Outcome after complex neurosurgery: the caregiver's burden is forgotten

1999 ◽  
Vol 7 (1) ◽  
pp. E1 ◽  
Author(s):  
Dorothy A. Lang ◽  
Glenn Neil-Dwyer ◽  
John Garfield
Keyword(s):  
Quality Of Life ◽  
Hypoglossal Nerve ◽  
Major Change ◽  
Percutaneous Gastrostomy ◽  
Petroclival Meningioma ◽  
Sf 36 ◽  
Skull Base Approach ◽  
Permanent Neurological Deficit ◽  
The Impact

Object The goals of this study were twofold: 1) to determine outcome, including quality of life, in patients who have undergone surgery for petroclival meningioma in which a standard skull base approach was used; and 2) to assess the impact of the patients' surgical treatment on their caregivers. Methods Seventeen patients (13 women and four men ranging in age from 29 to 63 years) who underwent a transpetrosal approach for a petroclival meningioma during a 5-year period were prospectively included in this study. Pre- and postoperative data including adverse events were noted. The patients were assessed at 3, 6, and 12 months postoperatively, and annually thereafter, and they completed a postoperative SF-36 questionnaire. In addition, each patient's caregiver was interviewed to determine the effect of the patient's illness on the caregiver's life and responsibilities. Twenty-two operations were performed. A new permanent neurological deficit developed in five patients and in eight a temporary deficit or exacerbation of existing deficits occurred. Two patients underwent surgery to create a facial-hypoglossal nerve communication; five required a temporary percutaneous gastrostomy and/or tracheostomy; three required a shunt; and one underwent successful squint surgery. At 1 year postoperatively 13 patients had made a good or moderate recovery, three were severely disabled, and one had died--outcomes in keeping with other studies. By contrast, responses to the SF-36 questionnaire showed that, in all eight of its categories, between 43% and 75% of surviving patients were functioning below accepted norms. Fifty-six percent of caregivers experienced a major change in lifestyle and 38% experienced a major change with respect to their work. Conclusions After transpetrosal excision of a petroclival meningioma, the quality of life for the patient is worse than that indicated in surgeons' reported results. The impact on the patient's caregiver is profound--a burden perhaps not fully appreciated by the surgeon.

Outcome after complex neurosurgery: the caregiver's burden is forgotten

1999 ◽  
Vol 91 (3) ◽  
pp. 359-363 ◽  
Author(s):  
Dorothy A. Lang ◽  
Glenn Neil-Dwyer ◽  
John Garfield
Keyword(s):  
Quality Of Life ◽  
Major Change ◽  
Percutaneous Gastrostomy ◽  
Content Type ◽  
Petroclival Meningioma ◽  
Sf 36 ◽  
Permanent Neurological Deficit ◽  
The Impact ◽  
Fine Print

Object. The goals of this study were twofold: 1) to determine outcome, including quality of life, in patients who have undergone surgery for petroclival meningioma in which a standard skull base approach was used; and 2) to assess the impact of the patients' surgical treatment on their caregivers.Methods. Seventeen patients (13 women and four men ranging in age from 29 to 63 years) who underwent a transpetrosal approach for a petroclival meningioma during a 5-year period were prospectively included in this study. Pre- and postoperative data including adverse events were noted. The patients were assessed at 3, 6, and 12 months postoperatively, and annually thereafter, and they completed a postoperative SF-36 questionnaire. In addition, each patient's caregiver was interviewed to determine the effect of the patient's illness on the caregiver's life and responsibilities.Twenty-two operations were performed. A new permanent neurological deficit developed in five patients and in eight a temporary deficit or exacerbation of existing deficits occurred. Two patients underwent surgery to create a facial—hypoglossal nerve communication; five required a temporary percutaneous gastrostomy and/or tracheostomy; three required a shunt; and one underwent successful squint surgery. At 1 year postoperatively 13 patients had made a good or moderate recovery, three were severely disabled, and one had died—outcomes in keeping with other studies. By contrast, responses to the SF-36 questionnaire showed that, in all eight of its categories, between 43% and 75% of surviving patients were functioning below accepted norms. Fifty-six percent of caregivers experienced a major change in lifestyle and 38% experienced a major change with respect to their work.Conclusions. After transpetrosal excision of a petroclival meningioma, the quality of life for the patient is worse than that indicated in surgeons' reported results. The impact on the patient's caregiver is profound—a burden perhaps not fully appreciated by the surgeon.

The effect of surgery in tenosynovial giant cell tumours as measured by patient-reported outcomes on quality of life and joint function

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 ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Giant Cell ◽  
Diffuse Type ◽  
Joint Function ◽  
Population Means ◽  
Sf 36 ◽  
Patient Reported ◽  
The Impact

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.

scholarly journals The impact of symptoms on daily life as perceived by patients with Charcot-Marie-Tooth type 1A disease

2021 ◽  
Author(s):  
Stefano Tozza ◽  
Dario Bruzzese ◽  
Daniele Severi ◽  
Emanuele Spina ◽  
Rosa Iodice ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Daily Life ◽  
Short Form ◽  
Lower Limbs ◽  
Charcot Marie Tooth ◽  
Rank Analysis ◽  
Sf 36 ◽  
Tooth Type ◽  
The Impact

Abstract Introduction In Charcot-Marie-Tooth type 1A (CMT1A) patients, daily life is mainly influenced by mobility and ambulation dysfunctions. The aim of our work was to evaluate the perception of disturbances that mostly impact on daily life in CMT1A patients and its difference on the basis of age, gender, disability, and quality of life. Methods Forty-one CMT1A patients underwent neurological assessment focused on establishing clinical disability through the Charcot-Marie-Tooth Neuropathy Score (CMTNS) and quality of life through the Short Form-36 (SF-36) questionnaire. We identified from CMT disturbances 5 categories [weakness in lower limbs (WLL), weakness in upper limbs (WUL), skeletal deformities (SD), sensory symptoms (SS), balance (B)] and patients classified the categories from the highest to the lowest impact on daily life (1: highest; 5: lowest). Ranking of the 5 categories, in the overall sample and in the different subgroups (dividing by gender, median of age and disease duration, CMTNS, domains of SF-36), was obtained and differences among subgroups were assessed using a bootstrap approach. Results Rank analysis showed that WLL was the most important disturbance on daily life whereas WUL had the lowest impact. In the older CMT1A group, the most important disturbance on daily life was B that was also the most relevant disturbance in patients with a greater disability. SD influenced daily life in younger patients. SS had less impact on daily life, with the exception of patients with a milder disability. Discussion Our findings demonstrated that the perception of disturbances that mostly impact on CMT1A patients’ daily life changes over the lifetime and with degree of disability.

scholarly journals Impact of malnutrition on health-related quality of life in persons receiving dialysis: a prospective study

2021 ◽  
pp. 1-24
Author(s):  
Daniela Viramontes-Hörner ◽  
Zoe Pittman ◽  
Nicholas M Selby ◽  
Maarten W Taal
Keyword(s):  
Quality Of Life ◽  
Prospective Study ◽  
Health Related Quality ◽  
Poor Hrqol ◽  
Sf 36 ◽  
Related Quality ◽  
Health Related ◽  
The Impact ◽  
Over Time

Abstract Health-related quality of life (HRQoL) is severely impaired in persons receiving dialysis. Malnutrition has been associated with some measures of poor HRQoL in cross-sectional analyses in dialysis populations, but no studies have assessed the impact of malnutrition and dietary intake on change in multiple measures of HRQoL over time. We investigated the most important determinants of poor HRQoL and the predictors of change in HRQoL over time using several measures of HRQoL. We enrolled 119 haemodialysis and 31 peritoneal dialysis patients in this prospective study. Nutritional assessments (Subjective Global Assessment [SGA], anthropometry and 24-hour dietary recalls) and HRQoL questionnaires (Short Form-36 [SF-36] mental [MCS] and physical component scores [PCS] and European QoL-5 Dimensions [EQ5D] health state [HSS] and visual analogue scores [VAS]) were performed at baseline, 6 and 12 months. Mean age was 64(14) years. Malnutrition was present in 37% of the population. At baseline, malnutrition assessed by SGA was the only factor independently (and negatively) associated with all four measures of HRQoL. No single factor was independently associated with decrease in all measures of HRQoL over 1 year. However, prevalence/development of malnutrition over one year was an independent predictor of 1-year decrease in EQ5D HSS and 1-year decrease in fat intake independently predicted the 1-year decline in SF-36 MCS and PCS, and EQ5D VAS. These findings strengthen the importance of monitoring for malnutrition and providing nutritional advice to all persons on dialysis. Future studies are needed to evaluate the impact of nutritional interventions on HRQoL and other long-term outcomes.

scholarly journals Impact of depression on quality of life in systemic lupus erythematosus patients

2021 ◽  
Vol 57 (1) ◽  
Author(s):  
Eman M. Khedr ◽  
Rania M. Gamal ◽  
Sounia M. Rashad ◽  
Mary Yacoub ◽  
Gellan K. Ahmed
Keyword(s):  
Quality Of Life ◽  
Systemic Lupus Erythematosus ◽  
Lupus Erythematosus ◽  
Short Form ◽  
Systemic Lupus ◽  
Positive Correlation ◽  
Depressed Patients ◽  
Sf 36 ◽  
The Impact

Abstract Background Depression is common in systemic lupus erythematosus (SLE) and is an unmeasured risk factor, yet its symptoms can be neglected in standard disease evaluations. The purpose of this study was to assess the frequency and the impact of depression on quality of life in SLE patients. We recruited 32 patients with SLE and 15 healthy control volunteers in the study. The following investigations were undertaken in each patient: clinical and rheumatologic assessment, SLE Disease Activity Index-2k (SLEDAI-2k), Beck Depression Inventory (BDI), Short-Form Health Survey (SF-36) questionnaire, and routine laboratory tests. Results There was a high percentage of depression (46.9%) in the SLE patients. Regarding quality of life (SF-36), there were significant affection of the physical and mental composite summary domains (PCS and MCS) scores in lupus patients compared with controls (P < 0.000 for both) with the same significant in depressed compared with non-depressed patients. SF-36 subscales (physical function, limit emotional, emotional wellbeing, and social function) were significantly affected in depressed lupus patients compared with non-depressed patients. There was a significant negative correlation between the score of MCS domain of SF-36 with BDI (P < 0.000) while positive correlation between SLEDAI score with depression score. In contrast, there were no significant correlations between MCS or PCS with age, duration of illness, or SLEDAI-2K. Conclusions Depression is common in SLE patients and had a negative impact on quality of life particularly on MCS domain and positive correlation with disease severity score. Trial registration This study was registered on clinical trial with registration number: NCT03165682 https://clinicaltrials.gov/ct2/show/NCT03165682 on 24 May 2017.

scholarly journals Reduced Health-Related Quality of Life in Body Constitutions of Yin-Xu, and Yang-Xu, Stasis in Patients with Type 2 Diabetes: Taichung Diabetic Body Constitution Study

2014 ◽  
Vol 2014 ◽  
pp. 1-10 ◽  
Author(s):  
Chia-I Tsai ◽  
Yi-Chang Su ◽  
Shih-Yi Lin ◽  
I-Te Lee ◽  
Cheng-Hung Lee ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Type 2 Diabetes ◽  
Health Related Quality ◽  
Body Constitution ◽  
Sf 36 ◽  
Related Quality ◽  
Health Related ◽  
The Impact

Aim. To evaluate how health-related quality of life (HRQOL) and traditional Chinese medicine (TCM) constitutions of Yin-Xu, Yang-Xu, and Stasis are related in type 2 diabetes patients. Method. Seven hundred and five subjects were recruited in 2010 for this study from a Diabetes Shared Care Network in Taiwan. Generic and disease-specific HRQOL were assessed by the short form 36 (SF-36) and the diabetes impact measurement scale (DIMS). Constitutions of Yin-Xu, Yang-Xu, and Stasis were then assessed by the body constitution questionnaire (BCQ), a questionnaire consisting of 44 items that evaluate the physiological state based on subjective symptoms and signs. Results. Estimated effects of the Ying-Xu and Stasis on all scales of the SF-36 were significantly negative, while estimated effects of the Yang-Xu on all scales (except for SF, RE, MH, and MCS) were significantly negative. For DIMS, the estimated effects of the Ying-Xu and Stasis on all scales were significantly negative except for Stasis on well-being, while Yang-Xu has a significantly negative effect only on symptoms. Conclusions. This study demonstrates that TCM constitutions of Yin-Xu, Yang-Xu, and Stasis are closely related to a reduction in HRQOL. These findings support the need for further research into the impact of intervention for TCM constitutions on HRQOL in patients with type 2 diabetes.

Quality of life during the first 6 months of interferon-b treatment in patients with MS

2000 ◽  
Vol 6 (5) ◽  
pp. 338-342
Author(s):  
J HA Arnoldus ◽  
J Killestein ◽  
L EMA Pfennings ◽  
B Jelles ◽  
B MJ Uitdehaag ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Depressive Symptoms ◽  
Side Effects ◽  
Physical Functioning ◽  
Bodily Pain ◽  
Significant Linear Trend ◽  
Role Physical ◽  
Sf 36 ◽  
The Impact

Objectives: To determine the quality of life (QoL) of MS patients during the initial 6 months of treatment with interferon-b (IFN-b). Furthermore, to determine whether changes in QoL relate to disability, emotional state, therapeutic expectations or side effect profile. Background: IFN-b has been shown to have beneficial effects on the course of MS. Since the aim of IFN-b treatment is not to cure but to slow down the disease it is important to know how this treatment affects QoL. Surprisingly, the impact of treatment with IFN-b on QoL measures has not been extensively studied so far. Methods: Case report documentation, including EDSS, SF-36 and MADRAS scores, of 51 relapsing-remitting MS patients treated with IFN-b was obtained at baseline and at months 1, 3 and 6. Patients also filled in a form about their expectations of therapy and a questionnaire on side effects. Results: During treatment there was a significant linear trend indicating improvement in the role-physical functioning (RPF) scale of the SF-36 (F1,50=4.9, P=0.032). A transient decrease at month 1 was found in the scale for bodily pain, indicating more experienced pain (F1,50=19.8, P50.001). Subgroup analysis showed that patients with most depressive symptoms on the MADRAS at baseline contributed most to the increase in RPF scores over time (F1,24=5,6 P=0.026). Furthermore, we found associations between adverse event scores and several domains of QoL. Conclusions: Our findings suggest that IFN-b therapy has an impact on QoL of MS patients in that it improves role-physical functioning and transiently worsens experienced bodily pain. QoL during treatment with IFN-b is influenced by depressive symptoms at baseline as well as by treatment-associated side-effects.

Abstract 147: Impact of Risk Factor Modification in Improving Quality of Life and Arrhythmia Symptoms in Patients With Atrial Fibrillation

2018 ◽  
Vol 11 (suppl_1) ◽  
Author(s):  
Amaryah Yaeger ◽  
Nancy R Cash ◽  
Tara Parham ◽  
Rajeev Pathak ◽  
David S Frankel ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Atrial Fibrillation ◽  
Risk Factor ◽  
Improve Quality ◽  
Risk Factor Modification ◽  
Obstructive Sleep ◽  
Sf 36 ◽  
The Impact ◽  
Factor Modification

Objective: The desired goal of atrial fibrillation (AF) management is maintenance of sinus rhythm in order to improve quality of life (QoL) and arrhythmia symptoms (AS). Although obesity and obstructive sleep apnea (OSA) are known risk factors for development of AF, these remain inadequately treated. We report the impact of prospectively modifying these risk factors on QoL and AS in AF patients (pts). Methods: AF pts with obesity (body mass index (BMI) ≥30kg/m 2 ) and/or the need for OSA management (high-risk as per Berlin Questionnaire or untreated OSA) were voluntarily enrolled in a nurse-led risk factor modification (RFM) program at their arrhythmia clinic visit. RFM entailed patient education, lifestyle modification counseling, coordination of care with appropriate specialists, and longitudinal care management. Progress with weight loss (WL) and OSA treatment was monitored via monthly follow-up calls and/or downloads from continuous positive airway pressure (CPAP) units for up to 12 months. QoL and AS were determined with the SF-36 and AF Severity Scale (AFSS) respectively, and were assessed at baseline, 6 months, and 12 months. Student t-test and chi-square tests were used to compare continuous and dichotomous variables. Results: From 11/1/16 to 10/31/17, 252 pts (age 63±11 years; male=179; paroxysmal AF=126) were enrolled as follows: 189 for obesity and 93 for OSA. The mean WL was 2.7±3.8% from baseline and 78% (n=126 of 162 pts with available data) of enrolled obese patients achieved WL. Among 93 pts at risk for OSA, 70 completed sleep studies and 50 were identified with OSA. Majority of these patients (76%; n=38 of 50) started CPAP therapy and have remained full (57%; n=17 of 30 pts with available CPAP data) and partial (13%; n=4 of 30) users. Table shows that SF-36 and AFSS scores improved for most measures of QoL and AS from baseline to 6 months. Conclusion: Participation in a risk factor modification program targeting obesity and obstructive sleep apnea can improve quality of life and arrhythmia symptoms in patients with atrial fibrillation. The impact of this strategy on long-term maintenance of sinus rhythm remains to be determined.

scholarly journals Mastectomy versus conservative surgical treatment: the impact on the quality of life of women with breast cancer

2010 ◽  
Vol 10 (1) ◽  
pp. 51-57 ◽  
Author(s):  
Daniela Francescato Veiga ◽  
Fabíola Soares Moreira Campos ◽  
Leda Marques Ribeiro ◽  
Ivanildo Archangelo Junior ◽  
Joel Veiga Filho ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Quality Of Life ◽  
Physical Functioning ◽  
Negative Impact ◽  
Young Patients ◽  
Conservative Surgery ◽  
Sf 36 ◽  
Significant Difference ◽  
The Impact

OBJECTIVES: to compare the impact of mastectomy and conservative surgery on the quality of life of patients with breast cancer. METHODS: an assessment was made of the quality of life of patients undergoing mastectomy or segmentary mastectomy, at the Pouso Alegre Clinical Hospital, in the Brazilian State of Minas Gerais, using SF-36. The patients were grouped by age (<50 years and >50 years) and years of schooling (<8 years and >8 years). The Mann-Whitney test was used to compare the groups with regard to the age and schooling domains of SF-36. RESULTS: a significant difference between the two groups was found in the domains of "physical functioning" (p=0.04) and "pain" (p=0.01): with the patients undergoing a mastectomy registering the worst scores. Young patients who had undergone a mastectomy displayed the worst quality of life in terms of "physical functioning" (p=0.03), "pain" (p=0.01) and "social functioning" (p=0.01); those undergoing conservative surgery aged over 50 years scored worst on "role emotional" (p=0.05). Patients undergoing a mastectomy with lower levels of schooling scored lower in "physical functioning" (p=0.01), "role physical" (p=0.05) and "pain" (p=0.05). Among those who had attended school for more than eight years, those having undergone a mastectomy scored less in the "pain" domain (p=0.04). CONCLUSIONS: patients who had undergone a mastectomy had worse results in the physical component of the evaluation of quality of life and this negative impact was more strongly felt among younger patients and those with lower levels of schooling.

The impact of telehealth care on health-related quality of life of patients with heart failure: Results from the Danish TeleCare North heart failure trial

2019 ◽  
Vol 26 (7-8) ◽  
pp. 452-461 ◽  
Author(s):  
Simon L Cichosz ◽  
Flemming W Udsen ◽  
Ole Hejlesen
Keyword(s):  
Quality Of Life ◽  
Heart Failure ◽  
Health Related Quality ◽  
Primary Analysis ◽  
Sf 36 ◽  
Patients With Heart Failure ◽  
Related Quality ◽  
Health Related ◽  
The Impact

Aim The aim of this study was to assess the impact on health-related quality of life (HRQoL) of a telehealth care solution compared with usual practice of patients with heart failure (HF). Methods A randomized controlled trial with a telehealth care solution (Telekit) as the intervention (with a focus on self-empowerment achieved by engaging patients in their own illness through self-monitoring) combined with usual care and usual care as the control. The primary outcome was a change in HRQoL as measured by the Short Form-36 (SF-36) questionnaire Physical Component Summary (PCS) score. Secondary outcomes were changes in HRQoL as measured by the SF-36 questionnaire Mental Component Summary (MSC) score and the HF disease-specific questionnaire Kansas City Cardiomyopathy Questionnaire 12 (KCCQ12) score, all of which were assessed from baseline to approximately 12 months’ follow-up between the two groups. Outcomes were assessed via unadjusted and adjusted analyses. Results At baseline, 299 (145 interventions, 154 controls) patients were enrolled. In the primary analysis ( n = 299), the adjusted intervention effects were PCS –0.81 (95% CI −2.7–1.1), MCS 4.66 (95% CI 1.8–7.5) and KCCQ12 3.67 (95% CI −0.7–8.1). Only the change in MCS was statistically significant. An unadjusted analysis replicated the primary analysis. Complete case analyses ( n = 193) generally resulted in a lower intervention effect on the PCS score, but the difference remained statistically insignificant. Conclusions Only the MCS score was significantly higher in the telehealth care group compared to the control group. ClinicalTrials.gov (NCT02860013), July 28, 2016

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