scholarly journals Children and Adults Tai Chi Study (CF-CATS2): a randomised controlled feasibility study comparing internet-delivered with face-to-face Tai Chi lessons in cystic fibrosis

2018 ◽  
Vol 4 (4) ◽  
pp. 00042-2018 ◽  
Author(s):  
Siobhán B. Carr ◽  
Patricia Ronan ◽  
Ava Lorenc ◽  
Awais Mian ◽  
Susan L. Madge ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cystic Fibrosis ◽  
Health Status ◽  
Tai Chi ◽  
Practice Research ◽  
The Internet ◽  
Night Time ◽  
Face To Face ◽  
Patient Reported

Virtual healthcare is fast entering medical practice. Research into the feasibility of using it to teach treatment regimens such as exercise has not been explored. Maintaining an exercise regime can be difficult in cystic fibrosis: group classes risk potential infection, yet motivation is hard to maintain when alone. Tai Chi is a low-impact exercise and involves gentle, demanding movements. This study aimed to assess the feasibility, safety and acceptability of learning Tai Chi via an internet-based approach and compared patient-reported outcomes.Children and adults with cystic fibrosis were recruited to a randomised, comparative effectiveness trial. Participants learnt eight Tai Chi movements; teaching was delivered in eight lessons over 3 months: delivered either via the internet or face-to-face. Assessments were at 3-monthly intervals over 9 months. Outcomes included health status, quality of life, sleep, mindfulness and instructor-led questions.40 adults and children completed the eight sets of Tai Chi lessons. The median age was 22.8 years (range 6.1–51.5 years); 27 patients were female. The cohort comprised 26 adults (aged >16 years), six teenagers and eight children (aged <12 years). The groups were well matched. Feasibility and safety were demonstrated. Participants showed significant improvements in self-reported sleep, cough (both daytime and night-time), stomach ache and breathing. No differences in lung function, health status, quality of life, sleep or mindfulness was shown before or after completing the lessons.Tai Chi was safe and well tolerated; it was feasible to deliver individual lessons via the internet, reducing concerns regarding cross-infection, and appeared to improve self-reported symptoms.

scholarly journals BOMET-QoL-10 questionnaire for breast cancer patients with bone metastasis: the prospective MABOMET GEICAM study

2019 ◽  
Vol 3 (1) ◽  
Author(s):  
A. Barnadas ◽  
◽  
M. Muñoz ◽  
M. Margelí ◽  
J. I. Chacón ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Quality Of Life ◽  
Health Status ◽  
Bone Metastasis ◽  
Assessment Tool ◽  
Metastatic Breast ◽  
Perceived Health ◽  
Perceived Health Status ◽  
Patient Reported

Abstract Background Bone metastasis (BM) is the most common site of disease in metastatic breast cancer (MBC) patients. BM impacts health-related quality of life (HRQoL). We tested prospectively the psychometric properties of the Bone Metastasis Quality of Life (BOMET-QoL-10) measure on MBC patients with BM. Methods Patients completed the BOMET-QoL-10 questionnaire, the Visual Analogue Scale (VAS) for pain, and a self-perceived health status item at baseline and at follow-up visits. We performed psychometric tests and calculated the effect size of specific BM treatment on patients´ HRQoL. Results Almost 70% of the 172 patients reported symptoms, 23.3% experienced irruptive pain, and over half were receiving chemotherapy. BOMET-QoL-10 proved to be a quick assessment tool performing well in readability and completion time (about 10 min) with 0–1.2% of missing/invalid data. Although BOMET-QoL-10 scores remained fairly stable during study visits, differences were observed for patient subgroups (e.g., with or without skeletal-related events or adverse effects). Scores were significantly correlated with physician-reported patient status, patient-reported pain, symptoms, and perceived health status. BOMET-QoL-10 scores also varied prospectively according to changes in pain intensity. Conclusions BOMET-QoL-10 performed well as a brief, easy-to-administer, useful, and sensitive HRQoL measure for potential use for clinical practice with MBC patients. Trial registration NCT03847220. Retrospectively registered on clinicaltrials.gov (February the 20th 2019).

Abstract 13633: Predictors of Mental and Physical Health Outcomes of Patients Undergoing an Appointment-based Cardiac Rehabilitation Program

Circulation ◽  
2020 ◽  
Vol 142 (Suppl_3) ◽  
Author(s):  
Catherine Xie ◽  
Sean Fournier ◽  
Susan Hiller ◽  
Joyce Oen Hsiao ◽  
Rachel P Dreyer
Keyword(s):  
Quality Of Life ◽  
Health Status ◽  
Cardiac Rehabilitation ◽  
General Health ◽  
Health Related Quality ◽  
Sf 36 ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related

Introduction: Cardiac rehabilitation (CR) is an evidence-based program to improve secondary prevention outcomes for patients with cardiovascular disease (CVD). Lower health-related quality of life is a known risk factor for worse CVD outcomes. We examined the effects of a patient-driven appointment-based CR program on health-related quality of life. Methods: We utilized data from the Yale New-Haven Health (YNHH) CR program over a 6-year period (2012-2017). Data was collected on patient demographics, clinical characteristics and socioeconomic status. The Medical Outcome Short-Form General Health Survey (SF-36) was used to measure general health status. We evaluated SF-36 score changes pre and post CR with paired T-tests and conducted logistic regression analysis to examine predictors of improvements in health-related quality of life. Results: Over the 6-year study period, a total of 2,135 patients (27.9% women, mean age 65±12 years) were enrolled in the CR program. Patients demonstrated significant improvements in both the SF-36 physical, mental and health transition components (P<0.001) (Table) . In particular, patients had significant improvement in the social functioning domain (measures limitations patients see in their ability to participate in social activities due to physical/emotional issues), with an increase of 23.3 points out of 100. Physician-reported patient stress and/or depression on intake medical exam were significant negative predictors for improvement in the total SF-36 score (OR 0.23, 95% CI 0.08-0.80, P=0.021), with the effect driven largely by its impact on the physical component of SF-36 (OR 0.27, 95% CI 0.09-0.83, P=0.022). Conclusion: We demonstrated that a novel appointment-based CR program produced improvements in patient-reported health-related quality of life. Appointment-based CR could be a viable alternative for patients who prefer more scheduling flexibility, to optimize health status improvement and CVD outcomes.

scholarly journals A systematic review of patient-reported outcome measures (PROMs) in cystic fibrosis

BMJ Open ◽  
2020 ◽  
Vol 10 (10) ◽  
pp. e033867
Author(s):  
Irushi Ratnayake ◽  
Susannah Ahern ◽  
Rasa Ruseckaite
Keyword(s):  
Quality Of Life ◽  
Cystic Fibrosis ◽  
Outcome Measures ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Cochrane Library ◽  
Life Questionnaire ◽  
Health Measurement ◽  
Patient Reported

BackgroundTo determine patient-reported outcome measures (PROMs) which may be suitable for incorporation into the Australian Cystic Fibrosis Data Registry (ACFDR) by identifying PROMs administered in adult and paediatric cystic fibrosis (CF) populations in the last decade.MethodsWe searched MEDLINE, EMBASE, Scopus, CINAHL, PsycINFO and Cochrane Library databases for studies published between January 2009 and February 2019 describing the use of PROMs to measure health-related quality of life (HRQoL) in adult and paediatric patients with CF. Validation studies, observational studies and qualitative studies were included. The search was conducted on 13 February 2019. The COnsensus-based Standards for the selection of health Measurement INstruments Risk of Bias Checklist was used to assess the methodological quality of included studies.ResultsTwenty-seven different PROMs were identified. The most commonly used PROMs were designed specifically for CF. Equal numbers of studies were conducted on adult (32%, n=31), paediatric (35%, n=34) and both (27%, n=26) populations. No PROMs were used within a clinical registry setting previously. The two most widely used PROMs, the Cystic Fibrosis Questionnaire—Revised (CFQ-R) and the Cystic Fibrosis Quality of Life Questionnaire (CFQoL), demonstrated good psychometric properties and acceptability in English-speaking populations.DiscussionWe found that although PROMs are widely used in CF, there is a lack of reporting on the efficacy of methods and timepoints of administration. We identified the CFQ-R and CFQoL as the most suitable for incorporation in the ACFDR as they captured significant effects of CF on HRQoL and were reliable and valid in CF populations. These PROMs will be used in a further qualitative study assessing patients’ with CF and clinicians’ perspectives toward the acceptability and feasibility of incorporating a PROM in the ACFDR.PROSPERO registration numberCRD42019126931.

Follow-up of tetralogy of Fallot patients: tertiary centre versus satellite clinic

2011 ◽  
Vol 21 (4) ◽  
pp. 444-453 ◽  
Author(s):  
Camille L. Hancock Friesen ◽  
Mark Robertson ◽  
David Liu ◽  
Haley Burton ◽  
Katherine Fleming ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Health Status ◽  
Tetralogy Of Fallot ◽  
Health Centre ◽  
Subjective Health ◽  
Subjective Health Status ◽  
Sf 36 ◽  
Patient Reported

AbstractBackgroundCanadian Cardiovascular Society consensus guidelines recommend that tetralogy of Fallot patients be seen by a congenital cardiologist every 2 years. In Atlantic Canada, tetralogy of Fallot patients are followed up at either tertiary or satellite clinics, which are held in the community and attended by paediatric cardiologists. The effectiveness of satellite clinics in congenital cardiac disease follow-up is unproven. Our objective was to compare patient-reported quality of life measures to determine whether these were impacted by the site of follow-up.MethodsWe included patients with tetralogy of Fallot undergoing surgical repair at the Izaak Walton Killam Health Centre from 1 November, 1972 to 31 May, 2002. Quality of life surveys, SF-10 or SF-36v2, were administered to consenting patients. We analysed the subjective health status by patient age and site of follow-up.ResultsOf the 184 eligible patients, 72 were lost to follow-up. Of the locatable patients, 61% completed the questionnaires. In all, 90% (101 out of 112) were followed up at recommended intervals. Of the 112 (68%) patients, 76 were followed up at a tertiary clinic. These patients were older, with a mean age of 18.4 years versus 14.7 years, and scored higher on the SF-36 physical component summary (52.6 versus 45.7, p = 0.02) compared with satellite clinic patients. The SF-36 mental component summary scores were similar for patients regardless of the site of follow-up. SF-10 physical and psychosocial scores were similar regardless of the site of follow-up.ConclusionTetralogy of Fallot patients followed at either satellite or tertiary clinics have similar subjective health status.

scholarly journals Predictors of sinonasal quality of life and nasal morbidity after fully endoscopic transsphenoidal surgery

2015 ◽  
Vol 122 (6) ◽  
pp. 1458-1465 ◽  
Author(s):  
Andrew S. Little ◽  
Daniel Kelly ◽  
John Milligan ◽  
Chester Griffiths ◽  
Daniel M. Prevedello ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Clinical Trial ◽  
Health Status ◽  
Transsphenoidal Surgery ◽  
Pituitary Surgery ◽  
Nasal Packing ◽  
Nasal Endoscopy ◽  
Endoscopic Transsphenoidal Surgery ◽  
Patient Reported

OBJECT Despite the increasing application of endoscopic transsphenoidal surgery for pituitary lesions, the prognostic factors that are associated with sinonasal quality of life (QOL) and nasal morbidity are not well understood. The authors examine the predictors of sinonasal QOL and nasal morbidity in patients undergoing fully endoscopic transsphenoidal surgery. METHODS An exploratory post hoc analysis was conducted of patients who underwent endoscopic pituitary surgery and were enrolled in a prospective multicenter QOL study. End points of the study included patient-reported sinonasal QOL and objective nasal endoscopy findings. Multivariate models were developed to determine the patient and surgical factors that correlated with QOL at 2 weeks through 6 months after surgery. RESULTS This study is a retrospective review of a subgroup of patients studied in the clinical trial “Rhinological Outcomes in Endonasal Pituitary Surgery” (clinical trial no. NCT01504399, clinicaltrials.gov). Data from 100 patients who underwent fully endoscopic transsphenoidal surgery were included. Predictors of a lower postoperative sinonasal QOL at 2 weeks were use of nasal splints (p = 0.039) and female sex at the trend level (p = 0.061); at 3 months, predictors of lower QOL were the presence of sinusitis (p = 0.025), advancing age (p = 0.044), and use of absorbable nasal packing (p = 0.014). Health status (multidimensional QOL) was also predictive at 2 weeks (p = 0.001) and 3 months (p < 0.001) and was the only significant predictor of sinonasal QOL at 6 months (p < 0.001). A Kaplan-Meier analysis was performed to study time to resolution of nasal crusting, mucopurulence, and synechia as observed during nasal endoscopy after surgery. The mean time (± SEM) to absence of nasal crusting was 16.3 ± 2.1 weeks, mucopurulence was 6.2 ± 1.1 weeks, and synechia was 4.4 ± 0.5 weeks. Use of absorbable nasal packing was associated with more severe mucopurulence. CONCLUSIONS Sinonasal QOL following endoscopic pituitary surgery reaches a nadir at 2 weeks and recovers by 3 months postoperatively. Use of absorbable packing and nasal splints, while used in a minority of patients, negatively correlates with early sinonasal QOL. Sinonasal QOL and overall health status are well correlated in the postoperative period, suggesting the important influence of sinonasal QOL on the patient experience.

scholarly journals Patient-reported Outcomes in Young Adults with Osteonecrosis Secondary to Developmental Dysplasia of the Hip

2020 ◽  
Author(s):  
Avi Marks ◽  
Mario Cortina-Borja ◽  
Dror Maor ◽  
Aresh Hashemi-Nejad ◽  
Andreas Roposch
Keyword(s):  
Quality Of Life ◽  
Health Status ◽  
Physical Function ◽  
Young Adulthood ◽  
Developmental Dysplasia ◽  
Maximum Score ◽  
Patient Reported ◽  
Hip Function ◽  
Dysplasia Of The Hip

Abstract Background: Osteonecrosis of the femoral head is a common complication in the treatment of developmental dysplasia of the hip (DDH). While functional outcomes of affected patients are good in childhood, it is not clear how they change during the transition to young adulthood. This study determined the relationship between osteonecrosis and hip function, physical function and health status in adolescents and young adults.Methods: We studied 181 patients with a mean age of 19.7 ± 3.8 years with and without osteonecrosis following an open or closed reduction (1995-2005). Patients completed patient-reported outcome measures in 2015/2016 to quantify hip function (maximum score 100); physical function (maximum score 100); and general health status (maximum score 1). We graded all radiographs for subtype of osteonecrosis (Bucholz-Ogden); acetabular dysplasia (centre-edge angle); subluxation (Shenton’s line); and osteoarthritis (Kellgren-Lawrence). Analyses were adjusted for the number of previous surgical procedures on the hip and for the severity of residual hip dysplasia.Results: In 149 patients (186 hips) with and without osteonecrosis, the mean differences (95% confidence interval) in hip function, physical function and quality of life were -4.7 (-10.26, 0.81), -1.03 (-9.29, 7.23) and 0.10 (-1.15, 1.18), respectively. Adjusted analyses stratified across types of osteonecrosis showed that only patients with Bucholz-Odgen grade III had reduced hip function (p<0.01) and physical function (p<0.05) but no difference in health-related quality of life when compared to no osteonecrosis. Conclusion: Osteonecrosis secondary to DDH is a relatively benign disorder in adolescents and young adulthood. Affected patients demonstrated minimal physical disability, a normal quality of life but reduced hip function.

Health-related quality of life/patient-reported outcomes in relapsed ovarian cancer: Results from a randomized phase III study of trabectedin with pegylated liposomal doxorubicin (PLD) versus PLD alone

2009 ◽  
Vol 27 (15_suppl) ◽  
pp. 5526-5526
Author(s):  
C. N. Krasner ◽  
A. Poveda ◽  
T. Herzog ◽  
J. Vermorken ◽  
B. Monk ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Ovarian Cancer ◽  
Health Status ◽  
Patient Reported Outcomes ◽  
Phase Iii ◽  
Gi Symptoms ◽  
Patient Reported ◽  
Phase Iii Study ◽  
The Impact

5526 Background: In an open-label, multicenter, randomized phase III study comparing the combination of trabectedin and PLD to PLD alone in patients with relapsed ovarian cancer, the combination demonstrated significantly improved progression free survival and response rates, manageable non-cumulative toxicity, and fewer PLD-associated adverse events. We studied the impact of the combination of trabectedin with PLD on the quality of life (QoL)/patient-reported outcomes (PRO) evaluated as part of the trial. Methods: QoL/PRO questionnaires, EORTC-QLQ C30, OV28, and EQ-5D were completed by patients at screening and on Day 1 of every other treatment cycle starting with Cycle 1, and at the end-of-treatment visit. Global health status/QoL, fatigue, rain subscales from QLQ C30, and abdominal pain/GI symptoms scale from OV28 were chosen a priori for primary analyses. Other scales of the three questionnaires were analyzed on a supportive basis. Results: A total of 672 patients were randomized. 663 (98%) completed at least the baseline questionnaires. Median cycles of treatment was 6 (131 days) for the combination arm and 5 (143 days) for the monotherapy arm. Mixed effects models (using a covariance structure of AR[1]) predicting the score at baseline and follow-up scores as a function of treatment, days after baseline, and interaction between treatment and days after baseline showed no significant differences between the treatment arms for any of the prespecified scales. Similar analyses of other scales, including EQ-5D Health Index scores and Health State on the Visual Analog Scale, support the findings. Conclusions: The addition of trabectedin to PLD results in superior efficacy in patients with relapsed ovarian cancer, with no added decrement to overall health status as assessed by PRO. [Table: see text]

Association of Quality of Life Measures and Otolaryngologic Care in Cystic Fibrosis Patients

2021 ◽  
pp. 000348942110456
Author(s):  
Stephen Leong ◽  
Rahul K. Sharma ◽  
Chetan Safi ◽  
Emily DiMango ◽  
Claire Keating ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cystic Fibrosis ◽  
Demographic Data ◽  
Critical Role ◽  
Sinus Surgery ◽  
Coordinated Care ◽  
Quality Of Life Measures ◽  
Patient Reported ◽  
Snot 22

Objectives: Appropriate management of chronic rhinosinusitis (CRS) among patients with cystic fibrosis (CF) is important in improving quality of life. Otolaryngologists play a critical role in reducing CRS symptom burden. This study seeks to evaluate the role of patient-reported quality-of-life measures in guiding interventions for CF-related sinus disease. Methods: We performed a prospective, cross-sectional study of 105 patients presenting to a CF-accredited clinic between July and September 2018. Demographic data and sinus surgery history were collected, in addition to Sino-Nasal Outcome Test (SNOT-22) and Questionnaire of Olfactory Disorders (QOD-NS) scores. Statistical analysis was conducted using correlation and non-parametric Mann-Whitney U tests. Results: Baseline well-care visits accounted for 71.4% of all clinical evaluations. Prior otolaryngology intervention was noted in 69 (66%) patients, where the majority of these patients (63/69; 91%) underwent endoscopic sinus surgery (ESS). Patients with a history of otolaryngology intervention had an average SNOT-22 score of 33.2 (SD = 20.6) compared to 24.9 (SD = 18.5) for patients without prior intervention ( P = .048). The average QOD-NS score was 5.5 (SD = 6.4) among patients referred to otolaryngologists and 3.1 (SD = 5.7) for non-referred patients ( P = .012). SNOT-22 and QOD-NS scores were modestly correlated ( R of .43). Conclusion: CF patients with symptoms resulting in worse quality-of-life assessments were more likely to have established coordinated care with an otolaryngologist. Further validation of the utility of SNOT-22 and QOD-NS questionnaires as care coordination metrics is necessary in the CF population.

scholarly journals Comparison of sinonasal quality of life and health status in patients undergoing microscopic and endoscopic transsphenoidal surgery for pituitary lesions: a prospective cohort study

2015 ◽  
Vol 123 (3) ◽  
pp. 799-807 ◽  
Author(s):  
Andrew S. Little ◽  
Daniel F. Kelly ◽  
John Milligan ◽  
Chester Griffiths ◽  
Daniel M. Prevedello ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cohort Study ◽  
Health Status ◽  
Surgical Technique ◽  
Endoscopic Surgery ◽  
Transsphenoidal Surgery ◽  
Endoscopic Transsphenoidal Surgery ◽  
Patient Reported ◽  
Reported Health

OBJECT Despite the widespread adoption of endoscopic transsphenoidal surgery for pituitary adenomas, the sinonasal quality of life (QOL) and health status in patients who have undergone this technique have not been compared with these findings in patients who have undergone the traditional direct uninostril microsurgical technique. In this study, the authors compared the sinonasal QOL and patient-reported health status after use of these 2 surgical techniques. METHODS The study design was a nonblinded prospective cohort study. Adult patients with sellar pathology and planned transsphenoidal surgery were screened at 4 pituitary centers in the US between October 2011 and August 2013. The primary end point of the study was postoperative patient-reported sinonasal QOL as measured by the Anterior Skull Base Nasal Inventory–12 (ASK Nasal-12). Supplementary end points included patient-reported health status estimated by the 8-Item Short Form Health Survey (SF-8) and EuroQol (EQ)-5D-5L instruments, and sinonasal complications. Patients were followed for 6 months after surgery. RESULTS A total of 301 patients were screened and 235 were enrolled in the study. Of these, 218 were analyzed (111 microsurgery patients, 107 endoscopic surgery patients). Demographic and tumor characteristics were similar between groups (p ≥ 0.12 for all comparisons). The most common complication in both groups was sinusitis (7% in the microsurgery group, 13% in the endoscopic surgery group; p = 0.15). Patients treated with the endoscopic technique were more likely to have postoperative nasal debridements (p < 0.001). The ASK Nasal-12 and SF-8 scores worsened substantially for both groups at 2 weeks after surgery, but then returned to baseline at 3 months. At 3 months after surgery, patients treated with endoscopy reported statistically better sinonasal QOL compared with patients treated using the microscopic technique (p = 0.02), but there were no significant differences at any of the other postoperative time points. CONCLUSIONS This is the first multicenter study to examine the effect of the transsphenoidal surgical technique on sinonasal QOL and health status. The study showed that surgical technique did not significantly impact these patient-reported measures when performed at high-volume centers. Clinical trial registration no.: NCT01504399 (clinicaltrials.gov).

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