A Narrative Review of Patient-Reported Outcome Measures and Their Application in Recent Pediatric Surgical Research: Advancing Knowledge and Offering New Perspectives to the Field.

INTRODUCTION: Patient-reported outcome measures (PROMs) can be employed in both research and clinical care to enhance our understanding of outcomes that matter to patients. This narrative review aims to describe PROM use in recent pediatric surgical research, identify and describe psychometrically robust PROMs, providing an overview of those derived from pediatric patient input, and make recommendations for future research. MATERIALS AND METHODS: A search was conducted to identify articles published from 2021 to August 2023 describing the availability and/or use of at least one valid or reliable PROM in children with conditions including anorectal malformations, biliary atresia, congenital diaphragmatic hernia, duodenal atresia, esophageal atresia, abdominal wall defects, Hirschsprung's disease, sacrococcygeal teratoma, and short bowel syndrome. Articles were categorized based on their objectives in applying PROMs. Psychometrically robust PROMs were identified and described. RESULTS: Out of the 345 articles identified, 49 met the inclusion criteria. Seventeen focused on esophageal atresia and 14 on Hirschsprung's disease. Twenty-nine PROMs were identified, with 12 deemed psychometrically robust. Seven psychometrically robust PROMs were developed using patient input in the primary item generation. Most PROMs were applied to advance understanding of conditions and/or treatment and fewer were developed or psychometrically evaluated. No PROMs were assessed for their impact or incorporated into an implementation study. CONCLUSIONS: This review reveals gaps in the application of PROMs in recent pediatric surgical research. Emphasis should be placed on the development and utilization of psychometrically robust PROMs, broadening the scope of covered diseases, conducting impact assessments, and evaluating implementation strategies.

How do adolescents experience a newly developed Online Single Session Sleep Intervention? A Think-Aloud Study.

BACKGROUND: Sleep problems are common in adolescents and have detrimental impacts on physical and mental health and daily functioning. Evidence-based treatment like cognitive behaviour therapy for insomnia (CBT-I) is often hard to access, and adolescents may not engage in and adhere to longer, clinician-delivered interventions. Brief, self-guided, and accessible sleep interventions are needed. OBJECTIVE: To explore the user experience of a prototype online self-help single session sleep intervention developed for adolescents. METHODS: Eleven participants aged 17-19 years (8 females, 3 males) took part in online retrospective think-aloud interviews. Participants first completed the prototype intervention independently and were then shown the intervention page by page and asked to verbalise their thoughts and experiences. Transcripts were analyzed thematically. RESULTS: Participants found the intervention helpful. Four themes were generated - 'Educative: Learning, but more fun', 'Effortless: Quicker and Easier', 'Personalization: Power of Choice', and 'Positivity: Just Good Vibes'. The theme 'Educative: Learning, but more fun' encompassed two sub-themes 'Opportunity to Learn' and 'Aesthetics and Learning'. These themes reflected participants' views that the intervention was educative, personalised, solution-oriented and easy to use, but could incorporate more graphics and visuals to aid in learning and could be made more effortless and positive through modifications to its design. CONCLUSIONS: Findings convey the importance of ensuring educative well-designed content, personalization, a positive tone, and ease of use while designing interventions targeting adolescents's sleep and mental health. They also indicate areas for further developing the intervention.

A Brief Description of How Teachers Experience An Infographic Loneliness Toolkit About Supporting Adolescents to Overcome Loneliness.

Loneliness is a common experience amongst adolescents. As adolescents spend much of their time in school, it is important that school staff can support adolescent students experiencing loneliness. The current study aimed to explore teachers' experiences of a 1-page loneliness toolkit regarding adolescent loneliness. An online survey to collect ratings and descriptions of experiences was distributed to secondary school teachers. Findings showed that both self-rated knowledge and experience of students experiencing loneliness were positively correlated with how useful teachers found the loneliness toolkit. Three themes were developed about how useful teachers found the toolkit; clarity, brings attention to loneliness, and communication. Two themes were developed about how the user experience of the toolkit could be improved; education, and interactive student support. Future research should investigate more effective methodologies aimed at supporting adolescents experiencing loneliness to aid teachers in supporting their students.

The International Network on Oesophageal Atresia (INoEA) consensus guidelines on the transition of patients with oesophageal atresia-tracheoesophageal fistula.

Oesophageal atresia-tracheoesophageal fistula (EA-TEF) is a common congenital digestive disease. Patients with EA-TEF face gastrointestinal, surgical, respiratory, otolaryngological, nutritional, psychological and quality of life issues in childhood, adolescence and adulthood. Although consensus guidelines exist for the management of gastrointestinal, nutritional, surgical and respiratory problems in childhood, a systematic approach to the care of these patients in adolescence, during transition to adulthood and in adulthood is currently lacking. The Transition Working Group of the International Network on Oesophageal Atresia (INoEA) was charged with the task of developing uniform evidence-based guidelines for the management of complications through the transition from adolescence into adulthood. Forty-two questions addressing the diagnosis, treatment and prognosis of gastrointestinal, surgical, respiratory, otolaryngological, nutritional, psychological and quality of life complications that patients with EA-TEF face during adolescence and after the transition to adulthood were formulated. A systematic literature search was performed based on which recommendations were made. All recommendations were discussed and finalized during consensus meetings, and the group members voted on each recommendation. Expert opinion was used when no randomized controlled trials were available to support the recommendation. The list of the 42 statements, all based on expert opinion, was voted on and agreed upon.

The lived experience of adults and parents: Transitioning from paediatric to adult health care with oesophageal atresia and tracheo-oesophageal fistula.

AIM AND OBJECTIVE: To explore the experience of healthcare transition from paediatric to adult health care for adults born with oesophageal atresia and tracheo-oesophageal fistula (OA/TOF) and parents. BACKGROUND: OA/TOF is a rare and chronic health condition that can require lifelong medical follow-up and management. There is evidence to suggest that transitioning from paediatric to adult health care can be problematic for people with rare and chronic conditions, including OA/TOF. The previous literature suggests that the experience of transitioning with a rare condition is more complex than transitioning with a common chronic condition. DESIGN: The current study was a qualitative, cross-sectional, survey-based study. METHODS: Data were collected through an online survey. Parents of children born with OA/TOF (n = 23) and adults born with OA/TOF (n = 16) were recruited through a UK-based OA/TOF patient charity. Data from six open-ended questions were analysed using a hybrid approach combining elements of inductive and deductive thematic analyses. Throughout the research process, the SRQR were followed. RESULTS: Five themes were constructed during the analysis, reflecting the experience of parents and adults transitioning from paediatric to adult health care: thrown into the unknown; a cultural shift; stepping back and stepping up; 'no transition as such'; and living with uncertainty. CONCLUSIONS: The findings suggested that a formalised, managed healthcare transition is not commonly experienced by people born with OA/TOF and parents. RELEVANCE TO CLINICAL PRACTICE: We recommend a formalised healthcare transition process in OA/TOF, including preparation for transition and having a named key worker to manage the multidisciplinary transition process. The results also highlighted the need for adults born with OA/TOF to have access to a specialist health service with knowledge and understanding of issues related to OA/TOF.

Fear, isolation and the importance of support: A qualitative study of parents' experiences of feeding a child born with esophageal atresia.

OBJECTIVE: Feeding and swallowing difficulties in children are increasing due to improved survival rates of children with complex medical conditions. Despite being common complications of esophageal atresia (EA), EA related feeding difficulties have received little attention in research. Establishing positive feeding interactions and practices are important for child health and development, and for parental and child mental health. The current study aimed to investigate the parental experiences of feeding a child born with EA. METHODS: An international online survey was developed and disseminated to parents of children born with EA, aged 0-12 years, in collaboration with a patient charity for EA. Reflexive Thematic Analysis was used to analyze the qualitative survey responses. RESULTS: 176 participants were included in the qualitative sample from a larger international online survey study, chosen by a process of selective coding. Three themes were constructed during the analysis: 1) Anxiety, trauma and loss; 2) Isolated and unsupported; and 3) Supported. The results indicated that parents of children born with EA experienced significant anxiety related to their child's swallowing and feeding difficulties and traumatic experiences during feeding, and that these led to parents feeling a sense of loss and sadness. It was also found that support, or a lack of support, within parents' social environment might mediate parental experiences of child's feeding difficulties. CONCLUSIONS: This study highlighted the importance of support for parents of children born with EA, and suggested a need for improved guidance for feeding and swallowing difficulties.

A thematic analysis exploring the psychological well-being of adults born with esophageal atresia.

BACKGROUND: Living with a rare and chronic health condition can have a significant impact on psychological well-being and mental health. There is a growing understanding that Esophageal Atresia (EA), a rare birth defect often accompanied by a Trachea-Esophageal Fistula (TEF), is a complex health condition that requires lifelong medical attention beyond pediatric care into adulthood. Given the reciprocal relationship between one's physical and psychological well-being, the aim of this study was to develop a better understanding of the mental health of adults born with EA/TEF. METHODS: An international online survey was designed and disseminated in collaboration with an EA/TEF patient charity. The qualitative data was analyzed using a reflexive and inductive Thematic Analysis to explore the research question "How can being born with EA/TEF affect psychological well-being in adulthood?" RESULTS: A total of 92 adults born with EA/TEF completed the online survey from 11 different counties. Five themes were generated during the analysis: 'Negative Experience with Healthcare Professionals', 'The Perception of Surgical Scars', 'The Psychosocial Consequences of Dysphagia', 'The Legacy of Medical Trauma', and 'Resilience in the Face of Adversity'. CONCLUSION: The results indicated that adults born with EA/TEF might face emotional challenges that can negatively affect their psychological well-being and mental health. It was also found that some adults born with EA/TEF demonstrate resilience through positive reappraisal of adverse experiences. The current study suggests that a multidisciplinary approach to the care of adults born with EA/TEF is necessary and directions for future research are discussed.

Anxiety and Depression in Parents of Children Born with Esophageal Atresia: An International Online Survey Study.

PURPOSE: Caring for a chronically ill child can be stressful and requires additional care from parents. Parental mental health and stress may impact both parental and child wellbeing, leading to maladaptive parenting practices, and interference with illness management. The aim of the study was to explore the levels of anxiety and depression in parents of children born with esophageal atresia (EA) and to investigate whether parental anxiety and depression were associated with child's medical characteristics or with parental factors. DESIGN AND METHODS: An international online survey was developed and disseminated to parents of children born with EA, aged 0-12 years, via EA patient charity social network sites. A one-way between subjects ANOVA and post hoc statistical analyses were used to examine differences in mean scores of parental anxiety and depression between sub-groups that described child's medical characteristics and parental characteristics. RESULTS: A total of 240 parents completed the survey from 17 different countries. Of these, nearly 70% self-reported raised levels of anxiety, whilst 38% self-reported raised levels of depression. Statistically significant differences in mean scores of parental anxiety and depression were found between sub-groups that described the child's feeding problems, parental age, and perceived support for caring, caring stress and money matters. CONCLUSION: Child's feeding problems related to esophageal atresia, and parental factors, such as younger age, perceived lack of support for caring, caring stress, and money worries, may contribute to the increased levels of parental anxiety and depression in parents of children born with EA.

Older adult hoarders' experiences of being helped by volunteers and volunteers' experiences of helping.

BACKGROUND: There is limited research into the experiences of receiving and providing help in the context of hoarding disorder. AIMS: The present study aimed to explore the experiences of older people with hoarding difficulties receiving help and volunteers providing support to people with hoarding problems. METHOD: Qualitative methods were adopted to investigate the lived experience of participants. A total of seven volunteer helpers and four people with hoarding disorder were recruited and interviewed using a semi-structured interview, designed to explore experiences of providing and receiving help. Qualitative analysis of the interview data was performed using interpretive phenomenological analysis. RESULTS: Four superordinate themes were identified: relationship between client and volunteer; 'live life again'; challenges; and supporting volunteers. The relationship was crucial in providing a trusting foundation from which clients felt able to move forward. Volunteers provided a space for clients to talk and appropriate self-disclosure helped to build a relationship. The informal and 'non-professional' status of volunteers enabled clients to take the lead and feel more in control of the therapeutic process. Volunteer flexibility and lack of time constraints contributed to clients 'making space' for themselves, both in their home and their lives. The support from volunteers enabled clients to 'live life again' and created a domino effect, bringing about improvements in other areas of their lives. CONCLUSIONS: The findings are discussed in relation to the training of health professionals to work with people with hoarding difficulties and the implications of the findings for treatment approaches and service provision.

Antidepressants, social adversity and outcome of depression in general practice.

BACKGROUND: The role of current social risk factors in moderating the impact of antidepressant medication has not previously been explored. METHOD: In a RCT of SSRIs of general practice patients with mild to moderate depression (HDRS 12-19) two social indices of aversive experience were developed on the basis of prior research. First, the Life Events and Difficulties Schedule (LEDS) was used twice to document: i) recent stressful experience prior to baseline, and ii) after baseline and before follow up at 12 weeks both stressful and positive experiences, taking account of 'fresh start' and 'difficulty-reduction' events. Second, an index of unemployment-entrapment at baseline was developed for the current project. The HDRS was used to measure outcome as a continuous score and as a cut-point representing improvement below score 8. RESULTS: Each social index (LEDS and Unemployment-entrapment) was associated with a lower chance of remission at 12 weeks and each was required to model remission along with treatment arm. However there was no interaction: the degree of increased remission for those randomised to SSRIs plus supportive care compared to that for those with supportive care alone was the same regardless of social context. LIMITATIONS: Dating of remission was not as thorough as in previous work with the LEDS. Detailed examination of positive experiences suggested the large majority were not the result of remitting symptoms, but it is impossible to rule this out altogether. CONCLUSIONS: Remission rates among patients in aversive social contexts are consistently much lower irrespective of treatment. There is thus a need to evaluate the efficacy of alternative more socially focussed interventions for depressive conditions likely to take a chronic course in general practice.

Attitudes towards mental illness in Uganda: a survey in 18 districts.

Uganda, in common with many countries in sub-Saharan Africa, has many population risk factors predictive of high levels of mental disorder but poor coverage of mental healthcare (Kigozi, 2005). Recent population studies conducted in Uganda have shown rates of disorder in excess of 20% (Kasoro et al, 2002; Bolton et al, 2004; Ovuga et al, 2005) and the survey by Kasoro et al (2002) showed a high prevalence of patients with severe mental illness and poor access to services. There are 19 psychiatrists for 24.8 million people in Uganda, all but one of whom is based in the capital city, Kampala (Kigozi, 2005). The provision of mental health services relies on the use of psychiatric clinical officers (a cadre of trained mental health workers, similar to community psychiatric nurses, who currently cover 18 of the 56 districts in Uganda), primary care personnel, non-governmental organisations and members of the community. Liaison with traditional healers is encouraged (Ovuga et al, 1999).