scholarly journals A Critical Review of the Impact of Sarcoma on Psychosocial Wellbeing

Sarcoma ◽  
2019 ◽  
Vol 2019 ◽  
pp. 1-18 ◽  
Author(s):  
Lesley Storey ◽  
Lorna A. Fern ◽  
Ana Martins ◽  
Mary Wells ◽  
Lindsey Bennister ◽  
...  

Background. Previous reviews of outcomes in specific sarcoma populations suggest patients have poor quality of life. In most of these reviews, there is a predominant focus on physical function rather than psychosocial outcome. The aim of this review was to describe the psychosocial impact of diagnosis and treatment on patients with all types of sarcoma. Methods. Searches were conducted through six electronic databases for publications of any study design using a validated patient-reported outcome measure reporting the psychosocial impact in this population. Results. Eighty-two studies fulfilled the inclusion criteria. Most (65%) were assessed of being of reasonable quality. The most common aspect of psychosocial wellbeing measured was quality of life (80%). Due to the heterogeneity of methods, outcomes, and populations, it was not possible to make definitive conclusions. It seems there is an improvement in the physical aspects of quality of life over time but not in psychosocial function or mental health. There was no change in mental health scores, but patients reported an improvement in adjusting to normal life. There are no differences according to the type of surgery patients receive, and psychosocial outcomes tend to be poorer than the general population. There is no consistency in identifying the factors that predict/influence psychosocial wellbeing. Conclusion. The published literature does not provide a clear understanding of the impact of sarcoma diagnosis and treatment on psychosocial wellbeing. Instead, the review demonstrates a need for well-designed studies in this area and a more consistent approach to the measurement of patient-reported outcomes, which include psychosocial domains. Recommendations for future research have been proposed.

Author(s):  
Claudia A Bargon CA ◽  
Marilot CT Batenburg ◽  
Lilianne E van Stam ◽  
Dieuwke R Mink van der Molen ◽  
Iris E van Dam ◽  
...  

ABSTRACTPurposeThe COVID-19 pandemic and the resulting social distancing and lockdown measures are having a substantial impact on daily life and medical management of people with breast cancer. We evaluated to what extent these changes have affected quality of life and physical, and psychosocial wellbeing of people (being) treated for breast cancer.MethodsThis study was conducted within the prospective Utrecht cohort for Multiple BREast cancer intervention studies and Long-term evaluation (UMBRELLA). Shortly after the implementation of COVID-19 measures, extra questionnaires were sent to 1595 cohort participants, including standard UMBRELLA quality of life (EORTC) questionnaires. Patient-reported outcomes (PROs) were compared to the most recent PROs collected within UMBRELLA before COVID-19. The impact of COVID-19 on PROs was evaluated using mixed models analysis.ResultsIn total, 1051 patients (66%) completed the questionnaires. One third (n = 327, 31%) reported a higher threshold to contact their general practitioner due to COVID-19. A significant deterioration in emotional functioning was observed (82·6 to 77·9, p < 0.001) and 505 (48%, 95% CI 45-51) patients reported moderate to severe loneliness. Small significant improvements were observed in QoL, physical-, social- and role functioning scores. In the subgroup of 51 patients under active treatment, there was a strong deterioration in social functioning (69·8 to 5·0, p = 0·03).ConclusionDue to COVID-19, patients (being) treated for breast cancer are less likely to contact physicians, and experience a deterioration in emotional functioning. Patients undergoing active treatment report a strong drop in social functioning. One in two patients reports (severe) loneliness. Online applications facilitating peer contact and e-mental health interventions could support mental health and social interaction times of total lockdown or social distancing.


2015 ◽  
Vol 33 (3_suppl) ◽  
pp. 706-706
Author(s):  
Pierre Y. Cheung ◽  
Tian Yang Darren Liu ◽  
Jason D. Kim ◽  
Winson Y. Cheung

706 Background: Patient-reported measures such as psychosocial wellbeing and quality of life have been reported to correlate with cancer survival, but the specific factors within these constructs that associate with outcomes remains poorly defined. Our aim was to examine the effect of baseline anxiety and depression on OS in a population-based cohort of CRC patients. Methods: Patients diagnosed with CRC in 2008, referred to any 1 of 5 regional cancer centers in British Columbia, and who completed a baseline questionnaire to evaluate anxiety and depression were reviewed. We developed a scoring system based on these patient-reported survey data to characterize intensity and subsequently categorized patients as having no, mild, moderate or severe anxiety and/or depression. Vital statistics were captured by medical records. Unadjusted Kaplan-Meier methods and multivariate Cox regression models that controlled for additional socio-demographic and clinical characteristics were constructed to correlate anxiety and depression with OS. Results: A total of 449 patients were included: median age was 66 years (range 26-92), 52% were men, and 69% were white. A significant proportion of respondents reported anxiety (58%) or depression (45%) at baseline. Among them, the majority indicated their anxiety and depressive symptoms were severe (43% and 43%, respectively). Women and those who were single or unmarried were more likely to have anxiety and depression (p<0.001 and p=0.02, respectively). In unadjusted analyses, we observed a trend where increased severity of anxiety (p=0.07) and depression (p=0.04) correlated with worse outcomes. In Cox regression that considered other prognostic factors, however, this observation failed to persist, and neither anxiety nor depression associated with OS (Table). Conclusions: The impact of psychosocial wellbeing and quality of life on CRC outcomes that have been previously described in the literature are unlikely to be mediated through baseline anxiety or depression. [Table: see text]


2020 ◽  
Vol 41 (05) ◽  
pp. 716-732
Author(s):  
Ogugua Ndili Obi

AbstractHealth-related quality of life (HRQoL) describes an individual's perception of the impact of health, disease, and treatment on their quality of life (QoL). It is a reflection of how the manifestation of an illness and its treatment is personally experienced. Assessing HRQoL is particularly important in sarcoidosis because the attributable disease mortality is relatively low, and one of the major reasons for initiating treatment is to improve quality of life. HRQoL has been assessed in sarcoidosis using various generic and sarcoid-specific patient-reported outcome measures (PROMs). It is important that both the direct and indirect effects of the disease, as well as potential toxicities of therapy, are captured in the various PROMs used to assess HRQoL in sarcoidosis. This article provides a general overview of HRQoL in patients with sarcoidosis. It describes the various PROMs used to assess HRQoL in sarcoidosis and addresses the various factors that influence HRQoL in sarcoidosis. Specific attention is paid to fatigue, small fiber neuropathy, corticosteroid therapy, and other disease-specific factors that affect HRQoL in sarcoidosis. It also provides an insight into interventions that have been associated with improved HRQoL in sarcoidosis and offers suggestions for future research in this important area.


Jurnal NERS ◽  
2019 ◽  
Vol 14 (3) ◽  
pp. 35
Author(s):  
I Komang Leo Triandana Arizona ◽  
Tintin Sukartini ◽  
Ferry Efendi ◽  
Primalova Septiavy Estiadewi ◽  
Ni Putu Dian Ayu Anggraeni

Introduction: Cancer-related fatigue (CRF) is one of the symptoms commonly experienced and it is a subjective feeling felt by cancer patients. The aim of this systematic review was to summarize how fatigue has been described from the perspective of adult cancer patients, the impact of fatigue on their quality of life, what the patient reported as contributing factors and potential coping strategies to reduce fatigue.Methods: A systematic review is in line with PRISMA guidelines. Five databases were systematically searched (Scopus, PubMed, Springerlink, ProQuest and Science Direct) from January 2009 to February 2019 for qualitative studies describing the experience of adult cancer patients using a predefined search strategy and any relevant keywords.Results: In total, 13 out of 4692 studies were included. The ages of the included patient cancer ranged from 26 to 84 years. The majority of studies used in-depth interviews and semi-structured interviews to elicit the participant’s experiences of fatigue. Four themes were identified: the perception of cancer-related fatigue, the etiology of cancer fatigue, impact and coping strategies.Conclusion: Fatigue is impactful on quality of life from the perspective of cancer patients. Future research should focus on the prospective exploration of the impact of fatigue on woman's and men's health and identifying approaches to reduce fatigue. 


2020 ◽  
Vol 29 (4) ◽  
pp. 2097-2108
Author(s):  
Robyn L. Croft ◽  
Courtney T. Byrd

Purpose The purpose of this study was to identify levels of self-compassion in adults who do and do not stutter and to determine whether self-compassion predicts the impact of stuttering on quality of life in adults who stutter. Method Participants included 140 adults who do and do not stutter matched for age and gender. All participants completed the Self-Compassion Scale. Adults who stutter also completed the Overall Assessment of the Speaker's Experience of Stuttering. Data were analyzed for self-compassion differences between and within adults who do and do not stutter and to predict self-compassion on quality of life in adults who stutter. Results Adults who do and do not stutter exhibited no significant differences in total self-compassion, regardless of participant gender. A simple linear regression of the total self-compassion score and total Overall Assessment of the Speaker's Experience of Stuttering score showed a significant, negative linear relationship of self-compassion predicting the impact of stuttering on quality of life. Conclusions Data suggest that higher levels of self-kindness, mindfulness, and social connectedness (i.e., self-compassion) are related to reduced negative reactions to stuttering, an increased participation in daily communication situations, and an improved overall quality of life. Future research should replicate current findings and identify moderators of the self-compassion–quality of life relationship.


2019 ◽  
Vol 31 (2) ◽  
pp. 222-228 ◽  
Author(s):  
Joshua L. Golubovsky ◽  
Arbaz Momin ◽  
Nicolas R. Thompson ◽  
Michael P. Steinmetz

OBJECTIVEBertolotti syndrome is a rare spinal condition that causes low-back pain due to a lumbosacral transitional vertebra (LSTV), which is a pseudoarticulation between the fifth lumbar transverse process and the sacral ala. Bertolotti syndrome patients are rarely studied, particularly with regard to their quality of life. This study aimed to examine the quality of life and prior treatments in patients with Bertolotti syndrome at first presentation to the authors’ center in comparison with those with lumbosacral radiculopathy.METHODSThis study was a retrospective cohort analysis of patients with Bertolotti syndrome and lumbosacral radiculopathy due to disc herniation seen at the authors’ institution’s spine center from 2005 through 2018. Diagnoses were confirmed with provider notes and imaging. Variables collected included demographics, diagnostic history, prior treatment, patient-reported quality of life metrics, and whether or not they underwent surgery at the authors’ institution. Propensity score matching by age and sex was used to match lumbosacral radiculopathy patients to Bertolotti syndrome patients. Group comparisons were made using t-tests, Fisher’s exact test, Mann-Whitney U-tests, Cox proportional hazards models, and linear regression models where variables found to be different at the univariate level were included as covariates.RESULTSThe final cohort included 22 patients with Bertolotti syndrome who had patient-reported outcomes data available and 46 propensity score–matched patients who had confirmed radiculopathy due to disc herniation. The authors found that Bertolotti syndrome patients had significantly more prior epidural steroid injections (ESIs) and a longer time from symptom onset to their first visit. Univariate analysis showed that Bertolotti syndrome patients had significantly worse Patient-Reported Outcomes Measurement Information System (PROMIS) mental health T-scores. Adjustment for prior ESIs and time from symptom onset revealed that Bertolotti syndrome patients also had significantly worse PROMIS physical health T-scores. Time to surgery and other quality of life metrics did not differ between groups.CONCLUSIONSPatients with Bertolotti syndrome undergo significantly longer workup and more ESIs and have worse physical and mental health scores than age- and sex-matched patients with lumbosacral radiculopathy. However, both groups of patients had mild depression and clinically meaningful reduction in their quality of life according to all instruments. This study shows that Bertolotti syndrome patients have a condition that affects them potentially more significantly than those with lumbosacral radiculopathy, and increased attention should be paid to these patients to improve their workup, diagnosis, and treatment.


2019 ◽  
Vol 15 (4) ◽  
pp. 238-244
Author(s):  
Cristina Zarbo ◽  
Agostino Brugnera ◽  
Rita Secomandi ◽  
Ilario Candeloro ◽  
Chiara Malandrino ◽  
...  

Objective: Infertility has a severe impact on quality of life and mental health. This condition could be exacerbated by the existence of comorbid medical disease, like endometriosis. The aim of this critical narrative review is the examination of the state of the art about the quality of life and mental health in infertile women with endometriosis. Methods: We performed a rigorous and systematic search for studies on multiple electronic databases. A total of 6 papers were included in the review and were subjected to interpretative and critical narrative synthesis. Results and Discussion: Major findings are resumed in the following points: (a) infertile women with endometriosis when compared to infertile ones without endometriosis show higher depression, stress perception, and anxiety, and lower general quality of life; (b) quality of life specifically related to infertility is similar among women with and without endometriosis and seems to be related to personality and beliefs factors; (c) giving birth to a child is related to better mental quality of life; (d) during assisted reproductive treatment (ART) stimulation, infertile women with endometriosis have a decrease of dysmenorrhea and dyspareunia; (e) satisfaction of ART is related to the number of attempts, treatment accomplishment and pregnancy test outcomes. Clinical implications of these findings and suggestions for future researches were discussed. Conclusion: Concluding, it is crucial to assess the psychological factors related to endometriosis and infertility to reduce the impact of these diseases on quality of life and mental health, provide adequate support to these patients, improve their satisfaction and increase the change to get pregnant.


2019 ◽  
Vol 101-B (3) ◽  
pp. 272-280 ◽  
Author(s):  
F. G. M. Verspoor ◽  
M. J. L. Mastboom ◽  
G. Hannink ◽  
W. T. A. van der Graaf ◽  
M. A. J. van de Sande ◽  
...  

Aims The aim of this study was to evaluate health-related quality of life (HRQoL) and joint function in tenosynovial giant cell tumour (TGCT) patients before and after surgical treatment. Patients and Methods This prospective cohort study run in two Dutch referral centres assessed patient-reported outcome measures (PROMs; 36-Item Short-Form Health Survey (SF-36), visual analogue scale (VAS) for pain, and Western Ontario and McMaster Universities Osteoarthritis Index (WOMAC)) in 359 consecutive patients with localized- and diffuse-type TGCT of large joints. Patients with recurrent disease (n = 121) and a wait-and-see policy (n = 32) were excluded. Collected data were analyzed at specified time intervals preoperatively (baseline) and/or postoperatively up to five years. Results A total of 206 TGCT patients, 108 localized- and 98 diffuse-type, were analyzed. Median age at diagnosis of localized- and diffuse-type was 41 years (interquartile range (IQR) 29 to 49) and 37 years (IQR 27 to 47), respectively. SF-36 analyses showed statistically significant and clinically relevant deteriorated preoperative and immediate postoperative scores compared with general Dutch population means, depending on subscale and TGCT subtype. After three to six months of follow-up, these scores improved to general population means and continued to be fairly stable over the following years. VAS scores, for both subtypes, showed no statistically significant or clinically relevant differences pre- or postoperatively. In diffuse-type patients, the improvement in median WOMAC score was statistically significant and clinically relevant preoperatively versus six to 24 months postoperatively, and remained up to five years’ follow-up. Conclusion Patients with TGCT report a better HRQoL and joint function after surgery. Pain scores, which vary hugely between patients and in patients over time, did not improve. A disease-specific PROM would help to decipher the impact of TGCT on patients’ daily life and functioning in more detail. Cite this article: Bone Joint J 2019;101-B:272–280.


2020 ◽  
pp. 105566562098133
Author(s):  
Alyssa Fritz ◽  
Diana S. Jodeh ◽  
Fatima Qamar ◽  
James J. Cray ◽  
S. Alex Rottgers

Introduction: Oronasal fistulae following palatoplasty may affect patients’ quality of life by impacting their ability to eat, speak, and maintain oral hygiene. We aimed to quantify the impact of previous oronasal fistula repair on patients’ quality of life using patient-reported outcome psychometric tools. Methods: A cross-sectional study of 8- to 9-year-old patients with cleft palate and/or lip was completed. Patients who had a cleft team clinic between September 2018 and August 2019 were recruited. Participants were divided into 2 groups (no fistula, prior fistula repair). Differences in the individual CLEFT-Q and Child Oral Health Impact Profile-Short Form 19 (COHIP-SF 19) Oral Health scores between the 2 groups were evaluated using a multivariate analysis controlling for Veau classification and syndromic diagnosis. Results: Sixty patients with a history of cleft palate were included. Forty-two (70%) patients had an associated cleft lip. Thirty-two (53.3%) patients had no history of fistula and 28 (46.7%) patients had undergone a fistula repair. CLEFT-Q Dental, Jaw, and Speech Function were all higher in patients without a history of a fistula repair; however, none of these differences were statistically significant. The COHIP-SF 19 Oral Health score demonstrated a significantly lower score in the fistula group, indicating poorer oral health ( P = .05). Conclusions: One would expect that successful repair of a fistula would result in improved function and patient satisfaction, but the consistent trend toward lower CLEFT-Q scores and significantly increased COHIP-SF 19 Oral Health scores in our study group suggests that residual effects linger and that the morbidity of a fistula may not be completely treated with a secondary correction.


Author(s):  
Chia-Jung Lee ◽  
Yen Hsu

This study explored the technology learning model of the elderly in a senior learning center under the impact of the COVID-19 pandemic. Many senior learning centers were closed during the pandemic, and many of them adopted the mode of online education. However, problems such as decreased motivation and a lack of peer interaction still exist. To solve these problems, this study used the easy-to-implement calligraphy AR approach and E-book approach to conduct a quasi-experiment on the elderly of a calligraphy course offered by a senior learning center. The results show a higher learning motivation among the elderly who use calligraphy AR. The learning effectiveness and technology acceptance of the elderly in the E-book learning group were higher than those in the calligraphy AR group. The elderly mentioned that the E-book learning approach is more user-friendly. In general, in the face of the COVID-19 pandemic affecting the suspension of classes in senior centers, education through the development of technology has stimulated the growth of education in advanced learning centers. Through this kind of scientific and technological learning method, it will bring a whole new experience to the elderly. It can improve the stress relief methods, mental health, and quality of life of the elderly during the COVID-19 emergency shutdown, and provide a novel calligraphy technique learning experience for the elderly. Therefore, we believe that the calligraphy AR learning approach and the calligraphy E-book learning approach are practical and may promote quality of life and mental health of the elderly during the emergency closures due to COVID-19, providing elderly attendees with a novel calligraphy technology learning experience.


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