Multidisciplinary Follow-up Research Articles

Monitoring to improve quality of life in women with bleeding disorders

Abstract Systematic structures to understand the incidence and prevalence of bleeding disorders in women and girls are in place in some countries and becoming more robust, though there is still room for improvement. More co-ordinated data gathering is providing new insights into the diagnosis and treatment of girls with bleeding disorders and demonstrating clear deficits in care compared with boys that can have important implications around puberty. Recognition and recording of female symptoms such as heavy menstrual bleeding (HMB) may lag behind that of symptoms with a greater perception bias, such as joint bleeds, and affect quality of life and wellbeing. Addressing inequity of symptom recognition and recording is needed to drive appropriate and timely treatment interventions. New symptom tools can empower patients to differentiate normal from abnormal bleeding so they can seek and receive help. Greater awareness among health care professionals (HCPs) of women's bleeding disorders and the establishment of referral networks for diagnosis and treatment, with multidisciplinary assessment and follow-up, are still needed.

Liraglutide in the treatment of obesity : a multidisciplinary approach

Liraglutide, which has been prescribed for several years for the treatment of type 2 diabetes, is now proposed for the management of patients with BMI between 28 and 35 kg/m2 in the presence of metabolic comorbidity or BMI ≥ 35 kg/m2. Its reimbursement by the health insurance is conditioned on weight loss results and time limited. Careful preparation of the patient and his commitment to lifestyle changes are essential for the success and good tolerance of the treatment. The introduction of this treatment requires a multidisciplinary follow-up to ensure optimal results. The place of liraglutide in the pharmacopeia of obesity, a chronic disease that requires long-term treatment, should be clarified.

A new challenge: post-COVID syndrome in teenagers

Post-COVID syndrome (or long COVID) is a set of persistent symptoms occurring after a documented SARS-CoV-2 infection. Children and adolescents are also affected, with similar symptoms than adults. To date there is no clinical or biological parameter allowing to confirm the diagnosis, which relies on the presence of typical symptoms associated with a suggestive temporality, in the absence of any other explanation. These persistent symptoms can have a strong impact on the quality of life and schooling. In our specialized consultation for pediatric post-COVID syndrome, we offer a global and multidisciplinary follow-up to patients and their families, supporting them progressively resuming physical and mental activity, and pursuing school attendance to avoid dropout.

Programa de inmersión en Medicina del Estilo de Vida y sus efectos sobre los factores de riesgo cardiovasculares

Introduction: Cardiovascular diseases are the leading cause of death worldwide and are associated with increased morbidity and mortality by COVID-19. Lifestyle Medicine immersion programs consist of a residential internship that performs a multidisciplinary professional follow-up. Objective: To evaluate the effect of the residential lifestyle medicine program on risk factors for cardiovascular disease: weight, blood pressure and glycemia. Methods: Longitudinal, comparative study, with intervention of a Lifestyle Medicine Program. Retrospective data from 2019-2021 of patients who had completed the intervention for 14 days were used. This consisted of a comprehensive follow-up: medical, nutritional, psychological, physical and spiritual of the patients. Results: Of the 53 patients evaluated, 26 underwent the intervention before the pandemic, who were hospitalized with the main reason for weight loss 34.62%. Of the patients who underwent the intervention within the pandemic (N=27), the main reason for hospitalization was for treatment of chronic diseases 33.33%. Glycemia: Initial M=186.64, SD=81.73; Final M=119.93, SD=35.02. Mean reduction of 66.71 mg/dl, statistically significant (t=4.3460, p=0.0008). SBP: Initial M=127.76, SD=16.36; Final M=115.21, SD=14.87. Mean reduction of 12.55 mmHg, statistically significant (t=4.7048, p=0.0001). Conclusions: The effect of the intervention was significant in the cardiovascular risk factors evaluated: weight, glycemia and systolic blood pressure. It was possible to reduce the risk factors for cardiovascular disease with intensive lifestyle changes. In times of pandemic, the relevance of lifestyle medicine intervention is emphasized.

INFLAMMATORY BOWEL DISEASE, SOCIAL IMPACTS AND QUALITY OF LIFE: A LITERATURE REVIEW

Inflammatory bowel disease (IBD) is a continuous total or partial inflammation of the digestive tract, with Crohn's disease and ulcerative colitis being the most common forms of presentation. The most frequent signs and symptoms consist of abdominal pain, fatigue, bloody stools, diarrhea, weight loss, and vomiting, and there may be extra-intestinal manifestations. In developed countries, an increased incidence of IBD has been observed, particularly in young people of working age, impacting their quality of life as well as physical, social and psychological aspects. This is because once diagnosed with IBD, individuals encounter coping challenges, difficulties in acceptance, and lifestyle changes. Therefore, we sought to analyze the social impacts and quality of life of patients diagnosed with Inflammatory Bowel Disease. A literature review was conducted in PubMed, SciELO, BVS and LILACS databases, 20 articles met the established criteria, of which 10 were selected to compose the study. Articles published between 2016 and 2021 and relevant to the topic were included, and those that did not meet the inclusion criteria or did not comprise primary data, and were duplicates were excluded. The analyzed studies showed that there was a reduction in quality of life in patients with IBD, presenting as main factors associated with this restriction the disease activity, socioeconomic factors, and the patient's age. It was denoted that this negative aspect causes limitations, mainly in the biopsychosocial performance of patients with this condition. Therefore, it is noteworthy that biopsychosocial impacts result from the manifestation of Inflammatory Bowel Disease, which demonstrates the need for a qualified and humanized multidisciplinary follow-up during the evolution of these patients.

Early Hospital Discharge Following PCI for Patients With STEMI

BackgroundRegional heart attack services have improved clinical outcomes following ST-segment elevation myocardial infarction (STEMI) by facilitating early reperfusion by primary percutaneous coronary intervention (PCI). Early discharge after primary PCI is welcomed by patients and increases efficiency of health care. ObjectivesThis study aimed to assess the safety and feasibility of a novel early hospital discharge pathway for low-risk STEMI patients. MethodsBetween March 2020 and June 2021, 600 patients who were deemed at low risk for early major adverse cardiovascular events (MACE) were selected for inclusion in the pathway and were successfully discharged in <48 hours. Patients were reviewed by a structured telephone follow-up at 48 hours after discharge by a cardiac rehabilitation nurse and underwent a virtual follow-up at 2, 6, and 8 weeks and at 3 months. ResultsThe median length of hospital stay was 24.6 hours (interquartile range [IQR]: 22.7-30.0 hours) (prepathway median: 65.9 hours [IQR: 48.1-120.2 hours]). After discharge, all patients were contacted, with none lost to follow-up. During median follow-up of 271 days (IQR: 88-318 days), there were 2 deaths (0.33%), both caused by coronavirus disease 2019 (>30 days after discharge), with 0% cardiovascular mortality and MACE rates of 1.2%. This finding compared favorably with a historical group of 700 patients meeting pathway criteria who remained in the hospital for >48 hours (>48-hour control group) (mortality, 0.7%; MACE, 1.9%) both in unadjusted and propensity-matched analyses. ConclusionsSelected low-risk patients can be discharged safely following successful primary PCI by using a pathway that is supported by a structured, multidisciplinary virtual follow-up schedule.

Splenic artery aneurysms and extrahepatic portal hypertension during pregnancy

Clinical case demonstrates successful treatment of a pregnant woman, who had multiple giant splenic artery aneurysms with a high risk of spontaneous rupture. Pregnancy proceeded along with hereditary thrombophilia, thrombosis and cavernous transformation of the vena cava, extrahepatic portal hypertension, esophageal and gastric varices II–III. The surgical and obstetric tactics, surgical intervention, appropriate salvage and multidisciplinary pregnancy follow-up ensured a successful Cesarean delivery at 38 weeks, saving the life of the child and mother.

Kidney graft function before pregnancy as a predictor of graft, maternal and fetal outcomes in pregnant renal transplant recipients.

Maternal and fetal complications can occur in pregnant kidney transplant recipients. Since these are high-risk pregnancies, they require a multidisciplinary follow-up to prematurely detect adverse events. Identifying factors that would affect fetal, maternal and graft outcomes is essential to further stratify the risk of pregnant kidney transplant recipients. All pregnancies in kidney transplant recipients followed in a single center for 30 years were included. Data included previous transplant information and blood and urine tests performed before pregnancy. Impact of graft function on fetal, maternal and graft outcomes was evaluated. There were 41 pregnancies among 34 patients. Mean gestational age of 35±3weeks. Caesarean section was performed in 69.4% of patients. Five pregnancies were unsuccessful (12.2%). Four patients suffered an acute graft dysfunction (9.8%) and 12 (29.3%) had a serious maternal hypertensive disorder (preeclampsia, eclampsia or HELLP syndrome). Graft function before pregnancy showed significant correlation with adverse outcomes. A proteinuria >669mg/g, serum creatinine >1.75mg/dL and glomerular filtration rate <36.2mL/min/1.73m2 before pregnancy were correlated to graft dysfunction during pregnancy. Similar values of proteinuria were also associated with a risk of maternal hypertensive disorders and pregnancy failure. Therefore, in patients with proteinuria and graft dysfunction, follow-up should be stricter to quickly detect complications.

23 Pulmonary Hypertension Associated with Bronchopulmonary Dysplasia and Neurodevelopmental Outcomes: A Systematic Review and Meta-Analysis

Abstract Primary Subject area Neonatal-Perinatal Medicine Background Pulmonary Hypertension (PH) is estimated to occur in 1 in 4 infants with Bronchopulmonary Dysplasia (BPD). The impact of PH in infants with BPD on their neurodevelopmental (ND) outcomes is uncertain. Objectives This systematic review aims to evaluate whether PH in infants with BPD is associated with ND delay. Design/Methods A systematic literature search was performed to identify studies that reported ND outcomes of infants with BPD (based on NIH definition) and PH (based on echocardiographic findings of PH at 36 weeks PMA). The primary outcome was ND delay in infants with pulmonary hypertension associated with BPD compared with BPD alone. Standardized developmental tests evaluated ND outcomes at 18-24 months corrected age (CA) and three years of age. Quality assessment of the studies was done using the Newcastle-Ottawa Quality Assessment for Cohort studies. Results Three retrospective cohort studies met the inclusion criteria. Two studies reported ND outcomes based on Bayley Scales of Infant and Toddler Development-III Edition in cognitive, language, and motor domains at 18-24 months CA (Table 1 and Figure 1). One study reported outcomes at 3 years, including overall developmental delay (Kyoto Scale of Psychological Development [KSPD] scores &amp;lt; 70) and cerebral palsy. The quality of all 3 studies was rated between good, fair, and poor. Pooled data from the 2 studies reporting outcomes at 18-24 months showed no difference between the 2 infant groups for Bayley cognitive score &amp;lt; 85 (Odds ratio [OR]: 3.78; 95% CI 0.87-16.52), Bayley language score &amp;lt; 85 (OR: 1.19; 95% CI0.57-2.49), and Bayley motor score &amp;lt; 85 (OR: 2.04; 95% CI 0.89-4.67). At 3 years of age, children in the BPD-PH group had an increased risk of developmental delay (DQ &amp;lt; 70 in all areas) compared with the BPD group (OR: 4.37; 95% CI 1.16-16.46), but no difference in the risk of cerebral palsy (OR: 0.57; 95%0.03-12.39). Conclusion PH in BPD is not associated with a developmental delay compared to BPD alone at 18-24 months CA. However, a single study showed infants in BPD-PH had delayed development at 3 years of age. A large prospective cohort study with longer multidisciplinary follow-up is required to confirm this.

Secondary Surgery in Metopic Craniosynostosis: Outcomes in a Tertiary Care Craniofacial Center in Australia.

Metopic craniosynostosis is a condition in which the metopic suture is prematurely fused. Trigonocephaly and hypotelorism are the major abnormal findings associated with synostosis. Fronto-orbital advancement with cranial remodelling procedure is the widely practised method for correction of the deformities. Previously, a few studies have shown a low incidence of secondary raised intracranial pressure after the primary surgery. Thus, we reviewed our database to investigate the outcomes of metopic craniosynostosis treatment between 1999 and 2020 in Cleft and Craniofacial South Australia. One hundred twelve patients (77 males and 35 females) with metopic synostosis were operated. The mean age of primary surgery was 11.1 months (range 2.8-131.7 months). Ten patients (9%) who had secondary raised intracranial pressure underwent secondary surgery. Among those, the mean age of primary and secondary surgery were 5.4 and 57.1 months, respectively. Syndromic patients were significantly revealed to have a higher incidence of secondary raised intracranial pressure. There were three patients (2.7%) who had other secondary procedures (hardware removal and aesthetic contouring procedures). This cohort identified a higher incidence of secondary raised intracranial pressure requiring secondary surgery than previous studies. Syndromic patients were significantly related to secondary raised intracranial pressure. The patients who had raised intracranial pressure tended to have primary correction at younger age. Long-term multidisciplinary follow-up is mandatory. The demand for secondary surgery for metalwork complications or cosmetic contouring is uncommon.

Pregnancy after liver transplantation following idiopathic subacute liver failure: A multidisciplinary Approach

Liver transplantation (LT) is the definitive treatment for end stage liver disease. Liver cancer, viral hepatitis and alcohol related liver diseases are the common causes for transplantation. The outlook for pregnancy in post-transplant patient is generally good although they are considered higher risk than the general population. &nbsp;As far back as 1978, the first successful pregnancy in a liver transplant patient was reported with as many as 12 pregnancies per year occurring in liver transplant recipients in the UK. We present a 27-year old primigravida who had liver transplant when she was 9 years old due to idiopathic subacute liver failure. She conceived spontaneously and had an unremarkable multidisciplinary antenatal care with induction of labour and vaginal delivery at 38 weeks gestation with good outcomes. This case highlights the importance of multidisciplinary team (MDT) management and follow-up in liver transplant patients.

Underestimated sleep breathing disorders in a cohort of patients admitted to post-COVID-19 follow-up program: A single center experience

Sleep Breathing Disorders (SBD) have been suggested as potential risk factors for critical COVID-19. We explored the prevalence of undiagnosed SBD in a cohort of >200 adult patients admitted to the multidisciplinary follow-up program for COVID-19 at Parma Hospital. Functional outcomes and prognosis will be compared between obstructive sleep apnea (OSA) versus non-OSA patients.

Amyotrophic lateral sclerosis progression in the year of the COVID-19 pandemic

During the COVID-19 pandemic and the related lockdowns, the outpatient follow-up visits for patients with chronic neurological diseases have been suspended. In this context, the management of people affected by Amyotrophic Lateral Sclerosis (ALS) has become highly complicated, leaving patients without the standard multidisciplinary follow-up. We aimed to analyze the impact of the COVID-19 lockdown (CL) on ALS disease progression with this study.

Weight loss as a cause of superior mesenteric artery syndrome

Introduction and objective: Superior mesenteric artery syndrome (SMAS) is a rare condition in pediatric age, often presenting with non-specific gastrointestinal symptoms. The aim of this report was to highlight the importance of considering/excluding this diagnosis.Case description: A 17-year-old female presented with slowly progressing epigastralgia, heartburn, early satiety, nausea and sporadic vomiting with one and a half years of evolution. She had lost 13% of her weight in the previous six months. On physical examination, the girl complained of pain on epigastrium palpation, with no further changes. Laboratory tests were normal. Esophageal, gastric and duodenal transit (EGDT) revealed a vertically elongated stomach, with the greater curvature projecting towards the pelvic cavity and a slight delay in gastric emptying. Abdominal computed tomography scan confirmed the diagnosis of SMAS and a conservative approach with a hypercaloric fractionated diet was initiated. The girl maintained multidisciplinary follow-up (Nutrition, Pediatrics and Pedopsychiatry), with marked improvement and without requiring surgical intervention. Comments: Although rare, SMAS should be considered after exclusion of the most frequent underlying causes of persistent non-specific gastrointestinal symptoms.

Accelerated Early Progression of Amyotrophic Lateral Sclerosis over the COVID-19 Pandemic.

During the COVID-19 pandemic and the related lockdowns, outpatient follow-up visits for patients with chronic neurological diseases have been suspended. Managing people affected by amyotrophic lateral sclerosis (ALS) has become highly complicated, leaving patients without the standard multidisciplinary follow-up. This study aimed to analyze the impact of the COVID-19 lockdown on ALS disease progression. We compared the clinical data and progression in the first year following diagnosis for patients who received ALS diagnosis during 2020 (G20, N = 34), comparing it with a group of diagnosed in 2018 (G18, N = 31). Both groups received a comparable multidisciplinary model of care in our Tertiary Expert ALS Centre, Novara, Italy. The monthly rate of ALSFRS-R decline during the lockdown was significantly increased in G20 compared to G18 (1.52 ± 2.69 vs. 0.76 ± 0.56; p-value: 0.005). In G20, 47% required non-invasive ventilation (vs. 32% of G18). Similarly, in G20, 35% of patients died vs. 19% of patients in G18 (p-value: 0.01). All results were corrected for gender, age, site of onset, and diagnostic delay. Several factors can be implicated in making ALS more severe, with a faster progression, such as reduced medical evaluations and the possibility of therapeutic changes, social isolation, and rehabilitation therapy suspension.

Novel missense mutation of the TP63 gene in a newborn with Hay-Wells/Ankyloblepharon-Ectodermal defects-Cleft lip/palate (AEC) syndrome: clinical report and follow-up

IntroductionAnkyloblepharon-ectodermal defects-cleft lip/palate (AEC) syndrome, also known as Hay-Wells syndrome, is a rare genetic syndrome with ectodermal dysplasia. About 100 patients have been reported to date. It is associated to a heterozygous mutation of the tumor protein p63 (TP63) gene, located on chromosome 3q28. Typical clinical manifestations include: filiform ankyloblepharon adnatum (congenital adherence of the eyelids), ectodermal abnormalities (sparse and frizzy hair, skin defects, nail alterations, dental changes and hypohidrosis), and cleft lip/palate. Diagnostic suspicion is based on clinical signs and confirmed by genetic testing.Patient’s presentationWe hereby report on a female newborn with erythroderma, thin lamellar desquamations, extensive skin erosions, sparse and wiry hair, filiform ankyloblepharon adnatum, agenesis of the lachrymal puncta, cleft palate and nail dysplasia. Her phenotype was compatible with AEC syndrome. Then, based on the clinical suspicion, sequencing analysis of the TP63 gene was performed, and revealed a de novo novel missense mutation. Eyelids adherence and cleft palate underwent surgical correction, while skin erosions were treated with topical antibiotics/antifungals and emollient/re-epithelizing creams. A surgical reconstruction is presently planned for the agenesis of the lachrymal puncta. The infant currently is 17 months of age and is included in a multidisciplinary follow-up. At present shows growth impairment and mild developmental delay, and typical signs of ectodermal dysplasia with small areas of dermatitis lesions on the scalp, without further abnormalities.ConclusionsOur report underlines the relevance of an early and careful clinical evaluation in neonates with ankyloblefaron, facial dysmorphism, and signs of ectodermal dysplasia. In these cases, the suspicion of AEC syndrome must be promptly raised, and sequencing analysis of TP63 early performed as well. An individualized, multidisciplinary and long-term follow-up should be guaranteed to affected subjects and their families, also to identify associated morbidities and prevent possible serious complications and adverse outcomes.

The Work Ability of People with Mental Illnesses: A Conceptual Analysis.

Continuous employment is an important goal for many people with mental illnesses. However, job retention and absenteeism remain significant problems that deter their attempts at gaining financial independence, expanding interpersonal relationships, and developing self-esteem. Although there is consensus on the necessity of their proactive treatment and social participation, such support is currently underwhelming. Therefore, this study analyzes the conceptual framework for work ability of people with mental illnesses. We performed our investigations using Rodgers’ evolutionary conceptual analysis, targeting literature published from 1978 to 2020. Our search yielded 1420 articles in the Scopus inventory and 199 in PubMed. After exclusions, 13 articles remained. Using the same keywords in Google Scholar, we included 31 articles in our analysis. The attributes of work ability included the ability to self-manage, adaptability, the ability to dedicate oneself to work, and the ability to formulate plans. These were developed through a reiterative process. This study notes the importance of adjusting the work environment according to the patients’ condition. Therefore, the ability to cope with stress and workload, as well as active self-adjustment, are crucial skills that nurses can help develop after assessing the patient’s daily life. Furthermore, they can foster multidisciplinary collaboration and follow-up systems after employment.

Pregnancy Outcome in Women With APECED (APS-1): A Multicenter Study on 43 Females With 83 Pregnancies.

ContextAutoimmune polyendocrinopathy-candidiasis-ectodermal dystrophy (APECED; also known as autoimmune polyendocrine syndrome type 1) has a severe, unpredictable course. Autoimmunity and disease components may affect fertility and predispose to maternal and fetal complications, but pregnancy outcomes remain unknown.ObjectiveTo assess fetal and maternal outcomes and course of clinical APECED manifestations during pregnancy in women with APECED.Design and SettingA multicenter registry-based study including 5 national patient cohorts.Patients321 females with APECED.Main Outcome MeasureNumber of pregnancies, miscarriages, and deliveries.ResultsForty-three patients had altogether 83 pregnancies at median age of 27 years (range, 17–39). Sixty (72%) pregnancies led to a delivery, including 2 stillbirths (2.4%) and 5 (6.0%) preterm livebirths. Miscarriages, induced abortions, and ectopic pregnancies were observed in 14 (17%), 8 (10%), and 1 (1.2%) pregnancies, respectively. Ovum donation resulted in 5 (6.0%) pregnancies. High maternal age, premature ovarian insufficiency, primary adrenal insufficiency, or hypoparathyroidism did not associate with miscarriages. Women with livebirth had, on average, 4 APECED manifestations (range 0-10); 78% had hypoparathyroidism, and 36% had primary adrenal insufficiency. APECED manifestations remained mostly stable during pregnancy, but in 1 case, development of primary adrenal insufficiency led to adrenal crisis and stillbirth. Birth weights were normal in >80% and apart from 1 neonatal death of a preterm baby, no serious perinatal complications occurred.ConclusionsOutcome of pregnancy in women with APECED was generally favorable. However, APECED warrants careful maternal multidisciplinary follow-up from preconceptual care until puerperium.

Energy cost of walking and body composition changes during a 9-month multidisciplinary weight reduction program and 4-month follow-up in adolescents with obesity.

The purpose of the present study was to investigate changes in the energy cost of locomotion during walking (Cw) related to changes in body mass (BM, kg) and body composition in adolescents with obesity. Twenty-six (12 boys and 14 girls) obese adolescents (mean: body mass index, 33.6± 3.7kg·m-2; 42.7± 4.5% fat mass (FM)) followed a 9-month multidisciplinary inpatient weight-reduction program consisting of lifestyle education, moderate energy restriction, and regular physical activity in a specialised institution. At baseline (M0), the end of the 9-month program (M9), and after the 4-month follow-up (M13), oxygen consumption and carbon dioxide production of the standardised activity program were assessed by whole-body indirect calorimetry over 24hours, and body composition was assessed by dual-energy X-ray absorptiometry. At M9, adolescents showed an 18% reduction in BM (p< 0.001) and 40% in total FM, while fat-free mass (kg) remained stable in boys but decreased by ∼6% in girls (p= 0.001). Similarly, the mean Cw decreased by 20% (p< 0.001). At M13, BM, FM, and Cw were slightly higher compared with at M9. In conclusion, moderate energy restriction and regular moderate physical activities improved walking economy, improved exercise tolerance, and induced beneficial changes in the body composition of adolescents with obesity. Novelty: Reduction of FM in the trunk region, and consequently reducing the work carried out by respiratory muscles, contributes to reducing Cw in adolescents with obesity. A lower walking cost can be effective in improving exercise tolerance and quality of life in obese adolescents.

Continuous Multidisciplinary Care for Patients With Orofacial Clefts-Should the Follow-up Interval Depend on the Cleft Entity?

ObjectiveThe multidisciplinary follow-up of patients with cleft lip with or without palate (CL/P) is organized differently in specialized centers worldwide. The aim of this study was to evaluate the different treatment needs of patients with different manifestations of CL/P and to potentially adapt the frequency and timing of checkup examinations accordingly.DesignWe retrospectively analyzed the data of all patients attending the CL/P consultation hour at a tertiary care center between June 2005 and August 2020 (n = 1126). We defined 3 groups of cleft entities: (1) isolated clefts of lip or lip and alveolus (CL/A), (2) isolated clefts of the hard and/or soft palate, and (3) complete clefts of lip, alveolus and palate (CLP). Timing and type of therapy recommendations given by the specialists of different disciplines were analyzed for statistical differences.ResultsPatients with CLP made up the largest group (n = 537), followed by patients with cleft of the soft palate (n = 371) and CL ± A (n = 218). There were significant differences between the groups with regard to type and frequency of treatment recommendations. A therapy was recommended in a high proportion of examinations in all groups at all ages.ConclusionAlthough there are differences between cleft entities, the treatment need of patients with orofacial clefts is generally high during the growth period. Patients with CL/A showed a similarly high treatment demand and should be monitored closely. A close follow-up for patients with diagnosis of CL/P is crucial and measures should be taken to increase participation in follow-up appointments.