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"ABSTRAKPendekatan integrasi antara terapi paliatif dan perawatan penyakit kronik dan atau mengancam jiwa telah banyak digunakan dalam beberapa tahun terakhir. Hingga saat ini, masih banyak yang beranggapan bahwa terapi paliatif hanya ditujukan untuk pasien dengan penyakit berat yang sudah berada di stadium terminal atau akhir hidupnya, namun pada kenyataannya banyak pasien mendapatkan manfaat dari terapi paliatif sedini mungkin. Penelitian ini merupakan uji klinis acak terkontrol yang bertujuan untuk mengetahui manfaat integrasi terapi paliatif pada pasien anak dengan penyakit keganasan. Pasien terdiri dari anak dengan penyakit keganasan usia 2-18 tahun yang dikonsulkan kepada tim paliatif. Pasien dibagi menjadi dua kelompok secara acak, yakni kelompok kontrol (30 anak) dan kelompok intervensi (30 anak). Intervensi berupa kunjungan rumah, komunikasi dua arah antara tenaga terlatih dengan pasien dan orang tua, dibagi menjadi 6 sesi (1 sesi setiap 2 minggu) yang berfokus pada edukasi penyelesaian masalah, manajemen gejala, perawatan diri sendiri, komunikasi, pembuatan keputusan dan pendampingan rencana perawatan lanjutan. Pasien diikuti dan dilakukan penilaian kualitas hidup dengan kuesioner Pediatric Quality of Life Innitiative (PedsQLTM) modul kanker 3.0, intensitas gejala dinilai dengan Edmonton Symptoms Assesment Score (ESAS), frekuensi kunjungan unit gawat darurat (UGD) pasien anak dengan penyakit keganasan dicatat selama periode penelitian dan dibandingkan dengan sebelum penelitian. Kelompok intervensi memiliki kualitas hidup lebih tinggi bermakna (81,63) dibandingkan kelompok kontrol (62,39), p<0,001. Ranah kualitas hidup yang paling meningkat secara signifikan adalah ranah nyeri, mual, kecemasan prosedur, kecemasan tata laksana, dan khawatir. Intervensi paliatif dapat menurunkan intensitas gangguan tidur (p=0,003) dan anoreksia pada pasien (p<0,001). Intervensi paliatif dapat menurunkan kunjungan UGD sebanyak 4,77 kali pada pasien anak dengan penyakit keganasan (OR 4,77, 95% IK 1,29-17,65; p=0,018).

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ABSTRACTIn these last few years, an integrated approach between palliative care and chronic and/or life-threatening conditions care have been widely used. Many people think that palliative care is only intended for those with end stage of disease or in the end of life period. In fact, many patients had benefit from early palliative integration. This study is aimed to know the role of palliative intervention in child with malignancy. A randomized controlled trial comparing patients who were given palliative care (a 3-month home visit) and those who were not (intervention vs control group) was conducted, each group containing 30 patients. Patients consisted of children with cancer aged 2-18 years old who were consulted to palliative team. A two-way communication between a trained health worker and patients with or without their parents were conducted as the intervention (report by proxy or self-report). Interventions were given in 6 sessions (1 session every 2 weeks) focusing on problems solving education, symptoms management, self-care, communication, decision making, and long-term care plan assistance. In the first and twelfth week of the intervention, all patients were assessed with the Pediatric Quality of Life Inventory (PedsQLTM) questionnaire cancer module 3.0. Symptomps intensity were assessed by Edmonton Symptoms Assesment Score (ESAS). Emergency room admissions from the last 3 months were noted before patients were enrolled in the study. During the follow up period, ER admissions were recorded further. Data was analyzed using bivariate analysis, OR calculations were performed to see the effect of interventions on outcomes in this study. A significant difference of quality of life was found between the two groups with average total score in control group 62.39 and intervention group 81.63 (p<0.001). Most significant increased domains were pain, nausea, procedural anxiety, treatment anxiety, and worry. Intensity of sleep disturbance (p=0.003) and anorexia (p<0.001) were decreased significantly in intervention group. Emergency room admissions were reduced by 4.7 times in intervention group (OR 4.77, 95% CI 1.29-17.65; p=0.018)."

"Penyakit Paru Obstruktif Kronik (PPOK) merupakan penyakit pernapasan kronik yang menjadi salah satu penyebab utama morbiditas dan mortalitas. Penyakit ini bersifat progressif dan irreversible, menjadi beban penyakit baik fisik, psikologi, sosial dan spiritual menyebabkan penurunan kualitas hidup bagi penderitanya. Banyak pasien PPOK yang menerima perawatan paliatif belum memadai. tujuan dari penelitian ini adalah untuk mengidentifikasi hubungan efikasi diri, symptom burden, kecemasan, dukungan sosial dan spiritual dengan kebutuhan perawatan paliatif pada pasien PPOK. Desain penelitian ini adalah cross sectional dengan purposive sampling sebanyak 143 orang. pengumpulan data menggunakan kuesioner dan medical record, kemudian dianalisis dengan statistik deskriptif, uji bivariat dan uji multivariat. Hasil penelitian menunjukkan mayoritas pasien (55,9%) membutuhkan perawatan paliatif, sebagian besar memilikiefikasi diri tinggi (87,4%), symptom burden sedang (72%), kecemasan rendah (92,3%), dukungan sosial tinggi (64,3%) dan spiritual sedang (76,9%). terdapat hubungan yang signifikan efikasi diri, kecemasan dan dukungan sosial dengan kebutuhan perawatan paliatif dengan p value= <0,05, sementara symptom burden dan spiritual menunjukkan hubungan yang tidak signifikan dengan kebutuhan perawatan paliatif dengan p value= >0,05. Berdasarkan hasil uji regresi logistik hubungan yang paling dominan dengan kebutuhan perawatan paliatif adalah dukungan sosial (p=0,020). Rekomendasi dari hasil penelitian ini adalah perawatan paliatif harus diintegrasikan sejak awal pasien terdiagnosa PPOK dan pentingnya edukasi terhadap pasien dan keluarga untuk mendapatkan perawatan dan penatalaksanaan komprehensif sesuai dengan kondisi penyakit.

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Chronic Obstructive Pulmonary Disease (COPD) is a chronic respiratory condition that represent one of the leading causues of morbidity and mortality. This disease is progressive and irreversible, resulting in physical, psychological, social and spiritual burden that lead to a decline in the quality of life ffor those affected. Many COPD patients who receive palliative care do not receive adekuquate treatment. The objective of this study was to identify the relationship between self-effycacy, symptom burden, anxiety, social support and spirituality with the need for palliative care in COPD patients. This study used across-sectional design with purposive sampling, involving 143 participants. Data ware collected using questionare and medical records, and subsequently analyzed using descriptive statistics, bivariate tests and multivariate tests. The findings showed that the mayority of patients (55,9%) required palliative care, most had high self-efficacy (87,4%), moderate symptom burden (72%), low anxiety (92,3%), high social support (64,3%), and moderate spirituality (76,9%). Significant relationship were found between self=efficacy, anxiety and social support with the need for palliative care with p-values <0,05. However, symptom burden and spirituality showed no significant relationship with the need for palliative care, with p-values >0,05. Based on the logistic regression analysis, the most dominant factor influencing the need for palliative car should be integrated from the outset of COPD diagnosis, and it is assential to educate both patients and their families to recieve comprehensive care and management according to the disease's condition."