Implementation and validation of a digital registration system for midface and orbital reconstruction in Iran

This study evaluated the utility of self-reported quality of life (QOL) metrics in predicting mortality among all-comers with renal cell carcinoma (RCC) and externally tested the findings in a registry of patients with small renal masses. The Surveillance, Epidemiology, and End Results-Medicare Health Outcomes Survey (SEER-MHOS) captured QOL metrics composed of mental component summary (MCS) and physical component summary (PCS) scores. Regression models assessed associations of MCS and PCS with all-cause, RCC-specific, and non-RCC-specific mortality. Harrell's concordance statistic (the C-index) and the Akaike information criterion (AIC) determined predictive accuracy and parsimony, respectively. Findings were tested in the prospective Delayed Intervention and Surveillance for Small Renal Masses (DISSRM) registry. In SEER-MHOS, 1494 patients had a median age of 73.4 years and a median follow-up time of 5.6 years. Each additional MCS and PCS point reduced the hazard of all-cause mortality by 1.3% (95% CI, 0.981-0.993; P < .001) and 2.3% (95% CI, 0.971-0.984; P < .001), respectively. Models with QOL metrics demonstrated higher predictive accuracy (C-index, 72.3% vs 70.1%) and parsimony (AIC, 9376.5 vs 9454.5) than models without QOL metrics. QOL metrics exerted a greater effect on non-RCC-specific mortality than RCC-specific mortality. External testing in the DISSRM registry confirmed these findings with similar results for all-cause mortality. Models with self-reported QOL metrics predicted all-cause mortality in patients with RCC with higher accuracy and parsimony than those without QOL metrics. Physical health was a stronger predictor of mortality than mental health. The findings support the incorporation of QOL metrics into prognostic models and patient counseling for RCC.

Quality of Life and Self-Esteem for Children With Urinary Urge Incontinence and Voiding Postponement

The importance of quality of life issues in health care practice and research is steadily growing. This growing interest fits into the definition of health as proposed by the World Health Organization (WHO) in 1948 (1). The WHO defines health as 'a state of complete physical, mental and social well-being and not merely the absence of disease and infirmity'. The attention to health-related quality of life is reflected in the increase in the use of quality-of-life evaluation as a technique of clinical research since 1973, when only five articles listed 'quality of life' as a reference key word in the Medline data base; during the subsequent five-year periods there were 195, 273, 490, and 1252 such articles (2). Also in the field of allergy it has been recognized that allergic disease comprise more than the classical signs and symptoms being part of physical disorders such as allergic rhinitis, asthma and the atopic eczema/dermatitis syndrome (AEDS) (3). In the last decades an increasing effort has been made to understand the socioeconomic burden of atopic disease in terms of effects on health-related quality of life (HRQL) and healthcare costs. It has been acknowledged in several consensus reports that rhinitis and asthma are associated with impairments in the patients' functioning in day-to-day life at home, at work and at school 4-8). With the introduction of questionnaires designed to measure asthma- 9-11) and rhinitis-associated impairments of quality of life (12) it is clear that patients may be bothered by sleep disorders, emotional problems, impairment in activities and social functioning. Also, in general terms, patients with asthma (13) and allergic rhinitis (14) are impaired in their physical and mental functioning, including vitality and the perception of general health. From daily medical practice it can be easily understood that AEDS has a major impact on HRQL. In a way, the use of questionnaires focused on skin disease 15-17) formally confirms this association. Quality of life, QOL, has divergent meanings for different people. Also, HRQL may be considered as ill-defined. More agreement has been reached about the four domains of QOL which are considered to be important: 1) physical status and functional abilities; 2) psychological status and well-being; 3) social functioning; 4) economic and/or vocational status and factors ( 18 ). As the true quality of life value cannot be measured directly, researchers and clinicians have to resort to series of questions (items) to measure this construct indirectly. Combinations of items yield scores referring to physical, mental and social domains. An HRQL instrument must meet several criteria. It should address each component (symptom, condition) that is important to the patient. Attributes of an instrument are described in Table 1. It will be clear that the construction of quality of life questionnaires is a complex task, drawing from the fields of clinimetrics, psychometrics and clinical decision-making (2). Differences in approach, for instance item selection using factor analysis vs the impact method which select items that are most frequently perceived as important by patients -- yields different questionnaires (19). In general two types of instruments, generic and specific, have been used in allergy research. Generic questionnaires measure physical, psychological and social domains in all health conditions irrespective of the underlying disease. A frequently used generic instrument is the Medical Outcomes Survey Short Form 36 (SF-36) (20). The SF-36 was developed as part of the Medical Outcomes Study and analyzes health status using 36 questions to measure nine different health dimensions. It has been used to characterize patients with asthma. Bousquet (13) compared the FEV1 and a clinical score of asthma severity for 252 asthmatic patients. There was a significant positive correlation between all nine quality of life domains of the SF-36 and the clinical score of Aas. Eight of the nine domains also correlated with the FEV1. Also in perennial rhinitis there was a significant impairment in eight of nine QOL dimensions in patients compared with healthy subjects (14). Furthermore, the SF-36 is used to evaluate the effects of a nonsedating antihistamine on quality of life. In this study all of the nine quality of life dimensions improved significantly after one and six weeks of cetirizine treatment compared with placebo (21). Other generic instruments that have been used in allergy research are the Sickness Impact Profile (SIP) (22) and the Nottingham Health Profile (NHP) (23). The 136 items in 12 categories of the SIP describe activities of everyday living. This instrument has been used to evaluate the effect of salmeterol on asthma (24). Salmeterol led to significant improvements over salbutamol on virtually all clinical outcomes. Although all four quality of life instruments used in this study showed the same trend in favor of salmeterol, only the disease-specific Asthma Quality of Life Questionnaire (AQLQ) and the Rating Scale utilities showed significantly greater improvement on salmeterol than on salbutamol. In severe AEDS it was shown, using the SIP, that cyclosporin improves quality of life significantly (25). In particular, the SIP has been used for comparison with disease-specific instruments (24, 26-28). The NHP, the only generic instrument derived entirely from lay people, has been used to validate a disease-specific instrument for patients with dermatitis and psoriasis (29). In asthma the NHP was not able to capture clinical improvement by treatment with pulmonary steroids (30). The latter observations underline the disadvantage that the generic instruments miss depth and therefore may not be responsive enough to detect changes in general health states in spite of important changes in disease-related problems (26). The advantage of generic instruments, however, is that the burden of illness across different disorders and patient populations can be compared. In a comparison between asthma and epilepsy the major finding was that children with epilepsy had a relatively more compromised quality of life in the psychological, social, and school domains (31. In contrast, children with asthma had a more compromised quality of life in the physical domain. These findings suggested that attention simply to seizure control in the clinical setting will not address the full range of quality of life problems in children with epilepsy. Specific instruments have been designed by asking patients what kind of problems they experience from their disease. Both the frequency and the importance of impairments are measured by means of the questionnaires. These instruments have the advantage that they describe the disease-associated problems of the patients. As stated above, they seem to be more responsive to changes in HRQL than do the generic instruments. Several instruments for patients with asthma have been developed. The Asthma Quality of Life Questionnaire of Juniper is focused on symptoms, emotions, exposure to environmental stimuli, and activity limitation (32). Modifications of this questionnaire have been published recently (33, 34). When using HRQL outcome in clinical trials, the question arises whether a change in HRQL is of clinical importance. For the AQLQ, which uses a seven-point scale, the minimal important difference of quality of life score per item is considered to be very close to 0.5 (35). A change of 1.0 in the score represents a moderate change and a change in score of greater than 2.0 represents a large change in HRQL. The minimal important difference as described by Juniper is based upon patient opinions. Measures such as the standardized response mean or the effect size can be used to standardize changes. These measures are based solely upon the distribution of the observed data, in particular upon the variance (36). Recently, it has been shown that both the SF-36 and AQLQ were able to characterize a group of patients with moderate asthma very well, whereas the AQLQ domains were found to have the best discriminative properties (37. The Asthma Quality of Life Questionnaire of Marks captures breathlessness, physical restrictions, mood disturbance and concerns for health (38). St. George's Respiratory Questionnaire (11) is designed for patients with asthma and chronic obstructive pulmonary disorder COPD. It can be applied in both reversible and fixed airway obstruction. In contrast to other questionnaires, the Living with Asthma Questionnaire (10) does not include impairments experienced as a direct consequence of asthma symptomatology. Other instruments are presented in Table 2. The properties of the most frequently used questionnaire are described in Table 3. Specific instruments have been developed for children and caregivers (Table 2). In addition, questionnaires have been constructed for different age-groups of patients with rhinitis (12, 39-41). A simple practical questionnaire technique for routine clinical use, the Dermatology Life Quality Index (DLQI) has been introduced to characterize patients with skin disorders (15). This instrument has been used to compare patients with psoriasis and dermatitis (42). Also versions for children are available: the Children's Dermatology Life Quality Index (CDLQI) and the Infant's Dermatology Life Quality Index (IDLQI) (16). Other questionnaires are the Skindex (43) the Dermatology-Specific Quality of Life (DSQL) (17) and the patient-generated Dermatology Quality of Life Scales (DQOLS) (44). Recently, a questionnaire has been developed to measure HRQL in patients with allergy to insect stings. Subsequently, this instrument has been used in the evaluation of venom immunotherapy (45). It appeared that venom immunotherapy resulted in a statistically and clinically significant improvement in HRQL. Both in clinical practice and in research physicians and investigators rely on physiological and objective measures, whenever possible. However in asthma an increase in FEV1 or a decrease in PC20 histamine or methacholine may occur without any improvement experienced by the patient. Medical intervention may improve physiologic measures, whereas for instance side-effects of drugs or the cumbersome aspects of subcutaneous immunotherapy may unfavorably influence day-to-day life and compliance with treatment. It has been put forward that the classical outcome variables may only partially characterize the disease of the patient. From that point of view it has been advocated to measure HRQL along with the conventional clinical indices (46). In line with this reasoning is the weak association between classical asthma measures and the outcome of HRQL questionnaires. Comparison between de AQLQ of Marks with asthma symptoms and lung function variables revealed that a change in AQLQ score was weakly correlated with change in symptom score (r = 0.37, 95% CI 0.04–0.64) and change in BHR (r = 0.38, 95% CI 0.06–0.64). The association with change in peak flow variability was weak (r = 0.12, 95% CI 0.26–0.47) (27). Similar observations have been reported by others 47-50). An interesting study shows that the mere presence of respiratory symptoms or a (gradually) reduced lung function is insufficient reason for patients to seek medical help. Subjects are more likely to consult their general practitioner once their quality of everyday life is affected or they experience variability in lung function (51). Also, rhinitis related quality of life appears to be moderately correlated to the more classical outcome variables used in clinical trials, such as daily symptom scores and nasal hyperreactivity (52). Another argument to use quality of life instruments lies in the headstart with respect to the knowledge of their validation, reliability and responsiveness compared to the common symptom scores or visual analogue scores (VAS) scales used at clinical trials. In the field of nasal allergy, validation or standardization of symptom scores has rarely been the subject of research. In asthma, even quite recently introduced measures, such as the number of symptom-free days, merit more attention in terms of standardization and validation (53). Other reasons to assess quality of life are conceivable. Measurement of quality of life can also be useful for screening purposes or for evaluation of therapy. Quality of life may be a determinant of effectiveness or efficacy of treatment. Moreover, its assessment might be relevant to striving for optimal decision-making. As the perception of patients is clearly important in the management of disease and patient compliance (Fig. 1), measurement of this 'dimension' by HRQL questionnaires in clinical trials may be justified. The emphasis on quality of life has sometimes resulted in a routine inclusion of HRQL questionnaires in clinical trials. The inclusion of such an instrument is valuable only if the changes can be interpreted by clinicians and contributes to optimal medical decision-making. In an editorial, criticism has been directed to the routine inclusion of such instruments when the structure of the evaluation and its rationale appears ill-defined (54). A model representing the relationships between clinical aspects of therapy, HRQL and factors influencing HRQL (adapted from Cramer and Spilker (17)). Generally in clinical trials the effect of treatment or intervention on HRQL runs parallel with the effect on conventional medical outcome measures. However, in some studies differences can be found. In a study evaluating the combined effect of steroids and antihistamines no differences were demonstrated between patients treated with antihistamine and steroids vs steroids alone in terms of quality of life, whereas for some patient-rated symptoms the combination turned out to be superior (55). In a large multicenter study comparing budesonide and fluticasone it was found that both drugs were equally effective in suppressing symptoms (56), although budesonide had a better effect on general quality of life (57). This might indicate that patients perceive differences not captured by conventional symptom scores. The reverse situation, i.e. significant effects on classical outcomes (symptom scores, medication use, peak flow or FEV1) without important change in two generic and two specific HRQL measures has been described in a study on the effect of formoterol, a long-acting α2-agonist, in mild to moderate asthmatic patients (58). The latter discrepancies can be explained by a limited performance of HRQL measures in mild asthmatic patients. Alternatively, it is possible that the minor changes in symptom scores and lung function due to the intervention are not perceived by patients as relevant. Moreover, patients with a chronic condition may adapt themselves to their disease. The strength of HRQL questionnaires, that is the patient-centred approach, is also one of its weaknesses. Perceptions of quality of life experienced by persons may shift in time. It is easy to understand that a dramatic personal accident or a serious disease will not only cause deterioration in quality of life but will eventually also influence the patient's values and internal standards. For instance, in a study of quality of life after radiotherapy for laryngeal cancer, a temporary deterioration of physical functioning and symptoms was reported, mostly caused by side-effects of treatment. Despite physical deterioration, there was an improvement of emotional functioning and mood after treatment, probably as a result of psychological adaptation and coping processes (59). It is possible also that in less dramatic circumstances, disease and treatments will induce shifts in perception due to changes in the patient's values. Such subjective changes in patients' perception are known as response shift. Socioeconomic status is an additional important independent factor influencing HRQL. In a recent study with asthmatic patients it was shown that socioeconomic status attributes to HRQL. More importantly, in this study it was difficult to separate out the unique effects of socioeconomic status and race/ethnicity (60). Recently, a significant relationship between the mental health of children with asthma and family functioning has been shown (61). These findings suggest that the domains comprising the HRQL of children with asthma are related to both disease and non-disease factors. Psychological functioning influences the burden of a specific disease. A study designed to assess the effects of depressive symptoms on asthma patients' reports of functional status and health-related quality of life revealed that asthma patients with more depressive symptoms reported worse health-related quality of life than asthma patients with similar disease activity, but fewer depressive symptoms (62). Interestingly, these findings were seen not only in generic (SF-36) but also in specific (AQLQ) instruments. This means that a disease-specific instrument may be also influenced by phenomena such as fear and depression. Finally, patients may either intentionally or unconsciously mask their symptoms or trivialize their diseases. They may tend to ignore or discount those problems which they believe are unrelated to their illness. Others may tend to give socially desirable answers. Response shifts and illusory mental health (63) are not easily captured with HRQL instruments, but they will certainly influence the outcome of a clinical trial, when HRQL is chosen as the primary endpoint. In summary, one has to realize that the translation of clinical effects of treatment into perceived and reported changes in quality of life finds a place at the integration level of the patient and this is, in a way, a black box which is not easy to assess (Fig. 1). For these reasons it is strongly recommended to use HRQL outcome measures in parallel with conventional physiological outcome measures. Asthma, allergic rhinitis and AEDS often coexist. The question to what extent concomitant allergic disease affects quality of life has infrequently been addressed. In a recent study the SF-36 questionnaire from 850 subjects recruited in two French centers participating in the European Community Respiratory Health Survey was evaluated. Both asthma and allergic rhinitis were associated with impairment in quality of life. However, 78% of asthmatics also had allergic rhinitis. Subjects with allergic rhinitis but not asthma were more likely to report problems with social activities, difficulties with daily activities as a result of emotional problems, and low mental well-being than subjects with neither asthma nor rhinitis. Patients with both asthma and allergic rhinitis experienced more physical limitations than patients with allergic rhinitis alone, but no difference was found between these two groups for concepts related to social/mental health (64). In another study focusing on asthma, rhinitis and AEDS, comprising 325 subjects allergic to house dust mites, it was found that patients did show impaired quality of life compared to irrespective of the of the atopic Patients with the of asthma did out in terms of physical In addition, asthma symptoms with a visual had a major effect on social functioning, emotional functioning and disorders, in patients with AEDS, appeared to be associated with physical functioning, social functioning, mental health and general health It is not only concomitant atopic disease that has an impact on quality of life. such as and and nasal may patients with rhinitis and asthma. the SF-36 and a quality of life measure it has been shown that HRQL is impaired and that may improve quality of life for patients that is a other specific instruments such as the Index and the have been The impact of on social life in children during the four of life is not easily can be by use of a specific which measures the quality of life is a chronic disease of the respiratory which is frequently associated with respiratory compared the HRQL in patients with nasal with those of patients with perennial rhinitis and healthy It appeared that nasal impaired HRQL more than perennial allergic rhinitis The impairment of HRQL was greater when nasal was associated with asthma In addition, of nasal symptoms, and pulmonary function were after the evaluation in patients with nasal These demonstrated that nasal treatment either with nasal steroids or significantly improved both nasal symptoms and QOL without significant changes in pulmonary may a if the or is in one particular disease. A recent study the effects of on the of QOL measures an analysis of data from clinical trials with asthma, and The study suggest that conditions significantly and patients' scores on generic QOL measures and of treatment whereas their influence on disease-specific QOL scores and of treatment effect is although not These findings have significant practical for the of true treatment control of and the of QOL trials. 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Hepatitis C treatment and quality of life – You can’t always get what you want, but you might get what you need

Responsiveness of Vision-Specific and General Quality of Life Metrics to Ocular and Systemic Events in Patients with Uveitis

Determinants of Quality of Life for Patients With Kidney Stones

Health-related quality of life metrics evaluate treatments in ways that matter to patients, so are often included in randomised clinical trials (hereafter trials). Multimorbidity, where individuals have 2 or more conditions, is negatively associated with quality of life. However, whether multimorbidity predicts change over time or modifies treatment effects for quality of life is unknown. Therefore, clinicians and guideline developers are uncertain about the applicability of trial findings to people with multimorbidity. We examined whether comorbidity count (higher counts indicating greater multimorbidity) (i) is associated with quality of life at baseline; (ii) predicts change in quality of life over time; and/or (iii) modifies treatment effects on quality of life. Included trials were registered on the United States trials registry for selected index medical conditions and drug classes, phase 2/3, 3 or 4, had ≥300 participants, a nonrestrictive upper age limit, and were available on 1 of 2 trial repositories on 21 November 2016 and 18 May 2018, respectively. Of 124 meeting these criteria, 56 trials (33,421 participants, 16 index conditions, and 23 drug classes) collected a generic quality of life outcome measure (35 EuroQol-5 dimension (EQ-5D), 31 36-item short form survey (SF-36) with 10 collecting both). Blinding and completeness of follow up were examined for each trial. Using trials where individual participant data (IPD) was available from 2 repositories, a comorbidity count was calculated from medical history and/or prescriptions data. Linear regressions were fitted for the association between comorbidity count and (i) quality of life at baseline; (ii) change in quality of life during trial follow up; and (iii) treatment effects on quality of life. These results were then combined in Bayesian linear models. Posterior samples were summarised via the mean, 2.5th and 97.5th percentiles as credible intervals (95% CI) and via the proportion with values less than 0 as the probability (PBayes) of a negative association. All results are in standardised units (obtained by dividing the EQ-5D/SF-36 estimates by published population standard deviations). Per additional comorbidity, adjusting for age and sex, across all index conditions and treatment comparisons, comorbidity count was associated with lower quality of life at baseline and with a decline in quality of life over time (EQ-5D -0.02 [95% CI -0.03 to -0.01], PBayes > 0.999). Associations were similar, but with wider 95% CIs crossing the null for SF-36-PCS and SF-36-MCS (-0.05 [-0.10 to 0.01], PBayes = 0.956 and -0.05 [-0.10 to 0.01], PBayes = 0.966, respectively). Importantly, there was no evidence of any interaction between comorbidity count and treatment efficacy for either EQ-5D or SF-36 (EQ-5D -0.0035 [95% CI -0.0153 to -0.0065], PBayes = 0.746; SF-36-MCS (-0.0111 [95% CI -0.0647 to 0.0416], PBayes = 0.70 and SF-36-PCS -0.0092 [95% CI -0.0758 to 0.0476], PBayes = 0.631. Treatment effects on quality of life did not differ by multimorbidity (measured via a comorbidity count) at baseline-for the medical conditions studied, types and severity of comorbidities and level of quality of life at baseline, suggesting that evidence from clinical trials is likely to be applicable to settings with (at least modestly) higher levels of comorbidity. A prespecified protocol was registered on PROSPERO (CRD42018048202).

Patients undergoing mastectomy with immediate implant-based or autologous free-flap breast reconstruction from 2008 to 2020 were reviewed. These patients were categorized by revisions (0-1, 2-3, and 4+) and surveyed on QoL metrics using BREAST-Q and Was It Worth It? (WIWI) questionnaires. BREAST-Q QoL, satisfaction, and WIWI metrics between revision groups were evaluated. Among 252 patients, a total of 150 patients (60%) underwent zero to one revisions, 72 patients (28%) underwent two to three revisions, and 30 patients (12%) underwent four or more revisions. Median follow-up was 6 years (range, 1-11 years). BREAST-Q satisfaction among patients with four or more revisions was significantly lower (P = 0.03), while core QoL domains (chest physical, psychosocial, and sexual well-being) did not significantly differ. Analysis of unplanned reoperations due to complications and breast satisfaction showed no significant difference in QoL scores between groups (P = 0.08). Regarding WIWI QoL metrics, four or more revisions were associated with a higher rate of worse QoL (P = 0.035) and worse overall experience (P = 0.001). Most patients in all revision groups felt it was worthwhile to undergo breast reconstruction (86%), would choose breast reconstruction again (83%), and would recommend breast reconstruction to others (79%). Overall, a majority of patients undergoing revisions after breast reconstruction still have a worthwhile experience. Although reoperations after breast reconstruction do not significantly impact long-term BREAST-Q QoL domains, patients undergoing four or more revisions have significantly lower breast satisfaction, worse QoL, and a postoperative experience worse than expected.

Health-Related Quality of Life following Fractionated Stereotactic Radiosurgery for Large Brain Metastases Resection Cavities on a Phase I/II Trial

Background: Peripheral arterial disease (PAD) is associated with a significant morbidity and mortality. In addition to physical factors, patient’s quality of life (QOL) i.e. individual’s physical health, psychological state, level of independence, social relationships, and their relationship to salient features of their environment also influence on post-operative outcome and there by long term survival after surgery. Health related quality of life (HRQOL) is the extent to which one’s usual or expected physical, emotional and social well-being are affected by a medical condition or its treatment. The purpose of this study was to compere the health-related quality of life before and after revascularization following PAD and to identify the relationship with post-operative outcome following revascularization.Methods: Cases were divided into two groups according to presence and absence of ulceration in foot. Those patients having claudication with ulceration were enrolled in group A and those having claudication without ulceration were enrolled in group B. Data were collected from both groups preoperatively and during follow up at 1 month and 3 months by interviewing the patient according to SF-36. Results: Two groups with preoperative poorer HRQOL (n=25) or optimum HRQOL (n=25) were compared. Postoperative outcome was found poor in Group A compered to Group B. In both groups, there was little improvement in quality of life after 1 month of surgery. In Group A QOL improved a little between 1 to 3 months postoperatively. But in Group B, there was significant improvement of postoperative QOL between 1 and 3 months. Overall, Group A patients had preoperative symptoms more prominent and their postoperative outcome was also poor.Conclusions: Those patients who had preoperative optimum quality of life had better postoperative outcome. From this study it can be concluded that quality of life can be used as a predictor of postoperative outcome in peripheral arterial disease patients.

Health-related quality of life (HRQoL) is known to be an important prognostic indicator and clinical endpoint for patients with hepatocellular carcinoma (HCC). However, the correlation of the Barcelona Clinic Liver Cancer (BCLC) stage with HRQoL in HCC has not been previously studied. We examined the relationship between BCLC stage, Child-Pugh (CP) score, and Eastern Cooperative Oncology Group (ECOG) performance status on HRQoL for patients who presented at a multidisciplinary liver cancer clinic. HRQoL was assessed using the Functional Assessment of Cancer Therapy-Hepatobiliary (FACT-Hep) questionnaire. Fifty-one patients met our inclusion criteria. The FACT-Hep total and subscales showed no significant association with BCLC stages (p = 0.224). Patients with CP B had significantly more impairment in FACT-Hep than patients with CP A. These data indicate that in patients with HCC, impaired liver function is associated with reduced quality of life, whereas the BCLC stage poorly correlates with quality of life metrics. Impairment of quality of life is common in HCC patients and further studies are warranted to determine the impact of early supportive interventions on HRQoL and survival outcomes.

Congenital myelomeningocele, or spina bifida (SB), is the predominant congenital anomaly of the central nervous system. Beyond its implications on neonatal mortality, SB impacts the long-term quality of life in affected children. This study sought to investigate the health-related quality of life (HRQoL) among children with SB treated at Ethiopia's leading pediatric neurosurgical facility. Set at Zewditu Memorial Hospital in Addis Ababa, Ethiopia, this hospital-based cross-sectional study spanned from June 30 to September 30, 2022. It incorporated 232 children, using data gathered through interviewer-led questionnaires. The HRQoL was measured using the PedsQL 4.0, a 23-item generic scale. The study's participants had a median age of 5years (interquartile range=3 to 6years). The aggregate mean scores on the PedsQL 4.0 tallied at 68.59±18.01. The lowest scores emerged from queries on school participation, whereas physical and emotional functioning registered the highest scores. Through multiple regression analyses, variables such as family income, monthly household income, number of children, and the presence of a neurogenic bladder showed strong association with HRQoL. This study fills a gap in the literature providing information on the HRQoL and its associated factors for children with SB in low-resourced settings. We champion the proactive integration of quality-of-life metrics into neurosurgical care policy and practice. Given the enduring consequences of SB, interventions honing the HRQoL can steer children toward realizing their intrinsic and enhance societal participation and contribution.

OBJECTIVE: Surgery is usually the standard treatment for intracranial meningiomas in patients of all ages. The incidence of meningiomas increases progressively with age. Considering the fact, that the median age for the diagnosis of meningiomas is 65 years, general health condition, morbidity and mortality rates as well as the postoperative outcome regarding quality of life should carefully be noted in advance. It remains still a controversial topic, if meningioma resection should be performed in higher ages under weighing up the risks and benefits of the intervention. There have actually been only few studies which have investigated the health related quality of life in the postoperative course. The results of these studies are yet controversial and there is a need for further investigations regarding the postoperative health related long term quality of life. Furthermore to this point of time there have been no studies that compare the impairments of the HRQOL after meningioma resection in different age groups. METHODS: We analyzed the health related quality of life of 133 elderly patients ranging from 55 to 84 years who underwent surgical meningioma resection between 2004 and 2010. 50 of them were male and 83 female (3M: 5F). The median age was 67.3 ± 7.4 years. The average time between surgery and interview was 3.8 ± 2.5 years. Six different age groups each compromising 5 years of age were established. Patients were interviewed with the SF36 questionnaire and compared to general population. RESULTS: We found significant lower levels of physical function, vitality, social role function, mental health, general health perception and significant higher levels of pain when comparing the older groups (especially from 75 to 79 years) with younger patients from 55 to 59 years of age. The physical component summary showed a steadily and stepwise decline of levels from younger patients to older patients even with significant differences. CONCLUSION: In total, former studies have shown that meningioma surgery in elderly patients can be performed under higher but acceptable morbidity and mortality rates compared to younger patients. However, our findings suggest that meningioma resection affects long term quality of life especially in higher ages and should be a substantial part of the surgery decision making process in advance.

Risk-reducing mastectomy (RRM) is the most efficient form of breast cancer (BC) risk reduction in BRCA1/2 pathogenic variant (pV) carriers. However, this intervention in physical integrity is associated with significant morbidity. We assessed long-term perception of satisfaction and health-related quality of life (QoL) after bilateral RRM and reconstruction using the validated BREAST-Q. We searched the prospective database of the Center for Hereditary Breast and Ovarian Cancer Cologne for previvors and survivors who underwent bilateral RRM from 1994 to 2015 and evaluated the results of their BREAST-Q scores. The study enrolled 43 previvors and 90 survivors after a mean follow-up of 46.3 ± 45.3 months after RRM. Satisfaction and QoL were independent of the technique of RRM or type of reconstruction but depended on the time of RRM. Compared to survivors, previvors had significantly higher mean satisfaction scores in their psychosocial, sexual, and physical well-being (chest) in both modules. Among previvors and survivors, higher psychological well-being correlated with a higher satisfaction with information and higher satisfaction with outcome. As psychological well-being correlated with satisfaction with information and outcome, we developed decision aids to improve shared decision making and long-term satisfaction with the decision and the postoperative outcome.

This study investigated the relationship between quality of life (QoL) and health-related quality of life (HRQoL) and assessed factors other than health that contribute to differences in QoL in young males with Duchenne muscular dystrophy (DMD). In this cross-sectional study, QoL and HRQoL measures were completed by 98 parents and 85 children. The Quality of My Life (QoML) questionnaire measured QoL and HRQoL as single-items, and the Pediatric Quality of Life 4.0 Generic Core (PedsQL) questionnaire was used as a multidimensional measure of HRQoL. Simple regression was used to examine the relationship between single-item measures of HRQoL and QoL. Multivariable regression was used to investigate factors that may contribute to difference in QoL and HRQoL. While ratings of QoL and HRQoL were significantly correlated with one another, HRQoL only accounted for 21% and 44% of the variability in QoL by child- and parent-reports respectively. None of the factors measured contributed ratings of the child's QoL to be much higher than HRQoL. QoL and HRQoL are related but distinct constructs as rated by children with DMD and their parents. Further research is needed to elucidate factors outside HRQoL that contribute to QoL. Quality of life (QoL) and health-related quality of life are distinct concepts rated by young males with Duchenne muscular dystrophy (DMD) and their parents. Factors outside of 'health' contribute to overall QoL in the paediatric population with DMD. This article's abstract has been translated into Spanish and Portuguese. Follow the links from the abstract to view the translations.