Mental Health, Psychosocial Functioning, and Quality of Life in Adolescents With Hirschsprung Disease.

BACKGROUND: Studies of mental health in adolescents with Hirschsprung disease (HD) are scarce. This cross-sectional study investigates mental health, psychosocial functioning and quality of life in HD adolescents. METHODS: Adolescents (12-18 years) treated at the Department of pediatric surgery at Oslo University Hospital were invited for participation. Mental health was assessed by interview; Child Assessment Schedule (CAS) and questionnaires; parental Child Behavior Checklist (CBCL) and adolescent Youth Self-Report (YSR). Psychosocial functioning was rated by Child Global Assessment Scale (cGAS). Adolescent Quality of Life was assessed by Pediatric Quality of Life inventory (PedsQL) and chronic family difficulties (CFD) by interview. Medical records were reviewed for somatic history. RESULTS: Thirty-seven adolescents, 28 males, median age 14.3 years, participated. By CAS interview, 8 of 37 (44% of females and 14% of males) fulfilled criteria for psychiatric diagnosis all within emotional and related disorders. Twenty-seven percent had CBCL internalizing scores and 16% had YSR internalizing scores in clinical range indicating emotional problems. By interviewer rated cGAS, 27% were scored in clinical range. By PedsQL 16% reported reduced psychosocial health score. Increased CFD, lower psychosocial functioning and reduced QoL as well as less paternal education were significantly associated with psychiatric diagnosis. Twice as many (4/8) adolescents who either had a stoma or bowel management had a psychiatric diagnosis compared to those who had neither stoma nor bowel management (7/28). CONCLUSION: Nearly one in four adolescents with HD fulfilled criteria for psychiatric diagnosis. Mental health problems were associated with reduced psychosocial function and reduced QoL. LEVEL OF EVIDENCE: III.

Nurses' Experiences With Anal Dilatations in Babies With Anorectal Malformations - A Focus Group Interview Study.

AIMS AND OBJECTIVES: To explore nurses' experiences with anal dilatations in babies with anorectal malformations. BACKGROUND: Most babies with anorectal malformations require repeated anal dilatations, either before and/or after reconstructive surgery. Anal dilatation is usually performed without sedation or pain medication. Nurses participate in anal dilatations by assisting doctors doing anal dilatation, doing anal dilatation themselves, and instructing parents how to do anal dilatations. No previous studies have explored how nurses experience being involved in anal dilatations. DESIGN: Qualitative study design utilizing focus group interviews. The COREQ guidelines were applied. METHODS: Nurses with either ≤2 or ≥10 years' working experience participated in two different focus group interviews. The focus group interviews were transcribed and analyzed with content analysis. RESULTS: Twelve nurses, two males, participated. Three main themes emerged from the focus group interviews. The first main theme, "Anal dilatation causes distress", describes the nurses' worries about causing physical and/or psychological harm when doing anal dilatations. The second main theme, "Need for guidelines and training", contains nurses' recommendations for more theoretical training in addition to written guidelines on anal dilatations. The third main theme, "Collegial support is vital", describes nurses' needs and strategies for coping with difficult situations related to anal dilatations. CONCLUSIONS: Anal dilatation causes distress in nurses, and collegial support is essential for coping. Guidelines and systematic training are recommended to improve current practice. LEVEL OF EVIDENCE: VI.

Reaching adulthood with Hirschsprung's disease: Patient experiences and recommendations for transitional care.

BACKGROUND/PURPOSE: The need for transitional care has gained increased focus in the treatment of patients with congenital colorectal disorders. We aimed to acquire in-depth knowledge about the experiences of adult patients with Hirschsprung's disease (HD) and their suggestions for transitional care. METHODS: Binational study applying gender equal focus group interviews (FGI). RESULTS: Seventeen (9 men) of 52 invited patients with median age 29 (19-43) years participated. Three themes evolved from the FGI. "Scarred body and soul" describes the somatic and psychosocial challenges the patients experienced and "limited health literacy on HD" refers to the patients' lack of HD knowledge. "Absent transition" depicts missing transitional care and the patients' inability to find adult HD specialists. The adult HD patients strongly recommended transitional care from early teens with focus on information about HD and establishment of a peer-to-peer program. They also emphasized the possibility of being referred to a pelvic floor center. CONCLUSIONS: HD negatively influences patients' somatic and psychosocial health in childhood, adolescence and adulthood. Adult HD patients strongly recommend transitional care from early teens and the possibility for referral to a center working with pelvic floor dysfunctions. LEVEL OF EVIDENCE: IV TYPE OF RESEARCH: Clinical.

Key components of successful transition for adolescents born with anorectal malformations-a Nordic focus group study.

OBJECTIVES: Transitional care for adolescents with congenital malformations, such as anorectal malformations (ARM), is described sparsely in the literature and referred to as being inadequate. In order to organize future successful healthcare structures, knowledge of patient-reported important aspects of transition is required. The aim of the study was therefore to explore the needs and expectations of transitional- and adult healthcare among adolescents and adults born with ARM. METHODS: Two tertiary paediatric surgical centres, in collaboration with two tertiary pelvic floor centres, in Sweden and Norway, conducted a qualitative study, involving adolescents and adults born with ARM in focus group discussions regarding transitional care. Discussions were analyzed by qualitative content analysis. Ethical approval was obtained. RESULTS: Sixteen participants (10 women) with a median age of 24 (19-47) years, born with mixed subtypes of ARM were included in gender-divided focus groups. Participants emphasized a need for improved knowledge of ARM, both among patients and adult care providers. Participants identified a need for support with coping strategies regarding challenging social- and intimate situations due to impaired bowel function. Participants pin-pointed well-functioning communication between the patient and the paediatric- and adult care providers as a key factor for a successful transitional process. Further, participants emphasized the importance of easy access to specialized adult healthcare when needed, suggested to be facilitated by appointed patient navigators. CONCLUSION: Adolescents and adults born with ARM identify improved knowledge of ARM, well-functioning communication and easy access to specialized adult care as key components of a successful transition.

Chronic fatigue in adolescence--autonomic dysregulation and mental health: an exploratory study.

AIM: The present study investigates associations between autonomic cardiovascular dysregulation, psychosocial load and mental health in adolescents presenting with chronic fatigue. METHOD: Twenty-two adolescents, mean age 15.7 years (12.7-19.1), underwent a clinical mental health examination as part of a broad medical investigation which included autonomic tests. Adolescents and their parents were also interviewed with regard to psychosocial stress factors, family health and previous illnesses. A count of psychosocial load was made for each adolescent based on the interview. RESULTS: Of 22 fatigued adolescents in the present sample, 14 had psychiatric diagnoses. There was no significant difference in psychosocial load for the fatigued adolescents classified with normal autonomic regulation compared to those with deviant or borderline autonomic regulation. The present psychiatric diagnosis did not differ between the two groups. In a subsample, there was a significant negative association between depressive symptoms and abnormal blood pressure responses during orthostatic challenge. CONCLUSION: No significant psychiatric or psychosocial differences between fatigued adolescents with or without autonomic dysregulation were found in this study. The trends towards higher psychosocial load and greater burden of depressive symptoms in fatigued adolescents with normal autonomic regulation warrant further studies.