scholarly journals Development of the Gait Outcomes Assessment List for Lower Limb Differences (GOAL-LD) Questionnaire:  A Child and Parent Reported Outcome Measure

2021 ◽  
Author(s):  
Jennifer A Dermott ◽  
Virginia Wright ◽  
Nancy M Salbach ◽  
Unni G Narayanan

Abstract Background: To develop a priority-based patient/parent reported outcome measure for children with lower-limb differences (LD) by adapting the Gait Outcomes Assessment List (GOAL) questionnaire. Methods: Guided by a conceptual framework of patient priorities, the GOAL questionnaire was iteratively modified and its sensibility evaluated by field-testing it on children with LD, and their parents. Cognitive interviews were conducted with a subgroup of these children, and an e-survey administered to a multidisciplinary group of health care professionals with expertise in paediatric LD. Findings were integrated to create the final version of the GOAL-LD.Results: Twenty-five children (9-18 years), 20 parents, and 31 healthcare professionals evaluated the content and sensibility of the GOAL, with an emphasis on the relevance and importance of the items to patients’ health related quality of life (HRQL). This resulted in the retention of 26 of the original 50 items, elimination of 12, modification of 12, and addition of seven new items. The new 45-item GOAL-LD questionnaire was shown to be sensible and its content deemed important.Conclusions: The GOAL-LD questionnaire has a high level of face and content validity, and sensibility. It comprehensively captures the HRQL goals and outcomes that matter to children with LD and their parents. Following further psychometric evaluation, the GOAL-LD may serve as a much needed evaluate patient and parent reported outcome measure for this population.

2020 ◽  
Author(s):  
Jennifer A Dermott ◽  
Virginia Wright ◽  
Nancy M Salbach ◽  
Unni G Narayanan

Abstract Purpose: To develop a priority-based patient /parent reported outcome measure for children with lower-limb differences (LD) by adapting the Gait Outcomes Assessment List (GOAL) questionnaire. Methods: Guided by a conceptual framework of patient priorities, the GOAL questionnaire was iteratively modified and its sensibility evaluated by field-testing it on children with LD and their parents. Cognitive interviews were conducted with a subgroup of these children, and an e-survey administered to a multidisciplinary group of health care professionals with expertise in paediatric LD. Findings were integrated to create the final version of the GOAL-LD. Results: Twenty-five children, 20 parents, and 31 healthcare professionals evaluated the content and sensibility of the GOAL, with an emphasis on the relevance and importance of the items to patients’ health related quality of life (HRQL). This resulted in the retention of 26 of the original 50 items, elimination of 12, modification of 12, and addition of seven new items. The new 45-item GOAL-LD questionnaire was shown to be sensible and its content deemed important. Conclusion: The GOAL-LD questionnaire has a high level of face and content validity, and sensibility. It comprehensively captures the HRQL goals and outcomes that matter to children with LD and their parents. Following further psychometric evaluation, the GOAL-LD may serve as a much needed patient and parent reported outcome measure for this population.


2021 ◽  
Vol 12 ◽  
pp. 204062232110243
Author(s):  
Federica Guerra ◽  
Jessica Ranieri ◽  
Domenico Passafiume ◽  
Diana Lupi ◽  
Daniela Maccarone ◽  
...  

Background and aims: The increase in innovative and personalized medicine solutions in kidney surgery can improve patients’ chances of survival; however, during the transplantation process, patients are exposed to many psychological challenges. This study aimed to evaluate the role and impact of personality dimensions on the behaviour of waiting-list patients towards the post-surgery adaptation process. Method: The participants were 113 out-patients aged 18–70 years (mean age 54.7 years, SD ± 9.9) who had received a kidney transplant at least 3 years prior to the study. Results: The results of the study revealed that personality dimensions can predict mental health-related quality of life after kidney transplantation; in particular, the dimensions play an important role in patients’ behavioural ability to manage their quality of life both during end-stage renal disease and after kidney transplantation. Psychological distress and anxiety were associated with a low level of the conscientiousness dimension, while a high level of the openness dimension was associated with a high level of psychological distress and stress. In addition, body self-perception was associated with personality dimensions. Conclusion: Personality dimensions were found to predict behavioural reactions when emotional traits and body self-perception for each patient were combined; clinical psychologists could apply personalized intervention by modeling the treatments step by step and mitigating the negative effects of the whole kidney transplantation disease, thus helping the individual to adapt to a new life.


Author(s):  
Joanna Dymecka ◽  
Mariola Bidzan

The aim of this research was to assess the level of adaptation to multiple sclerosis (Sclerosis multiplex; MS) and health-related quality of life (HRQoL) of the study population as well as to determine the relationship between biomedical factors related to the course of multiple sclerosis, adaptation to the disease, and HRQoL. Analysis of medical records, clinical and psychological interviews, the Extended Disability Status Scale (EDSS), Guy’s Neurological Disability Scale (GNDS), the Acceptance of Illness Scale (AIS), and the Multiple Sclerosis Impact Scale 29 (MSIS-29) were collected from 137 patients with MS. It was found that there was a relation between motor impairment, neurological disability, adaptation to illness, and HRQoL; it was also found that there were negative correlations between adaptation to illness and the severity of lower-limb disability, fatigue, mood disorders, other problems related to MS, and upper-limb disability. Of all the symptoms, lower-limb disability, fatigue, and mood disorders had the strongest relation with adaptation. All of the analysed symptoms were found to correlate with HRQoL. Of all the symptoms, HRQoL was most affected by lower- and upper-limb disability, fatigue, other MS problems, and mood disorders.


2018 ◽  
Vol 100-B (11) ◽  
pp. 1506-1510 ◽  
Author(s):  
B. Parker ◽  
S. Petrou ◽  
J. P. M. Masters ◽  
F. Achana ◽  
M. L. Costa

Aims The aim of this study was to estimate economic outcomes associated with deep surgical site infection (SSI) in patients with an open fracture of the lower limb. Patients and Methods A total of 460 patients were recruited from 24 specialist trauma hospitals in the United Kingdom Major Trauma Network. Preference-based health-related quality-of-life outcomes, assessed using the EuroQol EQ-5D-3L and the 6-Item Short-Form Health Survey questionnaire (SF-6D), and economic costs (£, 2014/2015 prices) were measured using participant-completed questionnaires over the 12 months following injury. Descriptive statistics and multivariate regression analysis were used to explore the relationship between deep SSI and health utility scores, quality-adjusted life-years (QALYs), and health and personal social service (PSS) costs. Results Deep SSI was associated with lower EQ-5D-3L derived QALYs (adjusted mean difference -0.102, 95% confidence interval (CI) -0.202 to 0.001, p = 0.047) and increased health and social care costs (adjusted mean difference £1950; 95% CI £1383 to £5285, p = 0.250) versus patients without deep SSI over the 12 months following injury. Conclusion Deep SSI may lead to significantly impaired health-related quality of life and increased economic costs. Our economic estimates can be used to inform clinical and budgetary service planning and can act as reference data for future economic evaluations of preventive or treatment interventions. Cite this article: Bone Joint J 2018;100-B:1506–10.


2018 ◽  
Vol 43 (1) ◽  
pp. 104-111 ◽  
Author(s):  
Wing Sum Li ◽  
Sze Ying Chan ◽  
Wai Wang Chau ◽  
Sheung-wai Law ◽  
Kai Ming Chan

Background: The 2008 Sichuan Earthquake resulted in many amputees, yet due to the rare incidence, few studies have explored the rehabilitation outcomes and quality of life of bilateral lower limb amputees after major natural disasters. Objectives: To evaluate rehabilitation outcomes of 17 young and adult bilateral lower limb amputees under the StandTall rehabilitation programme and to identify factors associated with successful functional recovery of bilateral amputees after large-scale disasters. Study Design: Cross-sectional study. Methods: Mobility (amputee mobility predictor), prosthesis use (Houghton Scale) and health-related quality of life (Trinity Amputation and Prosthesis Experience Scale, Short Form 12) were evaluated through questionnaires and performance-based assessments. Means of scores were compared using T-tests. Results: Subjects with bilateral through-knee or transtibial amputations had less activity restriction ( p < 0.01) and higher mobility ( p = 0.03). Subjects using prostheses more than 50% waking time had better general adjustment ( p = 0.02) and less functional restriction ( p = 0.01). Exercise and education were associated with higher mobility ( p = 0.06) and mental quality of life, respectively ( p = 0.09). Conclusions: Amputation level and knee joint salvage, prosthesis use, exercise and education were associated with better rehabilitation outcomes including ambulation, adjustment and quality of life in bilateral lower limb amputees from the 2008 Sichuan Earthquake. Clinical relevance The study examined a unique group of traumatic bilateral lower limb amputees who were young and healthy before having traumatic amputations from a single episode of natural disaster. The factors associated with better functional recovery after the earthquake were investigated and may support future development of post-disaster rehabilitation strategies for bilateral lower limb amputees.


2020 ◽  
pp. 002076402094280 ◽  
Author(s):  
Jelena Stojanov ◽  
Marina Malobabic ◽  
Goran Stanojevic ◽  
Milos Stevic ◽  
Vuk Milosevic ◽  
...  

Background: Health care professionals exposed to coronavirus disease 2019 (COVID-19) are facing high levels of stress. Aim: The aim was to evaluate the quality of sleep (QoS) and health-related quality of life (HRQoL), among health care professionals treating patients with COVID-19, as well as quantifying the magnitude of symptoms of depression and levels of anxiety. Methods: We included 201 health care professionals in a cross-sectional, web-based study by applying 7-item Generalized Anxiety Disorder (GAD-7) Scale, Zung Self-rating Depression Scale, 36-item Health Survey of the Medical Outcomes Study Short Form (SF36), Pittsburgh Sleep Quality Index (PSQI) and additional survey constructed for the purpose of the study. Results: Health care workers who treated COVID-19 patients were more afraid of becoming infected or of transmitting the infection to a family member with a significantly low self-assessment of their mental status. Poor QoS and HRQoL correlated with high health anxiety and severe depressive symptoms and several demographic characteristics. Multiple linear regression analysis showed that higher scores on GAD-7 (beta = .71, p < .01) and lower scores on mental health (MH) subscale on SF36 questionnaire (beta = –.69; p < .01) were independent predictors of the higher PSQI score (adjusted R2 = .61, p < .01 for overall model). Higher scores on GAD-7 (beta = .68, p < .01) and worse self-perceived mental status (beta = .25; p < .05) were independent predictors of the lower SF36 scores (adjusted R2 = .73, p < .01 for overall model). Conclusion: The major MH burden of health care professionals treating infected patients during the COVID-19 pandemic indicates that they need psychological support.


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