Quality of life and satisfaction in surgical versus conservative treatment of nonsyndromic children with craniosynostosis

Author(s):  
Nicholas Sader ◽  
Vivek Mehta ◽  
Shannon Hart ◽  
Lori Bliss ◽  
Hanna Moore ◽  
...  

OBJECTIVE Craniosynostosis represents the second most common reason for referral to pediatric neurosurgery. However, the quality of life and neurodevelopmental impact of leaving this physical disorder uncorrected is poorly understood. METHODS This multicenter cross-sectional study identified previously managed nonsyndromic infants (< 24 months of age) with single-suture craniosynostosis at both pediatric neurosurgical centers in Alberta, Canada. The primary variable of interest was the allocated treatment (surgical vs conservative). The primary outcome was the Pediatric Quality of Life Inventory (PedsQL), a validated measure of quality of life examining physical, emotional, social, and school functioning. Treatment decision satisfaction and the reasons for selected management were quantified and collected directly from caregivers. RESULTS One hundred fourteen children met the inclusion criteria: 78% underwent surgery and 22% had conservative treatment. The most common suture affected was sagittal (54%), followed by metopic (33%), coronal (10%), and lambdoid (3%). Caregivers most commonly opted for surgery because of severe appearance (80%). Seventy-six percent and 72% of the caregivers of children with conservative management did so due to concerns of surgical risks and mild appearance, respectively. There was a statistically significant relationship between both the parents’ (p < 0.001) and the surgeon’s (p = 0.001) impression of a severe head shape and surgical management. Parental satisfaction with their child’s appearance as well as satisfaction with their treatment decision did not differ between management types. Regarding quality of life, on univariate analysis, the conservative group had a statistically higher physical summary score (p = 0.01), psychosocial summary score (p = 0.004), and mean total scale score (p = 0.003) compared to the surgical group. However, after adjusting for severity and age at consult, no significant independent associations between management type and any of the PedsQL summary scores were found. CONCLUSIONS Alberta families have a high number of children with craniosynostosis treated with conservative management. Conservatively managed infants were largely minimally affected patients, particularly those with metopic synostosis. The study found no independent association between management type (surgery vs conservative) and quality of life when adjusted for important patient factors.

2020 ◽  
Vol 28 (2) ◽  
pp. 119-133
Author(s):  
Nicola Davies ◽  
Teresa Burdett

PurposeIntegrated healthcare is a central tenant of the NHS Long Term Plan (NHS, 2019). NICE in 2019 published guidelines; advising the integration of multidisciplinary professionals which may lead to an improvement in conservative treatment methods of pelvic organ prolapse. Therefore, current literature on the conservative treatments for pelvic organ prolapse needs to be reviewed to ascertain if an integrated approach would improve the symptoms and quality of life for women.Design/methodology/approachA systematic review of the literature between 2013 and 2018 was implemented. Papers included were written in English, peer-reviewed and consisted of treatments of pelvic organ prolapse in women. Papers containing surgical interventions, postpartum participants, reviews, evaluations, guidelines, follow-up studies, focusing on cost effectiveness, sexual function were excluded.FindingsSeven studies in total were included, and two overarching themes were identified: quality of life after treatment and the effect of conservative treatment on pelvic organ prolapse symptoms. The literature suggested that integrating care had a more positive outcome on pelvic organ symptoms and quality of life.Research limitations/implicationsTo develop a robust enhanced model of care for conservative treatment of pelvic organ prolapse through more mixed method or qualitative research, that incorporates integrative treatment methods with collaboration from multidisciplinary professionals.Practical implicationsThe practical implications of integrating the conservative management of pelvic organ prolapse is the communication between the multidisciplinary team must be exceptional to ensure everyone understands and agrees the treatment that is being provided to patient. Also, effective teamwork is important to ensure the patient receives the best care with input from the correct disciplines. The multi-professional team will need to have regular meetings to discuss and implement care plans for patients that might prove difficult to schedule due to differing commitments and priorities. This must be overcome to insure a successful and effective integrated approach to pelvic organ prolapse is delivered.Social implicationsThe social implications of integrating the professional approach to women's care of pelvic organ prolapse involves reducing the severity of the symptoms therefore, increasing the quality of life. This may result in the reduction of surgical intervention due to the patient being satisfied with the conservative management. Through integrating the management of the prolapse the patient will receive an accessible individualised care plan pathway that focuses on treating or reducing the impact of the symptoms that are bothersome to the patient whilst managing patient expectations. Patients will also, be reassured by the number of multi-disciplinary professionals involved in their care.Originality/valueGlobal integration of conservative treatments and multidisciplinary-professionals specialising in pelvic organ prolapse and pelvic floor dysfunction is needed.


Cephalalgia ◽  
2014 ◽  
Vol 35 (8) ◽  
pp. 683-691 ◽  
Author(s):  
Marian Gómez-Beldarrain ◽  
Ane Anton-Ladislao ◽  
Urko Aguirre-Larracoechea ◽  
Isabel Oroz ◽  
Juan Carlos García-Moncó

Objective The objective of this article is to test the hypothesis that cognitive reserve (CR) is related to migraine chronification, medication overuse and poor quality of life in migraineurs. Design/methods A cross-sectional study on patients with chronic migraine with medication overuse (CM-MOH), episodic migraine (EM), and controls, matched by sex, age and education, was carried out. CR was assessed by a specific questionnaire, and quality of life was measured by general and specific questionnaires (SF-36 and MSQoL). Migraine Disability Assessment Scale and Beck questionnaires for depression and anxiety were used. Medication dependence was evaluated by the medication-dependence questionnaire in headache (MDQ-H). Results Fifty-five individuals were enrolled: 18 CM-MOH patients (32.73%), 22 EM patients (40%) and 15 controls (27.27%). Fifty (90.91%) of them were females and aged 43.53 (7.54) years. Univariate analysis showed a significant association between the study group and CR, and all items of the SF-36, anxiety and depression questionnaires, MSQoL and MDQ-H. The lower CR and CM-MOH group were related to a worse quality of life, more anxiety and depression and the highest medication dependence scores. Multivariate analysis showed that higher CR scores were related to higher quality of life as measured by the physical and mental composite scores of the SF-36, and to lower anxiety (beta = −1.08, p = 0.001) and depression (beta = −0.56, p = 0.03) levels. Focusing on MSQoL, the increase in CR was predictive of a better quality of life (beta = 1.88, p < 0.0001). By all the models, the explained variance of the sample ranged from 39% (mental composite score) to 58% (MSQoL). Conclusions Low CR appears to be an independent factor associated with the deterioration of quality of life, the presence of anxiety and depression, and drug dependence and medication overuse in CM-MOH.


2021 ◽  
Author(s):  
roberto damian pacheco pinto ◽  
Ricardo Yuji Abe ◽  
Flavia Cid Gomes ◽  
Paulo Rodolfo Tagliari Barbisan ◽  
Alexandre Fattah Martini ◽  
...  

Abstract Purpose: To assess quality of life in keratoconus patients using the Keratoconus Outcomes Research Questionnaire (KORQ) translated and validated to Portuguese language. KORQ is the only validated keratoconus specific questionnaire and has high rating for psychometric properties.Methods: In this cross-sectional study enrolled 100 patients with keratoconus from a tertiary referral eye hospital, from April 2018 to June 2019. Associations between age, gender, allergic conjunctivitis, keratoconus stage, best-corrected visual acuity (BCVA), maximum simulated keratometry (Kmax), steep keratometry (K2), pachymetry, treatments performed, hydrops and KORQ scores were evaluated with univariate (Wilcoxon test and the Kruskal Wallis test) and multivariate linear regression with stepwise backward modeling. Lower scores of KORQ are associated with better quality of life, as well as higher scores are associated with greater impairment of functional activities and symptoms.Results: Out of the 100 patients, mild, moderate and severe keratoconus, was observed in 15%, 46% and 39% of participants, respectively. Univariate analysis showed lower values for function scores with male gender (p<0.05) and both functional and symptoms scores statistically associated with BCVA<0.3 (LogMAR) (p<0.05). Multivariate analysis indicated significantly lower functional scores in individuals with BCVA<0.3 (p<0.001) and those with history of crosslinking treatment (p=0.022), while symptom scores were only statistically associated with BCVA<0.3 (p<0.001).Conclusions: In patients with keratoconus, BCVA in the better eye and history of crosslinkig are factors were associated with better quality of life scores using KORQ.


BMJ Open ◽  
2019 ◽  
Vol 9 (5) ◽  
pp. e027776 ◽  
Author(s):  
Karan K Shah ◽  
Fliss E M Murtagh ◽  
Kevin McGeechan ◽  
Su Crail ◽  
Aine Burns ◽  
...  

ObjectiveTo measure health-related quality of life (HRQoL) and well-being in older people with end-stage kidney disease (ESKD) and to determine the association between treatment type and sociodemographic characteristics on these outcome measures. In addition, to assess the convergent validity between the HRQoL and well-being measure and their feasibility and acceptability in this population.DesignProspective cross-sectional study.SettingThree renal units in the UK and Australia.Participants129 patients with ESKD managed with dialysis or with an estimated glomerular filtration ≤10 mL/min/1.73 m2and managed with comprehensive conservative, non-dialytic care.Outcome measuresHRQoL and well-being were assessed using Short-Form six dimensions (SF-6D, 0–1 scale); Kidney Disease Quality of Life (KDQOL-36) (0–100 scale) and Investigating Choice Experiments Capability Measure-Older people (ICECAP-O, 0–1 scale). Linear regression assessed associations between treatment, HRQoL and well-being. Pearson’s correlation coefficient assessed convergent validity between instruments.ResultsMedian age of 81 years (IQR 78–85), 65% males; 83 (64%) were managed with dialysis and 46 (36%) with conservative care. When adjusted for treatment type and sociodemographic variables, those managed on dialysis reported lower mean SF-6D utility (−0.05, 95% CI −0.12 to 0.01); lower KDQOL Physical Component Summary score (−3.17, 95% CI −7.61 to 1.27); lower Mental Component Summary score (−2.41, 95% CI −7.66 to 2.84); lower quality of life due to burden (−28.59, 95% CI −41.77 to −15.42); symptoms (−5.93, 95% CI −14.61 to 2.73) and effects of kidney disease (−16.49, 95% CI −25.98 to −6.99) and lower overall ICECAP-O well-being (−0.07, 95% CI −0.16 to 0.02) than those managed conservatively. Correlation between ICECAP-O well-being and SF-6D utility scores was strong overall, 0.65 (p<0.001), but weak to moderate at domain level.ConclusionsOlder people on dialysis report significantly higher burden and effects of kidney disease than those on conservative care. Lower HRQoL and well-being may be associated with dialysis treatment and should inform shared decision-making about treatment options.Trial registration numberUK (IRAS project ID: 134360andREC reference 14/LO/0291) and Australia (R20140203 HREC/14/RAH/36).


2017 ◽  
Vol 70 (4) ◽  
pp. 851-859 ◽  
Author(s):  
Roberta Maria de Pina Pereira ◽  
Marcelo Aparecido Batista ◽  
Aline de Sousa Meira ◽  
Marília Pilotto de Oliveira ◽  
Luciana Kusumota

ABSTRACT Objective: To describe the quality of life (QOL) of elderly people with Chronic Kidney Disease (CKD) in conservative treatment, correlating it with sociodemographic and health-related aspects. Method: This is a quantitative, cross-sectional, and descriptive study that used: a previously validated instrument for data collection; the WHOQOL-BREF and WHOQOL-OLD QOL scales; and the Mini-Mental State Examination. Results: Thirty-five elderly people (54.30% females), with mean age of 68.26 years, took part in the study. They reported, on average, 3.70 comorbidities and 5.60 complications related to CKD. Regarding QOL, the "psychological" domain (54.40±16.29) and the "death and dying" facet (37.32±23.79) were considered the most damaged ones; the most strengthened were "social relationships" (70.36±18.32) and "intimacy" (66.61±16.80). A positive correlation was verified between comorbidities and complications (p = 0.015), and an inverse correlation between the number of complications and QOL (p = 0.004). Conclusion: These results, if considered during the care planning, may help improving the quality of the care provided for elderly people with CKD.


2020 ◽  
Vol 11 (SPL4) ◽  
pp. 3170-3175
Author(s):  
Madeeha Malik ◽  
Emmama Jamil ◽  
Azhar Hussain

Quality of life evaluation is a valuable measure in optimizing care of patients with ovarian cancer, but more research is required to make such evaluations suitably inexpensive and easy to perform so that they can be more fully incorporated into general oncologic practice. The present study was designed to assess the quality of life among ovarian cancer patients in Pakistan. A descriptive cross-sectional study design was used. A pre validated questionnaire, i.e. EORTC-QLQ-Ov-28 was self-administered to a sample of 383 women diagnosed with ovarian cancer selected using a convenience sampling technique. After data collection, data was cleaned, coded and entered in SPSS. Univariate analysis was performed to find out the differences among different variables. Univariate analysis was conducted comparing the symptom and functioning scales with clinical factors such as age, obesity, setting, hormonal issue, family history, and marital status. The results of the current study highlighted a significant difference (p ≥ 0.05) in the quality of life of women with respect to all of the indicators. The results of the present study concluded poor quality of life among women with ovarian cancer in Pakistan. The lowest quality of life score was observed in hormonal problems followed by peripheral neuropathy, whereas the attitude to disease or treatment was found positive. Cancer care should be extended beyond primary treatment to include long-term care that addresses physical, psychosocial, and emotional factors that influence survivor’s quality of life throughout their lifetime.


BMJ Open ◽  
2022 ◽  
Vol 12 (1) ◽  
pp. e051896
Author(s):  
Uma Mariappen ◽  
Kah Teik Chew ◽  
Ani Amelia Zainuddin ◽  
Zaleha Abdullah Mahdy ◽  
Nur Azurah Abdul Ghani ◽  
...  

ObjectiveTo describe the prevalence of menstrual problems (heavy menses bleeding, dysmenorrhoea and oligomenorrhoea) and its impact towards quality of life among adolescents in Klang Valley, Malaysia.DesignCross-sectional study.SettingAdolescent girls at secondary schools in the Klang Valley, Malaysia.Population729 adolescents aged between 13 and 18 years.MethodA questionnaire survey using Menorrhagia Questionnaire and Paediatric Quality of Life-Teen Report Ages 13–18 (PedsQL).Main outcome measuresSelf reports of menstrual bleeding patterns, morbidities and effect on quality of life.ResultsThe prevalence of menstrual problems among adolescents was 63.9% in the Klang Valley. Adolescents with menstrual problems had significant lower mean total score of PedsQL (70.23±13.53 vs 76.36±14.93, p=0.001), physical health summary score (74.10±16.83 vs 79.00±15.86, p<0.001) and psychosocial health summary score (68.05±14.27 vs 73.21±13.09, p=0.001) compared with those without menstrual problem. Adolescents experiencing heavy menses bleeding had the lowest physical and emotional function. Those with oligomenorrhoea had the lowest social function, whereas those with dysmenorrhoea had the lowest school function. Cigarette smoking, alcohol and medical illness had lower health-related quality of life, whereas taking oral contraceptive pills for menstrual problems was associated with higher scores in these adolescents.ConclusionMenstrual problems among adolescents have a significant impact on their quality of life. It is probably wise to screen them at the school level, to identify those with low functional scores and to refer them for proper management at a tertiary adolescent gynaecology centre.


2021 ◽  
Vol 11 (1) ◽  
Author(s):  
Roberto Damian Pacheco Pinto ◽  
Ricardo Yuji Abe ◽  
Flávia Cid Gomes ◽  
Paulo Rodolfo Tagliari Barbisan ◽  
Alexandre Fattah Martini ◽  
...  

AbstractTo assess the quality of life of keratoconus patients using the Keratoconus Outcomes Research Questionnaire (KORQ), translated and validated in Portuguese language. The KORQ is the only validated keratoconus specific questionnaire and has a high rating for its psychometric properties. This cross-sectional study enrolled 100 keratoconus patients from a tertiary referral eye hospital between April 2018 and June 2019. Associations between age, sex, allergic conjunctivitis, keratoconus stage, best-corrected visual acuity (BCVA), maximum simulated keratometry (Kmax), steep keratometry (K2), pachymetry, treatments performed, hydrops, and KORQ scores were evaluated using univariate (Wilcoxon test and the Kruskal Wallis test) and multivariate linear regression with stepwise backward modeling. Lower KORQ scores are associated with better quality of life, whereas, higher scores are associated with greater impairment of functional activities and symptoms. Among the 100 patients, mild, moderate, and severe keratoconus were observed in 15%, 46% and 39% of participants, respectively. Univariate analysis showed lower function scores values, with male sex (p < 0.05) and both functional and symptom scores were significantly associated with BCVA < 0.3 (LogMAR) (p < 0.05). Multivariate analysis indicated significantly lower functional scores in individuals with BCVA < 0.3 (LogMAR) (p < 0.001) and those with a history of crosslinking treatment (p = 0.022), while symptom scores were only significantly associated with only BCVA < 0.3 (LogMAR) (p < 0.001). In patients with keratoconus, BCVA in the better eye and history of crosslinkig were factors associated with better quality of life scores using the KORQ.


2020 ◽  
Author(s):  
Svetlana Vladislavovna Doubova ◽  
Eduardo Terreros-Muñoz ◽  
Nancy Delgado-Lòpez ◽  
Efreen Horacio Montaño-Figueroa ◽  
Claudia Infante-Castañeda ◽  
...  

Abstract Background: In Mexico, patients with hematologic malignancies (HMs) are characterized by being at high risk and advanced stages at diagnosis and by having a low cure rate; yet information on their experiences with health care and health-related quality of life (HRQL) is scarce. We aimed to evaluate experiences with health care and HRQL of patients with HMs and the association between these patient-reported measures. Methods: We conducted a cross-sectional survey in two public oncology hospitals in Mexico City. The study included outpatient cancer patients aged ≥18 years with a diagnosis of leukemia, lymphoma, or multiple myeloma. We used a patient-centered quality of cancer care questionnaire to assess patient experiences with receiving 1) timely care; 2) clear information; 3) information for treatment decision-making; 4) care to address biopsychosocial needs; and 5) respectful and coordinated care. We applied the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30) to measure HRQL. We performed a multiple linear regression to evaluate the association between patient-reported experiences (independent variables) and the QLQ-C30 summary score (dependent variable). Results: Of the 515 participating HM patients, 46.6% had lymphoma, 34% leukemia, and 19.4% multiple myeloma; 70.9% were at advanced stages or at high risk. Additionally, 15.1% had anxiety and 12.8% had depression. Over one third (35.9%) reported receiving clear information, 28.5% timely care, 20.6% information for treatment decision-making, 23.7% care that addressed their biopsychosocial needs, and 31% respectful and coordinated care. The mean QLQ-C30 summary score was 71.9 points. Timely care, clear information, and care that addresses biopsychosocial needs were associated with higher HRQL. Conclusions: Health care services for HM patients at public oncology hospitals in Mexico need improvement. Notably, providing timely care, clear information, and care that addresses patients’ biopsychosocial needs can increase the likelihood of better HRQL. Health care providers should measure and improve the experiences of HM patients with health care.


2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Kou Kitabayashi ◽  
Suguru Yamamoto ◽  
Yumi Katano ◽  
Kayoko Giustini ◽  
Isei Ei ◽  
...  

Abstract Background Locomotive syndrome (LS) is defined as impairment of mobility function. This study aimed to clarify LS and its association with quality of life in hemodialysis patients. Methods This is a cross-sectional study. The subjects were chronic kidney disease patients undergoing maintenance hemodialysis treatment. LS was assessed using two physical tests (two-step test, stand-up test) and one self-reported test (Geriatric Locomotive Function Scale-25). LS has two stages of severity; the beginning of the decline in mobility function is known as Locomo stage 1, and the progression of the decline of mobility function is known as Locomo stage 2. We used SF-36 to assess quality of life and examined their relationships with the Locomo stages. Chi-square test, Kruskal-Wallis test, Jonckheere-Terpstra test, and Mantel-Haenszel test were used for analysis. Multiple linear regression was used to model the cross-sectional association of Locomo stages with each component and summary score of SF-36. Results A total of 76 hemodialysis patients were included. The number of subjects with Locomo stage 1 and stage 2 were 19 (25%) and 53 (70%), respectively, while only four (5%) subjects did not have mobility dysfunction. Each component and summary score of the SF-36 for physical function, role emotional, physical component summary, and mental component summary were significantly associated with Locomo stages. Conclusion A high prevalence and severity of LS in hemodialysis patients was found, and the severity was associated with quality of life.


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