Pharmacological, non-invasive brain stimulation and psychological interventions, and their combination, for treating depression after stroke.

BACKGROUND: Depression is an important morbidity associated with stroke that impacts on recovery, yet is often undetected or inadequately treated. OBJECTIVES: To evaluate the benefits and harms of pharmacological intervention, non-invasive brain stimulation, psychological therapy, or combinations of these to treat depression after stroke. SEARCH METHODS: This is a living systematic review. We search for new evidence every two months and update the review when we identify relevant new evidence. Please refer to the Cochrane Database of Systematic Reviews for the current status of this review. We searched the Specialised Registers of Cochrane Stroke, and Cochrane Depression Anxiety and Neurosis, CENTRAL, MEDLINE, Embase, five other databases, two clinical trials registers, reference lists and conference proceedings (February 2022). We contacted study authors. SELECTION CRITERIA: Randomised controlled trials (RCTs) comparing: 1) pharmacological interventions with placebo; 2) non-invasive brain stimulation with sham stimulation or usual care; 3) psychological therapy with usual care or attention control; 4) pharmacological intervention and psychological therapy with pharmacological intervention and usual care or attention control; 5) pharmacological intervention and non-invasive brain stimulation with pharmacological intervention and sham stimulation or usual care; 6) non-invasive brain stimulation and psychological therapy versus sham brain stimulation or usual care and psychological therapy; 7) pharmacological intervention and psychological therapy with placebo and psychological therapy; 8) pharmacological intervention and non-invasive brain stimulation with placebo and non-invasive brain stimulation; and 9) non-invasive brain stimulation and psychological therapy versus non-invasive brain stimulation and usual care or attention control, with the intention of treating depression after stroke. DATA COLLECTION AND ANALYSIS: Two review authors independently selected studies, assessed risk of bias, and extracted data from included studies. We calculated mean difference (MD) or standardised mean difference (SMD) for continuous data, and risk ratio (RR) for dichotomous data, with 95% confidence intervals (CIs). We assessed heterogeneity using the I² statistic and certainty of the evidence according to GRADE. MAIN RESULTS: We included 65 trials (72 comparisons) with 5831 participants. Data were available for: 1) 20 comparisons; 2) nine comparisons; 3) 25 comparisons; 4) three comparisons; 5) 14 comparisons; and 6) one comparison. We found no trials for comparisons 7 to 9. Comparison 1: Pharmacological interventions Very low-certainty evidence from eight trials suggests pharmacological interventions decreased the number of people meeting the study criteria for depression (RR 0.70, 95% CI 0.55 to 0.88; P = 0.002; 8 RCTs; 1025 participants) at end of treatment and very low-certainty evidence from six trials suggests that pharmacological interventions decreased the number of people with inadequate response to treatment (RR 0.47, 95% CI 0.32 to 0.70; P = 0.0002; 6 RCTs; 511 participants) compared to placebo. More adverse events related to the central nervous system (CNS) (RR 1.55, 95% CI 1.12 to 2.15; P = 0.008; 5 RCTs; 488 participants; very low-certainty evidence) and gastrointestinal system (RR 1.62, 95% CI 1.19 to 2.19; P = 0.002; 4 RCTs; 473 participants; very low-certainty evidence) were noted in the pharmacological intervention than in the placebo group. Comparison 2: Non-invasive brain stimulation Very low-certainty evidence from two trials show that non-invasive brain stimulation had little to no effect on the number of people meeting the study criteria for depression (RR 0.67, 95% CI 0.39 to 1.14; P = 0.14; 2 RCTs; 130 participants) and the number of people with inadequate response to treatment (RR 0.84, 95% CI 0.52, 1.37; P = 0.49; 2 RCTs; 130 participants) compared to sham stimulation. Non-invasive brain stimulation resulted in no deaths. Comparison 3: Psychological therapy Very low-certainty evidence from six trials suggests that psychological therapy decreased the number of people meeting the study criteria for depression at end of treatment (RR 0.77, 95% CI 0.62 to 0.95; P = 0.01; 521 participants) compared to usual care/attention control. No trials of psychological therapy reported on the outcome inadequate response to treatment. No differences in the number of deaths or adverse events were found in the psychological therapy group compared to the usual care/attention control group. Comparison 4: Pharmacological interventions with psychological therapy No trials of this combination reported on the primary outcomes. Combination therapy resulted in no deaths. Comparison 5: Pharmacological interventions with non-invasive brain stimulation Non-invasive brain stimulation with pharmacological intervention reduced the number of people meeting study criteria for depression at end of treatment (RR 0.77, 95% CI 0.64 to 0.91; P = 0.002; 3 RCTs; 392 participants; low-certainty evidence) but not the number of people with inadequate response to treatment (RR 0.95, 95% CI 0.69 to 1.30; P = 0.75; 3 RCTs; 392 participants; very low-certainty evidence) compared to pharmacological therapy alone. Very low-certainty evidence from five trials suggest no difference in deaths between this combination therapy (RR 1.06, 95% CI 0.27 to 4.16; P = 0.93; 487 participants) compared to pharmacological therapy intervention and sham stimulation or usual care. Comparison 6: Non-invasive brain stimulation with psychological therapy No trials of this combination reported on the primary outcomes. AUTHORS' CONCLUSIONS: Very low-certainty evidence suggests that pharmacological, psychological and combination therapies can reduce the prevalence of depression while non-invasive brain stimulation had little to no effect on the prevalence of depression. Pharmacological intervention was associated with adverse events related to the CNS and the gastrointestinal tract. More research is required before recommendations can be made about the routine use of such treatments.

ANTECEDENTES: La depresión tiene una morbilidad importante asociada con el accidente cerebrovascular que repercute en la recuperación, pero que a menudo no se detecta o se trata de manera inadecuada. OBJETIVOS: Evaluar los efectos beneficiosos y perjudiciales de las intervenciones farmacológicas, la estimulación cerebral no invasiva, la terapia psicológica o las combinaciones de éstas para tratar la depresión después del accidente cerebrovascular. MÉTODOS DE BÚSQUEDA: Esta es una revisión sistemática continua. Cada dos meses se busca nueva evidencia y la revisión se actualiza cuando se identifica evidencia nueva relevante. Consultar el estado actual de esta revisión en la Base de Datos Cochrane de Revisiones Sistemáticas (Cochrane Database of Systematic Reviews). Se realizaron búsquedas en los Registros especializados del Grupo Cochrane de Accidentes cerebrovasculares (Cochrane Stroke) y del Grupo Cochrane de Depresión, ansiedad y neurosis (Cochrane Depression, Anxiety and Neurosis), en CENTRAL, MEDLINE, Embase, otras cinco bases de datos, dos registros de ensayos clínicos, listas de referencias y resúmenes de congresos (febrero de 2022). Se estableció contacto con autores de estudios. CRITERIOS DE SELECCIÓN: Ensayos controlados aleatorizados (ECA) que compararan: 1) intervenciones farmacológicas con placebo; 2) estimulación cerebral no invasiva con estimulación simulada o atención habitual; 3) terapia psicológica con atención habitual o control de atención; 4) intervención farmacológica y terapia psicológica con intervención farmacológica y atención habitual o control de atención; 5) intervención farmacológica y estimulación cerebral no invasiva con intervención farmacológica y estimulación simulada o atención habitual; 6) estimulación cerebral no invasiva y terapia psicológica versus estimulación cerebral simulada o atención habitual y terapia psicológica; 7) intervención farmacológica y terapia psicológica con placebo y terapia psicológica; 8) intervención farmacológica y estimulación cerebral no invasiva con placebo y estimulación cerebral no invasiva; y 9) estimulación cerebral no invasiva y terapia psicológica versus estimulación cerebral no invasiva y atención habitual o control de atención, con la intención de tratar la depresión después del accidente cerebrovascular. OBTENCIÓN Y ANÁLISIS DE LOS DATOS: Dos autores de la revisión, de forma independiente, seleccionaron los estudios, evaluaron el riesgo de sesgo y extrajeron los datos de los estudios incluidos. Se calculó la diferencia de medias (DM) o la diferencia de medias estandarizada (DME) para los datos continuos, y la razón de riesgos (RR) para los datos dicotómicos, con intervalos de confianza (IC) del 95%. La heterogeneidad se evaluó mediante la estadística I² y la certeza de la evidencia según GRADE. RESULTADOS PRINCIPALES: Se incluyeron 65 ensayos (72 comparaciones) con 5831 participantes. Se dispuso de datos para: 1) 20 comparaciones; 2) nueve comparaciones; 3) 25 comparaciones; 4) tres comparaciones; 5) 14 comparaciones; y 6) una comparación. No se encontraron ensayos para las comparaciones 7 a 9. Comparación 1: Intervenciones farmacológicas Evidencia de certeza muy baja de ocho ensayos indica que las intervenciones farmacológicas disminuyeron el número de personas que cumplían los criterios del estudio para la depresión (RR 0,70; IC del 95%: 0,55 a 0,88; p = 0,002; ocho ECA; 1025 participantes) al final del tratamiento y evidencia de certeza muy baja de seis ensayos indica que las intervenciones farmacológicas disminuyeron el número de personas con respuesta inadecuada al tratamiento (RR 0,47; IC del 95%: 0,32 a 0,70; p = 0,0002; seis ECA; 511 participantes) en comparación con placebo. Se observaron más eventos adversos relacionados con el sistema nervioso central (SNC) (RR 1,55; IC del 95%: 1,12 a 2,15; p = 0,008; cinco ECA; 488 participantes; evidencia de certeza muy baja) y el sistema gastrointestinal (RR 1,62; IC del 95%: 1,19 a 2,19; p = 0,002; cuatro ECA; 473 participantes; evidencia de certeza muy baja) en el grupo de intervención farmacológica que en el grupo placebo. Comparación 2: Estimulación cerebral no invasiva Evidencia de certeza muy baja de dos ensayos muestra que la estimulación cerebral no invasiva tuvo poco o ningún efecto sobre el número de personas que cumplían los criterios del estudio para la depresión (RR 0,67; IC del 95%: 0,39 a 1,14; p = 0,14; dos ECA; 130 participantes) y el número de personas con respuesta inadecuada al tratamiento (RR 0,84; IC del 95%: 0,52 a 1,37; p = 0,49; dos ECA; 130 participantes) en comparación con la estimulación simulada. La estimulación cerebral no invasiva no provocó muertes. Comparación 3: Terapia psicológica Evidencia de certeza muy baja de seis ensayos indica que la terapia psicológica disminuyó el número de personas que cumplían los criterios del estudio para la depresión al final del tratamiento (RR 0,77; IC del 95%: 0,62 a 0,95; p = 0,01; 521 participantes) en comparación con atención habitual/control de atención. Ningún ensayo de terapia psicológica informó sobre el desenlace respuesta inadecuada al tratamiento. No se encontraron diferencias en el número de muertes o eventos adversos en el grupo de terapia psicológica en comparación con el grupo de control de atención/atención habitual. Comparación 4: Intervenciones farmacológicas con terapia psicológica Ningún ensayo de esta combinación informó sobre los desenlaces principales. El tratamiento combinado no provocó muertes. Comparación 5: Intervenciones farmacológicas con estimulación cerebral no invasiva La estimulación cerebral no invasiva con intervención farmacológica redujo el número de personas que cumplían los criterios del estudio para la depresión al final del tratamiento (RR 0,77; IC del 95%: 0,64 a 0,91; p = 0,002; tres ECA; 392 participantes; evidencia de certeza baja), pero no el número de personas con respuesta inadecuada al tratamiento (RR 0,95; IC del 95%: 0,69 a 1,30; p = 0,75; tres ECA; 392 participantes; evidencia de certeza muy baja) en comparación con el tratamiento farmacológico solo. Evidencia de certeza muy baja de cinco ensayos no indica diferencias en las muertes entre este tratamiento combinado (RR 1,06; IC del 95%: 0,27 a 4,16; p = 0,93; 487 participantes) en comparación con la intervención de tratamiento farmacológico y la estimulación simulada o la atención habitual. Comparación 6: Estimulación cerebral no invasiva con terapia psicológica Ningún ensayo de esta combinación informó sobre los desenlaces principales. CONCLUSIONES DE LOS AUTORES: Evidencia de certeza muy baja indica que los tratamientos farmacológicos, las terapias psicológicas y los tratamientos combinados pueden reducir la prevalencia de la depresión, mientras que la estimulación cerebral no invasiva tuvo poco o ningún efecto sobre la prevalencia de la depresión. Las intervenciones farmacológicas se asociaron con eventos adversos relacionados con el SNC y el sistema gastrointestinal. Se necesitan más estudios de investigación antes de poder hacer recomendaciones sobre el uso habitual de dichos tratamientos.

Depression, anxiety, and loneliness among adolescents and young adults with IBD in the UK: the role of disease severity, age of onset, and embarrassment of the condition.

PURPOSE: Adolescents and young adults (AYA) with Inflammatory Bowel Disease (IBD) report higher depressive symptoms and anxiety compared to healthy controls, with disease severity and abdominal pain being important factors. In the current study, building on what young people had told us in our previous work, we examined whether embarrassment of the condition, social self-efficacy, and friendship quality mediated the relationship between abdominal pain and disease severity, and mental health/well-being. We also included loneliness as a component of well-being. METHODS: Data on depression, anxiety, loneliness, friendship quality, social self-efficacy, and disease embarrassment were collected from 130 AYA with IBD ages 14-25 years; data on disease severity and abdominal pain were taken from their medical records. Structural Equation Modeling (SEM) was used to test the relationships between the variables. RESULTS: Using SEM, we established that higher IBD disease activity negatively impacted how AYA felt about their friendships and how embarrassed they were about their condition; embarrassment then influenced reports of mental health, including loneliness. Abdominal pain, disease onset, and social self-efficacy directly predicted internalising problems. CONCLUSION: In this sample of 14-25-year-old patients with IBD, specifics about the disease (severity and pain) predicted poorer mental health, suggesting discussion of mental health should be part of the clinical dialogue between patient and consultant. In addition, embarrassment about their condition increased depression, anxiety, and loneliness, mediating the relationship between disease severity and well-being. Thus, it is important to consider how perceived stigma affects those with chronic illness, and those issues should be explored in clinic.

The impact of parent treatment preference and other factors on recruitment: lessons learned from a paediatric epilepsy randomised controlled trial.

BACKGROUND: In paediatric epilepsy, the evidence of effectiveness of antiseizure treatment is inconclusive for some types of epilepsy. As with other paediatric clinical trials, researchers undertaking paediatric epilepsy clinical trials face a range of challenges that may compromise external validity MAIN BODY: In this paper, we critically reflect upon the factors which impacted recruitment to the pilot phase of a phase IV unblinded, randomised controlled 3×2 factorial trial examining the effectiveness of two antiseizure medications (ASMs) and a sleep behaviour intervention in children with Rolandic epilepsy. We consider the processes established to support recruitment, public and patient involvement and engagement (PPIE), site induction, our oversight of recruitment targets and figures, and the actions we took to help us understand why we failed to recruit sufficient children to continue to the substantive trial phase. The key lessons learned were about parent preference, children's involvement and collaboration in decision-making, potential and alternative trial designs, and elicitation of stated preferences pre-trial design. Despite pre-funding PPIE during the trial design phase, we failed to anticipate the scale of parental treatment preference for or against antiseizure medication (ASMs) and consequent unwillingness to be randomised. Future studies should ensure more detailed and in-depth consultation to ascertain parent and/or patient preferences. More intense engagement with parents and children exploring their ideas about treatment preferences could, perhaps, have helped predict some recruitment issues. Infrequent seizures or screening children close to natural remission were possible explanations for non-consent. It is possible some clinicians were unintentionally unable to convey clinical equipoise influencing parental decision against participation. We wanted children to be involved in decisions about trial participation. However, despite having tailored written and video information to explain the trial to children we do not know whether these materials were viewed in each consent conversation or how much input children had towards parents' decisions to participate. Novel methods such as parent/patient preference trials and/or discrete choice experiments may be the way forward. CONCLUSION: The importance of diligent consultation, the consideration of novel methods such as parent/patient preference trials and/or discrete choice experiments in studies examining the effectiveness of ASMs versus no-ASMs cannot be overemphasised even in the presence of widespread clinician equipoise.

Changing Agendas on Sleep, Treatment and Learning in Epilepsy (CASTLE) Sleep-E: a protocol for a randomised controlled trial comparing an online behavioural sleep intervention with standard care in children with Rolandic epilepsy.

INTRODUCTION: Sleep and epilepsy have an established bidirectional relationship yet only one randomised controlled clinical trial has assessed the effectiveness of behavioural sleep interventions for children with epilepsy. The intervention was successful, but was delivered via face-to-face educational sessions with parents, which are costly and non-scalable to population level. The Changing Agendas on Sleep, Treatment and Learning in Epilepsy (CASTLE) Sleep-E trial addresses this problem by comparing clinical and cost-effectiveness in children with Rolandic epilepsy between standard care (SC) and SC augmented with a novel, tailored parent-led CASTLE Online Sleep Intervention (COSI) that incorporates evidence-based behavioural components. METHODS AND ANALYSES: CASTLE Sleep-E is a UK-based, multicentre, open-label, active concurrent control, randomised, parallel-group, pragmatic superiority trial. A total of 110 children with Rolandic epilepsy will be recruited in outpatient clinics and allocated 1:1 to SC or SC augmented with COSI (SC+COSI). Primary clinical outcome is parent-reported sleep problem score (Children's Sleep Habits Questionnaire). Primary health economic outcome is the incremental cost-effectiveness ratio (National Health Service and Personal Social Services perspective, Child Health Utility 9D Instrument). Parents and children (≥7 years) can opt into qualitative interviews and activities to share their experiences and perceptions of trial participation and managing sleep with Rolandic epilepsy. ETHICS AND DISSEMINATION: The CASTLE Sleep-E protocol was approved by the Health Research Authority East Midlands (HRA)-Nottingham 1 Research Ethics Committee (reference: 21/EM/0205). Trial results will be disseminated to scientific audiences, families, professional groups, managers, commissioners and policymakers. Pseudo-anonymised individual patient data will be made available after dissemination on reasonable request. TRIAL REGISTRATION NUMBER: ISRCTN13202325.

Parents'/caregivers' fears and concerns about their child's epilepsy: A scoping review.

BACKGROUND: Childhood epilepsy is a serious and common neurological condition and can have life-long consequences and its impact can pervade all aspects of family life. Whilst the medical management of seizures is important, much of the day-to-day home management of epilepsy is invisible to people external to the family, including health care professionals, and parents'/caregivers' fears and concerns can go unacknowledged and unaddressed by health care professionals. OBJECTIVE: This objective of this review was to examine parents'/caregivers' fears and concerns regarding their child's epilepsy, the impact of these fears and concerns on family life, the social and emotional well-being of parents/caregivers and any factors which mitigate these fears and concerns. DESIGN: Scoping review using a modified version of Arksey and O'Malley's framework. DATA SOURCES: Relevant studies were identified using key search terms in Scopus, Medline, CINAHL and PsychInfo databases in March 2021 with hand checking of reference lists. Search terms were developed using population (parents/caregivers of children aged ≤ 18 years with epilepsy, families); concept (parents'/caregivers' fears, concerns, anxiety about their child's epilepsy); and context (any setting). A further search was run in April 2022. Other inclusion criteria: English language empirical studies, 2010-2021. STUDY APPRAISAL METHODS: A minimum of two reviewers independently screened articles and undertook data extraction and decisions were consensually made. Methodological quality appraisal was undertaken using the Mixed Methods Appraisal Tool v2018. A data extraction table was created to chart all studies. The conduct and reporting of this study followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidance for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) (S1 Table). There is no published copy of the review protocol. MAIN FINDINGS: The search identified a total of 4077 papers (after duplicates were removed) of which 110 were assessed for eligibility. Twenty-four papers published between 2010-2021 were included in the review and each paper was treated as a separate study. The review findings indicate that parents'/caregivers' fears and concerns stem from more than their child's seizures and relate to many wider aspects of family life. These fears and concerns had far-reaching influences on their parenting/caregiving, and on the lifestyle and activities of their child and their family. What was less evident was what parents/caregivers wanted in terms of support or how they thought health professionals could acknowledge and/or allay their fears and concerns. The discussion is framed within the compassion-focused therapy model as a basis for generating new thinking about the impact of these fears and concerns and the need for a new agenda for clinical consultations in childhood epilepsy. CONCLUSIONS: The review concludes with a proposal that a more compassionate agenda underpins the dialogue between parents/caregivers and clinicians to encompass and mitigate the wider emotional, psychosocial, and societal threats that impact on the parent/caregivers of children with epilepsy.

Children and young people's contributions to public involvement and engagement activities in health-related research: A scoping review.

BACKGROUND: There has been an increasing interest in how children and young people can be involved in patient and public involvement and engagement (PPIE) in health research. However, relatively little robust evidence exists about which children and young people are reported as being involved or excluded from PPIE; the methods reported as being used to involve them in PPIE; and the reasons presented for their involvement in PPIE and what happens as a result. We performed a scoping review to identify, synthesise and present what is known from the literature about patient and public involvement and engagement activities with children and young people in health related research. METHODS: Relevant studies were identified by searches in Scopus, Medline, CINAHL, Cochrane and PsychInfo databases, and hand checking of reference lists and grey literature. An adapted version of the Guidance for Reporting Involvement of Patients and the Public (GRIPP2) was used as a framework to collate the data. Two reviewers independently screened articles and decisions were consensually made. MAIN FINDINGS: A total of 9805 references were identified (after duplicates were removed) through the literature search, of which 233 full-text articles were assessed for eligibility. Forty studies published between 2000 and 2019 were included in the review. The review reveals ambiguities in the quality of reporting of PPIE with children with clear reporting on demographics and health conditions. The review found that children and young people were commonly involved in multiple stages of research but there was also significant variation in the level at which children and young people were involved in PPIE. Evaluation of the impact of children and young people's involvement in PPIE was limited. CONCLUSIONS: Consultation, engagement and participation can all offer children and young people worthwhile ways of contributing to research with the level, purpose and impact of involvement determined by the children and young people themselves. However, careful decisions need to be made to ensure that it is suited to the context, setting and focus so that the desired PPIE impacts are achieved. Improvements should be made to the evaluation and reporting of PPIE in research. This will help researchers and funders to better understand the benefits, challenges and impact of PPIE with children and young people on health research.

Sustaining, Forming, and Letting Go of Friendships for Young People with Inflammatory Bowel Disease (IBD): A Qualitative Interview-Based Study.

Inflammatory bowel disease (IBD) is an incurable, chronic, gastrointestinal condition that can constrain young people's social relationships. Few studies have specifically explored friendships of people with IBD. This qualitative, participatory study used interviews, photographs, and friendship maps to explore friendships and friendship networks of young people with IBD. An online Young Person's Advisory Group was actively engaged throughout the study. Thirty-one young people participated (n = 16 males, n = 15 female; n = 24 Crohn's disease, n = 6 ulcerative colitis, n = 1 IBD-unclassified; the mean age at study was 18.7 years; range 14-25 years). Findings present a metatheme "The importance and meaning of friendships" and three interwoven subthemes of "Sustaining friendships," "Forming new friendships," and "Letting go of friendships." Friendship was important to the young people with IBD, providing support, but associated with challenges such as disclosure. Such challenges could be mitigated by clearer conversations with clinicians about friendships and more extensive conversations about friendships and long-term conditions in education settings.

"I Don't Like to Make a Big Thing out of It": A Qualitative Interview-Based Study Exploring Factors Affecting Whether Young People Tell or Do Not Tell Their Friends about Their IBD.

Inflammatory Bowel Disease (IBD) describes a group of conditions that includes Crohn's disease and ulcerative colitis. Unlike some chronic conditions, to a greater or lesser extent, IBD is hidden from or invisible to others which enables concealment of the condition, especially when stigma is associated with the condition. Concealment or nondisclosure allows a means of identity management. Disclosure of a chronic condition is not a single event, and it is dependent on many factors. There is little literature that specifically addresses stigma and/or disclosure in relation to children and young people with IBD. An in-depth qualitative study was undertaken, framed by Interpretive Description and using interviews, friendship maps, and photographs within a participatory framework. Public and patient involvement and engagement (PPIE) was undertaken throughout (inception to dissemination) the study. Young people aged 14-25 years with IBD who had participated in the survey phase of the larger study self-selected to participate in interviews that focused broadly on friendship and feelings of social connectedness. Data were analysed using an iterative, interpretive approach. Preliminary themes were developed and these were explored further, and then tentative theoretical connections about friendship were developed. One superordinate theme focused on disclosure. Thirty-one young people (16 males, 15 females, mean age 18.7 years; 24 Crohn's, 7 colitis) participated in the interviews (of these, five created friendship maps and six utilised photographs). Three discrete, but interlinked, themes were generated, revealing young people's experiences of disclosure: to tell or not to tell; controlling the flow: the who, when, what, and how of telling; and reactions and responses to telling: anticipated and actual. Decisions about telling friends about having IBD are challenging for many young people. Having control over disclosure is not always possible, and the potential consequences can feel risky. However, most young people had positive experiences of disclosure and gained support from friends and romantic partners. Most young people downplayed the seriousness of their IBD, revealing some facets of their condition, aiming to sustain their self-identity. Only one young person had been given professional support to disclose. Provision of support and opportunities to discuss whether, when, who, and how to tell friends and what the risks and benefits may be is something that could be woven into an ongoing and wider person-centred dialogue between young people and health professionals within routine clinic visits.