess QoL in caregivers of myeloma patients. Future studies should validate the adapted version in caregivers of other types of cancer patients including other chronic diseases.
To describe the impact of CHD surgery in early childhood on quality of life in children aged 10–16 years with surgically corrected Ventricular Septal Defect, Transposition of the Great Arteries, and Tetralogy of Fallot.
A cross-sectional survey study of quality of life survey on 161 children and adolescents aged 10–16 years with surgically corrected Ventricular Septal Defect, Transposition of the Great Arteries, and Tetralogy of Fallot. The international Paediatric Quality of Life 4.0 quality of life questionnaires were applied and collected for assessment from patients and parents. The endpoints were total, physical, emotional, social, and school quality of life scores.
The quality of life total and school scores was significantly lower in children with CHD than their healthy peers. There was no significant difference in quality of life between the three CHD groups. All three CHD groups had a significantly lower total (7.7–13.2%, p<0.001) and school scores (21.1–31.6%, p<0.001) than the control group. The tetralogy of Fallot group was the only group that had significantly lower scores in the physical subscale (p<0.001) than the controls.
Children and adolescents with surgically corrected CHD show losses in quality of life in total and school scores compared to healthy controls. The tetralogy of Fallot group was the only CHD group that had significantly lower physical score than the controls.
The aim of this narrative review is to assess and present evidence on the mechanisms of action of probiotics in constipation, their effectiveness and their utilisation by patients and healthcare professionals. Chronic constipation is a common bothersome disorder that has a considerable impact on patients' quality of life. Probiotics have been increasingly investigated for their effectiveness in various disorders, including chronic constipation. Probiotics may affect gut motility and constipation through their impact on the gut microbiota and fermentation, the central and enteric nervous system and the immune system. However, evidence for the effectiveness of probiotics in the management of constipation remains varied, with some strains demonstrating improvements, while others show no effect. Despite the uncertainty in evidence and the fact that the majority of healthcare professionals do not recommend probiotics for constipation, an increased prevalence of probiotic use by people with constipation has been shown. Therefore, there is a need for public health strategies to inform the public about where strong evidence of probiotic effectiveness exist, and where evidence is still weak. Education of healthcare professionals on the increased utilisation of probiotics for constipation by the public and on current evidence for the effectiveness of specific strains is also required.
Paediatric heart transplantation in Australia is centralised at The Royal Children’s Hospital, Melbourne. Survival to adulthood is improving but the ongoing need for complex medical therapy, surveillance, and potential for late complications continues to impact on quality of life. Quality of life in adults who underwent heart transplantation in childhood in Australia has not been assessed.
Cross-sectional quality of life data were collected from paediatric heart transplant survivors >18 years of age using Rand 36-Item Health Survey. Self-reported raw scores were transformed to a 0–100 scale with higher scores indicating better quality of life. Mean scores were compared to National Health Survey Short Form-36 Population Norms data using the independent sample t-test.
A total of 64 patients (64/151) who underwent transplantation at The Royal Children’s Hospital between 1988 and 2016 survived to adulthood. In total 51 patients (51/64, 80%) were alive at the time of the study and 27 (53%) responded with a mean age of 25 ± 6 years, being a median of 11 years (interquartile range 7–19) post-transplantation. Most self-reported quality of life subscale scores were not significantly different from the Australian normative population data. However, self-reported ‘General Health’ was significantly worse than normative data (p = 0.02). Overall, 93% (25/27) reported their general health as being the same or better compared to 1-year ago.
Adult survivors after paediatric heart transplantation in Australia report good quality of life in multiple domains and demonstrate independence in activities of daily living and employment. However, lifelong medical treatment may affect perceptions of general health.
Overweight and obesity may increase risk of disease progression in men with prostate cancer, but there have been few studies of weight loss interventions in this patient group. In this study overweight or obese men treated for prostate cancer were randomised to a self-help diet and activity intervention with telephone-based dietitian support or a wait-list mini-intervention group. The intervention group had an initial group meeting, a supporting letter from their urological consultant, three telephone dietitian consultations at 4-week intervals, a pedometer and access to web-based diet and physical activity resources. At 12 weeks, men in both groups were given digital scales for providing follow-up weight measurements, and the wait-list group received a mini-intervention of the supporting letter, a pedometer and access to the web-based resources. Sixty-two men were randomised; fifty-four completed baseline and 12-week measurements, and fifty-one and twenty-seven provided measurements at 6 and 12 months, respectively. In a repeated-measures model, mean difference in weight change between groups (wait-list mini-intervention minus intervention) at 12 weeks was −2·13 (95 % CI −3·44, −0·82) kg (P = 0·002). At 12 months the corresponding value was −2·43 (95 % CI −4·50, −0·37) kg (P = 0·022). Mean difference in global quality of life score change between groups at 12 weeks was 12·3 (95 % CI 4·93, 19·7) (P = 0·002); at 12 months there were no significant differences between groups. Results suggest the potential of self-help diet and physical activity intervention with trained support for modest but sustained weight loss in this patient group.
To evaluate the health status and quality of life of young patients who had cone reconstruction for Ebstein anomaly.
We reviewed all patients who had cone reconstruction from 2007 to 2016 at our institution. Prospective surveys were mailed to all eligible patients. Quality of life was assessed using the PedsQL 4.0 Generic Core Scales, including four domains: physical, emotional, social, and school functioning.
Of 116 eligible patients, 72 (62%) responded. About 96% reported their health as excellent or good, and 52% were symptom-free. Only 37% of patients were taking any medications, the most common of which was aspirin (30%). Only 19% had been hospitalised for cardiac reasons following cone reconstruction. The average self-reported quality of life was 85.3/100, whereas the average parent proxy-reported quality of life was 81.8/100. There was no difference by self or parent proxy-report in quality of life between cone reconstruction patients and healthy children; however, quality of life was significantly better compared with children with other chronic health conditions. By self-report and parent proxy-report, 15.1 and 16.7% of patients were deemed “at risk” for reduced quality of life, respectively. Socially, 63/64 (98%) patients over 5 years old were either full-time students or working full-time.
Children with Ebstein anomaly following cone reconstruction have excellent quality of life comparable with healthy peers and significantly better than other children with chronic health conditions. Families of children with Ebstein anomaly can expect excellent quality of life, long-term health status, and social functioning following cone reconstruction.
The study of coping strategies has provided valuable insights about the process of helping cancer patients adapt to their disease. However, new approaches must be explored to increase the knowledge of this adjustment. In this study, we will analyze the relationship between patients’ psychological well-being and quality of life and less well-studied constructs such as the belief in a just world (BJW) and emotional intelligence (EI). Sixty-eight cancer patients (35 men, 33 women; mean age 53.5 years; range: 20–86) were asked about their personal and general BJW, EI, Perception of Quality of Life, Anxiety, and Depression. Different multiple regression analyses showed that patients’ personal BJW negatively predicted their anxiety (p < .05) and a trend to a better quality of life. In addition, patients with high scores in the Mood Repair subfactor of EI showed better quality of life (p < .05), and those with higher Attention to Feelings exhibited more Anxiety (p < .01) and a trend to more Depression. These results underline the need to take into consideration new factors, such as BJW and EI, in clinical interventions for cancer patients.
The aims of this study were to identify the unmet care needs and to examine the mediating effect of unmet supportive care needs in the relationship between functional status and quality of life (QOL) in Korean patients with amyotrophic lateral sclerosis (ALS).
This was a cross-sectional study conducted among 186 patients with ALS recruited from a tertiary hospital in Seoul, South Korea. ALS patients' functional status, unmet supportive care needs, and QOL were assessed by Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised, the Amyotrophic Lateral Sclerosis Supportive Care Needs Instrument, and the Amyotrophic Lateral Sclerosis Specific Quality of Life – Revised Instrument, respectively. Mediation analysis was tested using Baron and Kenny's regression analysis and a Sobel test.
The mean score for functional status was 33.35 ± 8.89; for unmet supportive care needs it was 2.40 ± 0.66; and for QOL it was 4.95 ± 1.29. Functional status was significantly correlated with unmet care needs and QOL. Unmet care needs satisfaction demonstrated a complete mediating effect on the relationship between functional status and QOL of the patients with ALS (β = –0.53, p < 0.001) and the effect was significant (Sobel test; Z = 5.48, p < 0.001).
Significance of results
Although QOL was negatively affected by the functional status in our sample, the relationship was fully mediated via unmet supportive care needs. Because there is no cure for ALS, and the condition is rapidly progressive with a lethal outcome, providing care by meeting patients’ needs is a critical aspect of caring for these patients. Early assessment of supportive care needs, providing services, and referring ALS patients to appropriate resources could enhance their QOL.
The focus of interventions for adults living with HIV (ALH) in Nigeria has been mostly on prevention and provision of antiretroviral therapy (ART) with little consideration to nutrition-related matters. Therefore, the present study aimed to improve the quality of life (QoL) and anthropometric status of ALH in Abeokuta, Nigeria.
A quasi-experimental design where 200 conveniently selected participants were stratified by gender and duration on ART. The intervention group (n 100) received the nutrition education programme (NEP) for 12 weeks. The control group received a brochure on nutrition guidelines for ALH. Socio-biographical information, QoL and anthropometric status were assessed using previously validated questionnaires and standard techniques at baseline, week 12 and week 24. Generalised least squares (GLS) regression analysis was used for group comparisons. Anthropometric status was summarised by gender.
Two tertiary hospitals in Abeokuta, Nigeria.
The NEP led to significant improvement in the physical functioning (week 12 and 24: P < 0·01), role limitation due to physical health (week 12: P = 0·01; week 24: P = 0·002) and pain (week 12: P = 0·01) constructs of the QoL of the intervention group compared with the control group. There was no significant difference (P = 0·07) between the mean weights of the two groups at baseline.
There was a significant improvement at week 12 and week 24 in the QoL of the intervention participants. The results indicated that a tailored NEP could make a positive contribution to the management of ALH.
In the present research, three tests, Pinel’s Stigma Consciousness (1999); Quality of Life by Ruiz and Baca (1993); and the Social Identity by Cameron (2004), were adapted and validated by hearing loss of different ages, educational levels, marital status and occupation in order to make the sample more representative. The content validity was established using a group of experts formed by disabled people and technicians in disability with the purpose of adapting the items of the different tests. The reliability of the three tests was adequate with values higher than .70. The Stigma Consciousness test presented a unifactorial structure, that of Quality of Life with four factors (General Satisfaction, Free Time, Physical and Psychological Well-being and Social Support) and Social Identity with three factors (Centrality, Ingroup Ties and Ingroup Affect). Goodness-of-fit tests showed adequate values. We also analyzed the convergent and discriminant validity of the scale in order to see which tests presented major and minor associations and the criterion validity relating the scales to the level of studies, the percentage of disability and the work place of the evaluated ones. Finally, we analyzed the similarities between our results and those obtained in the original tests.