Reliability and validity of the Japanese version of the Paediatric Pain Profile for children with severe motor and intellectual disabilities.

Children with severe motor and intellectual disabilities experience chronic pain but cannot communicate verbally. However, no Japanese tool currently exists for assessing pain in this population. This study aimed to develop and evaluate the reliability and validity of a Japanese version of the Paediatric Pain Profile, which is a behavioral rating scale to assess pain in children with severe neurological disabilities. The sample comprised 30 children with severe motor and intellectual disabilities at three hospitals in Japan. Three specialist nurses rated low and high pain video scenes of the children (twice at 1-week intervals) using the Face, Legs, Activity, Cry, Consolability behavioral scale and a translated Japanese version of the Paediatric Pain Profile. On the basis of their ratings, we calculated the internal consistency, test-retest reliability, and intra- and inter-observer reliabilities of the Paediatric Pain Profile. Additionally, we assessed concurrent validity using the Face, Legs, Activity, Cry, Consolability behavioral scale and construct validity using low versus high pain scenes. Both internal consistency (low pain: alpha = 0.735; high pain: alpha = 0.928) and test-retest reliability (r = 0.846) of the Japanese version of the Paediatric Pain Profile were good. Intra-observer reliability was substantial (r = 0.748), whereas inter-observer reliability was only moderate (r = 0.529). However, the concurrent validity with Face, Legs, Activity, Cry, Consolability scores was good (r = 0.629) and construct validity was confirmed (p < 0.001). We confirmed the validity of the Japanese version of the Paediatric Pain Profile, but reliable pain assessment may require repeated ratings by the same person. To accurately assess pain in children with severe motor and intellectual disabilities, healthcare staff must be properly trained and become more skilled in using the Japanese version of the Paediatric Pain Profile

先天性心疾患児のレジリエンスを強化する親へのアプローチプログラム開発と有効性検証

application/pdf本研究は、「レジリエンス」という人の内面の強さを示す心理的特性を理論的基盤とし、継続的に生じる問題をかかえながら成人期へ移行していく先天性心疾患児の「レジリエンス」強化に関わる重要な要素である親へのアプローチプログラムを開発することを目的とした。幼児期から思春期の子どもをもつ親へ、2回のプログラムで介入することで、その有効性を検証し、実践に適用できるプログラムの開発を行った。This research has the theoretical foundation which is called resilience. Children with congenital heart disease will transfer to adulthood with some problems. Their parents have important roles related to promote resilience of children with congenital heart disease. This study aimed to develop a program for parents to promote resilience in children with congenital heart disease, and to intervene in them in two themes. After that, we conducted interviews and questionnaires to verify the effectiveness of the program.2013年度～2016年度科学研究費補助金(基盤研究(C))研究成果報告書2546353

痛み評価尺度Paediatric Pain Profile日本語版の開発

application/pdf本研究は、重症心身障害児など言葉で痛みを伝えられない子どもの慢性疼痛を測定する尺度「Paediatric Pain Profile日本語版」を開発し、その信頼性と妥当性を実証した。さらに、Paediatric Pain Profile日本語版を使用し、重症心身障害児の痛みの代理評価に与える要因として、その子どもをよく知る人はその子どものことを知らない人よりも痛みのスコアを高くつけたという観察者側の要因と、医療依存度の高い低年齢の子どもたちや側弯のある高年齢の子どもたち、そしてGERのある子どもたちの痛みスコアが高くなったという子ども側の要因を明らかにした。In this study, we developed a scale 'Japanese version of the Paediatric Pain Profile' to measure chronic pain in non-verbal children, such as children with severe motor and intellectual disabilities, and demonstrated its reliability and validity. In addition, the impact on the proxy assessments using this scale was that those who were always spending at the child checked higher pain scores. Observers gave high pain scores to younger children who were highly dependent on medical care, older children with scoliosis, and children with GERD.2019年度～2021年度科学研究費補助金(基盤研究(C))研究成果報告書19K1103

Survival outcomes including salvage therapy of adult head and neck para-meningeal rhabdomyosarcoma: a multicenter retrospective study from Japan

Abstract Background Rhabdomyosarcoma is the most common soft tissue sarcoma in children, but rare in adults. Para-meningeal rhabdomyosarcoma in head and neck (PM-HNRMS) is less applicable for surgery due to the anatomic reason. PM-HNRMS has a poor prognosis in children. However, its clinical outcomes remain unclear in adults due to the rarity. Further, there is almost no detailed data about salvage therapy. Methods We retrospectively examined the adult patients with PM-HNRMS treated at institutions belonging to the Kyushu Medical Oncology Group from 2009 to 2022. We evaluated the overall survival (OS) and progression-free survival (PFS) of the patients who received a first-line therapy. We also reviewed the clinical outcomes of patients who progressed against a first-line therapy and received salvage therapy. Results Total 11 patients of PM-HNRMS received a first-line therapy. The characteristics were as follows: median age: 38 years (range 25 – 63 years), histology (alveolar/spindle): 10/1, and risk group (intermediate/high): 7/4. As a first-line therapy, VAC and ARST0431-based regimen was performed in 10 and 1 patients, respectively. During a first-line therapy, definitive radiation for all lesions were performed in seven patients. The median PFS was 14.2 months (95%CI: 6.0 – 25.8 months): 17.1 months (95%CI: 6.0 – not reached (NR)) for patients with stage I-III and 8.5 months (95%CI: 5.2 – 25.8 months) for patients with stage IV. The 1-year and 3-year PFS rates were 54.5% and 11.3% for all patients. Median OS in all patients was 40.8 months (95%CI: 12.1 months–NR): 40.8 months (95%CI: 12.1 – NR) for patients with stage I-III and NR for patients with stage IV. The 5-year OS rate was 48.5% for all patients. Among seven patients who received salvage therapy, three are still alive, two of whom remain disease-free for over 4 years after completion of the last therapy. Those two patients received multi-modal therapy including local therapy for all detected lesions. Conclusion The cure rate of adult PM-HNRMS is low in spite of a first-line therapy in this study. Salvage therapy might prolong the survival in patients who received the multi-modal therapy including local therapy for all detected lesions