Aim: This study aims to reveal the problems faced by families of children with spinal muscular atrophy (SMA), by evaluating their care burden, needs, and expectations. Materials and Methods: The participants were the primary caregivers of 34 children between the ages of 0 and 18 years diagnosed with SMA. Thirteen children were diagnosed with type 1, 13 children with type 2 and 8 children with type 3 SMA. Data on the medical history, functional levels of the participants, and the characteristics of families were collected. The childrens’ parents completed the Family Needs Survey and the Zarit Caregiver Burden Scale. Results: According to the results of the Family Needs Survey, it was found that information was the most common requirement, and this was independent of the level of education. According to the Caregiver Burden Scale, it was recorded that 64.7% of the caregivers were under mild/ moderate burden. While there was a moderate correlation (r = 0.574; P < .001) between the Caregiver Burden Scale and the Family Needs Survey, it was observed that the functional level of the child was not associated with family needs and caregiver burden. Conclusions: Our study suggests that the needs of families of SMA patients, especially related to income level, have changed. The caregivers’ burden is not directly related to the income level or the functional level of the child. Families’ need for information should also be prioritized within the rehabilitation program. Cite this article as: Evkaya Acar A, Karadağ Saygı E, İmamoğlu S, et al. The burden of primary caregivers of spinal muscular atrophy patients and their needs. Turk Arch Pediatr. 2021; 56(4): 366-373.

Introduction: Primary Ciliary Dyskinesia(PCD) is associated with chronic respiratory tract infections. Conventional chest physiotheraphy(CCPT) and vibratory positive expiratory pressure therapy system(Acapella®) are commonly used treatment options for chest physiotherapy. Our aim was to compare the efficacy and safety of CCPT and Acapella by studying the change in pulmonary function regarding the physiotheraphy methods. Material and Method: Fourteen PCD patients were included to the study. Patients were divided into two groups. First group used Acapella for the first three months while second group used CCPT. At the end of the 3 months;study groups switched their physiotherapy methods after a wash-out period for 2 weeks. Respiratory functions were evaluated with LCI and spirometry at the beginning of the study, at the third month, at the end of washout period and at the end of the study. Patients were asked for the preferred method regarding airway clearance. Results: The results of spirometry and LCI of two groups were similar. There was no statistically significant increase in parameters other than PEF in LCI and spirometry results. At the end of the study, patients reported that all of them preferred Acapella. Conclusion: Patient9s respiratory function tests improved with 6-month chest physiotherapy. There was no statistically significant increase in LCI and spirometry results due to small number of patients. Pulmonary rehabilitation in PCD is important to maintain lung functions. Patients preference should be considered in order to increase compliance in chronic patient follow-up.

Lenfödem, lenfatik drenajın bozulması sonucunda proteinden zengin interstisyel sıvının subkutanöz alanda birikmesi ile karakterize kronik ve ilerleyici bir hastalıktır. Lenfatik sistemin konjenital malformasyonu sonucunda primer ya da enfeksiyon, travma, cerrahi gibi nedenlerle edinilmiş tıkanıklık veya sistem bütünlüğünün bozulması sonucunda sekonder olarak açığa çıkabilir. Hastalık, şişlik ve zamanla ülserasyona kadar ilerleyen cilt değişiklikleri ile günlük yaşam aktivitelerinde problemlere yol açarak yaşam kalitesini olumsuz etkiler. Lenfödem tedavisinde erken teşhis ve müdahale önemlidir. Tanı öncelikle hikâye ve klinik bulgulara dayanmakla birlikte, görüntüleme yöntemleri de kullanılabilir. Lenfödem tedavisinde konservatif ve cerrahi yöntemler kullanılır. Konservatif tedaviler aynı zamanda cerrahi tedaviyi tamamlayıcı bir rol üstlenir. Tedavi başarısı, erken teşhis, doğru tedavi yönteminin doğru zamanda uygulanması ve disiplinler arası iş birliği ile ilişkilidir. Bu literatür taraması, periferik lenfödem ve güncel tedavi yöntemleri hakkında bir bakış açısı sunmayı amaçlamaktadır. Ayrıca, lenfödemde konservatif ve cerrahi tedavi yöntemleri hakkında bibliyometrik veri sunarak araştırmacılara katkıda bulunmayı hedeflemektedir.

Background: This study aims to evaluate the effectiveness of application of physiotherapy via remote telerehabilitation in the early postoperative period following thoracic surgery. Methods: Between October 2020 and July 2024, a total of 40 patients (25 males, 15 females; mean age: 57.8±9.6 years; range, 42 to 77 years) who underwent thoracic surgery due to Stage 1A-3B non-small cell lung cancer were included in this randomized-controlled clinical study. The patients were divided into two groups: the telerehabilitation group (TG, n=20) and the control group (CG, n=20). Patients in the TG participated in a teleconference-based exercise program supervised by a physiotherapist, starting the day before surgery and continuing daily until discharge. Patients in the CG received a single preoperative exercise session and an educational brochure. All patients were assessed at five time points: preoperatively, immediately after surgery, prior to discharge, at one to three months post-discharge, and at six months post-discharge. Outcome measures included the duration of intensive care unit stay, total hospital stay, chest drain duration, postoperative complications, inflammatory biomarkers, pain, dyspnea, fatigue, spirometry, and State-Trait Anxiety Inventory (STAI) scores. Results: Both groups had similar baseline characteristics including comorbidities and types of surgery (p>0.05). There were no significant differences in the intensive care unit stay duration (p=0.739), total hospital stay (p=0.311), or chest drain duration (p=0.431) between the groups. However, TG showed significantly lower pain and fatigue levels compared to CG (p<0.05). Conclusion: Telerehabilitation effectively reduced pain and fatigue in patients after thoracic surgery. The lack of significant differences in other outcomes may be attributed to variations in patient compliance. These findings suggest that telerehabilitation can be a valuable alternative to traditional rehabilitation, particularly during pandemic or isolation.