scholarly journals The Patient Perspective on the Impact of Tenosynovial Giant Cell Tumors on Daily Living: Crowdsourcing Study on Physical Function and Quality of Life

2017 ◽  
Author(s):  
Monique Josephine Mastboom ◽  
Rosa Planje ◽  
Michiel Adreanus van de Sande
2017 ◽  
Author(s):  
Monique Josephine Mastboom ◽  
Rosa Planje ◽  
Michiel Adreanus van de Sande

BACKGROUND Tenosynovial giant cell tumor (TGCT) is a rare, benign lesion affecting the synovial lining of joints, bursae, and tendon sheaths. It is generally characterized as a locally aggressive and often recurring tumor. A distinction is made between localized- and diffuse-type. The impact of TGCT on daily living is currently ill-described. OBJECTIVE The aim of this crowdsourcing study was to evaluate the impact of TGCT on physical function, daily activities, societal participation (work, sports, and hobbies), and overall quality of life from a patient perspective. The secondary aim was to define risk factors for deteriorated outcome in TGCT. METHODS Members of the largest known TGCT Facebook community, PVNS is Pants!!, were invited to an e-survey, partially consisting of validated questionnaires, for 6 months. To confirm disease presence and TGCT-type, patients were requested to share histological or radiological proof of TGCT. Unpaired t tests and chi-square tests were used to compare groups with and without proof and to define risk factors for deteriorated outcome. RESULTS Three hundred thirty-seven questionnaires, originating from 30 countries, were completed. Median age at diagnosis was 33 (interquartile range [IQR]=25-42) years, majority was female (79.8% [269/337]), diffuse TGCT (70.3% [237/337]), and affected lower extremities (knee 70.9% [239/337] and hip 9.5% [32/337]). In 299 lower-extremity TGCT patients (32.4% [97/299]) with disease confirmation, recurrence rate was 36% and 69.5% in localized and diffuse type, respectively. For both types, pain and swelling decreased after treatment; in contrast, stiffness and range of motion worsened. Patients were limited in their employment (localized 13% [8/61]; diffuse 11.0% [21/191]) and sport-activities (localized 58% [40/69]; diffuse 63.9% [147/230]). Compared with general US population, all patients showed lower Patient-Reported Outcomes Measurements Information System-Physical Function (PROMIS-PF), Short Form-12 (SF-12), and EuroQoL 5 Dimensions 5 Levels (EQ5D-5L) scores, considered clinically relevant, according to estimated minimal important difference (MID). Diffuse versus localized type scored almost 0.5 standard deviation lower for PROMIS-PF (P<.001) and demonstrated a utility score of 5% lower for EQ-5D-5L (P=.03). In localized TGCT, recurrent disease and ≥2 surgeries negatively influenced scores of Visual Analog Scale (VAS)-pain/stiffness, SF-12, and EQ-5D-5L (P<.05). In diffuse type, recurrence resulted in lower score for VAS, PROMIS-PF, SF-12, and EQ-5D-5L (P<.05). In both types, patients with treatment ≤1year had significantly lower SF-12. CONCLUSIONS TGCT has a major impact on daily living in a relatively young and working population. Patients with diffuse type, recurrent disease, and ≥2 surgeries represent lowest functional and quality of life outcomes. Physicians should be aware that TGCT patients frequently continue to experience declined health-related quality of life and physical function and often remain limited in daily life, even after treatment(s).


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.


BMC Cancer ◽  
2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Dominic O’Connor ◽  
Malcolm Brown ◽  
Martin Eatock ◽  
Richard C. Turkington ◽  
Gillian Prue

Abstract Background Surgical resection remains the only curative treatment for pancreatic cancer and is associated with significant post-operative morbidity and mortality. Patients eligible for surgery, increasingly receive neo-adjuvant therapy before surgery or adjuvant therapy afterward, inherently exposing them to toxicity. As such, optimizing physical function through exercise during treatment remains imperative to optimize quality of life either before surgery or during rehabilitation. However, current exercise efficacy and prescription in pancreatic cancer is unknown. Therefore, this study aims to summarise the published literature on exercise studies conducted in patients with pancreatic cancer undergoing treatment with a focus on determining the current prescription and progression patterns being used in this population. Methods A systematic review of four databases identified studies evaluating the effects of exercise on aerobic fitness, muscle strength, physical function, body composition, fatigue and quality of life in participants with pancreatic cancer undergoing treatment, published up to 24 July 2020. Two reviewers independently reviewed and appraised the methodological quality of each study. Results Twelve studies with a total of 300 participants were included. Heterogeneity of the literature prevented meta-analysis. Exercise was associated with improvements in outcomes; however, study quality was variable with the majority of studies receiving a weak rating. Conclusions High quality evidence regarding the efficacy and prescription of exercise in pancreatic cancer is lacking. Well-designed trials, which have received feedback and input from key stakeholders prior to implementation, are required to examine the impact of exercise in pancreatic cancer on key cancer related health outcomes.


2019 ◽  
Vol 18 ◽  
pp. 153473541984219 ◽  
Author(s):  
Takuya Fukushima ◽  
Jiro Nakano ◽  
Shun Ishii ◽  
Ayumi Natsuzako ◽  
Haruna Kawachi ◽  
...  

Purpose. Patients with hematological malignancies often present with reduced muscle and physical functions, which are caused by the disease or related treatment. Moreover, patients with hematological malignancies rapidly develop low hemoglobin levels, and this may affect muscle and physical functions. This study aimed to identify the influence of hemoglobin levels on muscle and physical functions in patients with hematological malignancies. Methods. Using a cross-sectional study design, this study included 60 patients with hematological malignancies (mean age = 68.0 ± 10.2 years, women 56.7%) who were hospitalized for chemotherapy- and radiotherapy-related side effects and underwent examination for skeletal muscle mass (SMM), muscle strength, physical function, activities of daily living (ADLs), psychological status, and quality-of-life (QOL), including physical symptoms. Participants were divided into 3 groups according to tertiles of hemoglobin levels: low (n = 19), middle (n = 20), and high (n = 21). Evaluation items were compared among the 3 groups. Results. There was no significant difference among the 3 groups in terms of SMM. The low hemoglobin group showed significantly higher values of fatigue and dyspnea and lower values of muscle strength, ADLs, and QOL than the high hemoglobin group. Conclusions. Hemoglobin levels did not affect SMM; however, muscle weakness, decrease in physical function, physical symptoms such as fatigue and dyspnea, and decline in ADLs and QOL were observed in patients with low hemoglobin levels.


2020 ◽  
Vol 5 (4) ◽  
pp. 2473011420S0036
Author(s):  
Christopher G. Neville ◽  
Judith F. Baumhauer ◽  
Jeff Houck

Category: Other Introduction/Purpose: Patients with foot and ankle conditions have been shown to demonstrate improvement in their generic outcomes using the Patient Reported Outcome Measurement Information System (PROMIS). However, the responsiveness to change and the impact change may have on quality of life has not been explored following non-operative care with physical therapy. The effect size (ES) is an assessment of the magnitude of change while the impact of change in physical function can be assed with quality of life utility scores. Therefore, the purpose of this analysis was to investigate the responsiveness of the PROMIS physical function (PF) scale on changes in quality of life. Methods: The PROMIS PF scale was available at the start and end of physical therapy treatment for 352 patients with foot and ankle ICD10 codes. PF was chosen as a good outcome measure to assess overall outcome from physical therapy care. Changes from baseline to post-care were examine using Cohen’s d to remove dependence on sample size and was interpreted as d=0.20 as a small effect, d=0.05 as a medium effect, and d=0.80 as a large effect. Using available isotonic regression with linear interpolation functions, health state utility scores were calculated from the PROMIS PF scores. These scores represent a health state between 0, representing ‘being dead’, and 1 being the utility of ‘full health’. This methodology has been shown to be reliable and valid for assessing overall health quality of life from changes in physical function. Repeated measures ANOVA models were used to compare outcomes across time. Results: A significant improvement (p<0.01) in PF scores was seen across the sample following physical therapy (PF t-score; baseline 38.6+-8.8; follow-up 45+-9.1). This change was associated with a moderate to large ES of 0.75. The average ES for those subjects with a starting t-score less than 45 (n=294) was 0.86 (large effect) while for those with a starting t-score of greater than 45 (n=58) was 0.27 (small effect). There was also a significant (p<0.01) improvement in utility scores following physical therapy (utility score; baseline 0.58+-0.2; follow-up 0.72+-0.2). Conclusion: There is a general improvement in reported physical function following physical therapy but the magnitude of this effect depends on baseline function. Lower function is associated with greater changes. Improvement in physical function was associated with an overall improvement in quality of life. The non-linear nature of utility scores suggests some patients may have large increases in quality of life with small changes in physical function.


2013 ◽  
Vol 39 (5) ◽  
pp. 532-538 ◽  
Author(s):  
Mariana Rodrigues Gazzotti ◽  
Oliver Augusto Nascimento ◽  
Federico Montealegre ◽  
James Fish ◽  
Jose Roberto Jardim

OBJECTIVE: To evaluate the impact of asthma on activities of daily living and on health status in patients with controlled, partially controlled, or uncontrolled asthma in Brazil. METHODS: We used data related to 400 patients in four Brazilian cities (São Paulo, Rio de Janeiro, Salvador, and Curitiba), obtained in a survey conducted throughout Latin America in 2011. All study subjects were > 12 years of age and completed a standardized questionnaire in face-to-face interviews. The questions addressed asthma control, hospitalizations, emergency room visits, and school/work absenteeism, as well as the impact of asthma on the quality of life, sleep, and leisure. The level of asthma control was determined in accordance with the Global Initiative for Asthma criteria. RESULTS: Among the 400 respondents, asthma was controlled in 37 (9.3%), partially controlled in 226 (56.5%), and uncontrolled in 137 (34.2%). The numbers of patients with uncontrolled or partially controlled asthma who visited the emergency room, who were hospitalized, and who missed school/work were higher than were those of patients with controlled asthma (p = 0.001, p = 0.05, and p = 0.01, respectively). Among those with uncontrolled asthma, the impact of the disease on activities of daily living, sleep, social activities, and normal physical exertion was greater than it was among those with controlled or partially controlled asthma (p < 0.001). CONCLUSIONS: In Brazil, asthma treatment should be monitored more closely in order to increase treatment adherence and, consequently, the level of asthma control, which can improve patient quality of life and minimize the negative impact of the disease.


2017 ◽  
Vol 13 (7S_Part_10) ◽  
pp. P540-P540
Author(s):  
Hanne Marie Rostad ◽  
Martine Puts ◽  
Milada Cvancarova Småstuen ◽  
Inger Utne ◽  
Ellen Karine Grov ◽  
...  

Stroke is a major cause of death and disability worldwide. Cognitive impairment is commonly seen after stroke and might significantly affect the functional outcome. The study aimed to investigate the impact of cognitive impairment after stroke on quality of life and daily life activities. This was a cross-sectional study involving 38 post stroke patients, consisted of 23 males (60.5%) and 15 females (39.5%). All patients underwent neuropsychology examination and assessment of quality of life and activity daily living. The proportion of post-stroke cognitive impairment was 44.7%. Cognitive impairment after stroke affects several domains, including attention, memory, executive function and visuospatial. Cognitive impairment was significantly associated with worse performance in daily life activities


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