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.

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.

Patient-assessed outcomes after excision of acoustic neuroma: postoperative symptoms and quality of life

2001 ◽  
Vol 94 (2) ◽  
pp. 211-216 ◽  
Author(s):  
Helen C. Martin ◽  
Jagjit Sethi ◽  
Dorothy Lang ◽  
Glen Neil-Dwyer ◽  
Mark E. Lutman ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Social Functioning ◽  
Acoustic Neuroma ◽  
Physical Functioning ◽  
Short Form ◽  
Content Type ◽  
Sf 36 ◽  
Postoperative Symptoms ◽  
Fine Print

Object. The aim of this study was to assess whether outcomes from excision of acoustic neuroma vary among patients and have a material impact on their quality of life (QOL). Methods. A questionnaire concerning postoperative symptoms and the Short Form 36 (SF-36) QOL instrument were mailed to 97 consecutive patients who had undergone acoustic neuroma surgery via the translabyrinthine approach. The survey response rate was 78% and the symptomatology was consistent with other reports, supporting the representativeness of the sample. The respondents' QOL was rated significantly below published norms and their work capacity was reportedly reduced. Specifically, the following SF-36 dimensions were reduced: physical functioning and role-physical, together with vitality, general health, and social functioning. Greater numbers of postoperative symptoms and larger tumors were associated with a worse rating of physical functioning. More severe balance problems were associated with lower ratings of social functioning. The disparity between the patient's self-estimate and self-measurement and the clinician's assessment of the patient's facial functioning raises doubts about the validity of subjective reports and assessment. Conclusions. The present study supports the use of generic QOL measures to assess outcome and to draw comparisons between different populations.

Self-assessed quality of life after acoustic neuroma surgery

2003 ◽  
Vol 99 (5) ◽  
pp. 818-823 ◽  
Author(s):  
Simone A. Betchen ◽  
Jane Walsh ◽  
Kalmon D. Post
Keyword(s):  
Quality Of Life ◽  
Acoustic Neuroma ◽  
Hearing Level ◽  
Content Type ◽  
Sf 36 ◽  
Acoustic Neuroma Surgery ◽  
Persistent Headache ◽  
Facial Function ◽  
Fine Print

Object. The aim of this study was to determine if factors such as postoperative hearing, facial function, headaches, or other factors have an impact on self-assessed quality of life (QOL) after acoustic neuroma surgery. Methods. The SF-36 and seven additional questions on the impact of surgery on the QOL were sent to 135 consecutive patients who had undergone acoustic neuroma surgery. The Spearman rho correlations were calculated for each of the eight categories of the SF-36 (general health, physical functioning, physical role limitations, emotional role limitations, mental health, energy/vitality, pain, social functioning). The results were correlated with patients' sex, age, persistent headache, years since surgery, postoperative hearing level, and facial function. The response rate was 74.8%. The transformed scores of the eight categories of the SF-36 were lower than age-matched healthy controls in approximately half of the categories. The strongest trend toward lower scores with statistical significance in two categories was persistent headaches. Some categories demonstrated trends toward lower scores with females or age older than 55 years. Postoperative hearing and facial functioning, and time since surgery showed no statistically significant impact on QOL measured by the SF-36. Responses to the additional questions indicate that hearing, facial function, and headache influenced people's feelings about surgery and had an impact on their return to work. Conclusions. The QOL scores are not consistently lower than population normative values compared with different normative studies. The strongest correlation was between the presence of persistent headache and QOL. Other correlations were not consistent in all categories, and few were statistically significant. These trends in some categories do not explain the difference seen between patients after acoustic neuroma surgery in this study and normal populations in other studies.

Changes in functional outcome and quality of life in patients and caregivers after aneurysmal subarachnoid hemorrhage

2001 ◽  
Vol 95 (6) ◽  
pp. 957-963 ◽  
Author(s):  
Jeannette W. Hop ◽  
Gabriel J. E. Rinkel ◽  
Ale Algra ◽  
Jan van Gijn
Keyword(s):  
Quality Of Life ◽  
Subarachnoid Hemorrhage ◽  
Functional Outcome ◽  
Case Fatality ◽  
Time Interval ◽  
Consecutive Series ◽  
Content Type ◽  
Sf 36 ◽  
Fine Print

Object. Although the case-fatality rate after subarachnoid hemorrhage (SAH) does not change considerably after the first 4 weeks, functional outcome and the quality of life (QOL) may. To assess the extent of changes in functional outcome and QOL after SAH, the authors conducted a follow-up study at 18 months in patients and caregivers who had participated in a previous study of QOL 4 months after SAH. Methods. In a consecutive series of 98 patients admitted with SAH, 68 had survived until 4 months postbleed, at which time an initial outcome assessment had been performed in 64 of them. This series of 64 patients was contacted again at a median of 18 months after SAH. In all patients, functional outcome was assessed by means of the modified Rankin Scale (mRS). In 48 patients and 35 caregivers QOL was assessed using the SF-36, the Sickness Impact Profile (SIP), and a visual analog scale. The results were compared with the scores that had been obtained at 4 months after SAH. Thirty-two patients (50%) had improved at least one point on the mRS, in 23 patients functional outcome had remained unchanged, six patients had deteriorated one point on the mRS, and three had died. No major changes in the QOL of patients and caregivers could be found on the SIP, but on the SF-36 an improved QOL was detected in patients with better Rankin grades. On both instruments, the QOL at 18 months was still reduced compared with the reference population in all patients. Conclusions. Functional outcome improves significantly between 4 months and 18 months post-SAH; studies on functional outcome after SAH can be compared only if outcome is assessed at the same time interval. The improved functional outcome seems to be accompanied by an improved QOL.

Long-term health-related quality of life outcomes following Jefferson-type burst fractures of the atlas

2005 ◽  
Vol 2 (4) ◽  
pp. 411-417 ◽  
Author(s):  
Marcel F. Dvorak ◽  
Michael G. Johnson ◽  
Michael Boyd ◽  
Garth Johnson ◽  
Brian K. Kwon ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Health Related Quality ◽  
Content Type ◽  
Sf 36 ◽  
Related Quality ◽  
Health Related ◽  
Fine Print

Object. The primary goal of this study was to describe the long-term health-related quality of life (HRQOL) outcomes in patients who have suffered Jefferson-type fractures. These outcomes were compared with matched normative HRQOL data and with the patient's perceptions of their HRQOL prior to the injury. Variables that potentially influence these HRQOL outcomes were analyzed. No standardized outcome assessments have been published for patients who suffer these fractures; their outcomes have long thought to be excellent following treatment. Determining the optimal surrogate measure to represent preinjury HRQOL in trauma patients is difficult. Methods. A retrospective review, radiographic analysis, and cross-sectional outcome assessment were performed. The Short Form (SF)—36 and the American Academy of Orthopaedic Surgeons/North American Spine Society (AAOS/NASS) outcome instruments were filled out by patients at final follow-up examination (follow-up period 75 months, range 19–198 months) to represent their current status as well as their perceptions of preinjury status. In 34 patients, the SF-36 physical component score and the AAOS/NASS pain values were significantly lower than normative values. There was no significant difference between normative and preinjury values. Spence criteria greater than 7 mm and the presence of associated injuries predicted poorer outcome scores during the follow-up period. Conclusions. Long-term follow-up examination of patients with Jefferson fractures indicated that patients' status does not return to the level of their perceived preinjury health status or that of normative population controls. Those with other injuries and significant osseous displacement (≥ 7 mm total) may experience poorer long-term outcomes. Limitations of the study included a relatively low (60%) response rate and the difficulties of identifying an appropriate baseline outcome in a trauma population with which the follow-up outcomes can be compared.

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.

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