Pub Date : 2024-12-24DOI: 10.1136/bmjpo-2024-002840
Firehiwot Workneh, Theresa I Chin, Kalkidan Yibeltal, Nebiyou Fasil, Krysten North, Sarah K G Jensen, Workagegnhu Tarekegn Kidane, Mulatu Melese, Sitota Tsegaye, Yoseph Yemane Berhane, Unmesha Roy Paladhi, Betelhem Haimanot Abate, Atsede Teklehaimanot, Tizita Lemma Melka, Stephen Pihl, Winko W An, Fred Van Dyk, Luke C Mullany, Lian V Folger, Sara Cherkerzian, Sonya V Troller-Renfree, Moriah E Thomason, Maria Andersson, Terrie Inder, Charles A Nelson, P Ellen Grant, Parul Christian, Alemayehu Worku, Yemane Berhane, Anne Cc Lee
Introduction: Maternal undernutrition and inflammation in utero may significantly impact the neurodevelopmental potential of offspring. However, few studies have investigated the effects of pregnancy interventions on long-term child growth and development. This study will examine the effects of prenatal nutrition and infection management interventions on long-term growth and neurodevelopmental outcomes of offspring.
Methods: The Enhancing Nutrition and Antenatal Infection Treatment ('ENAT') study (ISRCTN15116516) was a pragmatic, open-label, 2×2 factorial, randomised clinical effectiveness study implemented in 12 rural health centres in Amhara, Ethiopia. The study enrolled 2399 pregnant women who were randomised to receive routine care, an enhanced nutrition package (iron and folic acid, monthly household supply of iodised salt, and micronutrient-fortified balanced energy protein supplement for undernourished women), an enhanced infection management package (genitourinary tract infection screening and treatment, and enhanced deworming), or both packages. In the present Longitudinal Infant Development and Growth study, a subset of 480 children of mothers from ENAT will be recruited equally from each of the four study arms and visited at 12, 18, and 24 months of postnatal age. We will evaluate a range of domains and deploy multiple measures to assess child neurodevelopment, including resting electroencephalography and visual evoked potentials, Hammersmith Infant Neurological Examination, eye-tracking, Bayley Scales of Infant and Toddler Development (Bayley-III), and Magnetic Resonance Imaging (MRI).
Discussion: This study will advance understanding of the impact of nutrition and inflammation in pregnancy on long-term offspring neurodevelopment. This study aims to fill a critical knowledge gap on the benefits of prenatal interventions to promote the health of mothers and their offspring.
Ethics and dissemination: This study was approved by the Institutional Review Boards of Addis Continental Institute of Public Health (ACIPH/IRB/002/2022) and Mass General Brigham (2023P000461). Results will be disseminated to local and international stakeholders.
{"title":"Impact of maternal antenatal nutrition and infection treatment interventions on Longitudinal Infant Development and Growth in rural Ethiopia: protocol of the LIDG child follow-up study.","authors":"Firehiwot Workneh, Theresa I Chin, Kalkidan Yibeltal, Nebiyou Fasil, Krysten North, Sarah K G Jensen, Workagegnhu Tarekegn Kidane, Mulatu Melese, Sitota Tsegaye, Yoseph Yemane Berhane, Unmesha Roy Paladhi, Betelhem Haimanot Abate, Atsede Teklehaimanot, Tizita Lemma Melka, Stephen Pihl, Winko W An, Fred Van Dyk, Luke C Mullany, Lian V Folger, Sara Cherkerzian, Sonya V Troller-Renfree, Moriah E Thomason, Maria Andersson, Terrie Inder, Charles A Nelson, P Ellen Grant, Parul Christian, Alemayehu Worku, Yemane Berhane, Anne Cc Lee","doi":"10.1136/bmjpo-2024-002840","DOIUrl":"10.1136/bmjpo-2024-002840","url":null,"abstract":"<p><strong>Introduction: </strong>Maternal undernutrition and inflammation in utero may significantly impact the neurodevelopmental potential of offspring. However, few studies have investigated the effects of pregnancy interventions on long-term child growth and development. This study will examine the effects of prenatal nutrition and infection management interventions on long-term growth and neurodevelopmental outcomes of offspring.</p><p><strong>Methods: </strong>The Enhancing Nutrition and Antenatal Infection Treatment ('ENAT') study (ISRCTN15116516) was a pragmatic, open-label, 2×2 factorial, randomised clinical effectiveness study implemented in 12 rural health centres in Amhara, Ethiopia. The study enrolled 2399 pregnant women who were randomised to receive routine care, an enhanced nutrition package (iron and folic acid, monthly household supply of iodised salt, and micronutrient-fortified balanced energy protein supplement for undernourished women), an enhanced infection management package (genitourinary tract infection screening and treatment, and enhanced deworming), or both packages. In the present Longitudinal Infant Development and Growth study, a subset of 480 children of mothers from ENAT will be recruited equally from each of the four study arms and visited at 12, 18, and 24 months of postnatal age. We will evaluate a range of domains and deploy multiple measures to assess child neurodevelopment, including resting electroencephalography and visual evoked potentials, Hammersmith Infant Neurological Examination, eye-tracking, Bayley Scales of Infant and Toddler Development (Bayley-III), and Magnetic Resonance Imaging (MRI).</p><p><strong>Discussion: </strong>This study will advance understanding of the impact of nutrition and inflammation in pregnancy on long-term offspring neurodevelopment. This study aims to fill a critical knowledge gap on the benefits of prenatal interventions to promote the health of mothers and their offspring.</p><p><strong>Ethics and dissemination: </strong>This study was approved by the Institutional Review Boards of Addis Continental Institute of Public Health (ACIPH/IRB/002/2022) and Mass General Brigham (2023P000461). Results will be disseminated to local and international stakeholders.</p><p><strong>Trial registration number: </strong>NCT06296238.</p>","PeriodicalId":9069,"journal":{"name":"BMJ Paediatrics Open","volume":"8 1","pages":""},"PeriodicalIF":2.0,"publicationDate":"2024-12-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11683997/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142892003","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-12-24DOI: 10.1136/bmjpo-2024-003020
Lea Schemer, Lauren E Harrison, Courtney W Hess, Alexandra J Neville, Nicole Jehl, Ryan S L Ma, Julia A Glombiewski, Laura E Simons
Background: To minimise the referral gap to pain psychology, the purpose of this study was to describe clinician-perceived patient suitability for pain psychology referral, develop a referral plan and outline essential elements of a referral conversation via a modified Delphi approach with multidisciplinary paediatric pain providers.
Methods: We employed a three-round modified Delphi approach consulting multidisciplinary paediatric pain providers (n=18) including physicians, psychologists, physical therapists, occupational therapists and nurse practitioners (PT, OT, NP). Based on the responses to an online survey (Round 1), initial statements regarding the pain psychology referral process were developed. These statements were revised in three separate panels (MD panel, PSY panel, PT, OT, NP panel; Round 2). A priori consensus criteria were verified for each statement within and between groups using anonymous responses to a concluding online survey (Round 3).
Results: Approximately one-third of the statements (35%) reached consensus across all panels. For example, paediatric pain providers agreed that referrals should be communicated verbally, along with written materials, and that pain should be explained early from a biopsychosocial perspective. Paediatric pain providers also suggested minimising barriers through a flexible, stepped-care approach that adapts the delivery of pain psychology beyond traditional models. However, most statements reached consensus in only one or two panels (52%), indicating a lack of consensus across disciplines. The data suggest that it was comparatively easier to reach an overall consensus on statements formulating an ideal referral process to pain psychology (50%) than on statements characterising patient suitability (13%).
Conclusions: Paediatric pain providers developed an actionable plan for pain psychology referrals. This plan could bridge referral gaps and improve access to pain psychology treatment. Given the low provider consensus on patient suitability, further research is warranted to understand pain psychology referral decision-making, including differing perceptions of patient suitability across disciplines.
{"title":"Reaching experts for enhanced referral (REFER) to pain psychology: a modified Delphi approach with multidisciplinary paediatric pain providers at a specialised center in the USA.","authors":"Lea Schemer, Lauren E Harrison, Courtney W Hess, Alexandra J Neville, Nicole Jehl, Ryan S L Ma, Julia A Glombiewski, Laura E Simons","doi":"10.1136/bmjpo-2024-003020","DOIUrl":"10.1136/bmjpo-2024-003020","url":null,"abstract":"<p><strong>Background: </strong>To minimise the referral gap to pain psychology, the purpose of this study was to describe clinician-perceived patient suitability for pain psychology referral, develop a referral plan and outline essential elements of a referral conversation via a modified Delphi approach with multidisciplinary paediatric pain providers.</p><p><strong>Methods: </strong>We employed a three-round modified Delphi approach consulting multidisciplinary paediatric pain providers (n=18) including physicians, psychologists, physical therapists, occupational therapists and nurse practitioners (PT, OT, NP). Based on the responses to an online survey (Round 1), initial statements regarding the pain psychology referral process were developed. These statements were revised in three separate panels (MD panel, PSY panel, PT, OT, NP panel; Round 2). A priori consensus criteria were verified for each statement within and between groups using anonymous responses to a concluding online survey (Round 3).</p><p><strong>Results: </strong>Approximately one-third of the statements (35%) reached consensus across all panels. For example, paediatric pain providers agreed that referrals should be communicated verbally, along with written materials, and that pain should be explained early from a biopsychosocial perspective. Paediatric pain providers also suggested minimising barriers through a flexible, stepped-care approach that adapts the delivery of pain psychology beyond traditional models. However, most statements reached consensus in only one or two panels (52%), indicating a lack of consensus across disciplines. The data suggest that it was comparatively easier to reach an overall consensus on statements formulating an ideal referral process to pain psychology (50%) than on statements characterising patient suitability (13%).</p><p><strong>Conclusions: </strong>Paediatric pain providers developed an actionable plan for pain psychology referrals. This plan could bridge referral gaps and improve access to pain psychology treatment. Given the low provider consensus on patient suitability, further research is warranted to understand pain psychology referral decision-making, including differing perceptions of patient suitability across disciplines.</p>","PeriodicalId":9069,"journal":{"name":"BMJ Paediatrics Open","volume":"8 1","pages":""},"PeriodicalIF":2.0,"publicationDate":"2024-12-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11683953/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142892006","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-12-24DOI: 10.1136/bmjpo-2024-002869
Philippa Harris, Olivia Twose, Aileen Ni Chaoilte, Paola Cinardo, Lucy Bradbeer, Nicky Longley, Sarah Eisen, Allison Ward
People seeking asylum and refugees living in initial accommodation in the UK can experience significant barriers to accessing care. They often have complex health and social needs and may experience fragmentation in the delivery of services. The Respond Integrated Refugee Health Service, hosted by University College London Hospital and operating across North Central London, has been created to address some of these challenges. In addition to offering in-person holistic health and well-being assessments, infection screening and onward care planning, Respond has developed an online multidisciplinary team (MDT) forum to support professionals working with the most complex of cases. Key professional groups from across the network are invited to contribute to multidisciplinary care planning, providing an efficient and streamlined multiagency model of care, improved access to interdisciplinary pathways and opportunities for interprofessional learning. Here, we describe the creation of the Respond Complex Refugee Health Advice and Guidance MDT and discuss the perceived benefits and limitations of the MDT approach in improving the care of people seeking asylum and refugees.
{"title":"Empowering professionals: a multidisciplinary approach to supporting people seeking asylum and refugees.","authors":"Philippa Harris, Olivia Twose, Aileen Ni Chaoilte, Paola Cinardo, Lucy Bradbeer, Nicky Longley, Sarah Eisen, Allison Ward","doi":"10.1136/bmjpo-2024-002869","DOIUrl":"10.1136/bmjpo-2024-002869","url":null,"abstract":"<p><p>People seeking asylum and refugees living in initial accommodation in the UK can experience significant barriers to accessing care. They often have complex health and social needs and may experience fragmentation in the delivery of services. The Respond Integrated Refugee Health Service, hosted by University College London Hospital and operating across North Central London, has been created to address some of these challenges. In addition to offering in-person holistic health and well-being assessments, infection screening and onward care planning, Respond has developed an online multidisciplinary team (MDT) forum to support professionals working with the most complex of cases. Key professional groups from across the network are invited to contribute to multidisciplinary care planning, providing an efficient and streamlined multiagency model of care, improved access to interdisciplinary pathways and opportunities for interprofessional learning. Here, we describe the creation of the Respond Complex Refugee Health Advice and Guidance MDT and discuss the perceived benefits and limitations of the MDT approach in improving the care of people seeking asylum and refugees.</p>","PeriodicalId":9069,"journal":{"name":"BMJ Paediatrics Open","volume":"8 1","pages":""},"PeriodicalIF":2.0,"publicationDate":"2024-12-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11683891/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142892002","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-12-16DOI: 10.1136/bmjpo-2024-002982
Himali de Silva, Neekita Shah, Narad Mathura, Christina Smith
Children living with Down syndrome are at a high risk of eating and drinking difficulties (dysphagia) and are more susceptible to respiratory infections. In an urban National Health Service community Trust, a retrospective service evaluation was carried out for referrals received during 2012-2017. The study examined the respiratory health outcomes 3 years after dysphagia intervention. Children whose dysphagia was identified early (<12 months) using cervical auscultation with subsequent intervention did not develop lower respiratory tract infections (LRTI) post intervention. Children whose dysphagia management was commenced after 12 months of age and those who had no intervention developed LRTI.
{"title":"Respiratory health outcomes of children with Down Syndrome following dysphagia management: a service evaluation.","authors":"Himali de Silva, Neekita Shah, Narad Mathura, Christina Smith","doi":"10.1136/bmjpo-2024-002982","DOIUrl":"https://doi.org/10.1136/bmjpo-2024-002982","url":null,"abstract":"<p><p>Children living with Down syndrome are at a high risk of eating and drinking difficulties (dysphagia) and are more susceptible to respiratory infections. In an urban National Health Service community Trust, a retrospective service evaluation was carried out for referrals received during 2012-2017. The study examined the respiratory health outcomes 3 years after dysphagia intervention. Children whose dysphagia was identified early (<12 months) using cervical auscultation with subsequent intervention did not develop lower respiratory tract infections (LRTI) post intervention. Children whose dysphagia management was commenced after 12 months of age and those who had no intervention developed LRTI.</p>","PeriodicalId":9069,"journal":{"name":"BMJ Paediatrics Open","volume":"8 1","pages":""},"PeriodicalIF":2.0,"publicationDate":"2024-12-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142845915","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-12-12DOI: 10.1136/bmjpo-2024-003107
Jennifer Lh Peterson, Nicola Booth, Ajit Mahaveer
{"title":"In or out: the experience and ethical issues encountered with an opt-out neonatal genetic study.","authors":"Jennifer Lh Peterson, Nicola Booth, Ajit Mahaveer","doi":"10.1136/bmjpo-2024-003107","DOIUrl":"10.1136/bmjpo-2024-003107","url":null,"abstract":"","PeriodicalId":9069,"journal":{"name":"BMJ Paediatrics Open","volume":"8 1","pages":""},"PeriodicalIF":2.0,"publicationDate":"2024-12-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11647305/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142817243","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-12-12DOI: 10.1136/bmjpo-2024-003063
Morris Gordon, Wathsala Hathagoda, Shaman Rajindrajith, Vassiliki Sinopoulou, Mansour Abdulshafea, Carlos Velasco, Merit Tabbers, Marc A Benninga
Background: The Rome criteria define childhood functional constipation but do not address refractory constipation. Attempts to define refractory constipation lack consensus. The interchangeable use of 'refractory' and 'intractable' or 'therapy-resistant' constipation and lack of understanding of the therapeutic ceilings before this diagnosis complicates the definition.
Aim: To conduct an online cross-sectional study among medical professionals and researchers across a range of countries, to propose a consensus definition, terminology and duration of medically unresponsive constipation.
Method: An expert-designed questionnaire was disseminated via Google Forms in a two-stage study over 2 months targeting paediatric gastroenterology professionals globally and Latin American clinicians with a translated version. The questionnaire had seven critical questions containing details needed to define medically unresponsive constipation. The study protocol was approved by the ethics review panel.
Results: The survey involved 1079 participants: 87 from various countries in the first phase and 992 from Latin America in the second. There were 619 (57.3%) general paediatricians and 462 (43 %) paediatric gastroenterologists. The preferred term to indicate poorly responding constipation was 'therapy-resistant constipation' (47.8%), followed by 'refractory constipation' (43.6%). The majority of respondents (92.9%) agreed on considering a time frame for defining refractory constipation, with 37.7% suggesting 2-3 months. 467 (43.2%) recommended including failure despite maximum laxative therapy with two agents should be considered as previous therapy failure. Compliance with therapy was deemed essential for successful treatment by 91.1%, assessed through detailed history-taking (47.4%) or medical/pharmacy records (29.4%).
Conclusion: Based on the professional views collected in this study, we propose the term 'therapy-resistant constipation' and it can be defined as constipation that is not responding to a maximum dose of at least two laxatives of different classes for a minimum of 3 months with good compliance in a secondary or tertiary care facility.
{"title":"Towards a definition of refractory/therapy-resistant/intractable constipation in children: a cross-sectional, questionnaire-based, online survey.","authors":"Morris Gordon, Wathsala Hathagoda, Shaman Rajindrajith, Vassiliki Sinopoulou, Mansour Abdulshafea, Carlos Velasco, Merit Tabbers, Marc A Benninga","doi":"10.1136/bmjpo-2024-003063","DOIUrl":"10.1136/bmjpo-2024-003063","url":null,"abstract":"<p><strong>Background: </strong>The Rome criteria define childhood functional constipation but do not address refractory constipation. Attempts to define refractory constipation lack consensus. The interchangeable use of 'refractory' and 'intractable' or 'therapy-resistant' constipation and lack of understanding of the therapeutic ceilings before this diagnosis complicates the definition.</p><p><strong>Aim: </strong>To conduct an online cross-sectional study among medical professionals and researchers across a range of countries, to propose a consensus definition, terminology and duration of medically unresponsive constipation.</p><p><strong>Method: </strong>An expert-designed questionnaire was disseminated via Google Forms in a two-stage study over 2 months targeting paediatric gastroenterology professionals globally and Latin American clinicians with a translated version. The questionnaire had seven critical questions containing details needed to define medically unresponsive constipation. The study protocol was approved by the ethics review panel.</p><p><strong>Results: </strong>The survey involved 1079 participants: 87 from various countries in the first phase and 992 from Latin America in the second. There were 619 (57.3%) general paediatricians and 462 (43 %) paediatric gastroenterologists. The preferred term to indicate poorly responding constipation was 'therapy-resistant constipation' (47.8%), followed by 'refractory constipation' (43.6%). The majority of respondents (92.9%) agreed on considering a time frame for defining refractory constipation, with 37.7% suggesting 2-3 months. 467 (43.2%) recommended including failure despite maximum laxative therapy with two agents should be considered as previous therapy failure. Compliance with therapy was deemed essential for successful treatment by 91.1%, assessed through detailed history-taking (47.4%) or medical/pharmacy records (29.4%).</p><p><strong>Conclusion: </strong>Based on the professional views collected in this study, we propose the term 'therapy-resistant constipation' and it can be defined as constipation that is not responding to a maximum dose of at least two laxatives of different classes for a minimum of 3 months with good compliance in a secondary or tertiary care facility.</p>","PeriodicalId":9069,"journal":{"name":"BMJ Paediatrics Open","volume":"8 1","pages":""},"PeriodicalIF":2.0,"publicationDate":"2024-12-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11647291/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142817246","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-12-12DOI: 10.1136/bmjpo-2023-002367
Roxane Dumont, Elsa Lorthe, Viviane Richard, Andrea Loizeau, Klara M Posfay-Barbe, Rémy P Barbe, Silvia Stringhini, Idris Guessous
Future time perspectives (FTP) and future-related concerns in adolescence remain underexplored. We aimed to identify factors associated with limited FTP and describe future-related concerns. Data were drawn from a population-based sample of adolescents aged 14-17 participating in the SEROCoV-KIDS cohort study, in Geneva, Switzerland (October 2022). Of 329 adolescents, 56/329 (17%) reported limited FTP; determinants included prior low mental well-being, limited social support, sexual minority identity, academic difficulties and excessive screen time. Adolescents' main future-oriented concerns encompassed failure, education and climate change. These results underscore the need to address future perspectives/concerns among young people and implement interventions that strengthen adolescent resilience.
{"title":"Future time perspectives and concerns among adolescents in 2022.","authors":"Roxane Dumont, Elsa Lorthe, Viviane Richard, Andrea Loizeau, Klara M Posfay-Barbe, Rémy P Barbe, Silvia Stringhini, Idris Guessous","doi":"10.1136/bmjpo-2023-002367","DOIUrl":"https://doi.org/10.1136/bmjpo-2023-002367","url":null,"abstract":"<p><p>Future time perspectives (FTP) and future-related concerns in adolescence remain underexplored. We aimed to identify factors associated with limited FTP and describe future-related concerns. Data were drawn from a population-based sample of adolescents aged 14-17 participating in the SEROCoV-KIDS cohort study, in Geneva, Switzerland (October 2022). Of 329 adolescents, 56/329 (17%) reported limited FTP; determinants included prior low mental well-being, limited social support, sexual minority identity, academic difficulties and excessive screen time. Adolescents' main future-oriented concerns encompassed failure, education and climate change. These results underscore the need to address future perspectives/concerns among young people and implement interventions that strengthen adolescent resilience.</p>","PeriodicalId":9069,"journal":{"name":"BMJ Paediatrics Open","volume":"8 1","pages":""},"PeriodicalIF":2.0,"publicationDate":"2024-12-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142817242","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-12-12DOI: 10.1136/bmjpo-2024-003103
Marco Bani, Selena Russo, Serena Gasperini, Viola Crescitelli, Francesca Menni, Francesca Furlan, Francesco Tagliaferri, Graziella Cefalo, Sabrina Paci, Giuseppe Banderali, Paola Marchisio, Andrea Biondi, Maria Grazia Strepparava
Background: Receiving communication of positivity for metabolic diseases at Expanded Newborn Screening can be extremely stressful for parents, both in case of false positive and true positive cases. However, little is known about the predictors of distress and differential impact on mothers and fathers.
Methods: In this longitudinal study, 169 fathers and 171 mothers referred to one of the Italian metabolic centres for communication of positivity completed a survey including General Health Questionnaire-12, Emotion Thermometers (measuring stress, anxiety, depression, anger and need for help), Impact of Event Scale-Revised, Multidimensional Scale of Perceived Social Support and Emotion Regulation Questionnaire. Perceived severity and control of the children's health were also assessed. The survey was completed in person after the first session at metabolic centres and online after 1, 3 and 6 months.
Results: Nearly 80% of parents reported a clinical level of distress and anxiety after the communication of positivity, one-third of them reported post-traumatic symptoms and more than half of parents reported a need for help. After 6 months, there are still more than 30% of parents with a clinical level of distress and anxiety, 6% with post-traumatic symptoms and more than 20% who continue to express a need for help. No gender difference was reported and no differences emerged between pre-COVID-19 and post-COVID-19 periods for parental distress and post-traumatic symptoms.Social support, perceived severity and control of the child's health-but not gender or previous parental experience-predicted the post-traumatic symptoms at baseline while at 6 months the only significant predictor was perceived severity.
Conclusion: Adequate psychological support should be provided from the initial communication for both parents and for true positive, false positive and variants of uncertain significance/heterozygous carrier cases.
{"title":"Prevalence and predictors of parental distress at the communication of positivity at newborn screening for metabolic diseases: an Italian longitudinal study.","authors":"Marco Bani, Selena Russo, Serena Gasperini, Viola Crescitelli, Francesca Menni, Francesca Furlan, Francesco Tagliaferri, Graziella Cefalo, Sabrina Paci, Giuseppe Banderali, Paola Marchisio, Andrea Biondi, Maria Grazia Strepparava","doi":"10.1136/bmjpo-2024-003103","DOIUrl":"10.1136/bmjpo-2024-003103","url":null,"abstract":"<p><strong>Background: </strong>Receiving communication of positivity for metabolic diseases at Expanded Newborn Screening can be extremely stressful for parents, both in case of false positive and true positive cases. However, little is known about the predictors of distress and differential impact on mothers and fathers.</p><p><strong>Methods: </strong>In this longitudinal study, 169 fathers and 171 mothers referred to one of the Italian metabolic centres for communication of positivity completed a survey including General Health Questionnaire-12, Emotion Thermometers (measuring stress, anxiety, depression, anger and need for help), Impact of Event Scale-Revised, Multidimensional Scale of Perceived Social Support and Emotion Regulation Questionnaire. Perceived severity and control of the children's health were also assessed. The survey was completed in person after the first session at metabolic centres and online after 1, 3 and 6 months.</p><p><strong>Results: </strong>Nearly 80% of parents reported a clinical level of distress and anxiety after the communication of positivity, one-third of them reported post-traumatic symptoms and more than half of parents reported a need for help. After 6 months, there are still more than 30% of parents with a clinical level of distress and anxiety, 6% with post-traumatic symptoms and more than 20% who continue to express a need for help. No gender difference was reported and no differences emerged between pre-COVID-19 and post-COVID-19 periods for parental distress and post-traumatic symptoms.Social support, perceived severity and control of the child's health-but not gender or previous parental experience-predicted the post-traumatic symptoms at baseline while at 6 months the only significant predictor was perceived severity.</p><p><strong>Conclusion: </strong>Adequate psychological support should be provided from the initial communication for both parents and for true positive, false positive and variants of uncertain significance/heterozygous carrier cases.</p>","PeriodicalId":9069,"journal":{"name":"BMJ Paediatrics Open","volume":"8 1","pages":""},"PeriodicalIF":2.0,"publicationDate":"2024-12-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11667425/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142817245","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-12-11DOI: 10.1136/bmjpo-2024-003018
Shay Ward, Gráinne Donohue, Johanna Murray, Fiona McNicholas
Background: The COVID-19 pandemic placed increased pressure on service provision and healthcare worker (HCW) wellness. As the crisis of the pandemic receded, paediatric healthcare staff required an appropriate response to facilitate individual and organisational recovery, to minimise long-term HCW burn-out and to be better equipped for future crisis in paediatric healthcare.
Objective: To explore the experiences of HCWs working during the COVID-19 pandemic in an acute paediatric hospital to determine an appropriate leadership response in the postcrisis work environment.
Methods: Qualitative research design using responses from open-ended questions from 133 clinical and non-clinical staff (89% clinical) from an Irish paediatric teaching hospital. Responses were thematically analysed.
Results: Paediatric HCWs experienced frustration, uncertainty, anxiety and stress, during the pandemic crisis. Perceived organisational contributors included communication inconsistencies, inadequate support and resources, including staff shortages. This exposed remaining staff to high risk for long-term burn-out as the pandemic recedes. Three themes were developed detailing this: support, communication and trust.
Conclusion: This research supports the long-standing need to increase mental health service investment and to implement an appropriate response to regain and maintain a healthy workforce, post-COVID-19. The organisational response should address the biopsychosocial needs of the individual and paediatric healthcare organisations should work dynamically, creatively and collaboratively to ensure the psychological safety of their workforce.
{"title":"Lessons from a crisis: occupational stress in healthcare workers in an acute paediatric teaching hospital in Ireland.","authors":"Shay Ward, Gráinne Donohue, Johanna Murray, Fiona McNicholas","doi":"10.1136/bmjpo-2024-003018","DOIUrl":"10.1136/bmjpo-2024-003018","url":null,"abstract":"<p><strong>Background: </strong>The COVID-19 pandemic placed increased pressure on service provision and healthcare worker (HCW) wellness. As the crisis of the pandemic receded, paediatric healthcare staff required an appropriate response to facilitate individual and organisational recovery, to minimise long-term HCW burn-out and to be better equipped for future crisis in paediatric healthcare.</p><p><strong>Objective: </strong>To explore the experiences of HCWs working during the COVID-19 pandemic in an acute paediatric hospital to determine an appropriate leadership response in the postcrisis work environment.</p><p><strong>Methods: </strong>Qualitative research design using responses from open-ended questions from 133 clinical and non-clinical staff (89% clinical) from an Irish paediatric teaching hospital. Responses were thematically analysed.</p><p><strong>Results: </strong>Paediatric HCWs experienced frustration, uncertainty, anxiety and stress, during the pandemic crisis. Perceived organisational contributors included communication inconsistencies, inadequate support and resources, including staff shortages. This exposed remaining staff to high risk for long-term burn-out as the pandemic recedes. Three themes were developed detailing this: support, communication and trust.</p><p><strong>Conclusion: </strong>This research supports the long-standing need to increase mental health service investment and to implement an appropriate response to regain and maintain a healthy workforce, post-COVID-19. The organisational response should address the biopsychosocial needs of the individual and paediatric healthcare organisations should work dynamically, creatively and collaboratively to ensure the psychological safety of their workforce.</p>","PeriodicalId":9069,"journal":{"name":"BMJ Paediatrics Open","volume":"8 1","pages":""},"PeriodicalIF":2.0,"publicationDate":"2024-12-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11647333/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142812151","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2024-12-11DOI: 10.1136/bmjpo-2024-002505
Nida Zahid, Syed Ather Enam, Thomas Mårtensson, Iqbal Azam, Naureen Mushtaq, Mariya Moochhala, Aneesa Hassan, Faiza Kausar, Saqib Bakhshi, Lal Rehman, Farrukh Javeed, Muhammad Nouman Mughal, Sadaf Altaf, Salman Kirmani, Nick Brown
Background: Children and young people (CYP) with primary brain tumour (PBT) are at high risk for developing late effects, potentially affecting long-term quality of life (QoL). In low-income and middle-income countries, QoL has not been studied in depth in CYP. In the present study, CYP treated for PBTs in Pakistan were evaluated regarding (A) mean change in QoL scores pretreatment and 12 months post-treatment and (B) predictors of change in QoL scores 12 months post-treatment.
Methods: A prospective cohort study was conducted from November 2020 to July 2023. CYP aged 5-21 years, with newly diagnosed PBTs, were recruited from tertiary care centres in Karachi, Pakistan. QoL was assessed using the Paediatric Quality of Life Inventory 4 generic and brain tumour module, pretreatment and at 12 months post-treatment, by a trained psychologist.
Results: A total of 48 patients diagnosed with PBTs were enrolled in the study. At the 12-month post-treatment, 25 (52%) of the patients were reassessed, while 23 (48%) were lost to follow-up. There was no significant difference in mean global QoL scores of patients at 12 months post-treatment. On multivariable analysis, there was a statistically significant improvement in mean global QoL scores among those who underwent total surgical tumour resection (beta 7.7; 95% CI 0.9, 14.5) and maximum safe surgical tumour resection (beta 10.6; 95% CI 4.7, 16.6). However, there was a significant decline in mean global QoL scores among those who had hydrocephalous at diagnosis managed with a shunt and/or external ventricular drain (EVD) (beta -10.0; 95% CI -14.5, -5.5).
Conclusion: This study found a decline in mean global QoL scores among those with hydrocephalous at diagnosis who were managed with a shunt and/or EVD but an improvement in those who underwent total or maximum safe surgical tumour resection. Larger-scale studies are needed to comprehensively evaluate and validate these outcomes.
背景:患有原发性脑肿瘤(PBT)的儿童和年轻人(CYP)具有发展晚期效应的高风险,可能影响长期生活质量(QoL)。在低收入和中等收入国家,生活质量在CYP中尚未得到深入研究。在本研究中,对巴基斯坦PBTs的CYP治疗进行了评估,包括(A)治疗前和治疗后12个月生活质量评分的平均变化和(B)治疗后12个月生活质量评分变化的预测因子。方法:于2020年11月至2023年7月进行前瞻性队列研究。从巴基斯坦卡拉奇的三级保健中心招募了5-21岁的新诊断为pbt的CYP。生活质量由训练有素的心理学家使用儿科生活质量量表4通用和脑肿瘤模块,在治疗前和治疗后12个月进行评估。结果:共有48名诊断为PBTs的患者入组研究。在治疗后12个月,25例(52%)患者进行了重新评估,23例(48%)患者失去了随访。治疗后12个月,两组患者的平均总体生活质量评分无显著差异。在多变量分析中,接受肿瘤全切除术的患者总体生活质量平均评分有统计学意义的改善(β 7.7;95% CI 0.9, 14.5)和最大安全手术肿瘤切除(β 10.6;95% ci 4.7, 16.6)。然而,在诊断时患有脑积水并采用分流术和/或脑室外引流术(EVD)的患者中,平均总体生活质量评分显著下降(β -10.0;95% ci -14.5, -5.5)。结论:本研究发现,在诊断时接受分流术和/或EVD治疗的脑积水患者中,平均总体生活质量评分下降,但在接受全部或最大限度安全手术肿瘤切除术的患者中,总体生活质量评分有所改善。需要更大规模的研究来全面评估和验证这些结果。
{"title":"Sociodemographic and clinical predictors of quality-of-life outcome in children and young people with primary brain tumour in Karachi, Pakistan: a prospective cohort study.","authors":"Nida Zahid, Syed Ather Enam, Thomas Mårtensson, Iqbal Azam, Naureen Mushtaq, Mariya Moochhala, Aneesa Hassan, Faiza Kausar, Saqib Bakhshi, Lal Rehman, Farrukh Javeed, Muhammad Nouman Mughal, Sadaf Altaf, Salman Kirmani, Nick Brown","doi":"10.1136/bmjpo-2024-002505","DOIUrl":"10.1136/bmjpo-2024-002505","url":null,"abstract":"<p><strong>Background: </strong>Children and young people (CYP) with primary brain tumour (PBT) are at high risk for developing late effects, potentially affecting long-term quality of life (QoL). In low-income and middle-income countries, QoL has not been studied in depth in CYP. In the present study, CYP treated for PBTs in Pakistan were evaluated regarding (A) mean change in QoL scores pretreatment and 12 months post-treatment and (B) predictors of change in QoL scores 12 months post-treatment.</p><p><strong>Methods: </strong>A prospective cohort study was conducted from November 2020 to July 2023. CYP aged 5-21 years, with newly diagnosed PBTs, were recruited from tertiary care centres in Karachi, Pakistan. QoL was assessed using the Paediatric Quality of Life Inventory 4 generic and brain tumour module, pretreatment and at 12 months post-treatment, by a trained psychologist.</p><p><strong>Results: </strong>A total of 48 patients diagnosed with PBTs were enrolled in the study. At the 12-month post-treatment, 25 (52%) of the patients were reassessed, while 23 (48%) were lost to follow-up. There was no significant difference in mean global QoL scores of patients at 12 months post-treatment. On multivariable analysis, there was a statistically significant improvement in mean global QoL scores among those who underwent total surgical tumour resection (beta 7.7; 95% CI 0.9, 14.5) and maximum safe surgical tumour resection (beta 10.6; 95% CI 4.7, 16.6). However, there was a significant decline in mean global QoL scores among those who had hydrocephalous at diagnosis managed with a shunt and/or external ventricular drain (EVD) (beta -10.0; 95% CI -14.5, -5.5).</p><p><strong>Conclusion: </strong>This study found a decline in mean global QoL scores among those with hydrocephalous at diagnosis who were managed with a shunt and/or EVD but an improvement in those who underwent total or maximum safe surgical tumour resection. Larger-scale studies are needed to comprehensively evaluate and validate these outcomes.</p>","PeriodicalId":9069,"journal":{"name":"BMJ Paediatrics Open","volume":"8 1","pages":""},"PeriodicalIF":2.0,"publicationDate":"2024-12-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11647362/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142812152","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}