scholarly journals Quality of Life in Patients with Vestibular Schwannomas Following Gross Total or Less than Gross Total Microsurgical Resection: Should We be Taking the Entire Tumor Out?

Neurosurgery ◽  
2017 ◽  
Vol 82 (4) ◽  
pp. 541-547 ◽  
Author(s):  
Michael J Link ◽  
Morten Lund-Johansen ◽  
Christine M Lohse ◽  
Colin L W Driscoll ◽  
Ehrling Myrseth ◽  
...  

Abstract BACKGROUND The goal of microsurgical removal of a vestibular schwannoma is to completely remove the tumor, to provide long-term durable cure. In many cases, less than gross total resection (GTR) is performed to preserve neurological, and especially facial nerve function. OBJECTIVE To analyze long-term quality of life (QoL) in a cohort of patients who received either GTR or less than GTR. METHODS Patients operated for vestibular schwannoma less than 3.0 cm in posterior fossa diameter at 1 of 2 international tertiary care centers were surveyed using generic and disease-specific QoL instruments. RESULTS A total of 143 patients were analyzed. GTR was performed in 122, and 21 underwent less than GTR. QoL was assessed at a mean of 7.7 yr after surgery (interquartile range: 5.7-9.6). Patients who underwent GTR had smaller tumors; otherwise, there were no baseline differences between groups. Patients who underwent GTR, after multivariable adjustment for baseline features and facial nerve and hearing outcomes, reported statistically significantly better Short Form Health Survey-36 (SF-36) physical and mental scores, Patient-Reported Outcomes Measurement Information System (PROMIS-10) physical and mental scores, and Penn Acoustic Neuroma Quality of Life (PANQOL) facial, energy, general health, and total scores compared to patients receiving less than GTR. CONCLUSION GTR is associated with better QoL using the general QoL measures SF-36 and PROMIS-10 and the disease-specific PANQOL, even after controlling for baseline and outcome differences. This is especially significant in the assessment of mental health, indicating there may indeed be a psychological advantage to the patient that translates to overall well-being to have the entire tumor removed if microsurgical resection is undertaken.

Neurology ◽  
2018 ◽  
Vol 90 (23) ◽  
pp. e2034-e2041 ◽  
Author(s):  
Kelly G. Gwathmey ◽  
Reza Sadjadi ◽  
William B. Horton ◽  
Mark R. Conaway ◽  
Carolina Barnett-Tapia ◽  
...  

ObjectiveWe studied the performance of a 15-item, health-related quality-of-life polyneuropathy scale in the clinic setting in patients with diabetic distal sensorimotor polyneuropathy (DSPN).MethodsPatients with DSPN from 11 academic sites completed a total of 231 Chronic Acquired Polyneuropathy Patient-Reported Index (CAPPRI) scales during their clinic visits. Conventional and modern psychometric analyses were performed on the completed forms.ResultsConventional and modern analyses generally indicated excellent psychometric properties of the CAPPRI in patients with DSPN. For example, the CAPPRI demonstrated unidimensionality and performed like an interval-level scale.ConclusionAttributes of the CAPPRI for DSPN include ease of use and interpretation; unidimensionality, allowing scores to be summed; adequate coverage of disease severity; and the scale's ability to address relevant life domains. Furthermore, the CAPPRI is free and in the public domain. The CAPPRI may assist the clinician and patient with DSPN in estimating disease-specific quality of life, especially in terms of pain, sleep, psychological well-being, and everyday function. The CAPPRI may be most useful in the everyday clinical setting but merits further study in this setting, as well as the clinical trial setting.


2015 ◽  
Vol 122 (4) ◽  
pp. 833-842 ◽  
Author(s):  
Matthew L. Carlson ◽  
Oystein Vesterli Tveiten ◽  
Colin L. Driscoll ◽  
Frederik K. Goplen ◽  
Brian A. Neff ◽  
...  

OBJECT The optimal treatment for sporadic vestibular schwannoma (VS) is highly controversial. To date, the majority of studies comparing treatment modalities have focused on a narrow scope of technical outcomes including facial function, hearing status, and tumor control. Very few publications have investigated health-related quality of life (HRQOL) differences between individual treatment groups, and none have used a disease-specific HRQOL instrument. METHODS All patients with sporadic small- to medium-sized VSs who underwent primary microsurgery, stereotactic radiosurgery (SRS), or observation between 1998 and 2008 were identified. Subjects were surveyed via postal questionnaire using the 36-Item Short Form Health Survey (SF-36), the 10-item Patient-Reported Outcomes Measurement Information System short form (PROMIS-10), the Glasgow Benefit Inventory (GBI), and the Penn Acoustic Neuroma Quality-of-Life (PANQOL) scale. Additionally, a pool of general population adults was surveyed, providing a nontumor control group for comparison. RESULTS A total of 642 respondents were analyzed. The overall response rate for patients with VS was 79%, and the mean time interval between treatment and survey was 7.7 years. Using multivariate regression, there were no statistically significant differences between management groups with respect to the PROMIS-10 physical or mental health dimensions, the SF-36 Physical or Mental Component Summary scores, or the PANQOL general, anxiety, hearing, or energy subdomains. Patients who underwent SRS or observation reported a better total PANQOL score and higher PANQOL facial, balance, and pain subdomain scores than the microsurgical cohort (p < 0.02). The differences in scores between the nontumor control group and patients with VS were greater than differences observed between individual treatment groups for the majority of measures. CONCLUSIONS The differences in HRQOL outcomes following SRS, observation, and microsurgery for VS are small. Notably, the diagnosis of VS rather than treatment strategy most significantly impacts quality of life. Understanding that a large number of VSs do not grow following discovery, and that intervention does not confer a long-term HRQOL advantage, small- and medium-sized VS should be initially observed, while intervention should be reserved for patients with unequivocal tumor growth or intractable symptoms that are amenable to treatment. Future studies assessing HRQOL in VS patients should prioritize use of validated disease-specific measures, such as the PANQOL, given the significant limitations of generic instruments in distinguishing between treatment groups and tumor versus nontumor subjects.


Blood ◽  
2019 ◽  
Vol 134 (Supplement_1) ◽  
pp. 2180-2180
Author(s):  
Robert J Klaassen ◽  
Julia Y. Kinahan ◽  
Johann M. I. Graham ◽  
Yamilée V. Hébert ◽  
Katie O'Hearn

Introduction: Patient reported outcome measures (PROMs) are questionnaires completed by patients or caregivers without interpretation by healthcare professionals. As such, they allow patient concerns about a variety of healthcare issues to be identified and addressed in an efficient and actionable manner. PROMs can be generic, with questions relevant to multiple disease groups or disease-specific, with questions targeting the symptoms, limitations, and feelings common to the disease group. This systematic review identified generic and disease-specific PROMs for monitoring symptoms and health-related quality of life (HRQoL) in 4 pediatric non-malignant hematologic disease groups: thalassemia, hemophilia, immune thrombocytopenia (ITP), and sickle cell disease (SCD). Methods: Databases (MEDLINE, Embase, HaPI, CINAHL, and PsycTESTS) were searched to identify publications that either validated or used PROMs as an outcome measure in the four disease groups. Articles were excluded when <30% of the population was pediatric (<18 years), when the study setting was inpatient, when the tool had not been validated, or when the article did not report the use of a PROM for monitoring symptoms or HRQoL. Notably, hemophilia records published prior to 2016 were not screened as a systematic review by Limperg et al. (2017) identified validated PROMs in the pediatric hemophilia population and was used to include relevant articles. Results: The search identified 1176 unique records, with 902 records remaining for title and abstract screening after removal of 274 hemophilia articles published prior to the systematic review. Including hemophilia records identified from the 2017 review, 217 articles met inclusion criteria incorporating 107 generic and 20 disease-specific PROMs. Of the generic tools, the most frequent categories identified include psychological well-being (26 tools), general quality of life (19 tools), and family impact (19 tools). The most frequently used tool was the PedsQL 4.0 Generic Core Scales (66 studies), appearing 33 times in SCD, 25 times in thalassemia, 5 times in ITP, and 3 times in hemophilia. Other commonly used generic tools include the Short Form Health Survey, Child Health Questionnaire, PROMIS Health Measures, and Child Behaviour Checklist (Table). Disease-specific tools identified in the review include the PedsQL SCD Module, Kids ITP Tool, Haemo-QoL, CHO-KLAT, and TranQol (Table). In addition, 10 studies reported on pain diaries and 9 of these studies were SCD focused, the other being hemophilia focused. Conclusion: This systematic review identified several generic and disease-specific PROMs that have been used in pediatric non-malignant hematology. Although generic tools have been used more frequently, many disease-specific tools have been validated and are available for use in the clinical environment. We are currently conducting focus groups with patients, parents, and clinicians to determine the optimal choice of tools for monitoring symptoms and HRQoL in the pediatric non-malignant clinical environment. Disclosures No relevant conflicts of interest to declare.


2015 ◽  
Vol 33 (29_suppl) ◽  
pp. 93-93 ◽  
Author(s):  
Kristine A. Donovan ◽  
Alexandra Albizu-Rivera ◽  
Hye Sook Chon ◽  
Robert Michael Wenham

93 Background: Pelvic exenteration (PE) has been performed historically in women with gynecologic cancer for palliation of recurrent disease. With advances in operative methods, PE in the well-selected patient can produce 5-year survival rates as high as 60%. Despite a recent increase in rate of PE performed with curative intent, there is a paucity of data on its long-term physical and emotional effects. We sought to characterize women’s long-term quality of life (QOL) and its correlates after PE for recurrent gynecologic cancer. Methods: We conducted a mixed methods study combining quantitative measurement of QOL and its demographic, clinical and psychological correlates with concurrent qualitative assessment to probe women’s cognitive and behavioral responses to PE. Results: From 2005 to 2014, 85 women underwent PE at our institution; 44% were still alive at study initiation. Among eligible women, 72% completed their participation. Mean age of the sample at time of study participation was 57.3 (SD = 9.5) years (range = 43 to 75) and median time since surgery was 3.0 years (range = .9 to 8). Women’s self-reported global QOL score was average (54.4 (23); range = 33.3 to 100) and the relationship between QOL and current age or time since surgery was not significant (p > .05). Women reported mild sleep disturbance, mild to moderate pain, moderate fatigue and anxiety and severe depressive symptoms. All of the women exceeded the cut-off for clinically significant depressive symptoms. Qualitatively, women described profound negative changes in their physical and emotional well-being after PE. In nearly all of the women, the extended survival after PE helped to buffer the effects of these changes. Conclusions: Results suggest women’s health-related QOL may return to, or near, pre-surgical levels in long-term survivorship but that symptom control is suboptimal. Findings should facilitate more informed decision making prior to PE and suggest targets for clinical intervention to enhance QOL and improve symptom control after PE. This study highlights the need for more comprehensive assessments pre- and post-PE to examine the effects of disease- and PE-related variables, cultural norms and social support on patient-reported outcomes.


2019 ◽  
Vol 104 (7) ◽  
pp. 2748-2756 ◽  
Author(s):  
Gaia Tabacco ◽  
Yu-Kwang Donovan Tay ◽  
Natalie E Cusano ◽  
John Williams ◽  
Beatriz Omeragic ◽  
...  

Abstract Context Calcium and vitamin D treatment does not improve reduced quality of life (QOL) in hypoparathyroidism. Recombinant human (rh) PTH(1-84) therapy improves QOL metrics for up to 5 years. Data on QOL beyond this time point are not available. Objectives To evaluate the effects of 8 years of rhPTH(1-84) therapy on QOL and factors associated with long-term benefit. Design Prospective, open-label trial. Setting Referral center. Patients Twenty patients with hypoparathyoidism. Main Outcome Measures RAND 36-Item Short Form Health Survey (SF-36). Results rhPTH therapy led to substantial improvement in five of the eight SF-36 domains [vitality, social functioning (SF), mental health (MH), bodily pain (BP) and general health] and three of these domains (SF, MH, BP) were no longer lower than the reference population. The improvement in the mental component summary (MCS) score was sustained through 8 years, while the physical component summary (PCS) score improved through 6 years. A lower baseline QOL score was associated with greater improvement. A threshold value &lt;238 (MCS) and &lt;245 (PCS) predicted long-term improvement in 90% and 100% of the cohort, respectively. In patients whose calcium supplementation was reduced, MCS and PCS scores improved more than those whose supplementation did not decline to the same extent. Improvement in PCS was greater in patients whose calcitriol dosage was reduced and duration of disease was shorter. Conclusions rhPTH(1-84) improves long-term well-being in hypoparathyroidism. The improvements are most prominent in those with impaired SF-36 at baseline and those whose requirements for conventional therapy decreased substantially.


2019 ◽  
Vol 24 (03) ◽  
pp. 264-269
Author(s):  
Ching Man Yeung ◽  
Alexander Kai Yiu Choi ◽  
Jennifer Wing Sze Tong ◽  
Winnie Fok ◽  
Yat Fai Chan ◽  
...  

Background: Thumb polydactyly is one of the commonest congenital hand differences. Traditional surgeon-based outcome scores capture outcomes mainly on bodily structure and function. Outcomes on the long-term well-being of the patients in the domains of activity and participation are not fully studied. Methods: Forty-eight thumbs in forty-five Chinese patients with radial polydactyly underwent surgical treatment at or before 3 years old were recruited. Mean follow-up was 11.6 years. Surgical outcomes were collected and compared to the normal opposite thumb. The results were compiled into the Japanese Society for Surgery of the Hand (JSSH) score, Cheng score and Tada score. Patients’ activity involving hands were assessed by both objective tools and patient-reported outcome measure while their health-related quality of life (HRQoL) was assessed by Patient- and Parent-reported Pediatric Quality of Life Inventory (PedsQL). Correlations between outcomes were analysed. Results: Overall, both parents and patients themselves reported good quality of life with mean score of 86.6% and 92.1% respectively in PedsQL. The combined surgical scores ranged from 52% good or excellent results using JSSH score to 100% good result using Cheng score. None of the outcomes on bodily structure and function showed positive correlation with patient’s well-being. Negative correlation was noted in total passive range of movement, active movement and Cheng score. All patients reported no activity restriction. Writing test did not show significant slowing. The operated hands had significantly poorer fine motor dexterity than normal. No significant correlation is noted between activity outcomes and PedsQL. Conclusions: Outcomes on bodily structure, function and activity showed little correlation with patients’ well-being after thumb polydactyly correction. It should be careful in using or analysing patient/parent-reported outcome measures on HRQoL as outcome assessment of surgical treatment of radial polydactyly.


2019 ◽  
Vol 26 (1) ◽  
pp. 87-92 ◽  
Author(s):  
Daiva Gražulytė ◽  
Evaldas Kazlauskas ◽  
Ieva Norkienė ◽  
Smiltė Kolevinskaitė ◽  
Greta Kezytė ◽  
...  

Background. Heart surgery is a major stressful event that can have a significant negative effect on patients’ quality of life (QoL) and may cause long-term posttraumatic stress reactions. The aim of this pilot study was to estimate the longitudinal change and predictors of health-related quality of life (HRQOL) dynamics and identify factors associated with PTS at 5-year follow-up (T2) after elective cardiac surgery and associations with pre-surgery (T1) QoL. Materials and methods. Single-centre prospective study was conducted after Regional Bioethics Committee approval. Adult consecutive patients undergoing elective cardiac surgery were included. HRQOL was measured using the Medical Outcomes Study 36-Item Short-Form Health Survey (SF-36) questionnaire before (T1) and 5-years after (T2) cardiac surgery. Posttraumatic stress was assessed using the International Trauma Questionnaire. Results. The pilot study revealed a significant positive change at 5-year follow-up in several domains of SF-36: physical functioning (PF), energy/fatigue (E/F), and social functioning (SF). Prolonged postoperative hospital stay was associated with change in SF (p < 0.01), E/F (p < 0.05) and emotional well-being (p < 0.05). The percentage of patients that had the posttraumatic stress disor. der (PTSD) at T2 was 12.2%. Posttraumatic stress symptoms were associated with longer hospitalization after surgery (p < 0.01). Conclusions. HRQOL improved from baseline to five years postoperatively. Patients with lower preoperative HRQOL scores tended to have a more significant improvement of HRQOL five years after surgery. A prolonged postoperative hospital stay had a negative impact on postoperative social functioning, energy/fatigue, and emotional well-being. Increased levels of PTSD were found in cardiac surgery patients following five years after the surgery.


2018 ◽  
Vol 45 (6) ◽  
pp. 760-765 ◽  
Author(s):  
Cheryl Barnabe ◽  
Louise Crane ◽  
Tyler White ◽  
Brenda Hemmelgarn ◽  
Gilaad G. Kaplan ◽  
...  

Objective.To characterize patient-reported outcomes, resource use, and social participation during the course of biologic therapy for indigenous and non-indigenous patients with rheumatoid arthritis (RA).Methods.Patients initiating biologic therapy (2004 to 2012) were characterized longitudinally for patient-reported outcomes including physical function measured by the Health Assessment Questionnaire, EQ-5D, well-being [Medical Outcomes Study Short Form-36 (SF-36)], and visual analog scales for pain, fatigue, sleep, stiffness, and patient’s global assessment. Resource use, participation in activities of daily living, and effect of RA on work productivity were also evaluated for change during therapy.Results.Indigenous patients (n = 90) presented with significantly worse scores for global evaluation, pain, sleep, quality of life, well-being, and physical function compared to non-indigenous patients (n = 1400). All patient-reported outcomes improved significantly during treatment for patients in both groups, but pain, sleep, and SF-36 physical health score changes occurred at slower rates for indigenous patients [difference in slopes 0.09 (p = 0.029), 0.08 (p = 0.043), and −0.35 (p = 0.03), respectively]. Performance of daily activities was affected for 50% of indigenous compared to 37% of non-indigenous patients, with more use of community services and assistance from others. Employed indigenous patients reported twice the number of days being unable to work owing to RA compared to employed non-indigenous patients. Of the unemployed indigenous patients, 82% indicated they had stopped working because of arthritis, versus 48% of non-indigenous patients (p < 0.0001).Conclusions.Indigenous patients have greater consequences of RA regarding experienced symptoms, health-related quality of life, disruption of performance of activities of daily living, and reduced employment participation.


2020 ◽  
Vol 48 (6) ◽  
pp. E4
Author(s):  
Michael D. Cusimano ◽  
Tony Q. Huang ◽  
Anthony Marchie ◽  
Harley S. Smyth ◽  
Kalman Kovacs

OBJECTIVECushing’s disease (CD) patients experience a range of debilitating symptoms that impair quality of life (QOL) as assessed using generic measures. These generic measures are inadequate to capture the disease-specific burden of illness. The development of the CD-specific QOL-CD measure of QOL using items generated by CD patients and healthcare professionals will provide a holistic assessment of patient outcomes and efficacy of novel therapies.METHODSA total of 96 CD patients participated. A list of 177 items (version 1.0) was generated by treated CD patients (n = 9), caregivers (n = 2), healthcare providers (n = 7), and results of a MEDLINE search. Item reduction was performed through content analysis and dual scaling. Patients’ rating of importance was incorporated to reduce to a final version of 56 items (version 3.0). Evidence for test-retest reliability was sought through administering the QOL-CD 1 week apart and Cronbach’s α of each subscale. Construct validity was assessed through extreme group analysis and comparison with the normal Canadian population. Concurrent validity was sought through comparison with the SF-36, Functional Assessment of Cancer Therapy–Brain (FACT-Br), and Karnofsky Performance Status (KPS). Perioperative testing was conducted on CD patients (n = 25) against nonfunctioning pituitary adenoma controls (n = 25) through pre- and postoperative testing.RESULTSA total of 96 CD patients (86 females and 10 males; mean age 45.23 ± 14.16 years) participated. The QOL-CD was feasible (mean completion time 15 minutes, with 70% believing accurate capture of QOL), reliable (CD 1 week apart: r = 0.86; control 1 week apart: r = 0.83; Cronbach’s α: general health = 0.73, emotional health = 0.85, physical health = 0.78, mental status = 0.82, social well-being = 0.63, medical treatment = 0.54), and valid (extreme group testing p < 0.001; SF-36 and QOL-CD general health: r = 0.56, social well-being: r = 0.21, emotional health: r = 0.61, total score: r = 0.58; FACT-Br and QOL-CD physical health: r = 0.47, social well-being: r = 0.21, emotional health: r = 0.34, total score: r = 0.68; KPS and QOL-CD general health: r = 0.32, total score: r = 0.14). Perioperative testing of CD patients (n = 25) demonstrated improvement in all subscales postoperatively, with a significant difference in emotional health (p < 0.001) and physical health (p < 0.001).CONCLUSIONSThe QOL-CD questionnaire has been developed for patients with CD and has demonstrated evidence for validity and reliability.


2006 ◽  
Vol 45 (02) ◽  
pp. 211-215 ◽  
Author(s):  
V. Vondra ◽  
M. Malý

Summary Objectives: Chronic respiratory diseases may alter a patient’s social life and well-being. Measures of health-related quality of life have been proven to bring complementary information to functional assessments. The aim of the study was to describe the questionnaires that are most frequently used to measure this subjective construct in patients with chronic obstructive pulmonary disease (COPD) and to compare the responses obtained via administering one generic (SF-36) and one disease-specific questionnaire (St. George’s Respiratory Questionnaire; SGRQ) to patients with COPD. Methods: One group of patients (46 individuals) was used to evaluate the questionnaire’s performance in repeated administrations under unchanged conditions (reproducibility) and to study the correlations of corresponding domains of respective questionnaires. Responsiveness of both questionnaires was tested on another group of 129 patients measured before and after the therapeutic stay at the spa. Methods of cor-relational analysis (Spearman, intraclass, and canonical correlation coefficients) as well as the Wilcoxon rank test were used for statistical analysis. Results: Both questionnaires seem to be comprehensive outcome measures for patients with COPD, but some particular areas may not be covered with the same intensity (e.g. emotional problems). Reproducibility of both questionnaires was good and only small non-significant shifts were seen, particularly in physical and social functioning domains. In repeated measurement, the SGRQ seemed to be slightly more responsive to change than the SF-36. Conclusions: The idea of using generic and disease-specific questionnaires together probably represents the best approach to this topic. It may improve our knowledge and explain better the relationship between disease-specific changes in patient status and both disease-specific treatment and general functional status.


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