Neurodevelopment and Health-Related Quality of Life in Infants Born with Gastroschisis: A 6-Year Retrospective French Study

Introduction Quantify quality of life (QoL) outcomes in gastroschisis children is little assessed. The primary objective was to describe the long-term outcome of newborns with gastroschisis treated in three tertiary care hospitals of France in terms of neurodevelopment and QoL. Materials and Methods The study reported was a cross-sectional, descriptive multicentric retrospective study assessing the outcome of newborns with gastroschisis, born between January 1, 2009, and December 31, 2014, treated at two large and French level III neonatal intensive care units. Long-term outcome data were assessed by questionnaires sent to the infants' parents. Questionnaires explored global health, neurological development, and quality of life (overall assessment including socio-economic and medical), Age & Stages Questionnaire, infants' quality of life (KIDSCREEN), and quality of parents' life (General Questionnaire Short Form-36). Results In this study, 50% of the survivor's families answered the assessment form (n = 33). The average follow-up age was 40 months, ranging from 8 months to 6 years. Cases of simple gastroschisis more often had a normal score for “communication” (p = 0.033), while patients who received morphine for a longer duration had significantly lower scores for the items “communication” and “problem resolving” (p = 0.024 and p = 0.011, respectively). Children's QoL was significantly lower for patients with gestational age younger than 36 weeks (p = 0.023) and for patients born following “fetal cause delivery” (p = 0.022). Parents had a significantly higher physical composite score if their child underwent primary closure (p = 0.012). Conclusion Our analyses confirm the idea that cases of complex gastroschisis and preterm delivery may lead to poorer outcome. Such hindsight (40 months in mean) allowed for an interesting assessment of development long after the patient's initial hospitalization and to confirm these results, a standardized neuropsychological evaluation of patients should be done when at least 6 years old. An accurate assessment of the social environment and its impact on the development and QoL of children will be fundamental to avoid selection bias.

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Long-term outcome and quality of life after CNS cavernoma resection: eloquent vs. non-eloquent areas

Neurosurgical Review ◽

10.1007/s10143-021-01572-8 ◽

2021 ◽

Author(s):

Loay Shoubash ◽

Jörg Baldauf ◽

Marc Matthes ◽

Michael Kirsch ◽

Matthias Rath ◽

...

Keyword(s):

Quality Of Life ◽

Short Form ◽

Preoperative Evaluation ◽

Patient Counseling ◽

Surgical Morbidity ◽

Term Outcome ◽

Long Term Outcome

AbstractThe aim of this study is to analyze the long-term quality of life after surgery of cavernoma. A monocentric retrospective study was conducted on 69 patients with cavernoma treated microsurgically between 2000 and 2016. The eloquence was adopted from Spetzler-Martin definition. A most recent follow-up was elicited between 2017 and 2019, in which the quality of life (QoL) was evaluated with the Short Form-12 questionnaire (SF12). Forty-one lesions were in eloquent group (EG), 22 in non-eloquent group (NEG), 3 in orbit, and 3 in the spinal cord. Postoperative worsening of the modified Rankin scale (mRS) occurred in 19.5% of cases in EG versus 4.5% in NEG. After a mean follow-up of 6.5 years (SD 4.6), the neurological status was better or unchanged compared to baseline in 85.4% of EG and 100% of NEG. Regarding QoL assessment of 44 patients (EG n = 27, NEG n = 14) attended the last follow-up. Patients after eloquent cavernoma resection reported a non-inferior QoL in most SF12 domains (except for physical role) compared to NEG. However, they reported general health perception inferior to norms, which was affected by the limited physical and emotional roles. At a late follow-up, the surgical morbidity was transient in the NEG and mostly recovered in the EG. The QoL comparison between eloquent and non-eloquent cavernomas created interesting and new data after prolonged follow-up. These results add value for decision-making as well as patient counseling for future encountered cases. Preoperative evaluation of QoL is recommended for future studies to assess QoL dynamics.

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Long-Term Outcome after Dynamic Graciloplasty for Treatment of Persistent Fecal Incontinence in Patients with Anorectal Malformations

European Journal of Pediatric Surgery ◽

10.1055/s-0038-1641599 ◽

2018 ◽

Vol 29 (03) ◽

pp. 276-281

Author(s):

Johan Danielson ◽

Urban Karlbom ◽

Tomas Wester ◽

Wilhelm Graf

Keyword(s):

Quality Of Life ◽

Fecal Incontinence ◽

Short Form ◽

Anorectal Malformations ◽

Dynamic Graciloplasty ◽

Term Outcome ◽

Long Term Outcome

Purpose Dynamic graciloplasty (DGP) has been used to treat severe fecal incontinence since the 1980s. Previous studies have shown an inferior outcome in patients with anorectal malformations (ARMs). Our experience has been that DGP has been appreciated by ARM -patients. The objective of the study was to evaluate the long-term outcome of DGP in our patients with ARM compared with patients with other underlying conditions. Materials and Methods Twenty-three patients operated with DGP at our institution from 1996 to 2010 were sent validated bowel function and quality of life questionnaires. Eighteen of 23 responded. Seven had ARM and 11 had other etiologies of fecal incontinence. The mean follow-up time was 11.6 years (range, 5–17). Results Four of 7 of the patients with ARM and 8 of 11 of patients with other etiologies used their implants at follow-up. The Miller incontinence score was slightly higher for patients with ARMs, but they had less constipation and higher Fecal Incontinence Quality of Life (FIQL)- and 36-Item Short Form Health Survey (SF-36) scores. None of the differences were statistically significant. Conclusion This study cannot confirm earlier reports in which DGP has an inferior outcome in patients with ARM. We therefore believe that the procedure should remain a treatment option for selected patients.

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Long-Term Outcome and Quality of Life After Cavernoma Resection: Eloquent vs. Non-Eloquent Areas.

10.21203/rs.3.rs-173091/v1 ◽

2021 ◽

Author(s):

Loay Shoubash ◽

Jörg Baldauf ◽

Marc Matthes ◽

Michael Kirsch ◽

Matthias Rath ◽

...

Keyword(s):

Quality Of Life ◽

General Health ◽

Short Form ◽

Surgical Morbidity ◽

Term Outcome ◽

Long Term Outcome ◽

Physical Role

Abstract Objective: To analyze the long-term quality of life after surgery of cavernoma.Methods: A monocentric retrospective study was conducted on 69 patients with cavernoma treated microsurgically between 2000 and 2016. The eloquence was adopted from Spetzler-Martin definition. A most recent follow-up was elicited between 2017 and 2019, in which the quality of life (QoL) was evaluated with the Short Form-12 questionnaire (SF12).Results: 41 lesions were in eloquent group (EG), 22 in non-eloquent group (NEG), 3 in orbit and 3 in the spinal cord. Postoperative worsening of the modified Rankin scale (mRS) occurred in 19.5% of cases in EG versus 4.5% in NEG. After a mean follow-up of 6.5 years, the neurological status was better or unchanged compared to baseline in 85.4% of EG and 100% of NEG. 44 patients (EG n =27, NEG n = 14) attended the last follow-up. The EG had mostly comparable QoL results matched to NEG except for the physical role (RP). The study population when compared to the norms, did well on only half of the parameters of SF12. Yet, the general health (GH), vitality, physical (RP) and emotional roles (RE) were significantly inferior.Conclusion: At a late follow-up, the surgical morbidity was transient in the NEG and mostly recovered in the EG. Regarding QoL, Patients after eloquent cavernoma resection reported a non-inferior QoL in most SF12 domains (except for physical role) compared to NEG. However, they reported general health perception inferior to norms, which was affected by the limited physical and emotional roles.

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Long-term Outcome after Vegetative State due to Near-Drowning and Quality of Life of the Families

Neuropediatrics ◽

10.1055/s-0032-1307178 ◽

2012 ◽

Vol 43 (02) ◽

Author(s):

G Kluger ◽

A Kirsch ◽

M Hessenauer ◽

M Granel ◽

A Müller ◽

...

Keyword(s):

Quality Of Life ◽

Vegetative State ◽

Term Outcome ◽

Long Term Outcome ◽

Near Drowning

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Long term outcome of functional independence and quality of life after traumatic SCI in Germany

Spinal Cord ◽

10.1038/s41393-021-00659-9 ◽

2021 ◽

Author(s):

Florian Möller ◽

Rüdiger Rupp ◽

Norbert Weidner ◽

Christoph Gutenbrunner ◽

Yorck B. Kalke ◽

...

Keyword(s):

Quality Of Life ◽

Spinal Cord ◽

Spinal Cord Injury ◽

Functional Independence ◽

Term Outcome ◽

Long Term Outcome ◽

Cord Injury ◽

Over Time

Abstract Study design Multicenter observational study. Objective To describe the long-term outcome of functional independence and quality of life (QoL) for individuals with traumatic and ischemic SCI beyond the first year after injury. Setting A multicenter study in Germany. Methods Participants of the European multicenter study about spinal cord injury (EMSCI) of three German SCI centers were included and followed over time by the German spinal cord injury cohort study (GerSCI). Individuals’ most recent spinal cord independence measure (SCIM) scores assessed by a clinician were followed up by a self-report (SCIM-SR) and correlated to selected items of the WHO short survey of quality of life (WHO-QoL-BREF). Results Data for 359 individuals were obtained. The average time passed the last clinical SCIM examination was 81.47 (SD 51.70) months. In total, 187 of the 359 received questionnaires contained a completely evaluable SCIM-SR. SCIM scores remained stable with the exception of reported management of bladder and bowel resulting in a slight decrease of SCIM-SR of −2.45 points (SD 16.81). SCIM-SR scores showed a significant correlation with the selected items of the WHO-QoL-BREF (p < 0.01) with moderate to strong influence. Conclusion SCIM score stability over time suggests a successful transfer of acquired independence skills obtained during primary rehabilitation into the community setting paralleled by positively related QoL measurements but bladder and bowel management may need special attention.

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Affective Temperaments and Illness Severity in Patients with Bipolar Disorder

Medicina ◽

10.3390/medicina57010054 ◽

2021 ◽

Vol 57 (1) ◽

pp. 54

Author(s):

Mario Luciano ◽

Luca Steardo ◽

Gaia Sampogna ◽

Vito Caivano ◽

Carmen Ciampi ◽

...

Keyword(s):

Quality Of Life ◽

Bipolar Disorder ◽

Protective Factor ◽

Psychiatric Symptoms ◽

Control Group ◽

Term Outcome ◽

Long Term Outcome ◽

Affective Temperaments

Background and objectives: Bipolar disorder (BD) is one of the most burdensome psychiatric illnesses, being associated with a negative long-term outcome and the highest suicide rate. Although affective temperaments can impact on BD long-term outcome, their role remains poorly investigated. The aims of the present study are to describe the clinical characteristics of patients with BD more frequently associated with the different affective temperaments and to assess the relation between affective temperaments and severity of clinical picture in a sample of patients with BD. Materials and Methods: A total of 199 patients have been recruited in the outpatients units of two university sites. Patients’ psychiatric symptoms, affective temperaments, and quality of life were investigated through validated assessment instruments. Results: Predominant cyclothymic and irritable temperaments are associated to higher number of relapses, poorer quality of life, higher rates of aggressive behaviors, and suicide attempts. Conversely, the predominant hyperthymic disposition was a protective factor for several outcome measures, including relapse rate, severity of anxiety, depressive and manic symptoms, suicidality, and earlier age at onset. One limitationo of the present study is that the recruitment took place in two university sites; therefore, our findings cannot be fully generalized to the whole community of BD patients. Other limitations are the lack of a control group and the cross-sectional design of the study. Conclusions: The early identification of affective temperaments can help clinicians to identify those BD patients who are more likely to show a poor long-term outcome. An early screening of affective temperaments can be useful to develop targeted integrated pharmacological and psychosocial interventions.

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Long-term Outcome After Survival of a Cardiac Arrest: A Prospective Longitudinal Cohort Study

Neurorehabilitation and Neural Repair ◽

10.1177/1545968317697032 ◽

2017 ◽

Vol 31 (6) ◽

pp. 530-539 ◽

Cited By ~ 20

Author(s):

Véronique R. M. Moulaert ◽

Caroline M. van Heugten ◽

Ton P. M. Gorgels ◽

Derick T. Wade ◽

Jeanine A. Verbunt

Keyword(s):

Quality Of Life ◽

Cardiac Arrest ◽

Cohort Study ◽

Anxiety And Depression ◽

Term Outcome ◽

Long Term Outcome ◽

Prospective Longitudinal ◽

Prospective Longitudinal Cohort

Background. A cardiac arrest can lead to hypoxic brain injury, which can affect all levels of functioning. Objective. To investigate 1-year outcome and the pattern of recovery after surviving a cardiac arrest. Methods. This was a multicenter, prospective longitudinal cohort study with 1 year of follow-up (measurements 2 weeks, 3 months, 1 year). On function level, physical/cardiac function (New York Heart Association Classification), cognition (Cognitive Log [Cog-log], Cognitive Failures Questionnaire), emotional functioning (Hospital Anxiety and Depression Scale, Impact of Event Scale), and fatigue (Fatigue Severity Scale) were assessed. In addition, level of activities (Frenchay Activities Index, FAI), participation (Community Integration Questionnaire [CIQ] and return to work), and quality of life (EuroQol 5D, EuroQol Visual Analogue Scale, SF-36, Quality of Life after Brain Injury) were measured. Results. In this cohort, 141 cardiac arrest survivors were included. At 1 year, 14 (13%) survivors scored below cutoff on the Cog-log. Both anxiety and depression were present in 16 (15%) survivors, 29 (28%) experienced posttraumatic stress symptoms and 55 (52%), severe fatigue. Scores on the FAI and the CIQ were, on average, respectively 96% and 92% of the prearrest scores. Of those previously working, 41 (72%) had returned to work. Most recovery of cognitive function and quality of life occurred within the first 3 months, with further improvement on some domains of quality of life up to 12 months. Conclusions. Overall, long-term outcome in terms of activities, participation, and quality of life after cardiac arrest is reassuring. Nevertheless, fatigue is common; problems with cognition and emotions occur; and return to work can be at risk.

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